Transition experiences of the chronically ill adolescent

The continued development of the American health care system and evolving
technology have led to an increased life expectancy within the general population. In fact, these advancements have also resulted in growing numbers of young people with chronic illnesses living into adulthood. Approximately one third of children ages 10-17 have a chronic disease, and the vast majority of these children will survive beyond their 20th birthday (Blum, 1995; Lotstein, McPherson, Strickland, & Newacheck, 2005; White,
2002). The main objective of this study was to explore the healthcare transition (HCT)
practices of health care providers and the HCT experiences of chronically ill young adults living with sickle cell disease, cystic fibrosis, and/or diabetes. Meleis, Sawyer, Im,
Hifinger Messias, & Schumacher’s (2000) theory on transition and Boykin and
Schoenhofer’s (2001) theory of Nursing as Caring provided the theoretical lenses throughwhich study findings were viewed. This was a descriptive exploratory mixed methods design that consisted of survey data and used conventional content analysis to analyze the qualitative data. The quantitative portion of this study incorporated a 41-question survey that was completed by 33 health care providers working with chronically ill young adults in the southeast Florida region. Additionally, semi-structured interviews were conducted with eight young adults (18-24 years of age) living with a sickle cell disease, cystic fibrosis, and/or diabetes. Five themes emerged from an analysis of the data describing the healthcare transition (HCT) experience: Transition Confusion, Familial Reliance, Lost in Transition, Fiscal Stressors, and Transition Uneasiness. The findings of this study demonstrate that there are, at minimum, three general parts of the HCT process that remain deficient: educational preparation, consistent communication between all parties involved in the HCT process, and guidance for the independent negotiation of the present healthcare system.
Recommendations for healthcare providers that work with chronically ill young
adults include establishing a HCT framework that incorporates consistent communication among team members and patients/families, individualized educational formats, and guidance for navigational skills to negotiate the healthcare system.