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Larkin, Mary; Milne, Alisoun; Henwood, Melanie; Croisdale-Appleby, David and Clark, Michael (2017). Including Family Carers: Adding Value and Impact to Research. The NIHR School for Social Care Research The School for Social Care Research, London.
URL: http://www.sscr.nihr.ac.uk/wp-content/uploads/Care...
Abstract
As family carers we are not a homongeneous group but come in all shapes and sizes, and play an invaluable role in society. We have a variety of experiences, and expertise in the needs of the person or people we care for or have cared for as well as our own experiences of being carers. Across the diverse group of carers and caring situations, we each have our own individual voice which may differ from that of the person we care for.
Yet, in research studies our voices are sometimes excluded or only sought when the cared for person is unable to give their own views. The focus on services or the cared for person can sometimes ignore the experience and expertise carers bring to an issue. Often the symbiotic nature of the caring relationship is not recognised; so when the focus is on interventions for the cared for person the resulting impact on their carers is overlooked. There is no doubt that more research is needed on the role, needs and support for carers. But ther is also no doubt that the voice of carers needs to be captured across all health and social care studies even when the focus is on the cared for person.
This report, from a workshop organised by the Independent Advisory Group on Carers and the NIHR School for Social Care Research, highlights the pivotal role carers play in the effectiveness of future health and social care-related research. Carers can be valuable partners, providing unique inputs into all stages of research design, from forming the research question to the methodology, analysis and in sharing the findings.
Our voice as carers needs to become an integral part of all health or social care-related research studies. There are actions that research funders, research teams, the health and social care sectors, and carers can take to make this happen. This report highlights some of these but it is important that actions follow. The first step is to recognise carers as a distinct, diverse and valuable group in research.
We welcome positive steps being taken to achieve the priorities set out in this report.
CORE (COnnecting REpositories)
CORE (COnnecting REpositories)
