Resilience in the presence of fragile X syndrome : a multiple case study
Fourie, Chantel Lynette
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The purpose of this study was to explore what contributes to resilience in females diagnosed with Fragile X Syndrome. Fragile X Syndrome can be defined as an inherited (genetic) condition that causes mental impairment, attention deficit and hyperactivity, anxiety and unstable mood, autistic behaviours, hyper-extensible joints, and seizures. I became aware of Fragile X Syndrome during my time as a live-in caretaker to an adolescent female who was diagnosed with Fragile X Syndrome. Because she coped with her disability so resiliently, I was encouraged to explore what contributes to resilience in females diagnosed with Fragile X Syndrome. I followed a qualitative approach, anchored in the interpretivist paradigm. This means that I tried to understand the resilience of females diagnosed with Fragile X Syndrome through the meanings that the participants in my study assigned to them. Furthermore, I worked from a transformative paradigm, which meant that I was interested in changing the traditionally negative ways in which females diagnosed with Fragile X Syndrome are seen. I followed a multiple case study approach, which included four case studies. I conveniently selected the first participant, but realised that convenience sampling was not very credible for a qualitative case study. An Advisory Panel was then used to purposefully recruit three more participants. In order to explore what contributed to their resilience, I made use of interviews, observations, and visual data collection. I also interviewed adults (e.g. parents, teachers and consulting psychologists) who were significantly involved in the lives of my participants. My findings suggest that resilience in females with Fragile X Syndrome is rooted in protective processes within the individual as well as within her family and environment. Because my findings do not point to one specific resource, my study underscores newer understandings of resilience as an Eco systemic transaction. Most of the resilience-promoting resources noted by the participants in my study as contributing to their resilience have been identified as resilience-promoting in previous studies. Although the themes that emerged in my study have been reported in resilience previously, I make a contribution to theory because I link traditional resilience-promoting resources to resilience in females diagnosed with Fragile X Syndrome. Peer support was previously reported as a resilience-promoting resource, but in my study I noticed that the main source of peer support came from peers who were also disabled. Furthermore, my study transforms how we see females diagnosed with Fragile X Syndrome. This transformation encourages communities and families to work together towards resilience in females diagnosed with Fragile X Syndrome.
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