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Illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh: A cross-sectional study [1]

['Megan Doherty', 'Department Of Pediatrics', 'Children S Hospital Of Eastern Ontario', 'Ottawa', 'Ontario', 'Faculty Of Medicine', 'University Of Ottawa', 'World Child Cancer', 'London', 'United Kingdom']

Date: 2022-12 

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.

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.

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.

This study aims to describe the need for palliative care and symptom relief during an unfolding humanitarian crisis: the Rohingya refugee crisis in Cox’s Bazar, Bangladesh. Specifically, we sought to describe the burden of serious illness-related suffering, focusing on physical, social, and emotional suffering, and the availability of the essential package components.

Ensuring patients can obtain strong pain medications is essential to reducing serious illness-related suffering, yet in humanitarian settings, this may pose significant challenges since national regulatory barriers can restrict the importation of opioids with humanitarian emergency supplies [ 8 ]. Many countries have opioid regulations that focus on reducing the risks of nonmedical use, but fail to ensure appropriate access for medical needs [ 8 , 9 ]. The World Health Organization (WHO) has published guidelines providing practical instructions on improving opioid availability while ensuring safe storage and dispensing [ 10 ]. International humanitarian organizations are beginning to acknowledge the need for improved pain management in the emergency setting, but there are very few examples reported in the literature of efforts to incorporate key policy lessons [ 1 ].

Minimal evidence exists to guide humanitarian organizations in the design, development, and implementation of palliative care services [ 4 , 5 ]. A 2017 systematic review of humanitarian health programs that included palliative care or enhanced pain management identified only one publication fulfilling the selection criteria: a study of a pain treatment program for amputees [ 6 ]. Although palliative care projects are taking place in several other humanitarian situations, these have been accompanied by very little formal research [ 7 ]. An “essential package” of inexpensive and relatively simple interventions that can deliver effective palliative care and alleviate serious illness-related suffering in a variety of settings has been proposed [ 2 ]. Serious illness-related suffering is defined as suffering associated with an illness or injury that “compromises physical, social and emotional functioning” and requires medical intervention to be relieved [ 2 ]. To address the significant burden of serious illness-related suffering in humanitarian settings, evidence on palliative care priorities and effective interventions is urgently needed.

Humanitarian crises, by their nature, generate a large burden of suffering and mortality, necessitating palliative care [ 1 ]. A recent Lancet Commission report on pain relief and palliative care recognized palliative care as “an essential component of any response to humanitarian emergencies and crises” [ 2 ]. Despite the growing recognition of the need for palliative care in humanitarian settings, its provision has largely been neglected, due to a focus on saving lives [ 3 ]. In humanitarian settings, the need for palliative care and symptom relief often extends beyond individuals with life-limiting conditions. Illness-related suffering may occur for many individuals with serious acute or non-life-threatening conditions due to limited access to services to prevent, diagnose, or treat disease and limited social support systems [ 2 ]. The role of palliative care in a humanitarian crisis should be to respond to the specific needs of the populations experiencing the crisis.

Methods

The study was approved by the Civil Surgeon for Cox’s Bazar District and by the Research Ethics Board of the Children’s Hospital of Eastern Ontario, Canada (Study number: 18/54X). The STROBE statement for our paper can be found in S1 STROBE Checklist. Written informed consent was obtained from all participants. All analyses were non-prespecified. The original funding proposal can be found in S1 Text.

Recruitment and sampling Individuals with serious health problems and caregivers for such individuals were invited to participate. In determining which patients (i.e., individuals with serious health problems) to include, we used WHO guidelines for palliative care in humanitarian settings, which suggest that palliative care is appropriate for those with serious health problems, including life-limiting conditions as well as non-life-limiting conditions, such as trauma, burns, paraplegia, quadriplegia, brain injuries, and congenital anomalies where significant suffering may occur [4]. Participants were identified at the community level. Interviewers spoke to individuals in the refugee camp community and went from house to house to identify individuals requiring palliative care or symptom relief and their caregivers. Once identified, these individuals were approached about their interest to learn about the study; if individuals expressed interest, then the interviewer explained the goals and process of the study, responded to any questions, and then asked if the individual would be willing to participate. For individuals whose diagnosis was uncertain, interviewers reviewed the cases with the study coordinators (MD and FK) to determine if the individual should be included as having a serious health problem, prior to conducting the interview. Patients who had significant impairments in movement, muscle tone, and/or balance were categorized as having a significant physical disability, and the breadth of this category was due to a lack of clarity from individuals about their exact diagnosis or the cause of their disability and a lack of access to diagnostic healthcare services. For children (0–17 years), a parent or the primary adult caregiver was approached for consent and completed the interview as a source of proxy information. Participants were identified through convenience sampling, and sample size was determined by the maximum number of eligible participants that could be consented and interviewed during the data collection period. For all pharmacies that could be identified in the defined locations for the study, we interviewed a pharmacy representative about the availability of essential palliative care medications and supplies.

Design and content of interviews The interview guide was developed through a literature review that identified key themes from previous assessments of palliative care in low-and middle-income countries (LMICs) and from the 2017 draft Sphere Handbook [5,11,12]. Six of the study authors (MD, MP, RP, LG, BS, and FK) and 3 additional individuals with expertise in humanitarian medicine, palliative care, and noncommunicable diseases provided feedback on the validity and comprehensibility of draft interview questions, which led to the development of a pilot interview guide. This pilot guide was tested with 10 Rohingya interviewers from the refugee camps and 20 Rohingya individuals (11 with serious health problems and 9 caregivers). Modifications were made to improve the clarity of questions and response options to reflect the specificities of the Rohingya refugees’ experiences and culture. The pharmacy representative interview included questions about medications and supply items included in the essential package [2]. Demographic information about individuals’ age, sex, household size, education, and occupation was collected. Participants with serious health problems were asked to report on the characteristics of their pain and other symptoms, including severity, and treatments and their efficacy. Participants with serious health problems and caregivers were also asked about their needs for medications and medical supplies, as well as their basic needs for items such as food, shelter, and money. Participants with serious health problems were asked about recent healthcare experiences and the barriers to accessing care, medicines, and medical supplies. Individuals were informed that they could skip any questions that they did not want to answer. This, as well as the lack of relevance of certain items, led to variable sample size for responses across certain interview items. In all such cases, the sample size is noted in the text and/or tables.

Interviewer training and linguistic adaptation Two co-authors (MD and FK), who had previous experience with conducting similar studies in Bangladesh, recruited and trained 10 Rohingya-speaking interviewers to conduct structured interviews for this study. The interviewers were identified through a partnership with a local health non-governmental organization (NGO) working in the refugee camps (OBAT Helpers) that had previously employed the majority of these individuals in various health promotion and/or translator roles for programs in the refugee camps. All interviewers had completed secondary school and were fluent in both written and spoken English and in the Rohingya language (spoken only, as there is no widely accepted written form of Rohingya). All interviewers were of Rohingya ethnicity, and the majority (90%) had been living in the refugee camps for more than 5 years, having arrived during previous waves of refugee movement from Myanmar. Interviewer training was conducted in English and consisted of 2 days of theoretical and practical in-person training that included didactic teaching and practical examples related to research ethics and informed consent, the goals of the study, and key concepts related to the study (palliative care, serious health problems, cancer, HIV/AIDS, medications, medical equipment, and symptoms). During the training, the interviewers reviewed each question in the interview guide with the trainers, discussed the meaning of the question and the response options, and provided suggestions about cultural or other adaptations that would improve the clarity of the interview guide. The interviewers then agreed upon a single translation of each interview question into Rohingya, after group discussion. During the practical portion of the training, interviewers conducted practice interviews in pairs, with observation and coaching by the trainers, who provided feedback about interview technique and clarified the interview guide questions and response options. During the final phase of training, interviewers conducted interviews in the refugee camps, under the same conditions as those in the actual study, with observation by the 2 trainers, to ensure fidelity to the interview guide. The interviews were conducted over a 5-day period (November 20–24, 2017) immediately following training. Interviews typically took 30–45 minutes.

Setting Between August and November 2017, violence towards Rohingya people in Myanmar forced 687,000 people into Bangladesh, where an estimated 213,000 Rohingya refugees were already living [13]. Since arriving, the majority are living in makeshift accommodations, and it is estimated that 55% of the newly arrived are children [13]. Interviews with patients and caregivers were conducted among Rohingya refugees living in the main refugee settlement areas of Kutupalong, Jamtoli, Tenkhali, and Balukhali in the Cox’s Bazar District of Bangladesh between November 20 and 24, 2017. Retail pharmacy representatives in the refugee camp area, the nearest town center (5.5 km from the entrance to Kutupalong refugee camp), and the nearest government health complex (7.0 km from the Kutupalong camp entrance) were also interviewed. There are many NGO medical clinics (with basic outpatient facilities) and hospitals (inpatient and outpatient facilities) located within the Rohingya settlements or in close proximity, where basic and advanced-level medical and surgical care is available. Additionally, refugees may visit Bangladesh government health facilities, with the nearest primary-level government facility 7.0 km from the Kutupalong camp and a tertiary facility 37 km away.

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[1] Url: https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1003011

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