Akter Sayema, Sarker Malabika, Hossain Puspita, Ahmad Nezamuddin, Zaman Shahaduz
Research Fellow, BRAC James P Grant School of Public Health, BRAC University, 6th Floor, Medona Tower, 28 Mohakhali Commercial Area, Bir Uttom A K Khandakar Road, Dhaka 1213, Bangladesh.
BRAC James P Grant School of Public Health, BRAC University, Dhaka, Bangladesh.
Palliat Care Soc Pract. 2022 May 4;16:26323524221095104. doi: 10.1177/26323524221095104. eCollection 2022.
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.
姑息治疗已被视为一项全球健康挑战。尽管可及性有所提高，但在低收入和中等收入国家，姑息治疗的重要性却鲜少得到认可。在孟加拉国，由于缺乏认识、资金限制和设施较少，机构性姑息治疗难以获得。因此，需要更好地理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照料者的经历至关重要。出于这一目的，本研究探讨了参与由达卡市一个城市贫民窟的孟加拉国谢赫·穆吉布·拉赫曼医科大学开展的“Momotamoy Korail”姑息治疗项目的姑息治疗患者及其主要照料者的经历。
本研究是一项更大的定性研究的一部分，该研究采用了聚焦民族志方法。对于本研究，我们根据半结构化指南，对参与社区姑息治疗项目的姑息治疗患者及其主要照料者进行了19次深入访谈。
大多数女性（妻子和儿媳）是家庭中的主要照料者。因此，男性患者比女性患者更有可能获得家庭照料。男性和女性患者都表达了对无痛苦死亡的渴望。所有患者都感到孤独和被社会抛弃，觉得自己是家人的负担。尽管在身体、社会、心理和经济痛苦方面存在差异，但患者和照料者对无病健康生活持乐观态度。所有受访者都对从姑息治疗助理那里得到的照料感到满意，这些助理为他们提供了生活的希望和尊严。
受访者的经历可以提高现有社区姑息治疗服务的质量，并为公共卫生领域的姑息治疗学科增添巨大价值。研究结果提供了关于将社区姑息治疗扩展到其他医疗环境所需条件的理解。需要通过社区动员提高对姑息治疗需求和益处的认识，以使其可持续发展。
