219338 Transition from Pediatric to Adult Primary Care: Hearing from Youth with Special Health Care Needs

Tuesday, November 9, 2010

Anna Maria Lenhart, MPH , Program Manager/Research Associate, New Editions Consulting, Inc., McLean, VA
Sabrina Matoff-Stepp, PhD , HRSA Office of Women's Health, Rockville, MD
Bonnie B. Strickland, PhD , Maternal and Child Health Bureau/Division of Services for Children with Special Health Care Needs, Health Resources and Services Administration, Rockville, MD
Elizabeth Tewey, MS , Vice President, New Editions, McLean, VA
Background As more youth with special health care needs (YSHCN) grow into adulthood, a need exists to explore transition from child to adult primary care, including behavioral, mental, and reproductive health services from a youth perspective, as well as similarities and differences from a sex/gender perspective. The HRSA Office of Women's Health and Maternal and Child Health Bureau/Division of Children with SHCN, and HHS Office on Disability and Office on Women's Health, collaborated with New Editions to hold 4 Discussion Groups with YSHCN. Methods Participants were recruited through groups serving YSCHN ages 18-27. Demographic information was collected. Groups followed a semi-structured 90-minute teleconference discussion format. The team analyzed session tapes for themes. Results Fourteen youth participated (6 women, 8 men); 2 responded during 30-minute phone interviews. Defining “transition” as navigating within the adult healthcare system and moving from parent to patient-centered care was a common theme. Women focused on long-term effects of diet and exercise; violence in relationships; and reproductive health. Men focused on insurance benefits; supporting a family; and financial concerns. Conclusions The discrepancy between “transition” as defined for research/funding purposes and by YSHCN was a major finding. Participants identified the need for providers to talk to them rather than their parents. Themes specific to men and women show early evidence for a need to further explore sex-specific issues. Public Health Implications Understanding transition and navigation from the perspective of YSHCN is essential to develop supports, services and systems. Promising Practices Inclusion of YSHCN in research efforts/provider training.

Learning Areas:
Advocacy for health and health education
Planning of health education strategies, interventions, and programs
Program planning
Public health or related organizational policy, standards, or other guidelines
Public health or related public policy
Public health or related research

Learning Objectives:
Identify the importance of engaging youth with special health care needs in health care transition planning, policy, and research. Discuss transition and navigation within the adult healthcare system from the perspective of youth with special health care needs. Explore the implications of failing to include youth with special health care needs in the development of supports, services and systems.

Keywords: Adolescent Health, Children With Special Needs

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to present because I manage and conduct qualitative research focusing on health and health care system experiences.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.