Research on the patient experience of receiving palliative care across a number of settings is increasing, but the majority of these investigations are situated within the context of developed countries. There is limited research from resource-limited countries, especially with regard to patients with cancer who receive hospice care. The present study explored the lived experience of attending hospice care facilities in South Africa to develop a bottom-up understanding from the perspectives of patients themselves. A qualitative cross-sectional study was designed to examine how patients experienced receiving hospice care We conducted in-depth, semi-structured interviews with thirteen, purposively selected patients living with terminal cancer and receiving in-patient or day care palliative services from a hospice organisation in South Africa. We used inductive thematic analysis to analyse the data. We identified three themes that reflected a process of transformation that was experienced by participants during their engagement with the hospice services. The first theme describes participants’ initial reluctance to be linked to the hospice as a result of the stereotypic perceptions of hospice as being associated with death and dying. The second theme presents the perceived positive impact on patients’ physical and psychosocial wellbeing which resulted from the highly valued interactions with staff and other patients as well as patients’ engagement with creative activities. The final theme delineates the transformation of hospice into a second ‘family’ and ‘home’ and the restoration of an identity that expands beyond the ‘sick’ role. Receiving hospice care that sensitively attends to patients’ psychosocial and physical needs helps people to re-create a sense of homeliness within the world, re-orient themselves toward a meaningful life and re-configure their relationship with self. Patient experience of receiving hospice care in South Africa does not appear dissimilar to that reported by patients in resource-rich countries, suggesting underlying commonalities. There is a need for raising awareness and educating the public about what palliative care can offer to those in need. Public health campaigns could help reduce the stigma attached to palliative care, deflect negative perceptions, and communicate the benefits for patients, families and communities in culturally sensitive ways.

中文翻译：

---

“对待我的方式就好像我在母亲的照顾下”：对患者在南非接受临终关怀服务的经历进行的定性研究。

关于在多种情况下接受姑息治疗的患者体验的研究正在增加，但是这些研究中的大多数是在发达国家范围内进行的。资源有限国家的研究有限，尤其是对于接受临终关怀治疗的癌症患者。本研究探索了在南非使用临终关怀设施的实际经验，以便从患者自身的角度发展自下而上的理解。设计了定性横断面研究，以检查患者接受临终关怀的经历我们对十三位故意选择的患有晚期癌症并从临终关怀组织接受住院或日间姑息治疗的患者进行了深入，半结构化的访谈在南非。我们使用归纳主题分析来分析数据。我们确定了三个主题，这些主题反映了参与者参与临终关怀服务期间经历的转型过程。第一个主题描述了参与者最初对与临终关怀有关的不情愿，这是由于对临终关怀与死亡和垂死有关的陈规定型观念的结果。第二个主题提出了对患者身体和心理健康的积极影响，这是与员工和其他患者的高度重视的互动以及患者参与创造性活动的结果。最后一个主题描述了临终关怀中心转变为第二个“家庭”和“家”，以及身份的扩展，超越了“病态”的角色。灵敏地照顾患者的心理和身体需求的临终关怀护理可以帮助人们在世界范围内重新建立一种居家般的感觉，使自己重新适应有意义的生活，并重新配置与自我的关系。在南非，接受临终关怀护理的患者经验与资源丰富国家的患者所报告的经验似乎没有什么不同，这表明存在潜在的共性。有必要提高认识并教育公众有关姑息治疗可以为有需要者提供的服务。公共卫生运动可以帮助减轻对姑息治疗的污名化，消除负面看法，并以文化敏感的方式传达对患者，家庭和社区的好处。