Legacy Photo-narrative Study

August 17, 2026 updated by: Jori Bogetz, Seattle Children's Hospital

Photo-narratives as a Legacy Intervention for Children With Medical Complexity and Their Families

Children with medical complexity (CMC) live full meaningful lives that are often short. CMC and their families experience substantial distress, poor mental health, and low emotional well-being. Existing research and our prior studies suggest that legacy, defined as the summation of qualities and experiences that form the child's enduring presence, can be a resource for actionable appraisal of and coping with stressful life experiences. Photo-narratives are a novel intervention that facilitate family sharing of images to tell stories about everyday experiences related to their child's quality-of-life and personhood. In our prior studies, families reported that photo-narratives were a simple, easy way to meaningfully connect and had the potential to be an important part of their child's legacy. What remains poorly understood, however, is how photo-narratives might impact family-centered outcomes. This study aims to and evaluate the feasibility, acceptability, and potential impact of photo-narratives in a pilot randomized controlled trial.

Study Overview

Status

Not yet recruiting

Conditions

Intervention / Treatment

Study Type

Interventional

Enrollment (Estimated)

40

Phase

  • Phase 2

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Child
  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Description

Inclusion Criteria:

  • has a child who receives care at one of the study sites for a complex medical condition and is followed by the complex care and/or palliative care team
  • has a child who is ages 3 months through 25 years old
  • has a child who has previously been home/discharged
  • has a child whose life expectancy of >6 months

Exclusion Criteria:

  • are not the child's identified parent/legally authorized representative
  • has a preferred language of care other than English or Spanish
  • has an active psychiatric or chronic health concerns that preclude research participation
  • has active child protective services involvement

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Primary Purpose: Supportive Care
  • Allocation: Randomized
  • Interventional Model: Parallel Assignment
  • Masking: None (Open Label)

Arms and Interventions

Participant Group / Arm
Intervention / Treatment
No Intervention: Control
Usual care control
Experimental: Photo-narratives
Behavioral: Photo-narratives
Photo-narratives are created by patients/families and include a series of captioned photos focused on who is important in their family, information about their quality of life, and their strengths. The narrative is accompanied by clinician prompts to facilitate patient/family-clinician discussion and engagement.

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Feasibility
Time Frame: From first enrollment to end of intervention completion at about 2 years
percent enrolled (enrolled parents/total approached) and percent completion (parents completing intervention/total randomized to the intervention)
From first enrollment to end of intervention completion at about 2 years
Acceptability
Time Frame: From first enrollment to end of intervention completion at about 2 years
Percentage of intervention parents likely or very likely to recommend the intervention to other parents out of total randomized to the intervention
From first enrollment to end of intervention completion at about 2 years

Secondary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Meaning and purpose
Time Frame: 1- and 3-months post-enrollment
NIH PROMIS Meaning and Purpose Scale
1- and 3-months post-enrollment
Hope
Time Frame: 1- and 3-months post-enrollment
State Hope Scale
1- and 3-months post-enrollment
Therapeutic alliance
Time Frame: 1- and 3-months post-enrollment
Human Connection Scale
1- and 3-months post-enrollment

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Seattle Children's Hospital

Collaborators

Monroe Carell Jr. Children's Hospital at Vanderbilt

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Estimated)

June 1, 2027

Primary Completion (Estimated)

April 1, 2028

Study Completion (Estimated)

June 15, 2028

Study Registration Dates

First Submitted

August 12, 2026

First Submitted That Met QC Criteria

August 17, 2026

First Posted (Actual)

August 19, 2026

Study Record Updates

Last Update Posted (Actual)

August 19, 2026

Last Update Submitted That Met QC Criteria

August 17, 2026

Last Verified

August 1, 2026

More Information

Terms related to this study

Other Study ID Numbers

  • STUDY00005985

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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