title: The experience of adolescent women living with spina bifida part I: self-concept and family relationships.
abstract: Adolescent women with spina bifida (SB) face unique and diverse challenges. The purpose of this qualitative component of a larger mixed-method study on adaptation was to heighten rehabilitation nurses' understanding of self-concept and family relationships during adolescence. Interviews were conducted with 31 adolescent women and analyzed for themes. The women described a range of experiences, including challenges of typical adolescence, specific concerns about living with SB, school-based stressors, and incidences of teasing and bullying. The overall self-concept was primarily positive, despite the diverse stressors encountered. A significant source of strength was the close relationships with parents, although an undercurrent of tension related to independence was also expressed. Results from this study support the need for rehabilitation nurses to address not only the functional status but also the well-being and psychosocial challenges of adolescent women with SB.
authors: University of Maryland, School of Social Work, Baltimore, MD, USA.
authors: Melissa Hayden
authors: MH
authors: Bellin
authors: Kathleen J
authors: KJ
authors: Sawin
authors: Gayle
authors: G
authors: Roux
authors: Constance F
authors: CF
authors: Buran
authors: Timothy J
authors: TJ
authors: Brei
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000293:Adolescent; D000294:Adolescent Behavior / Q000523:psychology; D001294:Attitude to Health; D005195:Family Relations; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008603:Mental Health; D008960:Models, Psychological; D024802:Nurse's Role / Q000523:psychology; D015404:Nursing Methodology Research; D000297:Psychology, Adolescent; D036301:Qualitative Research; D019145:Rehabilitation Nursing; D012307:Risk Factors; D012649:Self Concept; D012919:Social Behavior; D016135:Spinal Dysraphism / Q000150:complications / Q000451:nursing / Q000523:psychology* / Q000534:rehabilitation; D013315:Stress, Psychological / Q000209:etiology / Q000517:prevention & control / Q000523:psychology; D011795:Surveys and Questionnaires