Voices from homes: A mixed methods study on gaps in palliative care for patients and their families in rural Alappuzha, Kerala.

Kerala has been lauded for its community based palliative care model of service, involving local self-governments, government and private agencies, and the neighbourhood network of volunteers. Understanding beneficiary perspectives is important to improve quality of services. This gap analysis aimed to identify the proportion of individuals potentially requiring palliative care in two wards of Kuttanad taluk of Alappuzha district in Kerala and to ascertain the gaps in the home-based palliative care services provided to the patients, if already enrolled under palliative care. A mixed methods approach was adopted. In phase 1, a cross-sectional community-based survey using a pre-validated semi-structured questionnaire was conducted. (Gap Analysis Questionnaire)All households of the two wards were considered. In phase 2, individuals already receiving palliative care services were interviewed. Quantitative data were described by frequencies and percentages. Thematic analysis was done for qualitative data, by coding and generation of categories and themes. Triangulation of the data was done to understand the gaps. Five hundred and forty-nine (549) houses, covering a population of 1799 were surveyed in both wards. Thirty-five people (1.9%) required palliative care. 14 were bed-bound, 16 were home-bound and 5 had chronic disease/disability on continuous medication. Most commonly identified were elderly people with chronic diseases. The service gaps identified were infrequent and inconsistent staff visits, irregular delivery of supportive services such as physiotherapy, diminished availability and quality of comfort devices, shortage of trained volunteers and community support, financial strain, restricted access due to challenging geographic terrain, and inadequate intersectoral collaboration. There is a wide gap between service provision and requirements of patients and their families, with fragmented services, highlighting the need for increasing the reach of the services in these wards. This data can be used by the palliative care providers of these areas for planning, designing and implementing community based palliative care services, improving outreach, investing in volunteer training and strengthening intersectoral collaboration between healthcare providers, local self-government and community groups to ensure equitable access to quality palliative care for all.