Children With Medical Complexity (CMC), Family Caregivers
Conditions
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.
Interventions
BEHAVIORALPhoto-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.
Sponsors
Seattle Children's Hospital
Monroe Carell Jr. Children's Hospital at Vanderbilt
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
3 Months to No maximum
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| 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
| Measure | Time frame | Description |
|---|---|---|
| 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 |
Outcome results
None listed