The lived experience of people with intellectual disability in community settings: A comparison of self-reports and staff reports

Smith, Elizabeth ORCID: https://orcid.org/0000-0002-3509-695X, Sumner, Petroc ORCID: https://orcid.org/0000-0002-0536-0510 and Powell, Georgina ORCID: https://orcid.org/0000-0001-6793-0446 2024. The lived experience of people with intellectual disability in community settings: A comparison of self-reports and staff reports. British Journal of Learning Disabilities 10.1111/bld.12629

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Abstract

Background: There is a need for more qualitative research focusing on the lived experiences of people with an intellectual disability and a better understanding of how these experiences align with other voices in their lives, such as family and support staff. Methods: In this qualitative study, we asked people with an intellectual disability (N = 87) and their support workers (N = 120) similar questions about factors contributing positively and negatively to the lives of those with an intellectual disability. We conducted a thematic analysis combining data across respondents, while also identifying areas of similarities and divergence between self-reports and staff reports. The setting was community-supported living schemes and group homes in the UK. Findings: Qualitative themes, representing key positive and negative factors in the lives of people with an intellectual disability, were (1) Positive impact of social relationships on well-being, (2) positive impact of participation and roles on self-determination and well-being and (3) negative impacts of difficulties affecting day-to-day life. These three themes are all linked to a broader sense of identity, purpose and self-determination. These were broadly consistent across self-reports and staff reports, although there were some points of divergence, particularly in Theme 3. Conclusions: These findings reveal areas that are key to maximising the quality of life of people with an intellectual disability and suggest that self-reports and proxy reports can sometimes offer unique perspectives. Our findings can be used to ensure that the priorities of people with an intellectual disability are considered in their care.

Item Type:	Article
Status:	In Press
Schools:	Psychology
Publisher:	Wiley
ISSN:	1354-4187
Date of First Compliant Deposit:	14 November 2024
Date of Acceptance:	29 October 2024
Last Modified:	14 Nov 2024 12:00
URI:	https://orca.cardiff.ac.uk/id/eprint/173512

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