Supportive and palliative care needs of families of children who die from cancer: an Australian study

Objective: To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their palliative and supportive care needs. Design: A qualitative study with s...

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Main Authors: Monterosso, Leanne, Kristjanson, Linda
Format: Journal Article
Published: Sage Science Press (UK) 2008
Subjects:
Online Access:http://hdl.handle.net/20.500.11937/40811
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author Monterosso, Leanne
Kristjanson, Linda
author_facet Monterosso, Leanne
Kristjanson, Linda
author_sort Monterosso, Leanne
building Curtin Institutional Repository
collection Online Access
description Objective: To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their palliative and supportive care needs. Design: A qualitative study with semi-structured interviews. Participants: 24 parents from Perth (n = 10), Melbourne (n = 5), Brisbane (n = 5) and Sydney (n = 4). Setting: Five Australian tertiary paediatric oncology centres. Results: Parents whose children died from cancer live within a context of chronic uncertainty and apprehension. Parents construed palliative care negatively as an independent process at the end of their children's lives rather than as a component of a wider and continuous process where children and their families are offered both curative and palliative care throughout the cancer trajectory. The concept of palliative care was perceived to be misunderstood by key health professionals involved in the care of the child and family. The importance and therapeutic value of authentic and honest relationships between health professionals and parents, and between health professionals and children were highlighted as a critical aspect of care. Also highlighted was the need to include children and adolescents in decision making, and for the delivery of compassionate end-of-life care that is sensitive to the developmental needs of the children, their parents and siblings. Conclusions: There is a need for health professionals to better understand the concept of palliative care, and factors that contribute to honest, open, authentic and therapeutic relationships of those concerned in the care of the dying child. This will facilitate a better understanding by both parents and their children with cancer, and acceptance of the integration of palliative and supportive care in routine cancer care.
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spelling curtin-20.500.11937-408112017-09-13T15:57:39Z Supportive and palliative care needs of families of children who die from cancer: an Australian study Monterosso, Leanne Kristjanson, Linda supportive care children palliative care families Cancer Objective: To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their palliative and supportive care needs. Design: A qualitative study with semi-structured interviews. Participants: 24 parents from Perth (n = 10), Melbourne (n = 5), Brisbane (n = 5) and Sydney (n = 4). Setting: Five Australian tertiary paediatric oncology centres. Results: Parents whose children died from cancer live within a context of chronic uncertainty and apprehension. Parents construed palliative care negatively as an independent process at the end of their children's lives rather than as a component of a wider and continuous process where children and their families are offered both curative and palliative care throughout the cancer trajectory. The concept of palliative care was perceived to be misunderstood by key health professionals involved in the care of the child and family. The importance and therapeutic value of authentic and honest relationships between health professionals and parents, and between health professionals and children were highlighted as a critical aspect of care. Also highlighted was the need to include children and adolescents in decision making, and for the delivery of compassionate end-of-life care that is sensitive to the developmental needs of the children, their parents and siblings. Conclusions: There is a need for health professionals to better understand the concept of palliative care, and factors that contribute to honest, open, authentic and therapeutic relationships of those concerned in the care of the dying child. This will facilitate a better understanding by both parents and their children with cancer, and acceptance of the integration of palliative and supportive care in routine cancer care. 2008 Journal Article http://hdl.handle.net/20.500.11937/40811 10.1177/0269216307084608 Sage Science Press (UK) restricted
spellingShingle supportive care
children
palliative care
families
Cancer
Monterosso, Leanne
Kristjanson, Linda
Supportive and palliative care needs of families of children who die from cancer: an Australian study
title Supportive and palliative care needs of families of children who die from cancer: an Australian study
title_full Supportive and palliative care needs of families of children who die from cancer: an Australian study
title_fullStr Supportive and palliative care needs of families of children who die from cancer: an Australian study
title_full_unstemmed Supportive and palliative care needs of families of children who die from cancer: an Australian study
title_short Supportive and palliative care needs of families of children who die from cancer: an Australian study
title_sort supportive and palliative care needs of families of children who die from cancer: an australian study
topic supportive care
children
palliative care
families
Cancer
url http://hdl.handle.net/20.500.11937/40811