The Long Road to Farewell: The Needs of Families With Dying Children

Background: Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with health-care providers. Methods: This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child's terminal illness, from diagnosis to death. Findings: The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants' perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence , and thus compounded the experience of loss. Discussion: Specifics and implications for practice are explored.