Mothers Who Accompany a Child to Their Death: Starting Again Without Ever Forgetting

<b>Background/Objectives:</b> Parents who accompany their children with a complex chronic illness until their death experience a unique situation, with vulnerabilities, specific needs and enormous suffering. The aim of the study was to describe the lived experience of parents who accompa...

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Main Authors: Maria Eduarda Correia, Maria Teresa Magão, Maria Antónia Rebelo Botelho
Format: Article
Language:English
Published: MDPI AG 2025-01-01
Series:Nursing Reports
Subjects:
Online Access:https://www.mdpi.com/2039-4403/15/1/15
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author Maria Eduarda Correia
Maria Teresa Magão
Maria Antónia Rebelo Botelho
author_facet Maria Eduarda Correia
Maria Teresa Magão
Maria Antónia Rebelo Botelho
author_sort Maria Eduarda Correia
collection DOAJ
description <b>Background/Objectives:</b> Parents who accompany their children with a complex chronic illness until their death experience a unique situation, with vulnerabilities, specific needs and enormous suffering. The aim of the study was to describe the lived experience of parents who accompanied their children with a complex chronic illness until their death, in a paediatric palliative care setting. <b>Methods</b>: We opted for a qualitative methodology, with a descriptive phenomenological orientation. Phenomenological interviews were carried out with nine intentionally selected mothers, with the support of a paediatric palliative care hospital team. The procedural phases of van Kaam’s method, modified by Moustakas, were used to analyse the data. <b>Results:</b> An understanding of the essential structure of the phenomenon is revealed in a description made up of three essential themes: ‘facing the harbinger of illness’; ‘living (together) with a sick child’; and ‘starting again without ever forgetting: living with an absent child’, the latter being the subject of this article. <b>Conclusions:</b> The participants attribute a self-transforming meaning to their lived experience of accompanying their children. Nurses will be able to access the lived experience of these mothers and improve their intervention in the process of their children’s illness, as well as in their bereavement process. There are also contributions to research and teaching in palliative care in the area of child and paediatric health.
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spelling doaj-art-6352cdaf91ee4d8394a1c83dcc5245422025-01-24T13:44:29ZengMDPI AGNursing Reports2039-439X2039-44032025-01-011511510.3390/nursrep15010015Mothers Who Accompany a Child to Their Death: Starting Again Without Ever ForgettingMaria Eduarda Correia0Maria Teresa Magão1Maria Antónia Rebelo Botelho2Department of Nursing, Higher School of Health, Polytechnic Institute of Portalegre, 7300-555 Portalegre, PortugalNursing Research, Innovation and Development Centre of Lisbon (CIDNUR), 1990-096 Lisbon, PortugalNursing School of Lisbon, 1990-096 Lisbon, Portugal<b>Background/Objectives:</b> Parents who accompany their children with a complex chronic illness until their death experience a unique situation, with vulnerabilities, specific needs and enormous suffering. The aim of the study was to describe the lived experience of parents who accompanied their children with a complex chronic illness until their death, in a paediatric palliative care setting. <b>Methods</b>: We opted for a qualitative methodology, with a descriptive phenomenological orientation. Phenomenological interviews were carried out with nine intentionally selected mothers, with the support of a paediatric palliative care hospital team. The procedural phases of van Kaam’s method, modified by Moustakas, were used to analyse the data. <b>Results:</b> An understanding of the essential structure of the phenomenon is revealed in a description made up of three essential themes: ‘facing the harbinger of illness’; ‘living (together) with a sick child’; and ‘starting again without ever forgetting: living with an absent child’, the latter being the subject of this article. <b>Conclusions:</b> The participants attribute a self-transforming meaning to their lived experience of accompanying their children. Nurses will be able to access the lived experience of these mothers and improve their intervention in the process of their children’s illness, as well as in their bereavement process. There are also contributions to research and teaching in palliative care in the area of child and paediatric health.https://www.mdpi.com/2039-4403/15/1/15parentschildrenpalliative carephenomenologynursing
spellingShingle Maria Eduarda Correia
Maria Teresa Magão
Maria Antónia Rebelo Botelho
Mothers Who Accompany a Child to Their Death: Starting Again Without Ever Forgetting
Nursing Reports
parents
children
palliative care
phenomenology
nursing
title Mothers Who Accompany a Child to Their Death: Starting Again Without Ever Forgetting
title_full Mothers Who Accompany a Child to Their Death: Starting Again Without Ever Forgetting
title_fullStr Mothers Who Accompany a Child to Their Death: Starting Again Without Ever Forgetting
title_full_unstemmed Mothers Who Accompany a Child to Their Death: Starting Again Without Ever Forgetting
title_short Mothers Who Accompany a Child to Their Death: Starting Again Without Ever Forgetting
title_sort mothers who accompany a child to their death starting again without ever forgetting
topic parents
children
palliative care
phenomenology
nursing
url https://www.mdpi.com/2039-4403/15/1/15
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AT mariaantoniarebelobotelho motherswhoaccompanyachildtotheirdeathstartingagainwithouteverforgetting