Journal Article > ResearchFull Text
Lancet Gastroenterol Hepatol. 1 April 2025; Online ahead of print; DOI:10.1016/S2468-1253(25)00094-9
Schramm B, Ashakin KA, Firuz W, Hadiuzzaman M, Ben-Farhat J, et al.
Lancet Gastroenterol Hepatol. 1 April 2025; Online ahead of print; DOI:10.1016/S2468-1253(25)00094-9
Conference Material > Poster
Ashakin KA, Hadiuzzaman M, Firuz W, Rahman A, Ben-Farhat J, et al.
Epicentre Scientific Day 2024. 23 May 2024
Journal Article > ResearchAbstract Only
Prehosp Disaster Med. 1 May 2023; Volume 38 (Issue S1); s109-s109.; DOI:10.1017/S1049023X23002960
Yantzi R, Hadiuzzaman M, Gupta PS, Lamrous A, Richardson K, et al.
Prehosp Disaster Med. 1 May 2023; Volume 38 (Issue S1); s109-s109.; DOI:10.1017/S1049023X23002960
INTRODUCTION
919,000 Rohingya refugees live in overcrowded camps in Cox’s Bazar, Bangladesh after fleeing violence in Myanmar. The Médecins Sans Frontières (MSF) Goyalmara Hospital offers the highest level of pediatric and neonatal care serving the Rohingya refugees and palliative care is gradually being integrated due to high mortality and medical complexity of patients. The purpose of this study was to understand the moral experiences of staff involved in providing palliative care to inform program implementation at Goyalmara Hospital and in other humanitarian contexts.
METHOD
This focused ethnography was conducted between March-August 2021 at Goyalmara Hospital. Data collection involved participant-observation, individual interviews (22), focus group discussions (5), and analysis of protocols and other documents. Interviews and focus groups were audio-recorded, translated, and transcribed. A coding scheme was developed, and data coded using NVivo 11.
RESULTS
A key finding of this study was the important yet contested role of clinical guidelines and policies in palliative care related decision-making which was shaped by the authority and impermanent presence of international staff in the project. Staff saw clinical guidelines as a valuable resource that supported a consistent approach to care over time, and some locally hired staff used clinical guidelines as a tool to support their point of view during care planning discussions with international staff. Others felt that palliative care guidelines and other policies were inappropriately or rigidly applied, particularly surrounding decisions to refer (or not refer) patients to a higher level of care, or to discontinue certain medical treatments at end of life.
CONCLUSION
MSF staff experienced tension between the need for clarity and consistency, and the need to tailor guidelines to the context, patient, and family. Open discussion of staff concerns may alleviate moral distress and alert teams to areas where advocacy, staff psycho-social support, training, or clinical mentoring are needed.
919,000 Rohingya refugees live in overcrowded camps in Cox’s Bazar, Bangladesh after fleeing violence in Myanmar. The Médecins Sans Frontières (MSF) Goyalmara Hospital offers the highest level of pediatric and neonatal care serving the Rohingya refugees and palliative care is gradually being integrated due to high mortality and medical complexity of patients. The purpose of this study was to understand the moral experiences of staff involved in providing palliative care to inform program implementation at Goyalmara Hospital and in other humanitarian contexts.
METHOD
This focused ethnography was conducted between March-August 2021 at Goyalmara Hospital. Data collection involved participant-observation, individual interviews (22), focus group discussions (5), and analysis of protocols and other documents. Interviews and focus groups were audio-recorded, translated, and transcribed. A coding scheme was developed, and data coded using NVivo 11.
RESULTS
A key finding of this study was the important yet contested role of clinical guidelines and policies in palliative care related decision-making which was shaped by the authority and impermanent presence of international staff in the project. Staff saw clinical guidelines as a valuable resource that supported a consistent approach to care over time, and some locally hired staff used clinical guidelines as a tool to support their point of view during care planning discussions with international staff. Others felt that palliative care guidelines and other policies were inappropriately or rigidly applied, particularly surrounding decisions to refer (or not refer) patients to a higher level of care, or to discontinue certain medical treatments at end of life.
CONCLUSION
MSF staff experienced tension between the need for clarity and consistency, and the need to tailor guidelines to the context, patient, and family. Open discussion of staff concerns may alleviate moral distress and alert teams to areas where advocacy, staff psycho-social support, training, or clinical mentoring are needed.
Conference Material > Slide Presentation
Yantzi R, Hadiuzzaman M, Gupta PS, Lamrous A, Richardson K, et al.
MSF Paediatric Days 2022. 1 December 2022; DOI:10.57740/tqgy-1x26
Conference Material > Abstract
Yantzi R, Hadiuzzaman M, Gupta PS, Lamrous A, Richardson K, et al.
MSF Paediatric Days 2022. 26 November 2022; DOI:10.57740/2rds-ya16
BACKGROUND AND AIMS
MSF Goyalmara Hospital in Cox’s Bazar, Bangladesh, offers the highest level of paediatric and neonatal care serving the Rohingya refugee camps. Efforts are underway to integrate palliative care due to high mortality and medical complexity of patients, yet little is known about the experience of staff delivering palliative and end-of-life care.
METHODS
This focused ethnography was conducted between March and August 2021 at Goyalmara Hospital. Data collection involved participant observation, individual interviews with locally-hired (17) and international staff (5), focus group discussions with locally-hired staff (5), and analysis of protocols and other documents. A coding scheme was developed, and data coded using NVivo 11.
RESULTS
Staff perceived gaining the trust of caregivers (parents, grandparents) to be an essential step to providing palliative care and a source of professional fulfillment. Misunderstanding and mistrust were morally distressing to staff, and they experienced intense guilt when they believed that misunderstandings contributed to children’s deaths. Efforts to ensure caregiver understanding were complicated by language and cultural differences between staff and caregivers. Staff felt an obligation to suppress their emotional responses to death and dying, even though they acknowledged that this risked caregivers perceiving them as uncaring. Tensions emerged as some staff passed moral judgement on caregivers who they felt were making the ‘wrong decision’, or who brought a child to hospital too late to save their life. Likewise, staff perceived that caregivers did not always believe the staff were acting in their child’s best interests. Other staff were able to empathise with the impacts of grief and systematic exclusion on caregivers’ reactions and decision-making.
CONCLUSIONS
Positive therapeutic relationships with caregivers may alleviate an important source of moral distress among staff. Access to translation services, communication and grief resilience training, and appreciating psychological impacts of systematic healthcare exclusion on communities may mitigate this distress.
MSF Goyalmara Hospital in Cox’s Bazar, Bangladesh, offers the highest level of paediatric and neonatal care serving the Rohingya refugee camps. Efforts are underway to integrate palliative care due to high mortality and medical complexity of patients, yet little is known about the experience of staff delivering palliative and end-of-life care.
METHODS
This focused ethnography was conducted between March and August 2021 at Goyalmara Hospital. Data collection involved participant observation, individual interviews with locally-hired (17) and international staff (5), focus group discussions with locally-hired staff (5), and analysis of protocols and other documents. A coding scheme was developed, and data coded using NVivo 11.
RESULTS
Staff perceived gaining the trust of caregivers (parents, grandparents) to be an essential step to providing palliative care and a source of professional fulfillment. Misunderstanding and mistrust were morally distressing to staff, and they experienced intense guilt when they believed that misunderstandings contributed to children’s deaths. Efforts to ensure caregiver understanding were complicated by language and cultural differences between staff and caregivers. Staff felt an obligation to suppress their emotional responses to death and dying, even though they acknowledged that this risked caregivers perceiving them as uncaring. Tensions emerged as some staff passed moral judgement on caregivers who they felt were making the ‘wrong decision’, or who brought a child to hospital too late to save their life. Likewise, staff perceived that caregivers did not always believe the staff were acting in their child’s best interests. Other staff were able to empathise with the impacts of grief and systematic exclusion on caregivers’ reactions and decision-making.
CONCLUSIONS
Positive therapeutic relationships with caregivers may alleviate an important source of moral distress among staff. Access to translation services, communication and grief resilience training, and appreciating psychological impacts of systematic healthcare exclusion on communities may mitigate this distress.
Conference Material > Abstract
Hadiuzzaman M, Yantzi R, van den Boogaard W, Lim SY, Gupta PS, et al.
MSF Scientific Days International 2022. 12 May 2022; DOI:10.57740/2hjs-zc19
INTRODUCTION
Maternal health indicators remain unacceptably poor within the densely populated Rohingya refugee camps in Cox’s Bazar, Bangladesh. With a high prevalence of home births, we sought to explore perceptions, experiences, and expectations around delivery care of women of reproductive age. We also examined the potential roles of family and key community members within Camp 22, a relatively isolated camp with 23,000 refugees where MSF is the only provider of facility-based maternity care.
METHODS
In 2021, we selected 45 participants from Camp 22 through purposive and snowball sampling for in-depth interviews. Participants included 36 Rohingya women and their family members, three traditional birth attendants (TBA’s) and six community and religious leaders. Interviews were recorded, translated and transcribed into English by trained staff fluent in Rohingya. Thematic-content analysis was performed, whereby codes and emerging themes were identified.
ETHICS
This study was approved by the MSF Ethics Review Board (ERB) and by the ERB of Bangladesh University of Health Sciences.
RESULTS
Findings showed that delivery choices were made as a family, with husband and parents-in-law being primary decision makers. An uncomplicated birth was not perceived as requiring facility-based assistance; many women preferred to give birth at home assisted by TBA’s, family, or local healers, due to placing greater trust in their own community. Lack of security and transport were crucial determinants in repudiating facility-based care at night. Concerns about male staff and being undressed during facility-based births, as well as the possibility of onward referrals should surgery or episiotomies be required, drove hesitancy. Separation from family and children added more anxiety. Lack of understanding by facility staff towards Rohingya birthing practices and beliefs, and the Rohingya’s unfamiliarity with formally-trained midwives and medical procedures, featured heavily in decisions for home births. Factors such as utilising birthing ropes and guaranteed privacy at home were key influencers for choosing home births. Additionally, perceived inexperience of midwives and lack of autonomy while in the facility, were other common reasons for apprehension.
CONCLUSION
This study emphasizes community trust as a factor in collective decision-making regarding birth choices. Trust was higher in TBA’s than in formally-trained midwives and this negatively affected perceptions regarding competence. Perceptions may also be affected by rapid midwife turnover, a factor endemic to non-governmental organizations working in Cox’s Bazar. The persistent gap in cultural understanding and adaptation by facility-based staff, even after three years of presence, suggests the need for a more iterative, inclusive and reflective approach, with community engagement strategies founded on beneficiaries own explicitly stated needs, beliefs and practices.
CONFLICTS OF INTEREST
None declared
Maternal health indicators remain unacceptably poor within the densely populated Rohingya refugee camps in Cox’s Bazar, Bangladesh. With a high prevalence of home births, we sought to explore perceptions, experiences, and expectations around delivery care of women of reproductive age. We also examined the potential roles of family and key community members within Camp 22, a relatively isolated camp with 23,000 refugees where MSF is the only provider of facility-based maternity care.
METHODS
In 2021, we selected 45 participants from Camp 22 through purposive and snowball sampling for in-depth interviews. Participants included 36 Rohingya women and their family members, three traditional birth attendants (TBA’s) and six community and religious leaders. Interviews were recorded, translated and transcribed into English by trained staff fluent in Rohingya. Thematic-content analysis was performed, whereby codes and emerging themes were identified.
ETHICS
This study was approved by the MSF Ethics Review Board (ERB) and by the ERB of Bangladesh University of Health Sciences.
RESULTS
Findings showed that delivery choices were made as a family, with husband and parents-in-law being primary decision makers. An uncomplicated birth was not perceived as requiring facility-based assistance; many women preferred to give birth at home assisted by TBA’s, family, or local healers, due to placing greater trust in their own community. Lack of security and transport were crucial determinants in repudiating facility-based care at night. Concerns about male staff and being undressed during facility-based births, as well as the possibility of onward referrals should surgery or episiotomies be required, drove hesitancy. Separation from family and children added more anxiety. Lack of understanding by facility staff towards Rohingya birthing practices and beliefs, and the Rohingya’s unfamiliarity with formally-trained midwives and medical procedures, featured heavily in decisions for home births. Factors such as utilising birthing ropes and guaranteed privacy at home were key influencers for choosing home births. Additionally, perceived inexperience of midwives and lack of autonomy while in the facility, were other common reasons for apprehension.
CONCLUSION
This study emphasizes community trust as a factor in collective decision-making regarding birth choices. Trust was higher in TBA’s than in formally-trained midwives and this negatively affected perceptions regarding competence. Perceptions may also be affected by rapid midwife turnover, a factor endemic to non-governmental organizations working in Cox’s Bazar. The persistent gap in cultural understanding and adaptation by facility-based staff, even after three years of presence, suggests the need for a more iterative, inclusive and reflective approach, with community engagement strategies founded on beneficiaries own explicitly stated needs, beliefs and practices.
CONFLICTS OF INTEREST
None declared
Conference Material > Abstract
Yantzi R, Hadiuzzaman M, Gupta PS, Lamrous A, Pringle J, et al.
MSF Scientific Days International 2022. 12 May 2022; DOI:10.57740/6gzd-jz18
INTRODUCTION
855,000 Rohingya refugees live in overcrowded camps in Cox’s Bazar, Bangladesh where MSF operates Goyalmara Hospital, the only dedicated pediatric and neonatal hospital serving the camps. Palliative care services have been prioritized due to the medical complexity of patients. While palliative care is increasingly recognized as an important component of humanitarian interventions, little is known about the experience
of and impact on staff delivering end-of-life care.
METHODS
This focused ethnography was conducted between March--August 2021 at Goyalmara Hospital. Data collection involved participant-observation, individual interviews with national (17) and international staff (five), focus group discussions with national staff (five), and analysis of protocols and other documents. A coding scheme was developed using transcript narrative summaries to identify key concepts and constant comparison techniques between and within data sources. Data were coded using NVivo 11.
ETHICS
This study was approved by the MSF Ethics Review Board (ERB) and by the ERB of Bangladesh University of Health Sciences.
RESULTS
Moral experiences of staff were influenced by perceived duty of ensuring every effort was made on behalf of patients; ambiguity around the concepts of palliative and end-of-life care, and the perception of palliative care as withdrawal of treatment when “we have nothing to do”. Staff reported coping with frequent deaths by reassuring themselves that they had done their best, yet expressed frustration that MSF could not or would not refer patients for higher-level treatment that they believed was available, and over the lack of transparency of such policies. A perception that further referral for Bangladeshi children was possible in contrast to Rohingya led to a troubling acceptance by staff of discriminatory care pathways. The absence of home-based palliative care, communication barriers, and inconsistent access to morphine, contributed to a sense of powerlessness. Palliative care decision-making was led by expatriate doctors. Although nurses felt more engaged compared with previous roles, several doctors felt uncomfortable with decisions and unable to contradict expatriates. Revolving expatriates with different decision-making approaches undermined national staff confidence. Protocols were seen by all to promote consistency and were utilised by national staff to justify decisions when there was disagreement with expatriates. Non-medical staff were observed to play an important role in sharing difficult news with families but they reported feeling unprepared for this responsibility.
CONCLUSION
Ensuring clarity and transparency of referral policies and ceiling of-care criteria is needed to support staff coping mechanisms and to ensure that palliative care is not perceived as a substitute for life-saving care. Non-medical staff require adequate training and support if they are involved with communicating end-of-life decisions to families.
CONFLICTS OF INTEREST
None declared.
855,000 Rohingya refugees live in overcrowded camps in Cox’s Bazar, Bangladesh where MSF operates Goyalmara Hospital, the only dedicated pediatric and neonatal hospital serving the camps. Palliative care services have been prioritized due to the medical complexity of patients. While palliative care is increasingly recognized as an important component of humanitarian interventions, little is known about the experience
of and impact on staff delivering end-of-life care.
METHODS
This focused ethnography was conducted between March--August 2021 at Goyalmara Hospital. Data collection involved participant-observation, individual interviews with national (17) and international staff (five), focus group discussions with national staff (five), and analysis of protocols and other documents. A coding scheme was developed using transcript narrative summaries to identify key concepts and constant comparison techniques between and within data sources. Data were coded using NVivo 11.
ETHICS
This study was approved by the MSF Ethics Review Board (ERB) and by the ERB of Bangladesh University of Health Sciences.
RESULTS
Moral experiences of staff were influenced by perceived duty of ensuring every effort was made on behalf of patients; ambiguity around the concepts of palliative and end-of-life care, and the perception of palliative care as withdrawal of treatment when “we have nothing to do”. Staff reported coping with frequent deaths by reassuring themselves that they had done their best, yet expressed frustration that MSF could not or would not refer patients for higher-level treatment that they believed was available, and over the lack of transparency of such policies. A perception that further referral for Bangladeshi children was possible in contrast to Rohingya led to a troubling acceptance by staff of discriminatory care pathways. The absence of home-based palliative care, communication barriers, and inconsistent access to morphine, contributed to a sense of powerlessness. Palliative care decision-making was led by expatriate doctors. Although nurses felt more engaged compared with previous roles, several doctors felt uncomfortable with decisions and unable to contradict expatriates. Revolving expatriates with different decision-making approaches undermined national staff confidence. Protocols were seen by all to promote consistency and were utilised by national staff to justify decisions when there was disagreement with expatriates. Non-medical staff were observed to play an important role in sharing difficult news with families but they reported feeling unprepared for this responsibility.
CONCLUSION
Ensuring clarity and transparency of referral policies and ceiling of-care criteria is needed to support staff coping mechanisms and to ensure that palliative care is not perceived as a substitute for life-saving care. Non-medical staff require adequate training and support if they are involved with communicating end-of-life decisions to families.
CONFLICTS OF INTEREST
None declared.
Conference Material > Slide Presentation
Hadiuzzaman M, Yantzi R, van den Boogaard W, Lim SY, Gupta PS, et al.
MSF Scientific Days International 2022. 12 May 2022; DOI:10.57740/qwgn-be73
Conference Material > Slide Presentation
Yantzi R, Hadiuzzaman M, Gupta PS, Lamrous A, Pringle J, et al.
MSF Scientific Days International 2022. 12 May 2022; DOI:10.57740/rbj5-y139