Enabling better carer involvement: a qualitative evaluation of the involvement service belonging to a carers organisation in the United Kingdom

Background: Globally, unpaid carers face economic and societal pressures. Unpaid carers’ support is valued at £132 billion a year in the United Kingdom (UK) alone. However, this care comes at a high cost for the carers themselves. Carers providing round the clock care are more than twice as likely to be in bad health than non-carers. These carers are therefore proportionately more likely to need statutory services such as health care provision. It is critical that carers are better supported to be involved in the shaping, delivery and evaluation of the services they receive. Unfortunately, qualitative evidence on how carer organisations can do this better is scarce. Methods: Working collaboratively with a community-based carers organization, we undertook a qualitative study. Purposive sampling was used to recruit 23 participants. Online, semi-structured, one-to-one interviews were conducted with carers, community organization staff and stakeholders to ascertain their experience and views on the involvement service. Results: Firstly, there are a range of benefits resulting from the involvement service. The carers see the service as an opportunity to connect with other carers and share their views and ideas. Secondly, staff and service providers also reported how involvement gave a platform for carers and was of value in helping them shape needs-led services. Thirdly, we found that barriers to good involvement include the lack of a clearly understood, shared definition of involvement as well as the lack of a diverse pool of carer representatives available for involvement activities. Conclusion: The findings from our study provide important insights into how carers, staff and service stakeholders view barriers and enablers to good involvement. The findings will be of interest to a range of community-based organizations interested in further involving members of their community in shaping the services they receive.