Understanding the Role of Peer Support in Managing Juvenile Idiopathic Arthritis: A Qualitative Study among Dutch Young Adults

Background: Diagnosing a chronic disease, such as juvenile idiopathic arthritis (JIA), can significantly impact a person's life, particularly for young adults transitioning from adolescence to adulthood. This period of increased independence and responsibility is further complicated by physical challenges (e.g., joint swelling, pain, stiffness, and fatigue) and psychosocial issues (e.g., social isolation, depression, and anxiety). While peer support has been recognized as a valuable resource for managing these psychosocial challenges, there is limited research on its specific role for young adults with JIA. This study aims to explore how Dutch young adults with JIA perceive and utilize peer support in managing their condition. Methods: This qualitative study used semi-structured interviews based on a predefined interview guide. Eleven participants, aged 18 to 30 and diagnosed with JIA, were recruited through purposeful and snowball sampling methods. Thematic content analysis was used to identify and analyze themes from the collected data. Results: Participants highlighted deficiencies in professional support, as rheumatologists frequently overlook the psychosocial aspects of JIA. Family and friends provide valuable emotional and instrumental support, but often lack a full understanding of the complexities of JIA. Participants highlighted the crucial role of peer support in managing JIA, providing emotional and informational support. Emotional support offered by peers included understanding, empathy, and normalization of experiences. Informational support included practical advice and problem-solving strategies. Despite the benefits, barriers such as stigma, physical limitations, and insufficient awareness about peer support opportunities were mentioned. Conclusions: Peer support is a valuable resource for young adults with JIA, helping with the navigation of psychosocial challenges associated with the condition. The findings emphasize the importance of incorporating peer support into support systems for young adults with JIAand addressing barriers to enhance accessibility and effectiveness. Healthcare professionals are encouraged to engage in discussions about the psychosocial impacts of JIA and provide more information about peer support. A support system that combines clinical care, support from loved ones, and peer support is essential for addressing both the physical and psychosocial needs of young adults with JIA.