Date of Award

2017

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Psychology

Abstract

Parents and families of youth who are chronically ill are felt to have increased distress during the transition from youth into adulthood (Rapanaro, Bartu, & Lee, 2008). While parents historically have expressed some satisfaction with the transition services being provided, the research has only looked at individuals with severe intellectual disabilities and not at youth who are also medically fragile (Neece, Kraemer, & Blacher, 2009). Additionally, both the school and the medical field are shown to have needs to connect with the community; however, neither the school nor the medical community has been shown in the literature to work together with the parents to ensure a smooth and complete transition from school to adulthood. The present study expands on the current literature in two important ways: (a) by examining the youth who are medically fragile and severely intellectually delayed (MFSID) and (b) by including interviews with the medical personnel and parents in the analysis. Twelve interviews were conducted to examine the needs and perspectives of parents regarding the transitioning process. A purposeful sampling with inclusion factors was utilized in the selection of participants. Questions were created and prepared based on my own experience, gaps within the literature, and the goal of gathering information regarding the perception of transition for each of the participants. Interviews were semi-structured, with questions addressing participants experiences in transitioning youth who are medically fragile and severely intellectually delayed. Several themes emerged and aligned closely with the research questions regarding participants, communication, roles, perceived views of transition success, and additional resources that are needed in the transition process. Participants felt frustration, happiness, worry, and—at times—isolation. Overall, the youth who are MFSID are themselves dynamic entities that move in and out of different environments, similar to Bronfenbrenners (1979) theory. Each environment affects the youth and their support systems. Transition success depends on one of two scenarios: (1) Parents, medical staff, and school staff need to increase their communication with one another so that there is appropriate coverage of needed information, or (2) a case manager at the state level should be assigned to help organize and provide a link across many of the systems, focused on a continuation of services throughout the different environments and life course. A website is a possible solution to connect many of these systems to allow both the parents of youth who are MFSID and the youth themselves to feel successful.

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