Caiels James, Rand Stacey, Crowther Tanya, Collins Grace, Forder Julien
Quality and Outcomes of person-centred care policy Research Unit (QORU), PSSRU Kent, University of Kent, Cornwallis Building, Canterbury, CT2 7NF, UK.
NatCen Social Research, 35 Northampton Square, London, EC1V 0AX, UK.
BMC Health Serv Res. 2019 Mar 29;19(1):201. doi: 10.1186/s12913-019-4025-1.
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.
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.
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.
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.
基于结果的公共服务政策与管理有力地论证了结果数据的价值。然而，从那些因认知或沟通障碍而无法完成纸质调查问卷或访谈的人群中收集这些数据存在诸多内在挑战。在本文中，我们从可能被要求代表他们所照顾的人充当代理人的无偿护理者和有偿护理者的角度，探讨作为代理人的观点。我们考虑了在将旨在衡量社会护理结果的工具——成人社会护理结果工具（ASCOT）改编为代理人报告工具时需要解决的关键问题。
参与者参加了焦点小组（八个焦点小组中的35名有偿护理者）或一对一访谈（八名无偿护理者）。所有参与者均通过护理者组织和护理服务提供者招募。使用主题框架方法对焦点小组和访谈期间收集的文字记录、现场笔记和音频数据进行分析。
参与者一致认为，任何充当代理人的人都需要非常熟悉护理接受者及其需求和护理情况。为提高通过代理人完成问卷的表面效度和可接受性，并确保问卷设计中减少任何潜在偏差，提出了一些针对代理人受访者的规定。这些规定包括：为每个代理人视角提供两组回答选项（代理人自身以及他们认为护理接受者会如何回答的代理人观点）；一个评论框，以帮助人们解释他们选择给定回答选项的原因（特别是在这些选项表明需求未得到满足的情况下）；以及为代理人受访者提供关于如何完成问卷的明确指导。
本研究展示了通过代理人评估结果所涉及的一些挑战，并探索了一些减轻这些挑战的潜在方法。研究结果强调了以稳健方式开发和测试代理人测量方法以扩大社会护理研究参与度的益处。
