Evidence map›Paper›PMID 39675393›Full record

ArticleJournal of pain and symptom management2025

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

Jori Bogetz, Ellie Oslin, Emma Meissner, Amy Trowbridge, Jordan Anderson, Liz Morris, Krysta S Barton, Joyce Yi-Frazier, R Scott Watson, Abby R Rosenberg

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of pain and symptom management, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

8 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
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  5. Article
  6. Children With Severe Neurologic Impairment and Their Families in the PICU: A Secondary Qualitative Analysis to Assess Clinician-Family Collaboration and Mutuality.Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2025
    Article
  7. Improving Access to Technology-Driven Critical Care Interventions in Children With Severe Neurological Impairment.Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2025
    Article
  8. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Jori BogetzDivision of Bioethics and Palliative Care (J.B., A.T), Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA; Treuman Katz Center for Pediatric Bioethics and Palliative Care (J.B., A.T.) Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA, USA; Department of Pediatrics (A.R.R.), Harvard Medical School, Boston, MA, USA. Electronic address: jori.bogetz@seattlechildrens.org.
Ellie OslinDepartment of Clinical Psychology (E.O.), University of Wisconsin Milwaukee, Milwaukee, WI, USA.
Emma MeissnerMedical Student (E.M.), University of Washington School of Medicine, Seattle, WA, USA.
Amy TrowbridgeDivision of Bioethics and Palliative Care (J.B., A.T), Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA; Treuman Katz Center for Pediatric Bioethics and Palliative Care (J.B., A.T.) Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA, USA.
Jordan AndersonPediatric Intensive Care Unit (J.A., S.W.), Seattle Children's Hospital, Seattle, WA, USA.
Liz MorrisFamily & Caregiver Collaborator (L.M.), Courageous Parents Network, Boston, MA, USA.
Krysta S BartonStanford Center for Biomedical Ethics (K.S.B.), Stanford University School of Medicine, Palo Alto, CA, USA.
Joyce Yi-FrazierDivision of Psychosocial Oncology and Palliative Care (J.Y.F., A.R.R.), Dana Farber Cancer Institute, Boston, MA, USA.
R Scott WatsonPediatric Intensive Care Unit (J.A., S.W.), Seattle Children's Hospital, Seattle, WA, USA; Division of Critical Care (R.S.W.), Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.
Abby R RosenbergDivision of Psychosocial Oncology and Palliative Care (J.Y.F., A.R.R.), Dana Farber Cancer Institute, Boston, MA, USA; Department of Pediatrics (A.R.R.), Harvard Medical School, Boston, MA, USA.

Funding

A Novel Photo-Narrative Communication Intervention Among Parents of Children with Severe Neurological Impairment in the ICUK23HD107232 · NICHD · SEATTLE CHILDREN'S HOSPITAL · PI Jori Bogetz · 2022 to 2026
$797k
NICHD NIH HHS K23 HD107232
6 · The paper itself

Abstract

contextParents 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.

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

methodsThis 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.

resultsFifteen 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.

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

Indexed as

Intensive Care Units, PediatricNarrationNervous System DiseasesPhotographyAdultChildChild, PreschoolFemaleHumansMaleMiddle AgedParentsQualitative Researchhumanistic careinterventionneurological impairmentPediatric

Identifiers

PMID39675393
PMCPMC11867884

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.