07 Partnering with patients with living and lived experience of eating disorders to improve inpatient care on an acute paediatric medicine unit
Authors: Dhaliwal Rabiah , Jassemi Sara , Scott Aidan , Calibaba Brittany , Gill Sabrina , Kennedy Meghan 
Published: October 2024

Background

Since the COVID-19 pandemic, hospitals nationally are seeing a growing number of adolescent patients with eating disorders requiring acute medical stabilization, which is often a time of crisis in the trajectory of this ego-syntonic disorder. The complexity of these admissions often lead to safety events for patients and moral distress for clinicians. Medical admissions can also be an opportunity to engage youth and families. Patient partners are a pillar in healthcare quality improvement, but historically we have not engaged adolescent patient partners in improving acute eating disorder treatment. We gathered the experience of patients and families with living and lived experience of eating disorder treatment to improve their quality of care in an acute paediatric medicine unit.

Objectives

We aimed to describe the experience of patients and families with living and lived experience of eating disorder treatment, specifically acute medical stabilization, through a quality improvement patient engagement project.

Design/Methods

We used a mixed-methods design of semi-structured interviews and a focus group with adolescents with eating disorders and their caregivers in an acute medical unit at a tertiary paediatric hospital in British Columbia. We employed opportunity sampling by distributing recruitment flyers through patient experience councils, outpatient clinics, other non-acute units, and to all patients admitted with a medically unstable eating disorder at our hospital during the study period. The interviews consisted of open-ended questions, yes/no questions, and Likert scales related to four categories: admission process, inpatient experience, team communication, and discharge process. Two reviewers analyzed the qualitative data using thematic analysis, and the quantitative data was analyzed descriptively. Quality improvement projects are exempt from Research Ethics Board approval. However, we utilized the "A Project Ethics Community Consensus Initiative" (ARECCI) Ethics Guideline and Screening Tool and presented our proposal at the hospital's quality improvement and research oversight committees.

Results

We completed 8 interviews with patients with current living experience admitted to our acute medical unit. We also completed 1 interview with a patient with past lived experience and 1 focus group with patients and caregivers. Primary themes identified included uncertainty about their overall treatment journey and stress due to the sudden new expectations on the inpatient unit, such as activity restriction, meal plans by the hospital, and bathroom access after meal times. Patients identified the importance of relational care, inclusion in treatment planning, acknowledgement of the demanding nature of eating disorders, and individualized care. Due to variability in training, resource allocation, and gaps in communication, these patient-identified priorities are not always met. While 100% of participants stated they understood the reasons and goals for admission, participants averaged 3.7 on a 1 (lowest) to 5 (highest) Likert scale when asked to rate their satisfaction with the information they received. Five out of eight adolescents felt that there was consistency in communication within the team.

Conclusion

We demonstrate the complex needs of patients with eating disorders who require acute medical stabilization. Targeted knowledge mobilization initiatives through admission orientation documents and family-centered rounds could better meet those needs. We are currently developing an admission pamphlet and journal for patients admitted with a new eating disorder to our medical unit. Patient partners exhibited a high willingness to participate in our study and readily acknowledged the importance their contributions could hold for other patients.