Abstract
Introduction:
Care home residents and staff have limited, though increasing, opportunities to participate in research. This project aimed to describe motivating and limiting factors for research participation and priorities in Scottish care homes.
Methods:
In a cross-sectional study, a 21-item questionnaire was distributed to Scottish care homes for older people by ENRICH (Enabling Research in Care Homes) Scotland. It included questions on demographics and previous research involvement, with multiple choice and free-text response options. Mixed methods analysis was used including non-parametric descriptive statistics and thematic analysis. Ethical approval from University of Edinburgh SREG (ref: 2425 SREG 008).
Results:
There were responses from 121 care homes, (28% “small” <30 beds, 42.9% “medium” 30-60 beds, 28.9% “large/very large” > 60 beds) with ~70% residents with dementia or other neuroprogressive conditions. 40.5% (of 131 responses, multiple responses allowed) had previously been involved in research (19.1% ageing-related, 19.1% dementia-related), 29.8% had chosen not to be involved, 16% reported not being offered opportunities to be involved.
Key themes about research participation were that it allows staff/resident perspectives to be heard, and can improve care practices.
Respondents reported that research participation was decided by family (24.6%), resident (21.9%), manager (20.3%) or others.
Important research motivators were altruism: benefits for residents (94 of 631 responses, 14.9%), to help others (13.8%), future generations (12.2%), to find a cure (11.1%) or new treatment (10.1%). Important barriers included workload pressures (82 of 243 responses, 33.7%), time constraints (32.1%), potential for harm (16%) or confidentiality concerns (10.7%).
Future research priorities were dementia/neuro-progressive diseases (31 of 124 responses, 25%), staff-related issues (14.5%), activities/ quality of life improvements (10.5%), residents’ mental well-being (8.1%) and medications/interventions (6.5%).
Conclusion:
Many care home staff are keen to be involved in research, but require appropriate support, and the involvement and consideration of multiple stakeholders: staff, researchers, families, residents.
Comments
Non-participation interesting!
Great that a high number of care home managers completed the survey to share why they choose not to take part in research.
Research participation decided by family and residents was an interesting finding. Don't researchers negotiate access to the care home via the manager first?
Non-participation
Thanks Rachael,
Yes interesting - mostly we do speak to care home managers to arrange access to the care homes, but our PPIE work (RICH Voices) which has gone into homes and spoken to residents and families directly has found that some people don't hear about opportunities, so managers could have a 'gate-keeping' role, and some residents/families would like to hear about opportunities directly
Non-participation interesting!
How great that they found that. Something to think about when planning future research.
Interesting inights!
Important research conducted here as there is much more that we can learn about regarding care from the care home setting.
I'm interested to know whether any of the care homes had their own research staff/team? I've personally found that access to research in care homes are a little smoother when there is a research team, as I guess that they mitigate the largest factor of non-participation (workload and time pressures). For this reason, I do agree that more work through surveys or working with stakeholders would help provide more research opportunities in this setting.
Care home research teams
Thanks for your interest - I've not come across any research teams embedded in care homes in Scotland, hence the reason that ENRICH Scotland are building relationships with each care home via the clinical/care home studies officers in each location. I agree that relationships are key to success and these take time to build. Do contact the researchers at the conference to discuss more (unfortuately I'm not able to attend in person)
Comments
Thanks for presenting. Interesting insights and recommendations on future research priorities.