Solidarity and suffering: enrolled terminal patients' and their caregiver's experiences of the community-based palliative care programme in an urban slum of Bangladesh.
Solidarity and suffering: enrolled terminal patients' and their caregiver's experiences of the community-based palliative care programme in an urban slum of Bangladesh.
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DOI：
10.1177/26323524221095104
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发表时间：
2022
影响因子：
--
通讯作者：
Zaman, Shahaduz
中科院分区：
文献类型：
--
作者：
Akter, Sayema;Sarker, Malabika;Hossain, Puspita;Ahmad, Nezamuddin;Zaman, Shahaduz
姑息治疗已被公认为全球健康挑战。虽然可获得性有所增加，但在中低收入国家，人们很少认识到姑息治疗的重要性。在孟加拉国，由于缺乏认识、财政限制和设施较少，无法获得机构姑息治疗。因此，需要更好地了解提供和改善现有的社区姑息治疗。为此，了解需要姑息治疗的患者及其护理人员的经历至关重要。有了这个目标，本研究探讨了姑息治疗患者和他们的主要照顾者参加姑息治疗项目，'Momotamoy Korail'班加班杜谢赫穆吉布医科大学在城市贫民窟，达卡运行的经验。这项研究是一个更大的定性研究的一部分，依赖于一个集中的民族志方法。在这项研究中，我们使用了19个深度访谈后，半结构化的指导方针与姑息治疗患者和他们的主要照顾者参加了以社区为基础的姑息治疗项目。大多数情况下，妇女（妻子和儿媳）是家庭中的主要照顾者。因此，男性患者比女性患者更有可能接受家庭护理。男性和女性患者都表达了对没有痛苦的死亡的渴望。所有患者都感到孤独和社会遗弃，认为自己是家庭的负担。尽管身体、社会、心理和经济上的痛苦多种多样，但患者和护理人员对没有疾病的健康生活持乐观态度。所有受访者都对他们从姑息治疗助理那里得到的护理感到满意，这给了他们生活的希望和尊严。受访者的经验，可以提高现有的社区为基础的姑息治疗服务的质量，并增加了公共卫生姑息治疗学科的巨大价值。研究结果提供了一个什么将需要扩展到其他医疗保健环境的社区为基础的姑息治疗的理解。需要通过社区动员提高对姑息治疗的必要性和益处的认识，以使其可持续。
Palliative care has been recognised as a global health challenge. Although accessibility has increased, there is little recognition of the importance of palliative care in low- and middle-income countries. In Bangladesh, institutional palliative care is not accessible due to a lack of awareness, financial constraints, and fewer facilities. Hence, there needs to be a better understanding of providing and improving existing community-based palliative care. For this, it is essential to understand the experiences of patients and their caregivers who require palliative care. With this aim, this study explores the experiences of palliative patients and their primary caregivers enrolled in a palliative care project, ‘Momotamoy Korail’ run by Bangabandhu Sheikh Mujib Medical University in an urban slum, Dhaka. This research is a part of a larger qualitative study that relied on a focused ethnographic approach. For this study, we used 19 in-depth interviews following a semi-structured guideline with the palliative care patients and their primary caregivers enrolled in the community-based palliative care project. Mostly women (wives and daughters-in-law) are the primary caregivers in a family. Therefore, male patients are more likely to receive family care than female patients. Both male and female patients expressed the desire for a death free of suffering. All patients felt lonely and socially abandoned with a perception of being a burden to their families. Despite the diversity in physical, social, psychological, and financial suffering, patients and caregivers were optimistic towards a healthy life free of illness. All respondents were satisfied with the care they received from the palliative care assistants, which provide them hope and dignity for life. Experiences of the respondents can improve the quality of the existing community-based palliative care services and add great value to the discipline of palliative care in public health. The findings provided an understanding of what would be required to extend community-based palliative care to other healthcare settings. More awareness through community mobilisation about the need for and benefit of palliative care is needed to make it sustainable.
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影响因子：
4.1
作者：
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通讯作者：
BuildCARE
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