Exploring the views of being a proxy from the perspective of unpaid carers and paid carers: developing a proxy version of the Adult Social Care Outcomes Toolkit (ASCOT)

Caiels, James, Rand, Stacey, Crowther, Tanya, Collins, Grace, Forder, Julien E. (2019) Exploring the views of being a proxy from the perspective of unpaid carers and paid carers: developing a proxy version of the Adult Social Care Outcomes Toolkit (ASCOT). BMC Health Services Research, 19 (1). ISSN 1472-6963. (doi:10.1186/s12913-019-4025-1)

Abstract

Background: Outcomes-based policy and administration of public services present a compelling argument for the value of outcomes data. However, there are a number of challenges inherent in collecting these data from people who are unable to complete a paper-based survey or interview due to cognitive or communication impairments. In this paper, we explore the views of being a proxy from the perspective of unpaid carers and paid carers who may be asked to act as a proxy on behalf of the person(s) they care for. We consider the key issues that need to be addressed when adapting an instrument designed to measure social care outcomes, the Adult Social Care Outcomes Tool (ASCOT), into a proxy-report tool. Methods: Participants took part in either a focus group (35 paid carers in eight focus groups), or a one-to-one interview (eight unpaid carers). All participants were recruited via carer organisations and care providers. Transcripts, field notes and audio data collected during focus groups and interviews were analysed using a thematic framework approach. Results: Participants agreed that any person acting as a proxy would need to be very familiar with the care recipient, as well as their needs and care provision. A number of provisions for proxy respondents were proposed to improve face validity and acceptability of completing a questionnaire by proxy, and to ensure that any potential bias is reduced in the design of the questionnaire. These included: providing two sets of response options for each proxy perspective (the proxy themselves and the proxy view of how they think the care recipient would respond); a comments box to help people explain why they have selected a given response option (especially where these indicate unmet need); and providing clear guidance for the proxy respondent on how they should complete the questionnaire. Conclusions: This study has shown some of the challenges involved in assessing outcomes by proxy and explored some potential ways these can be mitigated. The findings highlight the benefits of developing and testing proxy measures in a robust way to widen participation in social care research.

Item Type: Article
DOI/Identification number: 10.1186/s12913-019-4025-1
Uncontrolled keywords: Quality of life, Social care, Outcomes, ASCOT, Proxy
Subjects: H Social Sciences > HV Social pathology. Social and public welfare > HV59 Institutional care/home care
Divisions: Faculties > Social Sciences > School of Social Policy Sociology and Social Research > Personal Social Services Research Unit
Depositing User: James Caiels
Date Deposited: 02 Apr 2019 14:55 UTC
Last Modified: 03 Jun 2019 09:39 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/73332 (The current URI for this page, for reference purposes)
Caiels, James: https://orcid.org/0000-0001-5299-4682
Rand, Stacey: https://orcid.org/0000-0001-9071-2842
Forder, Julien E.: https://orcid.org/0000-0001-7793-4328
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