Barriers and contributions of rural community health workers in enabling cancer early detection and subsequent care in India

Abstract

BACKGROUND: The cancer burden in India is escalating, with rural regions facing the greatest challenges in access to early detection and treatment. Community Health Workers (CHWs), such as Accredited Social Health Activists (ASHAs), Village Health Nurses (VHNs), and Auxiliary Nurse Midwives (ANMs), play a critical role in bridging these healthcare gaps. This study explores the barriers and contributions of CHWs while facilitating early detection and subsequent care in selected rural areas of India.

METHODS: This qualitative study is part of the Access Cancer Care India (ACCI) implementation research project, conducted in three states: Rajasthan, Kerala, and Tamil Nadu. We conducted six focus group discussions (FGDs) with 47 CHWs, representing various health cadres, to investigate their experiences and the barriers they face in delivering cervical, breast and oral cancer care. The discussions were analyzed using Charmaz's Grounded Theory approach, with axial coding and constant comparative analysis until data saturation was reached.

RESULTS: CHWs identified multiple barriers to cancer early detection and subsequent care delivery, organized into six overarching themes: (1) Program focus and awareness, (2) Treatment and referral challenges, (3) Acceptability and accessibility, (4) Rigid social customs and beliefs, (5) Lack of support at higher centers, and (6) Financial constraints. A lack of formal training, poor infrastructure, negative communication, fear of diagnosis, and financial burdens were among the major barriers highlighted. CHWs from Tamil Nadu and Kerala, where sporadic screening initiatives exist, reported better preparedness compared to their counterparts in Rajasthan. Additionally, the CHWs outlined the vital role of positive word-of-mouth and community engagement in improving cancer screening participation.

CONCLUSIONS: CHWs in rural India face significant personal, community, and health system barriers while facilitating cancer early detection services and subsequent follow up. Addressing these barriers through tailored training, enhanced health infrastructure, and community-based interventions can improve cancer care access and outcomes in rural settings. Future policies should focus on strengthening CHW-led approaches and addressing the systemic barriers in cancer care delivery.