Transition to adult-oriented health care: perspectives of youth and adults with complex physical disabilities

Phys Occup Ther Pediatr. 2009;29(4):345-61. doi: 10.3109/01942630903245994.

Abstract

Introduction: The transition to adulthood is extremely difficult for individuals with disabilities. We sought to explore the specific issue of transition to adult-oriented health care in a Canadian context.

Methods: We conducted semi-structured individual interviews with 15 youth and 15 adults with cerebral palsy, spina bifida, and acquired brain injuries of childhood, and their parents (n = 30). Respondents discussed their health care services, their experience with clinical transition, and contributing factors. We analyzed the transcripts using qualitative methods.

Results: All participants identified challenges in transition, including: lack of access to health care; lack of professionals' knowledge; lack of information and uncertainty regarding the transition process. Two solutions were identified: early provision of detailed information and more extensive support throughout the clinical transition process.

Discussion: The challenges of clinical transition were universal. More extensive information and support is needed during transition to ensure an efficient move to appropriate adult-oriented health care.

MeSH terms

  • Adolescent
  • Adult
  • Attitude
  • Brain Injury, Chronic
  • Cerebral Palsy
  • Communication
  • Continuity of Patient Care* / organization & administration
  • Disabled Persons*
  • Health Services Accessibility
  • Humans
  • Parents / psychology
  • Patient Satisfaction
  • Social Support
  • Spinal Dysraphism
  • Young Adult