Adult care transitioning for adolescents with special health care needs: a pivotal role for family centered care

Abstract

To examine the relationship between having a usual source of care, family centered care, and transition counseling for adolescents with special health care needs. Data are from 18,198 parents/guardians, of youth aged 12-17 years, who participated in the 2005-2006 National Survey of Children With Special Health Care Needs. Linear and logistic regression models were used to define relationships between parent report of identification of a usual place and provider of medical care for their child and counseling on four transition issues: transfer to adult providers, review of future health needs, maintaining health insurance in adulthood, and youth taking responsibility for care. The direct mediating effect of family centered care was evaluated. Youth having a usual source of care (vs. not) were more likely to receive counseling on future health needs (47.4 vs. 33.6%, P < 0.001) and taking responsibility for their own care (79.3 vs. 64.4%, P < 0.001). Having a high level of family centered care (vs. low) was also associated with high rates of discussing future health needs (56.3 vs. 39.6%, P < 0.001) and encouragement to take responsibility for care (91.2 vs. 70.3%, P < 0.001). Family centered care mediated 39.1% of the effect of a usual source of care on discussion of future health needs and 94.9% of the effect of a usual source of care on encouragement to take responsibility for care. Study findings support the development of health care delivery models focusing on family centered care to the same degree as other health care access issues.