Abstract
BackgroundOutcomes-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.MethodsParticipants 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.ResultsParticipants 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.ConclusionsThis 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.
Highlights
Outcomes-based policy and administration of public services present a compelling argument for the value of outcomes data
It is included as an overarching outcome measure in the Adult Social Care Outcomes Framework (ASCOF) for England, which seeks to provide an overview of national and local performance that promotes transparency, accountability and service improvement driven by the needs of people who use services [11]
Others may act as proxy respondents – for example, advocates, volunteers or health care professionals – we explored 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
Summary
Outcomes-based policy and administration of public services present a compelling argument for the value of outcomes data. Identifying common factors in ‘good’ provision of public services can potentially be shared and applied to other provider settings This outcomes-based approach has influenced different public services, including publicly-funded social care. The ASCOT is a measure designed for self-completion by social care service users, regardless of the reason(s) why they need social care support. It is included as an overarching outcome measure in the Adult Social Care Outcomes Framework (ASCOF) for England, which seeks to provide an overview of national and local performance that promotes transparency, accountability and service improvement driven by the needs of people who use services [11].
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