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. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2014. / FAU Electronic Theses and Dissertations Collection

Indiana University-Purdue University Indianapolis (IUPUI) / Technology dependent children such as those who require a feeding tube, tracheotomy or ventilator are a special group of chronically ill children who require complex care on a daily basis. When these children are hospitalized, the accompanying parent and the nurse caring for the child on the inpatient unit must communicate together about the care of the child. Care for the technology dependent child is optimized when parents and nurses both understand the plan of care for the child. To discover the process of parent-nurse communication that results in mutual understanding of the child’s plan of care, a grounded theory study to explore the perspectives of the parents of previously hospitalized technology dependent children was undertaken. The Theory of Shared Communication emerged from the data and illuminates the parent-nurse communication process. The antecedents of the process are respect for own and others expertise. The communication process consists of six communication behaviors; ask, listen, explain, advocate, verify understanding and negotiate roles. The behaviors are nested within each other and all are not necessarily required for the non-linear process to result in the relational outcome of mutual understanding of the child’s plan of care. An integrative review of the literature regarding the process of communication between parents of hospitalized chronically ill children and their nurses shed light on the components of the process, but no study was found that explicated the entire communication process. A subsequent grounded theory study added the perspectives of the nurses to the original theory. No new components of the process were uncovered, but the nurse’s narratives added significantly to our understanding of the communication process. Additionally, parents of currently hospitalized technology dependent children confirmed the propositions of the Theory of Shared Communication.