PARE0033 I’M HERE BUT I’M NOT: A PHOTOVOICE STUDY OF THE LIVED EXPERIENCE OF SELF-MANAGING RHEUMATOID ARTHRITIS
Authors: S. Donnelly, T. Kroll, H. Mannan, C. DIX, A. G. Wilson
Journal: Annals of the Rheumatic Diseases (2020)

Background: Rheumatoid arthritis (RA) is a widespread chronic disease affecting about 1% of the population in the West. It is characterised by pain, fatigue and inflammation that can flare-up without warning. This makes the condition difficult to predict and manage. Bury (1982) introduced the concept of chronic illness as a disruptive experience to one’s self-identity. This is often an invisible part of managing the illness and taken for granted by others, such as family members, friends and health care professionals. Thus, there is a need to raise awareness of the patients’ lived experiences of self-managing this long-term chronic illness. Objectives: We aimed to collaborate with people with RA to (i) record and reflect the community’s strengths and concerns; (ii) raise awareness of the lived experience of self-managing RA (iii) spark a dialogue among key stakeholders around the self-management of RA. Methods: A purposeful sample of people with RA (n=12) was recruited. An innovative qualitative methodology, Photovoice, was used (Wang &amp; Burris, 1997). A series of small group workshops took place. Participants were provided with cameras and appropriate training. They were asked to take photographs of the “challenges and solutions to living with RA ” over approximately two weeks. Semi-structured interviews were conducted incorporating photo elicitation. As a group, the participants, a visual artist and researcher co-created a photo exhibition for the public. Results: Participants selected 32 photographs for the exhibition. They carried out a thematic analysis of the photos identifying four themes: • I’m Here but I’m Not – this theme reflected feelings of alienation and social isolation. • Medicine in all its forms – this theme captured attitudes towards medication and devices, as well as the creative ways people coped with RA. • Visible illness – this concerned the recognition of RA. It captures the experience of RA as a “contested illness” and the challenge of gaining medical and cultural legitimacy. • Mind yourself – this theme highlighted the value of self-care, often closely connected with the natural world and engagement with social activities. Exhibitions were held at a community arts centre and a large central hospital in Dublin city. A plain language report was also collaboratively produced. Conclusion: This study shows how participatory methods can be used to explore the hidden experience of living with an invisible illness. This research design enabled participants to use photographs to reflect on their experiences and the meaning they intended to convey, thereby increasing trustworthiness of the findings through individual and group member checking. This approach extends beyond traditional written and verbal responses to share the worldview of participants. It demonstrates how to work with patients to create opportunities to improve awareness and spark dialogue among those who play a role in supporting the self-management of chronic illness. The integration of creative arts and participatory methods can have a positive impact for those involved in research and can enhance public engagement with research. References: [1]Bury, Michael (1982) Chronic Illness as Biographical Disruption. Sociology of Health &amp; Illness. 4. 167-82. [2]Wang, C., &amp; Burris, M. A. (1997). Photovoice: Concept, Methodology, and Use for Participatory Needs Assessment. Health Education &amp; Behavior , 24 (3), 369–387. Acknowledgments: Funding is 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). As part of a Patient and Public Involvement (PPI) strand, a Research Advisory Group composed of people living with RA was supported the design and execution of this project. Disclosure of Interests: None declared