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NCT Number: NCT07774663

Legacy Photo-narrative Study

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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Key information

Conditions

Children With Medical Complexity (CMC) Family Caregivers

Age range

3 month and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Phase 2

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

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.

Primary outcomes

  1. 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)

  2. 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

Secondary outcomes

  1. Meaning and purpose

    Time frame: 1- and 3-months post-enrollment

    NIH PROMIS Meaning and Purpose Scale

  2. Hope

    Time frame: 1- and 3-months post-enrollment

    State Hope Scale

  3. Therapeutic alliance

    Time frame: 1- and 3-months post-enrollment

    Human Connection Scale

Sponsors and collaborators

Lead sponsor

Seattle Children's Hospital

Other

Collaborators

  • Monroe Carell Jr. Children's Hospital at Vanderbilt

Registry information

Official study title

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

Important dates

Study start
2027
Primary completion
2028
Study completion
2028
First posted
Aug 19, 2026
Registry last updated
Aug 19, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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