Chronic illnesses, such as Rheumatoid Arthritis (RA), are a growing burden on health care systems worldwide. Self-management emphasises the patient’s central role in managing their illness. This is pertinent given the majority of care is provided by the individual themselves; yet how individuals make sense of self-management in everyday life is largely unseen. Following the Photovoice method, this study used photography to capture people’s lived experience of living with RA. A purposeful sample of eleven participants received cameras and training. They were asked to take photos of their experiences of living with the condition. They discussed their photos with the researcher and shared their perspectives and insight as a group. The purpose of this study was to capture the strengths and concerns of individuals with RA in self-managing their illness, raise awareness of their lived experience and spark a dialogue among stakeholders.
Throughout the Autumn 2019, the participants’ photographs were publicly exhibited at the Mater Hospital and a launch event in a community arts centre.
To view the exhibition catalogue, click on the image below:
These events provided a platform for participants to “voice” their experience to the wider community through their images. In attendance were researchers, health care professionals, advocacy organisations, family and friends, policymakers, as well as members of the public.
Exhibition launch, The Chocolate Factory Arts Centre, Dublin City, 28th September 2019
Members of the public who attended the launch event commented:
“I was completely unaware of the severity and debilitating effect of RA on some people until I accidently came upon this exhibition. Amazing. Thanks”
“Really powerful exhibition, a real reminder that you often don’t know what people are going through. A huge reminder of the saying ‘your health is your wealth’ – which so many people take for granted. This is an important project – well done to all!”
This project was led by social researcher Dr Susie Donnelly, in collaboration with a multi-disciplinary team across social and biological sciences and visual arts, including Prof. Gerry Wilson (UCD Centre for Arthritis Research), Prof. Thilo Kroll and Dr Hasheem Mannan (UCD School of Nursing, Midwifery and Health Systems), and Dublin-based filmmaker and visual artist, Claire Dix.
Public exhibition on Hospital Street, Whitty Wing of the Mater Hospital, 14th -18th October 2019
Funding was awarded from the UCD Wellcome Trust Institutional Strategic Support Fund as part of a Medical Humanities and Social Science Collaboration Scheme (ref 204844/Z/16/Z).
In July 2020, Dr Donnelly was invited by Elsevier, a world-leading publisher of science and health information, to give a webinar How to Build Empathy in Research? on techniques and lessons from photovoice research: researcheracademy.elsevier.com/communicating-research/social-impact/build-empathy-research
Donnelly, S, Kroll, T, Mannan, H & Wilson, AG. Participatory Action Research: Using Photovoice to Explore Solutions to Self-Managing Rheumatoid Arthritis. 2018 Annual Conference: A Collaborative Approach to Arthritis & Rheumatic Disease Research, in association with the Patient Voice in Arthritis Research. University College Dublin. Dublin, Ireland [Oral presentation].
Donnelly, S, Kroll, T, Mannan, H & Wilson, AG. I’m Here But I’m Not: A Photovoice Study of Self-Managing Rheumatoid Arthritis. 2019 Annual Conference: A Collaborative Approach to Arthritis & Rheumatic Disease Research, in association with the Patient Voice in Arthritis Research. St Andrews Resource Centre. Dublin, Ireland [Poster presentation]. Winner of the “Clarity in Research Medal”, a research poster competition judged by patients and members of the public.
Donnelly, S, Kroll, T, Mannan, H & Wilson, AG. I’m Here But I’m Not: A Photovoice Study of Self-Managing Rheumatoid Arthritis. 2019 UCD Medicine Research Symposium, UCD Conway Institute, Dublin, Ireland [Poster presentation].
Donnelly, Susie; Kroll, T, Mannan, H, Manning, M &Wilson, AG. (2020) “I’m Here But I’m Not”: The Negotiated Self & Biographical Disruption in the Self-Management of Invisible Illness. British Sociological Association Annual Conference 2020: Reimagining Social Bodies: Self, Institutions and Societies. [Accepted for Oral presentation, conference cancelled]
Donnelly, S, Kroll, T, Mannan, H, Dix, C, Wilson, AG (2020) I’m Here But I’m Not: A Photovoice Study of the lived experience of Self-Managing Rheumatoid Arthritis. European League Against Rheumatism (EULAR) E-Congress
If you would like further information about this study, contact: rheumatology@ucd.ie.