Understanding the role of health care providers during the transition of adolescents with disabilities and special health care needs

Purpose: To evaluate the role of health care providers in the transition from pediatric to adult health care for adolescents with disabilities and special health care needs (SHCN) from both the families' and providers' perspectives.

Methods: A total of 753 parents of adolescents with SHCN (e.g. developmental, physical, behavioral/emotional, learning, or health-related disabilities) were surveyed by questionnaire to assess their perceptions of their health care provider's level of involvement in various transition activities and the extent to which they felt it was the provider's responsibility to assist in a particular activity. One hundred forty-one health care providers (primarily pediatricians) completed a parallel survey to assess their level of participation in the same transition activities and the extent to which they felt it was their responsibility to assist with each transition activity. The questionnaire listed 13 different transition activities health providers may engage in to help young people prepare for adulthood and also asked questions about areas such as employment and health insurance. To investigate whether parents and providers share the same views regarding the involvement and responsibility of providers across the 13 transition activities, two sets of Student's t-tests were calculated.

Results: There were significant differences between providers and parents concerning both the level of provider involvement and the extent to which it was the provider's responsibility to assist in various transition activities (e.g., health providers reported significantly more involvement than did parents for 11 of the 13 transition activities and, compared with parents, providers reported that it was more within their role to assist in these 11 transition activities).

Conclusions: The findings suggest a need for health care providers and parents to have open discussions about the nature and extent to which providers assist families in key transition activities.