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

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.

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.