Legacy Photo-narrative Study

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

Overview

Key facts that identify this study and show where it stands today.

What the study is about and why it is being run, in the researchers' own words.

Official Title: Photo-narratives as a Legacy Intervention for Children With Medical Complexity and Their Families
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.

The medical conditions and diseases this study investigates.

The treatments and procedures being evaluated in this study.

Who can join this study and the criteria used to decide.

Ages Eligible for Study: Child (0-17)Adult (18-64)Older Adult (65+)
Sexes Eligible for Study: All
Accepts Healthy Volunteers: No
Eligibility Criteria: 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

How the study is designed and how its participant groups are organized.

The people to reach with questions about this study or how to join it.

No central contacts

There are no central contacts for this study.

Where the study is run and whether each site is currently recruiting.

No locations

There are no locations for this study.

The organizations and people involved in this study.

Other registered studies that closely resemble this one.