Obeid, NicoleSilva-Roy, PatriciaBooij, LindaCoelho, Jennifer S.Dimitropoulos, GinaKatzman, Debra K.2024-03-312024-03-312024-03-29Journal of Eating Disorders. 2024 Mar 29;12(1):43https://doi.org/10.1186/s40337-024-00986-1https://hdl.handle.net/1880/118355https://doi.org/10.11575/PRISM/43197Abstract Background The onset of the COVID-19 pandemic has had an adverse impact on children, youth, and families with eating disorders (EDs). The COVID-19 pandemic exacerbated pre-existing personal and financial costs to youth, caregivers, and health professionals accessing or delivering ED services. The objectives of this mixed methods study were to (1) understand the indirect, direct medical and non-medical costs reported by youth, caregivers, and clinicians; (2) understand how the COVID-19 pandemic may have impacted these costs, and (3) explore implications of these costs with regards to barriers and resources to inform future decisions for the ED system of care. Methods Youth (aged 16–25 years) with lived/living experience, primary caregivers, clinicians, and decision-makers were recruited with support from various partners across Canada to complete group specific surveys. A total of 117 participants responded to the survey. From those respondents, 21 individuals volunteered to further participate in either a discussion group or individual interview to provide additional insights on costs. Results Youth and primary caregivers reported costs relating to private services, transportation and impacts of not attending school or work. Additionally, primary caregivers reported the top direct medical cost being special food or nutritional supplements (82.8%). In discussion groups, youth and caregivers elaborated further on the challenges with long waitlists and cancelled services, impact on siblings and effect on family dynamics. Clinicians and decision-makers reported increased work expectations (64.3%) and fear/isolation due to COVID-19 in the workplace (58.9%). Through discussion groups, clinicians expanded further on the toll these expectations took on their personal life. Approximately 1 in 3 health professionals reported contemplating leaving their position in 1–2 years, with greater than 60% of this group stating this is directly related to working during the pandemic. Conclusions Findings demonstrate the need for increased support for youth and caregivers when accessing ED services both during crisis and non-crisis times. Additionally, attention must be given to acknowledging the experience of health professionals to support better retention and resource management as they continue to navigate challenges in the health care system.Plain English summary The COVID-19 pandemic has had significant impacts for children, youth and families with eating disorders (EDs) and those who care for them. The objective of this study was to understand the impacts on financial and personal costs to youth, caregivers and clinicians when either accessing or delivering ED services during the pandemic. This study consisted of an online survey and discussion groups with youth (16-25 years old) with lived experience of an ED, primary caregivers, clinicians and decision-makers delivering ED services to understand the costs they experienced. Although many reported costs were financial, including direct medical costs (i.e. private therapy) and direct non-medical costs (i.e. transportation, accommodation costs), there were also significant personal costs to individuals and their families. Healthcare professionals also reported extensive challenges with resources and increased work expectations due to the pandemic context. Acknowledging the costs experienced by young people, families and healthcare professionals during the pandemic allows for the discussion of how we can better support those accessing or delivering ED services in times of crisis and non-crisis.Journal Article2024-03-31enThe Author(s)