A Phase 2 interventional study of Photo-narratives in Children With Medical Complexity (CMC) and Family Caregivers, sponsored by Seattle Children's Hospital. Not yet recruiting. Open to participants aged 3 Months and older. Per ClinicalTrials.gov, last updated 2026-08-19.
Sponsored by Seattle Children's Hospital · Phase 2, Interventional, and Supportive care
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.
Seattle Children's Hospital is the lead sponsor of 215 studies on the registry; 44 are open to participants now.
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Exclusion Criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
The study doctor’s estimate of how long someone is likely to live. Criteria use it so that people can stay in the study long enough for it to answer its question.
Life expectancy
The study doctor’s estimate of how long someone is likely to live. Criteria use it so that people can stay in the study long enough for it to answer its question.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Usual care control
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.
Feasibility
percent enrolled (enrolled parents/total approached) and percent completion (parents completing intervention/total randomized to the intervention)
Time frame: 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
Time frame: From first enrollment to end of intervention completion at about 2 years
Meaning and purpose
NIH PROMIS Meaning and Purpose Scale
Time frame: 1- and 3-months post-enrollment
Hope
State Hope Scale
Time frame: 1- and 3-months post-enrollment
Therapeutic alliance
Human Connection Scale
Time frame: 1- and 3-months post-enrollment
No study locations are listed for this record.
Start is estimated for Jun 2027; primary completion for Apr 2028, 10 months later.
How these figures are worked out, and which studies are left out of them.
This study is not yet recruiting, as verified in Aug 2026. You cannot join it, but the record below documents what was studied.
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