3. SHARED endeavour
A study making recommendations for hospital discharge involves people affected by dementia as researchers, not just participants.
But in some studies, people with personal experience can also be involved as members of the research team. People involved in this way are often called 'co-researchers', as they collect and analyse data in addition to providing guidance.
The researchers overcame a number of barriers to involve co-researchers in this way. Dr Carole Mockford, who led the study at the University of Warwick, said, 'We had some challenges getting the co-researchers involved, including arrangements for paying them and permission from NHS trusts to let them interview staff on hospital premises.'
Alzheimer's Society, a partner on the project, helped to remove some of these barriers by setting up a study group. We assisted co-researchers with paperwork for security checks and provided insurance cover for them.
Twelve co-researchers were involved in the study, half from the Research Network and half from other local volunteer networks. Sue Boex, a Research Network volunteer, was one of them. This was a new experience for Sue, who said, 'I was very nervous obviously, it was quite a learning curve but we had plenty of training.'
All the volunteers received three days of training in topics such as research ethics, interviewing and data analysis.
Sue carried out interviews with patients and carers about their experience of being discharged from hospital, and could see how her experience was valuable to the study. 'Because we'd been through what they were going through, that helped.' said Sue. 'They wanted someone to listen to them. It was a really worthwhile experience.'
Dr Mockford appreciated the fact that co-researchers could provide a different perspective. She said, 'Their friendly but professional approach put the study participants at ease. Discussions between the co-researchers and study participants at the focus groups were very lively and ultimately successful.'
Along with a number of researchers and co-researchers, Sue is a co-author of two published academic papers written about the SHARED study. One, published in the journal Research Involvement and Engagement, describes the process of starting the study and involving co-researchers. The other, published in Health Expectations, shares the findings from the interviews.
This paper puts forward three recommendations to support a smooth transition from acute hospital care to the community for people who have memory loss.
- The first is to have a written, mutually agreed and meaningful discharge plan.
- The second is to have a named co-ordinator who is a point of contact for services and support.
- The third is to improve the quality of care provided by agencies in people's homes.
The challenge now is to build on these user-led recommendations to make meaningful change. It's clear that involving people affected by dementia will be just as important when taking these next steps.