Down's Syndrome: The experiences of adolescents and emerging adults with Down's Syndrome and their siblings.

Abstract

The systematic review explores the lived experiences of Adolescents and Emerging Adults with a diagnosis of Down’s Syndrome (AEDS). Following completion of a systematic search, 20 papers were identified, and relevant qualitative data was extracted. A thematic synthesis was conducted, and four analytical themes emerged ‘Belonging’; ‘Self-Concept’; ‘Interdependence’; ‘Contemplating the future’. The themes are discussed in relation to existing literature and theory. In addition, the review highlights important implications pertaining to the lives of AEDS including promoting belonging within one’s local community as well as enhancing understanding and awareness of Down’s Syndrome (DS) in society.The empirical project qualitatively explores the experiences of individuals who have a sibling diagnosed with Down’s Syndrome from Racially or Ethnically Minoritised (REM) communities. Interviews were completed with eight participants. Through Interpretative Phenomenological Analysis (IPA), four Group Experiential Themes (GETs) were identified ‘Relationships and Connections’; ‘Understanding’; ‘Day-to-Day Life’; ‘Responsibilities’. In addition, narratives around ethnicity and culture were highlighted within the themes. The research emphasises clinical implications around supporting individuals who have a sibling diagnosed with DS (ISDS) including the need for sibling groups and therapeutic interventions, and that representation from a range of ethnic backgrounds is considered.

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Identifiers

ORCID for Gemma Watts: orcid.org/0009-0002-2143-6375

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