The experience of self-management in adolescent women with spina bifida

Rehabil Nurs. 2009 Jan-Feb;34(1):26-38. doi: 10.1002/j.2048-7940.2009.tb00245.x.

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.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living / psychology
  • Adaptation, Psychological*
  • Adolescent
  • Attitude to Health*
  • Disabled Persons / psychology*
  • Disabled Persons / rehabilitation
  • Female
  • Goals
  • Health Knowledge, Attitudes, Practice
  • Humans
  • Individuality
  • Nursing Assessment / methods
  • Nursing Methodology Research
  • Parent-Child Relations
  • Peer Group
  • Psychology, Adolescent
  • Qualitative Research
  • Self Care / methods
  • Self Care / psychology*
  • Spinal Dysraphism / psychology*
  • Spinal Dysraphism / rehabilitation
  • Stereotyping
  • Surveys and Questionnaires
  • Women / education
  • Women / psychology*