Transition to Adult-Oriented Health Care: Perspectives of Youth and Adults with Complex Physical Disabilities

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.

KEYWORDS. :

• Transition
• disability
• qualitative
• patient perspectives

Notes

1 The term health care services was broadly defined and participants were probed to discuss their experiences with health care services of all types by asking them to describe their health, then what types of help they need related to their health. This was followed by more specific probes asking whether there were any health care professionals they see and where.

2 Rural was defined as > 30 min drive outside a community of < 10,000 and > 60 min drive outside a city of ≥10,000. Small cities had populations of 10,000 to 99,999. Large cities had populations of 100,000 to 499,999. Metropolitan cities had populations > 500,000 and included suburbs.

3 Population densities in Northern Ontario average 1 person per square kilometre in comparison to southern Ontario where the population density is greater than 100 persons per square kilometre.