Moral distress in pediatric complex care coordinators: a reflexive thematic analysis

Moral distress can occur in situations where one wants to follow a desired course of action but experiences restraints from internal and external barriers. Unaddressed moral distress is associated with negative outcomes (e.g., burnout). Due to the nature of their work with medically and neurodevelopmentally complex children and their families, pediatrics complex care coordinators are at risk of experiencing moral distress. However, there is limited understanding of moral distress in this professional population. Study objectives were to: (1) understand how pediatric complex care coordinators at a tertiary pediatric hospital defined moral distress; (2) explore factors that influence and modulate moral distress in these care coordinators; and (3) explore the impacts of moral distress on care coordinators.

Semi-structured virtual interviews were conducted with twelve pediatric complex care coordinators from a pediatric tertiary care centre to explore experiences with moral distress. Interviews ranged from 25 to 60 min. Interview transcripts were examined by two researchers using inductive reflexive thematic analysis for each objective. The data were analyzed and coded and a 15-point checklist was utilized throughout each phase of the analysis process for consistency amongst coders.

All participants reported experiencing moral distress using the seminal definition of moral distress. Care coordinators added additional context and depth to this definition. Factors influencing and modulating moral distress in care coordinators were identified: (1) restrictiveness of their scope and capacity; (2) individual experiences; (3) availability of coping mechanisms; (4) the nature of their interactions; and (5) resolution. Four themes on the impact of moral distress were also identified: (1) changes in perspective; (2) impacts on well-being; (3) need for internal and external change; and (4) influence on interpersonal relationships.

An expanded definition of moral distress was co-created with care coordinators and identified factors that influenced moral distress and impacts of moral distress. This work is an important first step to developing a better understanding of moral distress in care coordinators and could inform future interventions to address moral distress in this population.