By Michael Clark and Anji Mehta

With four months to go in its first five-year cycle, the National Institute for Health Research (NIHR) School for Social Care Research (SSCR) has made significant strides in user, carer and practitioner involvement in the adult social care field, not just limited to its own work but in the sector more widely. Its 56 studies all involve users and carers in some form; the School’s User, Carer, Practitioner Reference Group are very active in setting and implementing the School’s strategies; and user involvement continues to be promoted at all levels.

SSCR was set up by the NIHR in May 2009 with the aim of improving the evidence base for adult social care practice in England. As part of this mission, we emphasised user involvement at all levels of the School’s activities in our business plan. Yet we knew that this would not be easily implemented. Different areas of social care research have different histories and developments with regard to wider involvement: mental health, physical disabilities and learning disabilities, for example, are all areas that have significant examples of wider involvement in social care research, which is not necessarily the case with, say, research into the care of older people. And it is not always clear what counts as involvement (versus participation), how to do it effectively, nor how to identify care users at a time when funding changes mean people are funding their own care and, thus, are not easily identifiable.

So what has the School achieved?

Involvement at the organisational level

We set up our User, Carer, Practitioner Reference Group (UCPRG) early in 2009 and it has continued to go from strength to strength. We have included practitioners in the Group as, compared to health care, there is a less-well developed culture and fewer resources to support practitioner-research roles and engagement. The Group engages enthusiastically in all School activities, from advising us on our direction, identifying research priorities, supporting us in setting and implementing research and knowledge exchange strategies, to reviewing proposals and end of project reports. Members from the Group also contribute their expertise as members of our Advisory Board and our Commissioning Selection Panel, as advisors for specific research projects (both funded by us and by others) and through involvement in our communication activities. One member is now also on the national Social Care Research Ethics Committee, while another is a co-investigator on a recent Economic and Social Research Council (ESRC)/NIHR-funded study on dementia.

The Group is also contributing to the development in social care research of a critical mass of users, carers and practitioners who can be better networked to support each other and be active in research.

Involvement in research studies

Involvement has always been a requirement for our studies, with all research proposals having to set out an appropriate plan for the involvement of users, carers and practitioners, and all plans reviewed by a member of UCPRG. All of our studies involve such members, either through local advisory groups or as members of project teams. Although we are currently drawing together a complete picture across all projects, in 17 projects involvement extends to:

• 20 people with direct experience of using social care services who are involved on advisory groups and/or as researchers
• 16 people who are carers of people who use social care services
• an extensive network of national bodies representing people who use social care services, or carers, such as Age UK, Mental Health Foundation, British Heart Foundation, MIND, Mencap, the Stroke Association, the National Council on Independent Living and Disability Rights UK
• many local organisations representing, and directly working with, social care client groups, such as black and minority ethnic (BME) communities, homeless people, older people, and people experiencing domestic violence
• many representatives of commissioning and providing organisations, including councils, care home providers, and third sector organisations.

The following example highlights one study (among many) and its approach to user involvement. An article about another SSCR-funded study ‘Optimising adult mental health service configurations across health and social care’ appears on page 5 of this newsletter.

Case study: Service users as advisors in a research project on the needs of homeless womenThis study, led by Dr Emma Williamson at the University of Bristol, aimed to identify homeless women’s experiences of the wider support system over time. The study followed homeless women over a period of two years to explore their experiences and needs. Recognising the potential difficulties in recruiting homeless women into the study (such as retaining contact over a sustained period, avoiding adding additional burdens on the women, and the need to balance the researchers’ needs and the potential emotional vulnerability of the women), the study recruited four previously homeless women who were now in stable accommodation to act as advisors to the study. Three of these women had been involved in an earlier study by the project team, and had been willing to engage further.The advisors were given confidence-building sessions and background training in research methods and ethics. They were actively involved in the design and methodology of the research, and were able to provide insights for recruitment purposes.

The project team has drawn together key learning from the involvement of these women as advisors in the project. They stressed the importance of building trust between the advisors and the researchers involved in the study and treating them as full members of the team, for example being transparent in decision-making discussions and fully enabling them to be part of project meetings without appearing to alienate anyone, and noting the need for clarity in all aspects of the study. The study concluded that the involvement of service users in the design and methods of the research project greatly improved the research tools and procedures.

For further information see www.bristol.ac.uk/sps/research/projects/current/RK7228/index.html

Developing methods of involvement and participation

The School has commissioned a number of methods reviews, several now completed, some of which focus on promoting an inclusive view of social care research (see page 4 of this newsletter).

User involvement takes effort, time and resourcing on the part of all parties involved to ensure it is done appropriately for each project, and without being tokenistic. We commissioned a review on user controlled research from Peter Beresford to explore some of the issues around user involvement in research. Within the School we are keen to support users and carers to develop their skills to play more of a leading role in social care research. We have also actively tried to promote the submission of user-led/controlled project proposals.

Next steps

We hope to move forward with user involved and controlled research in our next five-year cycle from May 2014. We are particularly keen to explore and apply innovative ways to bring the full range of people who use adult social care services into discussions about research. There is still relatively little involvement of some groups, such as people with dementia or adults with severe intellectual disabilities, for example. We would like to see more research that is led by service users and carers. We hope to work with INVOLVE and others to invest in structures to support this, and welcome further suggestions from users and carers. We also welcome suggestions for research priorities or topics. Please contact us via email or telephone as below.

Contact: Michael Clark and Anji Mehta

Email: M.C.Clark@lse.ac.uk or A.Mehta3@lse.ac.uk

Tel: 020 7955 6238