Community participation in palliative care: Reflections from the ground
Suresh Kumar
Abstract
Community participation is a frequently mentioned theme in palliative care projects. Yet most of the projects claiming to be community-led have only minimal participation from the community, usually in the form of resource mobilization. Achieving higher levels of participation, the process of involving community collectives as partners in running, and later taking responsibility to sustain and own the program, is more complex and more difficult to achieve. Common barriers include lack of the mandatory preparatory work to understand the social and political dynamics of the community, facilitators’ values and agenda assuming the dominant role in the project, unwillingness on the part of facilitators to give up control and problems with the ‘political process’ that should go with capacity building. Another issue is that community mobilization, being a dynamic cascading process, does not yield to conventional methods of evaluation.