Leveraging the role of families in decision-making to inform a program of HPV-based self-collection for cervical screening in Tamil Nadu, India: a qualitative study

Cancer Causes Control. 2026 Jan 17;37(2):25. doi: 10.1007/s10552-025-02108-x.

Abstract

Purpose: Collectivist cultures often perceive health seeking and decision-making to be less individual and more communal, with most decisions made in consultation with a spouse or other family members. These dynamics are further complicated by heightened cultural sensitivities for women seeking care for reproductive needs. Our study explored community perceptions of cervical screening and recommendations for self-collection for Human Papillomavirus (HPV) testing in south India.

Methods: We conducted eight focus group discussions (FGDs) with 54 men (mean age 48 years) and 10 FGDs with 67 women (mean age 58 years) belonging to rural, urban poor and tribal communities in Tamil Nadu. We used a framework analysis method for coding using the World Health Organization (WHO) framework for assessing barriers to health service coverage, the Capability Opportunity Motivation-behavior (COM-B) model, and the Theoretical Framework of Acceptability (TFA).

Results: Stigma, familial hierarchies, gendered norms and challenges with accessing health facilities contributed to delayed care for women with gynecological symptoms and hindered screening. Both men and women supported the idea of self-collection for their family members, although doubts were raised regarding accuracy, and usefulness for asymptomatic women. Participants suggested group counseling, community-based screening, peer motivation and easily accessible follow-up assessments for ensuring wide coverage. These findings informed the design and implementation of a cervical screening trial using self-collection, in the same locations.

Conclusions: Screening programs need to address accessibility and acceptability barriers to cervical screening through family involvement, leveraging family support for the entire screening pathway from screening to follow-up.

Keywords: Cervical cancer; India; Men; Qualitative; Screening.

MeSH terms

  • Adult
  • Decision Making*
  • Early Detection of Cancer* / methods
  • Early Detection of Cancer* / psychology
  • Family* / psychology
  • Female
  • Focus Groups
  • Humans
  • India / epidemiology
  • Male
  • Middle Aged
  • Papillomaviridae / isolation & purification
  • Papillomavirus Infections* / diagnosis
  • Papillomavirus Infections* / psychology
  • Papillomavirus Infections* / virology
  • Patient Acceptance of Health Care
  • Qualitative Research
  • Uterine Cervical Neoplasms* / diagnosis
  • Uterine Cervical Neoplasms* / prevention & control
  • Uterine Cervical Neoplasms* / psychology
  • Uterine Cervical Neoplasms* / virology