Identifying palliative care needs for tribal-rural populations

Identifying palliative care needs for tribal-rural populations

Shilpa Khanna
SANGWARI-People’s Association for Equity & Health, India

Non-communicable diseases are major cause of deaths and morbidity across the world. This is true for any setting be it rural or urban. Their cost of treatment is often unaffordable by many. Palliative care by a holistic view aims to improve quality of life. We highlight problems in the daily lives of people suffering from debilitating conditions such as advanced cancer, stroke, paraplegia, advanced OA knees and so on. These people belong to tribal-rural communities and have unique micro-habitat conditions that make usual methods/pathways of care irrelevant or exuberant.

We defined the problem statement based on the current evidence of burden of disease, with listing of five major gaps/barriers in improving quality of life along-with the current standard of care/best practice for the same. The gap/ barrier is elaborated further with current alternatives in their socio-cultural environment and highlighted through lived patient experiences in the form of five social-case studies. We talk about the gaps in management of wounds, shortages in the availability of specialists, need for affordable solutions to air mattress, diapers, and commode chairs for the disabled or end-of-life care, lack of infra-structure for transportation of people or medicines or diagnostics, and system gap for guidance across all healthcare-levels by a social-worker cum patient navigator.

There is a need to focus on problem-based innovation in the realms of space, stuff, staff and system to improve the lives of those already marginalised and offer them the best possible life.

Keywords: Palliative care, quality of life, tribal, rural, innovation