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The social and spiritual dimensions of parental experiences on end-of-life care of their child with cancer: A narrative review

Published online by Cambridge University Press:  20 January 2022

Maria Katharina Job Open the ORCID record for Maria Katharina Job [Opens in a new window] ,
Petra Schumacher ,
Gerhard Müller  and
Christiane Kreyer Open the ORCID record for Christiane Kreyer [Opens in a new window]
Maria Katharina Job*
Affiliation:
Hospital of St. John of God in Vienna, Johannes-von-Gott Platz 1, A-1020 Vienna, Austria
Petra Schumacher
Affiliation:
Fachhochschule Krems – University of Applied Sciences Krems, Department of Health Sciences, Institute of Nursing Science, Am Campus Krems, A-3500 Krems, Austria
Gerhard Müller
Affiliation:
UMIT - Private University for Health Sciences, Medical Informatics and Technology, Department of Nursing Science and Gerontology, Institute of Nursing Science, Eduard Wallnoefer-Zentrum 1, A-6060 Hall in Tyrol, Austria
Christiane Kreyer
Affiliation:
UMIT - Private University for Health Sciences, Medical Informatics and Technology, Department of Nursing Science and Gerontology, Institute of Nursing Science, Eduard Wallnoefer-Zentrum 1, A-6060 Hall in Tyrol, Austria
*
Author for correspondence: Maria Katharina Job, Hospital of St. John of God in Vienna, Johannes-von-Gott Platz 1, A-1020 Vienna, Austria. E-mail: maria.job@aon.at
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Abstract

Objective

Having a child with cancer is a burdensome experience for parents. Nurses need to better understand beliefs, hopes, and values of parents to holistically support them, which may have an impact on grief and depression. Thus, the aim of this paper was to highlight the social and spiritual dimensions of parental experiences on end-of-life care of their child with cancer.

Method

A narrative literature review was conducted by systematically searching databases (CINAHL Complete, Academic Search Elite, MEDLINE) for relevant literature. The contents of included studies were critically appraised regarding their methodological quality.

Results

Eleven studies were included. In terms of the social dimension, three categories emerged that are important for parents: Being a Parent, Being in Relationship with the Child, and Being in Relationship with Health Professionals. Parents tried to maintain normality and joy for their child, but also kept control over the situation. They wanted to protect their child from suffering but also felt the need to talk to them about dying. Parents had ambivalent experiences with helpful but also burdensome staff. The spiritual dimension comprised two main categories, Hope and Faith and a Unique Bond. Hope was found to be an important source of strength, while Faith was only mentioned by some parents. For parents the emotional connection with their child constituted a source of meaning as well as a foundation, on which they based their decisions on.

Significance of results

A therapeutic relationship and a supportive environment can be established by healthcare professionals by noticing, encouraging the unique bond between parents and their children, as well as by reflecting and addressing the parents’ challenging situation.

Keywords

CancerChildEnd of lifeParentsSocial and spiritual dimensions
Type
Review Article
Information
Palliative & Supportive Care , Volume 21 , Issue 2 , April 2023 , pp. 308 - 319
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Copyright
© The Author(s), 2022. Published by Cambridge University Press

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