A qualitative study of people with inflammatory arthritis and their partners’ perspectives on partner participation in rheumatology consultations

Abstract Objective Cohabitating partners of people with inflammatory arthritis, such as rheumatoid arthritis, psoriatic arthritis and spondyloarthritis, require information on disease management to support people and navigate their roles. Partner participation in rheumatology consultations could potentially facilitate this but this remains unexplored. This study investigated both people with arthritis and their partners perspective on partner participation in rheumatology consultations. Methods People with arthritis and their partners were recruited through patient organization, social media, and rheumatology departments. Interview guides were co-developed with five patient research partner couples. Data was collected via focus groups and individual interviews and analysed separately for people with arthritis and partners using reflexive thematic analysis. Results Five focus groups and 15 individual interviews were conducted with 19 people with inflammatory arthritis and 11 partners. People with arthritis themes included: 1) Partner participation as a matter of coincidence, 2) Longing for more to be addressed, 3) Ambivalence about support needs, and 4) Need for organizational changes. Partner themes included: 1) Being able to provide support is the main goal, 2) Burdened by the lack of support, and 3) Creating a space for partners. Conclusion Partners are not systematically included in consultations and partner participation is influenced by both people with inflammatory arthritis awareness and needs, and the level of facilitation by health professionals. Beyond knowledge, partners received little support during consultations. Both people with inflammatory arthritis and partners expressed a desire for consultations to enhance partners ability to participate and for health professionals to address the broader impact of inflammatory arthritis.