Preparing for palliative caregiving as a transition in the awareness of death: family carer experiences

Abstract

Aim: The aim of this study was to explore family caregivers´ experiences from partners' stories about preparing for caregiving.

Methods: The study had a descriptive and interpretive design using qualitative interviews and qualitative content analysis.

Results: Preparing for caregiving was described in the two sub-themes: living in uncertainty, focusing on the present and preparing for the future; and preparing for caregiving while transitioning to new roles. One overarching theme 'preparing for caregiving in awareness of death' was seen as a common thread throughout the results. Preparing meant dealing with changes in life, living in uncertainty and transitioning to new roles.

Conclusion: Family (partner) caregivers continuously tried to prepare in different ways in response to their partners' illness. Preparing for caregiving meant to willingly or unwillingly prepare for the dying and death of their partner and awareness about this was always present in some way, influencing the whole experience.

Keywords: Caregiving; Family caregivers; Hospice care; Palliative care; Spouse caregivers.