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.
Highlights
Children with life-limiting or life-threatening diseases (LLD/ LTD; Box 1) are increasingly cared for at home
This study aims to provide insight into the most prominent experiences of parents caring for a child with a malignant or non-malignant LLD/LTD at home and to identify the main coping strategies they adopt to allow themselves to continue with their daily lives
Despite differences in disease trajectories, the experiences and coping strategies described below were quite similar for parents of both the MD and NMD groups
Summary
Children with life-limiting or life-threatening diseases (LLD/ LTD; Box 1) are increasingly cared for at home. The period in which paediatric palliative care (PPC) needs to be provided by the parents is becoming increasingly longer due to technical and medical improvements [9, 17, 25, 32, 47]. In addition to routine childcare, caregiving includes a range of demanding emotional, technical and nursing tasks [13, 20, 42, 48, 53, 54]. Life-limiting disease: conditions for which are that there is no reasonable hope of a cure and from which children or young people will die. Life-threatening disease: conditions for which are that curative treatment can be feasible but can fail
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