Perceptions of transitional care needs of adolescents and young adults with special healthcare needs and their parents.

Background: As children with special healthcare needs (SHCN) mature, they will transition from pediatric to adult healthcare providers. Close to 80% of adolescents with SHCN reported not receiving services necessary for transition to adult health care. The purpose of this study was to examine the perceptions of the transition experience of Adolescents and Young Adults (AYA) and their parents. Participants were diagnosed with either inflammatory bowel disease or a congenital heart condition. Methods: A qualitative descriptive study was conducted with participants recruited from specialty pediatric care clinics that served patients with inflammatory bowel disease and congenital heart conditions. Study procedures (recruitment, consent, interview guide) were approved by the clinic staff, the hospital steering committee, and the University IRB. Interviews with AYA and with parents were conducted separately, transcribed, and then coded to identify themes. Results: Interviews were completed with 8 AYA and 8 parent dyads. The identified themes were Transfer of Care, Mastery, and Support. The Transfer of Care theme reflected participants' worries about moving from their pediatric provider to the new adult provider. The Mastery theme revealed participants lacked confidence in their self-management skills. In the Support theme, participants wanted to be prepared and familiar with the transition process and to become comfortable in the new adult world. Conclusions: Recommendations shared with clinic providers were to start conversations that directly addressed the transition process early, to provide information and to encourage the AYA to ask questions. In addition, the clinics could encourage AYA to start being responsible for the routine clinic visit paperwork with guidance from the parent.