The Qualitative Impact of Incorporating Photo-Narratives into the Care of Children with Severe Neurological Impairment: Parent and Clinician Perspectives.

Abstract

Children with severe neurological impairment (SNI) and their families face many challenges in the hospital setting, where there is limited time to understand the child's full quality of life. Photo-narratives use images to share personal perspectives and may facilitate understanding between families of children with SNI and clinicians. This study aimed to examine the potential impact of photo-narratives in the inpatient setting. Semi-structured audio-recorded interviews were completed with parents after their child's recent hospitalization, as well as with clinicians involved in their child's care. Parents of children with SNI and clinicians at a single U.S. children's hospital. In the first part of the interviews, parents discussed their child's hospital care. In the second part, they created a photo-narrative for their child and discussed its potential impact. Photo-narratives were then viewed by the child's clinicians during similarly structured interviews. Data were analyzed by a multidisciplinary research team using thematic analysis. A total of 56 participants included 27 parents (23 [85%] mothers and 4 [15%] fathers) and 29 multidisciplinary clinicians. Forty-five percent of parents self-identified as having a minoritized racial/ethnic background. Clinicians included 12 (41%) attendings, 10 (35%) nurses, 5 (17%) medical trainees, and 2 (7%) respiratory therapists. Before creating the photo-narrative, themes focused on clinicians' limited perspectives and assumptions. Themes after the photo-narrative focused on its use for medical/developmental applications, understanding the child's full life, and catalyzing humanistic care. Photo-narratives have the potential to promote humanistic care among parents of children with SNI and inpatient clinicians.