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

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.
Source: European Journal of Pediatrics - Category: Pediatrics Source Type: research