Family caregivers at the crossroads - considerations, values and the decision to involve volunteers in end-of-life home care: A qualitative study

Abstract

Background

Family caregiving is often essential in fulfilling a patient's wish to die at home. While relatives may sometimes experience this role as an obligation, they frequently also find it rewarding. However, caregiving can be burdensome, particularly in the final stages of life, when care demands intensify and sometimes lead to unplanned hospital admissions. Volunteers can provide crucial support to help family caregivers sustain their caregiving efforts.

Objective

This Dutch study examines the considerations and underlying values that shape caregivers' decisions to accept volunteer assistance.

Method

A phenomenological research approach was conducted involving 22 interviews with family caregivers (partners and children) of deceased individuals who had received volunteer-supported end-of-life care at home. Purposive sampling was used for recruitment (June – September 2023) to ensure diversity. Inclusion criteria were close involvement during the final phase of life of a loved one who had passed away at home within the past year. The interviews were thematically analyzed in Atlas.ti. Subsequently the data were synthesized into composite narratives to contextualize caregivers' voices. This enhances the accessibility of findings for healthcare professionals, particularly community nurses and general practitioners, who often introduce the option of volunteer involvement.

Results

Family caregivers' considerations regarding volunteer support are complex and multifaceted. Their commitment to care is strong, and accepting support from volunteers was regularly experienced as failing. This perception is compounded by uncertainty about the duration of care and the increasingly confined living space, which deepens the bond between family caregiver and relative. The emotional and physical burden grows, while caregivers often hesitate to act without the patient's approval and struggle to acknowledge their own limits. The desire to spend as much time as possible with a relative, combined with the wish to be present at the moment of their passing, makes the decision-making process regarding the acceptance of a volunteer more complex. Healthcare professionals play a pivotal role in facilitating discussions about volunteer support.

Conclusions

This study highlights the complex considerations individuals face in the process of deciding to accept volunteer support during a relative's final stages of life. Driven by an intense sense of duty and the value of shared time, caregivers often prioritize caregiving over their own needs, which leads to fatigue and reluctance to seek external help. Introducing volunteer support, while beneficial, can evoke feelings of inadequacy, underscoring the need for healthcare professionals to approach these situations with sensitivity to emotional and familial dynamics.