Relational care infrastructures for people living with rheumatic diseases in a rural Japanese community: a community-engaged qualitative study informed by CBPR principles

People living with rheumatic diseases require long-term self-management, continuous medical care, and psychosocial support. In rural and aging communities, limited access to specialist care, transportation barriers, and social isolation may affect patients’ ability to manage symptoms and maintain daily life. However, little is known about how people with rheumatic diseases are supported through local relationships, peer networks, family roles, and community-based resources in rural settings. This study aimed to explore relational care infrastructures that support people living with rheumatic diseases in a rural Japanese community and to identify implications for improving rural rheumatology care. We conducted a community-engaged qualitative study informed by CBPR principles. Participants were recruited through a local patient association and a rural community hospital. The study included 35 unique participants: 24 people living with rheumatic diseases and 11 family members or informal supporters. Data were collected through eight individual interviews, ten couple or family interviews, and two group dialogue sessions. All sessions were audio-recorded, transcribed verbatim, and analyzed using reflexive thematic analysis. The analysis identified six interconnected relational care infrastructures. Peer dialogue helped participants make sense of uncertain symptoms, treatment experiences, adverse effects, and long-term illness trajectories. Trusted care provided by rheumatology specialists and hospital-based generalist physicians served as an anchor of security, particularly when patients faced diagnostic uncertainty or difficulty accessing rheumatology expertise. Patient associations provided emotional support, disease-specific information, and opportunities for mutual learning, while facing challenges related to aging membership, transportation, and sustainability. Everyday community conversations embedded in exercise groups, neighborhood interactions, walking, farming, and informal gatherings supported self-care and reduced isolation. Maintaining roles in work, family, community activities, and local production helped participants sustain identity beyond illness. Clinicians played a bridging role by connecting medical evidence with patients’ lived experiences, peer support, and community resources. Rural rheumatology care was described as embedded in relationships with clinicians, peers, family members, patient associations, and everyday community life. These findings may inform future patient-partnered co-design and evaluation of locally adapted support alongside improved access to rheumatology expertise.