Conference Material > Poster
Doherty M, Richardson K, Lynch-Godrei A, Azad TB, Ferdous L, et al.
MSF Paediatric Days 2022. 2021 November 30; DOI:10.57740/k0d5-c989
Conference Material > Abstract
Nair MM, Kumar P, Mahajan R, Harshana A, Richardson K, et al.
MSF Scientific Days International 2020: Research. 2020 May 20
INTRODUCTION
Effective palliative care requires a multidisciplinary and holistic approach based on the provision of comprehensive care with treatment of pain and physical symptoms, management of psychosocial needs, as well as other non-medical needs. Few studies exist about palliative care in India, particularly in the context of people living with HIV/AIDS. MSF supports an advanced HIV inpatient ward in Bihar, where mortality rates are high. We aimed to explore the lived experiences of palliative care among patients, and their families, with advanced HIV, to understand conceptions of illness, death, and end-of-life care in Bihar, India.
METHODS
We carried out an exploratory, qualitative study using 21 semi-structured in-depth interviews and 1 focus group discussion. Participants included patients living with HIV/AIDS (PLHA), caregivers, relatives of deceased patients who had been treated in a government hospital, and key informants from community-based organizations in Patna, Bihar. Interview data were transcribed verbatim, translated from Hindi or other local languages into English by research assistants, and analysed using NVIVO (QSR International, Victoria, Australia). Two researchers then carried out inductive, thematic analysis of the data. Emergent codes and categories were identified and compared to subsequent areas of inquiry.
ETHICS
This study was approved by the ethics committee of the All India Institute of Medical Sciences, Patna, India, and the MSF Ethics Review Board.
RESULTS
Latent thematic analysis revealed poor understanding of palliative care among advanced HIV patients and their caregivers; the term “palliative care” was not known to PLHA. PLHA and relatives expected active treatment, despite poor prognosis, and believed that dying patients should be provided a separate, private inpatient area. However, patients were able to identify the importance of psychosocial counselling, the desire for a separate dedicated space for terminal patients with social and recreational activities to prevent isolation, and a preference for home-based palliative care wherever possible. Our data showed that relatives of patients played a substantial role in influencing doctors and nurses to avoid divulging the nature of the disease and prognosis directly to patients. There was variation in preferences for open disclosure of prognosis amongst critically ill PLHA and relatives of deceased patients.
CONCLUSION
There is a need to improve palliative care provision for advanced HIV patients in Bihar, who do not typically have access to such services. PLHA should have a separate dedicated area, with adequate psychosocial counselling for patients and families, and regular recreational activities to prevent social isolation.
CONFLICTS OF INTEREST
None declared.
Effective palliative care requires a multidisciplinary and holistic approach based on the provision of comprehensive care with treatment of pain and physical symptoms, management of psychosocial needs, as well as other non-medical needs. Few studies exist about palliative care in India, particularly in the context of people living with HIV/AIDS. MSF supports an advanced HIV inpatient ward in Bihar, where mortality rates are high. We aimed to explore the lived experiences of palliative care among patients, and their families, with advanced HIV, to understand conceptions of illness, death, and end-of-life care in Bihar, India.
METHODS
We carried out an exploratory, qualitative study using 21 semi-structured in-depth interviews and 1 focus group discussion. Participants included patients living with HIV/AIDS (PLHA), caregivers, relatives of deceased patients who had been treated in a government hospital, and key informants from community-based organizations in Patna, Bihar. Interview data were transcribed verbatim, translated from Hindi or other local languages into English by research assistants, and analysed using NVIVO (QSR International, Victoria, Australia). Two researchers then carried out inductive, thematic analysis of the data. Emergent codes and categories were identified and compared to subsequent areas of inquiry.
ETHICS
This study was approved by the ethics committee of the All India Institute of Medical Sciences, Patna, India, and the MSF Ethics Review Board.
RESULTS
Latent thematic analysis revealed poor understanding of palliative care among advanced HIV patients and their caregivers; the term “palliative care” was not known to PLHA. PLHA and relatives expected active treatment, despite poor prognosis, and believed that dying patients should be provided a separate, private inpatient area. However, patients were able to identify the importance of psychosocial counselling, the desire for a separate dedicated space for terminal patients with social and recreational activities to prevent isolation, and a preference for home-based palliative care wherever possible. Our data showed that relatives of patients played a substantial role in influencing doctors and nurses to avoid divulging the nature of the disease and prognosis directly to patients. There was variation in preferences for open disclosure of prognosis amongst critically ill PLHA and relatives of deceased patients.
CONCLUSION
There is a need to improve palliative care provision for advanced HIV patients in Bihar, who do not typically have access to such services. PLHA should have a separate dedicated area, with adequate psychosocial counselling for patients and families, and regular recreational activities to prevent social isolation.
CONFLICTS OF INTEREST
None declared.
Journal Article > ResearchFull Text
BMJ Open. 2020 October 5; Volume 10 (Issue 10); e036179.; DOI:10.1136/bmjopen-2019-036179
Nair MM, Kumar P, Mahajan R, Harshana A, Richardson K, et al.
BMJ Open. 2020 October 5; Volume 10 (Issue 10); e036179.; DOI:10.1136/bmjopen-2019-036179
OBJECTIVES
This study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.
DESIGN
This was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.
SETTINGS
All interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.
PARTICIPANTS
We purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.
RESULTS
Critically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as 'palliative care' and 'end-of-life care'. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients' deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.
CONCLUSIONS
Despite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients' preferences.
This study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.
DESIGN
This was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.
SETTINGS
All interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.
PARTICIPANTS
We purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.
RESULTS
Critically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as 'palliative care' and 'end-of-life care'. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients' deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.
CONCLUSIONS
Despite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients' preferences.
Conference Material > Abstract
Yantzi R, Hadiuzzaman M, Gupta PS, Lamrous A, Richardson K, et al.
MSF Paediatric Days 2022. 2022 November 26; 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 > Poster
Blatman Z, Doherty M, Richardson K, Yantzi R, Rayala S
MSF Paediatric Days 2024. 2024 May 3; DOI:10.57740/TbIQJgT
Conference Material > Poster
Verástegu C, Yantzi R, de la Osada A, Bin Ayub J, Abdullah Al Imran J, et al.
MSF Paediatric Days 2022. 2022 November 30; DOI:10.57740/2dt3-vf97
Conference Material > Poster
Doherty M, Richardson K, Luraschi D
MSF Paediatric Days 2022. 2022 November 30; DOI:10.57740/b9zg-kp07
Journal Article > ResearchFull Text
PLOS One. 2023 July 20; Volume 18 (Issue 7); e0288938.; DOI:10.1371/journal.pone.0288938
Yantzi R, Hadiuzzaman M, Sen Gupta PK, Lamrous A, Richardson K, et al.
PLOS One. 2023 July 20; Volume 18 (Issue 7); e0288938.; DOI:10.1371/journal.pone.0288938
INTRODUCTION
The Médecins Sans Frontières (MSF) Goyalmara Hospital in Cox’s Bazar, Bangladesh is a referral centre offering the highest level of care available in the Rohingya camps for pediatrics and neonatology. Efforts are underway to integrate pediatric palliative care due to high mortality and medical complexity of patients, yet little is known about the experiences of staff delivering palliative and end-of-life care. The purpose of this study was to understand the moral experiences of MSF staff to inform program planning and implementation.
METHODS
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 documents including MSF clinical guidelines, admission and referral criteria, reports, and training materials. Data analysis followed a modified version of the Qualitative Analysis Guide of Leuven and data were coded using NVivo software.
RESULTS
The prevailing understanding of pediatric palliative care among national and international staff was care that prioritized comfort for infants and children who were not expected to survive. Staff’s views were informed by their sense of obligation to do no harm, to do their best on behalf of their patients, and religious beliefs about God’s role in determining the child’s outcome. The authority of doctors, international staff, as well as protocols and guidelines shaped palliative care decision-making. Staff saw clinical guidelines as valuable resources that supported a consistent approach to care over time, while others were concerned that palliative care guidelines were rigidly applied.
CONCLUSION
When integrating palliative care into humanitarian programs, it is important to emphasize the active role of palliative care in reducing suffering. Advocacy for access to the highest level of care possible should continue alongside palliative care integration. While palliative care guidelines are valuable, it is essential to encourage open discussion of staff concerns and adapt care plans based on the family’s needs and preferences.
The Médecins Sans Frontières (MSF) Goyalmara Hospital in Cox’s Bazar, Bangladesh is a referral centre offering the highest level of care available in the Rohingya camps for pediatrics and neonatology. Efforts are underway to integrate pediatric palliative care due to high mortality and medical complexity of patients, yet little is known about the experiences of staff delivering palliative and end-of-life care. The purpose of this study was to understand the moral experiences of MSF staff to inform program planning and implementation.
METHODS
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 documents including MSF clinical guidelines, admission and referral criteria, reports, and training materials. Data analysis followed a modified version of the Qualitative Analysis Guide of Leuven and data were coded using NVivo software.
RESULTS
The prevailing understanding of pediatric palliative care among national and international staff was care that prioritized comfort for infants and children who were not expected to survive. Staff’s views were informed by their sense of obligation to do no harm, to do their best on behalf of their patients, and religious beliefs about God’s role in determining the child’s outcome. The authority of doctors, international staff, as well as protocols and guidelines shaped palliative care decision-making. Staff saw clinical guidelines as valuable resources that supported a consistent approach to care over time, while others were concerned that palliative care guidelines were rigidly applied.
CONCLUSION
When integrating palliative care into humanitarian programs, it is important to emphasize the active role of palliative care in reducing suffering. Advocacy for access to the highest level of care possible should continue alongside palliative care integration. While palliative care guidelines are valuable, it is essential to encourage open discussion of staff concerns and adapt care plans based on the family’s needs and preferences.
Conference Material > Poster
Das E, Doherty M, Richardson K, Nafula E, Ali Z
MSF Paediatric Days 2024. 2024 May 3; DOI:10.57740/g9Pfdhmt
Journal Article > ResearchAbstract Only
Prehosp Disaster Med. 2023 May 1; 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. 2023 May 1; 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.