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Title: A narrative analysis of how parents of children with Down's Syndrome experience and adjust to their child receiving an additional diagnosis of Autism Spectrum Disorder
Author: Lambert, Katherine
ISNI:       0000 0004 7972 326X
Awarding Body: University of Surrey
Current Institution: University of Surrey
Date of Award: 2019
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Background: It was previously considered that Down's Syndrome (DS) and Autism Spectrum Disorder (ASD) could rarely co-occur. However, research indicates variable but high rates of ASD in children with DS. While research supports the concept that individuals with the dual-diagnosis of Down's Syndrome and Autism Spectrum Disorder (DS-ASD) present with features that are distinct from what one might expect from a child with DS without ASD, and despite evidence of potential emotional and practical implications of having a child with a disability, parents' experiences of DS-ASD have largely been overlooked. This study sought to explore how parents of children with DS experience and make sense of their child's additional ASD diagnosis. Method: Six parents of children with DS-ASD were invited to tell their stories. Transcripts were analysed using a narrative approach, focusing on how participants narrated their stories and made sense of their experiences. Results: Narrative themes were identified across the transcripts. A tentative model proposed a complex, non-linear process whereby parents reflect on their sense of belonging, understanding of DS-ASD and what it means to them, their identity and parental role. Conclusions: The findings demonstrate the challenging nature and complexity of what it means to parent a child with DS-ASD and how parents make sense of this. While further research is required to gather a broader range of parental experiences, the findings provide some evidence for support specifically for parents of children with DS-ASD, ideas for which, and how this could facilitate future research opportunities are discussed.
Supervisor: Gleeson, Kate Sponsor: Not available
Qualification Name: Thesis (D.Psych.) Qualification Level: Doctoral