“It Doesn’t Have to Be Big Things”: The legacy perceptions of parents/caregivers of medically complex children

Advancements in life-sustaining technologies have extended the lives of children with medical complexities, increasing demand for substantial healthcare services. Caring for these children requires significant caregiver time and energy, affecting their well-being. These experiences highlight a critical need for psychosocial interventions-like legacy-building-to foster adaptive coping, facilitate meaning making, and optimize outcomes for this population. This study explores how parents/caregivers of medically complex children perceive and experience the concept of legacy. Thirty-one parents/caregivers participated in semi-structured interviews, which were analyzed using inductive coding. Three themes emerged: (1) legacy is both what you leave behind and what you live right now, (2) legacy inspires change, and (3) legacy is shaped by healthcare experiences. Findings highlight the need for inclusive, adaptable legacy-building practices that address families' unique needs and enhance psychosocial support for this population.