Supporting Students with Endometriosis: A Canadian Perspective

Endometriosis is a chronic disease in which endometrial-like tissue (similar to the tissue normally present within the uterus) begins to accumulate outside of the uterus, resulting in pain, reduced fertility, and pelvic mass growth (Becker et al., 2022). While research on endometriosis focuses on women, the current dissertation strives to also be inclusive of individuals born with a uterus but who do not identify as women; thus, gender-neutral terms will also be used throughout so as not to assume a participant’s gender. No cure currently exists for endometriosis (Acién & Velasco, 2013; Björk et al., 2020). The condition affects approximately one in 10 individuals of childbearing age worldwide (Gambone et al., 2002), including both adults and adolescents (Ballweg, 2015). Individuals of all ages with endometriosis often experience depression, fear, and anxiety, as well as a decreased quality of life associated with the debilitating pain that the condition can cause (Friedl et al., 2015; Laganà et al., 2017). Individuals may further experience adverse effects on their daily activities, such as attending school or work. Due to the general lack of awareness of endometriosis and the social stigma surrounding menstruation, individuals are frequently uninformed of the symptoms associated with endometriosis or are unaware of the condition before their diagnosis (Seear, 2009). Individuals reporting symptoms of endometriosis may wait seven to 12 years before receiving a diagnosis (Agarwal et al., 2019; Singh et al., 2020; Soliman et al., 2017; Treloar et al., 2010). The first study presented in this dissertation is a scoping review of in-school supports (i.e., services, resources, academic accommodations, and practices available in schools) available worldwide for students experiencing any form of chronic pain. Articles were analyzed using a descriptive numerical summary analysis and a qualitative thematic analysis, following Arksey and O’Malley’s (2005) scoping review framework. A total of 32 articles comprising 28 studies were included. The scoping review highlighted six themes relating to in-school support: knowledge, collaboration, in-school therapy, consulting school health professionals, building positive relationships, and academic accommodations. The in-school services were reported for students across various types of chronic pain, suggesting that the supports may be applicable to all students experiencing chronic pain. Barriers to implementing in-school supports included insufficient school resources and a need for education on chronic pain. The second study of this dissertation consisted of a mixed-methods research design in which an online survey was distributed to individuals who have experienced endometriosis while attending school to understand what types of in-school services might be beneficial. Gender theory, biopsychosocial theory, and the social-ecological modal of disability guided the development of the survey. Statistical analyses were conducted with the quantitative data, and a thematic analysis was conducted with the selected open-ended questions in the survey. One hundred and seventy-four participants provided responses to the survey. Participants reported experiencing stigma in the school setting. Several different types of in-school support were reported as necessary, and responses were consistent with the results from the scoping review. The results from Studies 1 and 2 further highlight the importance of supporting students with endometriosis and to consider the impact endometriosis has on students’ lives, including in their school settings. Keywords: chronic pain, in-school support, school, endometriosis