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First published online March 8, 2017

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


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.

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Joanne Cacciatore, PhD, is an associate professor at Arizona State University whose research focuses on traumatic grief, particularly the death of a child.
Kara Thieleman, is a doctoral candidate with an interest in traumatic grief at Arizona State University.
Angela S. Lieber, is a doctoral student in the College of Social Work at Florida State University.
Cybele Blood, LCSW, is a psychotherapist at Highland Ridge Hospital in Midvale, Utah and has a keen interest in grief and bereavement.
Rachel Goldman, is a PhD student in clinical psychology with a passion for working with terminally or critically ill children and helping families deal with grief.

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Published In

Article first published online: March 8, 2017
Issue published: March 2019


  1. pediatric palliative care
  2. bereavement
  3. trauma
  4. cancer
  5. bereaved parents

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© The Author(s) 2017.
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Published online: March 8, 2017
Issue published: March 2019
PubMed: 29284313



Joanne Cacciatore
Arizona State University, Phoenix, AZ, USA
Kara Thieleman
Arizona State University, Phoenix, AZ, USA
Angela S. Lieber
College of Social Work, Florida State University, Tallahassee, FL, USA
Highland Ridge Hospital, Midvale, UT, USA
Cybele Blood
Highland Ridge Hospital, Midvale, UT, USA
Rachel Goldman
Ferkauf Graduate School of Psychology, Yeshiva University, New York, NY, USA


Joanne Cacciatore, Arizona State University, Phoenix, AZ, USA. Email: [email protected]

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This article was published in OMEGA - Journal of Death and Dying.


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