Legacy Photo-narrative Study

NCT07774663 — Phase 2, Not yet recruiting, 40 participants, Seattle Children's Hospital

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

Registry	NCT07774663
Status	Not yet recruiting
Phase	Phase 2
Study type	Interventional; randomized, parallel, masking: none, supportive care
Enrollment	40 (Estimated)
Sponsor	Seattle Children's Hospital (Other); collaborators: Monroe Carell Jr. Children's Hospital at Vanderbilt
Conditions	Children With Medical Complexity (CMC), Family Caregivers
Interventions	Photo-narratives (Behavioral)
Dates	start 2027-06-01 (estimated), primary completion 2028-04-01 (estimated), completion 2028-06-15 (estimated), first posted 2026-08-19, last updated 2026-08-19

-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.

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+Arms and interventions

Arm	Type	Interventions	Description
Control	No intervention		Usual care control
Photo-narratives	Experimental	Behavioral: Photo-narratives

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.

+Outcome measures

Primary outcomes

Feasibility [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)
Acceptability [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

Secondary outcomes

Meaning and purpose [1- and 3-months post-enrollment]: NIH PROMIS Meaning and Purpose Scale
Hope [1- and 3-months post-enrollment]: State Hope Scale
Therapeutic alliance [1- and 3-months post-enrollment]: Human Connection Scale

+Eligibility

Sex: All, ages: 3 Months to any

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