The First Affiliated Hospital of Shantou University Medical College, Shantou, 515000, People's Republic of China.
Nursing Department, The First Affiliated Hospital of Shantou University Medical College, Shantou, 515000, People's Republic of China.
Support Care Cancer. 2021 Sep;29(9):4949-4956. doi: 10.1007/s00520-021-06037-8. Epub 2021 Feb 10.
The needs and experiences of palliative home care for patients with advanced cancer have received little research attention. We aimed to explore the needs and experiences of palliative home care among patients with advanced cancer in China.
This qualitative study was conducted using semi-structured interviews with patients with advanced cancer. Participants (n = 15) were recruited from an oncology palliative care unit and a hospice outpatient unit, and were selected using purposive sampling from October 2019 to March 2020. Interviews were audio-recorded, transcribed verbatim, and subjected to thematic analysis. Two researchers coded the interviews independently in NVivo 12 and developed major themes and subthemes by inductive and constant comparison.
Five themes were identified: (1) physical need; (2) psychological experience; (3) spiritual need; (4) social need; and (5) information need. Patients need to manage their symptoms (especially cancer pain), prolong life as long as possible, reconstruct their attitudes to adapt to their roles, be socially supported, be respected, maintain spiritual peace, and obtain more information about illness and home care.
The current palliative home care services are imperfect, and patients face substantial challenges, including physical symptoms, psychological/spiritual distress, and inadequate social support and information. Our findings may provide evidence and a reference for the development of palliative home care in China.
晚期癌症患者的姑息性家庭护理需求和体验尚未得到充分关注。本研究旨在探讨中国晚期癌症患者姑息性家庭护理的需求和体验。
本定性研究采用半结构式访谈法,对 15 例晚期癌症患者进行访谈。研究对象于 2019 年 10 月至 2020 年 3 月期间,通过目的抽样法,分别从肿瘤姑息治疗病房和临终关怀门诊招募。访谈进行录音并逐字转录,采用 NVivo 12 软件进行主题分析。两名研究人员对访谈进行独立编码,并采用归纳和持续比较的方法,确定主要主题和子主题。
本研究共确定了 5 个主题:(1)身体需求;(2)心理体验;(3)精神需求;(4)社会需求;(5)信息需求。患者需要管理症状(尤其是癌痛)、尽可能延长生命、调整态度以适应角色、获得社会支持、得到尊重、保持精神安宁,并获取更多关于疾病和家庭护理的信息。
目前的姑息性家庭护理服务不完善,患者面临诸多挑战,包括身体症状、心理/精神困扰、社会支持和信息不足。本研究结果可为中国姑息性家庭护理的发展提供证据和参考。