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Parental experiences with a hospital-based bereavement program following the loss of a child to cancer

Published online by Cambridge University Press:  07 November 2016

Julie Berrett-Abebe ,
Elyse Levin-Russman ,
Marie Elena Gioiella  and
Jeffrey M. Adams
Julie Berrett-Abebe*
Affiliation:
Simmons College School of Social Work, Boston, Massachusetts Massachusetts General Hospital, Boston, Massachusetts
Elyse Levin-Russman
Affiliation:
Massachusetts General Hospital, Boston, Massachusetts
Marie Elena Gioiella
Affiliation:
Social Service Department, Massachusetts General Hospital, Boston, Massachusetts
Jeffrey M. Adams
Affiliation:
Workforce Outcomes Research and Leadership Development (WORLD-Institute) founded by Arizona Sate University College of Nursing and Health Innovation, Phoenix, AZ Brigham and Women's Hospital, Dana-Farber Cancer Institute, Boston, Massachusetts
*
Address correspondence and reprint requests to: Julie Berrett-Abebe, Simmons College School of Social Work, 300 The Fenway, Boston, Massachusetts 02115. E-mail: berrett@simmons.edu.
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Abstract

Objective:

The death of a child from cancer is an intense and life-changing loss for a parent. Guided by the principles of patient- and family-centered care, hospital-based caregivers developed a program to provide bereavement support for parents through phone calls and mailings. The aim of the present qualitative phenomenological study was to understand how parents experienced participating in this bereavement program.

Method:

A total of eight parents from six families participated in a focus-group evaluation of the two-year hospital-based bereavement program. Two social work clinicians/researchers independently analyzed the transcript of the focus group to define themes.

Results:

Four themes were identified: (1) lived experience of grief, (2) importance of relationships with the hospital-based team, (3) bereavement support from hospital-based providers, and (4) extending bereavement care.

Significance of Results:

Participants indicated the value of ongoing communication and connection with members of the healthcare team, who were often central to a family's life for years during their child's cancer treatment. Parents also provided suggestions for extending bereavement support through continued contact with providers and informal annual gatherings, as well as through a peer (parent-to-parent) support program.

Keywords

BereavementPediatric oncologyHospital-based bereavement programQualitative researchPatient- and family-centered care
Type
Original Articles
Information
Palliative & Supportive Care , Volume 15 , Issue 3 , June 2017 , pp. 348 - 358
Copyright
Copyright © Cambridge University Press 2016 

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