THE PERCEIVED BURDEN OF CARE FOR CAREGIVERS OF POST
DISCHARGED CVA PATIENTS WITH FUNCTIONAL IMPAIRMENTS
AT A PRIVATE REHABILITATION UNIT IN BLOEMFONTEIN
by
MRS. LYNDALL SERFONTEIN
Submitted in fulfilment of the requirements in respect of the Master’s degree
MAGISTER IN OCCUPATIONAL THERAPY
In the Department of Occupational Therapy
In the Faculty of Health Sciences
At the
UNIVERSITY OF THE FREE STATE
SUPERVISORS:
MRS. MARIETA VISSER
MRS. MIA VAN SCHALKWYK
BIOSTATISTICIAN:
MR. CORNEL VAN ROOYEN
31 August 2018
1
TABLE OF CONTENTS
DECLARATION 3
DISCLOSURE 4
ACKNOWLEDGEMENTS 5
LIST OF APPENDICES 6
LIST OF ACRONYMS AND ABBREVIATIONS 7
LIST OF TABLES 8
1. INTRODUCTION AND BACKGROUND TO THE STUDY 9
2. ARTICLE 1 (LITERATURE REVIEW) 11
2.1 ABSTRACT 11
2.2 INTRODUCTION 12
2.3 CURRENTLY AVAILABLE REHABILITATION SERVICES IN SOUTH AFRICA FOR THE CVA
SURVIVOR 13
2.3.1 Statistics on CVAs in South Africa 13
2.3.2 Impact of CVA on the Survivor 14
2.3.3 Importance of Rehabilitation for the Survivor of CVA 15
2.3.4 Rehabilitation for Patients with CVA in another Country In Contrast With What Is Offered in South
Africa 17
2.3.5 Funding of Rehabilitation in South Africa 18
2.3.6 Caregiving and Support Post Discharge 19
2.4 THE OCCUPATION OF CAREGIVING 20
2.4.1 Informal Caregivers 20
2.4.2 Caregiving as Occupation/Co-Occupation 21
2.4.3 Implications and Burden of Care Experienced by Caregivers 23
2.4.3.1 Demographic Factors 23
2.4.3.2 Physical and Psycho-Social Factors 24
2.4.3.3 Activity Profiles 25
2.5 DISCUSSION 26
2.6 RECOMMENDATIONS 27
2.6.1 Therapeutic Intervention for the Survivor of CVA 27
2.6.2 Family and Caregiver Training 27
2.6.3 Outpatient Therapy 29
2.7 CONCLUSION 29
2.8 REFERENCES 31
3. ARTICLE 2 (SCIENTIFIC ARTICLE) 36
3.1 ABSTRACT 36
3.2 INTRODUCTION AND LITERATURE SURVEY 37
3.3 METHODS 39
3.3.1 Study Design 39
2
3.3.2 Population and Sampling 39
3.3.3 Data Collection 41
3.3.4 Measuring Instruments 42
3.3.5 Reliability and Validity 43
3.3.6 Ethical Aspects 44
3.4 DATA ANALYSIS 44
3.5 RESULTS 44
3.5.1 Demographic Information 44
3.5.2 Patients’ Functional Level Upon and Post Discharge 45
3.5.3 Therapy Received 47
3.5.4 Environmental Factors 47
3.5.5 Caregivers’ Occupations, Performance Patterns, and Well-Being 47
3.5.6 Caregiver Strain 48
3.5.6.1 Financial 49
3.5.6.2 Physical 49
3.5.6.3 Psychological 49
3.5.6.4 Social 49
3.5.6.5 Personal 49
3.6 DISCUSSION 50
3.6.1 Demographic Information 50
3.6.2 Patients’ Functional Level Upon and Post Discharge 51
3.6.3 Therapy Received 52
3.6.4 Environmental Factors 52
3.6.5 Caregivers’ Occupation, Performance Patterns, and Well-Being 52
3.6.6 Caregiver Strain 53
3.7 LIMITATIONS 53
3.8 RECOMMENDATIONS 54
3.9 CONCLUSION 55
3.10 REFERENCES 56
4 CONCLUDING NOTES ON THE STUDY 60
APPENDIX A: INFORMATION DOCUMENT AND INFORMED CONSENT FORM FOR PARTICIPANTS i
APPENDIX B: INFORMATION DOCUMENT AND PERMISSION LETTERS FROM THE HOSPITAL
MANAGER vii
APPENDIX C: NON-STANDARDISED QUESTIONNAIRE xii
APPENDIX D: BACKGROUND INFORMATION DOCUMENT xvii
APPENDIX E: STANDARDISED QUESTIONNAIRE – MODIFIED CAREGIVER STRAIN INDEX xix
APPENDIX F: ETHICAL CLEARANCE DOCUMENT xxiii
APPENDIX G: PROOF OF LANGUAGE EDITING xxiv
APPENDIX H: PROOF OF PLAGIARISM CHECK xxv
3
DECLARATION
I, Lyndall Serfontein, declare that the Master’s Degree interrelated, publishable articles that I herewith submit
for the Master’s Degree qualification in Occupational Therapy 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.
Lyndall Serfontein
Student number: 2005082652
L. Serfontein 31 August 2018
Signature Date
4
DISCLOSURE
The researcher received a bursary for part of her studies from the inpatient rehabilitation unit where she is
employed and where this study was conducted, as well as from the University of the Free State where she
is registered as a postgraduate student. However, capturing of the data were completely objective and the
data analysis were done by the Biostatistics department at the University of the Free State.
5
ACKNOWLEDGEMENTS
To my heavenly Father, thank you for giving me the strength and courage to complete this study, and for
opening doors for me, enabling me to successfully complete my dissertation.
To my father, Dr Walter Derbyshire, thank you for inspiring me to be inquisitive and to strive for excellence.
To my mother, Sandra Derbyshire, and husband, Jan-Hendrik Serfontein, thank you for your love and
support throughout my studies.
To my study leaders, Marieta Visser and Mia van Schalkwyk, thank you for your valuable guidance.
To all the participants, thank you for sharing your stories with me.
6
LIST OF APPENDICES
Appendix A: Information document and informed consent form for participants
Appendix B: Information document and permission letters from authorities (Hospital manager)
Appendix C: Non-standardised questionnaire
Appendix D: Background information document
Appendix E: Standardised questionnaire – Modified Caregiver Strain Index
Appendix F: Ethical clearance document
Appendix G: Proof of language editing done
Appendix H: Proof of Plagiarism Check
7
LIST OF ACRONYMS AND ABBREVIATIONS
Acronym Definition
CSI Caregiver Strain Index
CVA Cerebrovascular accident
FIM Functional Independence Measure
MCSI Modified Caregiver Strain Index
RSA South Africa
8
LIST OF TABLES
ARTICLE 1
Table I: Rehabilitation outcome levels according to Landrum, Schmidt, and McClean (cited by Hassan et
al., 2012). 16
ARTICLE 2
Table I: Caregiver and patient demographic information 44
Table II: FIM rating levels and the expected hours of care needed (Uniform Data System for Medical
Rehabilitation 2012). Adapted by L. Serfontein 46
Table III: Answers provided by caregivers in the Modified Caregiver Strain Index 50
9
1. INTRODUCTION AND BACKGROUND TO THE STUDY
Cerebrovascular accidents (CVAs), or strokes, are a debilitating condition which causes international
concern. Throughout all rehabilitation outcome levels, therapeutic intervention plays a vital role in
recovery, starting in the acute hospital and continuing through inpatient rehabilitation as well as post
discharge. Unfortunately, not all patients have access to all levels of rehabilitation and healthcare in South
Africa. Both public as well private sector healthcare facilities fail to ensure optimal functional recovery for
all CVA survivors. More demands are therefore placed on family members and informal caregivers to take
on the caregiving of these patients, as well as to re-establish CVA survivors’ community integration and
productive activity, which often results in a high burden of care. Caregivers experience challenges on many
levels and does not always have the necessary support systems to assist them. These challenges can prevent
them from participating in occupations that are meaningful to them. Patients’ needs are often placed before
their own, resulting in a high burden of care and influencing caregivers’ health and well-being.
Greater focus should thus be placed on aspects such as caregiver training, structured support, home visits
to assess accessibility, outpatient rehabilitation services, home based caregiving services, and support
groups post discharge. However, such support structures are not always available everywhere in South
Africa (RSA) and are not affordable to all patients. Caregiving thus becomes the unplanned occupation of
family members of patients with CVA, and rehabilitation needs to prepare family members/caregivers for
their new occupation as caregivers. A survey of extant literature shows a lacuna in terms of available
research conducted regarding the co-occupation of caregiving, specifically for patients with CVA in the
South African context. Furthermore, there is a distinct lack of studies unique to the South African context
regarding determining the burden of care post discharge from a private, inpatient rehabilitation setting.
Finally, an exploration of a possible gap between private inpatient rehabilitation and discharge is required,
as inpatient rehabilitation does not necessarily address aspects such as community reintegration and
productive activity, which can result in increased burden of care for caregivers, if no patient follow up take
place post discharge.
This study reports on factors associated with burden of care as experienced by caregivers of people with
functional impairments due to a CVA, after their discharge from a private rehabilitation unit in
Bloemfontein. This dissertation is structured as two publishable articles. These articles have been prepared
for submission to the South African Journal of Occupational Therapy, and the journals’ author guidelines
(including the Vancouver referencing system) have therefore been followed in the preparation of both
articles. The journal was deemed appropriate as a first choice for submission of this content, in view of it’s
scope to provide contributions related to service delivery in Africa. The articles have not yet been submitted
for reviews to this, or any other journal. For examination purposes, the articles are more elaborate than what
10
is usually allowed in the guidelines of this journal and it will be shortened and prepared for publication after
the examination process.
The first article, a literature review, discusses caregiving as the unplanned occupation experienced by many
caregivers of patients with CVA with functional impairments in South Africa in terms of the impact of
CVA on survivors, the importance of rehabilitation for the survivor of CVA, funding of rehabilitation, as
well as caregiving and support structures. It further clarifies the occupation and co-occupation of
caregiving, as well as the implications of caregiving, such as burden of care experienced by informal
caregivers. This is followed by a discussion and recommendations for clinical practice, with the emphasis
on caregiver training. The second article reports on a quantitative, descriptive study, focussed on
determining the perceived burden of care for caregivers of post discharged patients with CVA with
functional impairments at a private rehabilitation unit in Bloemfontein. Telephonic follow-ups were done
with caregivers of patients with CVA post discharge in order to determine the burden of care experienced
as well as contributing factors. The article highlights the benefits of inpatient rehabilitation (as most patients
need minimal assistance upon discharge), but also emphasises the gap between inpatient rehabilitation and
discharge, as caregivers still experience a minimal to moderate degree of burden of care after discharge.
The article further discusses aspects which caregivers report as contributions to their burden of care at two
months after discharge, including financial, physical, psychological, social, and personal aspects. It further
highlights how the role and occupations of caregivers relate to their perceived burden of care.
In conclusion, this study highlights the need of establishing guidelines for inpatient rehabilitation units,
medical schemes, as well as outpatient therapy services in order to prevent/reduce burden of care within
the private inpatient rehabilitation setup, as well as post discharge, through incorporating the necessary
programmes and funding in order to overcome the gap between inpatient rehabilitation and discharge.
11
2. ARTICLE 1 (LITERATURE REVIEW)
Title of Article (Presented as a Literature Review)
Caregiving as an Occupation in the Context of Stroke Rehabilitation in South Africa
2.1 ABSTRACT
Recent surveys show an alarming increase in the number of individuals suffering from strokes annually,
resulting in functional impairments. Comprehensive rehabilitation is crucial in order to enhance patients’
level of independence in daily activities and to facilitate community integration. Unfortunately,
rehabilitation services in South Africa are hampered by several factors, leaving many patients without the
opportunity for comprehensive rehabilitation. This place a higher burden of care on informal caregivers and
family members, who are often forced to take up the unplanned occupation as caregivers. Not being
adequately prepared for this new role results in occupational loss and unbalanced activity profiles.
Caregiver education, home-based caregiving services, support groups, and therapeutic home visits should,
therefore, take priority. Therapeutic intervention throughout all rehabilitation outcome levels is advised in
order to assist with the transition between the rehabilitation and community reintegration phase of patients
with strokes, in order to ensure that they will be as independent as possible in their daily occupations and
decrease the burden on caregivers. This literature review aims to provide a background of the current
rehabilitation services in South Africa for persons who suffered strokes, the occupation of caregiving,
caregivers’ burden of care, as well as recommendations for clinical practice.
Key words: Strokes, Caregivers, Occupation of Caregiving, Burden of Care, Rehabilitation, South Africa
12
2.2 INTRODUCTION
The debilitating condition Cerebral Vascular Accident (CVA), or stroke, is suffered by more or less 75 000
people in South Africa (RSA) annually3-5. Insufficient and ineffective public health systems often contribute
to the causes of CVAs, since lower socio-economic groups are often more exposed to risk factors, being
dependent on public health systems for access to preventative treatment1. In addition, insufficient public
health systems result in patients with CVA being discharged from hospital too soon, due to a shortage of
staff and resources. A lack of stroke-specific policies and protocols, a limited number of rehabilitation units,
and a lack of specialised care for patients with CVA, further contribute to patients not receiving optimal
care, resulting in patients not becoming as functional and independent as possible2. As a result, the majority
of CVA survivors often experience permanent impairment and need assistance from others in performing
daily activities3-5.
Rehabilitation plays a vital role in hospital6 as well as post discharge (such as outpatient therapy and home-
based care)7, in order to allow the person who suffered a CVA optimal independence in daily activities,
community integration, and a return to productive activities (i.e. paid work) for financial independence6.
Successful rehabilitation, therefore, needs to allow for 0: physiological instability, I: physiological stability,
II: physiological maintenance, III: residential integration, IV: community integration and V: productive
activity. These aspects are described in Table I as the six levels (Levels 0 - V) of rehabilitation by Landrum,
Schmidt, and McClean (cited by Hassan, C8).
In South Africa, pockets of rehabilitation for survivors of CVA are available in both the public and private
sectors. In general, however, the provision of comprehensive and sufficient rehabilitation services8 by the
healthcare system in South Africa is hampered by a number of factors. These include a great shortage of
medical personnel1, limited access to in-patient rehabilitation services6, as well as insufficient finances for
and transport to outpatient therapy4. In private medical facilities rehabilitation services is hindered in that
medical schemes only fund a limited number of therapy sessions9, rendering patients incapable of
completing all levels of rehabilitation. Patients are often discharged from the inpatient rehabilitation unit
when they have reached a reasonably functional status, with referral to, but without continued outpatient
therapy and rehabilitation services in the community8. The transition from hospital to home is therefore
often problematic to the patient with CVA and their family/caregivers, as they might be medically stable,
but are not yet independent. Patients are mostly discharged from acute hospitals when they have reached
rehabilitation levels I - II (physiological stability or physiological maintenance). Those who are admitted
to inpatient rehabilitation units mostly reach level III (residential integration). Community-based
rehabilitation, including outpatient therapy, is needed to reach levels IV and V (community integration and
productive activity)8.
13
Although employed caregivers can be provided by professional caregiver associations in South Africa, their
services are not available in all South African provinces and towns, and are unaffordable to most patients
in need of care6. It is the author’s experience that certain private medical schemes have programmes that
allow patients to qualify for a professional caregiver for up to two weeks after their discharge, although
families are still responsible for their own caregiving after that. For patients discharged from public
hospitals, there are, however, no such services. Consequently, healthcare systems rely on informal/unpaid
caregivers of patients with CVA as the “extension” of rehabilitation care delivery10. An increased demand
is placed on family members and/or caregivers who are often forced to take up the unforeseen role as
caregiver for the patient with CVA11.
Caregiving thus often becomes the “unplanned” occupation, a full-time job and challenge to family
members of patients with CVA12. This role transition from family member to caregiver and the preparation
for their new occupation has, therefore, become increasingly important in the broader, comprehensive
rehabilitation of patients with CVA. Although much has been written about caregiving and burden of care,
limited research is available on the occupation (also referred to as co-occupation) of caregiving for patients
with CVA in the South African context, specifically from an occupational therapy point of view.
In this literature review, the researcher argues that the currently available rehabilitation services in South
Africa for the survivor of CVA are not sufficient, creating a great need for caregiving. The experience of
being a caregiver of a survivor of CVA is viewed from an occupational perspective, referring to the
implications of caregiving on the caregiver, as well as burden of care. The researcher concludes with
recommendations for clinical practice, acknowledging the caregiver’s essential and valuable role in the
rehabilitation of the survivor of CVA.
2.3 CURRENTLY AVAILABLE REHABILITATION SERVICES IN SOUTH AFRICA FOR THE
CVA SURVIVOR
2.3.1 Statistics on CVAs in South Africa
Cerebrovascular accidents (CVAs) are one of the four main non-communicable diseases, including
cardiovascular syndromes such as CVAs, diabetes, cancers, and chronic respiratory conditions13. Countries
with low or middle socio-economic conditions, such as South Africa, are mostly affected by non-
communicable diseases. Non-communicable diseases account for 82% of the 16 million annual deaths
worldwide1. Forty percent of CVAs which occurred in Africa in 2005 were suffered by persons under the
14
age of 70 years14. Survivors of CVA seem to mostly be adults over 45 years of age15. Women seem to be
more affected by CVAs than their male counterparts7.
According to Statistics SA, 29% of all deaths in the country are due to non-communicable diseases, of
which 18% alone are caused by cardiovascular diseases such as CVAs16. The survival rate of CVA victims
in South Africa is estimated at 243 per 100 0004. This low survival rate results in CVA being the second
largest leading cause of mortality in the country5.
2.3.2 Impact of CVA on the Survivor
CVA survivors often experience a variety of cognitive, physical and functional impairments, depending on
the severity and area of the brain affected. A full recovery is usually likely in only 45% of said survivors17.
Most patients need assistance with their daily activities after a CVA and might need assistance from their
support systems3,4. Patients do, however, show most progress and recovery within three to six months after
their CVA18. Early intervention is thus crucial in order to optimise functional outcomes of CVA survivors.
Commonly affected cognitive abilities include abstract reasoning, planning, problem-solving skills, visual
perceptual skills such as visual-motor integration, spatial relations, and sequencing, concentration, memory,
basic mathematics, following of instructions, as well as constructional abilities19. Impaired cognition could
further be negatively influenced by visual impairments. A study by Cawood, Visagie, and Mji (2016)
indicates that 66% of CVA survivors exhibited progressive visual impairments, 8% suffered from
hemianopia, and 6% experienced double vision3. Cognitive abilities as well as emotional well-being further
have a tremendous influence on patients’ ability to optimally participate in activities of daily living (such
as social activities, managing children or a family, returning to work, and performing basic calculations
needed in order to budget or shop for groceries), even if physical impairments are limited3.
Another impairment often experienced by a significant number of patients who suffered a CVA includes
incontinence of bladder and/or bowels3,7, which have a negative influence on their functional
independence7.
Consequences of CVA are further seen in functional impairments with regard to personal independence
tasks, motor skills such as gait or stair climbing, as well as communication, which again can result in
impaired social interaction, ability to perform household tasks, recreation, and ability to return to work3,4.
15
Applications for disability grants can also be impacted by impaired cognition, due to patients with cognitive
impairments struggling to negotiate the process of applying for a disability grant. Moreover, patients might
not be able to qualify for a disability grant, as the magnitude and impact of cognitive impairments are not
always obvious3. Without the support of disability grants, an even higher financial burden is placed on
patients’ caregivers to take care of them.
It is therefore evident that CVA is a complex and potentially debilitating condition, often leaving patients
to experience permanent functional impairments. Rehabilitation through all the rehabilitation levels are thus
vital in order to increase their quality of life.
2.3.3 Importance of Rehabilitation for the Survivor of CVA
Rehabilitation is crucial in order to enhance patients’ level of independence in their daily activities, facilitate
community integration, as well as the process of returning to work and being more financially independent6.
It is important to refer patients for rehabilitation as soon as possible in order for therapy to be as efficient
as possible. Early intervention is crucial for ensuring the best possible functional outcomes and for reducing
the possibility of complications arising from aspects such as abnormal movement patterns16. Inadequate
rehabilitation following a CVA could lead to higher levels of dependence in activities of daily living,
increased disability rates, and even higher mortality rates6, resulting in a higher burden on especially older
caregivers, which in turn will place a higher burden on healthcare services in South Africa20.
The Occupational Therapy Association of South Africa’s position paper on rehabilitation21 supports the fact
that rehabilitation needs to empower persons with functional disabilities to become independent, be part of
a community, and participate in work. Early intervention in a multi-disciplinary setup is essential in order
to limit disability and enable persons to return to their premorbid level of function. It fills the gap between
medical management and community reintegration, ensuring quality of life. Apart from the right to access
medical care, patients also have the right, from an occupational therapy point of view, to engage in activities
in which they find purpose. They should be enabled to participate in their communities and reach their
maximum potential. If patients are unable to participate in activities which are meaningful to them, either
due to a medical condition resulting in disability or due to environmental factors which limits participation,
rehabilitation aims to assist patients in taking up novel, meaningful activities. Rehabilitation should
continue after discharge in various environments, such as the workplace, where appropriate employment
and adaptations are ensured, while taking mental and/or physical disability into account. Therapy should
also focus on the necessary adaptations in the home environment, ensuring accessibility, as well as
community reintegration where social interaction can take place21.
16
As described so far, the consequences of a CVA are vast, and comprehensive rehabilitation is required.
Landrum, Schmidt and McClean (cited by Hassan et al.8) describe rehabilitation as a process consisting of
six levels through which a patient must progress in order to successfully complete their rehabilitation. Table
I indicates the rehabilitation outcome levels according to Landrum, Schmidt and McClean (cited by Hassan
et al.8) through which a patient must progress in order to experience successful rehabilitation:
Table I: Rehabilitation Outcome Levels according to Landrum, Schmidt, and McClean (cited by
Hassan, et al.8)
LEVEL DESCRIPTION TASKS THAT SHOULD BE MASTERED TO
ACHIEVE THE LEVEL
Level 0: Physiologic Acute diagnostic and medical issues are Directly following a health incident such as a
instability not addressed and managed stroke
Level I: Physiologic All major acute diagnostic and medical Diagnosis made
stability issues are appropriately addressed and Treatment plans decided on and implemented,
managed e.g. hypertension controlled through
medication
Level II: Physiologic Achievement of basic rehabilitation Client and family educated and trained
maintenance outcomes necessary to preserve long-term Rehabilitation and long-term management
physiological health plans in place
Strategies to prevent secondary complications
in place:
o Bladder and bowel
o Diet, swallowing and aspiration
o Prevention of chest infections Pressure
sore prevention
o Prevention of contractures
o Emotional support
o Pain management
o Limited physical and cognitive outcomes,
such as mobility and communication can
be achieved, but are not the focus of this
level
Level III: Residential Achievement of status where the person Self-care tasks performed
integration can function reasonably and safely in a Mobile in and around dwelling
residential setting Effective general communication system
Safe in-home activities, such as self-care, can
be performed by another person, but must be
directed by the client
Level IV: Community Achievement of an appropriate level of Manage personal affairs and finances
integration function within the person’s community, Socially competent
i.e. participating in social activities such as Community mobility
17
shopping, church, and sport according to Complex home-making abilities
individual needs Self-directed health management
Level V: Productive Work at a competitive level within Environment, disabilities, and job
activity physical, functional, and/or cognitive requirements play a role
capabilities appropriate to life stage and Work & skills assessment
interests. This can be vocational, Vocational training
avocational, or educational Employer education
Reasonable accommodations
Note that at all levels, tasks can be performed by a caregiver, but all must be client-directed
For successful rehabilitation to take place, it is recommended that patients should progress through all six
rehabilitation levels (levels 0 - V), up to productive activity. However, patients are mostly discharged from
acute hospitals when they have reached physiological stability (Levels I – II) and from the inpatient
rehabilitation unit when they have reached residential integration (Level III). Outpatient therapy and
rehabilitation services in the community are then usually required in order to achieve community integration
and productive activity (Levels IV and V)8.
2.3.4 Rehabilitation for Patients with CVA in another Country In Contrast With What Is
Offered in South Africa
As an example of what comprehensive management of patients with CVAs could look like, the researcher
investigated the National Institute for Health and Care Excellence (NICE) principles used in England for
management of patients with CVAs in lieu of any relevant guidelines from third world countries. According
to these principles, patients with CVA will receive rehabilitation in an inpatient unit dedicated to patients
with CVA. Aspects such as cognition, emotional status, swallowing, as well as work assessments are
addressed by the team. An assessment is also done by a social worker before the patient is discharged from
the hospital, in order to determine their needs at home and in their work environment, accessibility to
transport and their community, as well as their needs in terms of caregiving. Once patients can safely
transfer from a bed to a chair, and the home environment is regarded as safe and adequately adapted, patients
are discharged with support from the community therapy team. Caregiver training is done, caregiver
services are arranged where necessary, and necessary assistive devices are provided. Home visits with the
patient and his/her caregiver are also carried out, unless the patient is independent in all activities of daily
living. Follow-up opportunities are arranged, including rehabilitation services for patients discharged to
care facilities. Follow-up with patients and their caregivers take place within 72 hours by the specialist
stroke rehabilitation team, after which the same intensity of therapy is applied in the hospital where
necessary. All patients are then re-assessed after 6 months, and then annually after their discharge22.
18
In contrast, it seems that most patients in the South African context do not receive adequate medical
services, rehabilitation, caregiver training, or referrals to outpatient therapy during their hospital stay in
acute hospitals, even though the speed, degree of recovery, and outcomes mostly depend on early
intervention6. Most hospitals do not dedicate any hospital beds or protocols to patients with CVA, and
patients are often discharged home as soon as they are medically stable (after an average of 5 – 10 days)
due to a lack of beds, limited staff, and finances2,6,20. Although rehabilitation units and therapy services are
available in both private and public health sectors, they are not necessarily well coordinated with an inter-
professional approach23 or exclusively for patients with CVA3. They are also not always conveniently
located and accessible to all patients in South Africa. The availability and accessibility of inpatient
rehabilitation thus do not seem to be optimal in the local context, either in the private or the public health
sector23.
2.3.5 Funding of Rehabilitation in South Africa
Intervention is available for CVA survivors in the public, private, and non-governmental organisation
sectors in South Africa24. Unfortunately, according to the Human Resource Strategy for the Health Sector1,
there is a great shortage of medical personnel (including doctors, nursing staff, and rehabilitation therapists)
who can provide comprehensive rehabilitation services to all South African patients with CVA. An
estimated 19% of patients with CVA do not receive any intervention5, in spite of the Department of Health
emphasising the importance of involving a multi-disciplinary team in rehabilitation, including patients and
their caregivers or family members, in order to achieve rehabilitation goals25.
A limited number of South African citizens are members of medical schemes. Only 23.2% of households
have one or more medical aid members and, in total, only 17.4% of South Africans have medical aid
memberships. 27% of South Africans make use of private medical services26. In the private sector, the
primary funders of rehabilitation are usually medical schemes. These funders determine the duration of
patients’ rehabilitation (which is usually limited), in line with the prescribed minimum benefits of an
individual’s particular medical scheme plan or option27. Although CVA is listed as a Prescribed Minimum
Benefits condition, which stipulates that therapy must be funded for patients with this condition, the number
of therapy sessions approved are not indefinite. Rehabilitation units are required to report patient progress
to relevant medical schemes, in the form of an admission report upon admission, which includes their goals
as a team and an estimated time frame needed to achieve these goals. Weekly progress reports with patients’
Functional Independence Measure (FIM) scores are also sent to medical schemes. As patients progress or
reach a plateau, the focus and intensity of therapy for these patients may shift as their needs change (for
example from intensive rehabilitation to caregiver training, prevention of complications, or maintenance of
current abilities). Effective communication between medical schemes and healthcare providers in terms of
19
patients’ progress, goals, and needs usually result in sufficient rehabilitation for patients and are also
affordable to medical schemes, as therapy is terminated or decreased once patients reach a plateau9.
Unfortunately, patients cannot always stay in rehabilitation units long enough to reach all their rehabilitation
goals. If patients reach a plateau or do not show sufficient progress for a certain amount of time, they might
have to be discharged before reaching a level of independence in their daily living activities. Although some
patients might benefit from ongoing intervention after discharge, such as home-based caregiving and
weekly outpatient rehabilitation, this type of care is often not funded by medical schemes. Therapists and
service providers can provide motivation to medical schemes for additional funding in order to complete
the therapy goals set for a patient9, but it is the experience of the author that, in most cases, medical schemes
do not cater sufficiently for patients’ out of hospital rehabilitation needs. If patients can then not fund these
services themselves, they have to do without.
2.3.6 Caregiving and Support Post Discharge
Although early intervention, such as inpatient rehabilitation, is crucial for patients to optimise their
functional outcome and to lay a solid foundation for skills that need to be developed, it is only the first step
in the patients’ journey to return to their premorbid function. It provides a safe environment for patients to
make sense out of what happened to them and provides them with the necessary tools to start rebuilding
their lives after discharge. Financially, inpatient rehabilitation is also beneficial to patients and funders to
prevent future complications and to optimise patients’ functional outcomes with early intervention.
However, rehabilitation is an ongoing and inter-professional process, and if inpatient rehabilitation is not
followed up with outpatient therapy and referrals to the necessary healthcare providers in the community,
the rehabilitation programme and therapeutic outcomes will not be optimal23. Furthermore, inpatient
rehabilitation units often only provide rehabilitation up to rehabilitation outcome level III (residential
integration) as described by Landrum, Schmidt and McClean (cited by Hassan et al.8; cf. Table I), which
implies that patients are discharged before achieving community integration and productive activity levels
where they might be able to participate in social activities or return to work8. It further implies that patients
often still need to continue with outpatient therapy services and have stronger support systems in place,
thus creating a need for, for instance, home-based caregivers.
Unfortunately, the transition between inpatient rehabilitation, discharge, and living at home often seems to
be problematic to patients and caregivers in South Africa. Although limited studies are available regarding
patients who received private inpatient rehabilitation services, it seems to be of great concern at the Western
Cape Rehabilitation centre, serving patients from both public and private healthcare services. According to
Hassan et al.8, no patients in their study were able to continue with outpatient therapy after discharge, and
20
patients thus did not receive the necessary support to achieve levels IV and V in their rehabilitation process8.
Consequently, caregivers are often confronted with many unresolved matters, such as insufficient
adaptations to the home environment and changes in the patient’s functional abilities28, which cannot be
adequately addressed by caregiver training alone4.
Unresolved matters can further be seen in other studies where patients with CVA show poor community
reintegration at 12 months post discharge from acute hospitals29. This seems to be the case even with
patients who complete intensive inpatient rehabilitation at the Western Cape Rehabilitation Centre in Cape
Town (serving public and private healthcare patients)30. Patients’ ability to perform household tasks, such
as meal preparation, sustain interpersonal relationships, take part in recreational activities, social
interaction, use of transport29, mobility, work, as well as activities which they find meaningful, all seem to
be impaired30.
The reasons for poor continuation of rehabilitation following discharge include poor availability in rural
areas28 and a shortage of healthcare workers. Sometimes, due to poor communication and discharge
planning, patients are not referred for outpatient therapy after discharge. Even if they are referred, and
services are available, patients often experience challenges with finances and transport needed in order to
attend therapy sessions4, and patients who were admitted to private inpatient rehabilitation units might not
have the finances to continue with private outpatient rehabilitation services. Limited insight from
caregivers, differences in expectations, as well as underestimating the level of difficulty of therapy (patients
think they can do their own rehabilitation or their caregivers can help them at home), are all reasons why
patients are not always able to attend their outpatient therapy sessions31. Although patients seem to recover
to some degree without receiving therapy, recovery is not optimal, and patients are not able to reach their
full functional capacity as soon as possible after a CVA. For reasons discussed throughout this article,
patients often remain on a low functioning level. Consequently, family members are often forced to take
up unplanned roles as caregivers11, and caring for patients with CVA becomes a full time “job” with many
challenges12. Caregivers thus have an important role to play in the rehabilitation of CVA survivors32.
2.4 THE OCCUPATION OF CAREGIVING
2.4.1 Informal Caregivers
According to Rosalynn Carter at The American Occupational Therapy Association 2014:33:1
There are only four kinds of people in the world: those who have been caregivers, those who are currently
caregivers, those who will be caregivers, and those who will need caregivers.
21
Caregivers, carers or informal carers can be described as someone who provides help and support to a
partner, child, relative, friend, or neighbour, who could not manage without their assistance34. For the
purpose of this article, a caregiver mostly refers to an extended family member, friend or person who
volunteers to take care of a patient with CVA after discharge from a private inpatient rehabilitation unit.
The caregiver, who may be paid or unpaid10; trained as a caregiver or untrained, takes care of the patient at
home and not in an institution. This caregiving usually includes/requires assisting the survivor of CVA in
activities not generally expected from a family member or friend35.
The experience of being a caregiver, especially an unpaid, untrained family caregiver, has been well
described in literature from several disciplines. It is usually described in terms of “burden of care”,
describing the strain involved in acting as a carer for the survivor of CVA. For the purpose of this literature
review, the researcher focusses on literature allowing better understanding of caregiving as an occupation,
and of maintaining an occupational perspective on caregiving in the South African context, where
caregivers are usually family members of CVA survivors.
2.4.2 Caregiving as Occupation/Co-Occupation
Not only patients, but all persons, including caregivers, are viewed as occupational beings, and should be
allowed to participate in activities which they find meaningful21. Caregiving is described by authors as an
everyday occupation36, but more often a co-occupation37-41, and also a collective occupation42.
Caregiving as a co-occupation, as described by Pickens and Pizur-Barnekow, involves aspects of shared
physicality, shared emotionality, and shared intentionality, embedded in shared meaning38. Co-occupation
occurs when, for example, a caregiver physically helps a patient to eat, with both working towards the same
goals and accepting each other’s roles38,40. They are both involved in an activity at the same time and it is
interactive – both parties are affected by the other’s performance of the ativity39.
Occupations within a relationship are categorised by Doidge41 as co-occupations where the persons are
‘doing with’, ‘doing to’, ‘doing for’, and ‘doing because of’, each other. These four categories of co-
occupations are present in all relationships41. ‘Doing with’ occupations involve two people participating in
an activity at the same time and place, with the same aim and purpose. ‘Doing to’ also involves two people
at the same time and place, although one person is more involved in the activity than the other. Participants’
aims and purposes might also vary. ‘Doing for’ occupations are described as one person doing something
for another, not necessarily at the same time or place. ‘Doing because of’ involves one person participating
in an activity because of another person’s existence, but does not include the person being aided in the
22
activity41. Although Doidge41 uses examples to describe above mentioned occupations through the
relationship of a dog-owner with his/her dog, the researcher will attempt to use examples relating to the
context of this article, thus applicable to a caregiver and a patient with CVA. An example of ‘doing with’
might be a caregiver and patient cooking together where both participate in the same time and place. ‘Doing
to’ might entail a caregiver washing a patient who cannot do it him-/herself. ‘Doing for’ might comprise a
caregiver buying necessities for the patient such as food and clothes. ‘Doing because of’ might be a
caregiver attending an information session regarding CVA.
Although research regarding co-occupations focusses mainly on interactions between mothers and children,
the researcher is of the opinion that the principles can also be applied to a survivor of CVA and their
caregiver, e.g. if a caregiver assists a patient to dress himself, they are both engaged in the physical activity
and intention of getting the patient to dress himself. Emotional responses when achieving their goal may
be that of joy or accomplishment, depending on the level of mastery, which results in a sense of meaning
for both the caregiver and patient. If the patient needs maximal or total assistance with the activity, the
physicality involved will be very high at first. As the patient makes progress, the physicality required will
decrease. At first, the emotionality might be high as the patient feels frustrated, but as the activity is
mastered, the patient might experience joy and confidence will increase, which will most likely also result
in the caregiver experiencing shared joy with the patient and both will find it meaningful. The same
principles can be applied for any activity shared by two or more people who have a shared intention,
emotion, and physicality in which they find meaning, even when participating in activities such as visiting
a doctor or planning a meal together (cf. Pickens & Pizur-Barnekow38). When participating in co-
occupation, two persons thus affect the response of each other within the activity they participate in43.
In the co-occupation of caregiving, the patient may experience increased disability if not allowed optimal
participation in meaningful activities38, and if not involved in decision-making about activity participation.
If patients are not involved in the decision-making process, it may lead to occupational deprivation or
injustice for the patients. On the other hand, both the caregiver and patient may find great meaning in their
participation in this co-occupation, which may prevent occupational injustice40.
It is thus important to understand that not only caregivers, but also survivors of CVA are at risk of
experiencing occupational injustice, since they are dependent on others to provide them with the
opportunity to participate in meaningful activities. McDougall et al.44 reiterates the importance of
understanding the impact of caregiving on both parties involved – the patient and caregiver - in order to be
able to enhance occupational balance and justice for both the patient and caregiver44.
23
Although it is recognised that caregivers might have positive experiences when fulfilling their role as
caregivers and in finding meaning in their occupations as caregivers, it is also important to consider the
implications of caregiving, the burden of care, as well as other challenges experienced by caregivers of
people with CVA. The occupation of caregiving comes at a potentially very high cost for the person who
provides the care, which can then result in occupational loss, occupational disruption, as well as deprivation.
It also comes with high expectations from family members and medical staff. However, in South Africa
the vital role played by caregivers is not well acknowledged and recognised, and little training and support
is provided. In comparison, the United Kingdom has a governmental policy aimed at caregivers as well as
available resources, such as telephone helplines, formalised carer training, as well as emergency support45.
2.4.3 Implications and Burden of Care Experienced by Caregivers
Caregivers are often reported as experiencing many challenges, whilst feeling unheard and poorly
supported10. They may experience emotional, financial, and even health-related challenges on a daily
basis32,46. Caregivers experience difficulty participating in their ‘usual’ occupations, as caregiving-related
duties are very time-consuming. Most caregivers give up and stop participating in activities which were
previously meaningful and important occupations to them; therefore, occupational loss is often experienced
after taking up the role of caregiver47. Aspects which negatively affect caregivers’ occupational balance
include insufficient opportunity to return to or start a meaningful career or activities that they find
meaningful or enjoyable44. Caregivers also frequently perceive that patients’ needs should enjoy preference
above theirs, causing them to neglect their own occupational needs. Caregivers’ participation in occupations
which they find meaningful are thus negatively influenced by limited available time and opportunity, or is
no longer seen as a priority44. Consequences of occupational loss include higher stress levels, higher burden
of care, lower energy levels, and decreased psychological well-being47.
Caregivers’ circumstances differ greatly, and factors that may contribute to the burden of care for some
caregivers may not be a burden to others48. Common themes which can contribute to a high burden of care
are identified in this study through survey of literature regarding burden of care experienced by caregivers
of CVA survivors11,32,46,49-63. These include demographic factors of caregivers and patients, psycho-social
and environmental factors, the physical and psychological aspects of caregivers and patients, as well as
patients and caregivers’ activity profiles.
2.4.3.1 Demographic Factors
Female caregivers, especially spouses of patients with CVA, seem to have a higher occurrence of anxiety
related conditions than male caregivers49 and experience a higher burden of care50. Burden of care is also
24
higher with younger caregivers having to care for their in-laws51 and with caregivers of patients with more
serious and debilitating symptoms49. Older and male patients, patients with incontinence, as well as those
with visual-spatial perception problems, contribute to a higher burden of care52.
2.4.3.2 Psycho-Social and Physical Factors
Caregivers who receive poor support from their families experience a higher burden of care. Their work-
load and feelings of isolation increase53. Social interaction of caregivers is limited due to more caregiver
related obligations. Decreased social interaction of caregivers, could further result in decreased
participation in recreation and limited interaction and forming of healthy relationships with other people54.
Furthermore, financial factors associated with caregiver burden include increased medical-related costs,
social, and vocational changes, e.g. family members who stop working in order to be able to take care of
the patient32 and loss of domestic income55 due to the patients’ inability to return to work after the incident56.
Although patients and their caregivers are usually very positive toward the rehabilitation process, they
experience a significant difference between the simulated environment in rehabilitation units and their home
environment. One month after discharge from an inpatient rehabilitation unit in Australia, patients
experience strain in terms of their daily activities and routines57. With assessment of the patients’ and the
caregivers’ combined perception of burden of care, it was found that only 52% of caregivers and patients
are satisfied with the therapy they received one year after the CVA58.
The efficacy of discharge preparation conducted in inpatient rehabilitation facilities, as well as bridging the
gap between therapy in rehabilitation units and community-based rehabilitation, are thus evident concerns.
Emphasis is placed on the importance of determining factors associated with caregivers’ burden of care
after discharge in order to follow a more client-centred approach in both treatment and caregiver training
in the future.
Three main aspects related to burden of care include caregivers’ overall strain, loneliness, and level of
dissatisfaction. Burden of care increases in relation to increasing emotional challenges. These emotional
challenges range from being the only caregiver to the presence of health-related problems46, which result
in physical, psychological, emotional, social, as well as financial challenges53. Psychological problems
often experienced by caregivers include tiredness, anxiety, despair, frustration, and isolation as a result of
caregiving related duties32. According to Carod-Artal et al.49, depression contributes to burden of care; 30%
of caregivers experience depression. Furthermore, anxiety often leads to cardiovascular illnesses and even
death53.
25
Fulfilment of caregivers’ personal needs, such as a healthy social life, the availability of stroke prevention
information, prevention of their own tiredness, and optimal management of patients’ mood fluctuation,
mediate the level of burden of care experienced with caregiving50. However, specific aspects affecting each
individual’s psychological health differ greatly53. Caregivers of patients with CVA frequently do not feel
equipped to handle CVA survivors in terms of their special bodily, psychological, and mental requirements
after discharge46, an issue which should specifically be addressed during rehabilitation. Furthermore,
caregivers’ view of their problem solving skills before discharge predict their perceived social support and
physical health post discharge64.
Excessive stress experienced by caregivers could lead to unnecessary placement of patients in institutions,
which can lead to an even higher burden on the public as well as private health care systems. Unnecessary
placement can be prevented by providing the necessary support for caregivers and patients62, as well as
through “learned resourcefulness”, which is the ability to manage stressful situations, emotions and
problems in a changing environment63.
2.4.3.3 Activity Profiles
Improvement in patients’ physical abilities59, mental functions, and independence in terms of daily living
activities, all positively influence relieving burden of care52. The higher the level of patient dependence in
activities of daily living, the more time caregivers will have to spend assisting patients53. Kamel et al.60
notes a strong correlation between patients’ levels of dependence in daily living activities as well as
depression, and caregivers’ burden of care. Caregiver burden increases with patients’ depressive symptoms,
which also directly and negatively influences caregivers’ quality of life60. The importance of inpatient
rehabilitation, as well as occupational therapy intervention after discharge are thus emphasised, in order to
ensure that patients reach and maintain their highest level of functional independence. This will not only
increase the quality of life of patients, but also reduce the burden of care on caregivers and prevent
deterioration of their own health. Patients will thus benefit from maximum therapy funding from medical
scheme providers in order to prevent either the re-admission of patients or the admission of caregivers.
Caregivers’ recreational activities, daily routines, and balance of their activity profiles are often negatively
influenced by their caregiver duties, mostly due to patients’ slow speed of task completion57, caregivers’
long working hours, high levels of stress, poor quality of sleep, financial difficulties51, and extreme
fatigue11.
The literature surveyed therefore clearly indicates that, if caregivers are insufficiently trained, are unable to
cope with the high demands of their roles as caregiver, or if patients are not adequately taken care of, severe
26
consequences can be expected. Intervention should not only aim to prevent the occurrence of CVA, but
also to optimally manage and rehabilitate survivors of CVA and their caregivers through all the
rehabilitation outcome levels. Apart from the occupational disruption, challenges, and burden of care
experienced by caregiving,
…everyday occupation holds promise for contributing to the relative well-being of both caregivers and care
receivers and for facilitating continuity of relationships and identity for the caregiver36:9.
Occupation can thus be used as a powerful tool to re-establish identity and meaning in caregivers’ new roles
that they need to take up/fulfil when caring for survivors of CVA.
2.5 DISCUSSION
Cerebrovascular accidents are a public health problem and a leading cause of disability in South Africa,
often resulting in functional impairments. Rehabilitation, therefore, is essential in acute hospitals, in-patient
rehabilitation units, as well as at home. Patients should progress through all the rehabilitation levels in order
for rehabilitation to be successful8. South Africa currently fails to provide CVA survivors with
comprehensive rehabilitation services due to the limited availability of therapy services and funding from
medical schemes4,9. This lack of rehabilitation services, leads to CVA survivors needing family members
or caregivers to assist them after discharge from hospitals or rehabilitation units. These individuals need to
step into the unplanned occupation of caregivers, which often results in occupational loss and poor well-
being of caregivers47.
Even though the focus of this article is the caregiver, the effect of the carer's well-being on the survivor of
CVA cannot be ignored. It is crucial for the well-being of both the patients and their caregivers to focus on
optimally empowering caregivers to cope with the burden of taking care of stroke survivors. This can be
done through caregiver education, caregiver support (such as stronger outpatient rehabilitation services),
home-based caregiving services, support groups, and home visits from therapists4.
Considering the complexity of caregiving as an occupation, and the implications on the patient, it is
important to consider recommendations for clinical practice and future research in order to ultimately assist
these caregivers of CVA survivors.
27
2.6 RECOMMENDATIONS
2.6.1 Therapeutic Intervention for the Survivor of CVA
It is recommended that better collaboration between the different sectors delivering therapeutic intervention
(governmental, non-governmental organisations, as well as private healthcare services, including
rehabilitation) should be established in order to provide patients with the best possible healthcare services24.
Better collaboration might involve public healthcare services accommodating patients with medical
schemes in order to continue with outpatient therapy, should their medical schemes not be sufficient to fund
private outpatient therapy sessions.
Comprehensive in-hospital rehabilitation should be available to all patients with CVA in South Africa.
Acute hospitals as well as inpatient rehabilitation units should contain dedicated stroke units with
specialised healthcare workers and the necessary equipment to optimally manage patients with CVA.
Factors to consider when planning where the patient should stay after discharge include the accessibility of
their homes, the availability of caregivers, as well as progress made by the patient throughout treatment in
rehabilitation facilities. This decision should involve the team, patients, and their families2 in order to ensure
that they will be as functional and independent as possible at home or in care facilities, and can perform
their daily occupations at the highest possible level of independence21. Discharge planning and preparation
are thus considered a priority aspect to address and should, therefore, be facilitated from an early stage in
the rehabilitation process with the aim to limit the burden of care after discharge.
It is also recommended that patients in the community who are medically stable, who have the necessary
prescriptions for medication and follow-up appointments with the necessary healthcare providers, who can
be cared for and receive therapy from their home environments, are better followed up by home-based care-
workers and community-based rehabilitation services in accordance to the South African guidelines for the
management of ischemic strokes and transient ischemic attacks2.
2.6.2 Family and Caregiver Training
The importance of family and caregiver training during in-hospital rehabilitation, as part of the continuous
holistic care plan, is emphasised in literature and by clinicians32,50,58,60. Caregiver training should include
home programmes which can be used by caregivers in order to maintain and/or improve patients’ physical,
psychological, and cognitive abilities. Caregivers should also be provided with resources for possible
outpatient therapy for the patient65.
28
Inpatient rehabilitation facilities might find it meaningful to present workshops for caregivers before and
after discharge. These workshops could include the following:
i. Physical handling, transfers and basic activities of daily living techniques for the patient with CVA;
ii. Life skills, including problem-solving techniques48; and
iii. Insight into problems they may experience at home, including in their physical and psychological
burden of care, to predict possible obstacles and prepare themselves accordingly, and awareness of
all the available resources48.
Occupational therapists can also assist caregivers to balance their activity profiles (occupational balance)47
in support of these caregivers’ daily duties35. It is further advised that occupational therapists should work
in a family-directed fashion in order to enable caregivers to resume meaningful activities and occupations
again after taking up their roles as caregivers44. Caregivers and patients should be guided in establishing
optimal ways of working together in order to increase their chances to find meaning in activities related to
caregiving38. When patients actively participate in activities, they, as well as their caregivers, find it
meaningful, which is necessary (for both parties) to obtain and maintain good quality of life40. Caregivers
should thus be identified and included in therapy sessions from the early stages of inpatient rehabilitation.
Caregivers’ needs should be assessed holistically, and intervention programmes should be customised for
each family or caregiver’s individual needs. For example, families might be advised to identify more than
one caregiver to alternate caregiving duties. By addressing each caregiver’s individual needs, burden of
care will be reduced and caregivers will be assisted in functioning better in the community, which will
directly contribute to the CVA survivors’ quality of life53. Caregivers should, however, be motivated to
communicate more freely and openly about their expectations or needs with regard to information and
caregiver training sessions prior to discharge64. It is thus important to not only build a therapeutic
relationship with patients, but also with their caregivers, in order to facilitate open and honest
communication. This could aid in addressing possible challenges which caregivers might face post
discharge from the rehabilitation unit.
In spite of the above recommendations regarding the content of caregiver training, the researcher would
also like to point out the danger of overloading caregivers with information and guidelines, even though it
may apparently be for their own good. Caregivers sometimes feel overwhelmed by the amount of
information and home programmes given to them by therapists upon discharge. Although they might be
motivated to follow home programmes, they might struggle to fit it into their full and exhausting daily
schedules19. Regular telephonic follow-ups might assist in identifying problem areas after discharge and in
providing caregivers with the necessary resources to assist them. Caregiver training alone also cannot
sufficiently address adaptations needed in the home environment and changes in the patients’ functional
29
abilities4,28 and needs to be supported by home assessments, outpatient rehabilitation services, home-based
support services, as well as support groups4 to assist them with their new occupation as caregivers.
It is also recommended that further research be conducted regarding the perceived burden of care for
caregivers of patients with CVA, which aspects contribute to caregiving and how it affects the role and
occupations of the caregivers, in order to better address these aspects from an occupational therapy point
of view.
2.6.3 Outpatient Therapy
Against the background of this article, describing the importance of considering the needs and experiences
of caregivers, the author emphasises the need for appropriate caregiver training and support structures10.
Perhaps the South African private health sector should plan the distribution of medical funds differently to
also allow for the very important level of rehabilitation, namely community reintegration, to take place. By
funding more out of hospital services after discharge from an inpatient rehabilitation facility, persons with
CVA will be enabled to make use of professional caregiving services such as home-based caregivers,
community rehabilitation worker visits, regular outpatient therapy, as well as the continuous availability of
assistive devices and/or contextual home adaptations.
2.7 CONCLUSION
As CVA is an incapacitating condition resulting in functional impairments causing great concern in SA,
therapeutic intervention through all the rehabilitation levels is crucial to ensure that patients reach their
optimal level of function. However, medical schemes do not provide unlimited funding, and patients do not
always have enough finances to continue with outpatient therapy after discharge from a private inpatient
rehabilitation unit. Patients making use of public services do not always have access to inpatient
rehabilitation services and are often discharged home as soon as they are medically stable due to limited
resources2,6,20. A higher demand is therefore placed on caregivers to assist patients to achieve community
integration and productive activity levels8.
Caregiver training conducted prior to discharge from inpatient rehabilitation units is not sufficient, and
more structured support such as outpatient rehabilitation services, home-based support services, as well as
support groups4 are necessary to enable patients to reach their optimal level of function. Consequently, this
could also decrease caregivers’ burden of care. Caregivers’ adaptation to their new occupation and co-
occupation has, therefore, become increasingly important in comprehensive rehabilitation and management
of patients with CVA in order to prevent occupational loss.
30
In the South African context, caregivers of patients with CVA are often family members who are not
adequately equipped with the necessary skills and training upon discharge4. This can put tremendous
financial, physical, and psychological strain on these caregivers, as patients’ functionality are often still
impaired upon discharge53. Limited access to community resources, home care services, and support groups
are common obstacles after discharge8. A gap thus exists in the transition between patients’ inpatient
rehabilitation with the support of a therapy team, and discharge, characterised by limited support systems.
This could potentially lead to complications and even re-admissions of patients at a later stage. If aspects
contributing to burden of care for caregivers of patients with CVA are better understood, measures and
strategies could be developed in order to not only maintain and promote their health, but also to reduce
complications and re-admissions of the patients they take care of.
South African guidelines for stroke management suggest that improvement of home-based care and
community-based rehabilitation should be a primary focus in order for the better management of patients
with CVA in the community2. Caregivers are viewed as an important part of the therapy team, which could
be strengthened by assessing and supporting them in their needs as caregivers65. In this sense, occupational
therapists can contribute in addressing obstacles caregivers face before the patient is discharged, by
including psychological and practical aspects in caregiver training in order to prevent a high burden of
care48. Lastly, it is of utmost importance to provide caregivers with the necessary resources to enable follow-
up by occupational therapists in the community23.
In future studies, therapists might develop comprehensive inter-professional caregiver programmes which
could facilitate the transitional process between inpatient rehabilitation units and discharge, starting in the
rehabilitation unit prior to discharge and followed up with community-based rehabilitation. Therapists and
caregivers should thus join forces and work together for the benefit of both the caregiver and patient.
31
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36
3. ARTICLE 2 (SCIENTIFIC ARTICLE)
Title of Article (Presented as a Scientific Article)
Factors associated with Burden of Care as experienced by caregivers of people with functional
impairments due to a CVA, after their discharge from a private rehabilitation unit in Bloemfontein.
3.1 ABSTRACT
Introduction
The transition between inpatient rehabilitation and discharge of survivors of strokes from private
rehabilitation services in South Africa is often challenging. After discharge, the caregiver role as an
extension of rehabilitation, as well as the assistance of patients in daily occupations, becomes important.
Although the occupation of caregiving could have positive attributes for the caregiver, it can be perceived
as a burden. This study investigates the burden of care as experienced by patients’ caregivers post discharge,
contributing factors to burden of care, and how occupations relate thereto.
Method
A quantitative descriptive study was conducted with 63 patients and caregivers, using a consecutive, non-
randomised sampling method. Patients’ Functional Independence Measure (FIM) scores upon discharge
were obtained. Telephonic interviews were conducted two months after discharge, using the Modified
Caregiver Strain Index (MCSI), as well as a non-standardised questionnaire.
Results
Patients’ median FIM scores at discharge were 86, indicating that they needed minimal assistance.
Caregivers experienced some burden of care, since the median MCSI score was nine, interpreted as
minimal/moderate strain. Contributing factors include financial, physical, psychological, and social aspects.
Caregivers also seem to have unbalanced occupational profiles.
Conclusions
The problematic transition between private inpatient rehabilitation and discharge needs to be addressed
Key words: Stroke, Caregivers, Burden of Care, Private Inpatient Rehabilitation
37
3.2 INTRODUCTION AND LITERATURE SURVEY
Survivors of Cerebrovascular Accidents (CVAs) often experience permanent impairment and need
assistance in their activities of daily living1-3, as a full recovery is usually only observed in about 45% of
cases of patients with CVA4. Rehabilitation thus plays a vital role in enhancing independence in daily
activities, facilitating community integration, and returning to productive activities such as work5.
Comprehensive, intensive, early intervention from an inter-professional team can decrease the effect of
disability and assists patients in reaching their maximum potential. It assists with the transition between
medical management and patients’ return to their activities of daily living and occupations, which ensures
greater quality of life, and in which they find meaning or purpose6.
Rehabilitation services provided in the private sector are primarily funded by medical schemes. These
funders determine the duration of patients’ rehabilitation, in line with the prescribed minimum benefits, and
time spent in rehabilitation is unfortunately not unlimited7. From a financial perspective, early intervention
in terms of inpatient rehabilitation is also beneficial to patients and funders in order to prevent complications
(such as falls, contractures, shoulder pain/subluxation and pressure sores), and to optimise patients’
outcomes8-9.
The goal of rehabilitation is generally to achieve function at the highest level of independence possible for
each individual before discharge10. After the inpatient rehabilitation process, most patients are independent
or only need minimal assistance with activities of daily living11. Furthermore, inpatient rehabilitation may
provide a safe environment for patients in order to help them make sense of what happened to them. It
further provides the necessary tools to start rebuilding their lives after discharge8. However, inpatient
rehabilitation usually only focusses on residential integration (“return to home”), but continued support in
terms of outpatient rehabilitation is additionally required. Community integration (where patients can
participate in public transport if applicable, social interaction, handle financial aspects, household tasks,
and manage their health), as well as productive activity (which involves returning to work, learning new
skills or adaptations needed in the work setup), all need to be addressed during outpatient therapy12.
At the specific rehabilitation unit where this study was conducted, patients engage in various types of
therapy on a daily basis, offered by the inter-professional team. Family meetings are also conducted with
each patient and his/her family to report on the patient’s diagnosis, prognosis, therapy goals, progress, and
to manage future planning. The accessibility of the patients’ homes and the need for assistive devices are
also discussed. Caregiver training is usually done in the week before discharge (depending on the amount
of training needed and the availability of caregivers). Home programmes are also provided and outpatient
therapy is recommended where needed13.
38
However, the transition between inpatient rehabilitation and discharge of stroke patients at private
rehabilitation services in South Africa (similar to the one described above) presents, in general, salient
challenges. The permanent impairment of and continuous support needed by stroke survivors can place a
high responsibility and burden of care on their caregivers11,14.
From an occupational therapy perspective, caregiving is described by authors as an everyday occupation15,
a co-occupation16-20 and also a collective occupation21. It involves aspects of shared physicality, shared
emotionality, and shared intentionality, embedded in shared meaning17 where the caregiver and patient are
interactive and both affected by each other’s activity performance17. Co-occupation are present in all
relationships, including caregivers and their patients and can be organised into four categories: ‘Doing with’
– where two persons participate in the same activity with the same goal and purpose, at the same time.
‘Doing to’ – one person is more involved in the activity, although it is still happening at the same time and
place. ‘Doing for’ – one person is doing something for the other, not necessarily at the same time and place,
and lastly ‘doing because of’ which include participation in activity because of the other, which does not
include one person being assisted20.
Some caregivers might value this new role as positive and derive pleasure and meaning from it. Yet
individual caregivers’ circumstances differ greatly, and, for some, caregiving is experienced as a burden.
Caregivers who assist patients after discharge are usually family members with no previous experience or
training22. An increased demand in terms of finances, time, and other caregiver-related activities are placed
on family members and/or caregivers, who are often forced by circumstances to take up the unanticipated
role as caregiver for the patient with CVA23. Not only is it expected of caregivers to assist patients with
daily living activities; assisting with maintaining and improving skills learnt in rehabilitation in order to
improve patient’s quality of life also become part of the caregivers’ role22. They thus play and important
role in and become an extension of rehabilitation delivery post discharge24.
Previous studies show that caregivers might stop participating in activities which were previously
meaningful to them and therefore experience occupational loss after taking up their roles as caregivers25.
Their caregiving-related duties are very time consuming; a general perception that the patients’ needs
should be placed before their own often leads to neglect of their own occupational needs26. Aspects which
negatively affects caregivers’ occupational balance are influenced by the daily roles they need to fulfil, their
own physical and psychological well-being, the availability of sufficient support systems, as well as their
future goals26. They can thus face physical, psychological, emotional, social, as well as financial
challenges27. Consequences of being a caregiver are higher stress levels, higher burden of care, lower energy
levels, and decreased psychological well-being25, as well as tiredness, anxiety, despair, frustration, and
isolation28.
39
Early identification and involvement of a caregiver in the in-patient rehabilitation process may enhance a
patient’s recovery towards functional outcomes. Caregiver training, which informs caregivers of the
resources available and includes advice on stress management, may lead to a reduced burden of care29.
Family meetings, caregiver training, and complete discharge reports (including available resources post-
discharge) all form part of the rehabilitation process at the inpatient rehabilitation unit where this study was
conducted13.
Inpatient rehabilitation mostly aims to rehabilitate patients up to a residential integration level and does not
necessarily address community reintegration and productive activity as described in the rehabilitation
outcome levels (cf. Landrum, Schmidt, and McClean, cited by Hassan, Visagie, and Mji 12). Consequently,
caregivers might not feel prepared for their new role upon patients’ discharge from an inpatient
rehabilitation unit, and might experience burden of care12. This issue is further problematized by a limited
availability of South African specific studies in two fields: firstly, studies determining the burden of care
post discharge from a private, inpatient rehabilitation setting, and secondly, research ascertaining whether
burden of care is experienced by caregivers of patients with CVA post discharge and after receiving private
inpatient rehabilitation. It is also necessary to investigate factors contributing to burden of care post
discharge from a private inpatient rehabilitation unit in order to optimally manage it from within that setup.
The aim of this study is to investigate the perceived burden of care for caregivers of patients with CVA
with functional impairments, after discharge from a private rehabilitation unit in Bloemfontein. The first
objective is to identify the aspects caregivers perceive as contributing factors to burden of care at two
months post discharge, including financial, physical, psychological, social and personal aspects. Secondly,
this study intends to determine how the role and occupations of caregivers relate to their perceived burden
of care.
3.3 METHODS
3.3.1 Study Design
A quantitative descriptive study was conducted.
3.3.2 Population and Sampling
The study was conducted at a private inpatient rehabilitation unit with a rehabilitation therapy team
including doctors, nursing staff, physio-, occupational-, and speech therapists, a dietician, and social
workers. The patients and their families are viewed as part of the team and are included in goal setting and
future planning for the patients. Patients with CVA’s duration of stay in the rehabilitation unit depends on
40
the ‘prescribed minimum benefits’ and authorisation granted by their medical schemes, as well as on a team
decision regarding patients’ readiness for discharge, or when limited progress is seen. Authorisation from
the medical schemes to remain in rehabilitation is usually updated on a weekly basis, depending on progress
made according as reflected in patients’ weekly progress reports7,13.
Patients subscribed to a specific plan from a certain medical aid qualify for a care plan after discharge,
where professional caregivers can provide their services for up to two weeks after discharge. The patients
can also receive a home visit from an occupational therapist prior to or after discharge in order to make
recommendations for adaptions needed. Patients can further qualify for a certain amount of outpatient
therapy sessions30. Unfortunately, these measures are not subsidised by all medical schemes.
Over the period of June 2017-May 2018, the unit admitted 89 patients with CVA. During the previous year,
from June 2016-May 2017, 92 patients with CVA were admitted to the unit. This amounts to an average of
seven to eight patients per month31. The study was conducted during the period of July 2017-May 2018.
The first participants (patients diagnosed with CVA and their primary caregiver) were approached to
participate in the study upon their discharge from the rehabilitation unit in July 2018. Telephonic follow up
discussions took place in September 2017. The last participants were approached in March 2018 and were
followed up with in May 2018.
A total of 68 caregivers of patients with CVA consented to participate, of which a final number of 63 met
the inclusion criteria and were included in this study. Those excluded were omitted for reasons such as
patients being deceased at the time of the follow up, being re-admitted to a hospital or care facility, or due
to caregivers not answering their phones after five attempts to contact them.
A consecutive, non-randomised sampling method was used in selecting participants. Inclusion was
regulated based on the following criteria: Patients with ischemic/haemorrhagic CVAs and/or acute/previous
CVAs including co-morbidities, from all functional levels; patients who were discharged to a home
environment and living with a family member or caregiver. Caregivers who were older than 18 years,
identified as the patient’s primary caregiver, and who had been taking care of the patient for at least one
month after discharge, were included if they stayed with the patient for at least four hours during day time,
had access to a phone, and could understand Afrikaans, English or Sesotho. Caregivers were included
regardless of being trained or untrained to be caregivers, paid or unpaid for their caregiving duties.
Patients and their caregivers were excluded if patients were discharged from the rehabilitation unit to a
facility, lived alone, or if caregivers did not give informed consent to participate in the study. If caregivers
did not answer their phones after five attempts to contact them, they were also excluded.
41
3.3.3 Data Collection
Prior to or on their day of discharge from the rehabilitation unit, the researcher approached all patients with
CVA and their caregivers, informed them of the study, asked whether they would be interested to participate
in the study, and obtained their written consent. The first part of data collection then started, namely to
capture the necessary background information of the patient on the background information document (cf.
Addendum D), in order to establish which patients and their caregivers, could be included in the study.
Information was gathered from the patient’s file (at that time still in the rehabilitation unit) by the researcher,
including the Functional Independence Measure (FIM) scores of the patient as scored by the team upon
discharge.
The second part of data collection comprised telephonic interviews with the caregivers of the patients with
CVA who met the inclusion criteria. The caregivers were contacted two months after discharge to organise
a convenient time for a telephonic interview. If the caregiver was no longer responsible for the patients’
caregiving, the researcher attempted to find out who the current primary caregiver was and contacted
him/her. The pilot study was conducted with two previously discharged participants (patients and
caregivers) in July 2017, in order to test the feasibility of the two telephonic questionnaires (the standardised
as well as the non-standardised questionnaire). The first study participants (patients and caregivers) were
then approached, and the study was conducted over a period of 9 months, as described above. During
telephonic interviews, both the non-standardised questionnaire (cf. Appendix C) and the standardised
questionnaire, the Modified Caregiver Strain Index (MCSI) (cf. Addendum E), described below in 3.3.4,
were administered. The standardised questionnaire could not be translated, as it was standardised in English,
but the non-standardised questionnaire used during the telephonic interview was available in Afrikaans,
English and Sesotho. Forward-backwards translation was used to translate the questionnaires. A trained
research assistant was used to conduct the telephonic interview in Sesotho (in the presence of the researcher)
for caregivers who preferred to participate in Sesotho, as the researcher is not fluent in this language. A
Sesotho script was provided to the trained research assistant, from which the information and questions
were to be read. If a caregiver asked a question, the research assistant made use of free translation in order
for the researcher to understand and answer the question. Caregivers’ responses were written accurately
and consistently on the questionnaire (in English), in order to ensure that the information gathered is a true
reflection of the participants’ perception.
All information recorded on the background information questionnaire, the standardised, as well as the non-
standardised questionnaires, were coded and entered into an Excel spreadsheet, after which it was sent for
data analysis.
42
3.3.4 Measuring Instruments
Three measurement tools were used in the study. Firstly, the researcher employed a background information
document to gather information from patients’ hospital files, including FIM scores upon discharge.
Secondly, a non-standardised questionnaire compiled by the researcher was used in the telephonic
interviews with the caregivers two months post discharge. Thirdly, a standardised questionnaire, the MCSI,
was also used in the telephonic interviews with the caregivers two months post discharge.
The FIM serves as an official tool for assessing patients’ level of incapacity It also indicates the amount of
assistance needed by patients to perform their daily activities. It aims to assess the patients’ level of
independence with activities of daily living32. The FIM was specifically developed for patients with lower
levels of functioning and who were admitted to inpatient rehabilitation units33. It makes use of seven-point
scale and consists of 18 items (13 items to assess motor abilities and five items to assess cognitive abilities).
Each of these items is awarded a score between one and seven. A score of one indicates that the patient
needs total assistance in that item, and a score of seven indicates total independence in that particular item34.
At the rehabilitation unit where this study was conducted, therapists record FIM scores are on a weekly
basis, and sends these scores to the relevant medical schemes as part of the patients’ weekly progress
reports. For the purpose of this study, patients’ FIM scores, as scored by trained therapy staff upon
discharge, were used in order to determine the patients’ level of functional independence at the time of
discharge.
The aim of the non-standardised questionnaire was to obtain further contextual information in order to
determine which other factors, such as roles and occupations, might contribute to the caregivers’ perceived
burden of care. The questions in the non-standardised questionnaire were formulated in line with the
research objectives by the researcher, based on literature. It consists out of five categories which were
compiled as follows: Contextual information27,35,52,57,58; Caregivers’ occupations, performance patterns and
well-being24-26,37,52,57,59; Caregivers’ performance skills28,38,58; Caregivers’ view of patients’ client
factors27,35,39-44 and Environmental factors27,28,45,52,58.
In 2003, the Modified Caregiver Strain Index (MCSI) was developed as an improved version of the
Caregiver Strain Index. The Caregiver Strain Index (CSI) was initially designed to measure stress as
perceived by informal caregivers46, which could contribute to their burden of care. The CSI has been used
43
with success in a number of studies regarding caregiver burden of patients with CVA and proved to also be
of cultural relevance within the South African context58,59.
The MCSI aims to be used as a screening tool in order to identify caregivers’ perceived burden of
care/strain. The MCSI focusses on the following aspects: financial, physical, psychological, social, and
personal, and at least one question is available for each of these aspects. The MCSI consists of 13 questions
with examples, where caregivers can answer: yes, on a regular basis (score two points); yes, sometimes
(score one point); or no (no points)60. The maximum score which patients can obtain with the MCSI is thus
26, and no suggestion is given as to which score indicates a high burden of care. Therapists must use clinical
reasoning in deciding when to investigate caregivers’ burden of care further, as the MCSI is merely a
screening tool49. Therefore, for the purpose of this study, the researcher used her own judgment based on
the interpretation of the CSI to inform the interpretation of the results of the MCSI and posits that a score
of 14 or higher is an indicator of high burden of care.
3.3.5 Reliability and Validity
Interrater reliability was enhanced by the fact that the FIM scores were only completed by staff members
who completed a licensed personnel examination using the Uniform Data System for Medical
Rehabilitation’s Online FIM Credentialing System for the FIM system. This examination is done on a two
yearly basis and is completed by all permanent staff members.
The internal validity for the MCSI is higher than the Caregiver Strain Index (CSI) with a good test-retest
reliability coefficient of 0.9349. A third of the study sample in other studies indicate a test-retest reliability
coefficient of 0.88 after two weeks. Internal consistency was also good, and no floor-ceiling effect was
found50.
The researcher attempted to minimise measurement errors, such as non-responder bias, by attempting to
contact each participant five times. If the time of the call was not convenient for them, a more appropriate
appointment was made. Interrater reliability between the researcher and research assistant were ensured by
strictly reading the question as on the questionnaire in a standard format, and documenting the exact answer
as answered by the participant. A pilot study was conducted by including two caregivers in order to
determine the practical feasibility of the questionnaires using telephonic interviews. However, participants
from the pilot study were not included in the results of this study. The phone was used in a quiet
environment in order to minimise interruptions.
44
3.3.6 Ethical Aspects
Approval for this study was obtained from the Health Science Research Ethics Committee of the Faculty
of Health Sciences, University of the Free State (reference HSREC 78/2016). Written permission was
granted by the practice manager of the private rehabilitation unit where the study was conducted. Informed
written consent was obtained from the patients (or next of kin if they were not able to give consent due to
their level of cognitive function), as well as the caregivers. All information was kept strictly confidential
and stored in a safe, secure environment. Numbers were used instead of names in order to make participants
unidentifiable.
3.4 DATA ANALYSIS
Data was entered onto an Excel spreadsheet by the researcher. The data was analysed by the Department
of Biostatistics, University of the Free State. Categorical data was reported using frequencies and
percentages. The numerical variables, FIM-, and MCSI scores were reported showing the ranges and
medians with minimum and maximum values. The median differences between groups were evaluated
using appropriate statistical tests for unpaired data, namely the Kruskal-Wallis Test. No categorical
biographical variables were compared for both the FIM - and MCSI scores.
3.5 RESULTS
The results are grouped and documented according to common themes present in all the measurement
instruments. All the following sub-headings are factors that could contribute to burden of care.
3.5.1 Demographic Information
Demographic information was obtained from the patients included in the study, as well as their caregivers,
and is reflected in Table I.
Table I: Caregiver and patient demographic information
ASPECTS PATIENTS (n=63) CAREGIVERS (n=63)
Age (Median) 58 years (18 - 82) 52 years (23 - 76)
Gender
Male 28 (44.4%) 13 (20.6%)
Female 35 (55.6%) 50 (79.4%)
45
Patients’ ages varied between 18 and 82 years with a median of 58 years. Caregivers’ ages ranged between
23 and 76 years with a median of 52 years. Most patients and caregivers are female.
Of the study sample of 63 caregivers, 32 (50.8%) are spouses, 18 (28.6%) are children of CVA survivors,
and all caregivers are related to the patients. Most caregivers stayed with the person they care for, except
for one participant. 45 (71.4%) caregivers reported that they had between one and three other persons
assisting them with taking care of the patients; these individuals are not necessarily related to the patients.
Only 18 (28.6%) caregivers had no additional caregiver assistance.
3.5.2 Patients’ Functional Level Upon and Post Discharge
Data obtained from patients’ files (and included in the background information document) indicated that
54 (85.7%) patients from the study sample (n=63) were admitted with their first CVA, and that nine (14.3%)
patients also suffered previous CVAs. Patients displayed a variety of additional medical conditions, and
their medical histories differed greatly. Additional commonly occurring medical conditions include
hypertension (n=44; 69.8%) and diabetes Mellitus (n=17; 27%). 16 (25.4%) patients suffered from
cardiovascular disease or had a history of cardiovascular conditions or cardiovascular interventions.
The table below were taken from literature but was simplified by the examiner. Results of this study were
also added in the last column. It indicates the expected hours of care, based on extant literature, which
patients need according to the total FIM scores that they obtained. For example, patients who mostly scored
level one for each FIM item obtained a total FIM score of 18-35. It is expected that these patients will need
from six to more than eight hours of care daily, which is described as total assistance. Four patients (6.4%)
in this study had total FIM scores of 18-35, indicating a need for total assistance, or more than six hours of
caregiving per day. However, caregivers in this study’s estimation of hours spent on caregiving per day
were not necessarily consistent with the expected hours as described in relevant literature, as seen in Table
II.
46
Table II: FIM Rating levels and the expected hours of care needed (Uniform Data System for Medical
Rehabilitation 201233)
FIM TOTAL FIM ESTIMATED HOURS AMOUNT OF NUMBER OF PATIENTS IN
LEVEL SCORE OF CAREGIVING ASSISTANCE THIS STUDY
NEEDED PER DAY NEEDED N=63 (%)
1 18 - 35 6- >8 Total assistance 4 (6.4)
2 36 - 53 5-7 Maximal assistance 3 (4.8)
3 54 - 71 3-5 Moderate assistance 7 (11.1)
4 72 - 89 2-3 Minimal assistance 20 (31.8)
5 90 - 107 <1-2 Supervision / Setup 15 (23.8)
6 108 -125 0 Modified Independence 14 (22.2)
7 126 0 Complete Independence 0
*Table II: Adapted by L. Serfontein
Patients had a median FIM score of 86 upon discharge, ranging between 18 and 125. This indicates that
patients mostly needed minimal assistance (FIM Level 4) upon discharge, implying an average of two to
three hours of assistance per day (cf. Table II). Of the study sample of 63 patients, 49 (77.8%) needed either
minimal assistance, supervision, or were classed as modified independent (FIM levels 4-6). 29 (46%)
patients thus did not need any physical assistance upon discharge, as they were considered modified
independent or needed supervision only (FIM levels 5 and 6) (Uniform Data System for Medical
Rehabilitation, 2012).
At two months after discharge, caregivers were asked to indicate the FIM aspects patients still needed
physical assistance or supervision with. Aspects in which patients mostly need physical assistance include
bathing (n=30; 47.6%), upper body dressing (n=19; 30.2%), lower body dressing (n=26; 41.3%), and
climbing stairs (n=28; 44.4%). However, the researcher wishes to point out that caregivers mentioned
mainly significant and relevant areas where patients needed physical assistance or supervision, e.g. when a
patient is unable to climb stairs, but is not required to climb stairs in their daily routine; the caregiver would
consequently not indicate this as a problematic aspect in daily functioning. Aspects in which patients mostly
need supervision include locomotion (mobilisation) (n=18; 28.6%) and climbing stairs (n=12; 19.1%).
Furthermore, 52 (82.5%) caregivers felt that the patients’ abilities had improved since discharge/since they
started caring for the patient, despite the fact that most patients did not receive outpatient therapy after
discharge. At two months post discharge, 16 (25.4%) caregivers indicated that patients acquired other
illnesses or injuries after discharge, which all varied. Only one (6.3%) patient fell after discharge according
to the caregivers interviewed.
47
3.5.3 Therapy Received
Patients’ admission time in the rehabilitation unit varied between less than one week and more than 12
weeks. From the study sample (n=63), 15 (23.8%) patients were admitted to the rehabilitation unit from
less than one up to five weeks, 43 (68.3%) between six and nine weeks, and five (7.9%) for 10 weeks and
longer. Most caregivers (n=43; 73%) indicated that longer time in rehabilitation would not necessarily have
relieved their burden of care.
Most patients (n=43; 68.3%) did not receive any outpatient therapy after discharge, or only continued with
their home programme. Frequency of the outpatient therapy sessions varied between less than once a month
to more than three times a week.
3.5.4 Environmental Factors
Participants (caregivers and their patients) come from a wide variety of towns and rural areas all over South
Africa. However, 22 (34.9%) indicated that they stay in Bloemfontein and seven (11.1%) stay in Kimberley.
14 (22.2%) caregivers indicated that there are eight rooms in the house where they provide care and 57
(90.5%) have an indoor bathroom, of which 32 (56.1%) have both a bath and a shower, although the study
did not enquire about the adaptation of these facilities for their needs. 31 (50.8%) caregivers have between
one and eight steps in front of the house in which they provide care. Most caregivers (n=56; 88.9%)
indicated that the house was adequately adapted for the patient’s needs. Caregivers who did not feel that
the house was adequately adapted provided reasons such as stairs inside the house, patients struggling to
use the outdoor bathroom, having too many residents in the house, or the rooms being too small. Many
patients still make use of assistive devices at times, such as a wheelchair (n=31; 49.2%) and/or a walking
aid (n=30; 47.6%). Some patients also make use of a commode (n=2; 3.2%), bath board (n=1; 1.6%), grab
rail (n=3; 4.8%), and/or transfer board (n=3; 4.8%). 24 (38.1%) patients do not make use of any assistive
devices and 61 (96.8%) caregivers feel that the assistive devices that the patients have are sufficient for
their needs.
3.5.5 Caregivers’ Occupations, Performance Patterns, and Well-Being
Most caregivers (n=49; 77.8%) do not have any previous experience as a caregiver. Their level of education
differs between primary school and postgraduate qualifications. 26 (41.3%) caregivers completed school
and 15 (23.8%) obtained diplomas. Most caregivers (n=52; 82.5%) attended caregiver training at the
rehabilitation unit upon discharge. Four (6.3%) caregivers previously worked as caregivers or nurses.
48
Of the study sample (n=63), 33 (52.4%) caregivers are not employed or only have a part-time job. 30
(47.6%) caregivers have a full-time job with working hours ranging between four and 12 hours per day.
Caregivers who indicated 12 working hours a day (n=5; 13.2%) and still took care of patients for at least
four hours during day time, had explanations such as working night shift or flexible hours, or working from
home. Responsibilities in addition to their work and caregiving-related duties were divided as follow: 36
(57.1%) had to take care of children, 58 (92.1%) participated in household tasks, and 44 (69.84%)
participated in recreational tasks.
Caregivers were then asked to indicate more or less how many hours they spent on caregiving per day and
how many hours they spent on responsibilities such as children, household tasks, recreation, or other
responsibilities. The researcher wishes to note that estimations done by the caregivers were subjective and
that the accuracy of their calculations was not verified. 35 (55.6%) caregivers spend between two to four
hours on caregiving per day, and 15 (23.8%) caregivers indicated that they spend five to six hours on
caregiving per day. 17 (27%) caregivers spend four hours a day taking care of children, 31 (49.2%)
caregivers spend four to five hours on household tasks, and 36 (57.1%) caregivers spend two to four hours
a day on recreational activities. Fifty (79.4%) caregivers felt that they spend an adequate amount of time
on caregiving related duties (not too much or too little time). However, 45 (71.4%) caregivers indicated
that they have between one and three persons assisting them with their caregiving-related tasks, which
might have influenced their answers.
Most caregivers (n=51; 81%) indicated that they are healthy at the moment. Caregivers seem to have
unbalanced occupational profiles, as 33 (52.4%) caregivers do not have a full-time job, 48 (76.2%)
caregivers spent less than four hours a day on recreational activities and 24 (38.1%) caregivers spend more
than four hours a day on household tasks.
3.5.6 Caregiver Strain
In this study, the median score of the MCSI was nine, with two as the lowest score and 22 as the highest
score, indicating that the burden of care experienced by caregivers differed greatly. As limited guidelines
for the interpretation of the MCSI are available, for the purpose of this study, a score of 14 and higher is
posited as an indication of a high burden of care, and a score of less than 14 of a minimal to moderate
burden of care. Most caregivers (n=51; 81%) experienced a minimal/moderate burden of care (a score of
less than 14), and the rest of the caregivers (n=12; 19.1%) experienced a high burden of care (a score of 14
or higher).
49
The different aspects covered by the MCSI were described by literature49 and the questions were categorised
into the different categories for the purpose of this study. Scores obtained for each aspect of the MCSI are
reflected in Table III. See appendix E for examples of each aspect of the MCSI.
3.5.6.1 Financial
Forty five (71.4%) caregivers did not experience any work adjustments. Most caregivers indicated financial
strain on a regular basis (n=23; 36.5%), or at times (n=17; 27%).
3.5.6.2 Physical
Forty four (69.8%) caregivers did not experience any sleep disturbances and 45 (71.4%) caregivers did not
feel that caregiving is a physical strain.
3.5.6.3 Psychological
Most caregivers indicated that there have been emotional adjustments on a regular basis (n=37; 58.7%), or
at times (n=15; 23.8%). Forty (63.5%) caregivers did not find patients’ behaviour to be upsetting, although
most of them felt upset that the person has changed so much from his/her former self on a regular basis
(n=14; 22.2%), or at times (n=26; 41.3%). Most caregivers (n=36; 57.1%) did not feel completely
overwhelmed at two months post discharge.
3.5.6.4 Social
Caregivers experienced caregiving to be confining on a regular basis (n=17; 26.98%), or at times (n=20;
31.8%). 34 (54%) caregivers did not experience family adjustments.
3.5.6.5 Personal
Thirty five (55.6%) caregivers did not feel that caregiving is inconvenient and 34 (54%) caregivers did not
experience any changes in personal plans. However, caregivers felt that there have been other demands on
their time on a regular basis (n=17; 27%), or at times (n=27; 42.9%).
50
Table III. Answers provided by caregivers in the Modified Caregiver Strain Index
ASPECT YES, ON A YES, NO
REGULAR SOMETIMES N = 63
BASIS N = 63 N (%)
N = 63 N (%)
N (%)
My sleep is disturbed 10 (15.9) 9 (14.3) 44 (69.8)
Caregiving is inconvenient 7 (11.1) 21 (33.3) 35 (55.6)
Caregiving is a physical strain 9 (14.3) 9 (14.3) 45 (71.4)
Caregiving is confining 17 (27) 20 (31.8) 26 (41.3)
There have been family adjustments 14 (22.2) 15 (23.8) 34 (54)
There have been changes in personal plans 10 (15.9) 19 (30.2) 34 (54)
There have been other demands on my time 17 (27) 27 (42.9) 19 (27)
There have been emotional adjustments 37 (58.7) 15 (23.8) 11 (17.5)
Some behaviour is upsetting 10 (15.87) 13 (20.63) 40 (63.5)
It is upsetting to find the person I care for has changed so much from his/her 14 (22.22) 26 (41.27) 23 (36.5)
former self
There have been work adjustments 7 (11.11) 11 (17.46) 45 (71.4)
Caregiving is a financial strain 23 (36.51) 17 (26.98) 23 (36.5)
I feel completely overwhelmed 8 (12.70) 19 (30.16) 36 (57.1)
When comparing the MCSI scores obtained from the caregivers with the patients’ FIM scores upon
discharge (cf. Table II), it is found that the 12 (19.1%) caregivers who experience a high (MCSI score of
more than 14) burden of care’s patients, had a median FIM score of 71, indicating that the patients mostly
needed moderate assistance upon discharge (FIM Level 3). The 51 (81%) caregivers who experience a
lower (MCSI score of less than 14) burden of care’s patients had a median FIM score of 90, indicating that
the patients mostly needed supervision/setup only upon discharge (FIM Level 5). There is thus a statistically
significant correlation between the patients’ FIM scores upon discharge and the burden of care experienced
by their caregivers (with P > 0.0040). The higher the caregivers’ burden of care (and MCSI scores), the
lower the patients’ level of independence (and FIM scores), and vice versa.
3.6 DISCUSSION
3.6.1 Demographic Information
Patients’ and caregivers’ demographic information correlates with literature stating that survivors of CVA
mostly seem to be adults over 45 years of age51, although the median age in literature is slightly older for
patients (67 years vs 58 years in this study) and younger for caregivers (45.6 years vs 52 years in this
study)52. Women seem to be more affected by CVAs53.
51
Caregivers reporting that they had between one and three persons assisting them with caregiver-related
tasks could have had a positive influence on the burden of care experienced, as caregiver-related tasks could
be shared. Some caregivers indicated that the patient’s medical scheme supplied a professional caregiver
for two weeks after discharge, after which the primary caregiver had to take over, as is the case with patients
subscribed to a specific option from one of the medical schemes30. Professional caregivers may have
assisted with the transition between discharge from the inpatient rehabilitation unit and the home
environment.
3.6.2 Patients’ Functional Level Upon and Post Discharge
Although the FIM only considers aspects up to a residential integration level, and not at community
integration or productive activity levels (cf. Landrum, Schmidt, and McClean, cited by Hassan et al.12), it
is still commonly used to evaluate patients’ functional levels during rehabilitation, and can also be used to
predict patients functional prognosis after discharge34. According to patients’ FIM scores, they only needed
minimal assistance upon discharge. This is to be expected, given the fact that all patients received
comprehensive inpatient rehabilitation at a private in-patient rehabilitation unit with the goal of helping
patients to be as functional and independent as possible with individualised therapeutic programmes10. This
correlates with another South African study, which found that most patients were independent in activities
of daily living, or only needed minimal assistance after discharge from an inpatient rehabilitation unit,
although that study was not conducted at a rehabilitation unit with a similar programme to the one in this
study11, as described in the introduction.
It is surprising that only one patient was reported to have fallen after discharge, as this contradicts other
research indicating that 33% of CVA survivors included in the study reported to have fallen within one year
after their CVA; an alarming 70% of these respondents reported that falls occurred at their homes54. Possible
explanations for this contrast might be that this study was done only two months after discharge, in contrast
to information from Schmid et al. 54 where participants reported falls within one year after CVAs. However,
patients in Schmid et al.’s 54 study did not necessarily complete a private inpatient rehabilitation programme
which includes caregiver training, which might also have prevented falls. It also needs to be kept in mind,
that the severity of patients’ conditions are not the same.
The fact that most caregivers felt that patients’ abilities have improved since discharge, despite the fact that
most patients did not receive outpatient therapy after discharge, might indicate the value of returning to a
familiar environment and being surrounded by loved ones and a support system, as well as the long time
frame in which patients can still show improvement after suffering a CVA. Although most improvement
52
takes place within the first four weeks following a CVA, continuous improvement can still be seen at three
months and even at six months post CVA55. Caregivers are already identified prior to patient discharge,
which can also have a positive effect on patients’ progress, as early identification of a caregiver in the in-
patient rehabilitation process has been described as a factor contributing to recovery/functional outcomes29.
3.6.3 Therapy Received
The fact that so few patients continued with outpatient therapy in this study, correlates with literature stating
that not many patients continue with outpatient therapy after discharge from hospitals. Various contributing
factors are described in literature, such as a shortage of healthcare workers, challenges with finances and
transport, a lack of communication upon discharge2, limited insight from caregivers and patients, as well as
differences in expectations, e.g. patients feeling that therapy does not address all of their concerns, or having
goals different from therapists’56.
3.6.4 Environmental Factors
Patients came from a wide variety of geographical areas and from various provinces, which highlights the
need for more private inpatient rehabilitation units, as the inpatient rehabilitation unit where the study was
conducted, is one of “the only accredited, dedicated acute physical rehabilitation units in central South
Africa”10:1.
3.6.5 Caregivers’ Occupation, Performance Patterns, and Well-Being
The fact that most caregivers attended caregiver training possibly contributes to the relatively low burden
of care experienced by caregivers in this sample. Caregiver training has been described as assisting in
preparing caregivers for their new role as caregivers and assisting with the transition between inpatient
rehabilitation and community integration after discharge57-59.
Caregivers seem to have unbalanced activity profiles, as more than half of them do not have full-time jobs,
most of them spend less than four hours a day on recreational activities, and some of them spend more than
four hours a day on household tasks. Should caregivers thus spend all their time on caregiver-related duties
and neglect other occupations such as sleep, leisure, social participation, or even work, it could affect their
health and well-being.
53
3.6.6 Caregiver Strain
Most of the caregivers experienced a minimal to moderate burden of care. This contrasts another study
(making use of the CSI), which found that 56% of CVA patient caregivers experience a high burden of care
after discharge from and inpatient rehabilitation unit11. However, the rehabilitation unit in that study was
not in the private sector, and further studies are needed to determine if burden of care is lower for caregivers
of patients with CVA, discharged from other private inpatient rehabilitation units in order to support
findings from this study.
The correlation found between patients’ FIM scores (indicating their functional levels) and their caregivers’
MCSI scores (indicating their burden of care), supports literature comparing the hours of assistance needed
from caregivers daily in line with patients’ FIM scores. The hours of assistance needed from caregivers,
decrease (along with their burden of care) as the patients’ FIM scores, along with their functional levels,
increase (cf. Table II)33. The median FIM scores in this study indicate that patients only needed minimal
assistance upon discharge, which correlates with the median MCSI score, indicating that caregivers
experienced a minimal to moderate burden of care.
The researcher notes that burden of care experienced by caregivers is not necessarily related to the patient’s
physical function, and caregivers of patients with more cognitive than physical impairments, also
experience strain. This correlates with literature stating that cognitive abilities have a palpable influence on
patients’ abilities to optimally participate in activities of daily living such as social activities, managing
children, returning to work, or shopping for groceries, even if limited physical impairments are present.
The magnitude of cognitive impairments is not always obvious, which places a high burden on caregivers
to take care of patients with said impairments1. Patients’ cognitive abilities were also found to be a predictor
of burden of care60.
3.7 LIMITATIONS
The limitations associated with this study are firstly, that the answers of the caregivers are subjective and a
reflection of their perceived burden of care only. Caregivers had difficulty giving estimations, interpreted
questions differently, and it was difficult to obtain an accurate reflection of the exact number of hours spent
on each of their responsibilities in order to get a clear picture of their activity profiles, roles, and
occupations. One participant, for example, indicated that she spends 24 hours a day on supervision, but that
she also spends time on other responsibilities. The number of hours spent on each responsibility might thus
add up to more than 24 hours a day. Caregivers’ activity profiles might have been unbalanced even before
taking up their roles as caregivers. The researcher only aimed to give a description of their current activity
profiles.
54
Secondly, the study sample is fairly small and is not representative of the whole population of patients with
CVA, but only of patients and their caregivers discharged from the private inpatient rehabilitation unit
where this study was conducted.
It was not within the scope of this study to distinguish between factors such as culture and socio-economic
status of caregivers.
3.8 RECOMMENDATIONS
Recommendations with regard to clinical practice include the following. Firstly, it is suggested that the
transition between inpatient rehabilitation and discharge of the patient with CVA is improved. This might
be done through medical schemes incorporating funded programmes for patients with CVA, not only as
inpatients, but also post discharge for therapeutic home assessments, outpatient therapy, support groups for
caregivers and funding of professional caregivers.
Secondly, based on the results and conclusions drawn from this research, the researcher makes the following
recommendations with regards to future research. A need for further exploration regarding possible
intervention methods attempting to prevent/reduce burden of care post discharge exists. Possible avenues
or exploration are:
Re-admissions to inpatient rehabilitation units in order to address problems experienced at home;
Benefits of allowing patients more opportunities to go on trial leave in order to identify any
potential problems at home while still being admitted to the inpatient rehabilitation unit;
Initiating caregiver training from an earlier stage during the rehabilitation process and involving
caregivers in the therapy process;
Adapting caregiver training programmes in order to better equip caregivers for their new roles;
Facilitating the formation of support groups for caregivers and bringing them in contact with each
other; and
Appealing to public healthcare services to accomodate patients with medical schemes in order to
continue with outpatient therapy, should their medical schemes not be sufficient to fund private
outpatient therapy sessions.
Further research is also recommended in order to determine the level of independence of patients and burden
of care after discharge from other private inpatient rehabilitation units in order to compare results. This may
result in identifying trends regarding burden of care post discharge from private inpatient rehabilitation
units and for further investigation into the burden of care phenomenon. A follow-up study can also be done
55
on the same sample group after six or twelve months, in order to see if there were any changes in the burden
of care experienced after more time has passed.
The Occupational Therapy Association of Occupational Therapy’s (OTASA) position paper6 explaining
occupational therapy’s scope of practice in terms of rehabilitation contains limited information regarding
occupational therapists’ role with regard to family members and caregivers. The researcher recommends
that OTASA elaborate on this in future papers, as occupational therapy can play a vital role in family
members/caregivers’ health and well-being.
3.9 CONCLUSION
CVA often results in functional impairments, which can place a high burden of care on caregivers.
However, after completing a comprehensive private inpatient rehabilitation programme, it was found that
patients mainly need minimal assistance with activities of daily living upon discharge, and that caregivers
experience minimal to moderate strain at two months post discharge. Private inpatient rehabilitation can
thus play a crucial role in reducing caregivers’ burden of care. However, aspects such as financial, physical,
psychological, social, as well as personal factors are indicated as contributing to caregiver strain in varying
degrees. Often, caregivers’ occupations are affected by their new role of caregiving, putting them at risk of
unbalanced activity profiles. Little or no follow up with patients was conducted after discharge, which
further limits the support received by caregivers to fulfil their new role and occupation as caregivers. The
transition between private inpatient rehabilitation and discharge remains a concern. This needs to be
addressed in order to ensure that caregivers find meaning in their daily activities and to prevent occupational
loss, -disruption, and -deprivation.
56
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planning programme for older stroke patients and their family caregivers. Journal of Clinical
Nursing, 2008; 17: 2497–2508.
59. Gustafsson L & Bootle K. Client and carer experience of transition home from inpatient stroke
rehabilitation. Disability and Rehabilitation, 2013; 35: 1380–1386.
60. Van Heugten C, Visser-Meily A, Post M, Lindeman E. Care for carers of stroke patients: Evidence-
based clinical practice guidelines. Journal of Rehabilitation and Medicine, 2006; 38: 153–158.
60
CONCLUDING NOTES ON THE STUDY
As seen in both articles, high demands are placed on family members and informal caregivers, both in terms
of taking over caregiving of patients with CVA, and in establishing community integration and productive
activity of CVA survivors. This could cause caregivers to stop participating in occupations they find
meaningful, as their caregiver-related duties can be very time consuming. Aspects such as financial,
physical, psychological, social, and personal aspects could all further contribute to their burden of care.
The aim of this dissertation was to discuss, firstly, the current rehabilitation services for the CVA patient
with functional impairments in South Africa, and, secondly, the collective occupation of caregiving and the
burden of care experienced by informal caregivers. Therapeutic intervention is essential through all
rehabilitation outcome levels but is not always funded by medical schemes. Family members are often
expected to take up the role as caregivers, for which they are not always adequately prepared. Caregiver
training alone cannot sufficiently prepare them for their new occupation and co-occupation as caregivers,
resulting in a high burden of care. This is discussed in the first article, a literature review.
Secondly, factors associated with burden of care as experienced by caregivers of people with functional
impairments due to a CVA, after their discharge from a private rehabilitation unit in Bloemfontein was
investigated through a consecutive, non-randomised sample method two months post discharge. Aspects
which caregivers see as contributing to their burden of care at two months after discharge, including
financial, physical, psychological, social, and personal aspects, were investigated. The role and occupations
of the caregiver and how these relate to their perceived burden of care were further highlighted. Patients
mostly needed minimal assistance upon discharge with functional independence related tasks, and their
caregivers experienced minimal to moderate strain. However, caregivers’ occupational profiles seemed to
be unbalanced and they had limited support post discharge in terms of home based caregivers or outpatient
therapy services.
In drawing the two articles together in this dissertation, it becomes apparent that inpatient rehabilitation is
crucial in order to optimise patients’ functional abilities. However, the transition between private inpatient
rehabilitation and discharge is problematic, as inpatient rehabilitation does not necessarily address aspects
such as community reintegration. Furthermore, not all patients have access to funding and further support,
such as professional caregivers or outpatient therapy services. A variety of aspects contribute to caregivers’
perceived burden of care, resulting in unbalanced roles/occupations of caregivers. This needs to be
addressed in the rehabilitation process in order to prevent occupational loss.
61
The main recommendations, based on these articles, call for strategies which can be put in place in order to
prevent or reduce burden of care for caregivers after discharge. This needs to be implemented early on in
inpatient rehabilitation units, by implementing strategies such as intensive caregiver training prior to
discharge. This could aid in preparing family members/caregivers for their new occupation as caregivers,
as well as referrals to outpatient therapy services and support groups, if possible. The value of assisting
both patients and caregivers in finding meaning in their daily activities should also be addressed when
working with both parties during therapy or caregiver training.
More funding for home visits from home based caregivers or therapists, outpatient therapy services, and
professional caregivers is needed from medical schemes in order for patients to afford such services. Acute
hospitals, as well as inpatient rehabilitation units in the private sector, should consider the need for
specialised stroke units where patients can receive the best possible specialised care as soon as possible
after suffering the CVA. However, the efficacy of any or all of these strategies require further research in
order to ensure that not only patients, but also their caregivers, can maintain healthy, balanced lifestyles
and can reach their maximal potential as occupational beings.
i
APPENDIX A: INFORMATION DOCUMENT AND INFORMED CONSENT FORM FOR
PARTICIPANTS
INFORMED CONSENT DOCUMENT TO RESEARCH RESPONDENTS (PATIENTS)
Study title:
The perceived burden of care for caregivers of post discharged CVA patients with functional
impairments at a private rehabilitation unit in Bloemfontein.
To whom it may concern:
Introduction:
I, Mrs Lyndall Serfontein am doing research on the burden of care experienced by caregivers of patients
who have suffered strokes.
Invitation to participate:
We request to use your personal information in this research study.
What is involved in the study:
Background information will be obtained from you as a patient’s medical file, e.g. your medical history,
diagnosis, etc. A telephonic interview will be conducted two months after your discharge from Pasteur,
with your caregiver, regarding their experience of caring for you on a daily basis. Some questions might
be personal, e.g. if you have shown any progress, what functional problems are experienced by you,
etc.
Risks of being involved in the study:
No risks are anticipated for participating in this study, although your personal information will be used
in this study.
Benefits of being involved in this study:
By determining the burden of care experienced by caregivers of persons with strokes after discharge,
therapists might be helped to give more efficient caregiver training prior to discharge in the future. It
will also help to reduce future problems and burden of care experienced at home.
Participation is voluntary and you can withdraw participation at any time.
ii
Reimbursements:
You will receive no reimbursement and no costs are involved for participation in this study.
Confidentiality:
Efforts will be made to keep personal information confidential. Absolute confidentiality cannot be
guaranteed. Personal information may be disclosed if required by law. Results of this study may be
published, although no names will be made available in publications of this study.
Contact details of researcher – For further information/ reporting of study-related adverse events,
contact Mrs Lyndall Serfontein at Pasteur Hospital (051 522 6601).
Contact details of Secretariat and Chair: Health Sciences Research Ethics Committee, University
of the Free State – for reporting of complaints/problems: Telephone number (051) 4052812
CONSENT TO PARTICIPATE IN RESEARCH (PATIENTS)
You were requested to use your personal information in a research study.
You were informed about the study by Mrs Lyndall Serfontein
You were informed about all possible risks and that no reimbursement or costs are involved for your
participation in this study.
You can contact Mrs Lyndall Serfontein at 051 522 6601 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 of the UFS at
telephone number (051) 4052812 if you have questions about your rights as a research subject.
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.
iii
The research study, including the above information has been verbally described to me as patient. I give
permission to my caregiver to make known some information about me in his / her participation in this
study. I also give consent that my background information may be obtained from my medical file.
________________________ __________________
Signature of patient or family member Date
_____________________ __________________
Signature of witness Date
iv
INFORMED CONSENT DOCUMENT TO RESEARCH RESPONDENTS (CAREGIVERS)
Study title:
The perceived burden of care for caregivers of post discharged CVA patients with functional
impairments at a private rehabilitation unit in Bloemfontein.
To whom it may concern:
Introduction:
I, Mrs Lyndall Serfontein am doing research on the burden of care experienced by caregivers of patients
who have suffered strokes.
Invitation to participate:
We invite the caregiver of the patient who suffered a stroke, to participate in this research study.
What is involved in the study:
This is a telephonic interview which will be conducted with caregivers of patients who have suffered
strokes, two months after discharge from Pasteur, in order to determine what your burden of care is.
You will thus receive a telephone call from the researcher or research assistants and asked to answer
some questions regarding your experience as caregivers. The interview will take more or less 20 – 30
minutes. The results of the study will be made known to Pasteur after completion of the study. You are
welcome to inquire about the results of the study.
Risks of being involved in the study:
No risks are anticipated for participating in this study, although some questions might be experienced
as personal or sensitive. However, you are requested to ensure that the patient you are taking care of, is
safe during your participation in this study.
Benefits of being involved in this study:
By determining the burden of care experienced by caregivers of persons with strokes after discharge,
therapists might be helped to give more efficient caregiver training prior to discharge in the future. It
will also help to reduce future problems and burden of care experienced at home.
Participation is voluntary and you can withdraw participation at any time. If the time of the telephonic
interview is inconvenient and you prefer to participate in the study at a later stage, an alternative time
can be scheduled. If the patient needs your help during the interview, the interview can be stopped and
an alternative time can be scheduled.
v
Reimbursements:
You will receive no reimbursement and no costs are involved for participation in this study.
Confidentiality:
Efforts will be made to keep personal information confidential. Absolute confidentiality cannot be
guaranteed. Personal information may be disclosed if required by law. Results of this study may be
published, although no names will be made available in publications of this study.
Contact details of researcher – For further information/ reporting of study-related adverse events,
contact Mrs Lyndall Serfontein at Pasteur Hospital (051 522 6601).
Contact details of Secretariat and Chair: Health Sciences Research Ethics Committee, University
of the Free State – for reporting of complaints/problems: Telephone number (051) 4052812
CONSENT TO PARTICIPATE IN RESEARCH (CAREGIVERS)
You were requested to use your personal information in a research study.
You were informed about the study by Mrs Lyndall Serfontein
You were informed about all possible risks and that no reimbursement or costs are involved for your
participation in this study.
You can contact Mrs Lyndall Serfontein at 051 522 6601 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 of the UFS at
telephone number (051) 4052812 if you have questions about your rights as a research subject.
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.
vi
The research study, including the above information has been verbally described to me as caregiver. I
understand what my involvement in the study means and I voluntary agree to participate.
________________________ __________________
Signature of participant Date
_____________________ __________________
Signature of witness Date
CONSENT TO PARTICIPATE IN RESEARCH (TELEPHONIC)
Your were requested to participate in the research study as described and informed about the study,
including possible risks, that you will receive no reimubursement for participation in this study, that no
costs are involved and that your participation is voluntary.
Do you understand and agree to participate in this study? Yes / No
________________________
Signature of witness
________________________
Date
vii
APPENDIX B: INFORMATION DOCUMENT AND PERMISSION LETTERS FROM THE
HOSPITAL MANAGER
viii
ix
x
xi
xii
APPENDIX C: NON-STANDARDISED QUESTIONNAIRE
Non-standardised questionnaire for caregivers For office use
Study number of participant…………………………………………… 1-3
Contextual Information
1. Do you give informed consent to participate in this 4
2. questionnaire?
1 Yes
2 No
2. Date and time of call
1 Attempt 1…………………………………………..
2 Attempt 2………………………………………….. 5-14
3 Attempt 3…………………………………………..
15-24
4 Attempt 4…………………………………………..
25-34
5 Attempt 5…………………………………………..
35-44
45-54
D D M M Y Y H H M M
3. Gender of caregiver
1 Male 55
2 Female
4. What is your age?
……………………………………………years 56-57
5. What is your relationship with the patient?
1 Spouse 58
2 Friend
3 Parent
4 Child
5 Sibling
6 Cousin
7 Other, specify………………………………………
59-60 6. How long have you been the patient's caregiver?
Less than one month
One to two months 61
More than two months
7. Are you the patient's caregiver for at least four hours during
day time?
1 Yes 62
2 No
8. Besides you, are there any other caregivers envolved in the
patients care? How many?
1 Yes 63
2 No
Amount………………………………………………………
64
xiii
9. Is the patient staying with you? 65
1 Yes
2 No
10. Has the patient acquired any other illnesses or injuries since he / she has been
discharged? 66
1 Yes
2 No
11. If yes, what illnesses or injuries have the patient acquired? 67-68
…………………………………………………………………………… 69-70
…………………………………………………………………………… 71-72
……………………………………………………………………………
……………………………………………………………………………
Caregivers' occupations, performance patterns and well-being
12. Do you have a full time job? 73
1 Yes
2 No
74-75
13. What work are you doing?
……………………………………………………………….. …………………………………………………………………….
14. How many hours do you work per day? 76-77
………………………………………………………………..
15. More or less how many hours do you spend on caregiving / supervision per day? 78-79
………………………………………………………………..
16. What other responsibilities do you have besides caregiving duties? 80
1 Children
2 Work
3 Household tasks
4 Recreation
5 Other………………………………………………….. 1 81 Children
2 Work
17. How many hours do you spend on your other responsibilities?
Children…………………………..hours 82-83
Work………………………..……..hours 84-85
Household tasks…………………hours 86-87
Recreation………………………..hours 88-89
Other…………….…….……….…..hours 90-91
18. Do you think that the burden of care could have been relieved with longer time
in rehabilitation? 92
1 Yes
1 Yes
2 No 2 No
19. Do you feel that you are spending too little time, too much time or an adequate
amount of time on caregiving related duties? 93
1 Too little time
2 Adequate time
3 Too much time
1 Too little time
2 Adequate time
xiv
20. Are you healthy at the moment? 94
1 Yes
2 No
21. Do you have any previous experience as a caregiver? 95
1 Yes
2 No
C areg6i5v ers' p erf orma nce skills
2 2. W hat is your level of education? 96
1 P rimar y sch ool
2 Secondary school
3 Diploma
66
4 Degree
5 P ost g radua te
6 Other, specify…………………………………………………… 97
67-68
69-70
2 3. W h at tra7i1n-i7n2g did y ou receive to prepare you for your role as caregiver? 98
1 C aregi ver tr aining at Pasteur
2 O ther, speci fy………………………………………………………
99
2 4. Di d you atten d Pas teur's caregiver training?
100
1 Y es
723 No
C areg ivers ' view of p atients' client factors
2 5. W i th wh7ic4h-7 o5f the f ollowing occupations do you physically assist the
p atient on a daily basis ?
1 E ating 101
2 G7r6o-o
7m7 ing 102
3 B athin g 103
4 Up per body dressing 104
5 L7o8w-e7r9 b ody dressing 105
6 To iletin g 106
7 Bla dde r man agement 107
880 Bow el m ana gement 108
9 B ed to c hair transfer 109
10 Toilet transfer
11 Shower transfer 110-111
12 Locomotion 112-113
13 Stairs 114-115
116-117
xv
26. With which of the following activities do you provide supervision to the
patient?
118
1 Eating
119
2 Grooming
120
3 Bathing
121
4 Upper body dressing
122
5 Lower body dressing
123
6 Toileting
124
7 Bladder management
125
8 Bowel management
126
9 Bed to chair transfer
127-128
10 Toilet transfer
129-130
11 Shower transfer
131-132
12 Locomotion
133-134
13 Stairs
135
27. In your opinion, did the patient's abilities improve, deteriorate or remained
the same since discharge / since you started caring for the patient?
1 Improved
2 Deteriorated
3 Remained the same
136
28. Does the patient receive outpatient therapy?
1 Yes
2 No
137
29. What therapy does the patient receive?
1 Occupational therapy
2 Physiotherapy
3 Speech therapy 138
4 Other…………………………………………………………
139
30. How often do they receive outpatient therapy?
1 Less than once a month
2 Once a month
3 Once every two weeks
4 Once a week
5 2 - 3 times a week
6 More than 3 times a week
140-
141
31. In what town do you currently stay?
…………………………………………………………………
xvi
Environmental factors
32. How many rooms are in the house where you provide care? 142-14 3
………………………………………………………………..
33. Does the house have an indoor bathroom? 144
1 Yes
2 No
34. If yes, is there a bath, a shower or both a bath and a shower in the bathroom? 145
1 Bath
2 Shower
3 Both
35. Does the house have stairs in front of your house? If yes, how many? 146
1 Yes
2 No
……………………………………stairs 147-14 8
36. Is the house adequately adapted for the patient's needs?
149
1 Yes
2 No
Motivate your answer: 150-15 1
…………………………………………………………………………………………………. 152-153
…………………………………………………………………………………………………………… ………… … ……1…54…-1…55… …… ..
…………………………………………………………………………………………………………… ………… … ……1…56…-1…57… …… ..
37. What assistive devices are the patient currently using?
(Mark all the appropriate options)
1 Wheelchair 158
2 Commode 159
3 Walking aid 160
4 Bath board 161
5 Grab rail 162
6 Transfer board 163
7 None 164
8 Other, specify………………………………………. 165
38. Are the assistive devices sufficient for the patients needs? If not, what else 166
do you need?
1 Yes
2 No
……………………………………………………………… 167-16 8
169-17 0
171-172
xvii
APPENDIX D: BACKGROUND INFORMATION DOCUMENT
Background information of patients with CVA For Office Use
Study number of patient and his / her caregiver 1-3
1. Language of preference 4
1 Afrikaans
2 English
3 South Sotho
2. Age of the patient 5-7
………………………………………..years
3. Gender 8
1 Male
2 Female
4. FIM scores
(Score of 1-7)
9
Eating
10
Grooming
11
Bathing
12
Upper body dressing
13
Lower body dressing
14
Toileting
15
Bladder management
16
Bowel management
17
Bed to chair transfer
18
Toilet transfer
19
Shower transfer
20
Locomotion
21
Stairs
22-23
Motor FIM subscore
24
Cognitive comprehension
25
Expression
26
Social interaction
27
Problem solving
28
Memory
29-30
Cognitive FIM subscore
31-32
Total
xviii
5. Date of admission (dd/mm/yy)……………………………………
d d m m y
6. Date of discharge (dd/mm/yy)……………………………………
7. Time spent in rehabilitation
d d m m y
at Pasteur
45-46
1 Less than 1 week
2 1-2 weeks
3 2-3 weeks
4 3-4 weeks
5 4-5 weeks
6 5-6 weeks
7 6-7 weeks
8 7-8 weeks
9 8-9 weeks
10 9-10 weeks
11 10-11 weeks
12 11-12 weeks
13 More than 12 weeks
8. Was it the patient's first CVA
1 Yes
47
2 No
9. Other medical conditions and medical history
48-49
50-51
52-53
xix
APPENDIX E: STANDARDISED QUESTIONNAIRE – MODIFIED CAREGIVER STRAIN
INDEX
Issue Number 14, Revised 2013 Editor -in-Chief: Sherry A.
Greenberg, PhD(c) MSN, GNP-BC New
York University College of Nursing
The Modified Caregiver Strain Index (MCSI)
By Lisa L. Onega, PhD, RN, Radford University School of Nursing
WHY: Informal supporters provide the majority of long-term care to chronically disabled older adults. Caregiving
has been recognized as an activity with perceived benefits and burdens. Caregivers may be prone to depression,
grief, fatigue, financial hardship, and changes in social relationships. They may also experience physical health
problems (Thornton & Travis, 2003). Perceived caregiver strain has been associated with premature
institutionalization for care recipients along with reports of unmet needs. Screening tools are useful to identify
families who would benefit from a more comprehensive assessment of the caregiving experience.
BEST TOOL: The Modified Caregiver Strain Index (MCSI) is a tool that can be used to quickly screen for
caregiver strain with long-term family caregivers. It is a 13-question tool that measures strain related to care
provision. There is at least one item for each of the following major domains: Financial, Physical, Psychological,
Social, and Personal. This instrument can be used to assess individuals of any age who have assumed the
caregiving role for an older adult. The Modified Caregiver Strain Index (MCSI) is a more recent version of the
Caregiver Strain Index (CSI) developed in 1983. The MCSI was modified and developed in 2003 with a sample
of 158 family caregivers providing assistance to older adults living in a community-based setting. Scoring is 2
points for each ‘yes’ and 1 point for each ‘sometimes’ response. The higher the score, the higher the level of
caregiver strain (Travis et al., 2003; Thornton & Travis, 2003).
VALIDITY AND RELIABILITY: The internal reliability coefficient is slightly higher (=.90) than
the coefficient originally reported for the CSI in 1983 (=.86). Two-week retest data for one-third of the caregiving
sample (n=53) was available and resulted in a test-retest reliability coefficient of .88 (Thornton & Travis, 2003).
STRENGTHS AND LIMITATIONS: The MCSI is a brief, easy to use, self-administered instrument. Long-
term family caregivers were not comfortable with the dichotomous choice on the CSI; the modified instrument
provides the ability to choose a middle category response best suited to some situations (Travis et al., 2003).
The MCSI clarifies and updates some of the items on the original instrument. The tool is limited by lack of a
corresponding subjective rating of caregiving impact. Caregiver strain scores are not categorized as low,
moderate, or high, so professional judgment is needed to evaluate by total score the level of caregiver strain.
The tool effectively identifies families who may benefit from more in-depth assessment and follow-up.
FOLLOW-UP: The higher the score on the MCSI, the greater the need for more in-depth assessment to facilitate
appropriate intervention. Additional items and further efforts to develop and test a set of subscales could enhance
the applicability of the instrument for research and practice. The older adult care recipient’s cognitive status and
problematic behaviors should be assessed, as well as the caregiver’s perception of role overload or deprivation in
key relationships, goals, or activities. Family conflict, work role-caregiving conflict, financial strain, and caregiver
social support are also important variables in the overall caregiving experience. Additional work with highly
strained long-term caregivers who are receiving little or no formal services is indicated.
MORE ON THE TOPIC:
Best practice information on care of older adults: www.ConsultGeriRN.org.
Cassey, M.Z. (2007). Incorporating the National Guideline Clearinghouse into evidence-based nursing practice. Nursing Economics, 25(5),
302-304.
Dilworth-Anderson, P., Goodwin, P.Y., & Williams, S.W. (2004). Can culture help explain the physical health effects of caregiving over time
among African
American caregivers? The Journals of Gerontology, 59B(3), S138-S145.
xx
Douglas, S.L., Daly, B.J., Kelley, C.G., O’Toole, E., & Montenegro, H. (2005). Impact of a disease management program upon caregivers of
chronically critically ill patients. Chest, 128(6), 3925-3936.
Gallagher-Thompson, D., Solano, N., Coon, D., & Areán, P. (2003). Recruitment and retention of Latino dementia family caregivers in
intervention research:
Issues to face, lessons to learn. The Gerontologist, 43(1), 45-51.
Harvath, T.A., Flaherty-Robb, M., White, D.L., Talerico, K.A., & Hayden, C. (2007). Best practices initiative: Nurturing partnerships that
promote change.
Journal of Gerontological Nursing, 33(11), 19-26.
Honea, N.J., Brintnall, R., Given, B., Sherwood, P., Colao, D.B., Somers, S.C., & Northouse, L.L. (2008). Putting evidence into practice:
Nursing assessment and interventions to reduce family caregiver strain and burden. Clinical Journal of Oncology Nursing, 12(3), 507-
516.
Pinquart, M., & Sörensen, S. (2007). Correlates of physical health of informal caregivers: A meta-analysis. Journals of Gerontology Series
B: Psychological
Sciences & Social Sciences, 62B(2): P126-P137.
Robertson, S.M., Zarit, S.H., Duncan, L.G., Rovine, M.J., & Femia, E.E. (2007). Family caregivers’ patterns of positive and negative affect.
Family Relations, 56(1), 12-23.
Robinson, B.C. (1983). Validation of a Caregiver Strain Index. Journal of Gerontology, 38(3), 344-348.
Sorrell, J.M. (2007). Caring for the caregivers. Journal of Psychosocial Nursing, 45(11), 17-20.
Tang, S.T., Li, C.Y., & Liao, Y.C. (2007). Factors associated with depressive distress among Taiwanese family caregivers of cancer patients
at the end of life.
Palliative Medicine, 21(3), 249-257.
Thornton, M., & Travis, S.S. (2003). Analysis of the reliability of the Modified Caregiver Strain Index. The Journals of Gerontology, 58B(2),
S127-S132.
Travis, S.S., Bernard, M.A., McAuley, W.J., Thornton, M., & Kole, T. (2003). Development of the Family Caregiver Medication
Administration Hassles Scale.
The Gerontologist, 43(3), 360-368.
Weiss, C.O., González, H.M., Kabeto, M.U., & Langa, K.M. (2005). Differences in amount of informal care received by non-Hispanic whites
and Latinos in a nationally representative sample of older Americans. JAGS, 53(1), 146-151.
Permission is hereby granted to reproduce, post, download, and/or distribute, this material in its entirety only for not-for-profit educational purposes only,
provided that
The Hartford Institute for Geriatric Nursing, New York University, College of Nursing is cited as the source. This material may be downloaded and/or
distributed in electronic format, including PDA format. Available on the internet at www.hartfordign.org and/or www.ConsultGeriRN.org. E-mail
notification of usage to: hartford.ign@nyu.edu.
xxi
Modified Caregiver Strain Index
Directions: Here is a list of things that other caregivers have found to be difficult. Please put a checkmark in the
columns that apply to you. We have included some examples that are common caregiver experiences to help you
think about each item. Your situation may be slightly different, but the item could still apply.
Yes, On a Regular Basis=2 Yes, Sometimes =1 No=0
My sleep is disturbed ____________ ____________ ___________
(For example: the person I care for is in and out of bed
or wanders around at night)
Caregiving is inconvenient ____________ ____________ ___________
(For example: helping takes so much time or it’s a
long drive over to help)
Caregiving is a physical strain ____________ ____________ ___________
(For example: lifting in or out of a chair; effort or
concentration is required)
Caregiving is confining ____________ ____________ ___________
(For example: helping restricts free time or I cannot go visiting)
There have been family adjustments ____________ ____________ ___________
(For example: helping has disrupted my routine; there is no
privacy)
There have been changes in personal plans ____________ ____________ ___________
(For example: I had to turn down a job; I could not go on
vacation)
There have been other demands on my time ____________ ____________ ___________
(For example: other family members need me)
There have been emotional adjustments ____________ ____________ ___________
(For example: severe arguments about caregiving)
Some behavior is upsetting ____________ ____________ ___________
(For example: incontinence; the person cared for has trouble
remembering things; or the person I care for accuses people of
taking things)
It is upsetting to find the person I care for has changed
so much from his/her former self ____________ ____________ ___________
(For example: he/she is a different person than he/she used to be)
There have been work adjustments ____________ ____________ ___________
(For example: I have to take time off for caregiving duties)
____________ ____________ ___________
Caregiving is a financial strain
xxii
I feel completely overwhelmed ____________ ____________ ___________
(For example: I worry about the person I care for; I have
concerns about how I will manage)
[Sum responses for “Yes, on a regular basis” (2 pts each) and “yes, sometimes” (1
pt each)]
Total Score =
Thornton, M., & Travis, S.S. (2003). Analysis of the reliability of the Modified Caregiver Strain Index. The Journal of Gerontology, Series B,
Psychological Sciences and Social Sciences, 58(2), p. S129. Copyright © The Gerontological Society of America. Reproduced by
permission of the publisher.
The Hartford Institute would like to acknowledge the original author of this Try This® issue: M. Terry Sullivan.
xxiii
APPENDIX F: ETHICAL CLEARANCE DOCUMENT
xxiv
APPENDIX G: PROOF OF LANGUAGE EDITING
24 August 2018
DECLARATION
Hereby I, Johanna Gertruida (Hanta) Henning, declare that I carried out the proofreading and
language editing of the Master’s Degree dissertation by Lyndall Serfontein, titled The
Perceived Burden of Care for Caregivers of Post Discharged CVA Patients with Functional
Impairments at a Private Rehabilitation Unit in Bloemfontein, submitted in accordance with
the requirements for the Magister Degree in Occupational Therapy at the University of the
Free State.
JG Henning
henningjg@ufs.ac.za
0824482726 / 0514013957
xxv
APPENDIX H: PROOF OF PLAGIARISM CHECK
Fina l Dissertation
ORIGINALITY REPORT
14%
13% 9% 10% SIMILARITY INDEX
INTERNET SOURCES PUBLICATIONS STUDENT PAPERS
PR IMARY SOURCES
Submitted to 76830
1
Student Paper 2%
sajot.co.za 2
Internet Source 1%
scholar.sun.ac.za 3
Internet Source
1%
www.sajot.co.za 4
Internet Source <1%
Submitted to University of Witwatersrand
5
Student Paper <1%
open.uct.ac.za 6
Internet Source
<1%
Thomas, B., S. Wulf, B. Bikbov, N. Perico, M.
7 C ortinovis, K. Courville de Vaccaro, A. <1%
Flaxman, H. Peterson, A. Delossantos, D.
Haring, R. Mehrotra, J. Himmelfarb, G.
Remuzzi, C. Murray, and M. Naghavi.
"Maintenance Dialysis throughout the World in
Years 1990 and 2010", Journal of the American
Society of Nephrology, 2015.
Publication
www.scielo.org.za 8
Internet Source <1%
revalidatiegeneeskunde.nl 9
Internet Source <1%
journals.sagepub.com 10
Internet Source
<1%
www.ebrsr.com 11
Internet Source <1%
www.scielo.br 12
Internet Source <1%
theses.gla.ac.uk 13
Internet Source <1%
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awo .mumc.maastrichtuniversity.nl
28 Internet Source
<1%
www.redalyc.org 29
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wiredspace.wits.ac.za 30
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mijn.bsl.nl 31
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mro.massey.ac.nz 32
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connection.ebscohost.com 33
Internet Source <1%
Ilona Jerabek, Deborah Muoio. "chapter 4 The 34 <1%
Stress Profile", IGI Global, 2017
Publication
Lawang, Wannarat, Dell Elizabeth Horey, and 35 <1%
Jeanine Blackford. "Family caregivers of adults with acquired physical disability: Thai casecontrol study :
Thai caregivers of disabled adults", International Journal of Nursing Practice, 2013.
Publication
Aggar, Christina, Susan Ronaldson, and Ian D
36 Cameron. "Residential respite care is <1%
associated with family carers experiencing
financial strain : Family carers experience financial strain", Australasian Journal on
Ageing, 2012.
Publication
Vogler, Jana, Anke-Maria Klein, and Andreas 37
<1%
Bender. "Long-term health-related quality-oflife in patients with acquired brain injury and their
caregivers", Brain Injury, 2014.
Publication
Submitted to University of Mary Hardin-Baylor 38
Student Paper <1%
eprints.kingston.ac.uk 39
Internet Source <1%
www0.sun.ac.za 40
Internet Source <1%
Submitted to Cardiff University
41
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Submitted to University of Newcastle
42
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Submitted to Griffth University
54
Student Paper <1%
Submitted to University of Liverpool
55
Student Paper <1%
www.scribd.com
56 Internet Source <1%
dspace.lboro.ac.uk 57
Internet Source <1%
Submitted to La Trobe University
58
Student Paper
<1%
Amy H. Ng, Ekta Gupta, Rhodora C. Fontillas, 59 <1%
Swati Bansal et al. "Patient-Reported
Usefulness of Acute Cancer Rehabilitation",
PM&R, 2017
Publication
Submitted to Mahidol University
60
Student Paper <1%
www.biomedexperts.com 61
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Submitted to Grand Canyon University
62
Student Paper <1%
www.ajol.info 63
Internet Source <1%
Barbara J. Lutz. "Rethinking Intervention <1%
64
Strategies in Stroke Family Caregiving",
Rehabilitation Nursing, 07/08/2010
Publication
avehjournal.org
65 Internet Source <1%
Submitted to Laureate Higher Education Group 66
Student Paper <1%
Chary, A., A. D. Tice, L. P. Martinelli, L. A. 67 <1%
Liedtke, M. S. Plantenga, and L. J.
Strausbaugh. "Experience of Infectious
Diseases Consultants with Outpatient
Parenteral Antimicrobial Therapy: Results of an Emerging Infections Network Survey", Clinical
xxviii
dns2.asia.edu.tw 79
Internet Source <1%
www.biomedcentral.com 80
Internet Source <1%
ses.library.usyd.edu.au 81
Internet Source <1%
digitalarchive.maastrichtuniversity.nl 82
Internet Source
<1%
openscholarship.wustl.edu 83
Internet Source <1%
www.samj.org.za 84
<1%
Kumar, Rekha. "Spectrum of metastatic
85 neoplasms of the brain: A clinicopathological <1% study in a tertiary care cancer centre.(Original
Article)(Report)", Neurology India
Publication
Mohammad, Jehad Habib, Farzana Quoquab 86 <1%
B. "Organizational justice and organizational citizenship behavior in Higher Education
Institution.", Global Business and Management
Research:, Jan 2010 Issue
Publication
www.publishing.globalcsrc.org 87
Internet Source <1%
dspace.nwu.ac.za 88
Internet Source <1%
jneuroengrehab.biomedcentral.com 89
Internet Source <1%
wels.open.ac.uk 90
Internet Source <1%
"Ethnogeriatrics", Springer Nature, 2017
91
Publication <1%
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Submitted to Chicago State University
92
Student Paper <1%
Toughieda Elloker, Anthea Rhoda, Ayorinde
93 Arowoiya, Isa Usman Lawal. "Factors predicting <1%
community participation in patients living with stroke, in the Western Cape, South Africa", Disability and
Rehabilitation, 2018
Publication
Joseph E. Gaugler. "The longitudinal <1%
94 ramifications of stroke caregiving: A systematic review.", Rehabilitation Psychology, 2010
Publication
Kerry Byrne, Joseph B. Orange, Catherine <1%
95
Ward-Griffin. "Care Transition Experiences of
Spousal Caregivers", Qualitative Health
Research, 2011
Publication
"Geriatrics Models of Care", Springer Nature <1%
96
America, Inc, 2015
Publication
www.iiste.org 97
Internet Source <1%
Andaleeb Abu Kamel. "Depression and <1%
98 caregiver burden experienced by caregivers of Jordanian patients with stroke : Caregivers' depression and
burden", International Journal of Nursing Practice, 04/2012
Publication
ajod.org 99
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revistas.javeriana.edu.co 100
Internet Source <1%
scholar.ufs.ac.za:8080
101 Internet Source <1%
spotidoc.com 102
Internet Source <1%
trialsjournal.biomedcentral.com 103
Internet Source
<1%
Submitted to Brunel University
104
Student Paper <1%
xxx
Exclude quotes On Exclude matches < 5 words
Submitted to University of Arizona
Exclude bibliography On
105
Student Paper <1%
dlib.bc.edu 106
Internet Source <1%
bromley.mylifeportal.co.uk 107
Internet Source <1%
wiredspace.rcpsych.org 108
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ltu.diva-portal.org 109
Internet Source <1%
issuu.com 110
Internet Source <1%
Angelo, Jennifer, and Linda Wilson. "Exploring
111 Occupation Roles of Hospice Family <1%
Caregivers from Māori, Chinese and Tongan Ethnic Backgrounds Living in New Zealand :
Occupations of Hospice Family Caregivers", Occupational Therapy International, 2014.
Publication
Lisa L. Onega. "Helping Those Who Help <1%
112
Others : The Modified Caregiver Strain Index.",
AJN American Journal of Nursing, 09/2008
Publication
"Rehabilitation Medicine for Elderly Patients", 113 <1%
Springer Nature, 2018
Publication
"International Handbook of Occupational <1%
114
Therapy Interventions", Springer Nature, 2015
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Final Dissertation
GRADEMARK REPORT
FINAL GENERAL COMMENTS
GRADE
/0
Instructor