DECLARATION I, Ronelle Jansen, declare that the thesis (interrelated published and publishable articles) that I hereby submit for the Doctoral degree in Nursing at the University of the Free State, is my independent work, and that I have not previously submitted it for a qualification at another institution of higher education. I, Ronelle Jansen, hereby declare that I am aware that the copyright is vested in the University of the Free State. I, Ronelle Jansen, declare that all royalties as regards to intellectual property that was developed during the course of and/or in connection with the study at the University of the Free State will accrue to the University (Addendum A). _______________________ RONELLE JANSEN JUNE 2020 ii FINANCIAL CONTRIBUTION The researcher gratefully acknowledges funding by the Free State Department of Health [DOH 81/16/17] in support of this study. Without this assistance, the research would not have been possible. iii LANGUAGE EDITING CERTIFICATE iv DEDICATION This work is dedicated to caregivers of teenagers “So now faith, hope, and love abide, these three; but the greatest of these is love.” 1 Corinthians 13:13 v ACKNOWLEDGEMENTS I am most grateful to my Heavenly Father, who is my Refuge and my Fortress, and who surrounds me with His unending grace. I would also like to offer my sincerest gratitude to the following people:  My husband, Stephen, for your love, understanding and prayers over the years. I am very thankful for all you have done to make it easier for me.  My wonderful children, Marco and Zané: Thank you for your sacrifice, patience and understanding. Mamma is baie lief vir julle.  All my family and friends: A heartfelt thanks for your patience and support, and for believing in me and giving me the space to isolate myself from time to time.  My promotor, Dr Marianne Reid, for offering me ongoing support and endless patience, and being my mentor throughout the study.  All my kind-hearted colleagues: Thanks for your interest in my research, all your support and encouragement.  Marita: A big thank you for helping with the data analysis.  Annamarie du Preez, for your patience and assistance with every query I had.  Deirdre and Cynthia, for your knowledge and time during the quality appraisal workshop.  Prof. Magda Mulder, for being supportive and encouraging all the way.  My fellow PhD friends, Melanie and Elgonda: Sharing this journey kept me strong.  Hettie Human, for your assistance in editing this thesis.  The research participants, for your willingness, time and contribution to making the study a success. I feel honoured to have been granted the opportunity to do this PhD. It has been a great journey and I will take the lessons with me, no matter what I do. vi SUMMARY This study focused on developing an mHealth communication framework for rural caregivers of adolescents with mental health issues. Adolescents carry a high burden of mental health issues. Their caregivers, usually parents, relatives or community members, play a pivotal role in caring for these adolescents, which causes challenges for the caregivers. Caregivers in rural settings face specific challenges relating to adolescents with mental health issues, leading to unmet support needs. The potential value of using communication technology to support rural caregivers has been recognised by research. The aim of the study was to develop an mHealth communication framework for caregivers of adolescents with mental health issues in the Kopanong municipality of the Free State province of South Africa. This study is best conceptualised as the developmental phase of a complex intervention. A pragmatic study was undertaken by employing a multiple method design and harnessing a three-phase approach that was guided by the theory-of-change logic model, while the integrated model of behaviour prediction (IMBP) served as a conceptualisation of the programme that targeted rural caregivers. Phase 1 implemented a visual-based narrative inquiry that collected data through the Mmogo- method®, and aimed to explore caregivers’ interest in using communication technology in two towns of the Kopanong municipality in the Free State province of South Africa. The researcher collected data from rural caregivers (n=17) comprising three groups in the towns of Springfontein and Trompsburg. Through a stepwise literature-based process for investigating textual and visual data, the researcher identified four themes. Three themes represent challenges facing caregivers, namely, psychosocial, social resources and informational challenges. Interest in communication technology was the fourth theme. Caregivers favoured using SMS (short messaging service), phone calls and computers. In Phase 2, literature was reviewed systematically to find the best evidence available to strengthen positive behaviour by caregivers of adolescents with mental health issues by using communication technology interventions. Five articles out of an initial 1 746 articles met the eligibility criteria and were included in the data synthesis. The researcher derived three thematic conclusions: 1) The target population included vii parents and family members serving as caregivers; 2) Caregivers experienced improved IMBP determinants (self-efficacy, knowledge, parent/child communication, parental skills), which was reflected in positive behaviour; and 3) Caregivers used various types of communication technologies (SMS, emails, phone calls, online communication, social media). Findings from these two phases were triangulated to develop a draft framework based on the theory-of-change logic model components. The completed draft framework was presented to expert stakeholders in the third phase during a workshop. Phase 3 comprised a one-day validation workshop that was attended by nine expert stakeholders involved in various adolescent healthcare settings. An experienced facilitator coordinated the workshop, thereby enabling a discussion on each component suggested in the theory-of-change logic model, using forward and backward mapping. Expert stakeholders contributed to three theory-of-change components depicted in the framework, specifically, community needs, desired results, and evidence-based strategies, to finalise the framework. This validation workshop concluded after consensus was reached on the final framework. Through evidence-based research, the framework can facilitate a programme for supporting caregivers through an mHealth initiative that results in positive caregiver behaviour change. This framework for an mHealth initiative for rural caregivers of adolescents with mental health issues illustrates the development phase of a complex intervention. Piloting this framework will be the next phase. The researcher will participate in the piloting, with the Free State Department of Health being a key stakeholder. Keywords Caregiver, adolescent, mental health issues, rural, communication technology, mHealth, theory-of-change logic model, integrated model of behaviour prediction, framework viii TABLE OF CONTENTS DECLARATION ........................................................................................................... ii FINANCIAL CONTRIBUTION ..................................................................................... iii LANGUAGE EDITING CERTIFICATE ....................................................................... iv DEDICATION .............................................................................................................. v ACKNOWLEDGEMENT ............................................................................................. vi SUMMARY ................................................................................................................ viii LIST OF FIGURES .................................................................................................... xv LIST OF PHOTOS..................................................................................................... xvi LIST OF TABLES ..................................................................................................... xvii LIST OF ABBREVIATIONS AND ACRONYMS ....................................................... xviii PREAMBLE ............................................................................................................... xix SCHOLARLY CONTRIBUTIONS FROM THIS WORK .......................................... ...xx CONCEPTUAL AND OPERATIONAL DEFINITIONS ........................................... …xxi CONTEXT OF THE RESEARCH ............................................................................. .xiv CHAPTER 1: OVERVIEW OF THE STUDY ............................................................... 1 1.1 INTRODUCTION ........................................................................................... 1 1.2 BACKGROUND ............................................................................................ 1 1.3 PROBLEM STATEMENT .............................................................................. 6 1.4 RESEARCH QUESTION .............................................................................. 8 1.5 AIM ................................................................................................................ 8 1.6 OBJECTIVES ................................................................................................ 9 1.7 THEORETICAL UNDERPINNING OF THE STUDY ..................................... 9 1.7.1 Theory-of-change logic model ................................................................ 11 ix 1.7.2 Integrated model of behaviour prediction ............................................... 13 1.8 DESIGN OF THE STUDY ........................................................................... 15 1.9 RESEARCH APPROACH AND PARADIGM............................................... 16 1.10 PHASE 1: RURAL CAREGIVERS’ INTEREST IN USING COMMUNICATION TECHNOLOGY ........................................................................................... 17 1.10.1 Research method ................................................................................... 17 1.10.2 Population and sampling ........................................................................ 18 1.10.3 Piloting and refining the Mmogo-method® .............................................. 19 1.10.4 Data collection ........................................................................................ 19 1.10.5 Data analysis .......................................................................................... 20 1.11 PHASE 2: SYSTEMATIC REVIEW ............................................................. 20 1.11.1 Review question ..................................................................................... 21 1.11.2 Search strategy ...................................................................................... 21 1.11.3 Eligibility criteria and selection procedure .............................................. 22 1.11.4 Quality appraisal ..................................................................................... 22 1.11.5 Data extraction, analysis and synthesis ................................................. 23 1.11.6 Development of draft framework ............................................................ 23 1.12 PHASE 3: VALIDATION WORKSHOP ....................................................... 23 1.12.1 Population .............................................................................................. 23 1.12.2 Validation workshop ............................................................................... 24 1.12.3 Finalising the framework ........................................................................ 24 1.13 METHODOLOGICAL INTEGRITY .............................................................. 24 1.14 ETHICAL CONSIDERATIONS .................................................................... 26 1.14.1 Honesty in all aspects of research .......................................................... 26 1.14.2 Accountability in the conduct of research ............................................... 26 x 1.14.3 Professional courtesy to and fairness in working with others ................. 27 1.14.4 Good stewardship of research on behalf of others ................................. 27 1.15 MEASUREMENT ERRORS ........................................................................ 27 1.16 STRUCTURE OF THIS THESIS ................................................................. 29 CHAPTER 2: LITERATURE REVIEW: CAREGIVERS OF ADOLESCENTS WITH MENTAL HEALTH ISSUES ..................................................................................... 31 2.1 INTRODUCTION ......................................................................................... 31 2.2 THE CAREGIVER CONTEXT ..................................................................... 31 2.3 THE CONCEPT OF CAREGIVER .............................................................. 34 2.3.1 Characterising caregivers in general ...................................................... 34 2.3.2 Profile of South African caregivers ......................................................... 36 2.3.3 The prevalence of caregivers concerning children and adolescents ...... 37 2.4 CARE RECIPIENTS: ADOLESCENTS WITH MENTAL HEALTH ISSUES 38 2.4.1 Mental health issues in adolescence and related concepts .................... 39 2.4.2 Mental health issues and the caregivers of adolescents ........................ 41 2.4.3 Mental health issues and culture ............................................................ 42 2.4.4 Indicators of mental health issues .......................................................... 43 2.5 THE PREVALENCE OF ADOLESCENT MENTAL HEALTH ISSUES ........ 47 2.6 IMPACT ON CAREGIVERS’ CARING FOR ADOLESCENTS WITH MENTAL HEALTH ISSUES ........................................................................................ 48 2.6.1 Caregiver burden .................................................................................... 49 2.6.2 Caregiver well-being ............................................................................... 51 2.7 CAREGIVERS’ UNMET NEEDS AND SUPPORT CHALLENGES ............. 52 2.7.1 Information needs ................................................................................... 53 2.7.2 Training needs ........................................................................................ 54 2.7.3 Need for professional assistance ........................................................... 54 xi 2.7.4 Support network needs .......................................................................... 55 2.7.5 Emotional needs ..................................................................................... 56 2.7.6 Spiritual needs ........................................................................................ 56 2.7.7 Financial needs ...................................................................................... 57 2.8 TARGETED INITIATIVES FOR CAREGIVERS .......................................... 58 2.9 CHAPTER SUMMARY ................................................................................ 60 CHAPTER 3: LITERATURE REVIEW: MOBILE HEALTH COMMUNICATION TECHNOLOGY AND THE CAREGIVERS OF ADOLESCENTS WITH MENTAL HEALTH ISSUES ..................................................................................................... 61 3.1 INTRODUCTION ......................................................................................... 61 3.2 INITIATING COMMUNICATION TECHNOLOGY AS SUPPORT TO CAREGIVERS OF ADOLESCENTS WITH MENTAL HEALTH ISSUES .... 61 3.2.1 The communication technology landscape ............................................ 62 3.2.2 eHealth milieu ......................................................................................... 63 3.3 THE MHEALTH TECHNOLOGY LANDSCAPE .......................................... 65 3.3.1 Characteristics of mHealth technology in healthcare .............................. 66 3.3.2 mHealth and caregiving .......................................................................... 67 3.3.3 Benefits and barriers of mHealth initiatives ............................................ 69 3.4 CAREGIVERS’ READINESS TO ADOPT MHEALTH INITIATIVES ........... 72 3.4.1 International regulation ........................................................................... 74 3.4.2 South African legal framework and regulation ........................................ 76 3.5 MOBILE PHONE TECHNOLOGY ............................................................... 81 3.5.1 The mobile phone as the caregiver’s vehicle to support ......................... 82 3.5.2 Messaging services ................................................................................ 86 3.5.3 Call services ........................................................................................... 91 3.5.4 Helplines................................................................................................. 93 xii 3.5.5 Mobile applications ................................................................................. 94 3.6 CHAPTER SUMMARY ................................................................................ 97 CHAPTER 4: INTEREST IN COMMUNICATION TECHNOLOGY BY RURAL CAREGIVERS OF ADOLESCENTS WITH MENTAL HEALTH ISSUES IN SOUTH AFRICA: THE MMOGO-METHOD® ......................................................................... 98 4.1 INTRODUCTION ......................................................................................... 98 4.2 MANUSCRIPT DETAILS............................................................................. 98 4.3 ASSOCIATED ADDENDA........................................................................... 98 CHAPTER 5: CAREGIVERS OF ADOLESCENTS WITH MENTAL HEALTH ISSUES USING COMMUNICATION TECHNOLOGY: A SYSTEMATIC REVIEW ............... 113 5.1 INTRODUCTION ....................................................................................... 113 5.2 MANUSCRIPT DETAILS........................................................................... 113 5.3 ASSOCIATED ADDENDA......................................................................... 113 CHAPTER 6: A FRAMEWORK FOR DEVELOPING AN MHEALTH INITIATIVE TO SUPPORT RURAL CAREGIVERS OF ADOLESCENTS WITH MENTAL HEALTH ISSUES .................................................................................................................. 130 6.1 INTRODUCTION ....................................................................................... 130 6.2 MANUSCRIPT DETAILS........................................................................... 130 6.3 ASSOCIATED ADDENDA......................................................................... 130 CHAPTER 7: CONCLUSIONS AND IMPLICATIONS ............................................ 177 7.1 INTRODUCTION ....................................................................................... 177 7.2 SUMMARY OF THE PROBLEM STATEMENT, RESEARCH QUESTIONS, AND STUDY AIM ...................................................................................... 177 7.3 METHODOLOGY ...................................................................................... 179 7.4 FACTUAL CONCLUSIONS....................................................................... 180 7.4.1 Phase 1 ................................................................................................ 180 7.4.2 Phase 2 ................................................................................................ 181 xiii 7.4.3 Phase 3 ................................................................................................ 182 7.5 CONCEPTUAL CONCLUSIONS .............................................................. 182 7.6 LIMITATIONS ............................................................................................ 185 7.7 IMPLICATIONS AND RECOMMENDATIONS OF THE STUDY ............... 186 7.7.1 Implications for theory .......................................................................... 186 7.7.2 Implications for practice ........................................................................ 187 7.7.3 Implications for future research ............................................................ 190 7.8 CONCLUDING REMARKS ....................................................................... 191 REFERENCES ....................................................................................................... 192 ADDENDUM A ....................................................................................................... 235 ADDENDUM B ....................................................................................................... 239 ADDENDUM C ....................................................................................................... 241 ADDENDUM D ....................................................................................................... 243 ADDENDUM E ....................................................................................................... 245 ADDENDUM F ....................................................................................................... 252 ADDENDUM G ....................................................................................................... 254 ADDENDUM H ....................................................................................................... 288 ADDENDUM I ........................................................................................................ 291 ADDENDUM J ........................................................................................................ 294 xiv LIST OF FIGURES Figure 1. Xhariep district with Kopanong municipality in the Free State province, South Africa ......................................................................................................................... xxiv Figure 1.1: Positioning of the study’s development stage within the complex intervention .................................................................................................................................... 10 Figure 1.2: Theory-of-change logic model diagram ..................................................... 13 Figure 1.3: Integrated model in behaviour prediction diagram .................................... 14 Figure 3.1: Mobile phone functions, opportunities, and caregiving behaviour ............. 85 Figure 3.2: Tailoring, targeted and mass health communication ................................. 88 Figure 3.3: Communication formats ............................................................................ 89 Figure 3.4: Apps: Valuable features and challenges ................................................... 96 Figure 7.1: Summary of the components in the final framework ............................... 182 Article 1 (Chapter 4) Figure 1: Examples Mmogo-method® – visual constructions and unedited narratives ... .................................................................................................................................. 105 Article 2 (Chapter 5) Figure 1: PRISMA flow diagram ................................................................................ 119 Article 3 (Chapter 6) Figure 1: An mHealth communication framework for rural caregivers of adolescents with mental health issues.................................................................................................. 143 xv LIST OF PHOTOS Photo 1.1: Example of containers with material ....................................................... 18 xvi LIST OF TABLES Table 1.1: Summary of six stages of a systematic review ............................................. 21 Table 1.2: Methodological integrity applied per phase .................................................. 25 Table 1.3: Possible measurement errors ....................................................................... 28 Table 3.1: Benefits of mHealth adoption ....................................................................... 70 Table 3.2: Barriers to mHealth adoption ........................................................................ 71 Table 3.3: Current South African legislation (acts, policies, frameworks, committees and associations) applicable to mHealth and caregivers ..................................................... 77 Article 1 (Chapter 4) Table 1: Characteristics of participants (n=17) ............................................................ 102 Table 2: Characteristics of adolescents being cared for by participants ...................... 102 Table 3: Themes and subthemes ................................................................................ 103 Article 2 (Chapter 5) Table 1: Application of the PICO ................................................................................. 116 Table 2: Search string used ........................................................................................ 116 Table 3: Summary of included articles ....................................................................... 118 Table 4: Summary of results reported by the 5 articles ............................................... 120 xvii LIST OF ABBREVIATIONS AND ACRONYMS AIDS Acquired immune deficiency syndrome DALY Disability-adjusted life year DSM Diagnostic and Statistical Manual DHMIS District Health Management Information Systems eHealth Electronic health HIV Human immunodeficiency virus ICT Information communication technology IMBP Integrated model of behaviour prediction IVR Interactive voice response LMIC Low and middle-income country mHealth Mobile Health MMS Multimedia services PHC Primary healthcare PICO Population, intervention, comparison intervention, outcome SMS Short messaging service WHO World Health Organization xviii PREAMBLE The layout of this thesis complies with the recommendations for a PhD through interrelated publishable articles, as presented within the Faculty of Health Sciences of the University of the Free State, South Africa. This thesis comprises interrelated publishable or published articles, in conjunction with introductory and concluding chapters, as opposed to the traditional format. This thesis has seven chapters. The first chapter presents an overview of the study, its aim, research questions, and methodologies. The second chapter introduces literature related to caregivers of adolescents with mental health issues, while the third chapter presents literature associated with mobile health communication and the caregiver. Chapter 4 presents a published article on the interest of rural caregivers of adolescents with mental health issues in using communication technology. Chapter 5 follows with a published article reporting a systematic review on caregivers of adolescents with mental health issues using communication technology. Chapter 6 describes the development process of a framework for an mHealth initiative to support rural caregivers of adolescents with mental health issues in a manuscript that is under review. Chapters 4 to 6 are interrelated, with each addressing one of the three objectives of the study. Chapter 7 presents conclusions, implications, and limitations of the study. Repetitive issues and concepts may be detected throughout this thesis due to interlinkages between articles contributing to the development of the framework. The researcher was responsible for developing and writing articles presented in Chapters 4 to 6. Each article indicates the respective contributions of the researcher and co-author. The particular journal and author guidelines are indicated. Each article is formatted according to the journal requirements, which causes stylistic disparities concerning font, line spacing, and referencing styles in Chapters 4-6. The main referencing style applicable to the rest of the thesis (Chapters 1-3 and 7) is the Cape Peninsula University of Technology (Harvard) method. xix SCHOLARLY CONTRIBUTIONS FROM THIS WORK Phase Presentation Publication Phase 1: 1. Jansen, R. & Reid, M. Interest in Jansen, R., & Reid, M. (n.d.-b). Interest Visual-based communication technology by rural caregivers in communication technology by rural narrative inquiry of adolescents with mental health issues: the caregivers of adolescents with mental Mmogo Method®. Oral presentation at the 7th health issues in South Africa: The Annual Free State Provincial Health Research Mmogo-method®. Issues in Mental Day, Bloemfontein (9 November 2018). Health Nursing. 2. Jansen, R. & Reid, M. Exploring rural https://doi.org/10.1080/01612840.2020. caregivers' challenges and their interest in 1774017 communication technology when caring for adolescents with mental health issues: using the Mmogo-method®. Poster presentation at the 16th International Conference on Communication in Healthcare (Porto, 2 September 2018). Phase 2: 1. Jansen, R. & Reid, M. Communication Jansen, R., & Reid, M. (n.d.-a). Systematic review technology support for caregivers of Caregivers of adolescents with mental adolescents with mental health issues: a health issues using communication systematic review. Poster presentation at the technology: A systematic review. JMIR SA ACAPAP National Congress, MHealth and UHealth. Johannesburg (25 May 2019). https://doi.org/10.2196/13179 Phase 3: 1. Jansen, R. & Reid, M. Components in Jansen, R. & Reid, M. A framework for Framework developing a communication technology developing an mHealth initiative to initiative for rural caregivers. Oral presentation support rural caregivers of adolescents at the 17th International Conference on with mental health issues. Submitted to Communication in Healthcare (San Diego, 29 Mass Communication and Society. October 2019). xx CONCEPTUAL AND OPERATIONAL DEFINITIONS Adolescent Adolescence is a period of developmental and human growth during the transition from childhood to adulthood. Transitions might disturb an adolescent’s daily functioning and affect their mental health (WHO, 2014; Dogra et al., 2002). The adolescent shifts, from being a dependent to an independent individual (Casey et al., 2010), and experiences cognitive, physical, social, emotional, and behavioural changes during this period (Halter, 2018; APA, 2002). An adolescent is described as a person between the ages of 10 and 19 (WHO, 2014), and includes a number of terms, namely child, youth, young adult, or young person (WHO, 2017). For the purpose of this study, the researcher will consider an adolescent to be between 10 and 19 years, with a mental health issue. Caregiver Caregiver refers to persons, usually parents and/or family members and relatives, friends and/or community members, such as neighbours, living with or near the care recipient (Dixe et al., 2019; Gérain & Zech, 2018; Brown & Brown, 2014; National Alliance for Caregiving & AARP, 2015; Deeken et al., 2003). There is generally a close relationship between the caregiver and the care recipient. Caregiving is informal in nature (Stavrou et al., 2017), in the sense that no professional training is required, no working contract or payment exists between the parties and there are no official working hours (NYC Department of Aging, 2017; Stavrou et al., 2017; Bastawrous, 2013; Reinhard et al., 2012). In this study, a caregiver refers to a parent, family member, neighbour or friend within the community who has accepted the informal responsibility of caring for an adolescent with a mental health issue. Framework Frameworks guide a researcher to plan, organise, identify and define interrelated concepts offering the foundation of a research process (Kivunja, 2018). Such a framework schematically serves as the conceptual underpinning of programme planning (Knowlton & Phillips, 2013; W.K. Kellogg Foundation, 2004). By developing a framework, the researcher can rationalise the theoretical constructs used in the research project (Polit & Beck, 2017). In this study, the researcher developed a mobile health communication framework applicable to caregivers of adolescents with mental xxi health issues. The framework is structured by the integrated model of behaviour prediction, and the theory-of-change logic model, with content populated by triangulated data obtained from phased data collection. The framework focuses on a rural setting. Mobile health communication Mobile health (mHealth) communication refers to wireless communication technology and a platform to support health services through the use of portable electronic devices, such as cell phones (Källander et al., 2013; Barton, 2012). For the purpose of this study, mHealth communication will refer to using mobile phones to support caregivers of adolescents with mental health issues. Mental health issues Defining mental health issues is challenging due to variable cultural interpretations of behaviour (Videbeck, 2020) and mental dysfunction (Halter, 2018). Mental health issues can be conceptualised as the middle ground between mental well-being and mental health disorders or illness (Halter, 2018). A mental health disorder/illness is associated with clinically significant criteria indicative of a specific diagnosis (American Psychiatric Association, 2013), while a mental health issue may present cognitive, emotional or behavioural problems (Veldman et al., 2015). Throughout this thesis, the term mental health issue will primarily refer to behavioural, emotional or cognitive problems that are observed, without it being formally diagnosed by a healthcare professional. Rural A rural setting pertains to factors that are environmental (sparsely populated, fewer houses and service providers), interpersonal (leisure lifestyle, traditional set of behaviours and beliefs) and intrapersonal (reluctant to make changes and social power structures) (Loue & Morgenstern, 2001). Additionally, a rural setting is characterised by a lack of urban economic core, poor infrastructure and transport challenges (Atkinson, 2014; Visagie & Schneider, 2014; Gaede & Versteeg, 2011). For the purpose of this study, rural area refers to the towns of Springfontein and Trompsburg in the Kopanong local municipality of South Africa. xxii Strengthening positive behaviour Behaviour refers to any action, intention, response, psychological reaction or feeling displayed by an individual, which is observable and measurable. Behaviour can occur under specific antecedent situations in conjunction with the environment. Behaviour that is beneficial to an individual, as well as other people, is positive behaviour (Abraham & Denford, 2017). Positive behaviour takes a variety of forms, such as understanding another’s needs, desires and goals, and supporting it. A positive consequence of the behaviour will motivate an individual to repeat that behaviour, a frequency in performing more positive actions (Fishbein & Ajzen, 2010; Zastrow & Kirst-Ashman, 2007). For this study, improved caregiving practices and behaviour demonstrated by the caregiver of an adolescent with mental health issues was considered to be positive behaviour. Positive behaviour will be explained through the integrated model of behaviour prediction. Such positive behaviour should be strengthened to ensure that it continues. xxiii CONTEXT OF THE RESEARCH Xhariep district is situated in the southwestern part of the Free State province of South Arica, covers an area of approximately 37 673.74 km², and has a population of approximately 146 000, making it the most sparsely populated district in the province. The population consists of Black Africans (72.52%), Coloured1 people (17.83%), White people (9.62%) and Asian people (0.04%). The main languages spoken in the district are Sesotho (45.32%), Afrikaans (31.56%), isiXhosa (15.81%), Setswana (3.51%) and English (1.60%). Statistics South Africa estimates that 69% of this population is below 35 years of age (Department of Health, Free State, 2018; Xhariep Municipality, 2011). Kopanong municipality falls under Xhariep district. Xhariep district comprises four local municipalities (Kopanong, Letsemeng, Mohokare and Naledi) and 20 towns. Kopanong municipality includes nine towns, of which two, Trompsburg and Springfontein, were the focus of the study. Trompsburg is classified as a village and Springfontein as a remote village. Each town has a primary healthcare clinic, and Trompsburg has a hospital. Both clinics are accessible to residents within five kilometres of town. Kopanong municipality forms the middle section of the district and covers the largest area of the Xhariep district, with a population of about 49 000 (Njenga, 2015; Xhariep Municipality, 2011). See Figure 1 below. Figure 1. Xhariep district with Kopanong municipality in the Free State province, South Africa Source: Department of Health, Free State (2018) 1 In southern Africa, the term Coloured has a specialised meaning in that it denotes a person of mixed racial ancestry. xxiv CHAPTER 1: OVERVIEW OF THE STUDY “You can only learn by opening yourself up to engage with different sources of information. How can you learn something if you never see it, read it or hear it?” -Fran Tarkenton2- 1.1 INTRODUCTION This chapter will provide a comprehensive overview of the thesis. First, the chapter will expand on relevant background to the study, which will be followed by the problem statement and the aim and associated research questions. Next, this chapter will explain the methodology and theoretical foundation of the entire research study. The researcher will, then, briefly introduce the three phases that comprised the study. Thereafter, the chapter will continue with a concise description of the rigor and trustworthiness of the study, and measurement errors. Lastly, the chapter will conclude with a summary and overview of how the thesis is organised. 1.2 BACKGROUND Mental health is a vital and important component of an individual’s health. It forms the foundation for healthy development and mental wellbeing. A mentally healthy individual displays self-awareness is self-directive, well adjusted and generally stress free, and demonstrates the ability to cope with normal daily stressors (Videbeck, 2020; Halter, 2018). Such individuals may experience some stress but can adjust to their circumstances due to effective underlying mental functioning (Nizette & Barkway, 2017). Risk factors contributing to the development of poor mental health are psychological, social, cultural, economic, and environmental in origin, e.g., genetics, deprived nurturing, poverty and negative life circumstances (Videbeck, 2020; Burns, 2016; United Nations, 2014). These factors can lead to regular and unsuccessful dealings with stressors, maladjustments, and maladaptive behaviour that impair daily functioning. Significant clinical deviations in functioning in the 2 https://www.inspiringquotes.us/author/2642-fran-tarkenton 1 biological, psychological, cognitive, behaviour and social domains can negatively impact the development of mental health, especially during adolescence (Burns, 2016). Adolescents are becoming increasingly prone to mental health issues due to multiple interacting factors in adverse circumstances in their daily lives (Nizette & Barkway, 2017; Scott et al., 2015). Childhood adversities and social determinants present a high risk for the development of mental disorders throughout a person’s lifespan. These factors contribute to adjustment problems in adolescents worldwide. Child and adolescent mental health contribute considerably to the global burden of diseases. Sadly, the mental health needs of this population in low and middle-income countries (LMIC) are generally ignored, despite the detrimental effects of mental health disorders and their consequences for the individual and the community (Nizette & Barkway, 2017; Burns, 2016; United Nations, 2014; Barry et al., 2013). It is important to understand how child and adolescent mental health forms part of the backdrop to the high prevalence of mental health disorders globally. Globally, mental disorders show a high prevalence, chronicity and morbidity. The World Health Organization (WHO) reports that untreated mental health disorders account for 13% of the total global burden of diseases (WHO Executive Board, 2011). Results from the Global Burden of Disease study in 2013 illustrate that the burden of mental health disorders increased by 45.0% from 1990 to 2013 (Vos et al., 2015). Mental and substance use disorders are the leading cause of the non-fatal burden of disease and disability worldwide. It is measured in disability-adjusted life years (DALYs) and accounts for 7.4% of the global burden of disease (Whiteford et al., 2013). According to global DALYs, mental and substance abuse disorders are nearly 1.3 times higher in developing countries (Whiteford et al., 2015), where they continuously contribute to the burden of disease. An increase of 130% in the burden of mental and substance use disorders are expected by 2050 (Whiteford et al., 2016), due to population increase. The world can expect to see gradual growth in population numbers. Over half of the worldwide population increase from 2017 to 2050 is expected to occur in Africa. Furthermore, 41% of the youth population in Africa in 2017 was under 15 years old, while 19% 2 were aged between 15 and 24 years (Nyamongo & Shilabukha, 2017; United Nations, 2017). An increase in population numbers of LMIC also presages an increase in mental health disorders (V. Patel et al., 2018), with a high onset during adolescence. According to the United Nations, the world youth population (15-24 years old) during 2019 was recorded as numbering 1.2 billion, with sub-Saharan Africa at 211 million (United Nations, 2019). South Africa’s population aged between 10 and 19 years numbered approximately 10 000 000 million (Stats SA, 2019) of whom, based on global estimates, 10-20% have mental health issues (De Menil & Glassman, 2015; Scott et al., 2015; Gore et al., 2011). Prevalence studies on adolescent mental health are lacking in South Africa (Mokitimi et al., 2019). Whiteford et al. (2013) report that mental and substance use disorders peak in adolescence, from the age of 10 years, causing disability primarily among this age group (Erskine et al., 2017). In South Africa, mental health disorders are the third- highest contributor to the local burden of disease, and the prevalence of mental health disorders in the child and adolescent group is increasing (Melorose et al., 2015). This increase in the prevalence of child and adolescent mental health disorders is cause for concern in South Africa. Severe emotional and behavioural difficulties are common among adolescents in South Africa, due to the diversity of the population that presents many challenges related to the variety of cultures, socio-economic statuses, belief systems, life stressors and languages (SA Federation for Mental Health, 2018; Jhazbhay & Karim, 2016). Cortina et al. (2012) found that, in South Africa, one in 10 children/adolescents has a specific mental health disorder, while one in seven children/adolescents has difficulties with mental health. Mental health issues are strong predictors for developing a mental health disorder. Unless it is detected early enough, a broad range of mental, emotional and behavioural issues may lead to the development of mental health disorders (Swaminathan, 2016). Adolescence is a challenging period due to the presence of abovementioned issues that could compromise people’s mental health. Failure to address these emerging issues can have a negative impact on adolescent development, as well as on their social, psychological and economic integration 3 (Burns, 2016; Paruk & Karim, 2016; Barry et al., 2013). A continuum of mental health issues raise concerns about adolescents’ mental well-being and daily functioning. Recognising these mental health issues during adolescent developmental stages may prevent the development of chronic disorders (Loughlin et al., 2017). Failure to detect mental health issues timeously could have a major impact on public health, with far-reaching consequences (Pinto et al., 2014; Patel et al., 2011), namely, an increase in the burden of non-communicable disorders, a lack of resources, and health inequalities (Dookie & Singh, 2012; Lund et al., 2012). These authors attribute the strain mental health issues cause for public health services to South Africa’s historical background, which caused inequalities in healthcare service delivery. Resource-constrained areas have additional pressing healthcare needs, including integration of mental health services, too few skilled healthcare professionals, poor infrastructure and limited resources (De Kock & Pillay, 2016; Thomas & Wightman, 2015). At the crossing point of mental health care solutions that enhance mental healthcare delivery, lies task shifting or sharing (Weinmann & Klinikum, 2016; WHO, 2008a). South Africa embarked on this pragmatic solution to address healthcare workforce challenges. Task shifting became a natural affair in rural settings when public healthcare demands increased (Maconick et al., 2018; WHO, 2008a). Shifting or sharing of healthcare responsibilities usually become the responsibility of community care workers, unspecialised or lay workers and informal caregivers (Musyimi et al., 2017; Kakuma et al., 2011). Informal caregiving roles are fulfilled by caregivers, such as parents, family members or even neighbours (Dixe et al., 2019; Gérain & Zech, 2018; Verbakel, 2018) taking care of various care recipients. Care recipients could include individuals with chronic conditions, physical or mental health difficulties (Stacey et al., 2012; Taylor-Brown et al., 2014). Caring for adolescents with mental health issues is burdensome (Bademli et al., 2017; Penning & Wu 2016; Oruche et al., 2012). Adolescents face a critical risk for developing mental health issues because of developmental transitions during adolescence, thereby challenging their caregivers. 4 Caregivers play a vital role during the adolescent’s developmental period, especially when they face adverse mental health issues and stressful situations. Some caregiver responsibilities include emotional and social support, psychosocial stimulation, lay counselling and activities relating to daily living and mental health awareness (Bauer & Sousa-Poza, 2015; Smith & Milano, 2014; Ambikile & Outwater, 2012). Research studies have identified particular challenges that caregivers experience when caring for adolescents with a mental health issue. These challenges include low public awareness and, consequently, little social support, as well as unmet caregiver needs related to the identification and handling of mental health issues. These challenges aggravate the caregiver’s sense of being stigmatised by the community due to the adolescent’s “behaviour”, and are exacerbated by caregiver’s lack of knowledge (Kelleher, 2019; Steding, 2016). Caregivers are oblivious to “problematic mental health behaviour” because they possess limited information and receive little support in relation to dealing with adolescent developmental transitions and known occurrence of mental health issues (Kelleher, 2019; Leventhal, 2018). Caregivers in South African households may experience particular difficulties due to extended family composition, considering that members from several generations often live in a single home (Martin & Zulaika, 2016). These living arrangements could contribute to caregivers being burdened by a variety of responsibilities, which causes the signs of possible mental health issues in adolescents in their care being overlooked. Caregivers are uniquely positioned to notice any behavioural or mental health changes in adolescents, but sometimes fail to do so (Sayal et al., 2010). Alternatively, caregivers are not knowledgeable enough about mental health issues to detect signs of mental health issues (Clack, 2016), causing challenges that impact caregiver and adolescent well-being. Consequently, adolescents depend on their caregivers to identify mental health issues and seek help for them. Help-seeking behaviour is restricted by caregivers’ perceptions and lack of information about mental health issues (Reardon et al., 2017). Using health services is curtailed by the caregivers’ attitudes and beliefs about mental health issues (Steding, 2016). Caregivers also have trouble conversing about emotional or behavioural matters with healthcare professionals, due to embarrassment and stigmatisation of mental health 5 issues. Similarly, caregivers’ cultural beliefs influence their views on the appropriateness of discussing it with healthcare professionals. Rurality also contributes to challenges experienced by caregivers of children with mental health issues, particularly isolation, poverty, lack of knowledge, increased stigmatisation and limited availability of services (Halter, 2018; Patil et al., 2016; West, 2013). Patel et al. (2016) and Robila (2016) state that caregivers play an important role in preventing mental health issues, especially at community level. Addressing caregiver challenges and their unmet needs could enhance caregiving practices, thereby assisting in preventing mental health issues (Stavrou et al., 2017; Feinberg & Levine, 2015). Several unmet support needs, including informational (Ford et al., 2016), training (Kadungure, 2017), social support (Reardon et al., 2017), emotional support (Talley et al., 2014) and spiritual support (Pelentsov et al., 2015) are documented in the literature. Caregivers’ support needs should not be neglected. It is important to support rural caregivers in their caregiving practices of adolescents with mental health issues with applicable initiatives. Supporting these caregivers through information could potentially strengthen their caregiving behaviour and ensure improved caregiver well-being and outcomes for adolescents (Stavrou et al., 2017). 1.3 PROBLEM STATEMENT Traditional technologies used various media, that is, television, radio, and landline telephone, to disseminate health information to large audiences (Noar & Harrington, 2012; Tanvatanakul et al., 2007). Modern communication technologies, including mobile phones, computers and the Internet, are beneficial for healthcare services, because it can reach people in resource-poor settings, deliver information to large audiences, and enable access to healthcare services (Hollis et al., 2015; David, 2001). Communication or digital technologies terminology is used interchangeably in the literature. Digital healthcare technologies (digital health) emerged from electronic healthcare (eHealth) and were tapered into mobile health (mHealth) technology (Istepanian & Woodward, 2017; Mechael et al., 2010). The promise mHealth communication technology, e.g., mobile phones and other mobile devices, holds for transforming healthcare has captivated researchers for over a decade (Marin et al., 2017; Wilhide III et al., 2016). 6 Pienaar (2015) reports that using mobile cellular interventions in South Africa has positive effects, and can be an effective health communication strategy for chronic disease management. Mobile phones have the potential to change healthcare across the globe, and particularly in LMICs, where healthcare infrastructure and services are often inadequate (Watkins et al., 2018; Farrington et al., 2014; Kahn et al., 2010). According to the latest available statistics, around 91% of South African households have access to at least one mobile phone (Pew Research Centre, 2018). Opportunities for exploiting mobile communication technology in healthcare have developed over the last few years due to high mobile phone penetration. Mobile communication technology has the potential to improve access to healthcare in primary care settings (Aceto et al., 2018; Perrino et al., 2018; Källander, 2010). Mobile phones can be used to support and/or deliver mental healthcare among various enterprises and populations, emphasising practical, cheap and easy-to-use resolutions in resource-poor settings. mHealth technologies offer new capabilities for caregivers to get support and information regarding caregiving practices (Aceto et al., 2018; Malvey & Slovensky, 2014). Embracing the use of mHealth communication technology in resource-poor settings has huge potential for providing support to caregivers assisting in caregiving behaviour. It can be beneficial to caregivers to have continuous access to information regarding adolescents with mental health issues. mHealth initiatives targeted to support caregivers during caregiving practices could influence their caregiving behaviour (Chacko et al., 2016; Buhi et al., 2013). Yesufu-Udechuku et al. (2015) support initiatives that focus on the needs of those who care for people with mental health issues. These authors suggest that carer-focused initiatives can be valuable to healthcare services, because of the central role that caregivers play in rural mental healthcare. Daily caregiving activities of caregivers should be strengthened by applicable initiatives that assist caregiving behaviour. Caregiver behaviour initiatives are imperative to increase their management, problem-solving and social skills (León- Del-Barco et al., 2019), as is experiencing positive emotions towards caregiving (Brown & Brown, 2014). Rexhaj et al. (2017) and Rimer and Kreuter (2006) mention 7 that developing such caregiver initiatives should be an end-user, rather than a top- down approach. It is critical to design a framework that will transform existing knowledge, behaviour, skills and practices into a mHealth initiative that supports caregivers of adolescents with mental health issues. A framework detailing all components for the proposed initiative should guide the process of planning an initiative (Yardley et al., 2015; Van Houtven et al., 2011). Such a framework could transform current mental health practices of primary healthcare (PHC) clinics by using mHealth initiatives in a transparent, universal and standardised way, thereby augmenting the continuum of care between caregivers and PHC. In order to transform healthcare behaviour through mHealth technologies, we must consider which aspects of mHealth “work”, for “which” mental health issues, for “whom” and to achieve “what” outcomes. Developing a framework must include thoughts of how to weave the use and usability of a mHealth initiative into its foundation. Developing a framework for a mHealth communication initiative will work towards supporting rural caregivers of adolescents with mental health issues in a resource- poor setting. This framework should be an end-user (caregiver) initiative that contributes to supporting their caregiving behaviour. 1.4 RESEARCH QUESTION What should an mHealth communication framework that is to be used by rural caregivers of adolescents with mental health issues in the Kopanong local municipality consist of? 1.5 AIM The aim of this study was to develop an mHealth communication framework for rural caregivers of adolescents with mental health issues in the Kopanong local municipality. 8 1.6 OBJECTIVES The objectives will contribute to achieving the main aim of the study, and will be pursued in three phases:  PHASE 1: To explore rural caregivers’ interest in using communication technology to provide support addressing their challenges.  PHASE 2: To systematically review literature on the best evidence available to strengthen positive behaviour of caregivers of adolescents with mental health issues using communication technology.  PHASE 3: To describe the development of an mHealth communication framework for rural caregivers of adolescents with mental health issues in the Kopanong local municipality. 1.7 THEORETICAL UNDERPINNING OF THE STUDY This research study was guided by the development of a complex intervention as presented by the Medical Research Council of the United Kingdom that addresses only the developmental stage of the complex intervention (Medical Research Council, 2000). Complex interventions may consist of programmes that are intended to change individuals’ behaviour by developing a theory of change framework (Craig et al., 2019; W.K. Kellogg Foundation, 2004). Integral to theories of change within complex interventions, are empirical evidence, contextual influences and desired outcomes (Dhillon & Vaca, 2018; Leeman et al., 2015; W.K. Kellogg Foundation, 2004). Applying a multiple method design in this study contributed to building an evidence base for the complex intervention, including a logical evidence base for the theory of change components. See Figure 1.1: Positioning of the study’s development stage within the complex intervention. 9 Phase 1: Visual-based narrative: This phase a imed to explore rural caregivers’ interest in using communication technology to provide support that addresses their challenges. Phas e 2: Systematic review: T his phase intended to review literature on the best evidence available to strengthen positive b ehaviour of caregivers of adolescents with mental health issues using communication technology. Phas e 3: Validation workshop: This phas e aimed to describe the development of an mHealth communication framework for rural caregivers of adolescents with mental health issues in the Kopanong local municipality. Figure 1.1: Positioning of the study’s development stage within the complex intervention 10 A theory provides the conceptual underpinning of a study by structuring the research process in an organised way according to the vision of the researcher. This blueprint provides the foundation for the construction of each step in the research process and supports decisions that were made to execute it (Grant & Osanloo, 2014; Glanz et al., 2008). Several theoretical frameworks concerning the process of behaviour, behaviour prediction and behaviour change can be used to understand behaviour. More importantly, such theories are critical tools for guiding planning, implementing, and evaluating initiatives. Theoretical frameworks have the potential to inform decision-making, influence caregivers’ behaviour by changing or strengthening it, and provide insight into individual or organisational determinants of intervention adoption (Davis et al., 2015; French et al., 2012; Yzer, 2012). Recognising determinants of particular behaviour may be the first step in designing initiatives that will be successful in diverse populations, especially in healthcare. Behavioural performances of diverse individuals, groups and communities are complex to understand and must be taken in consideration when trying to explain (Fishbein & Ajzen, 2010; Fishbein & Cappella, 2006) a theory of change. 1.7.1 Theory-of-change logic model Rogers (2014) refers to logic models and theories of change concurrently, while the W.K. Kellogg Foundation (2004) distinguishes between three approaches to logic models, namely, theory, outcomes and activities that influence programme development. A programme in a theory-of-change logic model is defined as the theory of change, intervention, event, policy or strategy, and does not refer to a formal programme. The way that a programme is designed suggests that it will lead to specific outcomes and implies some type of theory of change. A theory of change presents a reasonable explanation of the developmental process related to the intended programme (Rogers, 2014; W.K. Kellogg Foundation, 2004) to improve understanding of a complex process. The theory-of-change logic model reasons that "if" something is done for the programme population, "then" their behaviour will change (Dhillon & Vaca, 2018; 11 Funnell & Rogers, 2011; W.K. Kellogg Foundation, 2004). The programme referred to in this study is a programme for caregivers of adolescents with mental health issues. The assumption is that, if rural caregivers are supported, their caregiving behaviour might become more positive towards the adolescent with mental health issues. The framework is expected to trigger the theory of change in caregivers. Thus, the theory-of-change forms the basis in the program development by describing the initiative needed to guide that change in behaviour. The planning of a theory-of-change logic model framework includes several components explicit to the programme construction. The framework planning focuses on a series of components, namely, 1) the problem statement (the problem the programme wishes to solve), 2) needs of the community (in this study, community refers to caregivers, and needs that relate to the problem), 3) desired results (what the programme expects to achieve), 4) influential factors (barriers/facilitators influencing the community), 5) strategies (identified, evidence- based strategies) and 6) assumptions (belief in the programme’s value) (Knowlton & Phillips, 2013; Funnell & Rogers,2011; W.K. Kellogg Foundation, 2004). (Refer to Figure 1.2 Theory-of-change logic model diagram.) The framework development followed a phased approach (Campbell et al., 2000), which allowed the researcher to propose an mHealth communication initiative for rural caregivers of adolescents with mental health issues. Three consecutive studies were performed to develop the framework and the findings of the multiple research methods were integrated. 12 Figure 1.2: Theory-of-change logic model diagram Source: W.K. Kellogg Foundation (2004) A complex intervention provides a rationale for how behaviour change can be achieved through a programme that is based on several interactive research components (Craig et al., 2019). The programme in the theory-of-change logic model framework of the current study focused on supporting caregivers. A gap potentially exists between caregivers’ unmet needs (what is) and the support they need (what should be); this gap could be addressed by the framework. An adequate programme could help caregivers who are intended to receive the mHealth initiative engage in improved caregiving practices, even in complex settings. Programs to support caregiving behaviour should include elements to illustrate behaviour change practices. 1.7.2 Integrated model of behaviour prediction In this study, the researcher decided to use the integrated model of behaviour prediction (IMBP) to describe the determinants of the caregivers’ intention to behave, or not to behave positively when caring for adolescents with mental health issues. This thesis leads to the way IMBP determinants can predict positive caregiver behaviour if they are supported by an mHealth initiative. In this respect, this thesis 13 developed a framework that proposes an mHealth initiative that articulates the behaviour change process in rural caregivers who receive such an intervention. In this study, the researcher decided to use the integrated model of behaviour prediction (IMBP) to describe the determinants of the caregivers’ intention to behave, or not to behave positively when caring for adolescents with mental health issues. The IMBP (presented in Figure 1.3) resulted from the integration of several components of various health behavioural theories (including theory of reasoned action and theory of planned behaviour). The concept of self-efficacy as described by Bandura was also incorporated, instead of perceived control. The IMBP is a natural fit in behavioural healthcare (Yzer, 2012; Glanz et al., 2008; Bandura, 1982). Specific determinants provide clues on how intention in relation to behaviour is influenced by key constructs within the IMBP (Admiraal et al., 2013; Fishbein & Cappella, 2006). Figure 1.3: Integrated model in behaviour prediction diagram Source: Fishbein and Cappella (2006) According to the IMBP, behaviour is impacted by intention, environmental factors (constraints or facilitators), and skills. Intention is influenced by three primary 14 determinants, that is, attitude, perceived norms and self-efficacy. Underlying beliefs about the outcome of performing the behaviour, normative beliefs, and efficacy in carrying out behaviour are influenced by the individual’s attitude, perceived norms and self-efficacy. Culture, demographics, media, socio-economic variables and individual differences affect the underlying beliefs. All these predictors, in turn, influence the intention to behave in a certain way (Cao et al., 2014). Predictors of intention, attitudes, norms and self-efficacy in relation to performing given behaviour may differ according to population and culture. In addition to these determinants, performance of the behaviour can be positively or negatively be influenced by skills and environmental factors. An individual may be motivated to act on intentions, but may not have the abilities (skills) and environmental means to do it. Recognising these determinants that influence the intention to perform behaviour is important in the planning of mHealth initiatives (Fishbein & Ajzen, 2010; Glanz et al., 2008; Fishbein & Cappella, 2006). The IMBP can inform the researcher about the intentions of a specific population to perform specific behaviour, or not (Pember, 2017). These predictors determine behaviour, either separately or in a combination (Fishbein & Ajzen, 2010; Glanz et al., 2008; Fishbein & Cappella, 2006). The description of the integrated model above makes it clear that behaviour can be influenced through changes in behavioural skills, environmental factors, and behavioural intention. The researcher critically examined the theoretical stance that associates best with multiple methods research and aligned it with a pragmatic approach. 1.8 DESIGN OF THE STUDY This section presents a description of the overarching research approach, the paradigm and the research design. This PhD study adopted a multiple method research design. A multiple method research design is susceptible to various methodological formations, unlike a mixed methods design which can only involve qualitative and quantitative methods. Multiple method designs are adept at addressing various questions posed at each stage and related to the research problem (Hunter & Brewer, 2015). Asking appropriate questions to address the research problem may indicate the necessity to use multiple methods of data 15 collection. A multiple method approach tends to shape the research by triangulating data and findings so that conclusions can be drawn, thereby contributing to new knowledge (Maxwell et al., 2015). The various data collection methodologies enabled the researcher to corroborate the findings in a pragmatic way, and to finalise the framework development. 1.9 RESEARCH APPROACH AND PARADIGM Pragmatism is the underlying philosophy of the research methodology in this study. The idea of pragmatism is embedded in the practical conduct of the research process, by identifying what works the best in answering the research question (Morgan, 2014; Teddlie & Tashakkori, 2009; Johnson & Onwuegbuzie, 2004). A pragmatist will adopt the most practical approaches to address the research questions (Teddlie & Tashakkori, 2009). Situating the study in a pragmatic paradigm resonated with the researcher’s adaptability in the choice of research methods to answer the research questions. Doing so ensured fewer restrictions on how the researcher carried out the research. Pragmatists emphasise understanding shared meanings – either between two individuals or between different research fields (Morgan 2007). Additionally, Morgan (2014) states that a pragmatic approach is particularly appropriate for analysing human behaviour and solving problems practically, rather than philosophically. Human behaviour can be unpredictable and can influence a study’s findings, but taking a pragmatic stance prepares a researcher for adapting to unexpected findings. Triangulation of the findings of multiple methods may justify the answer to the research question. Central to pragmatism is the application of multiple research methods to answer the research questions; the practical value of dealing with the research problem is embraced. Researchers draw upon the strengths of multiple research methods by aligning themselves with different methodological worldviews (Brierley, 2017; Teddlie & Tashakkori, 2009; Morgan, 2007). The researcher’s pragmatic stance leads to her intention to implement multiple methods of research, due to her practical nature as an individual who wished to defend her philosophical limitations. Combining multiple methods based on pragmatism may produce findings that are greater than the sum of the parts. Applying pragmatism enables researchers to employ quantitative or 16 narrative sources of data, thereby facilitating interpretation of multidimensional experiences (Morgan, 2014; Morgan, 2007). In the current study, the researcher combined multiple methods in order to comprehend the knowledge that would be generated from pragmatic actions, to find a viable solution to the research problem. The following sections will present each phase individually, by introducing three distinct research methods that were used by the researcher to address the research aim. 1.10 PHASE 1: RURAL CAREGIVERS’ INTEREST IN USING COMMUNICATION TECHNOLOGY This section serves as a brief introduction to Phase 1 and presents the research method, information on population and sampling, data collection and the analysis process. The researcher employed the Mmogo-method® to explore rural caregivers’ interest in using communication technology to provide support to address their challenges. 1.10.1 Research method The Mmogo-method® is a visual-based narrative inquiry that was developed by Vera Roos. Visual-based narrative inquiry employs images and words/text in a partnership to make meaning of participants’ experiences in a visual way. The Mmogo-method® is a culturally sensitive and structured data collection technique (Roos, 2008). This pragmatic engagement gave the researcher an opportunity to obtain insight into caregivers’ experiences while caring for adolescents with mental health issues and, furthermore, to explore their interest in using communication technology to support their caregiving practices. The Mmogo-method® is an interactive process, during which individuals in a group consisting of six to ten participants, first, create their own visual presentations with given material and, thereafter, share it in a group discussion. The material provided should be familiar in the study population’s community and, in this case, examples may include clay, grass stalks, wood pieces, beads or wire. (See Photo 1.1 Example of containers with material.) This method depicts insight into the participants’ social, 17 cultural and contextual interactions through shared meanings. Their visual constructions made of cultural material may possibly project their thoughts and behaviour related to the prompt (Roos, 2016; Grobler & Roos, 2014; Chigeza et al., 2013). Roos (2008) propose to use an open-ended prompt, phrased as a statement, to ask in the Mmogo-method® underpinning the proposed research question. Data collection through the Mmogo-method concludes when the researcher photographs all the constructions (Roos, 2016; Hanson, 2012; Roos, 2008). Photo 1.1: Example of containers with material 1.10.2 Population and sampling The study population comprised caregivers of adolescents with mental health issues in the Kopanong municipality. The researcher conveniently focused only on two of the nine towns under the Kopanong municipality, namely Trompsburg and Springfontein. These two towns form part of the collaborative practice learning platform for students of the Faculty of Health Sciences at the University of the Free State. Participants were recruited with the help of community care workers known through this existing network of stakeholders. The community care workers and school employees assisted the researcher to identify caregivers who had been observed to have adolescents experiencing mental health issues. Participants were, then, purposively selected according to predefined inclusion criteria, namely, that they were the primary caregivers of adolescents with mental health issues (refer to the operational definition), and that they agreed to participate in the study. The 18 sample size for the study was determined by reaching data saturation in applying the Mmogo-method®. 1.10.3 Piloting and refining the Mmogo-method® Due to the novelty of the Mmogo-method®, the researcher piloted the first Mmogo- method® group discussion during September 2017 with participants residing in Trompsburg. The researcher realised that the prompt needed some refinement, and some logistical adjustments were needed for the planned data collection. Data gathered here were not included in the main findings. 1.10.4 Data collection For the purpose of this phase, data were gathered via the Mmogo-method®. All participants were informed about the data collection process, including that photographs would be taken and audio recordings made, their rights and the voluntary nature of research studies. Permission to conduct the study was obtained from all stakeholders and participants (Addenda B, C, E). Data collection took place during September 2017 in Springfontein and Trompsburg. All groups were facilitated by the researcher, who is experienced in relation to communication skills, assisted by community healthcare workers, who acted as fieldworkers. Data were then collected by applying the Mmogo-method® and presenting the open- ended prompt. The prompt was in Afrikaans, and translated as: ‘Please make a picture that depicts the relationship between yourself and the adolescent with the mental health issue that you care for’. Any needs voiced by the participants related to advise, information or the desire for knowledge, were explored further to address the aim of this phase. All these discussions were audio-recorded. Participants’ involvement in the Mmogo-method® discussions contributed to the verification of meanings voiced by an individual through member-checking. Member checking ensures the accurate reflection of a participant’s description of their accounts, as confirmed by other participants (Teddlie & Tashakkori, 2009). Group discussions concluded with photographs being taken, refreshments being served and debriefing by the researcher. 19 1.10.5 Data analysis Group discussions that had been recorded were later transcribed verbatim by a professional transcriber and then translated into English. These transcribed texts were analysed thematically and independently by the researcher and a co-data analyst. Analysis of textual data (audio recordings) followed the six steps proposed by Clarke and Braun (2013). The six steps are to familiarise oneself with the data, to code the data, to search for similar themes, to review themes, and to define, name and write the themes up. The researcher and co-data analyst each went through these steps independently. Additionally, the researcher and co-data analyst examined the visual data (photos taken of participants) according to the six-step analysis proposed by Roos and Redelinghuys (2016). This six-step approach involves a description of the participants’ context, taking an empathic viewpoint, and describing the visual elements depicted on each photo, both literally, as well as the symbolic meaning attributed to it by the participant, defining participant-introduced context and, lastly, conducting an explanatory analysis. Afterwards, both the researcher and co-data analyst triangulated themes developed from the textual and visual data. 1.11 PHASE 2: SYSTEMATIC REVIEW Next, the researcher conducted a systematic review as Phase 2 of the study in order to search for the best available evidence on using communication technology with caregivers of adolescents with mental health issues. This is the first time, to our knowledge, that a systematic literature review, on this topic has been done. The researcher was guided by the seven-step approach of Higgins and Green (2008), though only the first six steps of the systematic review were implemented, as summarised in Table 1.1. Where Higgins and Green propose formulation of concluding statements as a seventh step, the researcher organised data into thematic conclusions after the sixth step. 20 Table 1.1: Summary of the systematic review’ six steps Step 1 Identification and formulation of a focused review question Step 2 Generation of a search strategy Step 3 Execution of the search and selection of the relevant studies Step 4 Performing the critical appraisal and evaluating the methodological quality of selected studies Step 5 Extracting data Step 6 Analysing and synthesising the data 1.11.1 Review question The question that guided the systematic review process was based on the PICO format (PICO = population, intervention, comparison intervention, outcome) (Gough et al., 2012). The aim of the question was to provide a critical review and synthesis of the best available evidence about the topic. The following question was set for this study: “What is the best evidence available to strengthen positive behaviour of caregivers of adolescents with a mental health issues using a mobile health communication intervention?” 1.11.2 Search strategy A systematic review was done to identify, appraise and discuss available literature on the best evidence available to strengthen positive behaviour of caregivers of adolescents with mental health issues using communication technology. A systematic review involves an examination of research literature; the examination is undertaken systematically and explicitly according to a detailed plan, in order to answer a research question (Munn et al., 2018; Yost, 2014; Gough et al., 2012). This systematic review was registered in PROSPERO (CRD42018094680), and the review was carried out in line with PRISMA guidelines. A systematic search was conducted of the literature from 1 January 2007 to 2 August 2018 on electronic databases that included the platforms EBSCO Host and Scopus database. No language or study design restrictions were applied. A senior 21 librarian used a search string with Boolean operators to retrieve articles suggested by the researcher and promotor. 1.11.3 Eligibility criteria and selection procedure For the purpose of this review, the researcher was interested in articles focusing on pre-identified eligibility criteria with the following characteristics, based on the PICO:  Population: Caregivers, namely families, parents, siblings and relatives of adolescents with mental health issues (concentrating on depression, anxiety and substance use disorders).  Intervention: Articles that reported on communication technology interventions.  Comparison: Routine communication technology.  Outcome: A description of IMBP outcomes depicted among the caregivers after using communication technology. Articles were excluded if the focus was only on adolescents, reported on mental- health-related therapies or traditional communication interventions. All articles retrieved from the search were filtered against the review question and eligibility criteria, focusing on the title and abstracts. Full-text articles of potentially relevant studies were then retrieved and reviewed independently by the researcher and the promotor. 1.11.4 Quality appraisal The study appraisal involved evaluating quality by using the critical appraisal skills programme (CASP) (2014) and Joanna Briggs Institute (2014) assessment tools applicable to each study design. Two senior researcher assisted with the critical appraisal process (see Addendum F). Furthermore, the researcher determined the hierarchy of methodology and the classification system in terms of research design according to the American Dietetic Association scoring system (2012). 22 1.11.5 Data extraction, analysis and synthesis After the critical appraisal, all data were extracted into a table in a Word document. This document contains columns to describe the studies and classify the extracted data related to methodology, outcomes and intervention, critical appraisal and study findings related to the IMBP (see Addendum G). A meta-analysis was not feasible, due to the heterogeneous nature of studies that were included. The researcher carried out thematic data analysis and synthesis. The promotor checked extracted data and coding. 1.11.6 Development of draft framework The researcher developed a draft framework informed by the theory-of-change logic model for an mHealth communication initiative to support rural caregivers. Drafting this framework was based on triangulation of research findings from Phases 1 and 2 as well as additional literature. The researcher developed the draft framework by outlining components relating to assumptions, the problem statement, community needs, desired results, influential factors and evidence-based strategies. 1.12 PHASE 3: VALIDATION WORKSHOP Phase 3 aimed to validate the draft framework for an mHealth initiative for rural caregivers of adolescents with mental health issues, developed based on the data form phases 1 and 2, by visualising the components while being guided by the theory-of-change logic model. The process of generating a framework based on the theory-of-change logic model is more effective when a comprehensive range of participants is involved during the development (Shakman & Rodriguez, 2015; Knowlton & Phillips, 2013; W.K. Kellogg Foundation, 2004). 1.12.1 Population The researcher purposively invited expert stakeholders working in, or involved in various mental health fields, as well as key role players in policymaking related to adolescents, to participate. These stakeholders consisted of interprofessional 23 experts from the Department of Health, the Free State Psychiatric Complex, a church organisation and academia. 1.12.2 Validation workshop This one-day workshop was held on 20 November 2019 in the NARS Building at the School of Nursing of the University of the Free State. This venue was accessible to all the stakeholders and conducive to present such a workshop. The facilitator informed the stakeholders of their rights, supplied information leaflets (Addendum H) and asked their permission to audio record the session. She also explained the workshop process and sought written consent (also Addendum H). The researcher then presented the study’s background, aim and findings from Phases 1 and 2. Then, the promotor facilitated the workshop by introducing each component of the draft framework to the stakeholders. She facilitated the workshop through a “forward and backward mapping” process. 1.12.3 Finalising the framework The facilitator used a mapping process throughout the validation workshop, thereby verifying all the framework components. This forward and backword mapping ensured clarity for all parties involved. The expert stakeholders reached consensus about the draft framework, which made it possible to finalise the framework. 1.13 METHODOLOGICAL INTEGRITY Methodological integrity in multiple method research studies determines the trustworthiness, quality and legitimacy of activities undertaken during the research process (Frels et al., 2015; Onwuegbuzie et al., 2011). The researcher ensured methodological integrity during each phase. Table 1.2 indicates the methodological integrity applied in each phase. 24 Table 1.2: Methodological integrity applied per phase Phase Elements of quality Application Phase 1: Credibility: truth in the findings Triangulation of textual and visual Visual-based data. Member checking during narrative inquiry group discussion. Dependability: consistency in Triangulation of textual and visual results data. Audio recordings, audit trials, detailed documentation. Transferability: applicability to other Rigorous methodology, description settings of study context. Confirmability: accuracy of the Data collection by researcher findings assisted by community healthcare worker (fieldworker). Authenticity: presentation of reality Contextual description and photographs Verisimilitude: believability and Recordings and photographs of truthfulness group discussions. Phase 2: Rigour Used multiple sources of data Systematic (electronic data, checked reference review list, grey literature and contacted author). Methodological quality and bias Used applicable appraisal tools relevant to study design, multiple senior researchers assisted in quality appraisal. Transparency Record-keeping was meticulous. Phase 3: Inference quality Audit trial of conclusions made Workshop based on findings of Phases 1 and 2. Design quality Workshop as most appropriate research method implemented to address Phase 3 question. Interpretive rigour Interpretation and integration of findings from Phases 1 and 2 depicted in draft framework confirmed by stakeholders. Validity Expert stakeholders participated in finalising the framework 25 1.14 ETHICAL CONSIDERATIONS The Singapore Statement (World Conferences on Research Integrity, 2010) guided the conduct of the researcher in this research study. This conduct should be characterised by professional responsibility, which is fundamental to the integrity of the research. Four ethical principles of the Singapore Statement that are fundamental in guiding the research process are honesty in all aspects of research, accountability in the conduct of research, professional courtesy and fairness in working with others, and good stewardship of research on behalf of others (Lucas, 2010; World Conferences on Research Integrity, 2010). Ethical clearance was obtained from the Health Sciences Research Ethics Committee of the University of the Free State (HSREC 47/2017 (0349) (Addendum B), as well as institutional approval from the Free State Department of Health (Addendum C). Permission was also granted by the Health Sciences Research Ethics Committee to change the study’s title (Addendum D). The researcher implemented the following ethical considerations. 1.14.1 Honesty in all aspects of research The researcher explained and disclosed the research process thoroughly to all the participants during Phase 1 and Phase 3. A detailed and honest description of the methodological approaches was provided through information leaflets (see Addenda B, C, E, H). The systematic review presented an accurate representation of data extraction and interpretation. All the contributions that were made are acknowledged in the articles. The researcher is forthright about limitations in the data collection findings during the first two phases and did not omit any information or deceive any member participating in the workshop. 1.14.2 Accountability in the conduct of research The researcher was sensitive about participants’ emotional state during the Mmogo- method® conducted in Phase 1. She did not exploit any participant or expose participants to any risks during the data collection. During the systematic review, the researcher avoided plagiarism and conducted a transparent review. The researcher 26 maintained ethical standards during the workshop and managed data with confidentiality. The researcher recorded all documentation pedantically during all the phases. 1.14.3 Professional courtesy to and fairness in working with others The researcher acted professionally throughout the research process, especially when in contact with participants, by adhering to all ethical guidelines. A fair representation of the research study and participants’ experiences was maintained. The researcher cooperated well with the expert stakeholders, in a professional manner, and accepted their contributions during the workshop. 1.14.4 Good stewardship of research on behalf of others The researcher reflected the “voice” of the participants and did not reflect her own perspectives during Phase 1. She avoided selection and language bias by conducting Phase 1 in the language of the participants’ choice. Involvement of all the participants were acknowledged in the dissemination and publication of research without making their identities decipherable from the published data. 1.15 MEASUREMENT ERRORS Errors may occur in research measurement. Adhering to the principles of quality research, these errors should be clearly defined, described and documented during all the steps of the study (Brink et al., 2012). See Table 1.3 for examples of possible measurement errors, as well as what the researcher did to limit the impact of such errors on the project. 27 Table 1.3: Possible measurement errors Phase 1: Visual-based narrative inquiry Errors were limited through: The participants might be concerned that Informed the participants that they will only participating in the study will be time- participate in one group session. consuming and this could influence their willingness to participate. Language bias Assisted by community healthcare workers Participants may be concerned that their Made it clear confidentiality was an important personal information would not be kept factor of the study and that there were confidential. measures in place to ensure that the data are kept confidential Methodological bias Multiple data sources used (textual and visual data) Data triangulated Truth value There was member checking during group discussions Over involvement of researcher All observations were recorded by the researcher and fieldworkers throughout the study Biased sampling Voluntary and available caregivers participated Phase 2: Systematic review Errors were limited through: Insufficient search strategy A focused review question was stated. A comprehensive search strategy (multiple sources) was done. Used appropriate databases. An experienced librarian assisted. Studies met the inclusion criteria. Selection bias Electronic databases, reference list checking and contact with authors were representative of research. All identified studies were appraised. Publication bias Grey literature (dissertations and book chapters) were included. Language bias English-language literature, as well as studies in languages other than English, but with an English abstract, were included in the study. 28 Poor quality publications Utilised critical appraisal tools. Used two senior researchers. Poor selection of studies Defined clear inclusion and exclusion criteria. Thorough documentation were done Phase 3: Validating workshop Plan to limit the errors through: Credibility Involved expert stakeholder and inter- professional team members. Methodological rigour The IMBP and logic model assisted in development, with logic model providing structure of framework. Validity Validated by expert stakeholders. Triangulation Data triangulated from multiple sources during the study. 1.16 STRUCTURE OF THIS THESIS This thesis is organised into seven chapters, each with its specific focus. Chapter 1, the introductory overview, is followed by Chapters 2 and 3, which expand on the background literature relevant to this study. These chapters review the existing literature and offer insight into what has already been researched and, thus, what is currently known about the research topic. Chapter 2 focusses on literature related to the caregiver and the adolescent with mental health issues. In Chapter 3, the researcher discusses literature on mobile health communication technology and the caregivers of adolescents with mental health issues. Chapter 4 reports on the first phase of this research. In this phase, the Mmogo-method® was used to explore caregivers’ interest in using communication technology to support them while caring for adolescents with mental health issues. This article was accepted for publication in the journal, Issues of Mental Health Nursing, May 2020. Chapter 5 introduces the second phase. This chapter focusses on a systematic review of the literature to investigate the best evidence that is available to strengthen positive behaviour of caregivers of adolescents with mental health issues, by using communication technology. This article was accepted for publication in the journal, JMIR mHealth and uHealth, May 2020. Chapter 6 addresses the third phase of the study. This 29 chapter describes the validation workshop and introduces the final framework informed by the theory-of-change logic model, while the IMBP is used to explain how behaviour change can occur. This article is under review by the Mass Communication and Society journal. Chapter 7 concludes with a summary of the research, factual conclusions, conceptual conclusions, implications, recommendations, limitations and concluding remarks. 30 CHAPTER 2: LITERATURE REVIEW: CAREGIVERS OF ADOLESCENTS WITH MENTAL HEALTH ISSUES “Investigate what is, and not what pleases” -Johann Wolfgang von Goethe3- 2.1 INTRODUCTION This chapter provides context to the study, and strengthens the rationale of the research by examining local and international literature related to the topic of caregivers and adolescents with mental health issues. The researcher followed a rigorous process to review diverse literature obtained via various electronic platforms and databases. This chapter begins with an overview of the caregiver concept, provides general characteristics of caregivers and the profile of South African caregivers, and discusses caregiver prevalence. Next, the researcher offers insight into adolescents with mental health issues, as the care recipients, by explaining mental health issues and related concepts. It was also important to investigate the link between mental health issues and culture and the indicators of mental health issues. This is followed by an exploration of risk factors for adolescents in relation to developing mental health issues and related prevention strategies. Lastly, the impact on caregivers of caring for adolescents with mental health issues is discussed, with a focus on burdens, caregiver well-being, and their unmet needs. A discussion of targeted initiatives for caregivers concludes this literature chapter. 2.2 THE CAREGIVER CONTEXT Caregiving, as a phenomenon, materialised in the late 18th century (Hoffmann & Mitchell, 1998), and was considered to involve activities related to love and duty (Feinberg & Levine, 2015). However, viewing caregiving through this rosy lens conceals the sad truth of caregivers’ daily challenges (Feinberg, 2014). Caregivers are mostly invisible, ignored, and not recognised by community members and 3 https://libquotes.com/goethe/quote/lbg3c7g 31 healthcare professionals (Harris, 2018; Feinberg, 2014; Joslin, 2002). There is an increasing research focus on the context in which caregivers provide care. A high number of caregiver narratives and common themes emerged from this extensive body of work. These caregiver narratives translate into a contextual understanding of caregiver dynamics and caregiving practices in various circumstances. Caregiving is an idiosyncratic process, and each narrative helps to better understand caregivers’ experiences (Black, 2014; Talley et al., 2014; Montgomery & Kosloski, 2009; Sawatzky & Fowler-Kerry, 2003). From this exploration of caregiver research, the researcher will highlight the nature of caregiving and the complexity of caregiver experiences. Caregiving could be rewarding and fulfilling (Gelkopf & Roe, 2014; Greeff & Nolting, 2013); however, most of the time, caregivers face many challenges related to their circumstances (Isa et al., 2016; Jiloha & Kukreti, 2016; National Alliance for Caregiving & AARP, 2015). People in a caregiving role carry significant physical, emotional, or financial burdens (NYC Department of Aging, 2017; Sheets et al., 2014; Talley et al., 2014). All caregivers face caregiving challenges, which inform a collective understanding of the reality of caregiving. Furthermore, the caregiver burden could influence the well-being of care recipients, who are typically individuals with acute or chronic illnesses, the frail or elderly, newborn babies, children and adolescents, and persons with physical or mental health issues (Bingham, 2017; Stacey et al., 2016; Talley et al., 2014; Logsdon & Robinson, 2000). Caring for a person suffering from mental health issues can even be more demanding on the caregiver (Alzahrani et al., 2017; Bademli et al., 2017; Bhandari et al., 2017; Chang et al., 2016; Chadda, 2014) than caring for persons who do not have mental health issues. Research suggests that caring for children and adolescents with mental health issues can be very intensive and overwhelming (UCLA Center for Mental Health in Schools and Student Learning Support, 2018; National Alliance for Caregiving & AARP, 2015; Talley et al., 2014; Oruche et al., 2012). Caregiving may be further complicated by caregivers who are not knowledgeable about mental health issues, which cause difficulties in managing affected adolescents. If caregivers fail to recognise mental health issues, it may be 32 due to being uneducated or unskilled regarding adolescents’ development and health. Although empirical research narrates that caregivers do not recognise child and adolescent mental health issues, this phenomenon has been neglected in studies (Steding, 2016; Ambikile & Outwater, 2012; Pavuluri et al., 1996). Caregiver recognition of mental health issues may predict their willingness to seek timeous help for early detection of a possible mental health disorder, and the management thereof (Reardon et al., 2017; Steding, 2016; Thurston et al., 2016). Unfortunately, low socio-economic status environments, specific cultural characteristics, and lack of support and resources present more challenges for both the caregiver and the adolescent with mental health issues (Kelleher, 2019; Leventhal, 2018; Ae-Ngibise et al., 2015). Caregivers, as the gatekeepers of adolescent mental health, play a crucial role in rural communities where there is a lack of human and mental health resources (Denby & Bowmer, 2013; Gamm et al., 2003). Parents and close family relatives are usually seen as “caring adults” or “guardians” living with the adolescent. Consequently, all parents are, per definition, seen as informal caregivers, due to their care responsibilities towards children or dependents (Gérain & Zech, 2018). Parental awareness in detecting mental health issues is a vital determinant of adolescent mental health in public health initiatives (Vining, 2019; Abera et al., 2015). The researcher extends concerns about efforts to investigate rural caregivers’ role in caring for adolescents with mental health issues and identifying initiatives to support this critical role. Abera et al. (2015) declare that LMICs need to design public health initiatives for caregivers of adolescents with mental health issues. A review by Thrush and Hyder (2014) states that caregivers in LMICs suffer caregiving consequences, and related research is limited. It will be foolhardy to ignore the burdens that affect caregivers who care for loved ones (NYC Department of Aging, 2017; Brown & Brown, 2014), and researchers should strive to identify active support initiatives (León-Del-Barco et al., 2019; National Alliance for Caregiving & AARP, 2015). Intensifying the development of appropriate initiatives to support caregivers may mitigate a variety of challenges (León-Del-Barco et al., 2019; Magai et al., 2018; Epstein et al., 2015). Regrettably, caregivers feel unsupported (Choate, 2015) and are seldom interested 33 in information (Ford et al., 2016). The researcher will discuss the concept of caregivers next. 2.3 THE CONCEPT OF CAREGIVER Some literature differentiates between formal and informal caregivers. Formal caregivers are paid to deliver professional care at home or in facilities, while informal caregivers deliver unpaid care, usually at home (Family Caregiver Alliance, 2016; Stacey et al., 2016; Joubert, 2005). Unpaid caregivers exist in all cultures, worldwide, and some are expected to provide care as a moral duty (Stavrou et al., 2017), or on the grounds of their religious beliefs (Verbakel, 2018). Most caregivers voluntarily dedicate and commit themselves to care for others over the long term without compensation (Greenwood et al., 2019; Van Pletzen & MacGregor, 2013). Informal caregivers, including parents (mostly mothers), family members, friends, other relatives, or neighbours, are responsible for managing the daily activities or providing any additional assistance needed by the care recipient (Verbakel, 2018; Roth et al., 2015; Joubert, 2005). Sometimes, researchers describe caregivers as non-professional (Dyer et al., 2012) or non-specialist caregivers (Healy et al., 2018). Defining a caregiver can, thus, be problematic, because of diverse caregiver characteristics. Caregivers can be of any gender, age, or race, could care for various types of care recipients, and have different responsibilities (Stacey et al., 2016; Talley et al., 2014). This wide array of caregiver characteristics should be kept in mind to avoid stereotyping this population. 2.3.1 Characterising caregivers in general Understanding the underlying impact of caregiver characteristics, including gender, age, culture, education background, and relationship with care recipients, could be insightful for a study of caregivers (Hitchner, 2018; Scharlach et al., 2001). Caregiver characteristics can give a comprehensive account of what the caregiver context entails and add insight to the typology. The researcher underscores all meanings of caregiver characteristics and wishes to clarify the concept of caregivers in the current research to obtain a better understanding of the concept. 34 Women are more likely to assume the role of caregiver than men. A survey of all types of unpaid caregivers in New York City found that the typical caregiver was female, aged on average 50 years (NYC Department of Aging, 2017), with some education, and unemployed (Thrush & Hyder, 2014; Talley et al., 2014). Society usually expects a mother, grandmother, or other female relative to take up the central caregiver role (Penning & Wu, 2016; Thrush & Hyder, 2014; Logsdon & Robinson, 2000). Caregivers are not only parents, grandparents, aunts, or family relatives; and all caregivers should be acknowledged for their know-how, and for serving as the primary caregiver of adolescents with mental health issues (Schor, 2003). Most of these individuals are usually the primary caregivers of children and adolescents (Bademli et al., 2017; NYC Department of Aging, 2017; McIntyre, 2016; Penning & Wu, 2016; Talley et al., 2014). As nurturers, they traditionally provide informal care in the home setting every day (Moore, 2013; Joubert, 2005; Kenkel, 2003). Furthermore, caregivers supply more than the routine care required of a caregiver – they also have to deliver therapeutic care to children under the age of 18 who possibly have mental health (including behavioural or emotional) issues (Curtin et al., 2017; Barrett et al., 2010; National Alliance for Caregiving & AARP, 2009); in addition, they are sometimes also responsible for managing the whole household. This pragmatic description embraces the significant role that caregivers of adolescents with mental health issues play. They need to care for each person in the house, and cope with different tasks while maintaining the adolescents’ mental health during the latter’s transition from childhood to puberty, while also caring for themselves (Talley et al., 2014; Oruche et al., 2012; Dogra et al., 2002). The concept of caregiver is not separate from the role of parent or relative but is sometimes culturally restricted to mothers, or women in general. However, being a woman and a caregiver contributes to role conflict and role overload (Bastawrous & Armstrong, 2013). Older caregivers have to juggle caring for young adults, children, and even grandparents who live in the same household (Larkin et al., 2019). They contribute significantly to the formal healthcare sector in communities, at the cost of an increased caregiver burden (Greenwood et al., 2019; Carmichael & Ercolani, 2014). Older caregivers are becoming more common due to 35 an aging population (Larkin et al., 2019; Triantafillou et al., 2010). South African caregivers share specific characteristics. 2.3.2 Profile of South African caregivers Like women of most nations, South African women are traditionally the primary caregivers of children. They are responsible for childcare and housekeeping too, thus, in specific communities, the family home serves as the caring environment, and family members serve as potential caregivers. South African family composition varies, due to extended family care situations, including multi-generational households, as found in most Black communities (Martin & Zulaika, 2016; Sooryamoorthy & Makhoba, 2016). As a result of these traditional arrangements, children and adolescents experience a series of different adult caregivers over their lifetimes (Hall & Sambu, 2014). In South Africa, many children do not live with their birth parents or live with only one of their birth parents, usually the mother (Mkhwanazi et al., 2018; Bunning et al., 2017; Rabe, 2017). Woman-headed households are common in South Africa; in these households, mothers, grandmothers or aunts provide care – few men fill the role of caregiver. These living arrangements reflect the stark reality of the absence of father figures in the lives of children and adolescents (Hall & Sambu, 2014). Adolescents who were not raised by their fathers, or at least by another male figure, could indicate that challenges may arise from caregiver-adolescent relationships. A large percentage of South African children under the age of 18 years live with their grandparents (Martin & Zulaika, 2016), or with relatives in rural settings, sometimes separate from their siblings, while biological parents work in other towns. Caregivers in these circumstances include grandparents, aunts, or even uncles (Hall & Posel, 2019; Hall & Sambu, 2014). Grandparents who assume parental roles face numerous challenges because older persons are generally seen as care recipients, not caregivers (Joubert, 2005). In some cultures, parents or grandparents may feel obliged (Sooryamoorthy & Makhoba, 2016) to care for someone, and they do not see themselves as caregivers (NYC Department of Aging, 2017; Martin & Zulaika, 2016). Verbakel (2018) linked this phenomenon to culture. In some contexts, informal 36 caregiving is part of usual family life, and caring does not make someone a caregiver. Historically, this care-relationship refers to informal care or kinship care, which involves a close relative being responsible for childcare. “Nonetheless, kinship care is the least protected and least supported form of alternative care for children” (Assim, 2013). The various situations described above indicate the fragmentation of caregiver practices, which makes it difficult to determine the prevalence of caregivers. Questions remain about what caregiver prevalence actually is. 2.3.3 The prevalence of caregivers concerning children and adolescents In the United States in 2014, approximately 43.5 million adults served as unpaid caregivers of adults or children (NYC Department of Aging, 2017). These caregivers were mainly female (66%), and were aged, on average, 48 years. About one third cared for more than two people (34%); a seventh of the caregivers looked after their own children (14%). Furthermore, one-third of caregivers (37%) had children or grandchildren under the age of 18. African-Americans (65%) and Hispanics (63%) were more likely to be primary caregivers than Caucasians (53%) or Asian- Americans (48%) (National Alliance for Caregiving & AARP, 2009). In the European population, the estimated number of informal caregivers ranges from 10% to 25% (Zigante, 2018). Explaining South African caregiving statistics is more difficult, primarily due to diverse living arrangements and traditions, and extended family settings. The term extended family is a well-known concept in Black populations. An extended family consists of parents (one parent or both), grandparents, aunts, uncles, and even cousins, living in the same household or in close proximity. In South Africa, 62% of children live in such multigenerational households. Extended families occur predominantly in rural communities (Hall & Mokomane, 2018; Mkhwanazi et al., 2018; Amos, 2013) and, thus, it is difficult to find accurate data on the prevalence of caregivers in South African households, where caregiver prevalence statistics are not collated. In poor households in South Africa, almost 92% of primary caregivers of children are mothers, grandmothers, and aunts (Rabe, 2017; Joubert, 2005). Furthermore, the 37 2016 Community Survey (Stats SA, 2016) reports that 41% of homes were woman- headed, while 65% of children live in households where grandparent(s), or even great-grandparent(s) were in charge. Some 2.7 million South African children have been reported to live with their grandparents only (Mkhwanazi et al., 2018; Amos, 2013; Amoateng et al., 2007); 39% of these grandparents were younger than 60 years (Hall & Mokomane, 2018). Generally, all household residents share childcare responsibilities. The researcher understands the context of sharing responsibilities by household members, though it is not clear whether these living arrangements lead to conflict or confusion among the residents regarding caregiving practices. This statement emphasises the importance of understanding the vital roles and responsibilities of caregivers who care for adolescents. Greater understanding of the care recipient in this dyadic care relationship would help to make meaning of caregiver burdens. 2.4 CARE RECIPIENTS: ADOLESCENTS WITH MENTAL HEALTH ISSUES Conceptual meanings related to the care recipient, namely, the adolescent with mental health issues, will be explored further. The concept of adolescence is not interpreted uniformly – there are numerous definitions, which emphasise a variety of characteristics, from age differentiations to developmental changes, and even the period of transition. Terminology, such as child, youth, young adult, or young person, is all related to the term adolescent, according to the WHO (2017). The WHO defines adolescence as the period between the ages of 10 and 19 years (WHO, 2012a), and refers to the period of adolescence as a time of human growth and development, during which critical changes take place (WHO, 2016a). Adolescence is characterised by developmental changes that occur between childhood to adulthood (Coovadia et al., 2016; Casey et al., 2010; Dogra et al., 2002). Much has been written, in both the media and literature, about adolescent transitions. Entering adolescence implies cognitive, physical, social, emotional, and behavioural changes (Coovadia et al., 2016; APA, 2002). Adolescence also marks the shift from being dependent, to becoming independent (Casey et al., 2010). It is a unique period of human development. However, rapid transitions might disturb 38 adolescents’ daily functioning and have implications for their mental health (Toska et al., 2019; Dogra et al., 2002). Poor management of changes during adolescence may hinder healthy development and mental well-being and has the potential to cause mental health issues (Child Mind Institute, 2016). Mental health issues frequently appear during adolescence (Patel et al., 2018; Patton et al., 2016). 2.4.1 Mental health issues in adolescence and related concepts Mental health exists along a severity continuum, which includes mental well-being, behavioural and mental health issues, and mental health disorders. This continuum may range from mental well-being on the one end, to a mental health disorder on the other end; in between are normal/abnormal behaviour and mental health issues (McAdam et al., 2018; Dogra et al., 2002). The nature of the middle spectrum of the continuum is challenging to define and covers a broad range of definitions. Interchangeable explanations of behavioural and mental health issues during adolescence appear in literature and contribute to confusion about this concept (Borba et al., 2018). A synonym for mental health disorder, or simply, mental disorder that is used in research is mental illness (Radden, 2019; McAdam et al., 2018; Robila, 2016). However, Skylstad et al. (2019), takes another approach to this term: “Mental illness is used as a term intended to be broader than ‘disorder,’ and it adheres more closely to the popular understanding of mental processes and illness”. Another version of mental health terminology is, for example, to use the term psychiatric disorder. Stein et al. (2010) refer to mental/psychiatric disorder in their paper and claim it is difficult to operationalise a clear definition. These authors also propose a definition based on the Diagnostic and Statistical Manual of Mental Disorders (DSM 5 manual). According to the DSM 5 (American Psychiatric Association, 2013), mental disorders display as disturbances in cognitive abilities, emotion regulation, or behaviour that reflects dysfunctional biopsychological processes. Radden (2019) states that behavioural conditions are included in the term mental disorder. Cognitive, behavioural and emotional problems are indicative of mental health issues, according to Swaminathan (2016) and Veldman et al. (2015). Dogra et al. 39 (2002), Swaminathan (2016), Adhikari et al. (2015) and Hoskins (2014) list (externalising) behavioural problems in adolescents as lying, stealing, aggression, school refusal, inattentiveness, insubordination, truancy and substance use. Correspondingly, they all explain (internalising) emotional problems as depressed mood, anxiety, worry, fear, thought disturbances, lack of self-esteem, unhappiness, and anger. A similar understanding of these concepts is that increased levels of externalising problems (aggression and hyperactivity), internalising problems (anxiety and depressed mood), and dysregulation (sleeping and eating problems) are associated with mental health issues (Ogundele, 2018; Godoy et al., 2014). Internalising and externalising behaviour indicates problem behaviour that leads to mental health issues (Robila, 2016; Hoskins, 2014), which, if not managed timeously, could lead to a chronic mental health diagnosis. Thus, mental health issues refer to all problematic behaviour observed, but not formally diagnosed by a professional. Another perspective in literature alludes to the term risky behaviour, which can cause problems for adolescents, and lead to mental health issues. Some examples of common risky behaviours are substance abuse (alcohol and drugs), gang activities, bullying, and teenage pregnancy (Mfidi, 2017; Pandžić et al., 2017). Mfidi alleged that mental health issues such as mood disturbances originate from risky behaviours. Theft and gang-related activities are classified as disruptive behaviour. All these concepts that relate to behavioural problems are used synonymously with mental health issues (Mfidi, 2017). Petrovic and Scholl (2018) claim that a single definition of disruptive behaviour is needed, due to a multitude of classifications, including voluminous lists of synonyms in literature. Mental health issues and related concepts are interpreted in different ways by various researchers – they are complex and, thus, complicated to describe. Furthermore, it is essential to ask whether uneducated and unskilled caregivers will comprehend the concept of mental health issues when there is minimal consensus in the literature. Caregivers are the people who must decide whether adolescents need help (Valverde et al., 2012), and they base their decision on their concern about the adolescents’ mental health and behaviour (Veldman et al., 2015). Similarly, the WHO (2017) reports that many caregivers feel inadequate in the caregiving role, and it is 40 likely caregivers find it difficult to decide whether an adolescent presents normal adolescent behaviour, or whether their behaviour is indicative of a mental health issue (Campelo et al., 2014). 2.4.2 Mental health issues and the caregivers of adolescents Fisher et al. (2011) believe that caregivers are well-positioned to notice changes in adolescents’ behaviour because of close living arrangements and family relations. Leon-del-Barco et al. (2019) point out that the family unit can be either a risk factor or, in some cases, serve as protection in monitoring mental health issues in adolescents. In turn, Clack (2016) argues that caregivers’ perceptions of whether mental health issues are problematic are not critical predictors of mental health service use. The truth is that a few caregivers are concerned about mental health issues in their children, even though mental health is a common problem in primary care (Sayal et al., 2010). Caregivers find it difficult to recognise mental health issues in children and ascertaining the severity of the issue. They identified this as a barrier to help- seeking; another barrier was not being listened to by health professionals (Reardon et al., 2017). Godoy et al. (2014) claim that acknowledging and accepting caregivers’ intuition regarding mental health issues and help-seeking could reduce unmet mental health needs of children. Therefore, understanding that caregivers play a vital role in adolescents’ mental healthcare, and acknowledging caregivers as key supporters of adolescents, are critical (Chadda, 2014; Ambikile & Outwater, 2012). Researchers insist that caregivers must be aware of and recognise mental health issues in adolescents if they are to assist adolescents through timely help-seeking. Furthermore, increasing caregivers’ knowledge and skills regarding mental health issues may be positively related to their willingness to seek help. Healthcare professionals should consider caregivers’ beliefs about and attitudes towards mental health issues, in order to overcome barriers and increase their efficacy in seeking advice (Steding, 2016; Thurston et al., 2016; Pavuluri et al., 1996). Consequently, caregivers’ perceptions of mental health issues influence their management of and help-seeking for these adolescents (Kizaur, 2016; Adhikari et al., 2015; Dogra et al., 41 2002). A better understanding of caregivers’ influence on adolescent mental health outcomes (Godoy et al., 2014; Hoskins, 2014; Kieling et al., 2011) may create pathways to support them (Finan et al., 2018; Gavazzi, 2011) and improve their help- seeking, which could, in turn, prevent long-term adverse consequences (Skylstad et al., 2019; Abera et al., 2015; Hoskins, 2014). Caregivers’ multiple role responsibilities and general caregiving of adolescents may be challenging and time-consuming for the caregiver to manage. Doing so can lead to unmet needs in caregivers and their care recipients (Oruche et al., 2017; Chadda, 2014; Ambikile & Outwater, 2012). In summary, caregivers remain vital for adolescents’ healthcare (Patton et al., 2016; Gavazzi, 2011; Evans et al., 2005), and they are in a unique position to judge adolescent behaviour (Hoskins, 2014; Talley et al., 2014; Manders et al., 2009). Caregivers act as gatekeepers for adolescents (Skylstad et al., 2019; Reardon et al., 2017), and it is crucial to understand their impact on adolescents with mental health issues (Hoskins, 2014). Caring for an adolescent with mental health issues can cause strain, and caregivers can experience several challenges that impact their well-being (National Alliance for Caregiving & AARP, 2009). Distinguishing normal adolescent development from mental health issues is, thus, problematic (Paruk & Karim, 2016), especially for the caregiver in the social environment that involves family, school, and community influences (APA, 2002) (see Section 2.4.4.1). Societal values and beliefs influence views on mental health (Videbeck, 2020), and cultural differences regarding the acceptability of types of behaviour or mental health issues should be considered during information sessions (Halter, 2018). 2.4.3 Mental health issues and culture People must be mindful of the complexities of mental health issues in relation to culture. Each culture conceptualises a unique perception of mental health issues, which complicates the recognition of abnormal behaviour (Monteiro, 2015; Costello et al., 2006). Normative behaviour in one culture can be problematic in another (Monteiro, 2015; Stiffler & Dever, 2015), while acceptable behaviour in one culture 42 does not mean it is acceptable in another (Videbeck, 2020). Cultural beliefs about mental well-being and mental health issues, and their causes, can differ among populations (Halter, 2018; Naik & Kaneda, 2015; Patton et al., 2010; Lund C., 2008; Remschmidt & Belfer, 2005). Videbeck (2020) and Halter (2018) explain that cultural factors influence people’s beliefs about the causes of mental health issues and, in turn, affect individuals’ understanding of factors responsible for the development of mental health issues. Knowledge about cultural patterns may help us to comprehend caregivers’ misconceptions about mental health issues and their related indicators. A better understanding of how cultural context guides the caregiver in identifying mental health issues and help-seeking is required (Curtin et al., 2017; Abdulmalik & Thornicroft, 2016). This understanding could assist researchers to address the gap in caregivers' knowledge by educating them about the multiple risk factors implicated in mental health issues. Early identification of issues can prevent adverse adolescent mental health outcomes (Monteiro, 2015; Richardson & Wyatt, 2010), and support caregivers with information on mental health indicators. 2.4.4 Indicators of mental health issues Various risk factors predispose people and contribute to the onset of mental health disorders, while protective factors lower the risk of or prevent the probability of someone developing a mental health disorder. Risk and protective factors include interrelated fields, such as social environment, personality, and behaviour (Jessor, 2016; NBHC, 2016; Nightingale & Fischhoff, 2001). Loeber et al. (2009) state that adolescents are even more prone to mental health issues if they are exposed to prevalent risk factors and minor protective factors. Wille et al. (2008) and Videbeck (2020) agree that adolescents who are subjected to higher risk factors might develop mental health issues. Ogundele (2018) lists common factors that increase the risk of developing mental health issues, namely, poor socio-economic environment, poverty, gender, age, hostile family life, and contact with household tobacco use. Specific risk factors that have been widely documented for adolescents in South Africa are being exposed to 43 violence, poverty, abuse, loss, bullying, family disruption, upsetting life events and families affected by HIV and AIDS (Van Niekerk & Mathews, 2019; Flisher et al., 2012; Patel et al., 2007) Mental health issues, if unrecognised, can render the adolescent vulnerable, and can contribute to the development of a mental health disorder in any context (Child Mind Institute, 2016; WHO, 2014; Blum et al., 2012; Fisher et al., 2011). Understanding risk or protective factors involved in adolescents’ mental health can provide knowledge, so that caregiver practices and the development of prevention strategies can be targeted. Exposing adolescents to risk factors might increase the likelihood of them developing mental health disorders, and could influence the duration and severity of disorders (McAdam et al., 2018). A basic understanding of risk factors associated with mental health issues may help caregivers to act as change agents and promoters for the prevention of mental health issues in their immediate social environment. 2.4.4.1 Risk factors in the social environment According to Fisher et al. (2011), the family, education facilities, and the broader community forms the social environment that influences adolescent mental health. Evans et al. (2015) refer to individual, family, and community influences as risk domains. Loeber et al. (2009) and Scott et al. (2015) agree about similar domains and add peer groups as another influential factor. Another risk factor, suggested by Masare et al. (2017), is the school setting. Home and school environments can precipitate behavioural problems, which can lead to mental health issues (Ogundele, 2018; Olives et al., 2013). Consequently, the relations and interactions between the adolescents, their families, and the wider community may affect adolescents. These impacts can either promote good mental health or indicate a high risk for poor mental health in adolescents. Transitions during adolescence may cause internal or external stresses for adolescents and their families (Anniko et al., 2019; Krapić et al., 2015; Dogra et al., 2002). These stresses could be multifactorial (McAdam et al., 2018; Pinto et al., 2014; Dwivedi & Harper, 2004), could create vulnerabilities in adolescents (Krapić et al., 2015; Nightingale & Fischhoff, 2001), and may contribute to poor mental health 44 (Swaminathan, 2016). Poor mental health in adolescents which is provoked by risk factors signifies the possibility of developing mental health issues (Masare et al., 2017; Patel et al., 2007). Examples of individual, family, school, and community indicators are the following.  Individual factors include, for example, sleeping problems, inactivity, substance abuse, stress due to brain changes in adolescence (Michael & Jameson, 2017; Child Mind Institute, 2016; NBHC, 2016; Durlak, 1998), low self-esteem, and internalising and externalising behaviours (Pinto et al., 2014). Individual, multifactorial risk determinants responsible for mental health issues may vary between regions and nations (Vijayakumar et al., 2015).  Family factors contributing to mental health issues are lack of family support, absence of caregivers from adolescents’ lives and caregivers not being involved in adolescents’ lives (Michael & Jameson, 2017; NBHC, 2016; Durlak, 1998), divorced or separated parents, and physical and sexual abuse (Pinto et al., 2014). Wille et al. (2008) and Georgiou and Symeou (2018) identified family conflict and parental strain as potent risk predictors for developing mental health issues. Less favourable circumstances relating to, for instance, parental support and resources, increase the likelihood of adolescents being vulnerable and developing mental health issues.  School factors include academic challenges, bullying, rejection by peers, and lacking a sense of belonging (Michael & Jameson, 2017; NBHC, 2016; Vaz et al., 2015; Nightingale & Fischhoff, 2001). Furthermore, Pinto et al. (2014) identified “discrimination and racism”, or being from a “low socioeconomic level” in a school environment as leading to mental health issues.  Lastly, community factors are represented by exposure to violence, transport challenges, limited recreational activities or facilities, stigma related to mental issues, and inadequate mental health and support services (Michael & Jameson, 2017; NBHC, 2016). Psychosocial and religious aspects linked to the community’s traditions and practices may also contribute to the development of mental health issues (Pinto et al., 2014). 45 These indicators illuminate global and local trends among adolescents but might be even more prominent in rural areas that lack knowledge, resources, and support concerning mental health issues. 2.4.4.2 Strategies to prevent risk factors Accumulation of risk factors should be prevented through effective strategies. Kieling et al. (2011) and Magai et al. (2018) assert that exposure to risk factors can increase the occurrence of mental health issues, and early identification may prevent chronic mental disorders. Kieling’s review established that strategies that decrease risk factors and strengthen protective factors might prevent the onset of mental health disorders. Unrecognised and untreated mental health issues may culminate in adverse conditions and the development of chronic mental health disorders (WHO, 2014). Strategies that reinforce protective factors have the potential to improve adolescents’ mental health (NBHC, 2016; Scott et al., 2015; Wille et al., 2008). Generally speaking, there should be a focus on reducing risk factors and increasing protective factors (McAdam et al., 2018; Durlak, 1998). This interpretation differs from that of Rutter and Taylor (2008), who argue that strategies should focus on protective factors because it is more difficult to adapt or change risk factors. On the other hand, Patel et al. (2008a) believe that the principal focus on prevention will decrease the impact of risk factors. These multifactorial risk exposures have causal attributes to adolescents’ mental health outcomes; thus, the importance of attempting to prevent it. In achieving this goal, it is necessary to involve caregivers as individuals responsible for adolescents, in preventive strategies (Robila, 2016; Kuhn & Laird, 2014; Hoagwood et al., 2010). Caregivers are crucial partners in the prevention and promotion of adolescents’ mental health (Patel et al., 2016; Robila, 2016). Supporting caregivers through targeted initiatives has the potential to reduce causal risk factors contributing to mental health issues (Scott et al., 2015). Empowering the caregivers and community through dissemination of relevant information related to adolescents’ mental health may minimise potentially chronic conditions (Finan et al., 2018; Leventhal, 2018; Petersen et al., 2015). Wille et al. (2008) found that adequate resources at individual, 46 family, and community levels related to a diminished incidence of mental health issues. Consequently, caregivers play a critical role in adolescent mental health outcomes and well-being (Gavazzi, 2011; APA, 2002). The abovementioned illustrates the reality of caregivers’ situations within family settings in South Africa and raises awareness of the caregivers’ context when caring for adolescents with mental health issues. Prioritising caregiver support may lead the way to reduce the burden of poor mental health in adolescents. 2.5 THE PREVALENCE OF ADOLESCENT MENTAL HEALTH ISSUES There were 1.2 billion youth aged 15-24 years globally in 2019, of which 211 million lived in sub-Saharan Africa (United Nations, 2019). The number of the youth population has stabilised in Latin America, the Caribbean, Europe, North America and Oceania. In contrast, the youth population in Asia and Africa has undergone significant changes in numbers (United Nations Department of Economic and Social Affairs Population Division, 2015). The vast majority of adolescents aged 10-19 years live in LMICs and comprise 16.4% of the world’s population (WHO, 2014). Sub-Saharan Africa’s youth population will peak by 2050 and is predicted to have increased by 89% by this time (United Nations, 2019). This expected increase in the adolescent population in LMICs implies a corresponding increase in the prevalence of mental health disorders because nearly half of all lifelong mental health disorders start by age 14 (Kassebaum et al., 2017; Atilola, 2015; Scott et al., 2015). Worldwide, prevalence rates of mental health disorders are about 10%-20% in children and adolescents (Malhotra & Patra, 2014; Patel et al., 2008; Patel et al., 2007). Mental health prevalence statistics for adolescents are very scarce, and Erskine et al. (2017) reported limited availability of data on the prevalence among adolescent. These authors found that 124 of 187 countries had no data on any mental health disorder of children between 5 and 17 years. It is cause for concern that sub-Saharan Africa reports only 2% of children suffering from mental health disorders, indicating limited statistics relating to mental health disorders in adolescents (Erskine et al., 2017). Adolescents under the age of 18 47 years make up approximately 40% of the South African population, and this high proportion is likely to contribute to a higher mental health issue prevalence (Scott et al., 2015). Not only are mental health issues of children and adolescents increasing, but there are no clear policy guidelines for services to ensure the mental health of children and adolescents in South Africa. All nine provinces in South Africa provide general primary healthcare services and focus on HIV and AIDS, tuberculosis, and maternal and child health, however, limited provision is made to promote mental health (Mokitimi et al., 2018). Atilola (2015) refers to the neglect of development policy concerning the mental health of children and adolescents in LMICs. Mental health promotion should be prioritised in public health, in light of the burden caused by mental health issues (Monteiro, 2015; WHO, 2014). In light of these shortcomings, Skylstad et al. (2019) draw our attention to ineffective mental health service provision and fragmented mental healthcare for children and adolescents. They highlight the necessity of informing stakeholders (caregivers and the community) that they should be cognisant of adolescents’ mental health because failure to detect it early on could have severe consequences. We should understand the extent of the mental health burden on adolescents to comprehend the impact on caregivers. 2.6 IMPACT ON CAREGIVERS’ CARING FOR ADOLESCENTS WITH MENTAL HEALTH ISSUES Caregivers carry a double burden of disease, that is, that of the adolescent in their care, as well as their own emotional burden (Stacey et al., 2016). Caregivers struggle to cope with adolescents' mental health issues and experience a great deal of stress. Caregivers’ supposed “labour of love” causes physical, emotional, social, and financial turmoil. Caregiver burdens are well documented (NYC Department of Aging, 2017; Talley et al., 2014; Marimbe-Dube, 2013; Ambikile & Outwater, 2012; Mendenhall & Mount, 2011; Pramita & Jena, 2011; Mavundla et al., 2009; Schor, 2003), and is a theme that has been explored often over the past few decades. However, a satisfying definition of caregiver burden has still not been conceptualised. The negative impact 48 of the caregiving role of family members is conveniently used by researchers to explain the concept of caregiver burden (Ofosu, 2017; Bastawrous, 2013). Mendenhall and Mount (2011) describe the caregiver burden as a challenging situation that involves significant responsibilities and role unfamiliarity, and which increases stress levels. 2.6.1 Caregiver burden The caregiver burden can be divided into two components, namely, objective and subjective burdens. Objective burdens (time, financial strain, and daily routine disruptions) involve observable effects that are inconvenient and difficult to manage. In contrast, subjective burden refers to the caregiver’s emotional state (negative feelings or perceptions) associated with caregiving (Ofosu, 2017; Flyckt et al., 2015; Talley et al., 2014). Objective burdens are sometimes easier for caregivers to manage, because of their tangibility, whereas a subjective perception can create distress that is more emotional and may be challenging to grasp (Gérain & Zech, 2019). Living with children and adolescents with mental health issues has been found to be emotionally, socially, physically, and financially burdensome to caregivers (Ae- Ngibise et al., 2015; Ambikile & Outwater, 2012), and caregivers suffer from high levels of burden (Talley et al., 2014; Ambikile & Outwater, 2012; Dada et al., 2011). Ambikile and Outwater (2012). Mendenhall and Mount (2011) claim that caring for children and adolescents with mental health issues cause additional burdens, which increase caregivers’ stress levels further. Caregivers experience significant levels of burdens, including financial and emotional hardships, and even stigma related to mental health issues (Abdulmalik & Thornicroft, 2016; Oruche et al., 2012; Dada et al., 2011).  Emotional burden includes feelings of sadness, concern, or “hurting inside” due to caregiving responsibilities (Ambikile & Outwater, 2012; Oruche et al., 2012; Knock et al., 2011). Other emotional strain endured by caregivers is anxiety and stress (Mwei, 2015; Talley et al., 2014; Mendenhall & Mount, 2011; Wynaden et al., 2006). Participants in a Kenyan study by Molebatsi et 49 al. (2017) mentioned that constant worry about care recipients’ condition caused emotional pain. Caregivers in Zimbabwe used the concept of “thinking too much” to describe their emotional burden (Marimbe et al., 2016). Caregivers in the study by Knock et al. (2011) commonly mentioned demands on everyday activities, as well as emotional burdens. Female caregivers experienced higher distress and more severe burdens than men did (Molebatsi et al., 2017; Viana et al., 2013; Ambikile & Outwater, 2012).  Furthermore, social burdens are represented by disruption of family relationships and social life by care responsibilities, which constrain personal time or cause shame about care recipients’ mental health issues (Mwei, 2015; Oruche et al., 2012; Mendenhall & Mount, 2011; Pramita & Jena, 2011). The possibility of rejection by the community due to the stigma about mental health issues (Marimbe et al., 2016; Oruche et al., 2012) could lead to social isolation. Caregivers also receive inadequate social support, probably triggered by poor public awareness regarding mental health issues (Ambikile & Outwater, 2012).  Physical burden is brought about by fatigue, stress, and sleep disturbances (Marimbe et al., 2016; Oruche et al., 2012; Mendenhall & Mount, 2011; Mavundla et al., 2009). Some research participants in Zimbabwe complained of physical symptoms such as back pain and high blood pressure (Marimbe et al., 2016). However, in a study in South Africa, researchers found that Black African and Coloured4 caregivers reported less physical burden than other caregivers (Yakubu & Schutte, 2018).  Extra expenditure related to care recipients' conditions added to the economic burden for caregivers. Some financial challenges reported in the literature relate to caregivers from a poor socio-economic setting who struggle with transport expenses, loss of income, employment challenges, high childcare expenses, and daily living expenses (Molebatsi et al., 2017; Viana et al., 2013; Ambikile & Outwater, 2012; Pramita & Jena, 2011). Limited financial 4 In Southern Africa, the term Coloured has a specialised meaning in that it denotes a person of mixed racial ancestry. 50 resources contribute to the burden of already poor caregivers (Mwei, 2015; Talley et al., 2014; Knock et al., 2011). Additionally, uncontrollable financial circumstances were more challenging to caregivers than subjective burdens were (Ofosu, 2017). On the other hand, primarily Black and Coloured caregivers in a low-income setting indicated minimal financial burden, according to Yakubu and Schutte (2018). Other burdens mentioned are caregivers’ incapacity to care for themselves and sustaining their marital relationships (Oruche et al., 2012). Caregivers are also burdened by other difficulties, such as adolescents’ negative behaviour and own parenting practices. Dividing their attention between the care recipient and other children in the same household cause caregivers distress. Even more difficult for the caregiver to manage is the developmental issues of the adolescent (Knock et al., 2011). Bastawrous (2013) highlights that caregiver burden stems from role conflict and role strain, especially among female caregivers. Caregivers caring for their own children (43%), versus a relative’s children (29%), experienced higher stress levels (National Alliance for Caregiving & AARP, 2009). High unemployment, low literacy, and older women often represent the typical caregiver traits in a multi-generational South African context. This typology can predict the contextual influences of the current research study. Therefore, the importance of understanding caregiver burden is vital for supporting them and identifying the needs related to these worrying challenges. Recognising and addressing caregivers’ specific needs may supply appropriate resources through effective initiatives that may strengthen caregiving behaviour (Molebatsi et al., 2017; Atilola, 2015; Meltzer et al., 2011). There is a connection between caregiver burden and well-being, and it affects the caregiving relationship either positively or negatively. 2.6.2 Caregiver well-being The well-being of caregivers caring for adolescents with mental health issues is critical. The caregivers are a fundamental source of support for adolescents and have the potential to regulate adolescent behaviour more positively. Additionally, 51 caregivers have a crucial role to play in laying the foundations for optimal mental health for adolescents and, hence, it is essential to attend to their well-being (WHO et al., 2018; WHO, 2017). Brown and Brown (2014) report that research studies tend to focus more on the negative aspects of caregiving. Caregivers do not always experience caregiving negatively, and they found a positive relation between caregiving and well-being. Caregivers were satisfied with their caregiver role and demonstrated positive feelings of compassion and closeness towards care recipients. Well-being is also prioritised under the Sustainable Developmental Goals adopted by the United Nations in 2015. Goal No. 3 focuses on healthy lives and promoting well- being for people of all ages, including their mental health (United Nations Department of Economic and Social Affairs Population Division, 2015). Caregiver well-being is also essential in the caregiver-adolescent dyad relationship, and caregivers need a caring platform to ventilate their frustrations (Stavrou et al., 2017). It can be said that providing caregivers with support opportunities may boost their well-being (Balestrery et al., 2015). Support platforms may improve their caregiving abilities and coping skills, thereby producing a boost to their well-being (Aschbrenner et al., 2010). Nonetheless, understanding caregivers' well-being is inherently linked to the type of support they need to achieve that state of well-being. 2.7 CAREGIVERS’ UNMET NEEDS AND SUPPORT CHALLENGES Enhancement of caregiver well-being, as well as that of their children and families, can transpire through addressing several unmet support needs and challenges (Oruche et al., 2012). A wide range of caregiver support needs have been documented in the literature, including informational needs (Ford et al., 2016; Pelentsov et al., 2015; Talley et al., 2014), training needs (Bingham, 2017; Kadungure, 2017; Talley et al., 2014), need for professional assistance (Chadda, 2014), need for social support (Mikolajczak et al., 2019; Reardon et al., 2017; Pelentsov et al., 2015; Talley et al., 2014), need for emotional support (Steding, 2016; Talley et al., 2014; Logsdon & Robinson, 2000), spiritual needs (Pelentsov et al., 2015; Talley et al., 2014) and financial needs (Huus et al., 2017; Sukeri et al., 2017; Talley et al., 2014). Caregivers' needs must be adequately addressed to 52 ensure successful caregiving (Whitlatch & Orsulic-Jeras, 2018; Stavrou et al., 2017; Deeken et al., 2003). Sukeri et al. (2017) agree with the abovementioned analysis and add the caregivers’ need for community services. To support and maintain their caregiving, it is essential to thoroughly evaluate the needs, strengths, and choices of caregivers (Feinberg & Houser, 2012). 2.7.1 Information needs Adolescents’ development and the caregivers’ role in adolescents’ health promotion are multifaceted. Caregivers are, overall, interested in receiving information concerning health issues, primarily information related to adolescents. Caregivers need relevant information that can assist them by creating awareness and increasing their knowledge and recognition of mental health issues in adolescents (Gronholm et al., 2015; Mendenhall & Frauenholtz, 2013; National Alliance for Caregiving & AARP, 2009; Logsdon & Robinson, 2000). Remarkably, Ford et al. (2016) found that Black caregivers (a minority population) were more interested in acquiring health information (including information on mental health) than White caregivers. This study investigated parents' and adolescents' interest in receiving health communication information in primary care settings, on 18 topics, including mental health. Malaysian caregivers from a lower income group ultimately reported a need for information about children (<18 years) with different types of disabilities in a study by Suriati et al. (2011). Information needs identified were, among others, to know about managing the child’s behaviour, about the condition itself, and services available. Information needs differ among caregivers, depending on their characteristics and circumstances. Knock et al. (2011) report on difficulties faced by caregivers of adolescents on the schizophrenia spectrum. They found insufficient and poor quality information about the adolescents’ condition and treatment. Providing necessary information regarding mental health issues may raise rural caregivers' awareness and assist them with decision-making (Fenell & Hovestadt, 2005). Beyond information, training regarding adolescence and mental health issues can also supply valuable support for their caregiving practices. 53 2.7.2 Training needs Caregivers need training and skills development in active adolescent support (Cavaleri et al., 2011). Untrained caregivers could mistake mental health issues as possible developmental issues related to adolescence, and neglect getting access to health services (Thurston et al., 2016). Caregiver training can alleviate adverse outcomes for both themselves and adolescents (Whitlatch & Orsulic-Jeras, 2018; Jalling, 2017), thereby inherently promoting mental health. In her study, Steding (2016) reasons that caregivers have not received adequate training to recognise problematic behaviour that creates barriers to help-seeking from healthcare providers or services. Proficient caregiving could be achieved through better guidance and training of caregivers (Bingham, 2017; Talley et al., 2014; Logsdon & Robinson, 2000). Talley et al. (2014) highlight caregivers’ need for training and skills development to manage mental health issues in adolescents. Skill development gives caregivers confidence and prepares them to deliver caregiving activities (Henning-Smith & Lahr, 2018). Developing caregivers’ skills matters because caregivers who received training and information relating to recognising mental health issues, may seek help timeously (Thurston et al., 2016). Supporting skills development was identified as a common supportive need (Cavaleri et al., 2011) among caregivers. It is in this regard that healthcare professionals can offer the necessary support by providing information and training to this invisible group of informal helpers in resource-restrained communities. 2.7.3 Need for professional assistance Caregivers are in desperate need of assistance from healthcare professionals and services. They struggle to cope, and experience loss of control owing to problematic behaviour by adolescents. Too often, caregivers seek professional help that appears to fail to provide support (Choate, 2015). Caregivers need help from healthcare professionals, to educate and train them (Ford et al., 2016). According to Dixe et al. (2019), nurses are the professionals from which caregivers prefer to receive information. 54 Healthcare providers should concentrate more on caregivers’ needs (Chadda, 2014). Sintayehu et al. (2015) report that female, rural, and uneducated caregivers who look after care recipients who are at risk of developing mental health issues need more attention. Rural caregivers of children with special needs experienced higher dissatisfaction with health services, or the lack thereof (Denby & Bowmer, 2013). Another viewpoint of caregivers was that they lacked access to competent healthcare professionals who understood the healthcare needs of children (Suriati et al., 2011), especially in rural communities (Brazil et al., 2014) that had limited support networks. 2.7.4 Support network needs A strong support network can alleviate the caregiving burden and reduce unmet needs (Huus et al., 2017; Fernandes & Angelo, 2016), thereby achieving a better sense of well-being in caregivers (Letvak, 2002). Caregivers endure isolation due to stigmatising views related to care recipients’ conditions (Lushin & O’Brien, 2016), and long for support from family and friends in these stressful caregiving situations. However, family support is not always seen as useful or desirable, because caregivers do not want to burden the family, or because caregivers are embarrassed (Choate, 2015; Kuhn & Laird, 2014). In this light, Hoagwood et al. (2010) argue that the family can be a source of support, especially when caregivers experience shame or are the recipients of negativity from the community. These authors provide evidence that support networks can reduce caregiver burden, though research by McDonald et al. (1996) on caregiver stress states that support interventions should not replace family or relative support in caring for children. Thoits (2010) defines social support as informational, practical, or emotional assistance from various family members, friends, or peers. She states that social support could lessen the impact of stress on caregivers’ well-being. Support networks determine the emotional well-being of caregivers and make them feel cherished. 55 2.7.5 Emotional needs Emotional or psychological needs relate to subjective feelings of what caregivers require to improve their well-being (Kim et al., 2017; Chien & Lee, 2013). An understanding of caregivers’ emotional needs could assist in determining the support they need. Powerlessness and negative feelings cause emotional discomfort in caregivers (Steding, 2016; Choate, 2015; Grobler & Roos, 2014; Logsdon & Robinson, 2000). Emotional well-being impacts caregivers’ quality of life (Kim et al., 2017) and, therefore, support to caregivers can minimise stressors. Stressors and anxiety are seen as psychological factors that impact an individual’s perception of well-being, implying higher burdens (Toledano-Toledano & Domínguez-Guedea, 2019). King et al. (1999) also mention being worried, depressed, and strained as variables of emotional well-being in parents, while Koerting et al. (2013) also mention fear. Caring for children caused substantially more stress than caring for other family members (Reardon et al., 2017; Penning & Wu, 2016). Lee et al. (2016) conclude that parental stress results from children’s behavioural problems, which influence parents’ emotional well-being, while Tomlinson (2013) claims that caregivers of children with emotional and behavioural issues experience high stress levels. Thus, it is important to ensure caregiver well-being by providing emotional support, especially in resource-constrained environments. Caregivers perceive support as essential for improving their self-worth, self-efficacy, and coping behaviour (Gupta et al., 2015). The rationale for addressing caregivers' emotional needs is to reduce burdens, enhance their well-being, and eliminate stressors. Emotional needs can be addressed through community support as well as spirituality and religious activities (Grobler & Roos, 2014; Talley et al., 2014). 2.7.6 Spiritual needs The caregiving role is also associated with spiritual needs (Talley et al., 2014; Sawatzky & Fowler-Kerry, 2003). Some families mentioned a lack of support from faith-based organisations in a study conducted in Ghana. Certain mothers felt that prayers and attending church activities helped them to cope better and to care for 56 their child with an intellectual disability (Oti-Boadi, 2017). Scharlach et al. (2001) investigated caregivers’ spiritual needs and found that African American caregivers tap into faith-based support to mitigate their stress, whereas Talley et al. (2014) similarly found that African American caregivers suffered less burden and emotional distress because of attending religious or church activities. Schor (2003) state that families involved in religious activities ameliorate adolescents’ risky behaviours, such as substance use. Faith-based organisations could provide support networks to vulnerable families in rural communities (Berry & Malek, 2017). Pelentsov et al. (2015) found that parents reported on spiritual needs, such as a crisis of faith and questions about their spirituality, and tried to make sense and meaning of the circumstances. Religious beliefs assist in coping with caregivers’ well-being (Sawatzky & Fowler-Kerry, 2003), as does attending church support groups (Letvak, 2002). Faith-based organisations in communities could be a cost- effective way to support caregivers. Traditionally, rural communities tend to rely more on culture and religion to deal with stressors. Partnerships with faith-based groups could provide education and training to caregivers through support groups (Talley et al., 2014). The broader community, including teachers, regional and faith leaders, could intervene with supportive initiatives relevant to community needs (Zuurmond et al., 2019). Caregiving is stressful (Penning & Wu, 2016) and is compounded further by financial burdens (Huus et al., 2017; Talley et al., 2014; Suriati et al., 2011) in resource-constrained environments. 2.7.7 Financial needs Economic challenges, such as transport costs, could occur due to poverty and unemployment, which is ubiquitous to South Africa (Burger & Christian, 2018; Christian, 2017; Greeff & Nolting, 2013; Mavundla et al., 2009). Indeed, Henning- Smith and Lahr (2018) describe the core challenges of rural caregivers that cause financial burdens, namely, transportation and access to resources. Rural caregivers in Australia also experienced stress associated with financial difficulties (Hussain et al., 2018). Caregivers may feel overwhelmed by financial challenges (Sukeri et al., 57 2017), and this affects their quality of life (Deeken et al., 2003). Acknowledging caregivers’ financial needs is fundamental (Buckner & Yeandle, 2015; Suriati et al., 2011). The degree to which caregivers perceive their needs being unmet should not be ignored. Given these various unmet needs, targeted initiatives should be developed to support caregivers, to improve their well-being and quality of life. 2.8 TARGETED INITIATIVES FOR CAREGIVERS It is vital to develop appropriate and ongoing initiatives to support caregivers optimally by understanding and targeting their individual needs (Montgomery & Kosloski, 2009; Taylor-Richardson et al., 2006). Supporting the unmet needs of caregivers, like pillars in a healthcare environment (Brown & Brown, 2014), may strengthen their caregiving behaviour, subsequently developing better coping skills and improving the family’s well-being (Stavrou et al., 2017; Talley et al., 2014; Oruche et al., 2012). Suitable initiatives, together with community awareness and support, may assist caregivers in their caregiving activities (Chang et al., 2016; Bastawrous & Armstrong, 2013). Altogether, support initiatives that provide training, information, and emotional resources to caregivers in their settings are imperative for effective caregiving. These authors propose, furthermore, involvement by local government or faith-based organisations to support caregivers. Forming community partnerships with vital stakeholders, families, and policymakers is a valuable resolution (Vining, 2019). Useful initiatives may promote emotional health and reduce the caregiving burden (Lahr & Henning-Smith, 2018). Supporting caregivers through ongoing practical, tailored initiatives may alter their stress levels during caretaking. It may be worthwhile in the long run. Initiatives targeted at caregivers should take into account various elements, including age group, racial, and socio-economic background (Lahr & Henning-Smith, 2018; Talley et al., 2014; National Alliance for Caregiving & AARP, 2009). Vining (2019) states that support initiatives for addressing the needs of caregivers should be culturally congruent. Contextualised initiatives could advise policymakers and contribute to evidence-based practice. Moreover, initiatives that are designed ought 58 to be analytical and detailed, to ensure that both caregivers and care recipients reap the benefit thereof (Van Houtven et al., 2011). Researchers should be mindful of caregivers with actual needs by reforming planned initiatives to deliver support and resources (Brown & Brown, 2014), thereby also boosting their self-efficacy, attitudes, skills, and coping mechanisms (Isa et al., 2016; Abera et al., 2015; Kate et al., 2013; Olin et al., 2010). Ongoing support through effective initiatives may reduce caregiver stress (Sintayehu et al., 2015) and increase their well-being (Corralejo & Rodríguez, 2018; Tarver et al., 2014). Others authors maintain that designing applicable caregiver initiatives in low-income and resource- constrained environments may lend support and access to relevant education needs (Healy et al., 2018; Tilahun et al., 2016; Forehand et al., 2014) One other point to note is that initiatives with caregiver elements that equip them with skills, information, support networks, and efficient caregiving behaviour are essential in the prevention of mental health issues (Corralejo & Rodríguez, 2018; Bingham, 2017; Epstein et al., 2015; Tarver et al., 2014). Some studies emphasise that resourceful initiatives should be commonly available at low cost, to empower caregivers by strengthening their abilities and eradicating mental health issues (Patel et al., 2008; Saraceno et al., 2007). Initiatives to support caregivers require transformation, to empower families, communities, schools, leaders, and policymakers by changing negative attitudes related to adolescent mental health (WHO, 2014; Flisher et al., 2012; Patel et al., 2008). Healthcare systems are challenged by a lack of resources, but still have an undeniable role to play in supporting the public. The burdened healthcare system needs to empower the public and communities to deliver healthcare through information communication technology (ICT) initiatives (Royston et al., 2015; Telenor Group, 2012). Healthcare services and information are now readily available to anyone, anywhere, and at any time (Aceto et al., 2018; Negash et al., 2018; Genz et al., 2015) through communication technologies. Communication technologies do not only have the potential to deliver healthcare services, information, and treatment (Negash et al., 2018), but can boost the individual’s well-being and quality of life (Ellery & Ellery, 2012). 59 2.9 CHAPTER SUMMARY This literature chapter introduced discussions on a number of key issues that are essential for laying a foundation to understand the caregiver and care recipient context. The chapter, furthermore, reviewed concepts related to caregivers and established general caregiver characteristics. The profile and prevalence of South African caregivers were outlined. Adolescents with mental health issues, as care- recipients, related concepts, caregivers and cultural roles in the context of mental health issues were explored. The discussions proceeded to explain mental health indicators, risk factors and prevention of risk factors, as well as the prevalence of mental health issues in adolescents. It was clearly pointed out that caring for adolescents with mental health issues impacted the caregiver, including increasing the burden on the caregiver and affecting the caregiver’s well-being negatively, which lead to caregivers experiencing various unmet needs. The information in this chapter will serve to guide our understanding in the investigation into the need for initiatives targeted to caregivers, especially those from rural areas. Chapter 3 will continue to explore literature related to caregiver initiatives, by addressing communication technologies, with the focus on mobile health (mHealth). 60 CHAPTER 3: LITERATURE REVIEW: MOBILE HEALTH COMMUNICATION TECHNOLOGY AND THE CAREGIVERS OF ADOLESCENTS WITH MENTAL HEALTH ISSUES “The problems are solved, not by giving new information, but by arranging what we have known since long.” -Ludwig Wittgenstein5- 3.1 INTRODUCTION This chapter presents the results of a literature search done via various scholarly databases. The researcher relied on this vast selection of sources related to communication technologies in order to provide a coherent synthesis that could serve as a foundation for the study. This literature review aims to position research presented in Chapters 4, 5 and 6, which will inform the overall aim of the study. In this section, the researcher explores communication technology and its potential to support rural caregivers by explaining the communication technology landscape and associated eHealth milieu. Then, a description of the mHealth landscape follows, which focusses on mHealth characteristics and its relation to caregiving. It is important to take note of the benefits and barriers of mHealth initiatives as a way to support caregivers of adolescents with mental health issues living in a rural area. Keeping the potential benefits and barriers in mind, the focus is on caregivers’ readiness to adopt mHealth initiatives as a support tool. An understanding of the relevant legislation, both internationally and locally, was judged to be a necessary part of the discussion of this topic. Finally, mobile phone technology is explored, as a vehicle for caregivers to use messaging, call services and mobile applications. 3.2 INITIATING COMMUNICATION TECHNOLOGY AS SUPPORT TO CAREGIVERS OF ADOLESCENTS WITH MENTAL HEALTH ISSUES Communication technology as a support initiative can transform healthcare by addressing various healthcare problems through appropriate applications of technology in information dissemination, information access, or assisting in decision- 5 https://libquotes.com/ludwig-wittgenstein/quote/lbu9n2k 61 making (Marin et al., 2017; Delponte et al., 2015; Avgar et al., 2012; Danis et al., 2010). The last two decades distinguished themselves as the so-called information age (Aceto et al., 2018; Farrell & McKinnon, 2003), and the commencement of the fourth industrial revolution (Lee et al., 2018; Schwab, 2015), through which access to information proliferated through digital distribution (Ellery & Ellery, 2012; Eysenbach & Jadad, 2001). 3.2.1 The communication technology landscape Communication technology can distribute, gather, generate, communicate, and process information electronically through the Internet, using different devices, including computers, handheld devices, cellular phones, cable TV, tablets, and other wireless devices (David, 2015; Hollis et al., 2015; Free et al., 2013). Communication technology that provides support and information is divided into traditional and modern technologies. Traditional technologies include radio, television, and landline telephones, while modern technologies include computers, mobile phones and the Internet (Hemmat et al., 2017; Davis et al., 2016; Delponte et al., 2015). Hilty et al. (2017) explain the diversification of communication technology terminology further, by including examples of terms like Internet-based, online, telehealth, e-mental health, web-based and digital health. Oldenburg et al. (2015) use the term digital communications to refer to the use of several devices and platforms to integrate text, photos, videos, 3-D images, and virtual reality. Digital communication technologies for healthcare (digital health) originated from electronic healthcare (eHealth), of which mobile healthcare (mHealth), also called wireless health, is a subdivision (Istepanian & Woodward, 2017; Mechael et al., 2012; Mehregany & Saldivar, 2012). Healthcare services provided through mHealth and eHealth, consist of hardware, software, media, and networks to collect, communicate and present information via calls, data, messages, images, and text (Marin et al., 2017; Delponte et al., 2015; Källander et al., 2013; Källander, 2010). Rigby and Ammenwerth (2016) claim that communication technology could, however, be detrimental to consumers and is not without harmful consequences. They go as far as implying that health communication technologies can cause direct 62 harm because of inept or inadequate health systems. Indeed, the researcher’s own opinion is that communication technology can be risky for consumers, especially when there is inadequate quality assurance of the content displayed or distributed. The sustainability of communication technology might be harmful to consumers in the absence of collaboration between relevant official stakeholders, who should ensure the implementation and maintenance of communication technology. For instance, the European Commission (2014) raised concerns in their Green Paper regarding the transparency of information available on some mHealth solutions. Martin-Sanchez and Aguiar-Pulido (2017) reason that communication technology should be operative, dependable, and easy to use, mainly in underserved populations that face some challenges relating to equity, cultural issues, and language barriers to communication technology use. The argument of Mesko et al. (2017) convinced the researcher that we need to know more about the importance of the sustainability of communication technology, considering the rigid regulations, stakeholder resistance to change, and disregard of the human factor by digital health, which could transform culture. Providing healthcare through technologies should include improving digital literacy; otherwise, consumers might experience problems using electronic devices in the “jungle” of electronic healthcare information. 3.2.2 eHealth milieu Aceto et al. (2018), the Registered Nurses’ Association of Ontario (2017), and Pagliari et al. (2005) all define eHealth as using electronic information and communication applications for healthcare. After a scoping review, Pagliari et al. (2005), furthermore, distinguishes broad variations in eHealth definitions. In their review, these authors mapped eHealth classifications according to functionality, contexts, participants, and theoretical issues. Concepts covered in this review are that eHealth targets decision-making, support, and health information to consumers. eHealth is linked mainly to operational communication, through digital technologies (the Internet). The WHO (2016b) declares that eHealth is an industrial ICT application for providing healthcare services, health education, and knowledge, among other activities, to 63 support healthcare. Kreps et al. (2008) discuss the remarkable qualities of eHealth to transform healthcare communication through interaction, media content and contextualising, and personalising configurations to reach diverse populations. Leading authors, Eysenbach and Jadad (2001), declare that providing a clear definition of eHealth is difficult, although some comprehensive definitions appear in the literature. They suggest the following definition of eHealth on page 2: e-health is an emerging field in the intersection of medical informatics, public health, and business, referring to health services and information delivered or enhanced through the Internet and related technologies. In a broader sense, the term characterizes not only a technical development, but also a state-of- mind, a way of thinking, an attitude, and a commitment for networked, global thinking, to improve health care locally, regionally, and worldwide by using information and communication technology. Furthermore, they point out that the “e” in eHealth signifies more than electronic, but refers to 10 characteristics of eHealth: efficient, enhances quality, evidenced-based, empowers, encourages, educates, enables, extends, ethical, and equity. They also add easy to use, entertaining, and exciting to this extensive list. Eysenbach and Jadad’s definition of e-Health is instrumental and descriptive enough, according to the researcher. Amalgamated electronic and personal communication can promote better public health outcomes by revolutionising healthcare for underserved and disadvantaged populations (Perrino et al., 2018; Neuhauser & Kreps, 2011). Adapting eHealth to individual information preferences, demographics, and health qualities is upcoming in LMIC’s status quo of healthcare (Neuhauser & Kreps, 2011). Digital technologies, inclusive of eHealth and mHealth, continue to transform and scale-up healthcare. Shifting from eHealth to mHealth can strengthen healthcare delivery by producing customised initiatives that support and empower communities (World Bank Group & WHO, 2016; Källander, 2010). With this in mind, and due to its popularity, the researcher was motivated to explore mHealth as a possible initiative to support caregivers in rural environments. 64 3.3 THE MHEALTH TECHNOLOGY LANDSCAPE Providing healthcare through mobile technologies has become popular in all corners of the world, even among the poorest people (Aceto et al., 2018; Delponte et al., 2015; Akter & Ray, 2010). mHealth emerged from eHealth, as a unique solution to facilitate healthcare, service delivery, and information about health problems to the public, across the board (Davis et al., 2016; Källander, 2010). According to Malvey and Slovensky (2014), mHealth has four possible functions in healthcare; that is, health prevention, observation, treatment, and support. These functions pertain to health awareness, assessment of diseases, and care delivery, along with supporting the care recipient and the caregiver. The broad penetration of mobile phones into all income-level homes has lead to a remarkable evolution in healthcare delivery (Delponte et al., 2015), coupled with burgeoning research into healthcare technologies connected to low-income settings – this research is taking hold in developing countries (Chand et al., 2016; Chib et al., 2014; Mechael et al., 2012; Chigona et al., 2011). When it comes to this life- changing initiative, most researchers agree with the technological breakthroughs reported in research studies about the role of mHealth in healthcare. There is a degree of uncertainty about the definition of mHealth, and the researcher believes it is necessary to report different perspectives to clarify the concept. Istepanian (1999) and Istepanian and Lacal (2003) were the first to invent and define the term mHealth. According to this definition, mHealth is wireless eHealth, which offers accessible healthcare through mobile communications and multimedia technologies. Likewise, Mechael et al. (2012) claim that mHealth is a subset of eHealth, whereby health services are delivered through mobile devices and, furthermore, enables anyone, at any time, to access healthcare for advice and information through an interactive process employing mobile technologies (Akter & Ray, 2010). Whereas the abovementioned authors provide sufficient examples of mHealth definitions, the opinions of Davis et al. (2016) and the WHO (2011) regarding definitions of mHealth are in conflict with those of these authors. Davis et al. (2016) declare that similar definitions of mHealth occur in literature, and, in a report in 2011, 65 the WHO indicates that no standard mHealth definition has proven to be up to date; at the same time, the WHO states that mHealth is an element of eHealth. The researcher disagrees with these views claiming that no clear definition of mHealth exists. Instead, she endorses the definition Istepanian provided almost eight years earlier than the WHO, and 13 years before Davis et al. However, we should note that modernisation of technology over the years might affect the definition of mHealth, such as adapting technology-related terms to match current trends. 3.3.1 Characteristics of mHealth technology in healthcare The popularity of mHealth practices in healthcare has increased globally, and it influences individual, community and provincial health behaviour and health outcomes (Bishwajit & Dawah, 2014; Hall et al., 2014; Kahn et al., 2010). Initially, the creation of mHealth technologies for healthcare transpired mostly in high-income countries, although, today, mHealth infiltration in LMICs surpasses that of their more affluent counterparts. Severe limitations faced by LMICs, attributable to disease burdens, weak economies, inadequate infrastructure and shortcomings in human and physical resources could affect mHealth development (Malvey & Slovensky, 2017; Bastawrous & Armstrong, 2013; Malvey & Slovensky, 2014). The European Commission (2014) reports that mHealth services in Africa and Asia concentrate predominantly on advancing the effectiveness of healthcare systems and labour forces. In South Africa, a more important benefit is gained from mHealth messaging in disease prevention and awareness. Employing mHealth technology in healthcare systems is emergent among researchers, and its use continues to increase, mainly in the public health sector. The focus of mHealth initiatives in public health is on health prevention and promotion, rather than disease management (Varshney, 2014; Chigona et al., 2011). Some other uses of mHealth technologies are appointment reminders, sending test results, assisting with decision-making, data collection, communication between healthcare professionals and care recipients, disease self-management, encouraging treatment adherence, providing information and education, and clinical management (Kabashiki, 2015; Hall et al., 2014; Free et al., 2013; Kumar et al., 2013). Furthermore, Labrique et al. (2013) report general supplemental mHealth 66 applications, namely, maintaining electronic health records, doing behaviour change communication, and training and educating care providers. mHealth technologies deliver ongoing healthcare support to individuals, including the caregiver population, through customised initiatives as required (Free et al., 2013; Kumar et al., 2013). Given these explanations, the researcher believes that mHealth have demonstrated the necessary qualities and prospects to appropriately support the individual caregiver with information, education, training and behaviour modification, to guide decision-making, and communicate with healthcare professionals. Anderson-Lewis et al. (2018) propose that mHealth technologies could address caregivers’ needs through customising health information according to their individual preferences. They also determined the value of mHealth technologies for under-resourced communities, by minimising health disparities. The popular and flexible technological abilities of mHealth underscore its suitability in supporting individuals, including caregivers (Free et al., 2013) in caregiving practices. 3.3.2 mHealth and caregiving We have seen a shift, from traditional healthcare to modern healthcare, in which face-to-face interventions have been replaced by available technology. mHealth technologies are moving out of traditional paradigms, thereby complementing the modernisation of the era. Modern healthcare represents health equity through reciprocal information transfer between healthcare professionals, care-recipients, family members, and caregivers (National Academies of Sciences, Engineering, 2018; Baumel et al., 2016). Gunther (2018) continues by explaining that caregivers and families are vital partners in providing care in the community. As part of the public, these caregivers need multiple skills and knowledge to ensure health promotion and prevention; this knowledge is needed to manage various life events by way of strengthening health literacy in households. Communication technologies offer exceptional opportunities not provided by traditional healthcare, in that they can be tailored according to individual preferences, demographics, and health features. Such technologies are appropriate to enable the 67 user to use it anywhere they wish, at a time that suits them (Mitchell et al., 2014; Kreps & Neuhauser, 2010). Emergent mHealth technologies supply support and information through their infrastructure and devices, and offers the potential for exponential growth in healthcare (Negash et al., 2018; Gururajan et al., 2008), mainly among caregivers in home and community care settings (Davis et al., 2016; Gentles et al., 2010). Caregivers of children with special needs could benefit from communication technology when their support needs are unmet (Mitchell et al., 2014; Park et al., 2016). Armoiry et al. (2018) reviewed literature and found that caregivers accept that communication technology provides the ability to communicate with healthcare professionals regarding caring for young people. Accordingly, caregiving tasks aided by the use of mHealth technologies could improve the health outcomes of the caregiver, as well as that of the care recipient (Chi & Demiris, 2015; Mitchell et al., 2014; National Alliance for Caregiving & AARP, 2009). Some caregivers said that they try “to figure caregiving out” as they go along during their caregiving responsibilities (Cady & Belew, 2017); mHealth can connect caregivers to the information and knowledge they need to care for care recipients. Mobile technologies can create a gateway to information portals and knowledge, thereby enabling caregivers to guide their decision-making related to caregiving practices (World Bank, 2012; Kalil, 2009; Goel et al., 2013). Caregivers who are actively involved in accessing information portals improve their well-being (WHO, 2018a) and build their capacity (Mitchell & Kan, 2019) by this involvement. Supporting caregivers could ensure effective caregiving, by supporting them with useful mHealth initiatives during challenging times. The effectiveness of technologies depends on the involvement of caregivers as end-users of the product. Each caregiver experiences unique challenges in various situations, which require customised support initiatives (Tang et al., 2018; Chi & Demiris, 2015). Chi and Demiris (2015) examined literature and found that caregivers’ outcomes improved significantly when they utilised communication technologies. These authors rank caregiver enhancements as follows: better emotional health, greater satisfaction with/confidence in technology use, greater skills/knowledge, improved quality of life, 68 increased support and coping skills, improved communication with healthcare professionals, greater cost-effectiveness, and better physical health. However, in contrast, Armoiry et al. (2018) found uncertain outcomes associated with caregivers using communication technology, although no studies indicated adverse effects. In most studies, the caregivers found the communication technology acceptable and apparently believed in its benefits. 3.3.3 Benefits and barriers of mHealth initiatives The field of mHealth is influencing healthcare delivery, and researchers are optimistic about this rapid innovation that is accepted by most caregivers. At the same time, one should acknowledge the benefits and barriers inherent in technology engagement by caregivers and community members. Benefits and barriers of mHealth technology usage may comprise several factors, including socio-cultural elements, age, ethnicity, geographical area, demographic features, motivation, costs, literacy, culture, and applicability to the user. Acknowledging that these factors could hamper or enhance mHealth initiatives may influence the planning of the initiatives. Whether users (caregivers, in this case) adopt mHealth initiatives depends on their perception of its usability, including benefits and barriers of the mHealth initiative to them personally (Feroz et al., 2018; Miyamoto et al., 2016; Hardiker & Grant, 2011; Jimison et al., 2008). 3.3.3.1 Benefits of mHealth adoption Communicating mHealth as useful initiatives for caregivers will complement caregiving behaviour and meet healthcare needs. Research studies indicate that mHealth has several benefits, which are supported by anecdotal evidence in developing countries (Lee et al., 2018; Jusoh, 2017; Gautham et al., 2015; Burney et al., 2013) – Table 3.1 lists the benefits of mHealth adoption. 69 Table 3.1: Benefits of mHealth adoption Benefits References To motivate caregivers to Alkiş and Findik-Coşkunça (2018); Kampmeijer et al. change their behaviour (2016); Hilty et al. (2015) To support caregivers (e.g., Jusoh (2017); Njoroge et al. (2017); Berrouiguet et al. peer and social support; health (2016); Kampmeijer et al. (2016); Park et al. (2016); support; electronic support; Li (2015); Dyer et al. (2012) psychological support) To receive, exchange or access Anderson-Lewis et al. (2018); Brinkel, Dako-Gyeke, et information al. (2017); Jusoh (2017); Kampmeijer et al. (2016); Burney et al. (2013); Bhavnani et al. (2008) To educate caregivers Anderson-Lewis et al. (2018); Jabour et al. (2018); Bajwa (2014); Burney et al. (2013); Bhavnani et al. (2008) To save time (travelling) Brinkel, Dako-Gyeke, et al. (2017); Jusoh (2017); Brinkel et al. (2014); Malvey and Slovensky (2014) Reliable and easy to use Brinkel, Dako-Gyeke, et al. (2017); Kampmeijer et al. (2016); Delponte et al. (2015); Jimison et al. (2008) Accessible and available Ploeg et al. (2017); Becker (2016); Davis et al. (2016); Kampmeijer et al. (2016); Malvey and Slovensky (2014) Convenient Malvey and Slovensky (2014); Oksman (2010); Jimison et al. (2008) Helps at home Kampmeijer et al. (2016); European Commission (2014); Malvey and Slovensky (2014) Cost-effective Brinkel, Dako-Gyeke, et al. (2017); Ploeg et al. (2017); Malvey and Slovensky (2014); Bishwajit and Dawah (2014); Burney et al. (2013) Equal healthcare Bishwajit and Dawah (2014); Malvey and Slovensky (2014); Akter et al. (2010) Community development and Feroz et al. (2018); Brinkel, May, et al. (2017); Malvey capacity building and Slovensky (2014) Quality healthcare services Malvey and Slovensky (2014); Burney et al. (2013) 70 3.3.3.2 Barriers to mHealth adoption Although mHealth holds definite benefits to caregivers and healthcare, one should also be aware of the barriers when planning mHealth initiatives – Table 3.2 lists barriers to mHealth adoption. Table 3.2: Barriers to mHealth adoption Barriers References Inadequate funding Scott and Mars (2013, 2015) Inadequate policies and Kampmeijer et al. (2016); Townsend (2015); Mars legislation and Scott (2010) Lack of government and Townsend (2015); Jahan and Chowdhury (2014); political awareness Ivatury et al. (2009) Cultural challenges Scott and Mars (2015); Townsend (2015) Inadequate resources (human, Kampmeijer et al. (2016); Scott and Mars (2015); technical and infrastructure) Jahan and Chowdhury (2014) Illiteracy Jusoh (2017); Malvey and Slovensky (2014); Chigona et al. (2011) Poor digital literacy Jusoh (2017); Scott and Mars (2015); Jahan and Chowdhury (2014) Resistance to change Scott and Mars (2013, 2015) High costs Jusoh (2017); Jahan and Chowdhury (2014); Scott and Mars (2013); Akter et al. (2010) Poor information and Scott and Mars (2015); Jahan and Chowdhury (2014) education culture Limited technology access and Kampmeijer et al. (2016); Jahan and Chowdhury training (2014); Malvey and Slovensky (2014); Chigona et al. (2011); Akter and Ray (2010) Socio-demographic challenges Eren and Gökalp (2018); Kampmeijer et al. (2016); (age, gender, income levels) Khatun et al. (2016); Khatun et al. (2015) Poor quality of information on Park et al. (2016); Knapp et al. (2011) the Internet Not consumer-centred Park et al. (2016); Schnall et al. (2016; Orlowski et al. (2015) 71 Barriers References Language barriers Feroz et al. (2018); Hartzler and Wetter (2014) The benefits and barriers listed in Tables 3.1 and 3.2 intend to provide an overview of the possibilities when caregivers adopt mHealth. If the benefits fuel adoption, mHealth could shape the mental healthcare of adolescents by transforming the caregiver domain. 3.4 CAREGIVERS’ READINESS TO ADOPT MHEALTH INITIATIVES Knowing more about the benefits and barriers of mHealth adoption leads to the question, how do benefits and barriers of mHealth adoption impact the readiness and adoption of mHealth initiatives by caregivers? Khatun et al. (2016; 2015) developed a conceptual model to determine an underserved community’s readiness for mHealth adoption, and they state that it is important that the community is ready for its implementation, prior to intervention design. These authors described three domains influencing mHealth readiness, namely, technological, motivational, and human resource readiness. Insight into these three domains could guide researchers during the development process of mHealth initiatives. The abovementioned domains highlight some of the benefits listed in Table 3.1. Technological readiness includes concepts such as accessibility, availability, affordability, and technological literacy of users. Motivational readiness, furthermore, comprises users’ intentions, attitudes, and trust to use mHealth initiatives. The last domain portrays the human resource readiness of users, that is, socio-demographic elements, possession of mobile phones, and mHealth services awareness. These domains imply that mHealth benefits can potentially predict the caregivers’ readiness to accept an mHealth initiative, especially in resource- constrained settings. Hardiker and Grant (2011), Jennett and Gagnon (2005), and Feroz et al. (2018) express similar views about mHealth readiness. All three sources characterise certain determinants of users’ uptake of mHealth initiatives. Some factors that 72 illustrate readiness are demographic features, affordability of mHealth, users’ digital literacy and capabilities, trust in mHealth technology, socio-cultural factors, and geographical area. One further perspective mentioned by Hafeez-Baig and Gururajan (2010) is that mHealth adoption hinges on its benefits and barriers. From the researcher’s viewpoint, these determinants of mHealth adoption envision various possibilities for formulating a purposeful framework for the development of mHealth initiatives for the South African caregiver. Ellery and Ellery (2012) point out, furthermore, that researchers should present mHealth technology in “a meaningful, manageable, and comprehensible manner” to ensure better user adoption, while Burney et al. (2013) state that mHealth technologies should be made more available to the beneficiaries. Linking to this idea further, is designing an mHealth initiative according to user preferences, thereby ensuring successful adoption (Ellery & Ellery, 2012). Neither acceptance nor adoption guarantee implementation of mHealth. Successful implementation of an initiative does not occur in isolation, but through collaboration with influential stakeholders from provincial and national departments of health, together with well- defined regulatory legislation in the relevant sectors. Feroz et al. (2018) and Aamir et al. (2018) report another challenge regarding mHealth adoption. Both discuss the limited engagement of government and the public in mHealth adoption, including insufficient mHealth policies in LMICs. Governments should, as a priority, set policy guidelines, as a crucial determinant of mHealth readiness that will ensure effective mHealth services (Khatun et al., 2015; WHO, 2011). Lack of policy guidelines and strategic planning by a government could influence widespread mHealth adoption. Jahan and Chowdhury (2014) assert that mHealth services should be regulated by national information infrastructure, and supported and connected by global information infrastructure. In the next two sections, the researcher will briefly discuss international and national regulation regarding mHealth. 73 3.4.1 International regulation mHealth, as a subset of eHealth, needs similar regulation and policies as eHealth, and should involve multiple sectors. Governments should collaborate with the healthcare and mobile communications sectors to support mHealth initiatives by providing regulatory guidelines (Townsend, 2015; WHO, 2011). Transformational leadership in governments is pivotal to ensure policymaking and regulations supporting mHealth development and implementation (Townsend, 2015; World Bank, 2012; WHO, 2008b). Most governments in LMICs lack interest in adopting mHealth and ICT technologies. Legislation in some developing countries is also lagging, while more individuals are ready to adopt this innovative solution as a supportive health initiative in resource- constrained environments. Even though governments in developing countries have access to plenty of reports, analysis, and guidance from the international arena, they believe that such information does not always apply to their context (Peters, 2008). Consequently, they neglect making regulatory and legislative provisions to regulate the use of mHealth in healthcare. mHealth legislation can “disappear” between various policies formulated for eHealth, the health sector, ICT, government policies, and human rights issues. Limited investment and funding shortages also discourage developments in the mHealth landscape (Feroz et al., 2018; Townsend, 2015; Scott & Mars, 2013). The question that arises, then, is why governments of developing countries do not actively create, plan and formulate context-applicable legislation that fits their situations. Furthermore, in addition to questions about formulating plans, we could ask why governments do not implement legislation and policy frameworks that will ensure safe, secure, and trusted digital participation by public individuals (Gillwald, 2018; Gillwald et al., 2018; Mechael et al., 2010). Ignorance of the capabilities of and political barriers facing adoption of mHealth by policymakers were mentioned in literature as some of the barriers to legislation formulation (Peiris et al., 2020; Townsend, 2015; Jahan & Chowdhury, 2014). The WHO (2008b) encourages eHealth (including mHealth) strategies and policy development, to ensure sound standards of ICT guidelines in healthcare. Good 74 governance can facilitate legislation, investments, and infrastructure when planning ICT frameworks for diverse, multi-language communities in a digital world. Sustainable strategies and effective governance of mHealth initiatives can be established through multiple partnerships between the government, local officials, healthcare organisations, universities, the private sector, and sponsors (Barkman & Weinehall, 2017; WHO, 2012b; World Bank, 2012; WHO, 2011). Further infrastructure challenges facing mHealth diffusion in some countries are problems relating to inadequate funding, legal and regulatory issues, lack of political will and interest, technical problems, and competing interests. Various political, social, economic, and technical environments can influence mHealth adoption and relevant legislation (Malvey & Slovensky, 2017). A survey to determine the existence of national policies among the WHO member states shows that 58% of these countries had eHealth strategies in place, and 57% of the member states mentioned telehealth policy, specifically, within their national eHealth policy, or reference to it. Some member states (19%) indicated they had social media policy within government organisations, while 33% of member states reported policies regarding medical liability, and 47% of member states had policies about safety, quality, and standards of health-related information (WHO, 2016b). Hämäläinen et al. (2008) summarised the general aims of European member states' eHealth policies, namely, public-oriented healthcare, quality care, improving communication between parties concerned, efficiency, and healthcare access. Thus, supporting mHealth environments is the government’s responsibility. This means that individuals (caregivers) and healthcare professionals have the right to vital, available, actionable information that could protect their own health, as well as that of the care recipients (Royston et al., 2015; Bhaumik et al., 2013). An mHealth policy in the healthcare context can prescribe standard principles on how the mHealth strategy should be planned, implemented, sustained, and evaluated by all relevant stakeholders. This is currently a challenge in South Africa. 75 3.4.2 South African legal framework and regulation It is a given that national governments and policymakers have to work together to guarantee scaling up of mHealth initiatives in healthcare; however, how is this cooperation impacted by incomprehension or weak political will? The South African mHealth strategic plan of 2015-2019 (Department of Health, RSA, 2019), refers to the absence of mHealth and eHealth framework to guide mHealth projects. This strategic plan continues by saying that a standardised framework is necessary to guide policymakers and healthcare managers during mHealth planning and implementation. Governance and regulation are seen as the fourth priority, according to this plan. A key action was to develop a national mHealth policy framework, which was finalised and adopted by the National Health Council (Department of Health, RSA, 2019). mHealth policy frameworks are particularly important to healthcare professionals, healthcare organisations, PHC clinics, hospitals, service providers, mobile network operators, and mHealth providers. Such a policy can set certain protective conditions regarding privacy, data protection, cybersecurity, information access and trusted environments (Gillwald et al., 2018; MEASURE Evaluation SIFSA, 2016). Legislation and regulatory organisations should protect users by providing regulation in the mHealth setting; however, there seems to be ambiguity regarding mHealth regulation in South Africa. Regulations struggle to keep up with rapid technological advances, though regulatory bodies must monitor the situation. See Table 3.3 for the current legislation applicable to mHealth and caregivers in South Africa. 76 Table 3.3: Current South African legislation (acts, policies, frameworks, committees and associations) applicable to mHealth and caregivers Forms of legislation Function/description Protection of Personal The act specifies minimum requirements for the Information (POPI) Act of 2013 processing of personal information, which is defined as information on any identifiable living person (or, South Africa (2013) in South African terms, any juristic person, which includes companies). The Independent Established a regulator to oversee broadcasting, Communications Authority of telecommunications, and postal services. ICASA South Africa Act No. 13 of 2000 licenses broadcasters, signal distributors, and (ICASA Act) providers of telecommunication services – including mobile network operators – and issues the South Africa (2000) frequency spectrum on which they operate. Electronic Communications Act These acts aim to address issues of accessibility, of 2005 availability, and affordability of ICT services in the country. Electronic Transactions Act of 2005, and the Broadband Policy South Africa, (2006b) Nursing Act, 2005 (Act No. 33 of “To uphold and maintain professional and ethical 2005) standards within nursing by controlling and exercising authority over practices pursued by South Africa (2005) registered nurses, midwives, enrolled nurses, and enrolled nursing auxiliaries. Because nurses are the biggest workforce sector in public health facilities, the SANC [South Africa Nursing Council] should also guide how nurses should engage with mHealth initiatives.” Health Professions Act, 1974 To serve and protect the public and to provide (Act No. 56 of 1974) guidance to registered healthcare practitioners. South Africa (1974) Children’s Act 38 of 2005 “A comprehensive national strategy aimed at securing the provision of prevention and early South Africa (2006a) intervention programs to families, parents, caregivers, and children across the Republic.” District Health Management It provides a formal regulatory framework for the Information Systems (DHMIS) DHMIS under the National Health Act of 2003, Policy which empowers the minister to establish the legal framework for health information systems. South Africa (2011) The National Cybersecurity To promote and ensure a comprehensive legal Policy Framework (State framework governing the cyberspace, and aims to 77 Forms of legislation Function/description Security Agency, 2015) implement an all-encompassing approach on all the role players South Africa (2015) The National Health Normative The HNSF sets the framework for interoperability of Standards eHealth, and specify a standards-based health information exchange and an enterprise architecture Framework for Interoperability in as central to the implementation of interoperability eHealth (HNSF) (Department of going forward for the healthcare in the public sector. Health, 2014) CSIR and Department of Health (2014) National Health Information Includes the “development of policies and Systems Committee of South regulations to govern information management in Africa (NHISSA) the health sector”. Health Information Task Team (2011) White Paper on Families in Views the family as a key development imperative South Africa and seeks to mainstream family issues into government-wide policy-making initiatives in order to Department of Social foster positive family well-being and overall socio- Development, RSA (2013) economic development in the country. Governments are responsible for providing enabling environments for mHealth adoption within its legal jurisdiction, and South Africa’s political and legislative nature should be considered. However, national, provincial, or local administrations may function according to the leading political party within that jurisdiction, and this could result in poor governance, human resource scarcity, absent leadership, inadequate infrastructure, and lack of interoperability between all stakeholders (Kotzé & Alberts, 2017; Department Telecommunications & Postal Services, RSA, 2016; CSIR and Department of Health, 2014). Effective scaling up of mHealth adoption in South Africa, aimed at the general public, is fundamental to ensuring service delivery in the health sector of developing countries, and to address healthcare needs (Kotzé & Alberts, 2017; Botha & Booi, 2016; Iyawa et al., 2016). Jahan and Chowdhury (2014) propose specific conditional policy initiatives for developing countries, to enhance mHealth implementation effectively. Such policy initiatives include capacity building of facilities by governments and healthcare 78 professionals to promote mHealth, to construct mobile networks, especially in remote areas, to provide financial and government support and ensure a “reliable nation- wide mobile communication system”, which is, according to the authors relevant to any individual. Policies to anchor mHealth technology adoption by individuals, and strengthening health services should be priorities for policymakers and governments. Research is necessary in this area, to identify gaps to inform policymakers, health services, and the government. Governments have even more responsibility to empower underserved communities with timeous health information and education, knowledge, and skills. MHealth technologies that are monitored by structured legislation could provide such services (Anderson-Lewis et al., 2018; Botha & Booi, 2016; Mars & Scott, 2010; Bhavnani et al., 2008). LMICs in the sub-Saharan African region (South Africa included) can benefit from using mobile technology in healthcare delivery (Sezgin, 2018; Royston et al., 2015) to empower caregivers in their caregiving activities. Some authority should regulate delivering information to families and caregivers through mHealth initiatives. The Children’s Act No. 38 of 2005 (South Africa, 2006a), in Section 144, sets certain principles related to caregivers and families caring for children. These principles have significant consequences in the broader domain of mHealth information and caregivers. The principles indicate the necessity of interventions for caregivers and families, to empower them, and to provide access to information and services. Furthermore, such interventions should focus on caregiver participation and involvement. Section 145 continues with a statement from the minister, who states that there should be “a comprehensive national strategy aimed at securing the provision of prevention and early intervention” programmes to families, parents, caregivers, and children across the Republic of South Africa. What these sections of the Children’s Act are trying to do, then, is to lead policymakers and relevant stakeholders regarding the constitutional right of caregivers (and families) to be supported by the government of South Africa. By focusing on caregiver support, the deeper problem of government underperformance regarding its constitutional responsibility to scale up caregiver support networks and services could be overlooked (Mkhwanazi et al., 2018). Governments should 79 capitalise on supporting initiatives for caregivers, because they play a vital role in influencing the well-being of children. Unsatisfactory performance by the government in coordinating and implementing policies may be due to fragmented administration and poor leadership. Capricious government assurances about delivering policies cloud policy formulation and, eventually, policy implementation. Despite much criticism and execution challenges of South Africa’s Policy Framework for Families, the country remains one of a few that achieved the adoption of such a policy (Department of Social Development, RSA, 2013), and the Department of Social Development approved the White Paper on Families in October 2014 (Rabe, 2017). The White Paper on Families aims to strengthen and empower families, promote family life through optimal opportunities, build family capacity, create a sense of community, and promote social interaction. Meaningful difficulties related to implementation were experienced, causing the White Paper on Families to “exist on paper but not in practice” (L. Patel et al., 2018). In addition to these aims, the White Paper on Families underscores three priority strategies, that is, 1) the promotion of healthy family life; (2) strengthening families (including providing health and community support); and (3) preserving families (through prevention and early interventions) (L. Patel et al., 2018; Rabe, 2017; Department of Social Development, RSA, 2013). Certain challenges related to the execution of The White Paper on Families were identified in a review by L. Patel et al. (2018), namely, lack of knowledge, poor policy integration between government and non-government sectors, “inadequate performance monitoring and evaluation of staff and programs”, lack of clear guidance on implementation and outcome assessment, indistinct policy budget provisions, and limited direction through local and provincial family forums. The White Paper on Families matters, because families are responsible for personal caregiving, including essential behaviour towards the care recipient. The researcher wants to highlight the relevance of one objective set by the White Paper on Families, which is to promote socialising, nurturing, caring, and supporting of the skills of caregivers through capacity building. These skills are vital to meet family and caregiver demands (Department of Social Development, RSA, 2017). 80 Ultimately, when it comes to capacity building, more work is necessary to ensure that caregivers receive adequate information to fulfil their caregiving roles. Information and education strategies for families, in view of L. Patel et al. (2018), are an essential task to be enforced by the Department of Social Development through the implementation of the White Paper on Families. This view matches that of Richter et al. (2018) and the White Paper (Department of Social Development, RSA, 2013), namely, that the government’s responsibility is advocacy for families’ need for healthcare information and education. Returning briefly to the policy vacuum regarding mHealth, the researcher believes that the South African government should commit to policy-focused caregiver legislation, starting with mHealth and the White Paper on Families policies. It is time to take action on the dissemination of healthcare information and education to caregivers through practical initiatives. MHealth initiatives have proven to be practical and promising regarding supporting caregivers globally (Corralejo & Domenech Rodríguez, 2018; White et al., 2017; Royston et al., 2015; Uys, 2015). There is clear proof that the deployment of mHealth initiatives may be meaningful, though not without stakeholder involvement. Altogether, mHealth technologies, with effective legislative frameworks and government support, might offer a solution to unmet healthcare needs among the underserved population. Such technologies are available in various platforms that suit individual preferences and economic situations. 3.5 MOBILE PHONE TECHNOLOGY Mobile phone technologies that are used for mHealth enable individuals to engage with several services with minimal effort, due to their accessibility, availability, and independent location abilities (Sezgin, 2018; Istepanian et al., 2003). Mobile phone technology includes wireless technology, such as mobile phones, smartphones, and tablets, which are integral parts of most people’s lives – they already embrace technology (Botha & Booi, 2016; Corydon et al., 2016). Developing countries, surprisingly, surpassed developed countries regarding penetration of mobile technology. This growth in mobile technology ownership, as well as mobile 81 subscriptions, may be the answer to the burdened healthcare system. Cost-effective healthcare services can be provided through wireless communication technologies, which demonstrate tremendous capability to reduce health disparities (Anderson- Lewis et al., 2018; Istepanian & Woodward, 2017; Burney et al., 2013; Danis et al., 2010). Mobile technology is not only about connecting to other people, but can be utilised effectively in healthcare, due to diverse functionalities, such as short messaging services (SMS), social media, applications, and access to the Internet/Web (Anderson-Lewis et al., 2018; Botha & Booi, 2016; Klasnja & Pratt, 2012). Traditional face-to-face healthcare visits are challenged by limited resources (human, physical, and financial) and may be substituted by mobile phones as “healthcare in a pocket” when demanded (Klasnja & Pratt, 2012; Danis et al., 2010). The researcher has personally experienced overburdened healthcare services characterised by challenges, such as high numbers of care recipients who have to be seen by healthcare professionals, one recipient at a time. These face-to-face visits traditionally occur despite staff shortages in most healthcare facilities in South Africa. In-person healthcare visits can be limited by the implementation of mobile technology support to the broader population simultaneously, independent of individuals’ whereabouts or situations. A mobile phone is “in our hand, in our pocket or purse”, and serves as a personal companion. The convenience of mobile phones may translate into increased opportunities for healthcare services, anywhere, at any time, to anyone (Istepanian & Woodward, 2017; Goel et al., 2013; Klasnja & Pratt, 2012). 3.5.1 The mobile phone as the caregiver’s vehicle to support Mobile phones have specific functionalities that are useful for users in different ways. Exploring this innovative avenue as a vehicle in healthcare delivery may be worthwhile for the caregiver. Mobile phone users commonly use their devices to send and receive text messages, pictures, and videos (Pew Research Centre, 2018; 2015). Such functions can also be valuable in the healthcare context, as mentioned before, and the researcher strongly believes in the possibilities of these functions. 82 Research studies demonstrate how mobile phones are smart inventions for communicating information to individuals in the community while supporting healthcare services (Malvey & Slovensky, 2017; Baig et al., 2015; Malvey & Slovensky, 2014; Goel et al., 2013; Sloninsky, 2008; Kaplan, 2006). Four essential features of using mobile phones as healthcare support initiatives are 1) acceptance of the mobile phone because of its technical abilities, 2) the phone is carried around by the person, 3) the person is attached to their mobile phone, and 4) contextual characteristics (Pew Research Centre, 2018; 2015; Klasnja & Pratt, 2012). Mobile phones play such an important role in peoples’ lives that, if there is no electricity, people will walk long distances just to charge their phones, or will pay others to charge their phones (Woodard et al., 2014). Some customised functionalities of mobile phones include reminders, calendar prompts, personal settings, and message preferences. Adoption and acceptance of mobile phones could be increased by making these personal choices available to each caregiver (Proudfoot, 2013; Klasnja & Pratt, 2012). Such appealing features of mobile phones could possibly contribute to effective healthcare communication, education, support, and information (Goel et al., 2013), and have a positive impact on caregivers' lives (Frisbee, 2014; Talley et al., 2014; Akter & Ray, 2010; Reese et al., 2012). Features of mobile phones, referred to as delivery modes by Lee et al. (2018) and technical capabilities by Patrick et al. (2008), portray the following functionalities: SMS, phone calls, voice and video calling, recordings, Internet access, email, social networking, multimedia services (MMS), e.g., photos and videos, notetaking, software applications, camera and radio (Lee et al., 2018; Aryee, 2014; Ventola, 2014; Free et al., 2013; Akter & Ray, 2010; Patrick et al., 2008). Informational images or videos can be transferred through the SMS and MMS functions, while voice and video calling creates communication between two or more parties. Furthermore, information can be accessed through Internet browsing, and from social network platforms. Additional features include data storage capabilities, and storing information images or video files that can be viewed later at a convenient time (Ventola, 2014; Lefebvre, 2009; Patrick et al., 2008). It has become commonplace to distinguish between basic and smart mobile phones. Basic mobile phones have features such as making and receiving phone calls and 83 sending and receiving SMSs, but have limited computing power, while smartphones are more advanced, almost like mini computers (Keisling, 2015; Klasnja & Pratt, 2012; World Bank, 2012). Given the features of mobile phones, one can deduce that the mentioned functionalities could offer a range of opportunities to provide caregivers with support through acquiring, retrieving, and sharing health information. The researcher attempted to visualise the relationship between mobile phone functionalities, opportunities, and intention of behaviour, according to the IMBP model (Fishbein & Yzer, 2003). Determinants influencing the caregivers’ intention to participate in behaviour are attitude, norms and self-efficacy, while skills and environmental constraints impact actual performance of behaviour (see Figure 3.1). SMS, MMS, and phone calls give the individual (caregiver) the opportunity to either call, send or retrieve information from another individual (peer or professional), a group (support), or the Internet. Through this process, the caregiver receives health information, health promotion, and can be educated regarding a healthcare topic. The essence of this argument is that, when caregivers use any of the mobile phone functions to get information, health promotion, education, and support, they would probably acquire some skills and abilities, and improve their caregiving behaviour. In making this comment, the researcher anticipates reciprocal outcomes, in that caregivers will also share information learned through mobile technology abilities, and adapt caregiving behaviour. 84 Figure 3.1: Mobile phone functions, opportunities, and caregiving behaviour Sloninsky (2008) and Hall et al. (2014) illustrate the topic of opportunities further by reporting on the interactive abilities of mobile phones, for instance, calling a healthcare professional or another caregiver needing support or advice, or inquiring about assistance by sending an SMS and receiving a response through either an SMS or MMS (Bakker et al., 2016). This may sometimes involve an effortless action when the end-user receives motivational images or healthcare messages (Mwantimwa, 2019; Klasnja & Pratt, 2012) and does not physically have to visit a clinic. Understanding the value of mobile phone opportunities in healthcare adds weight to the argument that caregivers will benefit from mHealth technology, even if they only have basic mobile phones, that can only send and receive instant informational messages. A brief discussion on messaging services, call services, and mobile applications will follow. 85 3.5.2 Messaging services One of the mobile phone functions widely used for mHealth is transferring and exchanging messages through either text or multimedia. SMS, popularly referred to as texting or text messages, involves sending a text-only message to an individual or multiple people, whereas MMS incorporates multimedia, such as text messages, pictures, video clips and audio to individuals or groups. SMS offers instant messages that are asynchronous and inexpensive. Asynchronously messages are read or replied to at a convenient time. MMS can be a little pricier, because of data costs and usage of multimedia content (Eren & Gökalp, 2018; Abroms et al., 2012; Norris et al., 2013; Fjeldsoe et al., 2012; Vodopivec-Jamsek et al., 2012; Le Bodic, 2005). Both messaging services present opportunities for healthcare education dissemination to the population, or mass distribution of healthcare information in an under-resourced healthcare system (Norris et al., 2013; Abroms et al., 2012). Even for caregivers in South Africa, it is relatively uncomplicated to send and receive messages (SMS or MMS), irrespective of the geographical location and literacy level of the end-user. Text and video messages require that the user stands or sits still to view the message, while audio messages, comparatively, are more convenient, as the user may move around while listening to the message. Shorter videos are less time- consuming, while text messages are more convenient to access during network shortages. Audio messages do not excite individuals, though it is easier to use (Oksman, 2010). Time-consuming actions may predict caregivers’ willingness to use and adopt certain functionalities of mobile phones. Vashistha et al. (2016) and Abdel-Wahab and El-Masry (2010) suggest another viewpoint regarding the contextual relevance of using MMS to share information through storytelling and folk media. Video messages and calls could, furthermore, demonstrate specific behaviour or disseminate information through sight and sound and that is more interesting to the end-user (Buhi et al., 2013; Oksman, 2010) than just a text message. These video formats have the potential to enhance healthcare in resource-constrained communities by sending informational “stories” that are contextually appropriate (Vashistha et al., 2016; Chidubem, 2012). Vashista et al. 86 (2016) argue that multimedia storytelling would be even more meaningful if community members were part of the video creation. Storytelling has been part of people’s lives since the beginning of time. The format of stories varies from traditional oral storytelling, to recently, printed media, and, currently, digital formats. People are social beings, and they communicate through stories and using words (Finger et al., 2008). Text, video, and audio could be valuable vehicles for delivering stories in the digital era. Text messages are popular due to the following characteristics: they can reach the broader public, “low cost and recipient burden”, individual behaviour change can occur at any place and at any time, customisation is possible, and virtual connection allows interaction. Disadvantaged and illiterate individuals accept this way of communication (Buhi et al., 2013; Fjeldsoe et al., 2012; Vital Wave Consulting, 2009). Other attributes of SMS mentioned by Le Bodic (2005) are that customised messages can be sent to multiple recipients simultaneously and in the language of their choice. By identifying these SMS characteristics, it is possible to highlight these attributes as essential in the adoption and utilisation of such initiatives in healthcare in resource-constrained environments. An informational message that is meaningful and tailored according to caregivers’ needs, in a language that they will understand, may have the potential to address healthcare access challenges faced by caregivers. The preceding discussion drew our attention to the work of Kreuter and Wray (2003) and Hawkins et al. (2008), who defined the concepts of tailored, targeted, and mass health communication. They refer to tailoring as communicating specific health messages to an individual, while targeted communication embodies group communication based on shared similarities. Mass communication focuses on sending bulk messages to a heterogeneous population. Individual appropriation and creation of relevant communication material according to culture, personal preference, and suiting the individual define tailoring. Tailoring proves to be more difficult during mass health communication than in individual customisation. Figure 3.2 presents an adaptation of Hawkins’ visualisation of tailoring, targeted, and mass health communication. 87 High customisation Low customisation Figure 3.2: Tailoring, targeted and mass health communication Source: Adapted from Hawkins (2008) According to Kreuter et al. (1999), the “one size fits all approach of mass health communication may influence health-related decisions and behaviours”, because of the bulk production of general messages, and because it does not focus on individual situations. Rimer and Kreuter (2006) determined that health communication, tailored to individuals, culture, and beliefs, may be more worthwhile to the end-user than generic messages. This implies that tailored health messages that address individual preferences and which keep the target population (caregivers) in mind, could potentially influence their behaviour positively. Head et al. (2013) report significant results from a combination of tailored and targeted interventions. They also found that constant, fixed messages were less effective than individual messages focused on specific population characteristics, and sent occasionally. More individualised messages take precedence over tailored messages, according to Orr and King (2015), and both these approaches are more effective than sending general messages. Furthermore, they predict that two-way communication would be more beneficial than one-way communication. Messaging offers either one-way or two-way, as well as horizontal and vertical flow of communication. One-way 88 communication does not allow human interaction, whereas two-way communication creates interaction between the sender and receiver (Eliasson & Olsson, 2018; Källander et al., 2013; Dèglise et al., 2012; Källander, 2010). “Multiway communication can vary the number of senders and receivers, including 1-to-many, many-to-1, and many-to-many communication” (Källander et al., 2013). Figure 3.3 explains various types of communication formats, as interpreted visually by the researcher. Vertical flow of communication occurs when there is a top-down approach with little participation from the receiver, while horizontal communication allows feedback and responses between parties (Chapman & Slaymaker, 2002). Two-way communication exchanges knowledge, information, or support (Savolainen, 2017) and could occur between individuals or healthcare providers, between healthcare providers and public citizens, or between peer supporters (Vodopivec- Jamsek et al., 2012). Such participatory interaction is meant to, remotely, give either advice or health information, or to remind end-users about behavioural practices (Becerra-Fernandez & Sabherwal, 2008). SMS or MMS allows either one-way or two-way communication. One-to-one One-to-many Many-to-many Figure 3.3: Communication formats Messaging is an effective means of sending messages to and receiving messages from large numbers of users, either unidirectionally or bidirectionally. Some other features worth mentioning are that users can choose the message format, and can send and receive messages according to their phone type, they can ask questions, messages can be delivered, even if phones are switched off or have a flat battery, and do not need fast Internet connections or daily electricity (Ames et al., 2019; 89 Berrouiguet et al., 2016; Dèglise et al., 2012). Understanding these features is important and needs to be considered when planning mHealth initiatives for caregivers as the target population, especially in resource-constrained environments. Several studies have investigated the feasibility of SMS or MMS interventions.  For instance, Zurovac et al. (2013) found that caregivers in Kenya, where 30% of the population lives below the poverty line, selected to use text messaging (SMS).  In another study, by Chu et al. (2019), parents of adolescents received daily text messages (SMS) to promote their competence and mental health literacy. They reported improved levels of parents’ competence, knowledge to seek help, and parent/adolescent communication, with lower stress levels. Three other studies focused more on maternal care.  Firstly, two tailored voice messages (MMS) were delivered weekly to low- income expectant or new mothers in Bangladesh. This intervention resulted in increased knowledge and positive behaviour by these participants (Chowdhury et al., 2019).  Secondly, pregnant women in slum areas in Mumbai received tailored educational voice messages twice weekly in the participants’ preferred language. Their outcomes proved to be increased knowledge regarding parental practices (Murthy et al., 2019).  In the third study, respondents in rural Malawi (including pregnant or childbearing women and caregivers of young children) could call a toll-free hotline to receive information, advice, tips, and reminders via voice or SMS messages weekly. They concluded that SMS is the preferred method to deliver health information, and respondents were satisfied with the intervention. Furthermore, respondents changed or intended to change behaviour after they received messages and reported that they had acquired new information (Crawford et al., 2014). Although the abovementioned studies used different target populations, it still sheds light on the value of SMS and MMS for populations who share similar demographic profiles with the current study population. 90 This discussion adds weight to the attractiveness of messaging as a promising avenue for healthcare delivery. Recognising this attraction may lead the way in delivering healthcare to caregivers through personal communication. This personal connection allows human interaction on some level, either through receiving a written message, listening to a voice message, or calling someone (Hall & Bierman, 2015; Kim & Lee, 2014; Klasnja & Pratt, 2012). 3.5.3 Call services Being wireless, mobile phones, differ from fixed landline telephones, in that mobile phones can send and receive calls independent of the individual’s location. Synchronous communication commonly occurs when two individuals converse simultaneously during the bi-directional call process. A caller can quickly connect to another individual, even in developing countries, where there is high mobile phone penetration (As-Saber & Hossain, 2019; Scolari et al., 2012; Coiera, 2003; Le Bodic, 2005) Two types of voice call services are available. Firstly, there is the typical call between two mobile phone users, as well as the conference call, between three or more people. Secondly, there is interactive voice response (IVR), which is an automated, computer-based service (with or without toll-free numbers). An automated call system does not involve human input, but can connect a caller to either a human or machine operator, or can play some information (Posadzki et al., 2016; Woodard et al., 2014). An IVR system supplies automated prerecorded information from which the user can select the key offered to choose the relevant topic (Kassavou & Sutton, 2018; DeSouza et al., 2014). IVR platforms have multiple navigation features to interact with callers or prompt callers to engage in recorded interactive dialogues, either through voice input or phone keypad selection (Kassavou & Sutton, 2018). mHealth can be delivered through mobile telephony (Qiang et al., 2011), whereby “even a simple one-to-one telephone call may be effective in helping the caregiver as a client” (Reinhard, 2016), and “cellular phone networks could be used to deliver call center services” (As-Saber & Hossain, 2019). These mobile phone services include 91 personal calls between caregivers and healthcare professionals that facilitate verbal communication (Corry et al., 2017), or through an IVR system (Vodopivec-Jamsek et al., 2012). Public health services and healthcare facilities have been using IVR for several years, especially in illiterate populations with limited Internet connectivity (Gilroy et al., 2015; Thakore, 2014). IVR technology that offers education and behaviour change communication through mobile healthcare delivery (Tsoli et al., 2018; Labrique et al., 2013) is appropriate in resource-constrained environments, where smartphones are not available (Labrique et al., 2013). Healthcare delivery through either personal communication or automated platforms such as IVR (Vodopivec- Jamsek et al., 2012) is beneficial:  In Ghana, caregivers of sick children could access an IVR helpline and seek help based on disease symptoms (Brinkel, Dako-Gyeke, et al., 2017), and receive tailored feedback.  Caregivers in a study by Mahoney et al. (2003) were exposed to an IVR intervention that delivered information about stress monitoring and counselling through weekly conversations. The IVR system was operated by a computerised human voice provided by a radio presenter known in the community.  Aponjon, an IVR system used by pregnant women or new mothers in Bangladesh, resulted in increased knowledge, improved practices, and positive behaviours in this population (Chowdhury et al., 2019; Istepanian & Woodward, 2017).  Some other views related to the importance of IVR voice services are gender preferences for the voice used (Shet et al., 2014), voice tone, that is, whether it is friendly, encouraging, motivated, courteous, respectful, and cheerful (Ames et al., 2019), and a reassuring tone of recorded voice (Murthy et al., 2019). A more natural conversation is sometimes preferred over an automated voice delivering pre-recorded content. Mobile phones offer communication through various 92 formats, including more personalised ways, such as calling a healthcare professional for support. 3.5.4 Helplines An additional pathway to delivering healthcare could take the form of communication helplines that provide information services to the caller. It is preferable that callers access the helpline from their own homes, and on their terms. This creates a comfortable milieu in which they can confidentially ask for information and advice in the safety of their homes. Phoning is less time-consuming than a personal visit because the caller does not have to travel to obtain help. Helplines provide support to caregivers through an actual conversation with a healthcare professional who offers assistance and conveys the feeling of being cared for (DeSouza et al., 2014; Howe et al., 2014; Chavan et al., 2012). A nurse usually operates helplines and receives more inbound calls than making outbound calls. The helpline can successfully deliver healthcare information, do consultations, prevent disease, and educate people according to the needs of the caller (Kaminsky, 2013; Nauright et al., 1999) by using mHealth technology. Due to high mobile phone penetration, a helpline call service could reach large populations in hard-to-reach geographical areas with poor healthcare access (Ivatury et al., 2009). Limited human healthcare resources, transportation shortcomings, and unskilled caregivers in LMICs could benefit from helpline call services (WHO, 2018a; 2018b; Earth Institute, 2010). Helplines should be accessible when other healthcare services in the community are closed. Helpline staff members should keep callers’ culture, religion, and socio- economic status in mind when assisting individuals (Woodward & Wyllie, 2016). Helplines could limit stigma and maintain confidentiality in mental healthcare (Chavan et al., 2012). Delponte et al. (2015) reviewed literature related to ITC in the developing world that found helplines and toll-free services to be reliable interventions in LMICs. Some examples of such initiatives are the following:  Project Masiluleke’s “Please Call Me” initiative in the fight against HIV/AIDS and tuberculosis in South Africa connected users to government helpline 93 centres so that they could obtain information that was culturally relevant, in several local languages (UNICEF, 2017).  Chipatala Cha Pa Foni (CCPF) is a toll-free helpline that offers pregnant and childbearing women and caregivers of young children health information, advice, tips, and reminders via SMS messages, or users can call the toll-free helpline with a specific code (Crawford et al., 2014).  In South Africa, Deysel (2017) assessed a national non-profit organisation call centre with 13 mental health helplines that offered assistance through trained volunteers. Her findings indicate that callers required information and support and were conscious of help-seeking behaviour. As a rebuttal to this topic, some evidence seems to suggest that helplines could be demanding on resources and challenging to sustain, compared to an IVR system (DeSouza et al., 2014). High airtime costs prevented users from calling for help or from getting information, although they appreciated receiving calls from healthcare professionals that took the time to engage with them (Watkins et al., 2018). In another study, participants preferred to use voice functioning rather than text messaging (Zurovac et al., 2013), while Head et al. (2013) found that text-only interventions or with other extra functionalities, e.g., human counsellors, did not differ in effectiveness. However, a review by Ames et al. (2019) draw our attention to their finding that participants preferred full-text messages, rather than “text speak messages”, though Oksman (2010) established that calls could sometimes be heard by others nearby, while text message content could not be seen by others. SMS or MMS are valuable functions of mobile phones; though mobile applications are also worth mentioning in mHealth initiatives. 3.5.5 Mobile applications The content format of text messaging, multimedia, and interactive platforms, such as applications (apps), differs. A mobile app is software that connects the user with the content through various functions (Bendixen et al., 2017; Scolari et al., 2012). According to Scolari et al. (2012) – “applications are becoming more than just tools for doing: they are also involved in distributing contents”. In other words, apps take part in the “knowing process.” An app is user-friendly in that it does not require 94 access via an Internet browser (Woodard et al., 2014; Scolari et al., 2012) and is accepted as a practical initiative to provide healthcare (Payne et al., 2015; European Commission, 2014). Basic mobile phones consist of embedded apps, such as SMS and calendars, while smartphones can run complex apps, including WhatsApp, that can manage multifaceted healthcare (Baig et al., 2015; Woodard et al., 2014; Klasnja & Pratt, 2012). Exponential growth and diffusion have transpired in the mobile healthcare app arena (Dyer et al., 2012), especially in LMICs. A shortage of skilled healthcare professionals in these countries set the stage for mobile apps due to their accessibility and continuous availability. Mobile apps can supply essential healthcare knowledge to the user in resource-constrained areas at convenient times (Royston et al., 2015; Malvey & Slovensky, 2014; Danis et al., 2010). The potential of mobile apps in rural healthcare is enormous (Laidlaw et al., 2017; Chand et al., 2016; World Bank, 2012) for advancing healthcare and providing support, advice, information, training, reminders, interaction, decision-making, health monitoring and encouragement (Jusoh, 2017; Dennison et al., 2013; Barton, 2012; Klasnja & Pratt, 2012). A review by Dyer et al. (2012), on mobile applications to support non-professional caregivers, commonly found the following types of applications: education modules, self-care, peer-to-peer communication, and application tools to improve communication between caregiver and healthcare professional. With this in mind, caregivers should be involved when planning or designing mobile applications. Their needs ought to be the “building blocks” during the “architecture” of mHealth initiatives. Therefore, developers must consider the possible value and challenges related to mHealth apps (Becker, 2016; Schnall et al., 2016; Chan et al., 2014; Dennison et al., 2013) Figure 3.4 provides a summary of the valuable features of and challenges facing apps. 95 Figure 3.4: Apps: Valuable features and challenges It is essential to gain more in-depth insight into the value of and challenges facing applications, mainly to understand the interactive possibilities that enable the targeted population to use it. The efficient employment of the app depends on the literacy level (health and ICT) of the targeted population, in this case, caregivers, to engage with the app as well as the mobile phone itself (Corralejo & Domenech Rodríguez, 2018; Bakker et al., 2016; Qiang et al., 2011). Correspondingly, adoption of mHealth applications may help caregivers to “become better informed and proactive in help-seeking services” (Qiang et al., 2011). Jusoh (2017) states that mHealth apps should inspire end users to gain health information and achieve mental well-being through healthier behaviours. 96 mHealth applications targeting mental well-being can be advantageous, due to their effectiveness (Bakker et al., 2016), thereby making it possible for caregivers to access applicable information that can support them (Chan et al., 2014), and motivating caregivers inherently to change their behaviour to more positive behaviour after being empowered by the information they acquired (Free et al., 2013). mHealth features include various applications, namely SMS, MMS, and other software applications (Free et al., 2013) that can support end-users’ behaviour on a range of topics, from family planning to illness promotion and advice (Källander, 2010). 3.6 CHAPTER SUMMARY This comprehensive literature review offered diverse inventories for improving understanding of communication technology and related concepts. The chapter delved into knowledge domains of eHealth, mHealth, their benefits and barriers, as well as caregivers’ readiness to adopt mHealth initiatives. Information on relevant legislation added to the contextual discussion of the mHealth landscape. Features of mobile phone technology, including messaging, call services, helplines and mobile applications, were explored as promising tools that could support rural caregivers. Gaining insight into these concepts and relevant domains provided an evidence- based platform to motivate framework development for an mHealth initiative. Finding a “one size fits all” mHealth strategy will be challenging. Socio-economic diversity in different countries and regions cause different mHealth engagements. Low-income countries engage less with mHealth activities than high-income countries do. Overall, European countries participate most in mHealth activities, while African countries are the least involved. With this in mind, we should remember that some African countries still experience a lack of electricity, a great deal of poverty, high illiteracy levels, and geographical challenges, even though there is a high penetration of mobile phones (Malvey & Slovensky, 2014). Human resource and disease challenges in healthcare contribute further to poor health outcomes among the public. Indeed, it is likely that mHealth technology can support caregivers and rural communities to deliver healthcare when required (Free et al., 2013; Danis et al., 2010). 97 CHAPTER 4: INTEREST IN COMMUNICATION TECHNOLOGY BY RURAL CAREGIVERS OF ADOLESCENTS WITH MENTAL HEALTH ISSUES IN SOUTH AFRICA: THE MMOGO-METHOD® 4.1 INTRODUCTION This chapter will present an article that explores rural caregivers of adolescents with mental health issues in South Africa’s interest in communication technology, by applying the Mmogo-method®. 4.2 MANUSCRIPT DETAILS Title Interest in communication technology by rural caregivers of adolescents with mental health issues in South Africa: the Mmogo-method® Authors Ronelle Jansen and Marianne Reid Journal Issues in Mental Health Nursing (Taylor & Francis online) Journal International details Open access Peer-reviewed journal Listed as an accredited journal by the Department of Higher Education and Training (South Africa) Impact factor 0.977 (2018 Journal metrics) https://www.tandfonline.com/toc/imhn20/current Status Accepted for publication Author https://www.tandfonline.com/action/authorSubmission?show=instructions&journalCode=imhn20 guidelines 4.3 ASSOCIATED ADDENDA Addendum B (HSREC), Addendum C (Department of Health) and Addendums E refers to the information leaflets and informed consent forms used during this phase. 99 100 101 102 103 104 105 106 107 108 109 110 111 112 CHAPTER 5: CAREGIVERS OF ADOLESCENTS WITH MENTAL HEALTH ISSUES USING COMMUNICATION TECHNOLOGY: A SYSTEMATIC REVIEW 5.1 INTRODUCTION This chapter will present an article of a systematic review on the best evidence available on caregivers of adolescents with mental health issues using communication technology. 5.2 MANUSCRIPT DETAILS Title Caregivers of adolescents with mental health issues using communication technology: a systematic review Authors Ronelle Jansen and Marianne Reid Journal JMIR mHealth and uHealth Journal details Open access Peer-reviewed journal Listed as an accredited journal by the Department of Higher Education and Training (South Africa) Impact factor 4.301 (2019 Journal metrics) https://mhealth.jmir.org/ Status Accepted for publication Author guidelines https://www.jmir.org/content/author-instructions 5.3 ASSOCIATED ADDENDA The associated addenda listed here refer to the senior researchers’ references (Addendum F) and the data extraction table (Addendum G) used during the critical appraisal process. 113 114 115 116 117 118 119 120 121 122 123 124 125 126 127 128 129 CHAPTER 6: A FRAMEWORK FOR DEVELOPING AN MHEALTH INITIATIVE TO SUPPORT RURAL CAREGIVERS OF ADOLESCENTS WITH MENTAL HEALTH ISSUES 6.1 INTRODUCTION This chapter will present a manuscript that describes the framework developed for an mHealth initiative to support rural caregivers of adolescents with mental health issues. 6.2 MANUSCRIPT DETAILS Title A framework for developing an mHealth initiative to support rural caregivers of adolescents with mental health issues Authors Ronelle Jansen and Marianne Reid Journal Mass Communication and Society (Routledge Journals,Taylor & Francis Ltd) Journal International details Open access Peer-reviewed journal Listed as an accredited journal by the Department of Higher Education and Training (South Africa) Impact factor 1.792 (2019 Journal metrics) Status Under review Author https://www.tandfonline.com/action/authorSubmission?show=instructions&journalCode=hm guideline cs20 s 6.3 ASSOCIATED ADDENDA Addenda associated with Phase 3 are the information leaflets and consent forms (Addendum H). 130 A framework for developing an mHealth initiative to support rural caregivers of adolescents with mental health issues 1. Ronelle Jansen (M.Soc.Sc Nursing & M.Cur Psychiatric Nursing Science) Orcid 0000-0003-2260-7041 jansenro@ufs.ac.za (corresponding author) 2. Marianne Reid (PhD Nursing) Orcid 0000-0002-1074-1465 reidm@ufs.ac.za School of Nursing, University of the Free State, 205 Nelson Mandela Drive, Bloemfontein, South Africa 9301. Abstract Caregivers of adolescents with mental health issues shoulder a heavy caregiving burden while also facing their own unmet needs. The various unmet needs of rural caregivers necessitate supporting initiatives, and evolving mHealth initiatives may provide opportunities to support caregivers. Frameworks to inform intervention development for caregivers are lacking. This study aimed to develop a framework for an mHealth initiative to support rural caregivers of adolescents with mental health issues. A multiple method design guided framework development through a three-phase approach. Phase 1 employed a visual-based narrative inquiry to investigate interest in communication technology by rural caregivers of adolescents with mental health issues. Phase 2 included a systematic review on caregivers of adolescents with mental health issues using communication technology. Results from Phases 1 and 2 were triangulated to develop a draft framework based on the theory-of-change logic model. The draft framework was validated in collaboration with expert stakeholders involved in adolescent mental healthcare during a workshop in Phase 3. Contributions made by the expert stakeholders are outlined in the final framework. This article describes a framework for an mHealth initiative for rural caregivers of adolescents with mental health issues, constructed from evidence-based data. Keywords: Rural caregivers, adolescents, expert stakeholders, validation workshop, theory of change, framework 131 Background ‘Quietly endure, silently suffer, and patiently wait.’ Martin Luther King, Jr.1 Globally, caregivers suffer many burdens, and caregiving responsibilities at home influence their well-being (Bingham, 2017; Stacey et al., 2016). Traditionally, home care is seen as a social obligation, which is accepted by many women across the world (Berry & Malek, 2017; Larkin et al., 2019; Ruiz & Nicolás, 2018). Care recipients are individuals with various acute or long-term conditions, age-related issues, or physical and mental health issues or disabilities, and include children/adolescents living at home (Larkin et al., 2019; National Research Council, 2010; Stacey et al., 2016). In most settings, parents, grandparents, and close family members act as caregivers and are central in caring for adolescents (Berry & Malek, 2017; Gérain & Zech, 2018, 2019). Caregivers are well positioned to recognise any changes in adolescents’ behaviour (National Research Council, 2010; Toska et al., 2019) caused by challenging transitions that impact the adolescent and the family’s daily functioning (Das-Munshi et al., 2016; Dogra et al., 2002; Patton et al., 2016). Caregivers’ caregiving practices concerning adolescents are challenged by the need to distinguish between normal developmental behaviour, and presentation of mental health issues (Das-Munshi et al., 2016; Paruk & Karim, 2016). Caring for individuals with mental health issues presents caregivers with difficulties (Chadda, 2014; Chang et al., 2016; Van Pletzen & MacGregor, 2013) while caring for adolescents with mental health issues often makes caregivers feel incompetent regarding their caring responsibilities (Campelo et al., 2014; World Health Organization, 2017). Caregivers are fundamental for adolescents’ mental 1 https://www.quotetab.com/quote/by-martin-luther-king-jr/quietly-endure-silently-suffer-and-patiently- wait?source=struggle 132 health, but frequently have little understanding about adolescent behaviour, thereby creating difficulties regarding coping, and managing behaviour (Campelo et al., 2014; Valverde et al., 2012; Veldman et al., 2015). Accessibility barriers to mental healthcare services in rural areas shift the responsibility to the adolescent’s caregiver (Siceloff et al., 2017). Caregivers in rural communities experience challenges due to human and mental health resource deficiencies (Denby & Bowmer, 2013; Gamm et al., 2003) and experience isolation (Henning-Smith & Lahr, 2018). Rural caregivers have been found to lack education regarding adolescent behaviour and mental health (Choate, 2015; Michael & Jameson, 2017), they lack exposure to health promotion strategies (Campelo et al., 2014), and often feel unsupported (Choate, 2015). According to Chen et al. (2019), there is little caregiver support to address their needs, while the National Academies of Sciences, Engineering, and Medicine (2019) emphasise the importance of addressing rural caregivers’ needs. Stavrou et al. (2017) state that providing support is expected to ease caregiver burden, whereas Bastawrous (2013) confirms that, if caregivers receive adequate support, they can overcome the difficulties they experience. Unsupported caregivers may struggle with increased burdens (Mendenhall & Mount, 2011), which impacts their well-being and quality of life (Cheng et al., 2017; Talley et al., 2014). Caregivers have to look after adolescents with mental health issues, as well as their own well- being, which means they have to carry a double burden (Schor, 2003; Stacey et al., 2016; Talley et al., 2014). Rodríguez-Meirinhos et al. (2018) are of the opinion that initiatives that address caregivers' multiple needs may improve their well-being, ability to cope, and quality of life. Therefore, Brown and Brown (2014) believe that recognising the needs of caregivers may optimise initiatives that target their specific challenges. Effective caregiver support initiatives could 133 also improve the care recipient’s outcomes (Chen et al., 2019; Feinberg, 2014; Feinberg & Houser, 2012). Initiatives to improve the outcomes of the behaviour of both the caregiver and adolescent are beneficial to both parties. Lafferty et al. (2016) propose versatile initiatives that signify individual needs specific to each caregiver situation, because “one size does not fit all”. Information and communication technologies (ICTs) emerged as promising initiatives for meeting caregivers’ needs. ICTs can provide support to anyone, anywhere, and anytime (Aceto et al., 2018; Negash et al., 2018) by supplying among others information (Mothobi & Gillwald, 2018; Newman et al., 2019), connections (Newman et al., 2019; Trilar et al., 2018), and education (Källander, 2010; Källander et al., 2013; Mothobi & Gillwald, 2018), and can aid in decision-making (Avgar et al., 2012; Källander et al., 2013). mHealth (mobile health) and eHealth (electronic health) are components of digital communication technologies for healthcare (digital health) (Istepanian et al., 2003; Källander et al., 2013; Mechael et al., 2010). mHealth is widely recognised as an accessible vehicle to deliver healthcare initiatives (Källander et al., 2013; McCarthy et al., 2018) through mobile devices, such as mobile phones (Delponte et al., 2015; Marin et al., 2017), and offers solutions through various functionalities, such as text messaging (SMS), multimedia messages (MMS), mobile applications, social media networks, and the Internet (Anderson-Lewis et al., 2018; Botha & Booi, 2016; Klasnja & Pratt, 2012; Payne et al., 2015). mHealth technology has demonstrated effectiveness in developing countries, especially in rural areas that have limited resources due to staff shortages, too few clinics, and inaccessible healthcare information (Vital Wave Consulting, 2009). mHealth technology is rapidly emerging in healthcare settings, minimises the digital divide in resource-constrained areas (World Health Organization, 2018a, 2018b), and provides cost-effective caregiver support in 134 these areas, due to its promising abilities (Anderson-Lewis et al., 2018; Danis et al., 2010; Istepanian & Lacal, 2003; Klasnja & Pratt, 2012). Appealing mHealth attributes could facilitate efficient healthcare through communication, education, support, and information (Abroms et al., 2012; Goel et al., 2013), and could preserve caregivers' well-being (Frisbee, 2014; Talley et al., 2014) and coping skills (Aschbrenner et al., 2010). Nascent mHealth initiatives contribute to support caregivers’ in-home and community care (Davies & Lund, 2017; Gentles et al., 2010) during difficult times. Unique challenges facing caregivers necessitate tailored initiatives to support caregivers in suitable ways (Chi & Demiris, 2015; Tang et al., 2018), especially caregivers in rural areas (Chand et al., 2016; Laidlaw et al., 2017), who have particular support needs. Including caregivers intentionally in the development of initiatives may contribute to the success of initiatives (Wolff et al., 2016). Planning and developing caregiver mHealth initiatives should, similarly, engage relevant stakeholders (Aranda-Jan et al., 2014; L’Engle et al., 2017). Stakeholders of various healthcare settings can add value to the effectiveness and usefulness of mHealth initiatives (Franz-Vasdeki et al., 2015). Partnerships between relevant stakeholders and caregivers in developing mHealth initiatives could facilitate new means of support for rural caregivers, that could be potentially beneficial to both the creators (stakeholders) and the users (caregivers). Caregiver-focused initiatives that have been developed to transform caregiving practices (Bergström & Hanson, 2017; Yesufu-Udechuku et al., 2015) may improve behavioural outcomes in caregivers (Reichow et al., 2013). Initiatives for caregivers improving behavioural outcomes are unsuitable unless they are guided by a framework to define the programme activities that should be addressed by the mHealth initiative (Van Houtven et al., 2011). 135 Articulating a framework could be the starting point of initiatives (Funnell & Rogers, 2011), and could also ensure that feasibility is maximised (Yardley et al., 2015). Such a framework is needed to understand the detailed components of the initiative (Wilhide III et al., 2016) to determine caregiver outcomes. Daily caregiving should be strengthened by applicable initiatives that produce positive outcomes in caregiver behaviour. A clearly stated framework could foster desired results, such as behaviour change, including improving knowledge and attitudes, skills and intentions (Funnell & Rogers, 2011) of caregivers. The integrated model of behaviour prediction (IMBP) explains and predicts behaviour changes, which signify the individual’s intent to perform specific behaviour, influenced by attitudes, norms, and self-efficacy. Other factors that determine behaviour changes are lack of skills and environmental constraints (Admiraal et al., 2013; Fishbein & Yzer, 2003). The researchers anticipated that mHealth initiatives would encourage rural caregivers to change their behaviour and achieve positive outcomes. As a theoretical model, the IMBP offers an understanding of the factors that affect behaviour change, which could be exposed by a theory-of-change framework. Developing a framework to identify the components of the proposed initiative may contribute to more positive behaviour with possible behaviour change (Mayne, 2015). The researchers determined a need for a framework to guide the development of an mHealth initiative that attempts to support caregivers’ caregiving behaviour. To create a suitable framework, the researchers drew on empirical evidence informing framework development. The framework discussed in this article focuses on an mHealth support initiative for rural caregivers of adolescents with mental health issues. 136 Theoretical underpinning of the framework To develop the draft framework, the researchers drew on the theory-of-change logic model method (De Silva et al., 2015; W.K. Kellogg Foundation, 2004). A theory-of-change logic model consists of a series of components that conceptualise framework development, implementation, and evaluation, by explaining practically how, why and to what extent change can happen in a complex intervention (Mertens & Wilson, 2019; Serrat, 2017). A logic model displays a programme’s theory of change (Serrat, 2017) by conceptualising programme planning through a graphic description of activities (Fernandez et al., 2019; Hernandez, 2000; W.K. Kellogg Foundation, 2004), by illustrating the interactions, causal links, and pathway connections (Harries et al., 2014) towards the proposed framework. Constructing a theory-of-change logic model occurs through a consultative process with relevant stakeholders (Breuer et al., 2016; De Silva et al., 2014; W.K. Kellogg Foundation, 2004), who map out the series of framework components (De Silva et al., 2015) to deliver a product (Vogel, 2012a; World Health Organization, 2016). Presenting a draft framework in an interactive workshop will yield discussion, and verify meaning, credibility, and ownership of the initiative addressed by the framework (Knowlton & Phillips, 2013; Nielsen et al., 2017). A workshop involving various stakeholders allows the sharing of information and knowledge, brainstorming, and discussion so that participants reach consensus about developing a contextual framework (Mason & Barnes, 2007; Mayne, 2015). The theory-of- change logic model is supported by the triangulation of evidence from various research designs (Vogel, 2012b; W.K. Kellogg Foundation, 2004) used to develop the framework. Methods A multiple method design guided the development of the mHealth framework through three phases. Three separate studies are depicted as phases that inform the development of the 137 mHealth framework for rural caregivers of adolescents with mental health issues. In Phase 1, the researchers employed a visual-based narrative inquiry. In Phase 2, the researchers conducted a systematic review, and Phase 3 consisted of a validation workshop. Research process The three-phase approach ensured a cumulative and iterative process for triangulating empirical data provided by rural caregivers (Phase 1), a systematic review (Phase 2), as well as data based on the knowledge of expert stakeholders during a validation workshop (Phase 3). The methodology for developing the framework will be described next. Phase 1: Visual-based narrative inquiry Empirical data were obtained through the Mmogo-method®, through which caregivers’ interest in using communication technology was explored. The Mmogo-method® involves an indigenous focus group, which uses individual visual constructions as the baseline for group discussion. Three groups were held with rural caregivers (n=17) of adolescents with mental health issues in the Free State province of South Africa. A six-step thematic data analysis approach proposed by Clarke and Braun (2013) was followed for textual data, and visual analysis was conducted according to Roos and Redelinghuys’ (2016) six steps. Meanings and contextual sensitivity of the data were verified through member checking during each group discussion. The thematic analysis depicted four themes and relevant subthemes. Caregivers faced various challenges: They mentioned a need for psychosocial support and social resources, and that they faced informational challenges related to communication technology. Caregivers preferred using SMS and phone calls, and computers as supportive platforms, to access information (Jansen & Reid, 2020b). 138 Phase 2: Systematic review The researchers undertook a systematic review of the best evidence of ways communication technology could strengthen positive behaviour of caregivers of adolescents with mental health issues. Of an initial 1 746 articles, five met the eligibility criteria and were included in the data synthesis. The applicable Critical Appraisal Skills Programme (CASP, 2014) and Joanna Briggs Institute assessment tools (Godfrey & Harrison, 2015) were used to evaluate the quality of the selected articles. Thematic data analysis was done to summarise the thematic conclusions. The three thematic conclusions were that caregivers (particularly parents and family members), as the target population, experienced improved IMBP determinants (self-efficacy, knowledge, parent/child communication, parental skills), which reflects a positive effect on caregiving behaviour by using various types of communication technologies (SMS, emails, phone calls, online communication, social media) (Jansen & Reid, 2020a). Development of the draft framework The authors synthesised the results obtained from Phases 1 and 2 of the study to develop the draft framework for caregivers of adolescents with mental health issues. Triangulation of data culminated in conclusions that were used as foundation for the draft framework, which was presented during the validation workshop in Phase 3. The draft framework was structured according to the theory-of-change logic model. Phase 3: Validation of framework Nine stakeholders were purposively invited to participate in the one-day workshop to validate the draft framework. The stakeholders were experts in adolescent care and were in a position to influence mental health policy development. The group consisted of various DoH 139 representatives, such as the senior mental healthcare manager, professional nurse researcher, chief occupational therapist, assistant director physiotherapist, social worker, DoH head psychiatrist, DoH network administrator and, from the academia; the community-based coordinator, as well as a religious youth minister. All these stakeholders provided written informed consent. Data from Phases 1 and 2 were discussed with expert stakeholders, and the layout of the theory-of-change logic model was explained to them. Author 2 facilitated validation of the draft framework through a forward and backward mapping process, which enabled clarification and consensus of components in the framework. Figure 1 depicts contributions to the draft framework. Expert stakeholders accepted the completed framework as a true reflection of discussions. Theory-of-change logic model components reflected in the framework A theory-of-change logic model consists of the following components: the problem the programme wants to solve, the community needs or assets related to the problem, desired results or vision for the future, factors that may influence programme changes, reporting on best evidence used in similar communities, and underlying assumptions regarding whether the programme will work (Breuer et al., 2016; Clarke & Braun, 2013; Harries et al., 2014). The theory-of-change logic model guided the framework of mHealth initiatives to support caregivers of adolescents with mental health issues (the programme) that was developed, and the components of the validated framework reflect those of the theory-of-change logic model. Underlying assumptions convey if a programme is likely to work (McLaughlin & Jordan, 2015; Mertens & Wilson, 2019) in a theory-of-change framework (Child et al., 2015). The authors assumed that an mHealth initiative would, indeed, support rural caregivers of adolescents with mental health issues. Another assumption was that the involvement of the 140 Department of Health is essential in the success of such a framework; the Department would either establish a new mHealth initiative for rural caregivers or integrate with existing mHealth initiatives in healthcare. The problem or issue the framework intends to solve (McLaughlin & Jordan, 2015; W.K. Kellogg Foundation, 2004) should be clearly defined (Rogers, 2014). The reported framework’s problem was that rural caregivers experience inadequate support when caring for adolescents with mental health issues. During the validation workshop, the expert stakeholders agreed on the problem statement that had been identified. Community needs relate to what needs experienced by the community led to the framework development elicited by the problem (Mertens & Wilson, 2019; W.K. Kellogg Foundation, 2004). Community, in this framework, refers to caregivers of adolescents with mental health issues. Expert stakeholders expanded on community needs identified from the empirical evidence, and these needs are presented in the framework (see Figure 1). Desired results, including outputs, outcomes, and impact, should be clearly stated when a theory-of-change framework is structured (Knowlton & Phillips, 2013; W.K. Kellogg Foundation, 2004). Changes in the target population’s behaviour, skills, knowledge, attitudes, and self-efficacy are some of the outcomes intended by a framework (Mertens & Wilson, 2019). These intended results offer a vision of the framework’s future or changes that are expected to occur in the community (McLaughlin & Jordan, 2015; W.K. Kellogg Foundation, 2004). In addition to the list on the draft framework, expert stakeholders envisioned five additional outcomes to be achieved if strategies are implemented (refer to Figure 1, which shows the supplements). Influential factors refer to factors that can either facilitate or obstruct change in the community after implementing the framework (Ebenso et al., 2019; Mertens & Wilson, 2019; 141 W.K. Kellogg Foundation, 2004). A broad list of possible support and barrier factors affecting the mHealth initiative was identified through empirical evidence, which was confirmed by stakeholders. Evidence-based strategies portray the actions needed to accomplish the desired results (Mertens & Wilson, 2019; W.K. Kellogg Foundation, 2004). The expert stakeholders were, in general, satisfied with the strategies mentioned, but decided to add a strategy. See Figure 1 for the additional strategy. This validation of the framework ensured its’ credibility strengthening the development thereof. Methodological integrity Methodological integrity is central to determining the quality and legitimation of activities undertaken during the research process (Frels et al., 2015; Onwuegbuzie & Collins, 2007). Teddlie and Tashakkori (2009) suggest inference quality as a concept for appraising mixed methods research studies for quality. Inference quality requires processes to determine internal validity, trustworthiness and credibility in mixed methods research. Inference quality relies on two components, design quality and interpretive rigor, to ensure research integrity. Design quality represents methodological integrity, and interpretive rigor refers to credibility in the interpretation of results and conclusions (Onwuegbuzie et al., 2011; Teddlie & Tashakkori, 2009). The researchers used appropriate designs (design quality) applicable to each phase’s objective, data collection, and data analyses, by capturing meaningful conclusions that enhance the quality of the research process (interpretive rigor). The quality of a draft framework can be assessed according to a checklist recommended by the W.K. Kellogg Foundation (2004) to determine whether the stakeholders understand the Theory-of- change’s model’s logical flow (Newcomer et al., 2015), which alternates through a forward 142 and backward mapping process (Hoppe, 2018). A hard copy of the framework was sent to the workshop experts for final verification, to ensure data authenticity. Results A framework, which was developed for an mHealth initiative to support caregivers of adolescents with mental health issues, was accepted after consultation and validation with stakeholders. This framework illustrates the theoretically produced components of the phased approach, as well as stakeholder contributions. Figure 1 presents the final framework.2 Figure 1: An mHealth communication framework for rural caregivers of adolescents with mental health issues 2•Reflects the contributions of the draft framework presented to expert stakeholders. 143 Discussion This article reports on the processes related to the framework development towards an mHealth initiative to support rural caregivers of adolescents with mental health issues. A framework could optimise the effectiveness of caregiver programmes, enhancing both caregivers and care recipients' outcomes (Van Houtven et al., 2011). Positive outcomes are related to the impact of the initiative on caregivers’ behaviour. A change in caregivers’ behaviour, for example, knowledge, skills and attitude, could be a result of the initiative’s effectiveness (Mertens & Wilson, 2019). Frameworks may portray a more intricate understanding of the program planning, goals, inputs, actions, outcomes, and underlying change impacting the process of implementation (Ebenso et al., 2019; Issel & Wells, 2018). Such a framework illustrates the pathways to change (Dhillon & Vaca, 2018; Ghate, 2018) that are central to programme implementation, by explaining how components collectively contribute to achieving the intended results (Bartholomew & Mullen, 2011; Clapham et al., 2017; Mertens & Wilson, 2019). A theory- driven approach informed the development of the framework in this research study. All findings jointly captured empirical evidence reflecting the need for a framework towards an mHealth initiative to support caregivers. This need drove the authors to approach expert stakeholders to participate in a validation workshop for enriching the developmental process. Knowledge exchange between stakeholders with practical expertise and researchers with theoretical expertise could produce a plausible programme (De Silva et al., 2015). The participatory nature of the workshop generated an opportunity for expert stakeholders to engage in an open dialogue to contextualise the framework. Expert stakeholders’ unique contribution confirmed the merit of the content quality of the framework. Active involvement 144 of expert stakeholders during framework development may ensure their buy-in (Breuer et al., 2014; Mason & Barnes, 2007) when the mHealth initiative needs to be implemented. Consensus building among stakeholders and researchers supports a collaborative approach (Aromatario et al., 2019; Clapham et al., 2017), thereby adding meaning to the framework. However, De Silva et al. (2015) claim that stakeholders' ‘ownership’ of the framework might be jeopardised, since researchers created the framework. The discussion will highlight the contributions to the framework that were made by the stakeholders after consensual agreements during the workshop. Stakeholders were identified and selected due to their expertise, knowledge, and practical experience in family, child, and adolescent mental health settings. Due to their familiarity with working in these settings, the stakeholders shared a mutual concern about caregivers experiencing inadequate support in rural communities. Producing empirical evidence is fundamental to analysing and identifying the problem of a framework that needs to be solved (Aromatario et al., 2019; Davidoff et al., 2015; Ghate, 2018; Mertens & Wilson, 2019), as was the case in the reported study. Confirmation of inadequate support initiatives for rural caregivers was the driving force behind framework development. Tilahun et al. (2016) and Talley et al. (2014) confirm the urgency of developing initiatives to support families and children with mental health issues in resource-constrained communities, which should address their unmet needs. Likewise, the nature of the caregiver support initiative may be influenced by the care recipient’s condition (Van Houtven et al., 2011). Caregivers experience many challenges when caring for adolescents with mental health issues, and in regard to which they require support (Ae-Ngibise et al., 2015; Leventhal, 2018; National Academies of Sciences, 145 Engineering, and Medicine, 2019). Caregivers’ needs listed on the draft framework were psychosocial, emotional, informational, educational, training, need for role clarification, need for coping strategies, need assistance in family relationships and guidance regarding the adolescent’s future. The expert stakeholders decided that the adjective continuous should be added to emotional, informational, educational, and training support when caring for adolescents with mental health issues. Continuous support produces constant change, along with learning (Doubt et al., 2018), and endorses positive results (National Academies of Sciences, Engineering, and Medicine, 2018). It seems reasonable to provide more sustainable support rather than a solitary exercise to address caregivers’ needs. Wodehouse and McGill (2009) reports that families value continuous support that is dependable. Stakeholders also expanded on coping strategies by adding self-knowledge/awareness to the different coping skills. Chadda (2014) identified the need for healthy coping skills among family caregivers, and Cavaleri et al. (2011) confirm that caregivers of children at risk of emotional or behavioural problems should be supported with coping skills. Initially, if the programme is going to be implemented, it is vital to understand the needs of the community and to align it with the desired results. The desired results entail the vision that developers have in mind for the community, as the beneficiaries of the initiative. Expected behaviour or practice changes by the beneficiaries should arise as a result of the initiative implementation (Ghate, 2018; Ghate & Moran, 2013; Hayes et al., 2011; W.K. Kellogg Foundation, 2004). All the expert stakeholders noted a lack and need of peer support by caregivers, as well as a shortage of mentoring programmes. They recommended to ‘establish mentor and peer support programmes among caregivers’, raising an important issue that is well documented 146 in the literature. Caregivers who have higher demands, who care for recipients with challenging conditions, and who have access to minimal resources, are in dire need of support (Fernandes & Angelo, 2016; Friedman et al., 2018; Huus et al., 2017). Furthermore, inadequate support for families who care for adolescents with mental health issues is detrimental to those families (National Academies of Sciences, Engineering, and Medicine, 2016). Lauckner and Hutch (2016) list further challenges in rural communities, namely, social isolation, deficient communication and information, and lack of social support. Such challenges force caregivers to join informal support structures that may not be able to give adequate support; hence, the need to collaborate with healthcare professionals to offer adequate support to caregivers (Diehl et al., 2010). Hilty et al. (2015; 2017) propose using mHealth technology for support groups or joining a support ‘community’. Such groups aim to provide peer support by exchanging answers, tips, knowledge, or perspectives. Social support is an amalgamation of inspiration, collaboration, and guidance among peers, made possible through mHealth technology (De la Pena & Amezcua, 2017). A sense of belonging is created through group participation and sharing information on coping skills. However, the quality of the information shared could be questionable. Mentors, due to their own experiences in caregiving, may assist in supporting and advocating for other caregivers. They could deliver training, resources, referral requirements, and lead support groups for caregivers (Horn, 2010). Abbott et al. (2019) define peer mentors as individuals who share similar encounters or programmes. These mentors provide emotional support and build capacity through building trusting relationships. Online support groups 147 could help to connect caregivers with peers or mentors who share similar circumstances, such as isolation or challenges related to a care recipient’s behaviour. Behaviour change could be optimal if ongoing peer or professional support follows the initial programme (Butler et al., 2019). mHealth technology can address the challenges experienced by caregivers, by supporting them through the provision of social support (Friedman et al., 2018), thereby improving their well-being by being motivated by peers (Dombestein et al., 2019). Building social support through mHealth initiatives for rural caregivers may promote positive attitudes and relationships with healthcare professionals working in primary care (Duppong-Hurley et al., 2016; Kutash et al., 2013). The general feeling of the workshop participants that mental healthcare in primary healthcare should be scaled up vigorously by ‘re-emphasising primary mental healthcare services’. After the advent of democracy in 1994, South Africa attempted to improve the primary care infrastructure by adopting a National Health Insurance Plan (Department of Health, 2015, 2016). This model aimed to provide universal care that was free to all citizens using public healthcare clinics in communities (Bresick et al., 2019; Dookie & Singh, 2012). Primary healthcare serves as the initial entry of healthcare into communities and it should, therefore, incorporate a comprehensive model of healthcare (Shidhaye et al., 2016), including mental health. Integrating mental health into primary healthcare is fundamental to managing individuals holistically. Developing collaboration between and raising awareness in policymakers working to build capacity are ways suggested to strengthen mental health systems (Hanlon et al., 2018). Wakida et al. (2018) identified vital components that necessary for integrating mental health into primary healthcare. These components, namely, suitability and reliability of the 148 programme, knowledge and skills, motivation to change, leadership and management, and financial resources, could act as barriers or facilitators in the implementation of mental health into primary healthcare. The World Health Organization and UNICEF (2018) released the Astana Declaration on Primary Health Care after global consultation with experts from World Health Organization member states. The rationale for this declaration was based on A Vision for Primary Health Care in the 21st Century. This vision document provides insight into how primary healthcare can commit to health and well-being for all by capitalising on new technologies, resources, partnerships, and opportunities. The authors optimistically brought key expert stakeholders together to be mobilised as partners in the healthcare sector, to collaborate and possibly steer programme implementation. Stakeholder partnerships are a resourceful way to share knowledge and expertise (UNICEF, 2019) and identifying solutions for integrating mental healthcare into primary healthcare (V. Patel et al., 2016). Docrat et al. (2019) reflect on mental health resources that are unevenly allocated and insufficiently used across South Africa, which contributes to inadequate mental healthcare (V. Patel et al., 2018). Improved access to mental healthcare could be achieved by investing in primary and community-based integration of mental health, thereby complying with global recommendations (Docrat et al., 2019), as well as recommendations to include mental health in the Sustainable Development Goals (United Nations, 2016). It is imperative to integrate mental health in primary care delivery that encompasses appropriate resourcing, sufficient governance, effective policies, healthcare delivery via technologies (Shidhaye et al., 2016), and political will (Hyman et al., 2016), to ensure intended health outcomes. 149 Expert stakeholders further discerned that ‘mHealth initiatives should be integrated into the current mental health services’ offered in primary healthcare. mHealth has opened new frontiers, by offering innovative healthcare delivery by empowering consumers (Hategan et al., 2019; Hilty et al., 2017; 2015) through various applications, such as prevention, observation, treatment, and support (Malvey & Slovensky, 2014). However, mHealth interventions should not replace customary primary care services, but only be used as a supplementary tool (V. Patel et al., 2018). Mobile technologies can influence individual, community, and population healthcare practices and ensure improved health behaviour (Hall & Bierman, 2015; Kahn et al., 2010), including mental health outcomes. mHealth showed promise in transforming healthcare by employing a mobile device (Avgar et al., 2012; Istepanian & Woodward, 2017). The exponential evolution of mobile phones in low and middle-income countries harnessed promising solutions for healthcare delivery (Ellery & Ellery, 2012; Källander et al., 2013; Marin et al., 2017), information delivery (Danis et al., 2010; Delponte et al., 2015), health prevention and support (Malvey & Slovensky, 2014), behaviour change communication (Labrique et al., 2013), health education (Free et al., 2013) and training (Kumar et al., 2013) to the end user. Naslund et al. (2017) describe technology usage in mental healthcare through mHealth in resource-constrained areas as involving diagnosing, screening, managing, preventing, training of, and promoting self-management by individuals. mHealth functionalities may link to services provided in primary healthcare clinics. Changes in mental healthcare could likely be achieved through mHealth technology (V. Patel et al., 2018). South Africa published The National Digital Health Strategy for 2019 – 2024 to establish structures, platforms, broadband networks, and information systems to strengthen digital health in conjunction with 150 various stakeholders (Department of Health, 2019b). Intensifying efforts to incorporate mHealth technology in mental healthcare delivery should be a focus of relevant stakeholders, governance, and policymakers. In South Africa, The Ideal Clinic Initiative was launched to tackle shortcomings influencing quality in primary healthcare services. One feature of this initiative is to provide adequate information and communication infrastructure, hardware, and Internet access (Department of Health, 2018). The expert stakeholders said there is no need to ‘reinvent the wheel’ for developing a new initiative if one can ‘build on and link to existing mHealth projects (e.g., MomConnect)’, which is currently being implemented in primary healthcare by the Department of Health. Making use of existing infrastructure and available resources can strengthen the proposed mHealth initiative framework for rural caregivers. Khatun et al. (2016) identified a number of problems affecting mHealth usage in the community. One such problem is that the community is not knowledgeable about mHealth services. Stakeholders, in this case, were aware of mHealth services and discussed two exemplary projects currently utilised by the Department of Health, namely, MomConnect and Project Masiluleki. MomConnect is a mobile messaging service that supports maternal health through mobile phones and interaction with a helpdesk. It enables pregnant women or mothers of infants to receive free informational messages in all 11 official South African languages (LeFevre et al., 2018; Xiong et al., 2018). Education regarding accessible prenatal and postnatal services was offered, and provisions were made to give feedback (Department of Health, 2019b). MomConnect, as a flagship Department of Health programme, could be extended to other user groups, types of conditions, and management as well as healthcare professionals. Piggybacking on a successful project like MomConnect may be worthwhile to 151 consider. Efficient Department of Health leadership facilitated the MomConnect process, in collaboration with skilled content and technology developers (Barron et al., 2018). Onother landmark in South Africa is Project Masiluleki – meaning ‘lend a helping hand’ in isiZulu – which provides opportunities to change behaviour. This project focuses on encouraging individuals to test for HIV and tuberculosis, and to take their medication. It is a ‘Please call me’ initiative, whereby callers connect with a government-operated helpline to receive culturally relevant information in several local languages (Källander, 2010; PopTech, 2011) The expert stakeholders perceived these distinguishing projects to be strong points of reference that could guide the implementation of the current framework. Expert stakeholders elaborated further on the desire ‘to establish Wi-Fi access’, and raised valuable concerns related to connectivity that may influence the implementation of the framework initiative. According to the National Digital Health Strategy of South Africa (Department of Health, 2019b), it is important to evaluate information systems across the health sector to determine functionality and connectivity and, moreover, to resolve any connectivity barriers impeding steps taken by South Africa to digital health operationalisation. Issuing guidelines for broadband infrastructure distribution in South Africa have been delayed (Gillwald et al., 2018). Network connectivity is a real concern in developing countries, and impacts future mHealth initiative implementation (Istepanian & Woodward, 2017). Less than half of South Africa’s rural population has Internet connection, suggesting digital inequality between rural and urban residents. Internet connectivity is impacted by the income of the users (Gillwald et al., 2018). In the least developed countries, only 15% of homes have Internet connections (ITU, 2017). The World Health Organization (2019) recommends that systems should be created to 152 ensure connectivity infrastructures. South Africa’s mHealth strategy (Department of Health, 2019a) aims to provide ICT platforms and network connections at primary healthcare clinics. Inadequate income, poor infrastructure, and deficient Internet connectivity will play a role in the implementation of the framework. These determinants should be kept in mind when deciding on the strategy chosen for the framework, as it was also mentioned under influential factors as barriers to change. Naslund (2017) argues that improving connectivity could resolve the healthcare gap in remote areas. The link between influential factors (barriers and support) and proposed strategies is acknowledged in the framework. The expert stakeholders identified one more strategy they believe will help achieve the desired results discussed. Strategies are identified and chosen on the assumption that behaviour change will occur (Knowlton & Phillips, 2013). The authors provide evidence- based strategies that were identified from literature that had studied populations similar to that of the current research. The strategies that were selected for the framework aim to support caregivers during caregiving, and anticipates behaviour change as the intended impact of the research study. Overall, the expert stakeholders agreed about the selected strategies (SMS, MMS, and call services), but suggested including mobile applications as a fourth strategy for supporting rural caregivers. Mobile applications can be used to disseminate content (Scolari et al., 2012) and to provide support (Källander et al., 2013). SMS and calendar applications are embedded in basic mobile phones, while WhatsApp demonstrates a more complex application that runs on smartphones (Baig et al., 2015; Klasnja & Pratt, 2012). The possibilities of mobile applications in rural healthcare are prodigious (Chand et al., 2016; Laidlaw et al., 2017), and exhibit improved healthcare delivery through various mobile 153 channels (Free et al., 2013). Botha and Booi (2016) reviewed current mHealth applications implemented in South Africa. They found most apps supplied educational information for the general public with the aim of promoting behaviour change. One of the challenges experienced in South Africa regarding mHealth projects is a lack of practical approaches, frameworks, and interoperability (Department of Health, 2019a). Improving broadband access and Internet connectivity may improve the use of mHealth initiatives in rural areas (Betjeman et al., 2013). Scaling up mHealth initiatives should be a focus of governance, leadership and legislation, among others, and stakeholder involvement could ameliorate the infrastructure in rural areas (Department of Health, 2019b). If people have mHealth and mobile phones at their disposal, rural populations have opportunities to access support (Chan et al., 2014). Initiatives offering support have the potential to relieve caregivers’ burden and improve their well-being (Fernandes & Angelo, 2016; Talley et al., 2014). It is, therefore, crucial to develop support initiatives that are appropriate to caregivers’ individual needs (Chang et al., 2016). The framework visualises a roadmap to achieve the planned mHealth, by explaining causal relationships between all the components. The theory of change was considered to be an essential building block for drafting the framework and developing an mHealth initiative that supports rural caregivers. Strengths and limitations Specific strengths of the study are worth noting. A combination of empirical evidence, the theoretical foundation of framework planning, active engagement, and consensus among expert stakeholders ensured the methodological rigor of the study. Consensus by multiple stakeholders during the validation workshop ensured plausible confirmation of research 154 procedures –stakeholders agreed on the conclusions drawn by the researchers. Formation of stakeholder partnerships during the workshop reflected future collaboration in the implementation of the framework initiative. Another strength of this study is that, due to stakeholder participation, the framework could be incorporated into the communication component of The Ideal Clinic initiative being driven by the Department of Health. The authors acknowledge that not all stakeholders were familiar with the methodology of the study. However, interactive discussions limited possible interpretation errors of the framework. Since the framework focused on a specific rural area in South Africa, generalisability is limited. Conclusion The proposed framework is constructed from integrated, evidence-based data characterizing the distinctive theory-of-change components logically. Transparency in the development process constitutes a believable approach to how the framework could support rural caregivers through an MHealth initiative. One should understand how the framework activities are expected to bring about the desired results for rural caregivers of adolescents with mental health issues. A successful framework is determined by the intended results secured by the chosen strategies (Knowlton & Phillips, 2013; W.K. Kellogg Foundation, 2004). “Knowing where you are headed is critical to picking the best route to use” (Knowlton & Phillips, 2013). This quote explains the vision of the researchers for the current framework. Realising this vision is not possible without collaboration and partnerships between academia, healthcare professionals, and government officials. Collaboration has the potential to guarantee the successful implementation of the framework for supporting a vulnerable 155 population. Extending healthcare from conventional services to digital platforms may leverage opportunities to transform healthcare delivery. Providing healthcare access to all, including populations in remote areas, fits in well within the re-engineering of primary healthcare services, as well as The Ideal Clinic objectives. Neither should we forget about the role non-profit organisations, corporate businesses and religious associations could play in supporting rural caregivers. Rural caregivers must have access to ongoing support initiatives that meet their specific needs. Due to high mobile phone penetration among resource-constrained populations, mHealth may be the ideal solution for meeting caregivers’ unmet needs. Support initiatives that are provided through mobile technology offers a vehicle to deliver targeted healthcare solutions to caregivers. Boosting caregivers’ well-being through targeted support initiatives will be a key determinant in changing caregiver behaviour positively. A change in caregiver behaviour may lead to improved adolescent mental health outcomes. Using a supportive mHealth initiative may strengthen caregivers’ behaviour and influence their caregiving practices positively, which would reflect in improved mental health outcomes for adolescents. Abbreviations eHealth – electronic health ICT – information and communication technology IMBP – Integrated Model of Behaviour Prediction mHealth – mobile health MMS – multimedia messaging SMS – short message service 156 Acknowledgments The authors would like to thank all the participants of Phase 1 and the stakeholders from Phase 3 who agreed to participate in the research. Authors’ contributions RJ performed the data analysis and data integration, and prepared the draft framework. MR facilitated the validation workshop and provided key methodological expertise for the process. RJ drafted the manuscript. MR revised the manuscript critically and approved the final framework. 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Interventions to improve the experience of caring for people with severe mental illness: systematic review and meta-analysis. The British Journal of Psychiatry: The Journal of Mental Science, 206(4), 268–274. https://doi.org/10.1192/bjp.bp.114.147561 176 CHAPTER 7: CONCLUSIONS AND IMPLICATIONS "Our most urgent need is not for a master plan for all communities but for plans that are based on the views and needs of the people, developed with the people and subject to modification by the people." -Patrick G. Boyle8- 7.1 INTRODUCTION In this chapter, the researcher will critically reflect on the study as a whole and discuss a number of conclusions reached and their implications, based on the results of the study. Firstly, the researcher will recap the problem statement, aim, research questions, and the chosen methodology that guided the research process. Factual, interpretative, and conceptual conclusions will then be presented, as will the summary of the components in the final framework. Following that, the researcher will introduce implications for theory, practice, and future research. Lastly, the limitations of the study and contributions made by the researcher will conclude this chapter. 7.2 SUMMARY OF THE PROBLEM STATEMENT, RESEARCH QUESTIONS, AND STUDY AIM Family members are generally the primary caregivers of children and adolescents. Caring for an adolescent may be challenging, due to the typical formation of mental health issues associated with rapid transitions, and developmental problems arising during adolescence (Toska et al., 2019; Finan et al., 2018). Caring for adolescents suffering from mental health issues is burdensome to caregivers (Gérain & Zech, 2018; Dada et al., 2011); these caregivers are more prone to experience subjective and objective burdens (Gérain & Zech, 2018; Flyckt et al., 2015; Talley et al., 2014), thereby creating a situation in which various support needs are not met (Oruche et al., 2017; Talley et al., 2014). Unmet support needs could influence the caregiver and the adolescent's well-being (Brazil et al., 2014). 8 Boyle, P.G. 1981. Planning better programs. New York: McGraw Hill. 177 Even more concerning is those needs of caregivers and adolescents living in rural areas with no or limited support and access to mental healthcare services (WHO, 2017a). Rural caregivers lack support initiatives targeting their unique needs related to caring for adolescents with mental health issues (Steding, 2016). Initiatives to support caregivers are of increasing importance because of the challenges they face in their caregiving practices. Suitable initiatives may strengthen caregiver behaviour, making it more positive and improving their attitudes, norms, self-efficacy and skills (Corralejo & Rodríguez, 2018). Emergent mHealth initiatives demonstrate promising results (WHO, 2018b; Davis et al., 2016) supporting rural caregivers in resource-constrained environments (Anderson-Lewis et al., 2018; Chand et al., 2016). Involving caregivers in the planning of such initiatives is arguably a positive step forward and, thus, it is important to understand caregivers’ perspectives regarding mHealth. Another critical determinant related to planning mHealth support initiatives is developing a framework to guide the planning process (Davis et al., 2016), in order to demonstrate how caregivers’ behaviour could change. A systematic planning approach that details the activities of behaviour change may be visualised through a framework. The main aim of this study was to develop an mHealth communication framework for rural caregivers of adolescents with mental health issues in the Kopanong local municipality. The researcher sought to answer the following question: What should an mHealth communication framework that is to be used by rural caregivers of adolescents with mental health issues in the Kopanong local municipality consist of? This question was trailed by three objectives to address the aim of the study.  To explore rural caregivers’ interest in using communication technology to provide support addressing their challenges (Phase 1).  To systematically review the literature on the best evidence available to strengthen positive behaviour of caregivers of adolescents with mental health issues using communication technology (Phase 2). 178  To describe the development of an mHealth communication framework for rural caregivers of adolescents with mental health issues in the Kopanong local municipality (Phase 3). 7.3 METHODOLOGY A multiple method research design (Polit & Beck, 2018; Hunter & Brewer, 2015), rooted in pragmatism as the philosophical underpinning, was deemed appropriate for addressing the research questions. An overarching question with subsidiary questions requiring different research approaches is useful in multiple methods designs (Teddlie & Tashakkori, 2009). The researcher believed that her research question and related objectives would be answered best by using multiple methods and incorporating a pragmatic stance. As a pragmatist, the researcher actively undertook suitable data collection methods that addressed the research question. Developing an initiative to support caregivers should be based on evidence, theory, literature review, participant data, and expert stakeholder involvement (Fernandez et al., 2019) that reflects the interactions among these components (Craig et al., 2019), which characterise a complex intervention. It was best to conceptualise this study as the developmental phase of a complex intervention presented by the Medical Research Council of the United Kingdom (Craig et al., 2019). The theory-of-change logic model guided the developmental phase of the communication framework, while the IMBP conceptualised the programme to provide support to caregivers. A phased approach was thus adopted to inform the development of a complex intervention. This study harnessed a phased approach to develop an mHealth framework for caregivers of adolescents with mental health issues. Phase 1 employed a visual- based narrative inquiry to explore caregivers' interest in using communication technology when caring for adolescents with mental health issues. Phase 2 involved a systematic review that searched for the best evidence available to strengthen the positive behaviour of caregivers of adolescents with mental health issues using communication technology. Phase 3 consisted of a workshop that validated the 179 proposed framework for the development of an mHealth initiative to support caregivers of adolescents with mental health issues. The IMBP (Fishbein & Yzer, 2003) was adopted to guide the conceptualisation during each phase. Conceptualising determinants of behaviour (attitudes, perceived norms, and self-efficacy), together with skills and environmental constraints, described the influence on caregivers' behaviour. The IMBP also served as a foundation to improve understanding of the intention-behaviour relationship relating to whether caregivers would be likely to engage with mHealth communication technology, consequently, influencing their caregiving behaviour positively if they do use mHealth communication technology. All the evidence generated from the three phases allowed the researcher to identify specific findings. These findings were used to draft the framework informing the development of an mHealth initiative for rural caregivers. This draft framework was validated by the expert stakeholders and finalised during the workshop. 7.4 FACTUAL CONCLUSIONS Factual conclusions describe facts derived from evidence in data collected during the research process (Trafford et al., 2014). Factual conclusions based on the evidence from each phase will be presented. 7.4.1 Phase 1 Individuals assume a caregiving role voluntarily or involuntarily, formally or informally. The care recipient’s characteristics, their condition or issue, and the setting in which caregivers deliver care, challenge their caregiving roles. Certain factual conclusions could be made from the findings of Phase 1. Caregiver challenges were captured in three themes and relevant subthemes, while a fourth theme represented their interest in communication technology offering a possible solution to receiving support. Psychosocial challenges included four subthemes, namely, their well-being, roles, beliefs, and personal control. 180 Their social resource challenges involved three subthemes, that is, relationships, support services, and external challenges. The third theme described their informational challenges through two subthemes, resources, and the adolescent's behavioural issues. The fourth theme portrayed caregivers' interest in communication technology as presenting a possible solution to challenges they experienced and indicated their communication technology preferences. These caregivers preferred SMS, phone calls, and using a computer to access information. 7.4.2 Phase 2 The systematic review aimed to articulate if using communication technology strengthens caregivers' behaviour positively when they care for adolescents with mental health issues. The researcher formulated three thematic conclusions after the data of the five included articles had been analysed and synthesised. Thematic conclusion 1 involves the types of communication technologies described in the articles that were included. Communication technology used in these studies was web-based interventions, and they used social media, email, phone calls, text messages, and online formats to communicate with target populations. The target population gave positive feedback regarding the use of communication technologies, though the focus was not on caregivers’ experiences of the different types of communication technologies. Thematic conclusion 2 summarises the target population depicted in the five articles that were included. This population consisted of parents, caregivers, or family members of adolescents with mental health issues. The third conclusion focused on the IMBP determinants presented in the outcomes of the five articles that were included. These IMBP determinants may explain the strengthening of positive behaviour in a practical way. Specific IMBP determinants described in the five studies were caregivers' self-efficacy, which showed an improvement, better communication skills between the caregiver and adolescent, effective parenting skills, and increased knowledge of caregivers. 181 7.4.3 Phase 3 Phase 3 completed the research process. Expert stakeholders validated the draft framework during a workshop and contributed a few additional ideas to only three components on the draft, which demonstrated overall satisfaction with the framework. These expert stakeholders contributed to the following components: community needs, desired results, and evidence-based strategies, to finalise the framework. After consensus, the framework was finalised. 7.5 CONCEPTUAL CONCLUSIONS Conceptual conclusions provide a reasoned understanding of the researcher's interpretation of the facts in alignment with the framework. Figure 7.1 serves as a point of reference to explain the conceptual conclusions based on the summary of the framework components (source: W.K. Kellogg Foundation, 2004). Figure 7.1: Summary of the components in the final framework Meaningful interpretation of research findings helped the researcher to unfold conceptual conclusions (Trafford et al., 2014). The formulation of the conceptual conclusions will be discussed within the context of the theory-of-change logic model 182 framework components that imply that positive behavioural outcomes are linked to the IMBP determinants. Using a range of appropriate data collection techniques ensured triangulation of evidence, which exhibits the context of the proposed mHealth initiative portrayed in the framework. Information ranging from the local perspectives of rural caregivers to available literature served as contextual evidence in the planning of this framework. This study revealed a framework that proposed a programme to support rural caregivers of adolescents in the Kopanong municipality. Supporting caregivers of adolescents with mental health issues (programme) through an mHealth initiative may be contextually influenced. We can conclude that a better understanding of the caregivers’ context enabled the researcher to develop a framework in answer to the problem statement. A limited understanding of caregivers’ context leads to inadequate consideration of the influential factors that could possibly affect a programme. The researcher had to pay attention to the contextual factors as the embeddedness of the problem statement. Through exploration, the problem helps to build the partnerships needed to make change a reality, as articulated in the framework. In clarifying the caregivers’ context, it becomes possible to bridge the gap between the problem and the planned framework. Based on the findings derived from multiple research methods, evidence confirms the relevance of the problem statement indicated by the researcher. It can be concluded that the framework has the potential to address the problem of inadequate support experienced by rural caregivers of adolescents with mental health issues. The final framework is grounded in the caregivers’ reality, as part of the problem is living in a resource-constrained setting without any support. Findings from the three phases outlined the caregivers’ needs. It became evident in the findings that caregivers (the community) need support. The study recognised that the resource-constrained environment cannot be separated from caregivers’ needs. Furthermore, it became clear that a programme that is planned to address unmet support needs should benefit rural caregivers. Developing an mHealth 183 communication framework was intended to address the gap between rural caregivers’ unmet needs and providing support through an mHealth initiative. To conclude, if a framework for an mHealth initiative could be used to support rural caregivers, it could improve caregiving behaviour in relation to caring for adolescents with mental health issues. Evidence from the study suggests that the desired results that were expected are based on caregiver behaviour. This implies that, if the programme is effective, there is an expectation, based on various outcomes depicted in the framework, that caregiver behaviour will change and become more positive towards the adolescent. Though individuals may have different desires related to outcomes and expectations, the researcher concludes that all stakeholders shared similar visions constituting the desired results. In articulating the desired results, the influential factors should be borne in mind. Such factors might affect the success of the programme, in either a positive or a negative way. The study’s findings indicate that the caregivers are interested in an mHealth initiative; however, influential factors can play a role in the success of such an initiative in a resource-constrained environment. All possible influential factors that could serve as either barriers or facilitators were documented in the framework. The conclusion here is that a framework for rural caregivers may contribute to successfully supporting them if facilitating factors are strengthened, and barriers are minimised. As the study indicates, various evidence-based strategies related to communication technology have been found to be useful in supporting rural caregivers. The findings of the study discussed mHealth strategies that have proven viable for caregivers in resource-constrained settings. These strategies are outlined in the framework as evidently the best way to achieve the desired results. We may conclude that the suggested strategies will support the rural caregiver during caregiving practices in achieving the desired results associated with positive behaviour linked to the IMBP determinants. 184 The researcher assumed that an mHealth initiative, in collaboration with Department of Health stakeholders, would support rural caregivers. Through this research, evidence from findings confirmed these assumptions made by the researcher. These assumptions could influence whether the programme will accomplish the desired outcomes. These assumptions were made explicit by the researcher during the workshop that was validated by the expert stakeholders. It can, thus, be concluded that assumptions made by the researcher were validated by the expert stakeholders that may possibly trigger some action to pilot the framework. Figure 7.1 summarises the component descriptions in the final framework. 7.6 LIMITATIONS A number of limitations of this study need to be considered and understood in the context of the findings. One limitation was the small sample that was used for the empirical data collection, and the fact that the majority of participants were women in a specific rural setting in South Africa, which implies limited generalisability. This limitation suggests that additional research investigations should be undertaken into the interest in communication technology by rural caregivers of adolescents with mental health issues in other parts of South Africa, and among similar populations in other countries. The systematic review did not generate information about specifically Black rural caregivers, who use communication technology in caring for adolescents with mental health issues, although the search string was all-inclusive. This under-representation of the target group in the current research posed some challenges for the researcher concerning generalising rural caregivers’ use of communication technology influencing the IMBP determinants when caring for adolescents with mental health issues. As a way to address this limitation, the researcher engaged in a comprehensive literature search in Chapters 2 and 3, and focused on various components related to caregivers, adolescents with mental health issues, resource- constrained settings, caregiving behaviour and communication technology, and 185 solicited input from expert stakeholders who were knowledgeable about the study context. 7.7 IMPLICATIONS AND RECOMMENDATIONS OF THE STUDY The following section serves to point out several substantial implications derived from the conceptual conclusions. This study draws implications for theory, practice and future research, and makes related recommendations. 7.7.1 Implications for theory Investigation of the literature showed a lack of existing theory-of-change frameworks for rural caregivers of adolescents with mental health issues in South Africa. In this case, a theory-of-change logic model framework (Chapter 6) was developed, to support rural caregivers by using an mHealth initiative, while the IMBP served as the theoretical underpinning of the programme. This study is the first in South Africa to develop a framework for the development of an mHealth initiative through which caregivers of adolescents with mental health issues may be supported, consequently addressing the dearth of frameworks for initiating programmes for rural caregivers. With this in mind, this study carried out an iterative process to develop the framework and was guided by a theory of change, which is a crucial facet of intervention development, piloting, implementation, and evaluation in complex interventions. Behaviour change requires a conducive environment. Environments might complicate an intervention that was described as an influential framework component as well as a background factor of the IMBP model. Environments are more changeable than behaviour and can be challenging in a resource-constrained setting. Indeed, the framework listed possible support factors or barriers to the strategies proposed. The proposed strategies are assumed to lead to the desired results, including change in IMBP determinants; however, the mentioned mHealth strategies need to be developed for a resource-constrained environment. This has implication for developers, who should tailor the proposed mHealth strategies according to the resource-constrained environment. If the environment does not 186 support the mHealth strategy, the expected results will be influenced, resulting in negative IMPB outcomes. Negative IMPB outcomes, will consequently, affect caregiving practices. Developing tailored mHealth initiatives targeted to caregivers support needs are recommended and might increase caregivers’ utilisation of such initiatives. In addition, developers should consider focusing on one mHealth initiative that rural caregivers are already most familiar with in the piloting of the framework. Beyond this point, their interest in using a familiar mHealth initiative will guide the success of the framework. For example, launching a SMS mHealth initiative could be the first step in supporting rural caregivers in their caregiving practices. Supporting caregivers through an mHealth initiative may influence their caregiving practices and changing their skills, knowledge, self-efficacy, and attitudes towards the adolescent with mental health issues. The IMBP offers an understanding of the determinants that affect caregiving behaviour through the programme. This implies that, if the mHealth initiative (framework) supports the caregivers (the programme) sufficiently, then positive behavioural change (theory of change) is possible. Behavioural change may be reflected in the presence of positive behaviour that is demonstrated through the IMBP determinants. A suggestion is that the programme offers optimal support opportunities for rural caregivers through the PHC setting, that implies inputs by healthcare professionals, and church and school involvement, which could supplement mHealth initiatives and influence caregiver behaviour and practices. 7.7.2 Implications for practice There is a lack of frameworks for supporting rural caregivers of adolescents with mental health issues through mHealth initiatives. This is the first step to bridge the gap. This study described the developmental phase that formed part of a complex intervention. Before this study’s framework can be implemented, it should be tested for feasibility and piloting. The study points out that a collaborative approach by the public healthcare sector may foster commitment to support rural caregivers with 187 programmes delivered by mHealth initiatives. A practical implication is that the researcher, with the Department of Health as a key stakeholder, should start piloting this programme. Literature advises healthcare departments to tackle inadequate mental healthcare delivery and services in resource-constrained environments through task shifting at a primary care level (Javadi et al., 2017; Hanlon, 2016). A recommendation is that stakeholders could assist in the framework piloting of the mHealth initiative to suppor rural caregivers. Successful piloting and implementation of an initiative does not occur in isolation, but through collaboration with influential stakeholders from provincial and national departments of health, together with well- defined regulatory legislation and policy guidelines in the relevant sectors. Digital networks and access should be prioritised by the Department of Health, with special attention to the needs of resource-constrained settings. Furthermore, collaboration with rural caregivers, non-governmental and private organisations, local champions and leaders, and interprofessional team members should be considered; these collaborators could be partners in mobile healthcare delivery that targets rural settings. The services of a large cadre of PHC professionals are undermined by staff shortages, limited resources, and and increased burden of diseases, which is aggravated by limited mental health services and little expertise in rural settings. Communication technologies can be an essential resource in PHC for delivering mental healthcare to rural settings, though multi-sectoral stakeholder involvement would be required. Empowering caregivers through mHealth initiatives could be instrumental in mental health promotion and prevention, and increasing awareness of mental health issues among adolescents in resource-constrained environments. Another recommendation is that healthcare professionals ought to learn to be aware of the usefulness of mHealth initiatives for assisting with mental healthcare in PHC settings. These healthcare professionals could advocate for piloting of the mHealth initiative to be used for rural families in mental healthcare, thereby enhancing the adoption of mHealth technology in the public health sector. Healthcare professionals currently working in the PHC setting are already using mHealth applications in the 188 HIV, tuberculosis and maternity fields, though there is still a gap regarding delivering mental health services. In the end, initiating an mHealth framework that delivers programmes to rural caregivers of adolescents with mental health issues is likely to lead to independent caregivers, which would be beneficial, in light of staff shortages in rural PHC settings. To date, there has been limited research on the experiences, challenges and unmet needs of rural caregivers of adolescents with mental health issues. This study contributes to this knowledge by providing empirical findings and comprehensive literature reviews regarding these caregiver challenges and relevant unmet support needs. In addition, the Mmogo-method®, a culturally sensitive data collection technique, was used for the first time by the School of Nursing to collect valuable data from rural caregivers. Employing research techniques that resonate with rural participants and provide contextual rich data is a significant methodological contribution to nursing. A central theme of the thesis is the proposition that the support needs of rural caregivers of adolescents with mental health issues require individual attention and recognition, separate from the great deal of research available on other groups of caregivers. Healthcare services in rural settings could involve caregivers as partners in the care relationships, and acknowledge and support them. Supporting caregivers of adolescents with mental health issues should be explored further in research. Lastly, the framework resulted in collaborations with expert stakeholders from various fields relating to adolescent mental healthcare. Little was initially known about the Kopanong caregivers’ viewpoints, or about literature presented to the stakeholders, who will all probably make valuable contributions to knowledge in the Department of Health. It is hoped that the Department of Health will recognise the urgent need to support the researcher in piloting the framework that will aim to support rural caregivers of adolescents with mental health issues. Lastly, communication technologies should not offer caregiver support programmes in isolation, but, instead, serve as complementary services presented by healthcare professionals in PHC clinics – current care provision should not be replaced. 189 7.7.3 Implications for future research There are a few possible implications that could be taken into account for future research. These implications consider various issues that emerged from the study and indicate new avenues of research. In the light of this study, further research could explore rural adolescents’ views of mental health issues, as well as their relational experiences with their primary caregivers. In addition, research should investigate rural caregivers’ and adolescents’ mental health literacy by means of standardised questionnaires. Such questionnaires could compare and describe these two populations’ understanding and knowledge of mental health issues. Investigating the mental health literacy of caregivers andadolescents in South Africa will contribute to the current dearth of knowledge in the literature in this regard. Knowledge gaps noted in the comprehensive literature search indicated a need for more robust studies in South Africa, either related to rural caregivers of adolescents experiencing a mental health issues, or adolescents with a confirmed mental health diagnosis, and the preferred method of communication technology. Furthermore, studying the feasibility and implementation of communication technology by caregivers in rural settings will enrich intervention development. Lastly, future research needs to be done with relevant stakeholders after piloting the framework, to identify what they found to be the barriers or facilitators. This kind of research could lead the way to future implementation of the framework. Likewise, longitudinal research that involves healthcare professionals and families throughout the implementation process of the refined mHealth initiative after piloting could be valuable to explore later. One could suggest that healthcare professionals, especially nurses, ought to act as change agents in the field of caregiving and mental health services. Nurses should foster communities of practice among caregivers. By fostering communities of practice, collaboration could improve, as nurses could work together with caregivers and contribute to mental health promotion. This study calls for future work on 190 communities of practice between nurses and caregivers of adolescents with mental health issues. 7.8 CONCLUDING REMARKS This study took critical steps to generate a framework for an mHealth initiative that supports rural caregivers of adolescents with mental health issues. Given the emergence of mHealth interventions in resource-constrained settings, this thesis demonstrated that mHealth could provide support to rural caregivers. Indeed, the study succeeded in addressing the aim of the research by answering the research question and sub-questions. In doing so, the study contributed to existing research by addressing the knowledge gap identified in Chapter 1. The findings indicate that an mHealth initiative could support rural caregivers of adolescents with mental health issues in a resource-constrained setting. 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Child: Care, Health and Development, 45(1): 45–53. 234 ADDENDUM A POSTGRADUATE STUDENT AND PROMOTOR AGREEMENT FACULTY OF HEALTH SCIENCES UNIVERSITY OF THE FREE STATE 235 236 237 238 ADDENDUM B PERMISSION TO CONDUCT RESEARCH STUDY GRANTED BY THE HSREC OF THE UNIVERSITY OF THE FREE STATE 239 240 ADDENDUM C PERMISSION TO CONDUCT RESEARCH STUDY IN THE FREE STATE DEPARTMENT OF HEALTH (PHASE 1) 241 242 ADDENDUM D PERMISSION GRANTED BY THE HSREC TO CHANGE THE TITLE OF THE STUDY 243 244 ADDENDUM E INFORMATION LEAFLETS AND CONSENT FORMS FOR PARTICIPATING IN THE MMOGO-METHOD® (PHASE 1) (English, Afrikaans and Sesotho copies) 245 INFORMATION LEAFLET: PARTICIPATION IN THE GROUP (MMOGO-METHOD®) Study title: Conceptualising a mobile health communication framework for South African caregivers of adolescents with a mental health diagnosis in a rural area Researcher: Mrs Ronelle Jansen Mobile number: 0825544731 Dear participant I am a student at the School of Nursing from the University of the Free State. If you look after a young person who has a mental illness, I will ask you, if you want to join a group where we will talk about it. If you come for the group, I will ask you a question about, how cell phones can help you to support the mentally ill young person. You are going to “answer” me by making something with your hands. I will give you the material that you can use to make something. Afterwards everybody will get a turn to show the group what they made. Then you will be asked to talk about all the things that everybody made. I will take a photo of the thing that you made. I will tape the group’s talking with a recorder. The group will be about 2 to 3 hours long. You will only do one group. You must tell me if you want to do this group or not. I won’t be angry if you don’t want to do this group. You don’t have to pay any money for this group. I don’t think you will get hurt if you do this group. You will not receive any money if you come for the group. I will give you something to eat and pay for transport on the day of the group. I will not use your name if I talk about the groups’ discussion. I can go to other cities and tell them what happened in the groups or give the story to academic magazines. I will not give your name to these people. I can show them the photos of the things that you made, but I will not tell them who you are. If you have any questions or problems about the groups, phone me at 0825544731. If you don’t like something that I do or say, you can phone the following number and just tell them what is bothering you: 051 401 7795. Yours truly ____________________ Mrs. Ronelle Jansen, Cell: 0825544731, jansenro@ufs.ac.za 246 INLIGTINGSTUK: DEELNAME AAN DIE GROEP (MMOGO-METHOD®) Titel: Conceptualising a mobile health communication framework for South African caregivers of adolescents with a mental health diagnosis in a rural area Navorser: Mev. Ronelle Jansen Selfoon nommer: 0825544731 Beste deelnemer Ek is 'n student by die Skool vir Verpleegkunde aan die Universiteit van die Vrystaat. As jy vir 'n jongmens sorg wat ʼn mental siekte het, wil ek jou vra om aan 'n groep deel te neem, sodat ons daaroor kan praat. As jy vir die groep kom, gaan ek jou vra om iets met jou hande te maak. Ek sal vir julle die materiaal gee, wat jy kan gebruik om iets te maak. Daarna sal almal 'n kans kry om vir die groep te wys wat hulle gemaak het. Julle gaan dan gevra word om almal daaroor te praat. Ek gaan ook foto’s neem van dit wat julle gemaak het. Ek gaan alles opneem wat julle in die groep praat. Die groep sal sowat 2 tot 3 uur lank wees. Jy gaan net een groep doen. Jy moet vir my sê of jy hierdie groep wil doen of nie. Ek sal nie kwaad wees as jy dit nie wil doen nie. Jy hoef nie enige geld te betaal vir hierdie groep nie. Ek dink nie jy sal seerkry as jy hierdie groep doen nie. Ek gaan nie enige geld vir jou betaal om die groep te doen nie. Ek sal vir jou iets gee om te eet en vir vervoer op die dag van die groep. Jy gaan nie enige presente kry as jy die groep doen nie. Ek sal nie jou naam gebruik as ek oor die groepe praat nie. Ek kan na ander dorpe gaan en hulle vertel wat in die groepe gebeur het of ek kan die storie aan akademiese tydskrifte gee. Ek sal nie jou naam vir hierdie mense gee nie. Ek kan hulle die foto's wys van die dinge wat julle gemaak het, maar ek sal nie vir hulle sê wie jy is nie. As jy enige vrae of probleme het oor die groepe, bel my by 0825544731. As jy nie hou van enige iets wat ek gesê of gedoen het nie, kan jy die volgende nommer bel en vir hulle daarvan sê: 051 401 7795. Die uwe ____________________ Mrs. Ronelle Jansen, Sel: 0825544731, jansenro@ufs.ac.za 247 PAMPERING YA TSEBISO: HO NKA KAROLO SEHLOPHENG (MMOGO- METHOD®) Sehloho Thutho: Conceptualising a mobile health communication framework for South African caregivers of adolescents with a mental health diagnosis in a rural area Mobatlisisi: Mrs Ronelle Jansen Mobile number: 0825544731 Ho motho ya tlo nka karolo Ke morutwana Sekolong sa Booki, sa Universiti ya Foreisitata. Ha ikopanya o hlokomela motho a monyane anang le mathatha a kelello, ke tla o botsa hore ha o na thabela ho ikopanya le rona re bueng ka taba e. E bang o tla ho rona, ke tlo o botsa potso ya hore sel founu e ka o thusa jwang ho tshietsa motho a monyane anang le mathatha a kelello. O tlong araba ka ho etsa ntho e nyane ka matsohò a hao. Ke tla fana ka masela a tla o thusa ho etsa ntho e nyane ka matsohò a hao. Ka mora moo re tla kopa batho kaofeela ba re bontshe ntho e bona ba e entseng ka matsohò a bona. Ebe ha re qetile re tla bua ka dintho tse emong le emong wa lona a di entseng ka matsohò a hae. Ke tla qetella honka senepe sa dintho tse re di entseng ka matsohò a rona. Meqoqo ya rona kopanong tsena e tla bewa ka hara “tape” ke nna. Kopano tsa rona di tla nka hora tse 2 ho isa ho tse 3. O tla nka karolo ho sehlopa sele seng. O tla ntsebisa ha o batla ho nka karolo ho sehlopa sena. Ha ke na kwata ha o sa batle ho ba karolo ya hlopa sena. Ha ona patala tjhelete ho hlopa sena. Ha ke nahane o ka lemala ha ole hlopeng sena. Ha o no thola tjhelete ha ole karolo ya hlopa sena. Empa o tla thola dijo, ke tla patala le taxi mohlang re tsamayang re le sehlopa. Ha ke na sebedisa lebitso la hao ha ke qoqa ka ditaba tsa hlopha sa rona. Empa nka kgona ho ya tropong tse ding ka ba qoqela hore na ho ne ho etsahala eng ka hara hlopha sa rona, kapa ka fana ka taba tsa hlopha sena ho ba ngodi ba di buka. Ke kopa o tsebe hore ha hona mohlang ke tla fana ka bitso la hao ho batho bana. Ke tla ba bontsha feela dintho tseo o di entseng ka matshoho a hao, mara eseng ke fane ka lebitso la hao. Ha o na le di potso kapa mathatha mabapi le hlopa se, o ka nfounela ho 0825544731. Ha o sa rate ntho e ke buang kapa e ke etsang, o ka letsetsa 051 401 7795. Wa ba jwetsa hore ke eng e sa o tswarang handle. Wa hao ya ratehang ____________________ Mrs. Ronelle Jansen, Cell: 0825544731, jansenro@ufs.ac.za 248 INFORMED CONSENT: PARTAKING IN THE GROUP (MMOGO-METHOD®) You have been asked to do a group in _______________________ (town) You have been told by Mrs Ronelle Jansen what the group is about. She told you that she will help with transport and something to eat if you do the group. If you feel hurt by the group talking, she will arrange somebody to help you with it. You may phone Mrs Ronelle Jansen at 0825544731 any time if you have questions or problems about the group or if you are hurt by the group’s talking. You can phone the following number, 051 401 7795, at the University of the Free State, if you have any questions about something that Mrs Jansen said or did in the groups that you don’t like: You are free to join the group or not. You can stop at any time if you don’t want to do it anymore. You will not be harmed or punished if you don’t want to do the group. If you agree to join the group, you will be given a signed copy of this document as well as the information leaflet. Mrs Jansen told me everything about the group process. I understand what to do in the group and I give my permission to do the group. _____________________ __________________ Signature of Participant Date _____________________ __________________ Signature of Witness Date (Where applicable) ___________________ __________________ Signature of Interpreter Date (Where applicable) 249 INGELIGTE TOESTEMMING: DEELNAME AAN DIE GROEP (MMOGO-METHOD®) Jy is gevra om 'n groep te doen in _______________________ (Dorp) Mev. Ronelle Jansen het vir jou vertel waaroor die groep gaan. Sy het genoem dat sy met vervoer sal help asook iets om te eet as jy vir die groep gaan kom. As jou hart seer word wanneer jy in die groep praat, sal sy reël dat jy hulp daarvoor kry. Jy kan mev. Ronelle Jansen, enige tyd bel as jy vrae of probleme oor die groep het, by 0825544731. As die groepe jou hartseer gemaak het, kan jy haar ook bel. Jy kan die volgende nommer, 051 401 7795, by die Universiteit van die Vrystaat bel, indien jy enige vrae het oor iets wat ek, mev. Jansen, gesê of gedoen het in die groep waarvan jy nie hou nie. Jy kan kies of jy die groep wil doen of nie. Jy kan enige tyd stop as jy dit nie meer wil doen nie. Jy sal nie seergemaak of gestraf word as jy dit nie wil doen nie. As jy besluit om die groep te doen, sal jy 'n getekende afskrif van hierdie dokument kry, asook die inligtingstuk. Mev Jansen het vir my alles oor die groepproses gesê. Ek verstaan wat om in die groep te doen en ek gee my toestemming om die groep te doen. _____________________ __________________ Handtekening van deelnemer Datum _____________________ __________________ Handtekening van getuie Datum (Waar van toepassing) _____________________ __________________ Handtekening van interpreteerder Datum (Waar van toepassing) 250 TUMELO FOROMO: HO NKA KAROLO SEHLOPHENG (MMOGO-METHOD®) O kopilwe ho etsa sehlopha _______________. (Toropo) O se o jwetsitswe hore sehlopa sena ke sa eng ke Mme Ronelle Jansen. O jwetsitse hore o tla o thusa ka tjhelete ya taxi le dijo ha o nka karolo ho se hlopha sena. E bang utlwa bohloko ke meqoqo e ka hara sehlopha, o tla o batlela motho a tla bua le wena. O ka founela Mme Ronelle Jansen Ho 082 554 4731 nakong engwe le engwe ha ona le kapa mathatha mabapi le sehlopha. O ka letsetsa 051 401 7795, Universiti ya Foreisitata ha o na le di potso mabapi le ntho e Mme Jansen a e buileng kapa a entseng o sa e rateng. O ka nka karolo ha o batla. O ka emisa nako engwe le engwe ha o sa batle ho tswela Pele. Ha ono fuwa kotlo kapa wa utlwiswa bohloko ha o sa batle ho nka karolo. Ha o dumela ho nka karolo sehlopheng se, o tla fuwa pamperi/tokomane ena e tsamaya le Pamperi ya di tsebiso. Mme Jansen o njwetsitse tsohle ka sehlopha sena. Ke ya utlwisisa hore karolo yaka ke efeng ka hara sehlopa hape ke fana ka tumello yaka ya hoba karolo ya sehlopha. _____________________ __________________ Motekeno wa Monkakarolo Letsatsi _____________________ __________________ Motekeno wa Paki Letsatsi (moo ho hlokehang) _____________________ __________________ Motekeno wa Toloko Letsatsi (moo ho hlokehang) 251 ADDENDUM F SYSTEMATIC REVIEW CRITICAL APPRAISAL: TWO SENIOR RESEARCHERS’ REFERENCES PHASE 2 252 Researcher 1: Dr Deirdre E. van Jaarsveldt obtained an MSocSc in Psychiatric Nursing and a PhD in Higher Education Studies from the University of the Free State (UFS). She is currently the Head: Research Portfolio at the School of Nursing, UFS. Dr van Jaarsveldt has been in the employment of the UFS since 1999 and has extensive experience in psychiatric nursing, child psychiatric nursing, learning and teaching, as well as research. The focus of her research and publications is on diversity and inclusivity in higher education Researcher 2: Dr. Cynthia Spies obtained the BSocSc degree in Nursing at the University of the Free State (UFS) in 1993. She obtained a Diploma in Child Health Nursing in 1995 at the Free State School of Nursing. She joined the School of Nursing at UFS as a part- time lecturer in 1996. Apart from part-time work at the School of Nursing, she worked as a professional nurse in children’s wards and the paediatric intensive care unit in the Universitas Academic Hospital in Bloemfontein. She obtained the Advanced University Diploma in Nursing Education in 2008 and MSoc Sc (Nursing) in 2010 at UFS. In 2011 she commenced a full time academic career at UFS and works as a lecturer who specializes in paediatric nursing and nursing education with a particular interest in high-fidelity simulation as a teaching and learning method. She obtained her PhD in Nursing in 2016. 253 ADDENDUM G SYSTEMATIC REVIEW: DATA EXTRACTION PHASE 2 254 Data extraction: Population: caregivers. Intervention: mHealth & eHealth. Outcomes: IMBP RCT Bibliographic detail Methodology Outcomes & Intervention Critical appraisal Study findings Grading & Hierarchy 1. A randomized trial of Aim: To examine the Hypothesis: Tool used: CASP tool for RCT: The results provide evidence that 10/11 teen online problem results of a randomized We hypothesized that parents of The trial addressed a clear TOPS was well received by parents A solving: Efficacy in clinical trial (RCT) of Teen adolescents in the TOPS group focused issue (population, and may contribute to improvements improving caregiver Online Problem Solving would report greater reductions intervention, comparator, in parental problem solving, outcomes after brain (TOPS), an online problem in depression and distress and outcomes) depression, and distress, particularly injury. Wade, Shari L.; solving therapy model, in greater improvements in problem among those of lower SES. Walz, Nicolay C.; Carey, increasing problem-solving solving than those in the IRC.  Families were randomly Although a trend was found for JoAnne; McMullen, skills and decreasing assigned to either TOPS or IRC greater reductions in global distress Kendra M.; Cass, depressive symptoms and Secondary hypothesis: using a randomization scheme in the TOPS versus IRC group, this Jennifer; Mark, Erin; global distress for We further hypothesised that that stratified participants based difference did not achieve statistical Yeates, Keith Owen; caregivers of adolescents socioeconomic status would on sex and race/ethnicity. This significance. However, SES Health Psychology, Vol with traumatic brain injury moderate treatment effects with was done to ensure that the moderated the effects of TOPS on 31(6), Nov, 2012 pp. (TBI). families of lower SES showing groups were equivalent with rational problem solving, positive 767-776. Publisher: greater improvements following respect to these characteristics. problem orientation, and depressive American Psychological Design: Randomized TOPS. symptoms, with parents of lower Association. control trial T Both participants and research SES who received TOPS reporting hird hypothesis: staff were aware of group significant improvement from Setting: The trauma Finally, we tested the hypothesis assignment. baseline to follow-up on each of registries and the inpatient that reductions in depression these measures, whereas parents of rehabilitation units of two and global distress were Participants in the TOPS and lower SES in the IRC group did not urban children’s hospitals mediated by improvements in IRC groups did not differ report improvements. Interestingly, problem solving. significantly with respect to parents of higher SES in the IRC Sample: A total of 137 demographic characteristics treatment also reported significant children were identified as Data collection: such as age or SES nor did they increases in their positive problem potentially eligible. We Caregivers in both groups differ on measures of parent orientation and concomitant successfully contacted 121 completed a satisfaction survey problem solving, depression, or reductions in depression, whereas of these families regarding and those receiving TOPS psychological distress at pre- those of higher SES in TOPS failed their participation. completed a companion treatment. to report improvements on these 255 Forty-one (n=41) consented questionnaire regarding ease of measures. Thus, the findings and completed baseline use and helpfulness of specific Both treatments were presented provide some evidence that while assessments. aspects of the TOPS Web site as active and potentially helpful TOPS may be effective in reducing TOPS/20, IRC/21. (Web site Evaluation treatments. depression among parents of lower Questionnaire; WEQ), SES, IRC may be as effective for Inclusion criteria: Record of participants regarding parents of higher SES. Eligibility criteria included Intervention group: completion or discontinuation. age at enrolment between The TOPS intervention involved Caregiver satisfaction: 11 and 18 years and an initial home visit by the Both qualitative and quantitative Respondents in the TOPS group hospitalization for a therapist and 9–13 subsequent methods were used to assess rated the program as significantly moderate to severe web-based sessions. The the caregiver’s experience with more helpful overall as well as more traumatic brain injury (TBI) content for each session was the TOPS and IRC websites, helpful in working with their child in the previous 18 months covered in two separate parts: in associated technology, and than did respondents in the IRC the first part, the teen, primary intervention content. T tests and group. Additionally, TOPS Exclusion criteria: caregiver, and other participating chi square analyses or Fisher’s participants rated the program as Adolescents were excluded family members completed a exact tests were conducted more enjoyable than IRC if the primary language self-guided module that could be to compare the TOPS and IRC participants. Nearly all participants in spoken in the home was not accessed at a password- groups on continuous and both groups endorsed increased English; there was protected Web site; and then, in dichotomous background and knowledge regarding TBI, but documentation of child the second part, participating injury characteristics, significantly higher proportions of abuse as a cause of the family members reviewed the respectively. TOPS participants endorsed injury and the perpetrator Web site content with the understanding their child better and remained in the home; or therapist during a synchronous Similar analyses were feeling less stressed. if the teen or primary videoconference. Caregivers in conducted to examine baseline caregiver had a psychiatric both groups completed a differences between those who Improvements in problem solving: hospitalization prior to the satisfaction survey, and those completed the study and those Post hoc analyses indicated that injury. receiving TOPS completed a who dropped out. only parents of lower income in the companion questionnaire TOPS group reported significant regarding ease of use and Overall group differences were improvements in rational problem helpfulness of specific aspects of examined using analysis of solving from baseline to follow-up. the TOPS Web site. Participants covariance, in which the For the positive problem orientation in the TOPS group had an baseline score on the measure subscale, post hoc t test analyses average of 10 synchronous of interest served as a covariate revealed that parents of lower meeting with the therapist and thereby allowing us to assess income in TOPS group and parents 256 each meeting involved change over time. of higher income in the IRC group approximately 1 hour of direct both reported significant contact and 1 hour of scheduling improvements from baseline to and charting. follow-up. Control group: Improvements in depression and Families in the IRC group also global distress: received high-speed Internet Post hoc analyses revealed that access and a computer and parents of lower SES in the TOPS printer if they did not currently group reported significant reductions have them. Additionally, IRC in depressive symptoms from families received access to a baseline to follow-up, as did parents home page of brain injury of higher SES in the IRC group. SES resources and links to online did not moderate treatment effects resources but were not able to on the SCL-90, nor did the groups access specific session content. differ on the SCL-90 at follow-up Families were encouraged to after controlling for baseline scores, spend at least an hour each F(1, 32) _ 3.05, p _ .09, [(TOPS M _ week accessing information 48.85 (SE _ 1.98) vs. IRC M _ 54.03 regarding pediatric brain injury (SE _ 2.16)]. on the Web throughout the 6- month intervention period. At Limitations: follow-up, parents provided The study is limited by the relatively information about the Web sites small and heterogeneous sample. visited and the time spent at The study design also precluded each site. distinguishing improvements due to the specific elements of the Follow-up assessments were treatment (i.e., training in problem completed 7.83 months following solving) from those arising from baseline in the TOPS group and supportive involvement with a skilled 7.92 months following baseline therapist. Assessment of problem in the IRC group. solving skills and parent distress relied solely on self report, and thus To address disparities in Internet improvements may have been 257 access and utilization, all inflated by social desirability biases. participating families were Additionally, utilization data provided with high speed were not collected from the IRC Internet access through the group thus precluding comparison of project, when available. the groups with respect to time Additionally, any family without spent on the intervention. an existing home computer was given one to use for the duration Recommendations: the study. Future studies would benefit from extended follow-up and objective measures of parent problem solving skills and depressive symptoms and global distress. Larger studies employing multifactorial designs would enable researchers to evaluate the relative importance of the therapist’s involvement as well as the added value of the additional content on anger management, communication, and social skills, beyond that of standard problem- solving therapy. 2. A web-based mental Aim: Hypothesis: 1. Tool used: CASP tool of The total knowledge score was 9/11 health program: To test a web-based We hypothesized that compared RCT significantly greater for the A Reaching parents at program providing working to the control group, parents 2. Clear design and focus. experimental group than for the work. Deitz, Diane K.; parents with the knowledge receiving the web-based 3. Parents or primary control group, as were the scores for Cook, Royer F.; Billings, and skills necessary for program would exhibit caregivers of elementary, the knowledge subscales of anxiety, Douglas W.; prevention and early significant gains in important middle, and high school depression, and treatment options. Hendrickson, April; intervention of mental outcomes, including (a) youth were randomly Paired t-test analysis of pretest to Journal of Pediatric health problems in youth. knowledge of mental health assigned to either posttest differences in the Psychology, Vol 34(5), issues in youth; (b) self-efficacy an experimental group that experimental group indicated that Jun, 2009 Special Issue: Design: Randomized in handling mental health issues received access to the YMH mean scores rose in the eHealth in Pediatric controlled trial with pre test– in youth; (c) better family Web site or a waitlist control expected direction for all subscales 258 Psychology. pp. 488-494. post-test comparisons in cohesion, adaptability, and group. and were statistically significant for Publisher: Oxford each group. positive communication; and (d) 4. Can’t tell if it was blinded. knowledge of treatment (t= -2.92, University Press more positive attitudes toward 5. The experimental and control p=.006) and total knowledge (t= - Setting: Workplace of seeking mental health services. groups did not differ 7.96, p=000). These analyses did parents (?) ISA associates. significantly in chi-square not reach significance for knowledge Data collection: analysis on any of the of anxiety, depression, and Sample: The 99 Pre-test and post-test surveys. demographic characteristics parenting. Paired t-test analysis of participants in our study Different scales to measure of interest. pre-test to post-test differences in were recruited from a 6. Not clear if treated equally. the control group were non- worksite with a pool of 350 Intervention: 7. Ninety-nine employees significant for all measures except employees who were Parents or primary caregivers of enrolled in the program, total knowledge (t= -6.69, p=.000). caregivers of youth elementary, middle, and high resulting in a participation There were no significant between the ages 5 and 21 school youth were randomly rate of 28% of the company- differences between the groups on (size of the pool estimated assigned to either an estimated pool of potential the measures of family by the company’s wellness experimental group that received participants. The response communication, adaptability, director). access to the YMH Web site or a rates were similar for the cohesion, and attitudes toward waitlist control group. The intervention (96%) and mental health issues. There was a Inclusion criteria: intervention period was for 2 control groups (98%). significant difference between the Participants were required weeks, and participants in the There were no significant experimental and control groups on to have a child currently experimental group were differences between the self-efficacy in handling mental living at home but were not encouraged to view the program groups on the measures of health issues in their children required to have a child as often as possible within that family communication, (F=12.73, p=.001). Also significant currently experiencing a time period. After the pretest and adaptability, cohesion, and was the paired t-test analysis of mental health difficulty. review period, all participants attitudes toward mental increases in self-efficacy from pre- (experimental and control health issues. The total test to post-test among the Exclusion criteria: conditions) were asked to knowledge score was individuals receiving the intervention Not stated. complete the post-test survey. significantly greater for the (t= -3.20, p=.003). The study results The web-based YMH program experimental group than for demonstrate that parents receiving a consists of four modules the control group, as were web-based intervention had that are multimedia rich, fully the scores for the knowledge significantly greater knowledge of narrated, and interactive. The subscales of anxiety, children’s mental health issues and use of a multimedia approach depression, and treatment greater self-efficacy in handling (as opposed to the usual ‘‘click options. There was a these issues compared to waitlist and read’’ programs) was significant difference between controls. These findings indicate that 259 designed to make the program the experimental and control the YMH program can be an more appealing and engaging, groups on self-efficacy in effective intervention for improving while providing opportunities for handling mental health issues parents’ knowledge of children’s behavioral modelling and raising in their children. Sub mental health problems and boost self-efficacy, with the intent of analyses investigating their confidence in handling such leading users to adopt new dosage of intervention, issues. No significant effects of the attitudes, beliefs, and behaviors differences between families intervention were found in family with known or suspected cohesion, adaptability, Experimental group: mental health problems, and communication, and attitudes toward Experimental group participants reactions to the program mental health and help-seeking. were asked to rate the web- were also conducted, but Limitations:First, a potential based program content on were not significant, and are concern with any web-based dimensions of clarity, usefulness, not reported in this brief. intervention is the ‘‘dose’’ or level at appeal, and ability to motivate. 8. ANCOVAs analysis used. which participants completed their 9. Can be applied. review of the program. We could not Control group: 10. Needs clear. adequately control for individuals Waitlist control 11. Benefits are worthwhile. who simply skimmed through the program or those who had minimal interest in the program content. Another limitation relates to the lack of external validity—the extent to which the findings are generalizable to other, more diverse workforces and populations—as all participants were white and relatively well educated and the majority did not have a known or suspected mental health concern with their child(ren). Finally, the cafeteria-based recruitment procedure probably led to some selection bias in the sample. Recommendations: Web-based programs can also be 260 offered to individuals in multiple settings, including the workplace and at home, thereby reaching large numbers of parents. As use of the Internet continues to grow in the general population and in multiple settings such as the workplace, these kinds of programs hold promise for reaching large numbers of parents who are concerned with their children’s mental health. Future research could compare the added value of web-based interventions to traditional clinical intervention. Grading Bibliographic detail Methodology Outcomes & Intervention Critical appraisal Study findings & Hierarchy 3. Acceptability and Aim: This study aimed to Outcomes: Tool used: CASP tool RCT Aim 1 (feasibility): 10/11 feasibility of an e-mental pilot a group-based, e- The study examined the 1. Clear design and focus. Most participants (n = 41, 91.1 %) A health intervention for health, cognitive behavioral feasibility (aim 1) , acceptability 2. Independent personnel at had Internet access and the parents of childhood intervention to support (aim 2), and safety and Sydney Children’s Hospital necessary technical equipment (e.g., cancer survivors: parents of children psychological impact (aim 3) of used an electronic web camera and microphone). The "Cascade". By: recovering from cancer. Cascade. randomizer to allocate structure of Cascade appeared Wakefield, Claire; . Question 1 and aim 1, participants to Cascade or feasible: 40 % of parents (n = 12) Sansom-Daly, Ursula; Design: RCT Question 2 and aim 2 the waitlist. indicated that the existing three McGill, Brittany; Ellis, 3. It was not possible for the weekly, 2-h, sessions were Sarah; Doolan, Emma; Setting: Sydney Children’s Question 3: psychologists, the research appropriate, with 11 parents (37 %) Robertson, Eden; Hospital, Australia Was Cascade associated with officer, and the participants to indicating that they would value Mathur, Sanaa; Cohn, any changes in parents’ quality be blinded. However, the more sessions. Fidelity data Richard; Wakefield, Sample: of life (QoL, the primary statistician remained blinded revealed good adherence to the Claire E; Sansom-Daly, Parents n=56 outcome), depression, anxiety, until all analyses were intervention manual. The Ursula M; McGill, Brittany Intervention n=25 fear of recurrence, or family completed. psychologists reported a technical C; Ellis, Sarah J; Doolan, Complete n=24 functioning (secondary There were no significant difficulty in most sessions (n =17, 261 Emma L; Robertson, Waitlist n=22 outcomes)? Different scales and demographic or cancer 80.9 %), Eden G; Cohn, Richard questionnaires used. treatment differences J. Supportive Care in between parents randomized Aim 2 (acceptability): Cancer. Jun2016, Vol. 24 Inclusion criteria: Data collection: to Cascade or to the waitlist. YSQ data indicated that parents Issue 6, p2685-2694 Parents were eligible if they Parents completed However, Cascade parents were very satisfied with Cascade (i) had a child aged 15 questionnaires at baseline (T1), were more likely to reside in and that it met their needs. Most years or younger who had 2 weeks (T2), and 6 months (T3) a regional/ remote area. participants positively evaluated completed cancer treatment after participation in Cascade. 4. After 6 months, waitlisted Cascade’s online format, skills- with curative intent in the Waitlist controls were assessed parents were invited to focused content, and the peer-group past 5 years, (ii) were able during the waitlist period (T2/T3), participate in Cascade. setting. Most parents indicated that to read English, and (iii) and following their participation Parents completed Cascade was “quite” or “very” were able to access the in Cascade (T4). questionnaires at baseline beneficial (n =19, 70 %). Internet in a private location (T1), 2 weeks (T2), and 6 Qualitatively, parents noted that Intervention group: months (T3) after Cascade was a significant time Exclusion criteria: participation in Cascade. commitment (n= 6), but that its Parents were excluded if, The manualized program Waitlist controls were benefits outweighed the time “cost” during the interview, they (i) consists of three, weekly, 120- assessed during the waitlist (n = 5/6). Parents appreciated had insufficient min online sessions delivered period (T2/T3), and following Cascade as a “nonthreatening” and English skills; (ii) were through WebEx (Cisco WebEx, their participation in Cascade “honest” forum that provided a experiencing extreme USA). Cascade is a synchronous (T4). context for reflection and processing anxiety or depression e-mental health intervention as it 5. The number of parents who (e.g., “helped consolidate my (reflected in extremely is delivered B-live by a dropped out of the study was thoughts and feelings”) and fostered severe scores on the psychologist in real time. Two equally distributed across “the realisation that you are not Depression, Anxiety, Stress psychologists specifically trained groups. In line with alone”. Overall, they rated the level Scales-Short Form and in the delivery of Cascade were recommend-dations for pilot of peer-to-peer conversation, rapport endorsed serious suicidal involved in the running of the studies [35], the target within the group, participant intent; (iii) endorsed current program. WebEx is a password- sample size was 40 openness, and mutual trust between symptoms of psychosis or protected video-conferencing participants (i.e., ∼20 in each participants, most highly. substance abuse; or (iv) program that allows up to six group, with a 1:1 allocation had a child who was on participants to be seen on the ratio). The trial was stopped Aim 3 (safety & psychological): active treatment, had screen simultaneously, much like when this sample was Participants appeared to be coping relapsed, or was in group SkypeTM. Cascade reached. Analysed according well overall: at baseline, few showed palliative care. groups comprised a psychologist to groups. severe symptoms of depression (n plus three to five parents. The 6. See findings aim 1 & 2 effect =0), anxiety (n =1), or stress (n =6). 262 same parents attended the same reported. Despite the There was no significant main effect group for all three sessions, led encouraging feasibility and of group (i.e., waitlist vs. by the same psychologist. After acceptability data, no intervention) or time (i.e., baseline each session, the psychologist significant results merged to vs. post-intervention vs. followup) on sent participants an email with indicate that the program quality of life, psychological purposely designed home improved parents’ QoL or functioning, and family practice activities. reduced distress. functioning. 7. Descriptive analysis used. It Control group: was significant. Conclusion: After 6 months, waitlisted 8. It can be applied. Cascade appears to be feasible and parents were invited to 9. Need described highly acceptable, and its efficacy is participate in Cascade. 10. Benefits worth harms and worthy of further evaluation. Good costs. evidence emerged for Cascade’s feasibility (aim 1). Good opt-in and attrition rates reflect a population that was receptive to psychological support. Parents indicated that the session structure was practicable, with many satisfied with the number of intervention sessions, or requesting more A strength of this study was its inclusion of parent and psychologist perspectives. Data from both perspectives demonstrated that Cascade was highly acceptable (aim 2). Consistent with psychologist impressions, almost all parents were highly satisfied with the skills taught during Cascade and indicated that its benefits outweighed the “burdens”. Despite the encouraging feasibility and acceptability data, no significant results emerged to 263 indicate that the program improved parents’ QoL or reduced distress. Limitations: The small sample size was a key limitation and precluded our capacity to detect any intervention effects. Apart from the small sample, there are several additional reasons why the program may not have yielded significant effects. Parents may not have received an adequate “dose” of the intervention across the three sessions. Also, the current sample was not clinically distressed and represented parents who had already had up to 5 years to adjust to their child’s survivorship. Further, while participants resided in many parts of the state of New South Wales, the hospital’s catchment area has residents of a higher than average socioeconomic status relative to other areas. Additional limitations include the lack of external fidelity checks and the absence of an attention control group. The study had a low representation of fathers. Recommendations: It is critical that future studies better engage this under-supported (fathers) group. The development of 264 future online interventions targeting not only this group but also parents of children affected by other serious illnesses. A four module (plus booster) program is likely to be acceptable, given that many parents requested additional sessions. Bibliographic detail Methodology Outcomes & Intervention Critical appraisal Study findings Grading & Hierarchy 4. Can mobile phone Aim: Does phone Primary outcome: Tool used: CASP tool RCT Primary outcome: 9/11 = multimedia messages multimedia messages The primary outcome of this 1. Clearly stated population, The mean number of clinic visits per 11/11? and text messages (MMS) to families of study was measured as the intervention, comparator and child for any reason was 1.3 (95% A improve clinic attendance Indigenous children with number of clinic appointments outcomes. confidence interval (CI) 0.6, 2.1) for for Aboriginal children tympanic membrane attended, for any reason, during 2. Yes, it was randomized. We the control group and 1.3 (95% CI with chronic otitis media? perforation (TMP): (i) the 6-week intervention period used Stata Version 11.1 for 0.6, 1.9) for the intervention group A randomised controlled increase clinic attendance; by each child. Attendance was participant randomisation. (Table 1a). There was no statistically trial. Phillips, James H.; (ii) improve ear health; and determined by accessing the The randomisation sequence significant difference between these Wigger, Christine; (iii) provide a culturally community clinic’s electronic was stratified by age and two groups (mean difference −0.1, Beissbarth, Jemima; appropriate method of primary care information system. community, with a 1:1 95% CI −1.1, 0.9; P = 0.9). The total McCallum, Gabrielle B.; health promotion? allocation number of clinic visits for any reason Leach, Amanda; Morris, Secondary outcome: 3. Assessors were blinded to in the intervention group was 1.5 Peter S.; Journal of Design: RCT The secondary outcomes were the intervention allocations. (95% CI 0.5, 2.5). The mean Paediatrics and Child (i) ear health state at the end of 4. Yes. See inclusion criteria. difference of 0.2 (95% CI −1.0, 1.4) Health, Vol 50(5), May, Setting: Two remote the study period (healed 5. (Can’t tell) but: YES between the two groups remained 2014 pp. 362-367. Northern territory tympanic membrane, presence However, both groups statistically non-significant (P = 0.7). Publisher: Wiley- Indigenous communities, of ear discharge, reduced received two stand-alone Blackwell Publishing Ltd Australia. perforation size); and (ii) text messages in English, Secondary outcome: participant satisfaction with text one at the start One child in the control group and Sample: messages and MMS, assessed acknowledging their three children in the intervention Fifty-three (n=53) Australian by face-to-face structured participation in the study and group had healed perforations. Aboriginal children with a interviews using standardised one at the end asking them These differences were not TMP living in remote questionnaires. to attend the clinic for the significant (risk difference 6%, 95% 265 community households with final assessment. Both CI −10, 20; P = 0.6). Around 70% in a mobile phone were Data collection: groups received an each group still had CSOM (risk randomised into Assessed by face-to-face information sheet with local difference −1%, 95% CI −30, 30; P = intervention (n = 30) and structured interviews using clinical treatment guidelines and 1.0) and 20–25% of children had a control (n = 23) groups. For standardised questionnaires. advice to attend the clinic weekly DP. In the control group, the both groups, 28 (57%) The end of study questionnaire for review. Experimental average baseline perforation size in respondents were primary included a mixture of intervention was different. the worst ear was 20% (95% CI 10, carers (mostly the child’s dichotomous, open-ended and 6. Yes. They were accounted 30). At follow-up, it was unchanged mother or grandmother) multiple choice questions such for. See p. 364 + 365. at 20% (95% CI 11, 30). The who owned the phone, 11 as ‘Did you see any phone 7. Yes. This pilot RCT did not average perforation size in the (23%) were primary carers messages from the Menzies Ear identify signifi- intervention group had increased (mostly child’s mother or Health Team?’ and ‘Would you cant differences in the from 20% (95% CI 15, 25) of the grandmother) who did not be happy to receive other health attendance rates or ear total eardrum at baseline to 25% own the phone and 10 related videos in the future?’ health outcomes resulting (95% CI 15, 35). The mean (20%) respondents were from regular MMS difference in perforation size in the the nominated household Intervention group: messaging. These finding worst ear at follow-up between the relatives who owned the Eligible participants were suggest attendance rates for two groups was 3% (95% CI −11, phone (child’s father, aunt randomised into two groups: severe otitis media in this 17) and was non-significant (P = or older sibling). Assessors intervention and control. The population are very low when 0.7). were blinded to the primary carers (or someone else compared with the intervention allocations. To in the household with a mobile recommended weekly clinic Participants’ views: reduce observer variation, a phone) in the intervention group review. We were able to Thirty-seven (76%) of all participants second blinded assessor were sent seven ear health MMS confirm the acceptability of at follow-up said they were happy to reviewed all the video in the local Indigenous language, mobile phone-based receive health messages in the recordings. Any perforation one every 4 days, with a window interventions to promote future (Table 4). Sixteen of the 19 size difference of >10% of ±24 h. The MMS were health outcomes in (84%) families in the control (95% CI between the primary accompanied by personalised these settings. 60, 90) and 21/30 (70%) families in examiner and second ear health text messages in 8. Yes. the intervention group (95% CI 50, blinded assessor were English that included a prompt to 9. It can be applied. 80) reported that they were happy to reviewed by a third visit the clinic for the children’s 10. Yes. All outcomes receive text or MMS health-related assessor. If there was any health check-ups. Follow-up for considered. messages in the future. The risk persistent disagreement, questionnaire (n = 30) 11. Worthy. difference of −14% (95% CI −37, 8) the assessment was based Follow-up for clinical outcomes was not statistically different (P = on the initial examiner’s (n = 28) 0.3). Nine (17%) participants 266 findings. presented to the clinic on the day Control group: they received this text message. The control group received no Three participants said that they Inclusion criteria: MMS and accompanying text would prefer simple text messages Participants had to satisfy messages. Follow-up for with a specific appointment time each of the following questionnaire (n = 19) rather than MMS health messages. eligibility requirements: (i) Follow-up for clinical outcomes be an Indigenous child (n = 19). We received signed informed aged 13 years or under; (ii) consent for 181 children. Fifty three have an acute or chronic However, both groups received (30%) children were able to be TMP; (iii) live in one of the two stand-alone text messages randomised (Fig. 1). The control two remote communities in English, one at the start group had 23 participants and the long term; and (iv) have a acknowledging their participation intervention group had 30. Clinic parent/carer or other family in the study and one at the end attendance was determined for all member living in the same asking them to attend the clinic 53 children. Forty seven (89%) household with a working for the final assessment. Both children had a follow-up ear mobile phone who was groups received an information examination and 49 (92%) willing to receive the sheet with local clinical treatment participant families completed a messages. guidelines and advice to attend follow-up interview. At follow-up, we the clinic weekly for review interviewed 19 (83%) participants Exclusion criteria: from the control group and 30 Not found (100%) participants from the intervention group. For both groups, 28 (57%) respondents were primary carers (mostly the child’s mother or grandmother) who owned the phone, 11 (23%) were primary carers (mostly child’s mother or grandmother) who did not own the phone and 10 (20%) respondents were the nominated household relatives who owned the phone (child’s father, aunt or older sibling). Eight (29%) primary carers (who 267 owned the phone) and six (55%) primary carers (who did not own the phone) reported that they did not see any of the messages. In the intervention group, 10 (33%) respondents reported not seeing any of the messages. Of these, two had broken phones, one phone number had been incorrectly transcribed, four said a relative had the phone, and one reported that the messages did not work. We received no explanation from the remaining two participants. Limitations: This pilot study was not able to recruit the desired sample size of 90 participants. One factor that contributed to this was unrest and fighting in one of the communities before and during the study, which restricted our time to contact and enrol families. Long waiting times at the local clinics can be a disincentive, and we were also not able to assess if participants did present to the clinic but did not wait to be seen. Taking into account our finding that the primary carer of the child was less likely to see the phone messages if other family members within the household owned the phone, it is probable that 268 this type of intervention would be more effective if the primary carer owned the phone. Recommendations: It is possible that short, simple text messages with appointment times or treatment at home reminders would be more effective in encouraging short-term behaviour change. Alternatively, a study conducted over a longer time period would potentially be more effective. Bibliographic detail Methodology Outcomes & Intervention Critical appraisal Study findings Grading & Hierarchy 5. Counselor-assisted Aim: The purpose of the Primary outcome: Tool used: CAPS tool RCT Both CAPS and IRC were 11/11 problem solving improves current study is to examine We hypothesized that CAPS associated with significant A caregiver efficacy the efficacy of Counselor- would result in greater 1. Yes. Clear focused reductions in caregiver distress, following adolescent Assisted Problem Solving reductions in parent depression population, intervention, however, CAPS was not more brain injury. Wade, Shari (CAPS) in improving and distress and greater comparator and hypothesis. effective than IRC in this regard. L.; Karver, Christine L.; caregiver adaptation increases in caregiving efficacy 2. To ensure that group However, results from the current Taylor, H. Gerry; following traumatic brain than would access to Internet composition was balanced study indicate that adults who are Cassedy, Amy; Stancin, injury (TBI). resources alone. with respect to both gender infrequent technology-users may Terry; Kirkwood, Michael and within each of the sites, eperience greater increases in W.; Brown, Tanya Design: RCT Secondary outcome: randomization was stratified caregiver efficacy if their experience Maines; Rehabilitation Moreover, we extended on these factors. with technology is scaffolded by Psychology, Vol 59(1), Setting: Registries of five consideration of potential 3. A SAS program was created therapist support and guidance. Feb, 2014 pp. 1-9. major trauma-centers in the moderators by evaluating the using permuted block sizes Interestingly, in the IRC group, Publisher: American Central and Western influences of race/ethnicity as for each of the without such support, parents who Psychological regions of the United well as factors considered in randomizations. A sealed were not frequent computer users Association States. previous studies (computer envelope containing group reported declines in caregiving usage, SES) on treatment assignment was handed to efficacy despite the fact that they Sample: response. the participants at the end of accessed information about brain 269 Randomized (n=132) the baseline visit allowing injury. In explaining this finding, it CAPS (n=65) Data collection: interviewers to remain naïve may be that when noncomputer IRC (n=67) Background questionnaire and to group assignment at the users are offered computer access baseline interview baseline assessment. Thus, without the support and scaffolding Inclusion criteria: interviewers/research assis- provided by the therapist to use the Children between the ages Intervention group: tants were unaware of group technology, general feelings of self- of 12–17 years who were Adolescents and their families assignment at both efficacy and confidence may hospitalized overnight for a were randomly assigned to assessments, whereas decrease, including caregiving com-plicated mild to severe either of two 6-month long parents were naïve to group efficacy. Thus, the present results TBI within the previous 1–6 Internet-based interventions: assignment only at the yield a more nuanced understanding months were considered for CAPS, described in greater baseline visit. of the potential role of prior inclusion. Additional detail below, a family problem- The groups were well technology experience in treatment eligibility requirements solving intervention that provided matched with respect to efficacy. Contrary to earlier studies, included documented alter- training in communication skills, demographic and injury the findings suggest that parents ation of neurological self-regulation and anger characteristics with no with limited prior computer functioning as measured by management. The intervention significant differen- experience may be equally or more either a Glasgow Coma was designed to be completed ces between groups likely to benefit from therapist- Scale (GCS) score less over a 6-month period with noted.To ensure that group guided, Web-based interventions. than 13 and/or evidence of weekly sessions for the first 2–3 composition was balanced Associations between demographic neurological insult as seen weeks and then biweekly with respect to both gender factors and self-report measures of on MRI or computerized sessions until the family and within each of the sites, distress and caregiving efficacy tomography, English as the completed the initial seven core randomization was stratified using point biserial correlations were primary language spoken in sessions. on these factors. CAPS, also non-significant, with coefficients the home, availability of the described in greater detail ranging from .01 between CES-D adolescent to participate in Control group: below, a family problem- and race, to .10 between CSES and the intervention, and family An Internet resource comparison solving intervention that race. Significant moderate to large residence within a 3 hr drive (IRC) group, a self-guided, provided training in correlations were observed among of the hospital. information-based program. communication skills, self- measures of caregiver distress (_.37 Families in the IRC group also regulationand anger between CSES and GSI, _.38 Exclusion criteria: received computers and Web management; or an Internet between CSES and CES-D, and .67 included: (a) insufficient cameras, the latter was provided resource comparison (IRC) between GSI and CES-D). child recovery by 6 months to keep the interviewers unaware group, a self-guided, For the trimmed intent to treat post injury to participate in of group assignment. Families information-based program. regression models for the CES-D, all the intervention (e.g., were encouraged to spend at 4. They were all accounted for. individual factors (income, race/ 270 persistent significant least 1 hr per week accessing Trial did not stop early. ethnicity, and computer use) were cognitive or verbal information regarding paediatric 5. See findings. eliminated due to non-significance. impairments that would brain injury on the Web 6. Yes. Some significance Results revealed a trend for greater prevent participation in the throughout the 6-month 7. Families who may be improve-ments in the CAPS versus intervention, such as intervention period and to track candidates for Web-based IRC group (p _.055). Follow-up inadequate verbal and the sites that they visited. interventions, such as those analyses removing participants who communication skills or living in rural areas, may be completed fewer than four sessions insufficient attentional expected to benefit from of CAPS revealed a significant effect capabilities); (b) psychiatric Web-based interventions for group, F(1, 110) _ 4.79, p _ .03. hospitalization for either that offer support for Although the R2 change was small child or parent during the technology use. (.03), mean differences at follow-up, year prior to the injury; (c) CAPS _ 9.90 (8.36) versus IRC _ family residence in an area 15.46 (11.75) indicated medium without high-speed Internet sized effects (Cohen’s d _ _.52). access; (d) child residence See Table 2. For the trimmed outside the home (e.g., regression models for the SCL-90 detention facility) or (e) GSI score, all individual factors were diagnosis of intellectual again eliminated due to non- disability (IQ 65) prior to the significance. Results revealed no injury. significant differences between groups at follow-up in either the intent-to-treat or more restricted analyses after controlling for baseline (preintervention) scores. Post hoc analyses indicated comparable, and statistically significant, reductions in global distress in both the CAPS and IRC group (M CAPS _ 3.29; M IRC _ 3.64; p _ .007 for both analyses), suggesting that both treatment conditions were associated with reductions in caregiver distress. Follow-up analyses revealed that, 271 among nonfrequent computer users, CAPS parents reported significantly higher levels of caregiver efficacy than did IRC parents at the 6-month follow-up, F(41) _ 7.15, p _ .01. See Figures 2a and 2b. The corresponding effect size was moderate (Cohen’s d _ .51). Conversely, among frequent computer users, there were no group differences in caregiver self- efficacy at follow-up, F(74) _ .05, p _ .82, and neither CAPS nor IRC evidenced changes in CSES scores from baseline to the 6-month follow- up. Contrary to expectations and prior research, caregiver education and race/ethnicity did not moderate treatment response on any of the parent outcomes assessed. Additionally, prior computer use did not moderate the efficacy of CAPS in reducing caregiver depression and distress. a significant interaction was found between group and computer use when considering CSES as the dependent measure, controlling for group and baseline CSES scores (_ _ _5.62, t _ _1.96, p _ .05). Parents who were non-frequent computer users again evidenced higher self-efficacy than did those in the IRC. Also similar to the intent to 272 treat analyses, caregiver education and race/ethnicity did not moderate treatment response on any of the parent outcomes assessed and prior computer use did not moderate the efficacy of CAPS in reducing caregiver depression and distress. Limitations: The groups were well-matched on most demographic, injury, and baseline characteristics; however, relatively low levels of distress on the SCL-90 GSI in CAPS group at baseline may have created floor effects Additionally, although the treatment conditions were equated for access to reliable information and resources regarding TBI, including Web sites regarding problem-solving strategies and stress management, the groups were not equated for therapist attention. Therefore, although we can tentatively conclude that CAPS is superior to access to Internet resources alone in reducing caregiver depressive symptomatology following TBI, we cannot conclude that it is superior to other forms of treatment affording therapist support. Reliance on self- report measures of parent outcomes is a further limitation. Additionally, as 273 reported in Figure 1, a large proportion (57.1%) of potential participants that were assessed for eligibility were either deemed ineligible or declined to participate, potentially limiting generalizability of the current findings. The exclusionary criteria that the family residence must be in an area with high-speed Internet access may result in families living in rural areas being underrepresented and the criteria that English must be the primary language spoken in the home potentially results in exclusion of members of diverse populations. Specifically, potential participants that decline participation were more likely to be non-White and have sustained less severe injuries than participants. It is also notable that the median family income of the obtained sample is above the national median despite substantial variability in income levels. These limitations in recruitment and generalizability should be considered when interpreting the current results. Additionally, although the intent-to-treat model suggested that greater sessions completed was associated with greater improvements in caregiver depression, it is notable that the 274 presence of a subset of participants that did not complete the entire course of treatment likely reduced the strength of the study’s design and limited our ability to detect improvements in caregiver outcomes that result following the CAPS intervention. Finally, the approach to assessing treatment fidelity to the CAPS intervention may be vulnerable to bias on the part of the therapist and untrained caregivers may be unable to make reliable evaluations about treatment fidelity. Future studies may wish to use other methods for assessing treatment fidelity, such as an expert independent rater. Recommendations: None stated. Quasi experiential Bibliographic detail Methodology Outcomes & Intervention Critical appraisal Study findings Grading & Hierarchy 6. Development and Aim: To assess the Outcomes: intended to increase Tool used: Joanna Briggs Outcomes acceptability: 9/9 = preliminary evaluation of feasibility of developing and parental knowledge, parental checklist for Quasi-Experimental Overall, parents were satisfied with 100% culturally specific web- implementing a culturally self-efficacy, parent–child studies. the content of the Stepping Stone ?C based intervention for specific web-based communication, and satisfaction program (M = 3.50, SD = .04), and parents of adolescents. intervention for Korean with parent–child relationships, 1. Yes gave high ratings for the length (M = By: Choi, H.; Kim, S.; Ko, parents, by assessing and to decrease parent–child 2. Schools with similar sizes 3.73, SD = .06), ease of use (M = H.; Kim, Y.; Park, C. G. recruitment, retention, conflicts, parental stress, and and profiles (e.g., students’ 3.75, SD = .06), and practicality/ Journal of Psychiatric & acceptability, and variation child-based worth. socioeconomic status, applicability of the program (M = 275 Mental Health Nursing. in outcome variables, which standardized test scores, 3.65, SD = .08), although they gave Oct2016, Vol. 23 Issue 8, will inform a larger study. Data collection: neighbourhood characteristics) low ratings for its novelty (M = 2.99, p489-501. 13p. Questionnaires. were selected, and then SD = .20). Among the four sessions, Design: A two-group, Phone and individual interviews. randomly assigned to either parents were most satisfied with the ?? Stepping stones repeated measures, quasi- the intervention (one fourth session, which addressed program rather than web? experimental study. Intervention group: elementary and two middle various strategies promoting parent– Parents assigned to the schools, plus half of the child relationships and presented Setting: Two elementary intervention group participated in online community participants) success stories shared by mothers. schools and four middle the 4-week Stepping Stone or AC (one elementary and two Regarding the specific strengths of schools from four cities in program, whereas those middle schools, plus half of the the intervention, parents reported Korea. assigned to the AC group online community participants) that it provided time for self- received a healthy diet groups. The attention control reflection and helped them Sample: intervention for 4 weeks. Parents (AC) group received the same understand their child’s perspective, Using cluster and assigned to the AC group were amount and duration of and they found the information about convenience sampling later invited to complete the education as the experimental mental health services useful. strategies. N= 214 Stepping Stone program, after group. Participants in the AC Regarding the intervention’s recruited. 131/intervention they had completed the 1-month group also experienced the shortcomings, parents reported that and 83/AC groups (baseline follow-up survey. same study procedure, the content on mental health issues survey) Received including recruitment and data was not specific enough for those intervention-60, AC – 54. Control group: collection procedure, to control who were currently struggling with Analysed intervention-47, The attention control (AC) group for the effects of the child’s mental health problems, and analysed AC-46. received the same amount and therapeutic relationship they requested the inclusion of more duration of education as the between researchers and practical parenting skills that were Selection: experimental group. Participants participants. applicable to daily parent–child Upon receiving approval in the AC group also 3. Yes interactions. At baseline, there were from the principals of experienced the same study 4. Yes, different scales used. no significant differences in selected schools, we procedure, including recruitment Besides watching the media demographic characteristics or recruited participants and data collection procedure, to files, parents were asked to outcome variables between the through parent orientation control for the effects of the complete 15-min intervention and AC groups. meetings and letter therapeutic relationship between questionnaires before After completing the 4-week invitations. We provided researchers and participants. beginning the first session Stepping Stone program, detailed information about (baseline), at the end of the participants in the intervention, the study and web-based Results: fourth session (posttest), and 1 compared to AC, group intervention for parents, Despite the random assignment month after the post-test (1- demonstrated preliminary evidence 276 including the purposes, strategy we used, group sizes month follow-up) of improved parental knowledge. expected commitment from varied because of differences to measure changes in the study Further, there were group participants, and detailed in the response rates. We were variables. differences in the level of knowledge procedure. Interested able to recruit parents from 5. Yes, adequately described. sustained 4 weeks after the post- parents were asked to diverse areas of the country with 6. Yes. test. submit an application to relatively low cost. There were 7. Yes. To analyse the Parents in the intervention group their child’s teacher or to 114 parents (60 and 54 in the interview data, two research also showed increased parental self- contact the research team intervention and AC groups, team members independently efficacy, parent–child members. We then respectively) who completed all coded the transcripts and communication, and satisfaction with contacted via phone four sessions of the program; identified themes that parent–child relationships, and or email each parent who however, only 47 from the appeared repeatedly. We then decreased parent–child conflict, applied, again provided intervention group and 46 from classified the data into three parental stress, and child-based information about the study, the AC group completed the 1- parts: strengths of the worth (see Table 4). The gaps and answered any month follow-up survey. programs, limitations of the between the two groups were questions. program or barriers to particularly large at the 1-month participation or remaining in follow-up for parent–child Inclusion criteria: the program and areas for communication, parent–child The target population was improvement. conflict, satisfaction with parent– parents of adolescents 8. The data were analysed with child relationships, and parental aged 11 to 16 years old, IBM SPSS version 21.0 and stress. Only the effect size of who were residing in Korea. STATA 14 (StataCorp 2015). parental knowledge was large (d = Parents who met the 0.60; 95% CI: 021–0.99); that of the following inclusion criteria Benefits: other outcome variables was very were invited to participate: The program could be used to small, ranging from 0.01 (95% CI: (1) had at least one child deliver interventions for parents _0.30 to 0.32, parental self-efficacy) aged 11 to 16 years old; (2) across diverse settings, to 0.13 (95% CI: _0.18 to 0.43, were currently living with including schools and satisfaction with parent–child the child; and (3) were able community mental health relationships). The completers were to understand Korean centers, if the intervention effect more educated (P ≤ .001) and had a is determined via a larger trial. higher level of parental knowledge Exclusion criteria: we believe that the benefits of (P = .004),. Specifically, we Not stated. web-based interventions could demonstrated that one of very few be maximized when culturally specific web-based disseminated in collaboration interventions for Korean parents 277 with health services, education addressing adolescents’ mental systems, and/or existing health is feasible, and identified community networks areas and issues to consider when implementing similar interventions. Parents who completed the program found it to be accessible, easy to understand, and appropriate for disseminating general information to large numbers of parents. In addition, the change in parental knowledge of adolescents’ development and mental health in the desired direction was observed. Limitations: Limitations of the study include non- equivalent sample sizes between the intervention and AC groups, which may have caused selection bias and generalizability issues. We monitored how many times each participant visited the study website and the amount of time they spent on each session, and added a function to prevent them from proceeding without completing each session. However, we were still not able to differentiate between participants who engaged fully, compared to shallowly, with the program content. Considering the low retention rate observed in this study, further studies are needed to examine the impact of high dropout 278 rates and the dose–response relationship in relation to web-based intervention. These factors might be one of the reasons for the inconsistent results that have been obtained regarding the effects of intervention programs involving technology. Another limitation to this study is the small sample size, particularly for non-random samples. Recommendations: this study also recommended recruiting participants based on existing therapeutic relationships between the researchers (or service providers) and parents. She also recommended utilizing web-based interventions as an educational tool in conjunction with self-help groups for parents. Besides using regular reminders, utilizing online communities and a social network approach is recommended for future web-based programs, in order to increase recruitment and retention rates. Bibliographic detail Methodology Outcomes & Intervention Critical appraisal Study findings Grading & Hierarchy 7. A pilot study using Aim: Outcomes: Joanna Briggs Institute (JBI) for Pre- and post-intervention well-being 5/5 electronic communication The aim of the study The purpose of this study was to quasi-experimental stool: cumulative scores did not ?C in home healthcare: was to explore the impact explore the utility of a nurse- 1. Yes. significantly differ (z = −1.207, p < 279 implications on parental that this form of established and nurse-managed 2. N.a. – no comparison .227). There was also no significant wellbeing and communication would have electronic communication on the 3. N.a difference between pre- and post- satisfaction caring for on parent’s self-reported impact of selfreported well-being 4. N.a parent well-being subset scores (z medically fragile children. well-being and satisfaction and satisfaction of parents of 5. Yes. Frequencies and =−1.006, p < .314) and family well- Haney T, Tufts KA. and to produce preliminary medically fragile and measures of central being subset scores (z = −1.348, p < Home Healthc Nurse. findings to the value of technologically dependent tendency were used to .178). Satisfaction scores also did 2012;30:216–24. conducting future research children cared for at home. describe the sample. The not differ between pre- and post- on the use of an e-mail PedsQL™ Family Impact intervention satisfaction scores (z = communication program to Research questions: and Satisfaction tools were −.631, p < .528). Although the study enhance caregiver well- RQ1: Do parents of medically selected to measure findings do not reflect significant being and satisfaction. fragile and technologically outcomes on parental self- quantitative differences in parental dependent children cared for reported well-being and self reported well-being or Method: at home report improved well- satisfaction. Both satisfaction, there was a 9-point Quasi-experimental one- being following the instruments have established increase in parental satisfaction. group pre- and post- implementation of a nurse- reliability; PedsQL™ Family This study demonstrates the intervention pilot study. established and nurse-managed Impact Module (α = 0.97) potential benefits of communicating, electronic communication? and PedsQL™ Satisfaction supporting, educating, and guiding Setting: RQ2: Do parents of medically Module (α = 0.90). families via electronic In a small pediatric home fragile and technologically 6. All 19 parents completed the communication. healthcare agency located dependent children cared for at post intervention instruments Exploration into the benefits of in a major metropolitan city home report improved and returned them via the different forms of electronic in the south-eastern United satisfaction following postal mail. See procedure. communication warrants further States. This agency the implementation of a nurse- 7. N.a. no comparison group. research. In conclusion, the home provides care to 46 established and nurse-managed 8. Yes. Nr 5. care nurse cannot change the families of children with electronic communication? 9. Yes.Wilcoxin T tests were unpredictable nature of parenting a multiple medical conditions. used to assess differences in medically fragile child. The nurse Data collection: pre- and post-interven- may, however, be able to provide Sample: Questionnaires. tion parental self-reported well- ongoing support and education via Purposive sampling took being and satisfaction different forms of electronic place. A total of 19 Intervention: communication. Therefore, participants were enrolled. Following enrollment the 12- contributing to improved parent well- Mean parental age was 36 week structured electronic being and satisfaction. with a range of 23 to 53 communication intervention years. The ill child’s mean began simultaneously for all 280 age was 9.17 years with a parents. The first e-mail sent to Limitations: range of 4 months to 23 parents outlined the guidelines Lessons Learned and Limitations years. for online communication. • Recruitment was difficult because Parents were reminded that e- of the busy nature of parenting a Inclusion criteria: mail communication was not to chronically ill child. Inclusion criteria for study be used for emergency • Invitation letters did not prove to be participation included purposes. an effective method. Phone calls (a) the ability to read and Over 12-weeks healthcare may have proved to be more write in English and education or parenting topics effective. (b) access to the Internet related to caring for a chronically • Early buy-in from the visiting nurse either in the form of e-mail ill child at home were sent from may have increased enrolment. or text messaging. the nurse to the parent’s • Pediatrics is a small segment of Recruitment took place over identified e-mail address at the home care, to achieve adequate a 2-month period. start of each week. IRB- sample size additional agencies approved topics were may need to be used. Exclusion criteria: preselected prior to the start of • The intervention should take place Not found. the study. While the weekly over a longer timeframe (6 months topics were standardized the e- to 1 year). This would allow time for mails were personalized to each the parent to develop a level of parent to encourage comfort with the nurse. This may communication and rapport with also adjust for negative life events the nurse. Parents were that may occur over the course of encouraged to e-mail questions, the study. comments, and concerns to the • Parents wanted to express nurse. The nurse responded themselves despite the forms being asynchronously to the parent e- quantitatively based. Future mails within 24 to 48 hours research should include Monday through Friday. opportunities to collect data that is qualitative in nature. Procedure: Pre-intervention data were collected from each parent at the time of enrolment, this included sociodemographic information, 281 parental self-reported well-being, and parental self-reported satisfaction. The intervention was then implemented over a 12-week period. Two weeks before the conclusion of the study, parents were reminded through e-mail that they would be mailed follow-up questionnaires. During the last week of the study parents were mailed the follow up PedsQL™ Family Impact and PedsQL™ Satisfaction questionnaires along with a self-addressed and stamped envelope to the nurse. All 19 parents completed the post intervention instruments and returned them via the postal mail. Qualitative articles Bibliographic detail Methodology Outcomes & Intervention Critical appraisal Study findings Grading & Hierarchy 8. Clinic Personnel, Purpose: Data collection: Note each step: Findings: D Facilitator, and Parent The purpose of this In-depth interviews: 1. The purpose clearly stated. Nine themes (six from individual 9/10 Perspectives of eHealth descriptive qualitative 9 semi-structured, face-to- 2. Qualitative methodology interviews and three from focus Familias Unidas in study was to examine the face interviews with appropriate. group). Separate table provided Primary Care. Molleda, feasibility and acceptability physicians, a nurse 3. Research design appropriate. with substantiating quotations. L., Bahamon, M., St. of implementing eHealth practitioner, clinic 4. Recruitment strategy 1. Establish the relevance of the George, S.M., Perrino, T, Familias Unidas in pediatric administrators, and appropriate to purpose. intervention to the setting and Estrada, Y., Herrera, primary care settings from the facilitators. Conducted a 5. Data collected addressed the population. D.C., Pantin, H. & Prado, perspectives of all those focus group with parents at research issue. 2. Engage clinical personnel. 282 G. 2017 involved in the pilot study the university medical 6. Relationship between 3. Minimize disruption to clinic (i.e., clinic personnel, campus. researcher and participants flow. Check background for facilitators, and parents). The implicitly and partially stated. 4. Improve collaboration and detail of the programme objectives were to (a) Focus group: 7. Ethical issues were training of clinic personnel and determine the acceptability of Example questions included: considered. the research team. delivering Familias Unidas How was your decision to 8. Data analysis was sufficiently 5. Secure administrative support via the Internet??, (b) identify participate influenced by the rigorous. and funding. potential barriers and health care setting where you 9. Findings clearly stated. 6. Provide intervention facilitators to family receive health care services? 10. Value of the research well participants and facilitators recruitment and intervention and Can you please motivated. with technical and clinical implementation in the describe your experiences support. primary care clinics, in the intervention? The 7. Promote the clinic as a trusted (c) collect recommendations focus group lasted 73 minutes setting for improving children’s on how to overcome barriers and was audio recorded and behavioral Health. and capitalize on strengths transcribed verbatim by a 8. Communicate the perceived of implementation, and (d) research assistant. Adapted benefits of the intervention. elicit suggestions related to semi structured interview 9. Highlight the flexibility and sustainability of the guide; field notes. convenience of eHealth intervention in primary care. format. Data analysis: Recommendations: Design: Descriptive General inductive approach include (a) establishing the qualitative study First author – Read all relevance of the intervention, (b) transcripts; created 2 initial engaging clinic personnel, (c) Setting: Individual interviews codebooks; upper level minimizing disruption to clinic flow, with clinic personnel and categories derived from study (d) improving collaboration and facilitators – one of the two objectives and lower-level training of clinic personnel and pediatric primary care clinics directly from participants research team, (e) securing or the university medical responses administrative support and funding, campus; Focus group with Second author – Reviewed (f) providing intervention facilitators parents – university medical transcripts and codebooks and participants with technical and campus before coding clinical support, (g) promoting the Both authors – independently clinic as a trusted setting, (h) Sample: Purposive sampling coded transcripts, discussed communicating intervention changes and codes, reached benefits, and (i) highlighting the 283 Inclusion criteria: consensus on discrepant flexibility of the eHealth format. For From two pediatric primary ratings and organise the intervention itself, it is care clinics involved in the commonly endorsed themes; imperative that the actual delivery eHealth Familias Unidas pilot organised by code into Excel of the intervention complements the study tables; frequency of themes clinic’s ongoing duties and engages indicated saturation. the families. Thus, the convenience Exclusion criteria: Consistency ratings were of the eHealth format, which Third clinic was not included calculated. External reviewers streamlines intervention delivery to in the qualitative study, checked accuracy. occur outside the clinic, is a selling because the third clinic’s point, not only for the clinic, but also cohort had not yet begun The strategies and for the parents who prefer high recommendations put forth flexibility and accessibility of the from the participants are an intervention. indication that not only is it possible to integrate and Recommendations for the Familias implement an eHealth Unidas team; practical intervention in a primary care considerations and concrete steps setting, but it is also for researchers. Future research to acceptable and needed. consider integration and intersection of quantitative and qualitative data collection and analysis to maximise efficiency of intervention implementation and dissemination in primary care, particularly as it affects patient outcomes. Limitations: Small number of participants due to small population; involvement of project coordinator as a researcher who conducted individual interviews and led analysis. 284 Bibliographic detail Methodology Outcomes & Intervention Critical appraisal Study findings Grading & Hierarchy 9. eHealth Familias Unidas: Purpose: Data collection: Note each step: Findings: D Pilot Study of an Internet To describe the Internet Focus groups/ interviews: 1. The purpose clearly stated. Two general themes: 9/10 Adaptation of an adaptation of an evidenced- 8 Focus groups and 6 2. Qualitative methodology  Parents provided positive Evidence-Based Family based intervention for individual interviews with 29 appropriate. feedback regarding the e-Parent Intervention to Reduce Hispanic families, eHealth parents. 3. Research design Group Sessions. Drug Use and Sexual Risk Familias Unidas, and Overall question: appropriate.  Lessons learned as a result of Behaviors Among explore whether an Internet- Is an internet adaptation of 4. Recruitment strategy being a part of the intervention, Hispanic Adolescents. based format is feasible and the Familias Unidas appropriate to purpose. i.e. (1) effective parent- Estrada, Y., Molleda, L., acceptable to Hispanic intervention, eHealth Familias 5. Data collected addressed adolescent communication; (2) Murray, A., Drumhiller, K., families. Unidas, feasible and the research issue. active parental attention and Tapia, M., Sardinas, K., acceptable to Hispanic 6. Relationship between involvement in adolescent’s life; Rosen, A., Pantin, H., Design: Qualitative study families? researcher and participants (3) importance of friends; and (4) Perrino, T., Sutton, M., with quantitative component Probing questions: not specified. importance of communication Cano, M.A., Dorcius, D., – session completion rates. “What aspects/things in this 7. Ethical issues were about sex. Muhamad, J.W. & Prado, G. session did you find you can considered. 2017 Setting: Multiple middle use and that could be helpful 8. Data analysis was sufficiently Recommendations: schools relatively close to or were not helpful?”, “What rigorous. Modifications were made to the e- where the families lived and were some of your reactions 9. Findings clearly stated. parent group sessions based on the at the University of Miami to the telenovela?”, and “Are 10. Value of the research well participant feedback. offices. there things you would motivated. change that would make the Limitations: Sample: Purposive intervention more appealing 1. Given that this a feasibility and sampling – 29 parents. to you?” acceptability study, it is not Additional questions related possible to make any Inclusion criteria: to technological issues conclusions regarding the Parents who had received parents may have efficacy of the eHealth Familias the eHealth intervention. experienced, comments on Unidas intervention. Currently, the interactive exercises, and there is an ongoing randomized Exclusion criteria: whether weekly reminders trial with eHealth Familias Not mentioned. from the facilitators to watch Unidas that will determine the sessions were whether the intervention has an reasonable. impact on family functioning, as 285 Duration: well as youth health risk 30-90 minutes behaviors. Data capturing: 2. Sample for this study from a Audiorecorded and single geographic area, Miami- transcribed. Transcripts Dade County – not uploaded into NVivo and representative of Hispanics in structural codes were applied the United States. to the data to label each focus 3. An inherent self-selection bias group guide question and with participants who decide to participants’ responses. participate in the focus groups; Further, a selection bias also Data analysis: exists with our eligibility criteria, Two qualitative data analysts which required families to have thoroughly read each Internet access, therefore, transcript and by structural potentially excluding families code to create an emergent from low socioeconomic status. data-driven code list. They However, this eligibility criterion then discussed any was necessary to ascertain that discrepancies and created a families would be able to access preliminary content codebook. the intervention. To ensure coding consistency, analysts independently coded two transcripts and assessed inter-coder agreement using Kappa scores. Codes with a Kappa score less than 0.80 were reviewed and discussed until consensus was reached. Text segments were recoded and the codebook was finalized. Each analyst then coded six of the remaining twelve transcripts. Salient and co-occurring concepts were 286 identified and organized into thematic categories. 287 ADDENDUM H INFORMATION LEAFLET FOR PARTICIPATING IN THE VALIDATION WORKSHOP PHASE 3 288 INFORMATION LEAFLET: VALIDATION WORKSHOP PARTICIPANT Study title: An mHealth communication framework for caregivers of adolescents with mental health issues (HSREC nr. UFS-HSD2017/0349) Researcher: Mrs. Ronelle Jansen Mobile number: 0825544731 I, Ronelle Jansen, am doing research on the development of an mHealth communication framework for caregivers of adolescent with mental health issues in a rural area in South Africa. This research is towards my PhD. A multiple method design will be implemented and a three-phased approach will be followed. In phase 1, the researcher conducted the Mmogo-method® in two towns from the Kopanong Municipality, Xhariep District in the Free State province. The researcher used purposive sampling of caregivers of adolescents with mental health issues in Trompsburg and Springfontein. Phase 2 was a systematic review. During this phase, the researcher looked at relevant literature for evidence-based articles about strengthening of positive behaviour for caregivers of adolescents with mental health issues using mHealth communication interventions. This research sought to understand how an mHealth framework could be used by rural South African caregivers of adolescents who have mental health issues. Such a framework may strengthen the caregiver’s behaviour in a more positive way when caring for the adolescent with a mental health issue. The researcher used the data of phase 1 and 2 to develop a draft mHealth communication framework. Phase 3 consists of a research workshop that will validate the draft framework. This workshop will form part of the process to enhance the integrity of the development of a mHealth communication framework. The study promotor, an expert in the Theory of Change Logic model as part of a Complex intervention, will facilitate the validation workshop. You are invited to form part of this workshop as a valuable member with certain expertise. There are no unforeseeable risks being involved in the study. There are no direct benefits of you being in the study. Your participation is voluntary and you may discontinue participation at any time without penalty or loss of benefits. There are no costs involved in the participation of this study. All efforts will be made to keep personal information confidential. Absolute confidentiality cannot be guaranteed because of the group discussions. Results of the research will be published but no personal information will appear on any document. Organisations that may inspect and/or copy the research records for quality assurance and data analysis include the Health Sciences Research Ethics Committee (HSREC). I will be happy to answer any queries regarding this study and look forward to your participation. Yours truly_________________ Mrs. Ronelle Jansen Cell: 0825544731 jansenro@ufs.ac.za 289 INFORMED CONSENT: VALIDATION WORKSHOP PARTICIPANT You have been asked to participate in a research study. Mrs Ronelle Jansen has informed you about the study. You have been informed about any available compensation or counselling if emotional harm occurs as a result of study-related procedures; You may contact Mrs Ronelle Jansen at 0825544731 any time if you have questions about the research or if you are injured as a result of the research. You may contact the Secretariat of the Health Sciences Research Ethics Committee, UFS at telephone number, 051 401 7795, if you have questions about your rights as a research participant. Your participation in this research is voluntary, and you will not be penalized or lose benefits if you refuse to participate or decide to terminate participation. If you agree to participate, you will be given a signed copy of this document as well as the participant information sheet, which is a written summary of the research. The research study, including the above information has been verbally described to me. I understand what my involvement in the study means and I voluntarily agree to participate. _____________________ __________________ Signature of Participant Date _____________________ __________________ Signature of Witness Date (Where applicable) _____________________ __________________ Signature of Interpreter Date (Where applicable) 290 ADDENDUM I DRAFT FRAMEWORKS PHASE 3 291 5.. Influential factors 1. Assumptions 4. Desired results resultsDesDesireresultsried resultsD Barriers Support:  mHealth will support rural  Create structural support: network of people to caregivers support caregivers (HCP, co-carers, church and  Negative perceptions about social media  mHealth technology is flexible, convenient,  Involvement of DoH is essential school) • Unreliable mobile phones and networks inexpensive, available and effective to mHealth inititiatives  Implement culturally acceptable initiatives to e.g. electricity  mHealth technology can be tailored to individual • Limited internet access support caregivers preferences • Limited human interaction with mHealth  Improve caregivers’ access to information, advice  mHealth communication less judgemental, • High cost → data & phone calls pressured, lectured, shamed or frightened to and training • Limited skills to operate mobile technology and functions caregivers 2. Problem  Recognise caregiver role and responsibilities • Frequent change of caregivers’ phone  mHealth communication occur in private and  Offer caregivers concrete strategies to manage numbers comfort of own homes ↓ stigma Rural caregivers of adolescents daily life and coping skills • Phone sharing among families  mHealth able to “save and store” information to be with MH issues do not have  Influence and increase caregivers beliefs, attitude, • Limited language skills retrieved later adequate support. • Poor knowledge re mHealth services knowledge, self-efficacy positively towards  Saves time → both individual (travel) and HCP  Receive non-tailored messages (pre-record/written messages) adolescent with MH issues •Distrust of technology by some caregivers  Improves communication between all support  Improve caregivers ability to recognise MH issues •Unable to appraise quality of information structures •Challenges inherent to SMS/MMS/IVR among adolescents  Needs a very basic, low-cost phones for SMS 3. Community needs accessibility and usability  Promote help-seeking behaviour among  High penetration of mobile phones in Africa •Rapid rate of technology development needsmunnity needs  Involves all policy and community stakeholders •Policy constraints  Psychosocial & emotional needs of caregivers  Variety of mobile phone functions available e.g. caregivers  Mobilize caregivers as change agents and •Complex information via IVR - more difficult to SMS, MMS (video & audio), phone calls listen than read  Caregivers’ need information, advocates for MH  Assist with staff shortages - minimal human •Limited message length (160 characters) per training and education when caring  Facilitate health dialogue opportunities resonating resource input needed SMS for the adolescent with MH issues with caregivers •Concern that mHealth will replace healthcare  Scalability to deliver information simultaneously to services large number of people in hard to reach areas in  Caregivers need clarification on  Improve caregivers’ decision-making and caregiving roles and responsibilities •Telephone “coaching” not always possible in caregivers own language management skills re adolescent care large group settings  Provides interaction and connection through two-  Need for coping strategies: control,  Increase caregivers’ awareness about available  Need skilled workforce to support, maintain way communication self-efficacy, problem solving, stress mHealth and MH services and sustain mHealth services.  Mobile technology: becomes cheaper every year management skills  mHealth is an enabler of change in the health care  Acknowledge caregiver well-being  Caregivers feel isolated and sector  Align mHealth communication for caregivers of experience stigmatization in the  Voice, video and phone call functioning ideal for adolescents with national strategies and systems community illiterate caregivers  Access to quality mental healthcare  Message frequency: improve relationship between  Caregivers needs assistance with recipient and sender. 292 family relationships 6. Evidence-based  Caregivers need guidance strategies regarding concerns about  SMS adolescent’s future  MMS  Call services 293 ADDENDUM J FINAL FRAMEWORK PHASE 3 294