title: Exploring Experiences of Moral Distress in Pediatric Complex Care Coordinators at Alberta Children’s Hospital
Creators: name: Chahal, Simran Kaur
Publisher: name: Graduate Studies
Year: 2025
Subjects: subject: Care coordination
subject: Pediatric care coordination
subject: Complex care coordination
subject: Reflexive thematic analysis
subject: Children with medical complexity
subject: Pediatric complex care
subject: Health Sciences
subject: Health Care Management
subject: Mental Health
subject: Education--Health
subject: Occupational Health and Safety

description: Background: Moral distress is commonly defined as “when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action.” Unaddressed moral distress is associated with negative outcomes (e.g., burnout). Pediatric complex care coordinators work with children with medical and neurodevelopmental complexity to address health inequalities and harm experienced secondary to fragmented and ineffective care. Due to the nature of their work, these care coordinators are at high risk of experiencing moral distress. However, moral distress has not previously been studied in this population. Objectives: (1) To understand how pediatric complex care coordinators at the Alberta Children’s Hospital (ACH) define moral distress; (2) To explore factors that influence and modulate moral distress in these care coordinators; and (3) To explore the impacts of moral distress on these care coordinators. Methods: Semi-structured virtual interviews were conducted with 12 care coordinators at ACH exploring their experiences with moral distress. Interview transcripts were examined using inductive reflexive thematic analysis for each objective. Results: All participants reported experiencing moral distress. For the first objective, care coordinators defined moral distress as: When one knows the right thing to do, although their values may not align with the patient, family, care team and/or institution, and the institutional constraints make it nearly impossible to pursue the right course of action, and one does not have the ability to change these constraints, leading to feelings of helplessness, powerlessness and frustration. Additionally, there is a risk that what they are doing may not be right, and could cause harm. For the second objective, five themes related to factors influencing and modulating moral distress in care coordinators were identified: (1) role limitations; (2) the subjectivity of the experience; (3) coping mechanisms and support networks; (4) overall communication with involved parties; and (5) if the situation was resolved. Five themes were identified for the third objective, as impacts of moral distress on care coordinators: (1) changes in perspective; (2) emotional well-being; (3) physical and mental health; (4) behavioural changes; and (5) relationships. Conclusion: This study was the first to identify that moral distress is common amongst care coordinators, and to explore their unique experiences with moral distress. We created a novel definition of moral distress that was grounded in the care coordinators’ perspectives, and found negative (e.g., burnout), and positive (e.g., increased reflection) impacts of moral distress. This work is an important first step to better understand moral distress in care coordinators and could inform future interventions to address moral distress in this population.