Department of Psychology, University of Bath, 10 West Building, Bath, BA2 7AY, UK.
Department of Social Work, University of West Attica, 12241, Athens, Greece.
BMC Palliat Care. 2020 Jul 1;19(1):95. doi: 10.1186/s12904-020-00605-1.
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.
越来越多的研究关注在多个环境下接受姑息治疗的患者体验，但这些研究大多是在发达国家的背景下进行的。资源有限的国家，尤其是接受临终关怀的癌症患者的相关研究有限。本研究旨在探索南非临终关怀机构患者的生活体验，从患者自身的角度来深入了解。
本研究采用定性横断面研究设计，旨在从患者的角度来考察他们接受临终关怀的体验。我们对南非一家临终关怀组织的 13 名接受姑息治疗的终末期癌症患者进行了深入的、半结构化访谈。我们采用归纳主题分析来分析数据。
我们确定了三个主题，反映了参与者在参与临终关怀服务时经历的一个转变过程。第一个主题描述了参与者最初不愿意与临终关怀机构联系，因为他们对临终关怀机构的刻板印象，认为临终关怀与死亡和临终有关。第二个主题展示了患者在与工作人员和其他患者的高度重视的互动以及参与创造性活动中，患者的身体和心理社会健康得到了明显改善。最后一个主题描绘了临终关怀转变为第二个“家庭”和“家”，以及患者超越“病人”角色的身份的恢复。
接受关注患者身心需求的临终关怀服务有助于人们在这个世界上重新创造一种舒适感，重新定位自己的生活，重新构建与自我的关系。南非患者接受临终关怀的体验与资源丰富国家的患者报告的体验并没有太大区别，这表明存在潜在的共性。需要提高公众对姑息治疗的认识和教育，让他们了解姑息治疗能为有需要的人提供什么。公共卫生宣传活动可以帮助减轻姑息治疗的污名化，改变负面看法，并以文化敏感的方式向患者、家庭和社区传达其益处。
