RETRACTED: Community-based palliative care needs and barriers to access among cancer patients in rural north India: A Participatory action research

Abstract

Background: Community based palliative care (CBPC) services are scarce in rural North India. An in-depth understanding of local needs and barriers is required to formulate sustainable and context-specific Palliative care (PC) strategies. This paper aimed to explore the PC needs and barriers to access among cancer patients in a rural region with high cancer burden. Methods: Study was conducted in a rural block of North India. Participatory action research (PAR) was employed to explore the PC needs, barriers and challenges faced by cancer patients to help design a context-specific comprehensive community based palliative care model for the study block. Situational assessment, community sensitization workshops (CSWs) and door-to-door surveys were planned, conducted and further developed over three PAR cycles. Systematic collection and analysis of qualitative data and quantitaive findings allowed methodological triangulation. Descriptive statistics and thematic analysis were used. Results: A total of 27 CSWs involving 526 stakeholders were conducted. Participants were recruited through convenient and purposive sampling. A total of 256 cancer patients identified through multi-faceted strategies were assessed for PC need and symptom burden. Patients were diagnosed in advanced stages with an estimated PC need of 1.22/1000 population. Majority (56.6%) had ≥ one moderate-severe symptoms with the most common symptoms being tiredness, pain and loss of appetite. Analysis of qualitative findings generated three overarching themes: Unmet needs, Burden of caregiving, and Barriers and challenges. Conclusion: The need for CBPC in rural North India was high. Cancer affected all domains of patients’ and their families’ lives contributing to biopsychosocial suffering. Lack of awareness, nearby healthcare facilities, transportation and essential medicines made access to PC difficult. Our findings emphasize the need for tailored CBPC interventions considering socio-cultural and geographic variations. Trial Registration: Clinical Trial Registry of India (CTRI/2023/04/051357)