Wellness in the Midst of Disease: A Narrative Analysis of Growing Up with Rheumatic Conditions
2015-08
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Wellness in the Midst of Disease: A Narrative Analysis of Growing Up with Rheumatic Conditions
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2015-08
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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.
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University of Minnesota Ph.D. dissertation. August 2015. Major: Social Work. Advisor: Helen Kivnick. 1 computer file (PDF); 268 pages.
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Wells, Courtney. (2015). Wellness in the Midst of Disease: A Narrative Analysis of Growing Up with Rheumatic Conditions. Retrieved from the University Digital Conservancy, https://hdl.handle.net/11299/175368.
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