The Life Experiences Among Primary Family Caregivers of Home-Based Palliative Care

Abstract

Background: An increasing number of patients with terminal illnesses prefer to die in their own homes due to aging, high medical payments, a limited number of hospitalization days, and the ability to receive care from family members. However, few studies have been conducted on the subjective perception and value of caregivers for home-based palliative care (HBPC). Objective: To identify common themes and topics of primary family caregivers’ lived experiences with HBPC when taking care of terminally ill family members. Methods: We conducted audio-recorded transcripts of one-on-one in-depth interviews of primary family caregivers of HBPC. Through a purposive sampling method, the participants were all interviewed; these interviews were transcribed verbatim and analyzed using a grounded theory approach. Results: A total of 22 primary family caregivers participated in the study. “Wholeheartedly accompanying one’s family to the end of life at home” was the core category. Six main themes describing caregivers’ experiences emerged from the interviews: (1) learning the basic skills of end-of-life home care, (2) arranging the sharing and rotation of care, (3) preparing for upcoming deaths and funerals, (4) negotiating the cultural and ethical issues of end-of-life home care, (5) ensuring a comfortable life with basic life support, and (6) maintaining care characterized by concern, perseverance, and patience. Conclusions: Primary family caregivers of HBPC need support and must learn home care skills by means of the holistic approach. It is crucial to establish assessment tools for caregivers’ preparedness for HBPC, including biopsychosocial and cultural considerations.

Development of the Readiness for Home-Based Palliative Care Scale (RHBPCS) for Primary Family Caregivers

“…The readiness for home-based palliative care scale (RHBPCS) was initialized following the conceptual framework based on the pilot qualitative study from family caregivers of EOL patients and clinicians [ 14 ]. Three stages of the development of RHBPCS are described as follows:…”

“…(3) preparing for upcoming deaths and funerals; (4) negotiating the cultural and ethical issues of end-of-life home care; (5) ensuring a comfortable life with basic life support; and (6) maintaining care characterized by concern, perseverance, and patience [14].…”

“…After 2 rounds of expert panels, the original 7 subscales were integrated into 4 subscales and 8 items were deleted due to either being duplicates of other items or having unclear item descriptions. The revised version of RHBPCS was determined as follows: (1) family maintenance and consensus (items 1-3); (2) home care skills and hospice preparation (items 4-8); (3) arrangements for sharing and rotation (items 9-11); and (4) timely emergency management and palliative care (items [12][13][14][15].…”

“…However, clinicians can teach family caregivers the value and benefits of HBPC, and can provide necessary help and support for EOL patients at home with their families [ 13 ]. As an increasingly prevalent care mode, HBPC has gained increasing importance worldwide, and the readiness of family caregivers is now regarded as an important factor for the promotion of HBPC [ 14 ]. However, according to the current knowledge, there is no measurement instruments or scales for measuring the readiness for home-based palliative care of family caregivers.…”

Comparison of the experience of caregiving at end of life or in hastened death: a narrative synthesis review

“…The caregiver has the skills and resources to solve a problem; death brings an end to suffering or is consistent with patient wishes; the caregiver has guidance or professional help in dealing with post-death tasks [28, 33, 36-38, 45, 46, 50, 54, 56, 57] Healthcare providers help plan for or carry out the death; the caregiver finds the hastened death to be peaceful or joyful; loved ones have a chance for closure; the patient avoids unwanted suffering [15,16,[66][67][68][69][70] "We all toasted with the bourbon. Yep.…”