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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.

Lambert, Katherine (2019) 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. Doctoral thesis, University of Surrey.

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Abstract

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.

Item Type: Thesis (Doctoral)
Divisions : Theses
Authors : Lambert, Katherine
Date : 30 September 2019
Funders : Not applicable
DOI : 10.15126/thesis.00852395
Contributors :
ContributionNameEmailORCID
http://www.loc.gov/loc.terms/relators/THSGleeson, Katekate.gleeson@surrey.ac.uk
Depositing User : Katie Lambert
Date Deposited : 02 Oct 2019 14:41
Last Modified : 02 Oct 2019 14:43
URI: http://epubs.surrey.ac.uk/id/eprint/852395

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