The psychosocial experiences of adolescents with juvenile idiopathic arthritis
Aitken, Sharon Anne
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The aim of this study was to explore and describe the psychosocial experiences of South African adolescents with juvenile idiopathic arthritis (JIA). Consequently, rich, thick descriptions of their experiences and understandings of living with JIA were sought from seven individuals with JIA and their parents and situated within developmental psychopathology and resilience theory. JIA is one of the most common chronic inflammatory diseases in childhood and adolescence. Notably, it is a debilitating auto-immune disease which has an adverse effect on the biopsychosocial functioning of children and adolescents as it causes high levels of chronic pain and fatigue. Despite an estimated prevalence of 18,700 cases in South Africa, only medical research has been conducted in the field of JIA in this country. Moreover, international psychology studies are mainly pathogenic in stance with only a few studies exploring resilience processes and well-being. In addition, most studies do not differentiate between child and adolescent participants. Hence, there is a need for both international and specifically South African qualitative psychological research that explores both the risk and the resilience processes that impact on adolescents with JIA. More specifically, an exploration of adolescents’ understandings of their adaptive processes and the possibility of experiencing well-being in illness is needed. A multiple case study approach was chosen for this research. The participants were selected from the Western Cape and Gauteng provinces by using purposive and snowball sampling. Each case study consisted of an adolescent participant with JIA whose age ranged between 15 and 18 years of age and a parent participant. Two semi-structured interviews were conducted with the adolescent participants, while the parent participants were interviewed once. Thereafter, the data was analysed in a twofold, iterative process that made use of multilevel and thematic analyses. The final stages of analysis were guided by a developmental psychopathology framework and resilience theory. Three main themes were identified – namely, multisystem risk processes, multisystem resilience processes, and adapting positively to living with JIA. In this regard, the findings indicated that the symptoms generated by the disease resulted in a cascade of transactions within and between the biopsychosocial systems, resulting in cumulative risk processes. However, over time, resilience processes developed in the biopsychosocial systems, which seemed to enable the adolescent participants’ positive adaptation to JIA. This study has provided an initial foundation for further research in South Africa and has attempted to present the complexity of the multisystemic transactions that are involved in living with JIA. It has made valuable contributions to psychological research in the fields of JIA, developmental psychopathology, adolescent development, and adolescent resilience and well-being.