"Some distance between us:" a mixed methods study exploring experiences of remote care for eating disorders during COVID-19

Introduction: COVID-19 necessitated a rapid move from face-to-face services to remote care for eating disorders/eating distress (EDs). This study explores the advantages and challenges of remote care, identifying future implications for service provision. Methods: Using a mixed methods approach, data were collected from 211 people with lived experience (PWLE); 27 participating in semi-structured interviews/workshops and 184 via an online survey. Participants reported on their ED status; the impact of the pandemic on symptoms; benefits and challenges of remote care (and type of support accessed); any reasons for not accessing support; and future recommendations. Participation was open to PWLE with and without formal diagnosis. Results: ED symptoms were reported as worsening during the pandemic with contributing factors including isolation, lack of routine, negative emotions, and feeling like the external situation was outside of one’s control. Exercise was reported as a coping mechanism (although it is noted that responses did not allow for clarifications of respondents’ understanding of what constitutes healthy or unhealthy exercise). Remote care was positively attributed to increased flexibility and facilitation of social connection. However, identified barriers to access included a lack of awareness about support availability, digital access and/or literacy, and competing commitments (e.g., childcare). Further challenges included approaches being perceived as too clinical; uncertainty around remote care quality, and concerns that remote platforms may facilitate masking of symptoms. Participants also reflected heavily upon distress caused by default self-view during video calls. Participants expressed a need for more holistic approaches including “real stories” of recovery, and hybrid (online and offline) options for greater flexibility and widening of access choices; complimented by appropriate training to mitigate digital literacy barriers. Discussion: Future recommendations emphasise user-centered holistic, hybrid approaches to ED remote support, supported by training to address digital literacy barriers and facilitate user control of platform functionalities (e.g., self-view). The study underscores the need for continued remote care with a focus on inclusivity and user empowerment.