Parent Perspectives on the Transition from Pediatric to Adult Health Care for their Children with Chronic Medical Conditions: A Pilot Study

BACKGROUND: The improved treatment of children with chronic medical conditions has led to an increased number of these children surviving into adulthood. This success has also created a responsibility for health care providers to effectively transition adolescents to adult-focused health care, the process of which is known as the health care transition (HCT). Much research on this topic over the past decade has focused on adolescents with chronic medical conditions. However, a limited body of literature exists surrounding the perspective of parents. I have developed the first tool that collects information on parent perspectives of the HCT so we can better prepare them. OBJECTIVES: The primary goal of this feasibility study is to determine if the instrument is simple to administer, with low burden on the respondent, and capable of stimulating valuable parent responses. I will also identify pertinent themes from responses to see if this tool elicits useful information about parent perspectives, attitudes, and understandings of the HCT process. METHODS: The survey was developed to perform as an interviewer-administered tool or as a self-administered pencil-and-paper survey. Parents were recruited from the clinic waiting room of three subspecialty pediatric clinics at the University of North Carolina Children’s Hospital. They were interviewed alone in a private clinic space with the interviewer. Open-ended responses were analyzed with codes using Microsoft Excel. Feasibility was assessed subjectively. Results were not stratified due to the small sample size. RESULTS: 24 total parents agreed to participate in the study. 100% of parents who began the survey completed every question. 87.5% of parents included in this study reported that they had been told their child will need care into adulthood, and 28.6% of these respondents reported ever learning about the process for HCT. The most discussed themes were "trusting child to take responsibility," "taking the supportive role," and "wanting child to demonstrate signs of independence." CONCLUSIONS: This survey captures parent perspectives about the HCT process. Some minor adjustments to the questionnaire may be necessary for future studies to interpret parent perspectives more clearly and to encourage parents to discuss other aspects of their own life that may be related to the HCT, such as their financial constraints, career, or personal health. This tool could be used as an introduction to the HCT and to elicit the level of knowledge of the parent to tailor individual plans to families of children with chronic medical conditions so that they can transition successfully to adulthood.Master of Public Healt