The Experience of Bereaved South Asian Family Caregivers of Adult Family Members: An Interpretive Description

Abstract

The South Asian population faces several challenges when receiving palliative care, including language barriers, unawareness of resources, and poor cultural awareness among health care providers. However, little is known about the needs of South Asian family caregivers in Canada. The purpose of this study is to understand the experience of bereaved South Asian caregivers, who cared for a family member in their last year of life. An interpretive description design was used. Eleven participants were recruited from a community hospice and a community health centre. Participants were adult South Asian caregivers and at least two months bereaved. Audio-recorded one-on-one interviews were conducted, followed by a thematic analysis of the transcripts. Five themes were identified to describe the experience of bereaved South Asian family caregivers: transforming perceptions of life and death, the influence of culture on the experience; the challenges of being a caregiver; coping with the challenges of caregiving; and getting support. Caregivers expressed feeling a sense of duty to their family members and were reluctant to utilize long-term care homes or hospices. Misconceptions associated with roles, such as personal support workers, affected caregivers' experiences and their access to formal support services. In reflecting on their experiences, caregivers had a deeper appreciation for life and were more willing to talk about death and dying. The experience of South Asian caregivers is complex with several underlying cultural influences. This study has important implications for improving the delivery of culturally sensitive palliative care and developing supports that address the challenges experienced by caregivers in the South Asian community.