The experiences of family carers of people with learning disabilities: a participatory action research study

Very little is known about family carers’ experiences of providing life-long care. Limited research suggests family carers struggle with accessing services (Neary, 2013), with judgement (Tozer & Atkin, 2015), marginalisation (Twigg & Atkin, 1994), and the burden of co-ordinating multiple services (Hubert, 2010). Participatory Action Research (PAR) is research with rather than on participants (Kindon et al 2007). Very little participatory research has worked with family carers as co-researchers.
The overall aim of this study is to use PAR to understand the experiences of family carers of adults with learning disabilities (LD). Further aims are to: 1) identify the research agenda of family carers of adults with LD; 2) conduct a collaborative research study and 3) disseminate the findings.
In Phase 1, family carers were recruited to form a research group. We set the research agenda for Phase 2, identifying four themes in discussions: 1) lack of carer power; 2) caring for an adult with learning disabilities; 3) what’s not being said and; 4) impact on siblings.
In Phase 2, these themes informed a collaborative research study, to investigate interactions between family carers and service providers. Two online co-produced surveys were completed by 116 family carers and 51 service providers and then co-analysed. The surveys demonstrated the burden placed on family carers, and the lack of understanding by service providers who often perceived disengagement by carers. Carers reported that services were not on their side and that they were not treated as equal partners in supporting their loved one. Results highlight the power imbalances underpinning relationships and carers’ fear of practical consequences resulting from any complaint. The findings were disseminated at a co-produced event to enable collaboration between service providers and carers.
PAR focused the project on carers’ priorities: new knowledge was created about service-carer relationships. PAR also ensured the relevance and reach of the surveys produced. As a result, the project has important implications for policy and for service providers, demonstrating the reform needed to improve partnerships with family carers.