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首页> 外文期刊>BMC Palliative Care >“The way I am treated is as if I am under my mother’s care”: qualitative study of patients’ experiences of receiving hospice care services in South Africa
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“The way I am treated is as if I am under my mother’s care”: qualitative study of patients’ experiences of receiving hospice care services in South Africa

机译：“我对待的方式就好像我在母亲的照顾下”：对南非接受临终关怀服务的患者经验的定性研究

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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.
机译：在许多环境中接受姑息治疗的患者体验的研究正在增加，但大多数这些调查都位于发达国家的背景范围内。资源有限国家的研究有限，特别是关于接受临终关怀护理的癌症的患者。本研究探讨了参加南非的临终关怀护理设施的生活经验，从患者自己的角度来发展自下而上的理解。旨在审查患者在接受临终关怀的患者的患者患者的患者中进行了深入，半结构化访查，患有终端癌症和从临终关怀组织接受患者或日托姑息服务的患者进行了深入的。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，反映了参与者在与临终关怀服务的参与期间经历过的转型过程。第一个主题描述了参与者的初步不愿意与临终关怀的陈规定型看作与死亡和死亡相关的结果。第二个主题提出了对患者的身体和心理社会福祉的感知积极影响，这是由与员工和其他患者的高度重视互动以及患者与创造性活动的参与作用。最终主题将临终关怀转变为第二个“家庭”和“家”以及恢复超出“生病”角色的身份。接受临终关怀的护理，敏感地参加患者的心理社会和身体需求，有助于人们在世界内重新创造一种习惯感，重新朝着一个有意义的生活重新定位并重新配置他们与自我的关系。在南非接受临终关怀护理的患者经验并不与资源丰富的国家患者报告的差异，表明潜在的共性。有必要提高认识和教育公众对有需要的人可以提供的姑息治疗。公共卫生运动可以帮助减少附加姑息治疗，偏转负面看法的耻辱，并在文化敏感方式中传达患者，家庭和社区的益处。

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