SALSA - Feasibility
Research type
Research Study
Full title
Supporting family carers of people with dementia: Developing a decision aid – Feasibility
IRAS ID
270964
Contact name
Nathan Davies
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2019/11/87, UCL Data Protection Number
Duration of Study in the UK
1 years, 1 months, 28 days
Research summary
Research Summary
Background: Despite efforts to increase planning for end of life with people with dementia, many reach the end of life without having made a care plan. This leaves many decisions about care for families. Family carers often do not know how to approach such conversations and significant decisions. Family carers may benefit from support in making decisions. Decision aids are one potential solution. Decision aids guide the decision maker through, clarifying their values they place on the benefits or harms of the options. We have developed a decision aid to support family carers making decisions on behalf of the person with dementia towards the end of life. The decision aid was developed based on information from a systematic review of dementia decision aids, theories on decisional support guidance and interviews with people with dementia and family carers.
Aim: This study aims to test the acceptability and feasibility of a decision aid for family carers of people with severe dementia or those towards the end of life.
Methods: A Feasibility study using a before-after design with 30 family carers of people with severe dementia or those towards the end of life. Family carers of people with dementia will be recruited via nursing homes, hospital trusts, third sector organisations and carer or dementia organisations. Family carers will use the decision aid for 6 months. We will collect outcome data on the health and wellbeing of family carers at the start, and again after 3 months and 6 months.
Outcomes: At the end of this study we will have information regarding optimal context for a future larger study, including information on recruitment and feasibility of collection of outcomes and outcome measures. We will have an understanding of the utility, usability, as well as barriers and facilitators to the use of the decision aid.Summary of Results
We completed the feasibility study to test the acceptability of the decision aid and feasibility of running a larger study to evaluate the decision aid. We recruited 28 out of our target of 30 participants. This demonstrates it is possible to recruit participants to this type of study for this decision aid. Twenty participants completed the study for the full six months which is good for a study about end-of-life care and shows people will remain in a study such as this. Our results suggest the decision aid was helpful to family carers and they enjoyed using it and being part of the study. Participants found the decision aid helpful and provided a positive evaluation in interviews. Our results indicated a reduction in decisional conflict suggesting it supported carers decision making, reduced carer distress, and improved carer satisfaction with care. We did not see an improvement in carer quality of life. This study did not intend to measure effectiveness and consisted of a small sample so we cannot infer effectiveness from this study, however these results are a positive indication for further research and our results indicate a further larger evaluation of the decision aid is possible and needed.
REC name
London - Queen Square Research Ethics Committee
REC reference
20/LO/0210
Date of REC Opinion
9 Mar 2020
REC opinion
Favourable Opinion