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Open Access 01-07-2019 | Care | Original Article

Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study

Authors: Lisa M. Verberne, Marijke C. Kars, Antoinette Y. N. Schouten-van Meeteren, Esther M. M. van den Bergh, Diederik K. Bosman, Derk A. Colenbrander, Martha A. Grootenhuis, Johannes J. M. van Delden

Published in: European Journal of Pediatrics | Issue 7/2019

Abstract

Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals’ support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s).

Conclusion: Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies.

What is Known:

• In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child’s symptoms, a life worth living and a family balance.

What is New:

• Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship.

• Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes.

• To provide tailored support, professionals need to understand parents’ perceptions, relationship with their child and coping strategies.

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Title: Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study
Authors: Lisa M. Verberne
Marijke C. Kars
Antoinette Y. N. Schouten-van Meeteren
Esther M. M. van den Bergh
Diederik K. Bosman
Derk A. Colenbrander
Martha A. Grootenhuis
Johannes J. M. van Delden
Publication date: 01-07-2019
Publisher: Springer Berlin Heidelberg
Keyword: Care
Published in: European Journal of Pediatrics / Issue 7/2019
Print ISSN: 0340-6199
Electronic ISSN: 1432-1076
DOI: https://doi.org/10.1007/s00431-019-03393-w

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Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study

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