Establishing palliative care in tribal and rural Indian setting: A participatory action research approach.

Abstract

e24085 Background: We established a palliative care center in the tribal area of Santhal Pargana, India, under a tertiary care facility, as a crucial step in addressing the palliative needs of oncology patients. This study assesses the center's inaugural year, focusing on referral patterns, morphine consumption, and pain management. Methods: Data from all patients visiting the palliative care outpatient department (OPD) in 2023 were prospectively collected and analyzed. The study focused on key palliative care indicators, including morphine consumption, patient referrals, and the mean Numeric Rating Scale (NRS) pain score after initial consultation. The PAR approach was utilized to tailor services to the community's needs. Results: The center observed an increase in patient referrals, from 8 new patients in January to 19 by December. The patient demographic primarily comprised individuals with head and neck cancer (43%), followed by breast cancer (28%) and gall bladder cancer (12%), alongside other types such as cervix, sarcomas, lung, and adult hematolymphoid malignancies. Bone metastasis was present in 46 (55.4%) patients at initial presentation. Morphine consumption demonstrated a notable rise, from 840 mg in May to 2860 mg in December, totaling 9800 mg for the year. The mean NRS pain score improved significantly from 6.5 in January to 4.3 post-initial consultation. The center maintained an overall median of 3 consultations per patient, and bereavement support was provided to 13 (15.7%) patients. Conclusions: The integration of the Participatory Action Research approach, specifically the CTC-5, was instrumental in the successful initiation and expansion of palliative care services within the center. The structured training, mentorship, and organizational restructuring, facilitated by the program, were crucial in establishing a modest palliative care infrastructure. This comprehensive approach not only enhanced care delivery but also ensured the sustainability and adaptability of palliative services, effectively addressing the gap in palliative care in rural, tribal settings.