Forever Etched

Abstract

ABSTRACT newlineTitle: Forever Etched: Understanding the experiences of informal caregivers of the home based newlinepalliative care model in a multisite study - a multiple case study approach. newlineAim: To understand retrospectively, the experiences of informal family caregivers, of the home- newlinebased palliative care model, for their patients with life-threatening or life-limiting conditions, using newlinea multiple case study approach, across 3 different sites. newlineObjectives: newline1. To describe three of the oldest continuing home-based palliative care service models newlineindigenously developed in India. newline2. To understand the experiences of informal family caregivers of providing care to patients newlinewith life-threatening or life-limiting conditions within a home-based palliative care model. newline3. To make state-level recommendations for home-based palliative care services, based on newlineend-to-end experiences of bereaved caregivers with the model. newlineMethodology: This study presents a systematic overview of the development of palliative care in newlineIndia by reviewing relevant demographic, epidemiological, and health system data obtained from newlinegovernment records, publicly available palliative care material from the Indian Association of newlinePalliative Care, grey literature (annual reports, service statistics, technical papers), email newlinecorrespondence, and personal communication with sector experts, as well as websites, archival newlinematerial, field notes from previous site visits, and interactions with key functionaries of the three newlinenon-governmental organizations (NGOs) under consideration. Face-to-face in-depth qualitative newlineinterviews with conducted with 15 bereaved caregivers, whose patients had received home-based newlinepalliative care from the selected NGOs. newlineviiiFindings: Following a brief outline of the context and healthcare system within which the three newlineNGOs are situated, the origin and growth of each is traced, up to the current range of palliative newlinecare services provided, including their governance, funding, workforce capacity and coverage. The newlinenarratives of individuals accessing services from a particular NGO are compared and contrasted newlinewith each other (within case analysis), then across NGOs (cross case analysis), along 7 domains newlineof enquiry: patient s insight, selection of palliative care service, self-analysis of efficacy, respite newlineand coping mechanisms, death and bereavement, impact on caregiver, and recommendations for newlinefuture. newlineConclusion: A range of recommendations are provided for establishing comprehensive palliative newlinecare services, based on learnings from long-standing palliative care non-governmental newlineorganizations and personal experiences of bereaved caregivers. Recommendations are also made newlineat the healthcare system and policy levels for application across the states and country. newlineKey words: home-based palliative care, home care, family caregiver, informal caregiver, unmet newlineneeds of caregivers, caregiver support newlineix newline