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Personalized and yet standardized: An informed approach to the integration of bereavement care in pediatric oncology settings

Published online by Cambridge University Press:  01 February 2018

Lori Wiener*
Affiliation:
National Institutes of Health, National Cancer Institute, Center for Cancer Research, Bethesda, MD
Abby R. Rosenberg
Affiliation:
Seattle Children's Research Institute, Center for Clinical and Translational Research and Treuman Katz Centre for Pediatric Bioethics, Seattle, WA
Wendy G. Lichtenthal
Affiliation:
Memorial Sloan Kettering Cancer Center, Department of Psychiatry & Behavioral Sciences, New York, New York
Julia Tager
Affiliation:
National Institutes of Health, National Cancer Institute, Center for Cancer Research, Bethesda, MD
Meaghann S. Weaver
Affiliation:
Children's Hospital and Medical Center, Hand in Hand/Pediatric Palliative Care, Pediatric Oncology, Omaha, NE
*
Author for correspondence: Lori Wiener, Ph.D., Center for Cancer Research, National Cancer Institute, Building 10- Hatfield CRC Room 1-6466, Bethesda, MD 20892. E-mail: wienerl@mail.nih.gov

Abstract

Objective

The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support. This study assessed how this standard is being implemented in current healthcare and palliative care practices, as well as barriers to its implementation.

Method

Experts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of care.

Result

The majority of participants (N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child's death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child's death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool.

Significance of results

Lack of routine assessment of bereavement needs, inconsistent duration of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.

Type
Original Article
Copyright
Copyright © Cambridge University Press 2018 

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