Davies, Nathan;
Aker, Narin;
West, Emily;
Rait, Greta;
Sampson, Elizabeth L;
(2024)
Acceptability of Using a Decision Aid to Support Family Carers of People With Dementia Towards the End of Life: A Qualitative Study.
Health Expectations
, 27
(3)
, Article e14123. 10.1111/hex.14123.
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Abstract
Objectives: To explore the experiences, acceptability and utility of a decision aid for family carers of people with dementia towards the end of life. // Methods: We conducted semi-structured interviews with a sample of family carers enroled into a 6-month feasibility study in England, sampling to gain a range of experiences and views, based on relationship to person they cared for (e.g., spouse, adult child), age, gender, and self-reported use of the decision aid during the feasibility study. Interviews were conducted in March 2021–July 2021 and analysed using reflexive thematic analysis. We used COREQ checklist to report our methods and results. // Results: Family carers found the decision aid acceptable, describing it as comprehensive, accessible with relevant information and its presentation enabled good engagement. Experiences of the decision aid covered four main themes which demonstrated the perceived acceptability and utility: 1. A source of support and reassurance; 2. Empowering conversations and confidence; 3. Including the person living with dementia; and 4. Breaking down complexity. // Conclusions: An aid focussing on decisions about dementia end of life care supported family carers break down complex and emotive decisions, not only with making decisions in the moment but also in future planning. // Patient or Public Contribution: Our three Patient and Public Involvement (PPI) members (all former family carers) were crucial throughout the wider study. PPI supported development of the topic guides, supported trialling the topic guide and interview procedures and finally supported the development of themes as part of the analysis.
| Type: | Article |
|---|---|
| Title: | Acceptability of Using a Decision Aid to Support Family Carers of People With Dementia Towards the End of Life: A Qualitative Study |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1111/hex.14123 |
| Publisher version: | https://doi.org/10.1111/hex.14123 |
| Language: | English |
| Additional information: | Copyright © 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, https://creativecommons.org/licenses/by/4.0/, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. |
| Keywords: | Decision‐aid; decision making; dementia; palliative care; qualitative |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Primary Care and Population Health |
| URI: | https://discovery-pp.ucl.ac.uk/id/eprint/10193174 |
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