Title: Partnership to ensure the sustainability of a public health palliative care project in Bangladesh through community theatre
Funder: Arts and Humanities Research Council

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.


Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE