The Canadian Journal for the Scholarship of Teaching and Learning - Issue 1 - An Exploration of Quality of Life among Ontario Postsecondary Students Living with the Chronic Illness Ehlers-Danlos Syndrome

Oct 15, 2026

Ehlers-Danlos Syndrome (EDS) is a connective tissue disorder linked to adverse health outcomes, potential periodic or permanent disability, and psychosocial stress. Although diagnosis can occur at any age, psychosocial impacts can be especially difficult during postsecondary education. This qualitative study explored how EDS affects the quality of life of Ontario postsecondary students (n=11). Online eligibility screening was followed by one-to-one semi-structured interviews, with thematic analysis identifying emotional strain, faculty and peer attitudes, judgment and stigmatization, and frustration as key factors influencing quality of life.

LanguageEnglish

CategoryResearch & Report

FormatPDF

Pages20

Reading Time50 min

AccessFree to download

Abstract

Recommended Citation

Keywords

Introduction

Literature Review

Ehlers-Danlos Syndrome

The Canadian Journal for the Scholarship of Teaching and Learning | Volume 11 | Issue 1 | Article 2 | | --- | --- | | Summer 06-30-2020
An Exploration of Quality of Life among Ontario Postsecondary Students Living with the Chronic Illness Ehlers-Danlos Syndrome
Catherine M. Giroux
University of Ottawa, [cgiro049@uottawa.ca](cgiro049@uottawa.ca)[ ](cgiro049@uottawa.ca)Lorraine Carter
McMaster University, cartel1@mcmaster.ca Julie Corkett
Nipissing University, [juliec@nipissingu.ca](juliec@nipissingu.ca)
Follow this and additional works at: [https://www.cjsotl-rcacea.ca](https://www.cjsotl-rcacea.ca)
[https://doi.org/10.5206/cjsotl-rcacea.2020.1.10766](https://doi.org/10.5206/cjsotl-rcacea.2020.1.10766) | | Recommended Citation Giroux, C. M., Carter, L., & Corkett, J. (2020). An exploration of quality of life among Ontario postsecondary students living with the chronic illness Ehlers-Danlos Syndrome. The Canadian Journal for the Scholarship of Teaching and Learning, 11(1) . [https://doi.org/10.5206/cjsotl-rcacea.2020.1.10766](https://doi.org/10.5206/cjsotl-rcacea.2020.1.10766) An Exploration of Quality of Life among Ontario Postsecondary Students Living with the Chronic Illness Ehlers-Danlos Syndrome Abstract Ehlers-Danlos Syndrome (EDS) is a connective tissue disorder that results in negative health events. It also holds potential for periodic or permanent disability and psychosocial stress. While a diagnosis of EDS can occur at any age, the psychosocial effects of an EDS diagnosis can be especially challenging when symptoms present during postsecondary education. This qualitative study examined the psychosocial effects of EDS on the quality of life of Ontario postsecondary students (n=11). After a brief online eligibility survey, one-to-one semi-structured interviews were conducted. Thematic analysis of interview data revealed that emotional factors such as anxiety and depression, faculty and peer attitudes including issues of judgment and stigmatization, and feelings of frustration affect the quality of life of postsecondary students living with EDS. Le syndrome d’Ehlers-Danlos est une maladie qui affecte les tissus conjonctifs et qui cause de gros problèmes de santé . Elle peut également causer des incapacités périodiques ou permanentes et du stress psychologique. Le diagnostic de syndrome d’Ehlers-Danlos peut survenir à n’importe quel âge, toutefois les effets psychosociaux du diagnostic de cette maladie peuvent être particulièrement difficiles quand les symptômes sont présents parmi les étudiants universitaires. Cette étude qualitative a examiné les effets psychosociaux de cette maladie sur la qualité de vie des étudiants universitaires de l’Ontario (n=11) . Après une brève enquête d’admissibilité en ligne, des entrevuesindividuelles semi-structurées ont été menées. Les données de l’analyse thématique des entrevues ontrévélé que les facteurs émotionnels tels que l’anxiété et la dépression, les attitudes des professeurs et des autres étudiants, ainsi que les questions de jugement et de stigmatisation et les sentiments de frustration, affectent la qualité de vie des étudiants universitaires qui sont atteints du syndrome d’Ehler-Danlos. Keywords chronic illness, Ehlers-Danlos Syndrome, quality of life, postsecondary education, Ontario; maladie chronique, , syndrome d’Ehler-Danlos qualité de vie, enseignement post-secondaire, Ontario This research paper/Rapport de recherche is available in The Canadian Journal for the Scholarship of Teaching and Learning: [https://doi.org/10.5206/cjsotl-rcacea.2020.1.10766](https://doi.org/10.5206/cjsotl-rcacea.2020.1.10766) The experience of postsecondary education is regarded by some to be the best time of a person’s life. It is a time to study areas of special interest, grow as an individual, and enjoy the unique extracurricular and social activities of college and university life. While this representation of post-secondary education applies

FAQs

What disorder is studied, and why is it relevant to students?

The study focuses on Ehlers-Danlos Syndrome (EDS), a connective tissue disorder that can cause adverse health events and psychosocial stress. The document explains that symptoms during postsecondary education can make psychosocial effects particularly challenging.

How was the qualitative study conducted?

The researchers used a brief online eligibility survey and then conducted one-to-one semi-structured interviews. Thematic analysis was applied to interview data from Ontario postsecondary students living with EDS (n=11).

Which themes were found to affect students’ quality of life?

Thematic findings highlighted emotional factors such as anxiety and depression, attitudes from faculty and peers including judgment and stigmatization, and feelings of frustration as influences on quality of life.

Oct 15, 2026

Upload by Anna Hans