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. 2024 Sep 25:1-16.
doi: 10.3310/NPYT7562. Online ahead of print.

National stakeholder consultation on how to measure care home residents' quality of life

Gizdem Akdur  1 , Lisa Irvine  1 , Stacey Rand  2 , Ann-Marie Towers  3   4 , Lucy Webster  3 , Karen Spilsbury  5   6 , Liz Jones  7 , Claire Goodman  1   8
Affiliations

National stakeholder consultation on how to measure care home residents' quality of life

Gizdem Akdur et al. Health Soc Care Deliv Res. .

Abstract

Background: The Developing research resources And minimum data set for Care Homes' Adoption and use or DACHA study aims to create a prototype minimum data set combining residents' information recorded by care homes with their data held in health and social care data sets. The DACHA minimum data set will contain information on quality of life. Internationally and in the UK, there is no consensus on collecting information on quality of life in a standardised format equivalent to the consensus for health measures.

Objective: This paper describes an online consultation with stakeholder representatives about how to measure the quality of life of residents in UK older-adult care homes, for inclusion in the DACHA minimum data set.

Design: We drew on principles of the Delphi technique, identifying participants knowledgeable about living, working in and visiting care homes, and preference scoring.

Setting: We used a bespoke online research engagement platform (Thiscovery, www.thiscovery.org, Cambridge, UK) to engage the participants.

Participants: Participants included care home staff and managers, old age specialists (clinical/research), commissioners/providers/regulators, primary care professionals, relatives/family carers of care home residents. The consultation is complementary to DACHA's research and patient and public involvement and engagement activities, which have involved people living in care homes; thus, care home residents were not included in this consultation.

Results: The first round asked 30 participants to rank the most important principles and domains to consider when measuring quality of life in care homes. Responses to round 1 informed the selection of quality of life measures that round 2 (September 2022) participants were asked to report their familiarity with and confidence in a range of outcome measures all of which met the criteria identified as important in round 1. Recruitment was extended in round 2, and 72 individuals participated.

Conclusion: Based on the rankings and the qualitative feedback in round 2, we included four of the shortlisted quality of life outcome measures in DACHA's prototype minimum data set for care homes. The qualitative feedback suggested a shared understanding across the different representative groups about the strengths and limitations of the selected measures. This work makes an important contribution, understanding the opportunities that quality of life measures pose for different stakeholder groups as regular users of care home resident data.

Future work: In future DACHA work, interviews and focus groups will collect further data about the perceptions of care home staff who completed measures during the pilot study and about the usefulness of the data collected via these measures. The quality-of-life section of the DACHA minimum data set can contribute to informing similar care home data sets internationally.

Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR127234.

Keywords: CARE HOMES; CONSULTATION; MINIMUM DATA SET; QUALITY OF LIFE; STAKEHOLDER CONSULTATION.

Plain language summary

The Developing research resources And minimum data set for Care Homes’ Adoption and use study aims to explore how we can link together and safely share information about older care home residents so that care settings (such as hospitals, GPs and care homes) can best meet their needs. To work towards this aim, we are identifying what information is most important to capture and share in a ‘minimum data set’. Having information about care home residents’ quality of life was recognised by residents, their family members, care providers, researchers and health professionals as something that is important to measure. Quality of life describes the general well-being of an individual and is more than whether someone is healthy or not. By measuring a person’s quality of life, it is possible to explore how changes in their care or innovations within their care home affect their sense of well-being. We asked care home staff, experts on ageing, healthcare workers, local authority officials and family members of residents what is important to know about residents’ quality of life. In the first online survey (June 2022), we learned from 30 individuals that any quality of life measurement tool needs to be simple, reliable and meeting the needs of the residents. In our second survey (September 2022), 72 individuals gave us their thoughts about different quality of life measurement tools. They told us about whether they would use these tools, how much confidence they have in them, and what they see as strengths and weaknesses of the tools. This feedback helped us choose the right tools to measure quality of life in care homes and make sure they are a good fit for care home residents.

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