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Illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh: A cross-sectional study.
PLOS Medicine ( IF 10.5 ) Pub Date : 2020-03-03 , DOI: 10.1371/journal.pmed.1003011 Megan Doherty 1, 2, 3 , Liam Power 4 , Mila Petrova 5 , Scott Gunn 6 , Richard Powell 7 , Rachel Coghlan 8 , Liz Grant 9 , Brett Sutton 10 , Farzana Khan 11
PLOS Medicine ( IF 10.5 ) Pub Date : 2020-03-03 , DOI: 10.1371/journal.pmed.1003011 Megan Doherty 1, 2, 3 , Liam Power 4 , Mila Petrova 5 , Scott Gunn 6 , Richard Powell 7 , Rachel Coghlan 8 , Liz Grant 9 , Brett Sutton 10 , Farzana Khan 11
Affiliation
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BACKGROUND
Despite recognition that palliative care is an essential component of any humanitarian response, serious illness-related suffering continues to be pervasive in these settings. There is very limited evidence about the need for palliative care and symptom relief to guide the implementation of programs to alleviate the burden of serious illness-related suffering in these settings. A basic package of essential medications and supplies can provide pain relief and palliative care; however, the practical availability of these items has not been assessed. This study aimed to describe the illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh.
METHODS AND FINDINGS
Between November 20 and 24, 2017, we conducted a cross-sectional study of individuals with serious health problems (n = 156, 53% male) and caregivers (n = 155, 69% female) living in Rohingya refugee camps in Bangladesh, using convenience sampling to recruit participants at the community level (i.e., going house to house to identify eligible individuals). The serious health problems, recent healthcare experiences, need for medications and medical supplies, and basic needs of participants were explored through interviews with trained Rohingya community members, using an interview guide that had been piloted with Rohingya individuals to ensure it reflected the specificities of their refugee experience and culture. The most common diagnoses were significant physical disabilities (n = 100, 64.1%), treatment-resistant tuberculosis (TB) (n = 32, 20.5%), cancer (n = 15, 9.6%), and HIV infection (n = 3, 1.9%). Many individuals with serious health problems were experiencing significant pain (62%, n = 96), and pain treatments were largely ineffective (70%, n = 58). The average age was 44.8 years (range 2-100 years) for those with serious health problems and 34.9 years (range 8-75 years) for caregivers. Caregivers reported providing an average of 13.8 hours of care per day. Sleep difficulties (87.1%, n = 108), lack of appetite (58.1%, n = 72), and lack of pleasure in life (53.2%, n = 66) were the most commonly reported problems related to the caregiving role. The main limitations of this study were the use of convenience sampling and closed-ended interview questioning.
CONCLUSIONS
In this study we found that many individuals with serious health problems experienced significant physical, emotional, and social suffering due to a lack of access to pain and symptom relief and other essential components of palliative care. Humanitarian responses should develop and incorporate palliative care and symptom relief strategies that address the needs of all people with serious illness-related suffering and their caregivers.
中文翻译：
孟加拉国罗兴亚难民和看护者的与疾病有关的痛苦和姑息治疗的需要：一项横断面研究。
背景技术尽管人们认识到姑息治疗是任何人道主义对策的重要组成部分，但在这些情况下，与疾病有关的严重痛苦仍普遍存在。很少有证据表明需要姑息治疗和症状缓解来指导实施方案以减轻这些情况下与疾病有关的严重疾病的负担。基本药物和用品的基本包装可以缓解疼痛和姑息治疗；但是，尚未评估这些项目的实际可用性。这项研究旨在描述孟加拉国罗兴亚难民和看护者与疾病相关的痛苦和姑息治疗的需求。方法和发现2017年11月20日至24日，我们对患有严重健康问题（n = 156，居住在孟加拉国罗兴亚难民营中的男性（53％）和看护者（n = 155，女性69％）使用便利抽样在社区一级招募参与者（即挨家挨户确定合格人员）。严重的健康问题，最近的医疗保健经验，对药物和医疗用品的需求以及参与者的基本需求，是通过与罗兴亚人一起试行的访谈指南，以确保其反映了他们的特殊性，通过与受过训练的罗兴亚社区成员的访谈进行了探索难民的经验和文化。最常见的诊断是严重的身体残疾（n = 100，64.1％），耐治疗性结核病（TB）（n = 32，20.5％），癌症（n = 15，9.6％）和HIV感染（n = 3 ，占1.9％）。许多有严重健康问题的人正遭受严重的疼痛（62％，n = 96），而疼痛治疗在很大程度上无效（70％，n = 58）。患有严重健康问题的人的平均年龄为44.8岁（2-100岁），而护理人员的平均年龄为34.9岁（8-75岁）。护理人员报告说平均每天提供13.8小时的护理。睡眠困难（87.1％，n = 108），食欲不振（58.1％，n = 72）和生活乐趣不足（53.2％，n = 66）是与护理角色有关的最常报告的问题。该研究的主要局限性是便利抽样和封闭式访谈提问的使用。结论在这项研究中，我们发现许多严重健康问题的人在身体，情感，由于无法获得疼痛和症状缓解以及姑息治疗的其他基本要素而造成的社会痛苦。人道主义应对措施应制定并纳入姑息治疗和症状缓解策略，以解决所有患有严重疾病相关苦难者及其照料者的需求。
更新日期：2020-03-03
中文翻译：
孟加拉国罗兴亚难民和看护者的与疾病有关的痛苦和姑息治疗的需要：一项横断面研究。
背景技术尽管人们认识到姑息治疗是任何人道主义对策的重要组成部分，但在这些情况下，与疾病有关的严重痛苦仍普遍存在。很少有证据表明需要姑息治疗和症状缓解来指导实施方案以减轻这些情况下与疾病有关的严重疾病的负担。基本药物和用品的基本包装可以缓解疼痛和姑息治疗；但是，尚未评估这些项目的实际可用性。这项研究旨在描述孟加拉国罗兴亚难民和看护者与疾病相关的痛苦和姑息治疗的需求。方法和发现2017年11月20日至24日，我们对患有严重健康问题（n = 156，居住在孟加拉国罗兴亚难民营中的男性（53％）和看护者（n = 155，女性69％）使用便利抽样在社区一级招募参与者（即挨家挨户确定合格人员）。严重的健康问题，最近的医疗保健经验，对药物和医疗用品的需求以及参与者的基本需求，是通过与罗兴亚人一起试行的访谈指南，以确保其反映了他们的特殊性，通过与受过训练的罗兴亚社区成员的访谈进行了探索难民的经验和文化。最常见的诊断是严重的身体残疾（n = 100，64.1％），耐治疗性结核病（TB）（n = 32，20.5％），癌症（n = 15，9.6％）和HIV感染（n = 3 ，占1.9％）。许多有严重健康问题的人正遭受严重的疼痛（62％，n = 96），而疼痛治疗在很大程度上无效（70％，n = 58）。患有严重健康问题的人的平均年龄为44.8岁（2-100岁），而护理人员的平均年龄为34.9岁（8-75岁）。护理人员报告说平均每天提供13.8小时的护理。睡眠困难（87.1％，n = 108），食欲不振（58.1％，n = 72）和生活乐趣不足（53.2％，n = 66）是与护理角色有关的最常报告的问题。该研究的主要局限性是便利抽样和封闭式访谈提问的使用。结论在这项研究中，我们发现许多严重健康问题的人在身体，情感，由于无法获得疼痛和症状缓解以及姑息治疗的其他基本要素而造成的社会痛苦。人道主义应对措施应制定并纳入姑息治疗和症状缓解策略，以解决所有患有严重疾病相关苦难者及其照料者的需求。
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