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Pensar Enfermagem / v.28 n.sup / October 2024
DOI: 10.71861/pensarenf.v28iSup.384
Abstract
Introduction
Parents who accompany their children with a complex chronic illness until their death
experience a unique situation, with vulnerabilities and lived individually, with specific needs
and enormous suffering.1 This study sought to answer the research question "What is the
lived experience of parents who accompanied their children with a complex chronic illness
until their death, in a paediatric palliative care setting?"
Objective
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.
Methods
Qualitative methodology, descriptive phenomenological orientation. The participants were
selected intentionally, with the support of an in-hospital paediatric palliative care team.
Phenomenological interviews were conducted with nine mothers. The process of analysing
the data was conducted using the procedural stages of van Kaam's method modified by
Moustakas.2
Results
Understanding the essential structure of the phenomenon is revealed in a composite
description that involves three essential themes: "Facing up to 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 communication. For mothers, being
reborn from the ashes and nurturing the hope of gaining the ability to rebuild themselves
by refocusing on attitudes and concerns linked to promoting self-care3 is a daily challenge.
Conclusion
The mothers participating in this study attribute a transformative meaning to their lived
experience of accompanying their children with a complex chronic illness until their death.
Through this study, nurses will be able to access the lived experience of these mothers and
improve their intervention throughout the process of their children's illness, as well as in
their bereavement process. It will also contribute to research and teaching in palliative care
in the area of child and paediatric health
Keywords
Parents; Children; Palliative Care; Phenomenology; Nursing.
References
1. Correia, ME., Botelho, MA, Magão, TM. The experience of parents accompanying their
children in pediatric palliative care: Scoping review. Ver Enf Ref. [Internet] 2022 Jan [cited
2022 jan 2]; 6(1), e21112. Available from: https://doi.org/10.12707/RV21112
2. Galinha-de-Sá FLFR, Velez MAMRBA. Van Kaam’s phenomenology: theoretical-
methodological contributions to nursing research. Rev Gaúcha Enf.
[Internet]2022Dez[cited 2023 jun 10];(43),e20220135. Available from:
https://doi.org/10.1590/1983-1447.2022.20220135.pt
3. Silva IJ, Oliveira MFV, Silva SED, Polaro SHI, Radünz V, Santos EKA, et al. Care, self-
care and caring for yourself: a paradigmatic under standing thought for nursingcare.
RevEscEnferm USP [Internet] 2009[cited 2023 set 1];43(3): 697-703. Available from:
https://doi.org/10.1590/S0080-62342009000300028
Maria Eduarda Correia1
orcid.org/0000-0001-8322-4437
Maria Teresa Magão2
orcid.org/0000-0003-0294-3590
Maria Antónia Miranda Rebelo Botelho Alfaro
Velez3
orcid.org/0000-0001-7356-2053
1Escola Superior de Saúde - Instituto Politécnico de
Portalegre, Portalegre. Centro de Investigação,
Inovação e Desenvolvimento em Enfermagem de
Lisboa (CIDNUR), Lisboa, Portugal.
2 Escola Superior de Enfermagem de Lisboa,
Lisboa. Centro de Investigação, Inovação e
Desenvolvimento em Enfermagem de Lisboa
(CIDNUR), Lisboa, Portugal.
3 Escola Superior de Enfermagem de Lisboa,
Lisboa, Portugal.
Corresponding author:
Maria Eduarda Correia
E-mail: eduarda.correia@ipportalegre.pt
Accompanying a sick son until their death: starting
again without ever forgetting
