Friday, 14 January 2005 - 2:00 PM

This presentation is part of: Psychosocial Impact of Medical Illness and Disability

Creating a Life of One's Own: An Evidence-Based Model of Transitions for Youth with Physical Disabilities

Purpose: Transition preparation, planning for future autonomous self-management of one’s health, is as an essential dimension of quality health care for youth with chronic health conditions. While adolescence is popularly recognized as a pivotal life phase, little is known about the unique experiences of young people with physical disabilities as they move through this transition, particularly from the perspective of the person with a disability. Research suggests that young people with life-long disabilities face greater barriers in achieving independence and may need more active cooperation from their family in order to reach this goal. A further complicating factor is that this sensitive transition occurs at a time when young adults with physical disabilities are leaving comprehensive child and family-centred systems, such as school and pediatric rehabilitation centres, to enter a fragmented, client-driven adult system (Tower, 1994). This presentation reports on research examining social adaptation to a childhood chronic health condition or disability and the factors and events that influence transitions to independence.

Methods: Qualitative investigations of the experiences of young adults (n=20) with physical disabilities with respect to transitions to independence and sources of social support. Conceptually, this research is informed by the tenets of the independent living movement and the social model of disability theory. Grounded theory methods informed by participatory research were employed. The co-principal investigator is a leading disability rights activist in Canada and the team was comprised of consumers, service providers and researchers. Recognized criteria for trustworthiness in qualitative research were employed including theoretical sampling, sampling to saturation, prolonged engagement, triangulation, member-checking, thick description and clear audit trail.

Results: We interviewed 20 participants, 10 women and 10 men; whose average age was 31 years old (range from 21 – 50 years). All participants had a life-long disability, with the majority (12/20) reporting their disability as cerebral palsy. Consistent with the multicultural nature of urban Ontario, Canada more than half of the participants reported strong ties to a cultural or religious heritage. While key themes were person-centred: taking charge, knowing and liking yourself, exerting control and setting goals; it became clear to us that there were a number of other influential forces at play. Some of these forces were supportive, such as being encouraged by family and key contacts with professionals, many others were obstructive, such as negative images and attitudes about disability, low expectations and service gaps.

Implications for Practice or Policy: Social workers are well-positioned to take a systemic perspective with regarding interventions with persons with physical disabilities. These findings suggest an emphasis on supporting consumer control and choice, negotiating whether parents can form an important on-going support in adults years and advocating within systems for higher expectations with respect to goals and outcomes for persons with physical disabilities.

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