Wu Meng-Ping, Huang Sheng-Jean, Tsao Lee-Ing
Department of Nursing and Center of R/D in Community Based Palliative Care, Taipei, Taiwan.
Community Nursing Section, Department of Nursing, Taipei City Hospital, Taipei, Taiwan.
Am J Hosp Palliat Care. 2020 Oct;37(10):816-822. doi: 10.1177/1049909120907601. Epub 2020 Mar 1.
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).
To identify common themes and topics of primary family caregivers' lived experiences with HBPC when taking care of terminally ill family members.
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.
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.
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由于人口老龄化、医疗费用高昂、住院天数有限以及能够得到家人照顾等原因，越来越多的晚期疾病患者更倾向于在家中离世。然而，关于家庭姑息治疗（HBPC）中照顾者的主观认知和价值的研究却很少。
确定主要家庭照顾者在照顾晚期家庭成员时对HBPC的生活经历的共同主题和话题。
我们对HBPC的主要家庭照顾者进行了一对一深入访谈的录音转录。通过目的抽样方法，对参与者进行了全部访谈；这些访谈逐字转录，并采用扎根理论方法进行分析。
共有22名主要家庭照顾者参与了该研究。“全心全意陪伴家人在家中走到生命尽头”是核心类别。访谈中出现了六个描述照顾者经历的主要主题：（1）学习临终家庭护理的基本技能，（2）安排护理的分担和轮值，（3）为即将到来的死亡和葬礼做准备，（4）协商临终家庭护理的文化和伦理问题，（5）确保在基本生活支持下过上舒适的生活，（6）保持以关心、坚持和耐心为特征的护理。
