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)

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. Electronic supplementary material The online version of this article (10.1186/s12913-019-4025-1) contains supplementary material, which is available to authorized users.

The use of proxies and proxy-reported measures: a report of the international society for quality of life research (ISOQOL) proxy task force

“…This review identified relatively few measures developed specifically for proxy use, and several papers evaluating PROs adapted for proxy use. Adapted measures may be preferable in some cases given the goal of a proxy report substituting for an otherwise unavailable patient report; however, such adaptation will likely need to go beyond simple rewording and at a minimum clear instructions will likely be required [37]. Recently, the ISOQOL TCA-SIG developed good practices and process recommendations for translation and cultural adaptation of non-PRO clinical outcome assessments [34].…”

Care home residents’ quality of life and its association with CQC ratings and workforce issues: the MiCareHQ mixed-methods study

“…These are 'proxy-patient' interviews, meaning that the proxy informant (staff or family) is being asked to internally reconstruct what the resident might think or feel about each domain. 303 It is therefore important that this interview is undertaken with a member of staff who knows the resident well. 303 Sometimes, the proxy will recognise that their view and the view of the resident differs.…”

“…303 It is therefore important that this interview is undertaken with a member of staff who knows the resident well. 303 Sometimes, the proxy will recognise that their view and the view of the resident differs. This is a wellestablished phenomenon in the literature and is why proxy interviews should be considered a different perspective from self-report 303 and is why we do not rely exclusively on this to inform our ratings.…”

“…303 Sometimes, the proxy will recognise that their view and the view of the resident differs. This is a wellestablished phenomenon in the literature and is why proxy interviews should be considered a different perspective from self-report 303 and is why we do not rely exclusively on this to inform our ratings. Where such situations arise, interviewers ask the proxy to rate how they think the resident feels but will then make qualitative notes about why the proxy has a different opinion, as this too can provide very valuable information and context.…”

Caregivers’ Perspectives on Privacy in Aged Care Monitoring Devices

“…It's not okay if a person can't give a consent". IP1 therefore emphasised that proxies -who are responsible for answering questions on older adults' behalf, particularly regarding health and care services [3] -should be consulted before using ACMDs, "I would object strongly to any device being used without discussions with me and without my approval, because I speak for her [wife in residential care]". Both participants indicated that privacy decisions should be respectful.…”