Involving and engaging carers in research

I am a mother, grandmother, family social carer. I am British Somalia which means I am a very diverse character. I am involved in Bryher’s project and also the Recollect and Recovery College.

The reason I got involved in Bryher’s project and other projects is because my brother is even more diverse than I am, and I have found major negative issues being Black, well-educated and well-spoken, both within the mental health field and in any field to be honest with you. I think people assume things about you – that you’re loud and aggressive – and don’t treat you in the same way as others.

So, I’m in research for my big brother who has lived with schizophrenia for almost fifty years. He lives in a care home, and I believe that the residents in mental health care homes are not getting what they should be getting, both from a diverse cultural aspect (e.g. food, social well- being) and in support for their mental health wellbeing.

I am involved in these projects as a carer because I believe that the research is going somewhere, and I believe that my time should be spent – on my brother’s behalf – to help diversity, inclusivity and mental health and wellbeing for all to move forward. I think that Bryher’s project is what this is all about; if it wasn’t I wouldn’t be involved.

One of the negative aspects I found with the projects I am involved in is the use of jargon. I am very well educated, I’ve travelled the world and studied everything but sometimes the research jargon does get me a little bit bogged under.

I am mental health carer and look after somebody with borderline personality disorder since 1990. I also set up and ran a mental health carers charity in Dorset which started in 2004 until 2013 and we represented about 150 mental health carers – I’m drawing on their experiences as well as my own.

I also work at Bournemouth University as one of the BU PIER Officers in public involvement in education research; the programmes I work in are social work, occupational therapy, paramedic science, physiotherapy and operating department practice so I get to hear students talking about their placements which is very rewarding.

Research involvement

I got involved at Bournemouth University in a research project in 2017/18 which was interviewing 11 older male carers so all of them 80 years old and above with half from Bournemouth and half from Poole. We split the interviewing between the team and I interviewed three carers in their homes; those interviews came out with a wealth of information on what was working and what wasn’t. From the project we produced a journal paper published in the Journal of Community Nursing in 2017/18, and a video (Bournemouth University, Chief Cook and Bottle Washer) which won an award in Dorset. Most people who watch the video are really touched by the evidence the carers give.

Another thing that came out of the project was that we set up a male carers support group in a local GP surgery which we hadn’t planned, and we received funding for a leaflet that went to all of the GP surgeries in Dorset talking about the issues for older male carers to help provide support.

That sort of lit the fire for me as the research had been really useful especially as we did this in the 3–4 month period. It was a small project which had quite a big impact.

I then decided to link up with the NIHR Policy Research Unit in Adult Social Care (ASCRU) in 2019 as a member of their public involvement and engagement group. I got involved in a project through ASCRU on strengths-based approaches to social work and care. In the project I contributed to a final version of a report which is currently in draft form and a literature review which was published as a journal paper. I felt really valuable as part of the ASCRU project and was listened to.

My key messages to carers

It’s OK to say ‘no’ as a carer asked to join a research project. I know that sounds strange, but I would advise not over committing and not to agree to join a project unless you’re happy with it and you understand what’s required of you because I see that happening a lot. Make sure you are clear what’s required from you.

Don’t be afraid to ask about payment. It’s not a dirty word – some people don’t want to be paid but others do – and it’s important to know.

My key messages to researchers

Don’t send last-minute requests – it’s not good.

Make sure you have good communication and keep the carers informed through the research process.

Payment details are really important, and timescales for processing.

Don’t use the same person all the time across different projects. New people need support to develop and opportunities to get involved too.

It’s always important to find out how long someone’s been a carer because if you’ve got somebody who has been looking after someone with a condition for a while, they’re extremely well-versed in it. They probably know the situation better than the researcher they’re talking to. There are some of the carers that are really experienced and engaged, and some who have never done it before. That’s why the initial conversation with the researcher is really important, to find out what the opportunities are and how the carer feels.

Useful links

VOICE is a unique organisation which supports involvement: https://www.voice-global.org.

In Bournemouth University we have just started a PPI course for researchers which is being run twice a year: https://www.applycpd.com/BU/courses/112131.

I am a public advisor in research and have been a carer three times: first for my gran, second for my mother who had cancer and, thirdly, for my uncle. I do think caring for them has been a privilege, as well as trying to help them. I do think I have learned an awful lot about me, I’ve developed new skills. At times it’s been hard, particularly when I got diagnosed with an illness myself, I did find caring quite difficult, but I was determined to carry on with the role.

I think ‘PPI’ is very different from a carer’s perspective, and quite often I find myself just sort of thinking; will my uncle be comfortable with me sharing this with researchers and other PPI members?

Before he got dementia I could actually ask him: I could say, what do you think about this? How was your care this week? Then I could relay it back word-for-word. However, when his dementia developed that was quite difficult. I had to make my own judgements about what I was going to share about his care, both in his domestic home when it was me and a professional carer looking after him, and also in a care home in the last two years.

So it was also about sensitive topics, what do I reveal about this? Talking about his personal relationships would have been off limits for me as that was part of his private life. However, there were other things socially that he did, like his voluntary military contribution and the work that he did with the family history group – those kind of things I would share, and also things to do with nutrition, mobility and the different aspects of his condition. It would be helpful to have guidance about this, and having opportunities to have one- to-one conversations with a research colleague or a public involvement member about situations as they come up would be very helpful.

Research involvement

My journey into social care, it came from health and public health when I finally realized there was something missing, and I should do social care, and I must say I feel I have been very welcomed into the social care field. I joined the NIHR School for Social Care Research’s public involvement group in 2019 and have been involved in two projects so far.

The first is on NICE guidance. It’s never been done before, but London School of Economics and Political Science is doing a project on looking at the implementation of NICE’s social care guidance. I am co-chair of the national involvement group. Another project was on resilience and recovery post-covid. That project was really exciting as it was international. I remember doing a workshop where we had a big virtual mural, and we imported and populated the mural with information. This was my first project and the negative side of that was I jumped straight into social care on a very high-profile project, and in hindsight perhaps I shouldn’t have done that. I was so well supported by the team, and another member even helped me over the weekend while I was doing the preparation.

My key messages

I would suggest that training is made available, and that carers joining research projects ask for it – I’m sure the organisations involved will try and help with any training requested.

There are things we’ve developed in health which might be useful, particularly bursaries, going on training courses (more intense training), and also training on how to evaluate involvement. Also awards, as that’s something we do in health, so occasionally public involvement members are lucky enough to get an award. So that may be something else that the social care research field could learn from the health field.

I have been my sister’s carer since 2014. She has dementia. I say I’m her carer but I’m more a kind of care administrator and manager – I don’t live with her nor administer personal care; I have power of attorney and have oversight of her care and I guess I provide social and emotional care. For the last 25 years I’ve been involved with what we laughingly call the age sector or the age space, or space age people! Both on a local government level and national level, I’ve been seeking to improve quality of life for older people. So for a number of years, I’ve been a member of the Service User and Carer Advisory Group for the NIHR Health and Social Care Workforce Research Unit at King’s College London and have taken part in a number of research activities since then.

My experience of being involved with research has been extremely positive. The groups I have worked with anticipated and prepared for issues that might arise during the course of the research that could be extremely sensitive or actually quite traumatic for the carers involved in the research, and have prepared for that and provided reassurance.

My key messages

Researchers need to be very clear about the purpose of involving carers in their project. From the point of the view of the carer this will help them to set boundaries.

People don’t necessarily identify or view themselves as a carer. I might ask myself ‘am I a carer or a partner?’. The number of times I’ve heard somebody say “I’m not a carer, I’ve been her husband for 40 years”, and I think that’s quite an issue to try and sort through, because there’s quite a lot of resistance there. The caring role – is it a job or duty? I think that’s often conflicted in many people’s minds about how to then get involved or see the perspective there. I think there’s a real difficulty in stepping back and contributing the carer’s perspective, rather than the tendency to see involvement as more about improving the cared for person’s circumstances. It’s important to skim away the layers within this.

It’s important to seek to involve people who used to be called ‘hard-to-reach’, and members of diverse communities, particularly culturally marginalized members of communities. It might be useful to talk to trusted points of contact and intermediaries such as community leaders cultural leaders faith groups etc about the nature of ‘caring’ before trying to recruit through the usual referral connections in terms of carers groups and professionals.

Perhaps we should look at the methodology of research to improve involvement which has been touched on by others: approaches such as storytelling for carers experiences, recording over time, using carers’ diaries, buddying, new uses of technology.

And what about incentives? What do I, the carer, get out of taking part? How does it improve things either for my situation or the cared for person? Perhaps not so much about payment BUT other ways to acknowledge the participation and contributions to improving care – vouchers? Reduced council tax? Time banks, reciprocal contract for support?

Something I feel quite strongly about is involving carers at the very beginning. When we’re talking about co-production and co-researching, I think what we should be engaging with carers to design the research questions and, so not just co- designing the research but getting to the nuggets of what the carers are interested in.

The thing I really have to emphasize, though, is it still seems to me that there is still a very much a non-joined up approach to care; professionals are one, unpaid family carers are another. There is no sense of intertwining, and carers are still acknowledged as the Cinderellas, sort of busying around in the shadows. We simply compartmentalize that and reinforce that by focusing upon carers. Why don’t we take far more of a whole system appreciative inquiry approach to understanding the interplay of parts of the care system; an illness, condition impacts way beyond the person themselves but we still seem to have a traditional focus to “treat the liver in bed 9” – and sort of accommodate the family carer as an add on to the cared-for person’s health needs.

So, let’s have more co-production and more co- researching, and invite people in the community to share their vision on the kind of care and support we would want for our loved ones and for ourselves. More vision, please.