Title: Developing a Quality of Life Tool Around Resident and Family Priorities Which Can Be Used Routinely to Support Quality of Care in Care Homes
Funder: Dunhill Medical Trust

Abstract: Background Measuring how care influences Quality of Life (QoL) for care home residents is difficult. Available QoL measures have been designed for research use and don’t recognise that priorities change when people move into care homes. Measures that take account of residents’ priorities and designed for use in routine practice are needed. Aim To develop a person-centred QoL tool which can be used routinely by care home residents, their families and staff to understand and improve care. Objectives 1.Understand residents’ perspectives on what constitutes QoL. 2.Examine staff/family carer perspectives on QoL for care home residents. 3.Work with residents and family/staff carers to develop a person-centred QoL tool for routine use in care homes. 4.Test the acceptability and feasibility of the tool. Methods Phase one (developing a programme theory of QoL in care homes): A realist approach will be adopted. Focus groups will explore resident and family/staff carers’ views regarding QoL in care homes. Transcripts will be used as a starting point for a realist review using published literature on QoL in care homes to develop a programme theory of contexts, mechanisms and outcomes that affect QoL. Phase two (proposing candidate measures): A PPI and expert consultation group convened to support the PhD programme will be shown the phase 1 programme theory, alongside examples of existing QoL indices, and asked to propose candidate measures for a QoL tool to support routine care. Phase three (developing the tool): The long-list of candidate measures will be prioritised and reduced in number using an online Delphi approach. An expert panel convened through supervisors’ networks will complete three rounds of consensus building to select a shortlist of measures for evaluation in routine care. Phase four (finalising the new tool): The tool will be piloted using think-aloud interviews with 30 care home residents, 30 family carers and 30 care home staff. This will assess: acceptability of the tool; feasibility in routine practice; and reliability of family/staff carer proxies. Descriptive statistics and factor analysis will be used to consider distribution of values, ceiling/floor effects and further item reduction. Impact and Dissemination Dissemination will be via presentation to care home forums, academic papers and conference presentations. The finalised tool will, after PhD completion, be embedded in the UK arm of the annual LPZ quality benchmarking audit, where the LPZ International Research Group will supervise further, more comprehensive validation in their audit cohort of over 1000 residents.

Lay abstract: When care home residents, their relatives and staff are interviewed, they say that maximising quality of life is important. Many practical changes made in care homes are designed to improve quality of life. We are, though, unable to measure changes in quality of life in routine care home practice because the measures that are available have either not been designed for care home use, or are long, cumbersome and designed for research. This project aims to develop a quality of life tool that can be used routinely by care home residents, family and staff carers to describe and quantify residents' quality of life, so that the impact of changes to care can be understood. The project will start with focus groups including residents, their family carers and staff, to explore what matters to residents when describing quality of life. It will then conduct a detailed review of the published literature to establish what is known about how quality of life is realised in care homes. The results of the literature review will be presented to panels of residents, family carers and care home staff with the objective of building a long-list of possible quality of life measures that could be included in a tool for routine use. Following this, a panel of experts, which will include carer experts by experience, will be recruited for an online consensus process. Email questionnaires will ask experts to rank the long-list quality of life measures in order of importance, and to establish what number and type of measures will be feasible as part a tool for routine use. Over three rounds of consensus this process will be used to reduce the number of measures to a manageable amount. The short-list of measures will then be formatted into a tool for use in routine practice. 30 care home staff, 30 residents and 30 family carers will be watched using the measure in routine care settings whilst being asked to speak their thoughts aloud. This will provide information on the feasibility and appropriateness of measures within the tool. Statistical analysis of the 90 completed questionnaires will be used to further reduce the number of items in the tool where possible. This last stage, finalising the tool, will end the PhD project. The tool will then be included in the UK arm of an international benchmarking audit for care homes, for validation in over 1000 residents.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.1 INDIVIDUAL CARE NEEDS
Health categories: GENERIC HEALTH RELEVANCE