%0 Journal Article
%T The Long Road to Farewell: The Needs of Families With Dying Children
%A Angela S. Lieber
%A Cybele Blood
%A Joanne Cacciatore
%A Kara Thieleman
%A Rachel Goldman
%J OMEGA
%@ 1541-3764
%D 2019
%R 10.1177/0030222817697418
%X Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their childĄ¯s death. However, there is a dearth of research on these familiesĄ¯ 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 childĄ¯s terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participantsĄ¯ 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
%K pediatric palliative care
%K bereavement
%K trauma
%K cancer
%K bereaved parents
%U https://journals.sagepub.com/doi/full/10.1177/0030222817697418