First Advisor

Correa-Torres, Silvia M.

First Committee Member

Peterson, Lori Y.

Second Committee Member

Davis, Jackie

Third Committee Member

Parker, Amy T.

Degree Name

Doctor of Philosophy

Document Type

Dissertation

Date Created

8-2024

Department

College of Education and Behavioral Sciences, Special Education, Special Education Student Work

Abstract

Youth with Usher syndrome (USH) can experience unique challenges in postsecondary preparation. Currently, there is a paucity of research addressing the postsecondary preparation experiences of youth with USH. The purpose of this study was to learn from college students with USH about their lived experiences of preparing for postsecondary education; specifically, exploring K-12 educational supports, transition planning, and support systems that helped youth with USH prepare for postsecondary education. Due to the unique nature of this microcosm of deafblindness, qualitative and phenomenological methods were best suited for this study to garner first-hand accounts of those who have experienced this phenomenon themselves. A purposeful sample of 10 college students with USH engaged in individual interviews and focus groups guided by critical DeafBlind theory (CDBT) and Bronfenbrenner's ecological systems theory. A collective narrative was derived from these in-depth interviews, focus groups, and individualized reflective prompts. Additional data were collected through researcher notes to corroborate findings. Credibility and trustworthiness were addressed throughout the study through the qualitative means of triangulation, bridling, member checking, and peer review. Thematic analysis was completed using NVivo software and hand-coding to identify meaningful units, salient quotes, and emergent themes across participants. Three key themes related to the research questions emerged from the data: (1) limited K-12 educational supports for postsecondary preparation, (2) perceived lack of transition planning and postsecondary preparation, and (3) parents as the strongest support system. As many of the participants in the group recalled little to no transition planning or postsecondary preparation, this led to three additional themes: (4) discrepancy in Deaf/Hard of Hearing and vision services, (5) the multifaceted impact of USH, and (6) navigating the medical diagnosis. Sub-themes related to the anticipated and unanticipated themes will also be discussed. Implications for practice for educators, professionals, and families include: (a) promoting earlier diagnosis by creating resources and better USH screening processes, (b) having a DeafBlind specialist on the educational team, (c) the importance of an individualized transition plan, and (d) recognizing that the USH population is evolving. Future research on peer mentorship, mental well-being, and working with diverse youth with USH is recommended. The shared narratives of these participants provide unique insights for parents, educators, professionals, youth with USH, and researchers. The results of this study can be used to inform future evidence-based research. Further, the findings of this study add to the limited body of research on the lived experiences of transition-age youth with USH preparing for postsecondary education.

Abstract Format

html

Extent

188 pages

Local Identifiers

BrownOgilvie_unco_0161D_11251.pdf

Rights Statement

Copyright is held by the author.

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