Legacy Photo-narrative Study

NCT07774663 | Not Yet Recruiting Phase 2 DMC

• 1 other identifier: STUDY00005985
• Study Type: interventional
• Target: 40
• Locations: 0 countries
• Sites: N/A

Brief 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

Outcome Measures

Primary Outcomes (2)

• Feasibility

  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

  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 Outcomes (3)

• Meaning and purpose

  1- and 3-months post-enrollment

• Hope

  1- and 3-months post-enrollment

• Therapeutic alliance

  1- and 3-months post-enrollment

Study Arms (2)

Control

NO INTERVENTION

Usual care control

Photo-narratives

EXPERIMENTAL

Behavioral: Photo-narratives

Interventions

Photo-narratives BEHAVIORAL

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.

Photo-narratives

Eligibility Criteria

• Age: 3 Months+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

• 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

You may not qualify if:

• 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

Sponsors & Collaborators

• Seattle Children's Hospital: lead
• Monroe Carell Jr. Children's Hospital at Vanderbilt: collaborator

Study Design

• Study Type: interventional
• Phase: phase 2
• Allocation: RANDOMIZED
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate Professor

Study Record Dates

• First Submitted: August 12, 2026
• First Posted: August 19, 2026
• Study Start (Estimated): June 1, 2027
• Primary Completion (Estimated): April 1, 2028
• Study Completion (Estimated): June 15, 2028
• Last Updated: August 19, 2026

Record last verified: 2026-08