Considerations for human papillomavirus (HPV) self-collection programs for cervical screening: a qualitative study to inform co-design of a screening trial among vulnerable women from south India

Abstract Background There is a need to co-design context specific programs for cervical screening using human papillomavirus (HPV) self-collection, given the anticipated program transition to HPV screening in low- and middle-income countries. We conducted a co-design study to plan a trial of self-collection in Tamil Nadu, India, among rural, tribal and urban slum settings. Methods In 2023 we conducted nine focus group discussions among never screened women and interviewed 18 women previously screened using Visual Inspection with Acetic acid. Open inductive coding was followed by deductive framework analysis using the Capability Opportunity Motivation – Behaviour (COM-B) model to identify barriers and facilitators to self-collection. Results Never screened women reported a lack of perceived need due to being asymptomatic, fear and embarrassment, stigma and fear of cancer, low awareness and barriers to attending facilities for screening. Reasons for screening included opportunities provided by community outreach and by trusted providers/ sources of information. Self-collection was largely acceptable, perceived to be painless and easy. Women preferred self-collection at home or the community, following group-based information sessions. Some women had doubts regarding self-efficacy, fears regarding pain, or were unconvinced of the need for screening. Group education may help motivate asymptomatic women in settings where peer influence is an important factor for decision making. Conclusions Self-collection, especially if provided through group-based community outreach, would be acceptable to most women in low-resource settings. Concerted efforts are required to motivate women for screening as competing priorities and low perceived need for screening will persist even with self-collection.