Wishes, conflicts, and support needs of informal caregivers of patients in the palliative phase: A qualitative study

TL;DR

This study explores the wishes and challenges of informal caregivers for palliative care patients and identifies ways to support them.

Contribution

The study provides new insights into the specific wishes and conflicts of informal caregivers in palliative care.

Findings

Informal caregivers wish to maintain normal life and spend quality time with their family.

Caregivers face conflicts balancing caregiving with personal activities and role shifts.

Practical and emotional support from professionals and digital tools can ease caregiving burdens.

Abstract

This study explored wishes, conflicts, beneficial, and wished support of informal caregivers (ICGs) providing care to a palliative ill close other. We interviewed five current and 15 bereaved ICGs (25–75 years), and used thematic analyses. ICGs wished to continue life as normal as possible, spend time together and with their family, comfort their close other, and continue own activities. Caregivers experienced conflicts in balancing caregiving and own activities, quality time with each other and social contacts, the level of professional or informal support preferred, and in their shifting role from partner/child to nurse. ICGs experienced practical support, being heard, and good professional support as helpful. An overview of available support options, one contact for administrative issues, and an environment that pays attention to ICGs’ wellbeing could make caregiving easier. Formal carers and digital tools can support caregivers in balancing wishes and boundaries with the requests of caregiving to decrease conflicts.

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