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Purpose Children with chronic illnesses are living longer, prompting health care provider attention to the transition from pediatric to adult care. Transition of care is successful when youth are independent in managing their health. The aims of this study were to identify the strengths and barriers to transition from pediatric to adult care and to determine strategies that could enhance the transition process. Methods A survey was administered via a structured interview to 33 young adult participants (19 to 27 years of age), living with Chronic Granulomatous Disease (CGD) all of whom transitioned from pediatric to adult care. The participants were predominately male (88%) and Caucasian (73%). Topics covered in the survey included understanding of disease and treatment, adherence, advance care planning, and barriers to transition. Data was analyzed using a conventional content analysis approach. Results Seventy-six percent of the participants did not understand their disease process and only fifty percent understood their prophylactic medication regimen. Seventy-five percent of participants perceived their transition as uneventful. Ninety-four percent were independent in self-management skills such as making appointments and ninety percent in refilling prescriptions. More than half of the participants thought that the transition process needed improvement. Specific suggestions to create a practical approach to transition were offered. Conclusions Gaps in disease-related knowledge and transition planning were identified by adolescents and young adults living with CGD. The findings suggest the need for enhancing the transition process utilizing interdisciplinary collaboration to develop a transition policy and program.

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Despite the increasing trend of travel for medical purposes, little is known about the experience of parents and other caregivers who come to the United States specifically to obtain medical treatment for their seriously ill child. In this exploratory, descriptive qualitative study, we used a semi-structured narrative guide to conduct in-depth interviews with 22 Spanish or English-speaking caregivers about the challenges encountered and adaptation required when entering a new medical and cultural environment. Caregivers identified the language barrier and transnational parenting as challenges while reporting hospital staff and their own families as major sources of support. Using the results of the study as a guide, clinical and program implications are provided and recommendations for social work practice discussed.