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Legacy Photo-narrative Study

NCT07774663 · Status: NOT_YET_RECRUITING · Phase: PHASE2 · Type: INTERVENTIONAL · Enrollment: 40

Last updated 2026-08-19

No results posted yet for this study

Summary

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.

Conditions

  • Children With Medical Complexity (CMC)
  • Family Caregivers

Interventions

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.

Sponsors & Collaborators

  • Monroe Carell Jr. Children's Hospital at Vanderbilt

    collaborator OTHER

  • Seattle Children's Hospital

    lead OTHER

Study Design

Allocation
RANDOMIZED
Purpose
SUPPORTIVE_CARE
Masking
NONE
Model
PARALLEL

Eligibility

Min Age
3 Months
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2027-06-01
Primary Completion
2028-04-01
Completion
2028-06-15

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT07774663 on ClinicalTrials.gov