title: The experience of self-management in adolescent women with spina bifida.
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.
authors.affiliation: Children's Hospital of Wisconsin, Milwaukee, USA. sawin@uwn.edu
authors.forename: Kathleen J
authors.initials: KJ
authors.lastname: Sawin
authors.forename: Melissa H
authors.initials: MH
authors.lastname: Bellin
authors.forename: Gayle
authors.initials: G
authors.lastname: Roux
authors.forename: Constance F
authors.initials: CF
authors.lastname: Buran
authors.forename: Timothy J
authors.initials: TJ
authors.lastname: Brei
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000223:Adaptation, Psychological; D000293:Adolescent; D001294:Attitude to Health; D006233:Persons with Disabilities / Q000523:psychology* / Q000534:rehabilitation; D005260:Female; D006040:Goals; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007206:Individuality; D009730:Nursing Assessment / Q000379:methods; D015404:Nursing Methodology Research; D010287:Parent-Child Relations; D010379:Peer Group; D000297:Psychology, Adolescent; D036301:Qualitative Research; D012648:Self Care / Q000379:methods / Q000523:psychology*; D016135:Spinal Dysraphism / Q000523:psychology* / Q000534:rehabilitation; D013240:Stereotyping; D011795:Surveys and Questionnaires; D014930:Women / Q000193:education / Q000523:psychology*