Caregivers’ Perceptions of the Impact of Palliative Care: A Qualitative Study

TL;DR

This study explores how palliative care impacts caregivers, highlighting both benefits like home support and challenges like late referrals and resource shortages.

Contribution

The study provides new qualitative insights into caregivers' lived experiences with community-based palliative care, emphasizing unmet needs and structural limitations.

Findings

Caregivers valued home visits and accessible support from palliative care teams but faced fatigue and emotional strain.

Late referrals and resource shortages were common issues affecting caregivers' ability to manage their roles effectively.

Unmet needs included respite care, social support, and financial security, which are critical for sustainable caregiving.

Abstract

Introduction: Population aging and the rising prevalence of multimorbidity have contributed to increased levels of dependency, placing informal caregivers at the forefront of home-based care delivery. Although palliative care (PC) aims to support both patients and their families, evidence regarding caregivers’ own perceptions and experiences of this role remains limited. Furthermore, the extent to which community PC teams shape caregivers’ lived experience is still insufficiently understood.

Methods: This qualitative phenomenological study involved conducting four semi-structured interviews with caregivers who were supported by a community PC team. Data were collected at home, audio-recorded, and fully transcribed. Content analysis was performed using pre-defined themes (Referral Process, Caregiving Experience, Expectations, Impact of PC on Caregiving Experience, Expectations vs. Reality, and Suggestions for Improvement). The saturation point was determined by consensus among the research team.

Results: All participants were women who took on most of the caregiving tasks, such as hygiene, feeding, managing medication, and accompanying patients to medical appointments. They reported fatigue, poorer sleep quality, and emotional ambivalence regarding their role. Caregivers valued the technical and relational proximity of PC, particularly home visits, accessibility via telephone, practical guidance, and coordination with rehabilitation teams. Perceived late referrals, waiting times, and shortages of human resources were recurrent themes. Social life, work, and financial domains were particularly affected, with unmet needs relating to respite, bureaucratic barriers, and access to social support.

Discussion: Community PC increased caregivers’ sense of safety, competence, and reassurance, particularly through easily accessible, home-based support. However, broader needs, particularly in relation to personal time, social participation, and navigating social and labor rights, remain insufficiently addressed. Structural limitations in formal support services and referral delays can further exacerbate caregiver burden.

Conclusion: Home-based care relies heavily on caregivers who have very limited time and substantial responsibilities. To improve the caregiving experience and promote equitable, sustainable end-of-life care at home, it is essential to strengthen early PC involvement, improve accessibility (including structured telephone support), and integrate social and labor policies, such as providing respite options, simplifying access to benefits, and protecting caregivers’ financial security.