Family Caregivers Perceptions of Palliative Care in Home and Unit: The Balance between Given and Received Support

Sabrina Lessard

doi:10.15226/2374-8362/1/3/00115

Abstract

Background: Family caregivers providing care to a terminally ill person are affected by the challenge of providing care at the endof-life stage. A palliative approach can differently mark the end-oflife experience for the caregiver, according to the kind of given and received social support. We searched to increase our understanding of what could influence the perceived experience of care by caregivers. Methods: This study focused on the experience of family caregivers, using a qualitative method, in regard to their perceptions of given and received social support from formal and informal sources while caring for a terminally ill person in different settings and trajectories of care, in home care or a specialized unit. Participants were 23 caregivers who cared for end-of-life patients at home and/ or in a specialized palliative care unit. Semi-structured face-to-face interviews were performed 3 to 6 months later and the data gathered were then qualitatively analyzed using an inductive grounded theory approach. Results: The results show that caring for a terminally ill person requires continuous balancing between given and received support to ease the caregiver’s experience. Analysis has identified the aspects affecting the balance between given and received social support and the ability of the caregiver to keep a positive perception of the lived experience. Conclusion: Finding revealed that family caregivers seem to cope better if they perceived sufficient social support during the caring period. These findings might be useful in the continuous improvement of training for different settings in palliative care and to focus on identifing the needs of caregivers.

Highlights

In past decades, efforts were made to implement the shift to ambulatory care and to reduce the length of hospital stays in the province of Quebec, Canada, as elsewhere in industrialized countries
It indicated that support was provided by the family caregivers to the terminally ill person or received by the family caregivers from the ill person as well as their informal and formal networks
The results of this study revealed that in a palliative care context, the different aspects shown in Figure 1 impact the balance and Citation: Lessard S, Leclerc BS, Mongeau S (2014) Family Caregivers Perceptions of Palliative Care in Home and Unit: The Balance Page 7 of 10 between Given and Received Support

Summary

Introduction

Efforts were made to implement the shift to ambulatory care and to reduce the length of hospital stays in the province of Quebec, Canada, as elsewhere in industrialized countries. Following the reorganisation of the health system, certain responsibilities previously assumed by the state have been transferred to other social actors, especially to patients and their families [1,2] This shift reinforced a “dumbing-down” of care [1] and assumed that health care can be managed by ordinary people. According to studies focused on family caregivers’ experience, the burden of care is important [4,6,7,8] This challenge encompasses the management of physical care, practical daily living activities and emotional support while handling their own emotional distress about the care and concerns of the loss of the terminally ill person [4,7,9]. We searched to increase our understanding of what could influence the perceived experience of care by caregivers

Objectives

Methods

Results

Discussion

Conclusion