Cargando…

Bereaved parents’ perspectives on their child’s end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study

BACKGROUND: Paediatric Palliative Care (PPC) focuses on ensuring the best possible quality of life for the child and his/her family by extending beyond the physical domain into psychosocial and spiritual wellbeing. A deep understanding of what is important to parents is crucial in guiding the furthe...

Descripción completa

Detalles Bibliográficos
Autores principales: Zimmermann, Karin, Marfurt-Russenberger, Katrin, Cignacco, Eva, Bergstraesser, Eva
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9066872/
https://www.ncbi.nlm.nih.gov/pubmed/35509046
http://dx.doi.org/10.1186/s12904-022-00957-w
_version_ 1784699886708457472
author Zimmermann, Karin
Marfurt-Russenberger, Katrin
Cignacco, Eva
Bergstraesser, Eva
author_facet Zimmermann, Karin
Marfurt-Russenberger, Katrin
Cignacco, Eva
Bergstraesser, Eva
author_sort Zimmermann, Karin
collection PubMed
description BACKGROUND: Paediatric Palliative Care (PPC) focuses on ensuring the best possible quality of life for the child and his/her family by extending beyond the physical domain into psychosocial and spiritual wellbeing. A deep understanding of what is important to parents is crucial in guiding the further evaluation and improvement of PPC and end-of-life (EOL) care services. Much can be learned from specific positive and negative experiences of bereaved parents with the EOL care of their child. This report builds upon a questionnaire survey as part of the national Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study. METHODS: One part of the PELICAN study was set up to assess and explore the parental perspectives on their child’s EOL care. Interview data were used to explain the extremely positive and negative results of a quantitative survey in an explanatory sequential mixed-methods approach. Data integration occurred at different points: during sampling of the interview participants, when designing the interview guide and during analysis. A narrative approach was applied to combine the qualitative results reported here with the already published quantitative survey results. RESULTS: Eighteen mothers (60%) and twelve fathers (40%) participated in 20 family interviews. All parents reported having both positive and negative experiences during their child’s illness and EOL, which was characterised by many ups and downs. The families transitioned through phases with a prospect of a cure for some children as well as setbacks and changing health status of the child which influenced prognosis, leading to the challenge of making extremely difficult decisions. Severely negative experiences still haunted and bothered the parents at the time when the interview took place. CONCLUSIONS: A deep understanding of the perspectives and needs of parents going through the devastating event of losing a child is important and a prerequisite to providing compassionate care. This complex care needs to recognise and respond to the suffering not only of the child but of the parents and the whole family. Communication and shared decision-making remain pivotal, as do still improvable elements of care that should build on trustful relationships between families and healthcare professionals.
format Online
Article
Text
id pubmed-9066872
institution National Center for Biotechnology Information
language English
publishDate 2022
publisher BioMed Central
record_format MEDLINE/PubMed
spelling pubmed-90668722022-05-04 Bereaved parents’ perspectives on their child’s end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study Zimmermann, Karin Marfurt-Russenberger, Katrin Cignacco, Eva Bergstraesser, Eva BMC Palliat Care Research BACKGROUND: Paediatric Palliative Care (PPC) focuses on ensuring the best possible quality of life for the child and his/her family by extending beyond the physical domain into psychosocial and spiritual wellbeing. A deep understanding of what is important to parents is crucial in guiding the further evaluation and improvement of PPC and end-of-life (EOL) care services. Much can be learned from specific positive and negative experiences of bereaved parents with the EOL care of their child. This report builds upon a questionnaire survey as part of the national Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study. METHODS: One part of the PELICAN study was set up to assess and explore the parental perspectives on their child’s EOL care. Interview data were used to explain the extremely positive and negative results of a quantitative survey in an explanatory sequential mixed-methods approach. Data integration occurred at different points: during sampling of the interview participants, when designing the interview guide and during analysis. A narrative approach was applied to combine the qualitative results reported here with the already published quantitative survey results. RESULTS: Eighteen mothers (60%) and twelve fathers (40%) participated in 20 family interviews. All parents reported having both positive and negative experiences during their child’s illness and EOL, which was characterised by many ups and downs. The families transitioned through phases with a prospect of a cure for some children as well as setbacks and changing health status of the child which influenced prognosis, leading to the challenge of making extremely difficult decisions. Severely negative experiences still haunted and bothered the parents at the time when the interview took place. CONCLUSIONS: A deep understanding of the perspectives and needs of parents going through the devastating event of losing a child is important and a prerequisite to providing compassionate care. This complex care needs to recognise and respond to the suffering not only of the child but of the parents and the whole family. Communication and shared decision-making remain pivotal, as do still improvable elements of care that should build on trustful relationships between families and healthcare professionals. BioMed Central 2022-05-04 /pmc/articles/PMC9066872/ /pubmed/35509046 http://dx.doi.org/10.1186/s12904-022-00957-w Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Zimmermann, Karin
Marfurt-Russenberger, Katrin
Cignacco, Eva
Bergstraesser, Eva
Bereaved parents’ perspectives on their child’s end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study
title Bereaved parents’ perspectives on their child’s end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study
title_full Bereaved parents’ perspectives on their child’s end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study
title_fullStr Bereaved parents’ perspectives on their child’s end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study
title_full_unstemmed Bereaved parents’ perspectives on their child’s end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study
title_short Bereaved parents’ perspectives on their child’s end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study
title_sort bereaved parents’ perspectives on their child’s end-of-life care: connecting a self-report questionnaire and interview data from the nationwide paediatric end-of-life care needs in switzerland (pelican) study
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9066872/
https://www.ncbi.nlm.nih.gov/pubmed/35509046
http://dx.doi.org/10.1186/s12904-022-00957-w
work_keys_str_mv AT zimmermannkarin bereavedparentsperspectivesontheirchildsendoflifecareconnectingaselfreportquestionnaireandinterviewdatafromthenationwidepaediatricendoflifecareneedsinswitzerlandpelicanstudy
AT marfurtrussenbergerkatrin bereavedparentsperspectivesontheirchildsendoflifecareconnectingaselfreportquestionnaireandinterviewdatafromthenationwidepaediatricendoflifecareneedsinswitzerlandpelicanstudy
AT cignaccoeva bereavedparentsperspectivesontheirchildsendoflifecareconnectingaselfreportquestionnaireandinterviewdatafromthenationwidepaediatricendoflifecareneedsinswitzerlandpelicanstudy
AT bergstraessereva bereavedparentsperspectivesontheirchildsendoflifecareconnectingaselfreportquestionnaireandinterviewdatafromthenationwidepaediatricendoflifecareneedsinswitzerlandpelicanstudy