Abstract
BACKGROUND: There is a paucity of knowledge on the socio-culturally relevant community based palliative care (CBPC) models in rural north India. This study aimed to explore the barriers and facilitators to accessing and providing palliative care (PC) to people with cancer in the rural North India. METHODS: This study employed a qualitative design comprising of in-depth interviews (IDIs) and focus group discussions (FGDs) to explore the perspectives of community healthcare providers (CHPs), people with cancer and their caregivers. Purposive sampling with maximum variance was used to ensure data saturation. The data was analysed using thematic analysis with findings interpreted through the theoretical framework of the WHO public health strategy for PC. FINDINGS: Forty-two IDIs were conducted with 21 CHPs, 11 people with cancer and 10 caregivers. Two FGDs were conducted with Accredited Social Health Activists (ASHAs, n = 5) and Auxiliary Nurse Midwives (ANMs, n = 5). Four themes emerged (1) Policy influence on PC: barriers and opportunities. Barriers included lack of PC provision within the healthcare system, inadequate and inaccessible financial schemes and lack of incentivization for ASHA workers. The role played by ASHA workers emerged as a facilitator. (2) Awareness and training gaps. Lack of educational and training in PC, unawareness, flawed perceptions and regressive attitude emerged as the barriers. However, training was identified as a catalyst for change. (3) Shortages and Strain: factors impacting PC implementation. Participants unanimously expressed lack of essential drugs and equipment for PC and limited and overworked workforce. CHPs acknowledged the importance of PC and the need for dedicated PC teams. (4) Formal gaps and informal strengths: factors shaping CBPC access. Participants expressed limited access to local healthcare facilities. However, some NGOs tried to bridge this gap. CONCLUSION: The study highlights significant barriers and a few facilitators to accessing and providing PC in rural north India at the level of policy, education, drug availability and infrastructure. The WHO public health approach helped in identifying interventions to address and leverage the identified barriers and facilitators respectively. REGISTRATION: Clinical Trials Registry of India (CTRI/2023/04/051357; dated 06/04/2023).