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  • Title: The experience of self-management in adolescent women with spina bifida.
    Author: Sawin KJ, Bellin MH, Roux G, Buran CF, Brei TJ.
    Journal: Rehabil Nurs; 2009; 34(1):26-38. PubMed ID: 19160922.
    Abstract:
    It is essential for youth with chronic health conditions like spina bifida (SB) to develop self-management skills to combat vulnerability, achieve self-sufficiency, and transition to adulthood. The purpose of this qualitative study was to describe the experience of self-management in 31 adolescent women with SB. Three themes emerged from this study: (1) opportunities to engage in self-management activities--knowledge, skills, and aspirations; (2) dance of individuation--parental impact on self-management; and (3) advocacy within self-management--confronting discrimination and stigma. The findings indicate that assessment and interventions to enhance self-management in adolescent women with SB are critical for supporting the range of condition-related and life skills needed for a transition to adulthood and independent living.
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