Photo-narratives as a Legacy Intervention for Children With Medical Complexity and Their Families
试验速览
- 阶段
- 2 期
- 状态
- 尚未招募
- 入组人数
- 40
- 主要终点
- Feasibility
研究概览
简要总结
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.
研究设计
- 研究类型
- Interventional
- 分配方式
- Randomized
- 干预模型
- Parallel
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 3 Months 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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
排除标准
- •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
结局指标
主要结局
Feasibility
时间窗: 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
时间窗: 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
次要结局
- Meaning and purpose(1- and 3-months post-enrollment)
- Hope(1- and 3-months post-enrollment)
- Therapeutic alliance(1- and 3-months post-enrollment)
研究者
Jori Bogetz
Associate Professor
Seattle Children's Hospital