Legacy Photo-narrative Study
Trial statusNot yet recruiting
Trial phasePhase 2
Trial typeInterventional
Biological sexAll
Age3+
SponsorSeattle Children's Hospital
About this trial
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.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
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
Disqualifiers
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
Trial design
Design model
Parallel
Treatments tested in this trial
Photo-narratives
BehavioralPhoto-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.
Treatment groups
40 Participants
are divided into 2 treatment groupsGroup A: ControlNo intervention 0 interventions
Group B: Photo-narrativesExperimental treatment 1 intervention
Trial outcomes
Primary outcomes
1
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 years2
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 yearsSecondary outcomes
1
Meaning and purpose
NIH PROMIS Meaning and Purpose Scale
Time frame
1- and 3-months post-enrollment2
Hope
State Hope Scale
Time frame
1- and 3-months post-enrollment3
Therapeutic alliance
Human Connection Scale
Time frame
1- and 3-months post-enrollmentLocations
Sponsors and contacts
Click on the lead sponsor to view all of their trials.
Seattle Children's Hospital
Lead sponsor
Monroe Carell Jr. Children's Hospital at Vanderbilt
Collaborator
Source ClinicalTrials.gov
This trial is not recruiting at the moment. You can still explore other options: