Legacy Photo-narrative Study

Children with medical complexity (CMC) live full meaningful lives that are often short.CMC and their families experience substantial distress, poor mental health, and lowemotional well‐being. Existing research and our prior studies suggest that legacy,defined as the summation of qualities and experiences that form the child's enduringpresence, can be a resource for actionable appraisal of and coping with stressful lifeexperiences. Photo‐narratives are a novel intervention that facilitate family sharing ofimages to tell stories about everyday experiences related to their child'squality‐of‐life and personhood. In our prior studies, families reported thatphoto‐narratives were a simple, easy way to meaningfully connect and had the potential tobe an important part of their child's legacy. What remains poorly understood, however, ishow photo‐narratives might impact family‐centered outcomes. This study aims to andevaluate the feasibility, acceptability, and potential impact of photo‐narratives in apilot randomized controlled trial.