Research about, and with, carers

Developing good quality knowledge through research and discussion can be critical in bringing about changes for carers at a political and social level. Research can also play a crucial role improving the quality of advice and information given to carers and families.  In turn, this informs how people care and the decisions that they make about looking after a family member. However, there is criticism that some academic research does not focus enough on developing partnerships with carers and families. This can lead to research staying ‘on the shelf’ and not used to its full potential; similarly, this may result in research questions and research projects that do not reflect the priorities of carers and professionals.


There is, then, a need for researchers to be creative about how they work with families and carers, and, at times, for them to challenge ‘traditional’ research methods and ways of thinking about how to build and share knowledge. Over the last fifteen years, inclusive and participatory research has moved from a specialist to a mainstream practice in health and social research.  In broad terms, participatory approaches commit to working in partnership with non-academic stakeholders (e.g. patients, carers, and families) and to share key aspects of decision-making and responsibility with them. The degree of involvement between researchers and the public can vary considerably, ranging from carers and families being involved in advisory or consultation groups, to projects where they play a lead role designing and delivering the research. Participatory research is a growing field and there is lively debate about how best to develop useful, and ethical, working relationships between ‘professional’ and ‘lay’ researchers.  More importantly, perhaps, are questions about how to make sure that this different type of research will be valued and used by a wide range of people, including those designing and delivering health and social care services to carers and families.


There are increasing examples of positive and innovative research between carers, families, and, researchers from academic and professional backgrounds using participatory methods.  This, in turn, has helped to shape and to change what is known about caring and, as importantly, how this knowledge is developed and shared with different people who need and who provide care.


If you are interested in finding out more about participatory research and/ or ways of taking in part in health research, take a look at the links below:


Further information:

If you would like to find out more about getting involved in research visit:

There is more detailed information about how NHS and health research is working in partnership with patients and carers at:

For an overview of the policy commitments made by the NHS to expand and improve its public-patient involvement see: