THE PSYCHOSOCIAL AND ACADEMIC DEVELOPMENT OF POST-SECONDARY STUDENTS WITH EHLERS-DANLOS SYNDROME IN ONTARIO : a qualitative study

This thesis / dissertation was completed and submitted at Nipissing University, and is made freely accessible through the University of Toronto’s TSpace repositoryEhlers-Danlos Syndrome (EDS) is a connective tissue disorder that results in significant negative health events as well as the potential for periodic or permanent disability. While a diagnosis and its implications can occur at any age, the psychosocial impacts of a new diagnosis can be especially difficult when symptoms present during post-secondary education. This qualitative study examines the psychosocial and academic effects of EDS on post-secondary students in Ontario (n=11) and considers accommodations and supports currently available to affected students. One on one semi-structured interviews were conducted following a brief online eligibility survey that also obtained demographic information. Data were analyzed thematically. Study findings suggest that institutional issues, faculty attitudes, and difficulties with self-advocacy have a substantial academic and psychosocial impact on post-secondary students with EDS. Further, issues pertaining to accommodations and access to services posed a barrier to the attainment of academic success, positive social relationships, and emotional stability. In addition, increasing opportunities for professional development for faculty, staff, and students that promote awareness and accommodation of chronic illnesses like EDS in postsecondary education may address systemic issues pertaining to student disclosure and institutional perceptions about chronic illnesses.M.Ed