A Photo-Narrative Intervention for Children With Severe Neurological Impairment in the PICU

Abstract

Context: Parents of children with severe neurological impairment (SNI) face barriers in the pediatric intensive care unit (PICU) to humanistic care. Photo-narratives are a promising strategy to share perspectives about well-being.

Objective: This study describes the iterative refinement and lessons learned in adapting a photo-narrative intervention for children with SNI in the PICU.

Methods: This qualitative study was conducted at an academic children's hospital. Participants included parents of children with SNI who completed the photo-narrative during interviews after their child's PICU discharge and provided feedback on intervention design, implementation, and impact. Parents then selected one to three of their child's PICU clinicians to participate. Data from sets of five parents and their corresponding clinicians were transcribed, deidentified, summarized using rapid qualitative analysis, and presented to our multidisciplinary study team who either accepted or dismissed changes. This cycle was repeated a total of three times with new participants to arrive at the final prototype.

Results: Fifteen parents and 19 clinicians participated. Parents were a median of 39 years-old (range 28-55); 20% (n = 3) were fathers. Over half (n = 11) of clinicians had >5 years in their profession. Themes of refinement focused on: enhancing flexibility and ease for families; eliciting information to diminish disability-based biases; and streamlining integration in the PICU environment. Lessons learned included the ability of photos to share family perspectives on quality-of-life, contextualize the child's health status, and enhance child-clinician connection.

Conclusion: Themes and lessons learned from the successful adaptation and refinement of a photo-narrative can inform other interventions designed to humanize care.

Keywords: Pediatric; humanistic care; intervention; neurological impairment.