Illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh: A cross-sectional study
| Autor: | Richard A Powell, Brett Sutton, Megan Doherty, Liam Power, Farzana Khan, Liz Grant, Scott Gunn, Rachel Coghlan, Mila Petrova |
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| Přispěvatelé: | Doherty, Megan [0000-0003-3905-2169], Power, Liam [0000-0001-9779-5804], Petrova, Mila [0000-0001-7351-6815], Coghlan, Rachel [0000-0002-3596-4630], Grant, Liz [0000-0001-7248-7792], Khan, Farzana [0000-0001-5681-0406], Apollo - University of Cambridge Repository |
| Rok vydání: | 2020 |
| Předmět: |
Male
Health Knowledge Attitudes Practice Palliative care Cross-sectional study Emotions Engineering and technology 030204 cardiovascular system & hematology Health Services Accessibility 0302 clinical medicine Cost of Illness Health care Psychology 030212 general & internal medicine Child media_common Aged 80 and over Analgesics Bangladesh Refugees Pharmaceutics Refugee Camps Palliative Care FOS: Social sciences Drugs General Medicine Middle Aged Relief Work Culturally Competent Care Caregivers Child Preschool Medicine Female Biotechnology Research Article Adult medicine.medical_specialty Adolescent Refugee media_common.quotation_subject Urology MEDLINE Equipment Bioengineering Social sciences Pleasure 03 medical and health sciences Young Adult Pharmacotherapy Drug Therapy medicine Pain Management Humans Aged Pharmacology Medicine and health sciences Health Services Needs and Demand Biology and life sciences business.industry FOS: Engineering and technology Health Care Opioids Cross-Sectional Studies Family medicine Health Care Surveys Quality of Life Medical Devices and Equipment Basic needs business Stress Psychological |
| Zdroj: | PLoS Medicine PLoS Medicine, Vol 17, Iss 3, p e1003011 (2020) Doherty, M, Power, L, Petrova, M, Gunn, S, Powell, R, Coghlan, R, Grant, L, Sutton, B & Khan, F 2020, ' Illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh : A cross-sectional study ', PLoS Medicine, vol. 17, no. 3, pp. e1003011 . https://doi.org/10.1371/journal.pmed.1003011 |
| DOI: | 10.1371/journal.pmed.1003011 |
| Popis: | 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. Megan Doherty and co-workers report on illness, suffering and treatment needs among Rohingya refugees and caregivers in Bangladesh. Author summary Why was this study done? Palliative care and symptom relief have been recognized as essential in humanitarian crises, which by their nature generate a large burden of suffering and mortality. A basic and inexpensive package of essential medicines and supplies can address pain relief and palliative care during humanitarian crises, but the availability of these items during a crisis has not been assessed. There is minimal evidence to guide the implementation of palliative care in humanitarian responses, with few studies describing palliative care needs or programs in these settings. What did the researchers do and find? We conducted a cross-sectional study of individuals with serious illnesses and caregivers to describe the illness-related suffering and need for palliative care in Rohingya refugees in Bangladesh. Many individuals with serious health problems experienced significant pain (62%, n = 96), the pain treatments prescribed were largely ineffective (70%, n = 58), and effective pain treatments were rarely available. Caregivers most commonly assisted with bathing (n = 117, 94%), administering medications (n = 99, 80%), and feeding (n = 98, 79%). Despite having limited training or money, caregivers provided many hours per day of care, which caused sadness, worry, and discrimination. What do these findings mean? In the Rohingya humanitarian crisis, the specific physical, emotional, and social needs of individuals with serious conditions and their caregivers are not being addressed adequately. Efforts to incorporate palliative care must address the barriers to accessing essential medications, supplies, and medical care, including opioid availability. Assessments of palliative care needs during humanitarian crises should be used to direct palliative care priorities and guide the development of effective interventions in these settings. Future research should quantify the occurrence of serious illness-related suffering, evaluate programs designed to alleviate this suffering, and validate published guidelines and recommendations. |
| Databáze: | OpenAIRE |
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