Goombs Mary, Mah Kenneth, Namisango Eve, Luyirika Emmanuel, Mwangi-Powell Faith, Gikaara Nancy, Chalklin Lesley, Rydall Anne, Zimmermann Camilla, Hales Sarah, Wolofsky Kayla, Tilly Alyssa, Powell Richard A, Rodin Gary
Department of Supportive Care, University Health Network, Toronto, ON, Canada.
African Palliative Care Association, Kampala, Uganda.
Palliat Support Care. 2024 Oct;22(5):1169-1178. doi: 10.1017/S1478951523001463.
Minimal information is available about the quality of dying and death in Uganda and Kenya, which are African leaders in palliative care. We investigated the quality of dying and death in patients with advanced cancer who had received hospice care in Uganda or Kenya.
Observational study with bereaved caregivers of decedents (Uganda: = 202; Kenya: = 127) with advanced cancer who had received care from participating hospices in Uganda or Kenya. Participants completed the Quality of Dying and Death questionnaire and a measure of family satisfaction with cancer care (FAMCARE).
Quality of Dying and Death Preparation and Connectedness subscales were most frequently rated as good to almost perfect for patients in both countries (45.5% to 81.9%), while Symptom Control and Transcendence subscales were most frequently rated as intermediate (42.6% to 60.4%). However, 35.4% to 67.7% of caregivers rated overall quality of dying and overall quality of death as terrible to poor. Ugandan caregivers reported lower Preparation, Connectedness, and Transcendence ( < .001). Controlling for covariates, overall quality of dying was associated with better Symptom Control in both countries ( < .001) and Transcendence in Uganda ( = .010); overall quality of death, with greater Transcendence in Uganda ( = .004); and family satisfaction with care, with better Preparation in Uganda ( = .004).
Findings indicate strengths in spiritual and social domains of the quality of dying and death in patients who received hospice care in Uganda and Kenya, but better symptom control is needed to improve this outcome in these countries.
关于乌干达和肯尼亚临终及死亡质量的信息极少，而这两个国家在姑息治疗方面处于非洲领先地位。我们调查了在乌干达或肯尼亚接受临终关怀的晚期癌症患者的临终及死亡质量。
对乌干达（n = 202）和肯尼亚（n = 127）晚期癌症逝者的丧亲照料者进行观察性研究，这些逝者曾在乌干达或肯尼亚参与研究的临终关怀机构接受照料。参与者完成了《临终及死亡质量问卷》以及一项癌症护理家庭满意度测评（FAMCARE）。
两个国家的患者在临终及死亡准备和联结性子量表上的评分大多为良好至近乎完美（45.5%至81.9%），而症状控制和超越性子量表的评分大多为中等（42.6%至60.4%）。然而，35.4%至67.7%的照料者将临终总体质量和死亡总体质量评为糟糕至较差。乌干达的照料者在准备、联结和超越方面的评分较低（P <.001）。在控制协变量后，两个国家的临终总体质量均与更好的症状控制相关（P <.001），在乌干达还与超越性相关（P = 0.010）；死亡总体质量方面，在乌干达与更高的超越性相关（P = 0.004）；家庭护理满意度方面，在乌干达与更好的准备相关（P = 0.004）。
研究结果表明，在乌干达和肯尼亚接受临终关怀的患者在临终及死亡质量的精神和社会领域存在优势，但在这些国家需要更好地控制症状以改善这一结果。
