Partnership to ensure the sustainability of a public health palliative care project in Bangladesh through community theatre

Lead Research Organisation: University of Sussex
Department Name: Brighton and Sussex Medical School

Abstract

Palliative care is essentially care for the dying. While access to palliative care has recently been acknowledged as a human right, providing palliative care has also been recognized as a global health challenge. Almost eighty per cent of adults who could benefit from palliative care are currently living in low and middle-income countries and do not have access to the levels of palliative care provision expected in most developed countries. In this context of global disparity in the framing and practice of palliative care, the authors argue that the quest for a global health system offering universal health coverage should include palliative care as a fundamental goal. Public health palliative care - the idea that care for terminally ill people should be returned to communities - has gained global interest. The community development model which we intend to initiate is based on the traditions and practice of community-based theatre.

The current map of world palliative care development shows Bangladesh as being in category 3a, which means that isolated palliative care services and training provision exist. A recent situation analysis revealed that although Bangladesh has approximately 600,000 incurable patients at any point in time, the country only has comprehensive palliative care programs, all of which are based in the capital city of Dhaka. These programmes served less than 1500 patients in 2013. In the urban slums of Bangladesh, poverty makes the impact of life-limiting conditions devastating to family and community members. Inspired by other community-driven, public health approaches to palliative care, the Centre for Palliative Care (CPC) of the BSM Medical University (BSMMU) initiated a pilot project in 2015 to provide palliative care in urban slums in Dhaka. A recent evaluation of the slum based community palliative care project found that although the patients receiving palliative care are satisfied with the project activities, the involvement of the broader slum community with the project is very limited. This was identified as a major threat to the sustainability of the slum project. Community participation in public health is crucial in order to ensure mobilization of greater resources, and greater empowerment of the community.

We aim to develop an innovative boundary-crossing interdisciplinary partnership to provide support to the sustainability of the urban slum palliative care project in Bangladesh, by developing a culturally appropriate and scientifically sound strategy for enhancing public engagement through 'Community theatre'. Community theatre is recognised as an effective way of engaging community members in continuous reflective activities and aesthetic practices to help address and reflect upon community concerns. A script will be developed for a community theatre, based on an ethnographic exploration of local social and cultural understandings of death, dying and end of life care practices. The script will be performed by members of the slum community, facilitated by the Community Theatre Unit of BRAC, the largest Non-Government Development Organization in Bangladesh. We will then appraise the performances. The processes involved in this pilot activity will be documented and filmed, and these recordings will later be used to assess the learning outcomes as well as to develop a community engagement strategy in public health palliative care through art.

Establishing this partnership will provide a unique opportunity to researchers and practitioners of medicine, humanities, art and development, who otherwise do not work together in Bangladesh, to interact and generate new insight on public health palliative care as well as develop interdisciplinary research capacity. This experience of partnership will form the basis for subsequent funding applications to generate evidence on robust and culturally-sensitive public health palliative care for resource-poor settings in Bangladesh and beyond.

Planned Impact

Collaboration
This proposed project will lay the foundation for a vigorous research network and partnership between academic and non-academic stakeholders from the UK and Bangladesh. The project will identify pathways to sustainability by developing a community engagement strategy in public health palliative care in Bangladesh through use of popular theatre by bringing together expertise from palliative medicine, public health, anthropology, community development, popular culture and art. The partnership will attract medical, humanities and art researchers into new and exciting areas of enquiry on public health palliative care and last beyond the life of the project to develop a critical mass of excellence for interdisciplinary research in this field in Bangladesh and beyond. This will generate reciprocal benefits through integrating an understanding of different disciplines into challenges of public health palliative care. In the long term, this project will mark the start of building a critical mass of research for follow-on funding and sustained research and implementation to community based palliative care.

Project sustainability
The public engagement strategy developed through this project's community theatre intervention exercise will directly benefit the clients and their carers of the slum based palliative care project by enhancing its community engagement and providing means to ensure sustainability. The evaluation of the urban slum based public health palliative care project run by BSM Medical University, Bangladesh, already done by the principal applicant of this proposal revealed a lack of community engagement and this was identified as a threat to the BSMMU project's sustainability.

Capacity-Building
A further challenge in Bangladesh is that public health palliative care is practiced through often disconnected practitioners and with little input from the research communities. This collaborative project will build interdisciplinary research capacity between practitioners of medicine, humanities, art and community development practitioners and scholars. Bangladeshi partners will learn from UK experts about ethnography, public and informal pedagogy, social and medical aspects of palliative medicine, wellbeing of community in uneven development. On the other hand UK researchers will learn about the local social, cultural and research contexts of Bangladesh.

Recognition
This project will stimulate interdisciplinary working in a low income country and bring palliative care research to the forefront of health research in Bangladesh. In particular, this project will extend the knowledge base of public health and art in the field of palliative medicine.

This project will facilitate for the first time a collaboration between two major institutions of Bangladesh, namely BRAC, the largest Non-Governmental development organization and BSM Medical University, the only medical university of Bangladesh. BSM Medical University has particular influence in health policy of the country thus can influence in bringing palliative care research at the forefront of the research landscape in Bangladesh. BSMMU will benefit by learning about community development issues from BRAC, and in return BRAC will learn from BSMMU about public health palliative care, which may encourage BRAC to recognise end of life issues and to incorporate them in its portfolio of activities.

The outputs of this project will include report of the ethnographic exploratory research, the co-produced community theatre, results of rapid appraisal of the performance and its video recording, a process documentation report of the entire activities in relation to community theatre and a strategy for community engagement in public health palliative care through community theatre. We will also have understating what would be required to extend this strategy to other areas of healthcare in resource poor setting is Bangladesh and beyond.

Publications

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Related Projects

Project Reference Relationship Related To Start End Award Value
AH/R005923/1 01/11/2017 31/12/2017 £180,706
AH/R005923/2 Transfer AH/R005923/1 01/01/2018 31/07/2019 £164,470
 
Title Community Theatre, Interactive Graffiti and Documentary film 
Description A community theatre script on the role of community in end of life care was prepared. This was developed based on the ethnographic study done on the perception and practice of death, dying and end of life care among the Narayangonj population, a peri-urban area near Dhaka, the capital city of Bangladesh. This ethnography and the performance was a follow on of the previous ethnography and performance done on the same theme in a urban slum of Bangladesh as part of the earlier project. In the follow on project a performances of the theatre took place in Narayngonj. This theatre performance was accompanied by an innovative interactive graffiti, in which the community members were encouraged to draw graffiti on the theme of death, dying and end of life care. In addition a documentary film has been made on the performance of the theatre and the interactive graffiti. The theatre and the interactive graffiti sensitized the general population about the importance of lay participation in end of life care. Earlier another documentary film was made to demonstrate the experience of conducting a multidisciplinary project. 
Type Of Art Performance (Music, Dance, Drama, etc) 
Year Produced 2019 
Impact The project gave an unique opportunity for the diverse interdisciplinary team members to work together and experience how cross fertilization of disciplinary perspectives can produce useful outputs. The team members also benefitted by being sensitized to various disciplines. For example, palliative care physicians got exposed to the idea of arts intervention for health, community theatre, cultural studies and visa versa. The project also showed how an art intervention can sensitize general people on health issues. In addition a new artistic method called 'interactive Graffiti' has been introduced to public engagement. This new method allowed the community members to engage with the theme of death and dying and reflect on it though an artistic means. Combined use of theatre and the interactive graffiti has also been proved to be very engaging. The enthusiasm of the whole process has been captured in the documentary film made as part of this project. Earlier another documentary was made on the experience of conducting multidisciplinary project, which is being used as a leaning material for academics and students of University of Sussex, UK and the University of Liberal Arts, Bangladesh . The documentary is available in the website of University of Sussex. Furthermore, through this project two early career researchers from Bangladesh developed their capacity on ethnographic research. 
 
Description There are different outputs from the original and the follow on project. In this section will provide information about the output of the original project. The outputs from the follow on project will be described in the respective section. From the original project four outputs have been produced, including a report of the ethnographic study on death, dying and end of life care of urban poor of Bangladesh, a process documentation report of the project activities, a community theatre script and a short documentary on the experience of conducting a multi disciplinary project.
The project gave an unique opportunity for the diverse interdisciplinary team members to work together and experience how cross fertilization of disciplinary perspective can produce useful outputs. The team members also benefitted by being sensitized to various disciplines. For example palliative care physicians got exposed to the ideas of community theatre, cultural studies and visa versa. The project also showed how an art intervention can sensitize general people on health issues. Also through this project two junior researchers developed their capacity on ethnographic research as well as in writing journal articles.
Exploitation Route A follow on fund was secured to expand the experience of art intervention for palliative care in an urban poor setting to a peri- urban and rural setting of Bangladesh. The follow on project has just been completed in January 2020. The theatre script that has been developed through this project can be used by other organizations working on similar projects. The documentary film on the experience of conducting multidisciplinary project has already been used as a learning resource at University of Sussex, UK and the University of Liberal Arts, Bangladesh
Sectors Communities and Social Services/Policy,Healthcare

 
Description A community theatre script on the role of art to engage community in end of life care was prepared. This was developed based on the ethnographic study done on the perception and practice of death, dying and end of life care among the urban slum population of Dhaka city Bangladesh. Several performances of the theatre took place in the slum area. The theatre sensitized the general population about the importance of lay participation in end of life care. A documentary film has also been made on the experience of conducting a multidisciplinary research project taking this project as case. The film demonstrated how palliative medicine physicians, anthropologists, theatre activists and cultural study researcher worked together to achieve the project goals. This also demonstrated how an art media could be used for raising public health awareness. This film was shown to various non academic audience. The film has also been uploaded in Sussex University website.
First Year Of Impact 2018
Sector Communities and Social Services/Policy,Healthcare
Impact Types Cultural,Societal

 
Description Community Theatre, interactive Graffiti and Documentary film
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Partnership to ensure the sustainability of a public health palliative care project in Bangladesh through community theater: A follow on project
Amount £83,707 (GBP)
Funding ID AH/S005919/1 
Organisation Arts & Humanities Research Council (AHRC) 
Sector Public
Country United Kingdom
Start 02/2019 
End 01/2020
 
Description Partnership to ensure the sustainability of a public health palliative care project in Bangladesh through community theatre
Amount £164,470 (GBP)
Funding ID AH/R005923/2 
Organisation Arts & Humanities Research Council (AHRC) 
Sector Public
Country United Kingdom
Start 01/2018 
End 04/2019
 
Title Ethnography 
Description Ethnographic data were collected from urban, peri-urban and rural community of Bangladesh on their understanding and practice of death, dying and end of life care. This ethnographic data was used to develop culturally sensitive community theatre script. 
Type Of Material Database/Collection of data 
Year Produced 2019 
Provided To Others? No  
Impact These studies resulted capacity development of early career researchers on ethnography and helped the script writer to develop a culturally sensitive theatre script on the topic of end of life care. A journal article has also been written based on this ethnography which has been submitted to 'Indian journal of Palliative Care' and is currently under review. 
 
Description Partnership to ensure the sustainability of a public health palliative care project in Bangladesh through community theatre 
Organisation BRAC Centre
Country Bangladesh 
Sector Charity/Non Profit 
PI Contribution The original research project continued with a follow on project. The fist project targeted the audience of urban poor of Dhaka, the capital city of Bangladesh and follow on project targeted audience from a peri-urban and rural community in Narayangonje. For both the projects I have organized and facilitated number of workshops with partners. The workshops examined ways in which the perspectives of different disciplines (medical anthropology, palliative care, cultural studies, community theatre, public health) can be applied to interdisciplinary research and public engagement for community based palliative care. Workshops were also organized to develop theatre script and development of strategy for use of art in health interventions. I have coordinated the overall activities of the project including supervising the ethnographic research on perception and practice on death and dying of the urban, peri-urban and rural community. The other team members of the project provided inputs on their respective expertise elaborated in the next section.
Collaborator Contribution Malabika Sarker, of BRAC University, a public health researcher provided public health input to the project and supported two Bangladeshi researchers who conducted the ethnography. Nezamdduin Ahmed, palliative care physician of BSM Medical University has provided with the relevant information on palliative care that needs to be incorporated in public engagement activities. He also ensured the access of the researchers and the theatre activists to the palliative care project in the run by BSM Medical University. Rita Rosline Costa and Kollol Barua of BRAC Centre facilitated the community theatre performances in the urban, peri-urban and rural area of Bangladesh. Sumon Rahman of University of Liberal Arts provided support in developing the script for the community theatre as well as the interactive graffiti, an innovative art media. He also coordinated the making of the documentary film on the project. Mia Perry of Glasgow University and Janaka Jaywickrama of York University provided inputs on community art interventions during the workshop and the development of strategy for use of art in health interventions. University of Sussex provided logistics, venue and administrative supports for the workshops.
Impact Outputs from both the original and follow on Projects include: 1. Report of the ethnographic research on death, dying and end of life care of urban, peri-urban and rural areas of Bangladesh. 2. A script of a community theatre 3. Performance of community theatre 4. Interactive graffiti (as part of follow on project) 5. Strategy for using art in health interventions (as part of the follow on project) 6. Two documentary films (one on expreicne of working in multidisciplinary team and the other on the experience of combining community theatre and interactive graffiti) The collaboration is multi- disciplinary including perspectives from medical anthropology, public health, palliative Care, community theatre and cultural studies.
Start Year 2018
 
Description Partnership to ensure the sustainability of a public health palliative care project in Bangladesh through community theatre 
Organisation BRAC University
Country Bangladesh 
Sector Academic/University 
PI Contribution The original research project continued with a follow on project. The fist project targeted the audience of urban poor of Dhaka, the capital city of Bangladesh and follow on project targeted audience from a peri-urban and rural community in Narayangonje. For both the projects I have organized and facilitated number of workshops with partners. The workshops examined ways in which the perspectives of different disciplines (medical anthropology, palliative care, cultural studies, community theatre, public health) can be applied to interdisciplinary research and public engagement for community based palliative care. Workshops were also organized to develop theatre script and development of strategy for use of art in health interventions. I have coordinated the overall activities of the project including supervising the ethnographic research on perception and practice on death and dying of the urban, peri-urban and rural community. The other team members of the project provided inputs on their respective expertise elaborated in the next section.
Collaborator Contribution Malabika Sarker, of BRAC University, a public health researcher provided public health input to the project and supported two Bangladeshi researchers who conducted the ethnography. Nezamdduin Ahmed, palliative care physician of BSM Medical University has provided with the relevant information on palliative care that needs to be incorporated in public engagement activities. He also ensured the access of the researchers and the theatre activists to the palliative care project in the run by BSM Medical University. Rita Rosline Costa and Kollol Barua of BRAC Centre facilitated the community theatre performances in the urban, peri-urban and rural area of Bangladesh. Sumon Rahman of University of Liberal Arts provided support in developing the script for the community theatre as well as the interactive graffiti, an innovative art media. He also coordinated the making of the documentary film on the project. Mia Perry of Glasgow University and Janaka Jaywickrama of York University provided inputs on community art interventions during the workshop and the development of strategy for use of art in health interventions. University of Sussex provided logistics, venue and administrative supports for the workshops.
Impact Outputs from both the original and follow on Projects include: 1. Report of the ethnographic research on death, dying and end of life care of urban, peri-urban and rural areas of Bangladesh. 2. A script of a community theatre 3. Performance of community theatre 4. Interactive graffiti (as part of follow on project) 5. Strategy for using art in health interventions (as part of the follow on project) 6. Two documentary films (one on expreicne of working in multidisciplinary team and the other on the experience of combining community theatre and interactive graffiti) The collaboration is multi- disciplinary including perspectives from medical anthropology, public health, palliative Care, community theatre and cultural studies.
Start Year 2018
 
Description Partnership to ensure the sustainability of a public health palliative care project in Bangladesh through community theatre 
Organisation Bangabandhu Sheikh Mujib Medical University
Country Bangladesh 
Sector Academic/University 
PI Contribution The original research project continued with a follow on project. The fist project targeted the audience of urban poor of Dhaka, the capital city of Bangladesh and follow on project targeted audience from a peri-urban and rural community in Narayangonje. For both the projects I have organized and facilitated number of workshops with partners. The workshops examined ways in which the perspectives of different disciplines (medical anthropology, palliative care, cultural studies, community theatre, public health) can be applied to interdisciplinary research and public engagement for community based palliative care. Workshops were also organized to develop theatre script and development of strategy for use of art in health interventions. I have coordinated the overall activities of the project including supervising the ethnographic research on perception and practice on death and dying of the urban, peri-urban and rural community. The other team members of the project provided inputs on their respective expertise elaborated in the next section.
Collaborator Contribution Malabika Sarker, of BRAC University, a public health researcher provided public health input to the project and supported two Bangladeshi researchers who conducted the ethnography. Nezamdduin Ahmed, palliative care physician of BSM Medical University has provided with the relevant information on palliative care that needs to be incorporated in public engagement activities. He also ensured the access of the researchers and the theatre activists to the palliative care project in the run by BSM Medical University. Rita Rosline Costa and Kollol Barua of BRAC Centre facilitated the community theatre performances in the urban, peri-urban and rural area of Bangladesh. Sumon Rahman of University of Liberal Arts provided support in developing the script for the community theatre as well as the interactive graffiti, an innovative art media. He also coordinated the making of the documentary film on the project. Mia Perry of Glasgow University and Janaka Jaywickrama of York University provided inputs on community art interventions during the workshop and the development of strategy for use of art in health interventions. University of Sussex provided logistics, venue and administrative supports for the workshops.
Impact Outputs from both the original and follow on Projects include: 1. Report of the ethnographic research on death, dying and end of life care of urban, peri-urban and rural areas of Bangladesh. 2. A script of a community theatre 3. Performance of community theatre 4. Interactive graffiti (as part of follow on project) 5. Strategy for using art in health interventions (as part of the follow on project) 6. Two documentary films (one on expreicne of working in multidisciplinary team and the other on the experience of combining community theatre and interactive graffiti) The collaboration is multi- disciplinary including perspectives from medical anthropology, public health, palliative Care, community theatre and cultural studies.
Start Year 2018
 
Description Partnership to ensure the sustainability of a public health palliative care project in Bangladesh through community theatre 
Organisation University of Liberal Arts Bangladesh
Country Bangladesh 
Sector Academic/University 
PI Contribution The original research project continued with a follow on project. The fist project targeted the audience of urban poor of Dhaka, the capital city of Bangladesh and follow on project targeted audience from a peri-urban and rural community in Narayangonje. For both the projects I have organized and facilitated number of workshops with partners. The workshops examined ways in which the perspectives of different disciplines (medical anthropology, palliative care, cultural studies, community theatre, public health) can be applied to interdisciplinary research and public engagement for community based palliative care. Workshops were also organized to develop theatre script and development of strategy for use of art in health interventions. I have coordinated the overall activities of the project including supervising the ethnographic research on perception and practice on death and dying of the urban, peri-urban and rural community. The other team members of the project provided inputs on their respective expertise elaborated in the next section.
Collaborator Contribution Malabika Sarker, of BRAC University, a public health researcher provided public health input to the project and supported two Bangladeshi researchers who conducted the ethnography. Nezamdduin Ahmed, palliative care physician of BSM Medical University has provided with the relevant information on palliative care that needs to be incorporated in public engagement activities. He also ensured the access of the researchers and the theatre activists to the palliative care project in the run by BSM Medical University. Rita Rosline Costa and Kollol Barua of BRAC Centre facilitated the community theatre performances in the urban, peri-urban and rural area of Bangladesh. Sumon Rahman of University of Liberal Arts provided support in developing the script for the community theatre as well as the interactive graffiti, an innovative art media. He also coordinated the making of the documentary film on the project. Mia Perry of Glasgow University and Janaka Jaywickrama of York University provided inputs on community art interventions during the workshop and the development of strategy for use of art in health interventions. University of Sussex provided logistics, venue and administrative supports for the workshops.
Impact Outputs from both the original and follow on Projects include: 1. Report of the ethnographic research on death, dying and end of life care of urban, peri-urban and rural areas of Bangladesh. 2. A script of a community theatre 3. Performance of community theatre 4. Interactive graffiti (as part of follow on project) 5. Strategy for using art in health interventions (as part of the follow on project) 6. Two documentary films (one on expreicne of working in multidisciplinary team and the other on the experience of combining community theatre and interactive graffiti) The collaboration is multi- disciplinary including perspectives from medical anthropology, public health, palliative Care, community theatre and cultural studies.
Start Year 2018
 
Description Community Theatre, Inteactive Graffitti and documentary film 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A community theatre on the role of community in end of life care was performed in urban slum, peri- urban and rural area in and around Dhaka, the capital city of Bangladesh. In two consecutive projects two ethnographies were done one in the urban area and the other in peri-urban and rural area on people's understanding on death, dying and end of life care. A separate set of performances took place in urban slum area as part of the earlier project. In the follow on project the theatre performance in peri -urban area was accompanied by an innovative interactive graffiti on the theme of death and dying. The theatre performance and the graffiti generated lots of interest and enthusiasm. among the audience. The theatre and graffiti exercise sensitized the general population about the importance of lay participation in end of life care. Documentary film was also made to capture the experience of these two art interventions. Earlier a documentary film was also made on the experience of conducing multidisciplinary project.
Year(s) Of Engagement Activity 2018,2019