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

Joanne Cacciatore, Kara Thieleman, Angela S. Lieber, Cybele Blood, Rachel Goldman

Research output: Contribution to journalArticlepeer-review

12 Scopus citations


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. 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. 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. Specifics and implications for practice are explored.

Original languageEnglish (US)
Pages (from-to)404-420
Number of pages17
JournalOmega (United States)
Issue number4
StatePublished - Mar 1 2019


  • bereaved parents
  • bereavement
  • cancer
  • pediatric palliative care
  • trauma

ASJC Scopus subject areas

  • Health(social science)
  • Critical Care and Intensive Care Medicine
  • Life-span and Life-course Studies


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