Journal of palliative medicine · 2026
The Qualitative Impact of Incorporating Photo-Narratives into the Care of Children with Severe Neurological Impairment: Parent and Clinician Perspectives.
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Oslin Ellie, Baumgarten Nell E, Julian Elizabeth, McDermott Annie, Bogetz Jori
Аннотация
BACKGROUND: 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.
OBJECTIVE: This study aimed to examine the potential impact of photo-narratives in the inpatient setting.
DESIGN: 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.
SETTING/SUBJECTS: Parents of children with SNI and clinicians at a single U.S. children's hospital.
MEASUREMENTS: 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.
RESULTS: 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.
CONCLUSION: Photo-narratives have the potential to promote humanistic care among parents of children with SNI and inpatient clinicians.
OBJECTIVE: This study aimed to examine the potential impact of photo-narratives in the inpatient setting.
DESIGN: 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.
SETTING/SUBJECTS: Parents of children with SNI and clinicians at a single U.S. children's hospital.
MEASUREMENTS: 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.
RESULTS: 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.
CONCLUSION: Photo-narratives have the potential to promote humanistic care among parents of children with SNI and inpatient clinicians.