Patient Voice: Participatory action research to support the self management of rheumatoid arthritis

Project’s Duration: 01-Feb-18 to 30-May-2020

Funding for this research was awarded from the UCD Wellcome Trust Institutional Strategic Support Fund, which was financed jointly by University College Dublin and the SFI-HRB-Wellcome Trust Biomedical Research Partnership. As part of a Medical Humanities and Social Science Collaboration Scheme, it is conducted between the School of Nursing, Midwifery and Health Systems, and the Centre for Arthritis Research, University College Dublin.

Project’s Description:

‘…Different people do not meet the same problems when ill for the simple reason that their social and bodily circumstances are not identical’ – A. Radley, 1989

How do people experience the burden of self managing a chronic illness? It is a burden that is largely invisible and often difficult to express to family, friends and health care professionals. Rheumatoid arthritis (RA) is a highly prevalent chronic disease affecting about 1% of the global population, and approximately 40,000 people in Ireland. It is characterised by inflammation of the joints and tendons causing pain, stiffness, and swelling. Without proper treatment, it is associated with increased mortality, disability and reduced life expectancy. Organisations such as Arthritis Ireland offer self management education programmes, yet there remains a substantial proportion of people living with the condition who are potentially not engaged in effective self management practices. We need a better understanding of why this is the case and how these individuals currently manage their condition.

By using photovoice, a participatory action research technique, this project works with people living with rheumatoid arthritis to capture their experience. This way it generates a better understanding of everyday life with a chronic illness. It will then seek to collaboratively design an intervention to support the self management of RA.

Ultimately, this project intends to place the patient voice at the centre of the research process. Findings from this work are intended to improve society’s understanding of what it is like for people to live with rheumatoid arthritis and offer ways to best support them.