How can we best engage with frail older people? Reflections from a public engagement project
This is a guest post by Rachael Frost and Pushpa Nair from the UCL Centre for Ageing Population Studies sharing learning from their project Engaging with mental health in very late life. This project was funded by a UCL Beacon Bursary.
Getting frail older people involved in research can be challenging. Mobility issues, sensory impairments, and potentially some cognitive impairments, can make it difficult to engage in PPI (Patient and Public Involvement) work, such as attending meetings or providing feedback on grant applications and results summaries. However, there are many important ways we can connect with older people who are frailer, to ensure people have a voice in research that is trying to improve their lives.
Below, we outline some tips that we learnt from our recent public engagement project: Engaging with mental health in very late life (see here for the case study).
1) Go to them.
Finding interested people and suitable places is always difficult, but can be overcome by partnering with day centres. Their rooms are already tailored to people with mobility difficulties, and there’s plenty of tea and coffee for service users! In addition to providing a space for discussion groups, they offered invaluable support in identifying who might be interested in taking part and physically assisting people over to the discussion room, as well as assisting with the more creative aspects of the project. Centres had a wide range of service users that we would otherwise have found difficult to access and involve in the research process – people who were illiterate, people who could speak but not read or write English and people from a range of minority ethnic groups – who were happy to talk to us in an informal way in the setting of the day centre.
2) Have a clear, simple focus.
Initially, we planned a complex discussion session involving three topics: what people knew about mental health and local services, establishing future research priorities and how we could improve dissemination of research findings. About halfway through the first session, we realised we were trying to fit way too many things in! Each person took a while to express their thoughts, but everyone needed to be given an opportunity to speak. Balancing this with ensuring discussions weren’t too long or repetitive was a challenge. Focusing on a single, clear theme worked much better.
Once we restructured the discussion upon simply what could support people’s wellbeing at this point in their life, they became a lot more focussed and we could discuss the issues in more depth. Importantly, we still learnt about people’s knowledge of mental health and local services and how people preferred us to communicate, even without directly asking about these.
3) Make it personal.
Information, ideas and activities worked better and gained more interest when they were personally relevant (e.g. talking about themselves or a friend) rather than general or abstract (“What should we research?”). However, we discovered it was wise to avoid asking people in their 80s with lots of life experience and stories to ‘tell me a bit about yourself’!
4) Keep it small.
The ideal discussion group size was three to five people. When we had more than this, some people left because they weren’t able to have their say, whilst others tried to start a second group conversation. Small groups didn’t work well for those with hearing or cognitive impairments –one-to-one chats may be more helpful for these groups of people.
5) Make it creative.
Though written information is the backbone of research, our colourful handouts with basic facts and figures about depression in later life just didn’t interest frail older people. Some of our participants hadn’t learned to read or write as they were evacuated during the war, or hadn’t had the chance to learn to read or write in English since moving to the UK. Verbal discussions offered a great opportunity to explore things in depth, but weren’t very novel for older people. Asking people to decorate postcards with drawings and stickers about how they felt and what wellbeing meant to them was partially successful, although didn’t provide much opportunity for people to elaborate on the topic.
The better idea was a photo project, Smile, in which we gave five to six service users in each centre a disposable camera and asked to them to photograph things that were important to them and improved their wellbeing. Although this also required a lot of support from the day centres, people enjoyed the process and seeing the photos when they were back from development. It gave a lot more insight into people’s lives and the support they had around them.
6) Public engagement with older people is a worthwhile and fun process!
Please get in touch if you have thoughts, hints or tips – we’d love to hear from you!