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Ward, Emma (2014)
Languages: English
Types: Unknown
The aim of the systematic literature review was to gain an in-depth understanding of how parents of children with an autism spectrum diagnosis experience stigma and in what ways they might manage this. Electronic databases and reference lists of published articles were systematically searched and six qualitative articles were selected for inclusion in the review. Findings from the studies formed the data for a thematic synthesis. Four interconnected themes were identified which capture parents experience of stigma: parent blame/responsibility; hidden disability; diagnosis/label and social isolation/avoidance. A further four themes were identified to highlight ways in which parents may manage this: diagnosis as a weapon; celebrating; increased resilience over time and planning and avoidance. The review suggests that negotiating public spaces may continue to be a challenge for some parents who experience both felt and enacted stigma.\ud \ud The aim of the study was to explore how parents share an autism spectrum diagnosis with their child and the processes which may be involved in this. Literature regarding parental experiences of autism assessment and diagnosis indicate that this is a highly emotive time for both parent and child and highlights multiple factors which may impact on the sharing process. There is also an indication in the literature that there is often a delay between the autism diagnosis being confirmed and this being shared with the child. In the absence of autism specific research, literature pertaining to diagnosis disclosure in developmental disabilities and in paediatric chronic illness is examined, outlining a range of emotional and social factors which may shape parental decisions of whether to share their child’s diagnosis with them. \ud \ud The researcher adopted a critical realist position and employed a qualitative approach to explore this under-researched area. A total of 10 parents were recruited to the study and participated in a semi-structured interview. Transcribed interviews were analysed using thematic analysis. A secondary thematic analysis was undertaken to produce a leaflet reflecting the accounts shared by the group of parents in the study. It is hoped that this may be useful to other parents who are contemplating sharing an autism spectrum diagnosis with their child and the professionals who support them. \ud \ud Three inter-connected themes were identified, each with further sub-themes: (1) Sharing is a process: naming autism, exploring and meaning-making and acceptance and integration; (2) Parental motivation to share: providing an explanation and protection and (3) Parental management of sharing: parental preparedness, perceived child preparedness and approach and strategies. Sharing is a process and its related sub-themes are discussed in the journal paper, whilst the remaining themes and sub-themes are presented in the extended paper.\ud \ud The findings illustrate that sharing an autism diagnosis with one’s child is a complex and dynamic process involving the balancing of many parent, child and social factors. Commonalities with previous literature are discussed alongside some alternative insights gained. The thesis concludes with personal reflections of aspects of the research process including the nature of autism as a diagnosis and the potential ethical issues raised when considering whether this is shared with children or not.
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