Exploring the Taiwanese Anticipatory Experience of Grief Among Primary Caregivers in Palliative Home Care

Am J Hosp Palliat Care. 2023 Feb;40(2):136-146. doi: 10.1177/10499091221096351. Epub 2022 May 23.

Abstract

Aims and Objectives: The goal of the present study was to explore anticipatory grief experiences among primary caregivers in home-based palliative care. We placed a special emphasis on coping methods adopted by individuals from Eastern cultures when facing death. Background: Most patients prefer spending their last days at home, which often exerts considerable physical and mental stress on their primary caregivers. Design: This study adopted a qualitative exploratory research design and used open-ended in-depth interviews to explore anticipatory grief experiences among primary caregivers of patients receiving palliative home care. Methods: In the study of the factors that Anticipatory Experience of Grief among Primary Caregivers in Palliative Home Care, we used the phenomenological approach and methods to glean answers. Posters and snowball sampling were used to individually recruit participants. In total, 16 primary hospice home caregivers participated. We used semi-structured interviews to collect data. The interviews were audio-recorded in a quiet location. Each interview was divided into two to three sessions, and each session lasted 60-90 minutes. For data analysis, field notes and audio recordings are transcribed into protocols. A thematic analysis method was used to analyze the context of the interviews. Sampling and analysis processes were repeated until theoretical saturation was achieved. Results: Four major themes emerged from the categorized interview data: meaning and manifestation as to the essence of life, the art of coping with death, realization and the gift of death, and adapting, coping with, and controlling emotions. Additionally, we observed, as with many Eastern cultures, a lunar calendar death in July and crying at the death of a relative is considered taboo. Conclusions: The coping methods adopted by individuals in Eastern cultures when facing death were summarized accordingly. These findings could serve as a reference to better understand the coping mechanisms these individuals use to address anticipatory grief when facing a family member's impending death. Relevance to Clinical Practice: Potential relevance for the present findings include acceptance of Eastern cultural grief customs, early hospice and palliative care interventions for helping individuals adjust to their grief, case management and resource consolidation, providing 24-hour telephone consultation services, regular assessment visits, and developing localized teaching materials for life-and-death education.

Keywords: end-of-life; grief; palliative care.

MeSH terms

  • Caregivers / psychology
  • Grief
  • Home Care Services*
  • Humans
  • Palliative Care* / psychology
  • Referral and Consultation
  • Telephone