Living with juvenile arthritis: adolescents' challenges and experiences.

ABSTRACT

INTRODUCTION: The objective of this study was to identify challenges that teens experience while living with juvenile arthritis (JA) from the perspective of youth and young adults with JA. METHOD: Focus group interviews were conducted with youth (aged 14-21 years) and young adults (aged 22-29 years) with JA using a semi-structured interview protocol that included questions about the challenges adolescents experience while living with arthritis. RESULTS: Challenges of living with JA were identified in the areas of (a) health care, (b) relationships, (c) school, (d) physical, and (e) individual. However, distinct perspectives emerged between youth and young adult participants. For youth, challenges were situated in present time and focused heavily on interpersonal situations. Alternatively, young adults reported challenges that illuminated their experiences of movement from adolescence into young adulthood (e.g., independently managing their JA and disclosure to dating partners). DISCUSSION: Findings from this study display complex and multifaceted experiences that teens face while living with arthritis. Experiences associated with arthritis were not limited to being described as health care-related challenges; rather, arthritis permeates multiple contexts in adolescents' lives.