Wellness in the Midst of Disease: A Narrative Analysis of Growing Up with Rheumatic Conditions

Abstract

Rheumatic diseases affect approximately 300,000 U.S. children and cause inflammation of cartilage, bones, connective tissues, and internal organs. More than half of these children may experience life-long disability, chronic pain, and potent medication side effects (David et al., 1994; Foster et al., 2003; Hersh, von Scheven, & Yelin, 2011). Due to recent advancements in the treatment of rheumatic conditions, little is known about the long-term physical or psychosocial outcomes of childhood-onset rheumatic conditions (Duffy, 2004). Thus, the primary aim of the present study was to use a developmental and ecological approach to capture rich descriptions of the physical and psychosocial development of young adults living with childhood-onset rheumatic diseases during the transition into adulthood. Purposeful sampling was used to recruit 12 young adults (ages 25-35) with childhood-onset rheumatic diseases from rheumatology clinics in the Twin Cities metro area and the Arthritis Foundation. Participants engaged in up to three one-hour long interviews; multiple interviews allowed for increased depth and reflection time. A semi-structured interview guide was used to probe about the experience of growing up with rheumatic diseases, current health status, and coping mechanisms. Interviews were audio-recorded, transcribed, and data were coded with the assistance of NVivo software (QSR, 2012). Thematic analysis highlighted commonalities across participant narratives and was guided by the narrative model described by Lieblich, Tuval-Mashiach, and Zilber (1998), as well as Erikson's construct of Vital Involvement (VI: Kivnick & Wells, 2014). Eight categories and 27 themes emerged from the data. Findings from this study have the potential to make significant theoretical and practical contributions to social work, rheumatology, and beyond.