Abstract

Osteogenesis Imperfecta (OI) is a rare genetic disorder resulting in deficient or defective
type 1 collagen and impacting 1 in 15,000 people in North America (National Institutes of Health
2019). The resulting weakness of bones and connective tissues, separated into distinct diagnostic
categories according to severity (van Dijk et al. 2015), leads to physical limitations (Tsimicalis et
al., 2016), acute and chronic pain (Nghiem et al., 2017), fear of accidents, and multiple quality of
life concerns (Dahan-Oliel et al., 2016; Tsimicalis et al., 2016). The challenges children with OI
face across the biopsychosocial spectrum remain little documented. With no cure, OI treatment
involves treatments that improve bone fragility, but greater efforts are needed to optimize overall
quality of life (Dwan, Phillipi, Steiner, & Basel, 2016). As most funded scientific studies focus on
medical outcomes of OI, little research, let alone creation of knowledge mobilization artifacts,
have been produced to address varying ethical concerns arising in the OI community such as
social isolation (Tsimicalis et al., 2016), feelings of ‘otherness’ (Siedlikowski et al, 2020),
description of oneself as a ‘mutant’ (De Carmoy, 2004); being frequent recipients of larger
societal discourses about genetic screening (Dogba et al., 2014), selective pregnancy termination
(Coors & Townsend, 2006), and disparaging messages related to disability (Coors, 2014). This
study used open ethnodramatic interviews to explore children's desire for participation in their
healthcare, hospital-to-school transitions as well as inclusivity in their school settings.