Since my Mum became a full-time carer to my Dad, our family has become more attuned to the plight of carers. Not least the degree to which their needs go unmet in our increasingly overstretched health and social system.
The ‘blind eye’ has extends to research to a degree. After all, we talk about research ‘of patient benefit.’ It really is one of those areas where the time-honoured phrase ‘more research needed’ holds true. Even the fact that we talk about ‘patient and public involvement’ with little mention of carers is telling is it not?
It is an issue we need to address with greater urgency and concentration. As a new NIHR report on a seminar hosted by the London School of Economics and Political Science (LSE) published today concludes: ‘Carers have a “pivotal” role to play in the effectiveness of future health and social care-related research,’
The event was funded by the Department of Health and the National Institute for Health Research School for Social Care Research (NIHR SSCR), and organised by members of the Independent Advisory Group on Carers (IAGC) and the NIHR SSCR. It brought together carers and expert representatives from a range of charities and public-sector organisations, was convened to explore ways of adding value and impact to research through the wider inclusion of family carers
Discussion among delegates highlighted a number of key ways in which carers’ perspectives could enrich research by “broadening the lens” and, in some circumstances, advocating for the people they care for. The seminar also highlighted key messages on their future involvement in research including:
Getting in early
An important message that came out of the session was the need to involve carers early – from the research design stages of projects – and then to sustain that involvement as part of longer-term partnerships.
“Their time and input needs to be adequately recognised, including financially, and they need to be treated as partners, as experts in their own lives and (often) the life of the person with the health condition,” the seminar report said. “This is not only respectful but is about genuine involvement, not a token last minute tick-box exercise or afterthought.”
Too often in the past, delegates pointed out, the opposite had been the case, with carers being invited to input late in research processes and, sometimes, in a tokenistic way. A common mistake has been for carers to be treated as proxies for the people they care for, rather than people with valid viewpoints of their own.
Participants went on to identify a series of other barriers to carers being meaningfully involved in studies, including:
● A lack of recognition of the diversity of carers, their situations and their perspectives. This also tied into a tendency to overlook certain groups of people; for example those who had ceased to be carers because of bereavement or because the person they were caring for had moved into a home.
● Challenges around accessing and including people who do not identify themselves as ‘carers’ but are nonetheless caring for somebody.
● A misperception of carer-related issues as not being ‘core’ to health and social care research.
● Logistical issues around involving carers; for example because undertaking research in care homes and domestic setting may be more demanding of resources then carrying it out in hospitals.
● Apprehension on the part of carers about the objectives of research and the collection of data.
● Practical issues, such as payment for research participation causing problems with benefits claimed by carers, or simply freeing up the time from caring responsibilities in order to participate.
Opportunities for improvement
Nonetheless, attendees found reasons for optimism. “The demographic changes society is going through, notably the ageing population and more young people living longer with complex needs and the challenges these are likely to bring, present an opportunity to highlight the importance of carers, their value to society and the need to include them in research,” the report said.
New technology can also help with access; for example through online participation or using video conferencing, delegates pointed out. Networks of carers already exist, whom researchers can build relationships with and develop their capacity and skills for research.
Speaking at the event, the LSE’s Professor Martin Knapp and Professor Sube Banerjee of the University of Sussex described two research projects involving carers of people with dementia.
One of these, the ‘START study’, had tested an intervention delivered by psychology graduates that significantly improved carers’ mental health, compared with existing support, for no increase in cost. The other, the ‘Time for Dementia’ programme, helped healthcare professionals to better understand the impact of dementia on people and their family carers.
Building on such promising projects would require a series of actions, the seminar report concluded. These include diverting the necessary resources into carer engagement, building an infrastructure via which to develop research partnerships, and providing training and support – including financial support – to sustain carer involvement.
Heléna Herklots CBE, Chief Executive of Carers UK and Chair of the NIHR SSCR Advisory Board said: “Carers face many challenges in their lives caring for someone who is disabled or ill and as such bring unique perspectives that can transform research – both from their perspective as a carer, but also how caring impacts on other aspects of their lives and those of their families and close friends. Research has the power to inform and shape policy and practice as well as lead to greater understanding of social issues in our society. It is vital that research on carers is research with carers and we look forward to seeing more of this in the future.”