title: The experience of parenting an adolescent with spina bifida.
abstract: Parents of adolescents with spina bifida (SB) face unique challenges of which they may not be aware. The purpose of this study was to heighten awareness of the challenge of parenting such adolescents. This enhanced understanding can help rehabilitation professionals optimize their interventions with families. In this qualitative study, which was part of a larger mixed-method descriptive investigation exploring adaptation by adolescents with SB, we used content analysis to evaluate 20 parent interviews for common domain, themes, and subthemes. The analysis yielded four major domains: (a) daily life experiences, (b) the dance of individuation, (c) reflections on parenting, and (d) practice suggestions for healthcare professionals. Overall, experiences of the parents were positive. Parents described meeting daily demands and balancing independence-dependence needs with the adolescent as major challenges. Rehabilitation professionals must provide guidance to foster autonomy, decision making, cognitive skill building, and coping skills to help parents and adolescents manage independence-dependence issues and multiple life demands.
authors.affiliation: School of Nursing, Virginia Commonwealth University, Spina Bifida Program, Children's Hospital, Richmond, VA, USA. sawin@uwm.edu
authors.forename: Kathleen J
authors.initials: KJ
authors.lastname: Sawin
authors.forename: Melissa Hayden
authors.initials: MH
authors.lastname: Bellin
authors.forename: Gayle
authors.initials: G
authors.lastname: Roux
authors.forename: Constance
authors.initials: C
authors.lastname: Buran
authors.forename: Timothy J
authors.initials: TJ
authors.lastname: Brei
authors.forename: Philip S
authors.initials: PS
authors.lastname: Fastenau
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000294:Adolescent Behavior; D000328:Adult; D002648:Child; D005195:Family Relations; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D007207:Individuation; D007407:Interviews as Topic; D008016:Life Change Events; D008297:Male; D016487:Parenting / Q000523:psychology*; D036301:Qualitative Research; D012938:Social Perception; D016135:Spinal Dysraphism / Q000451:nursing*