To our knowledge, this is the first study to explore the effectiveness of HPV-SS supported by arts-based sexual health education in promoting cervical cancer screening uptake among low-income rural women in India. Our study found limited knowledge and negative attitudes about cervical cancer and screening not only among rural women but also their male partners. Furthermore, we found that most of our participants had never received any sexual health education in their lifetime. Interestingly, the majority of our study participants considered the risk of getting cervical cancer as improbable or quite unlikely.
Our findings are consistent with prior research in lower-middle income countries (32, 33). Existing evidence demonstrate that women in rural India have a high risk of developing cervical cancer due to young age at marriage, low literacy, low screening uptake associated with structural barriers such as lack of access to sexual health information, long distance from healthcare facilities, insufficient available healthcare providers, and persistence of genital infections, including HPV and other STI (34, 35). However, despite these risk factors, Indian women and their male partners in rural areas were completely unaware of the threat of cervical cancer and the importance of its early identification and treatment. These are a clear indication of violation of their basic human rights to health as indicated under Article 25 of the Universal Declaration of Human rights (1). The right to health includes access to health information and education as well as the right to prevention, treatment, and control of disease (1).
Lack of education and misinformation surrounding HPV and cervical cancer among women and men is a significant barrier to accessing screening for early detection and prevention. Our study showed a significant increase in knowledge and improvement in attitudes about cervical cancer and screening following participation in our arts-based sexual health education sessions among all 240 participants. These findings are consistent with interactive arts-based strategies such as audio and theater programs offered to deliver sexual health education focusing on HIV in Tamil Nadu, India. Nambiar and colleagues found that those who had exposure to the sexual health education programs had significantly higher knowledge on HIV and its therapies as well as a significantly higher propensity to ask doctors questions about it (36). Similarly, in the rural area of Namkum and Kanke in India, Akhorui and colleagues found that reproductive and sexual health information delivered through audio-visual materials and group discussions showed significantly greater knowledge and improvement in health practises among tribal women (37). Our story-telling sexual health education approach has been proven to be effective in promoting sexual health literacy (38). Storytelling is an integral aspect of everyday life. Stories enable participants to engage with the contents in ways that they are able to make sense in the context of their own lives, through self-reflection and dialogue with others (39, 40). They are also effective in reducing stigma and engaging the audience emotively to promote empathy, openness and positive action for health (41–44). Storytelling is a well-established and well-accepted means of cultural learning for empowerment in India (45), particularly among women who have been historically left out of more formal learning institutions (46).
Our findings supported our central hypotheses of higher knowledge, improvement in attitudes, and reduction in the stigma surrounding cervical cancer and screening after participation in arts based sexual health education sessions (SHEs). Although a significant improvement in attitudes and reduction in stigma surrounding cervical cancer and screening prevailed among male participants, a similar trend was not observed for female participants. The decrease in attitudes toward cervical cancer may be related to the social expectation for Indian women to be modest; worries about cervical cancer, and discomfort in viewing women’s genitals in the SHE materials on HPV screening. Furthermore, women may be more vulnerable to STI stigma since women with STIs have been accused of and condemned for having “loose character” and viewed as “vectors of disease" who pass their infection on to men. Hence, they are at higher risk of being stigmatized due to entrenched gender norms and stereotypes associated with these infections. Internalized, anticipated, perceived, enacted, and secondary stigmas surrounding HPV, a STI and primary cause of cervical cancer, may deter uptake of cervical cancer screening due to disgust/shame, fear of diagnosis, entrenched gender norms, and negative stereotypes associated with infections (47, 48). As a conservative society, women in India at risk for or diagnosed with an STI, like HIV or HPV, are often perceived through a negative lens as these infections are societally linked to sexual misbehaviour and promiscuity (49, 50). By engaging both men and women and creating safe spaces for open discussions and dialogue, topics related to sexual health can be normalized and hence de-stigmatized which are important steps in reducing cervical cancer mortality and morbidity (23).
The reduction in STI stigma in males, as the traditional head of the household in India, is an important step toward changing the biased attitudes toward women as men can be facilitators for women’s participation in screening. In our study, we found a significant reduction in stigma related to HPV among male participants following the SHEs. This was consistent with other educational initiatives which involved Nigerian men in women’s reproductive health discourses and reported an improvement in knowledge and reduction in HPV stigma in the community (19).
Higher uptake of HPV-SS confirmed our hypothesis that this method of screening is preferred over the traditional methods of screening. Almost all women and their supportive male partners, roughly 96%, accepted HPV-SS and chose this method of cervical cancer screening over other traditional methods. These results support findings from LMICs in Africa including Chad, Cameroon, and Kenya where the majority of women also had a higher acceptability of and preference for HPV-SS compared to other formats of screenings completed by healthcare providers (51–53). In rural and Indigenous communities of South America, almost all participants were willing to complete the self-collection method and most of them also found it to be comfortable (54).
Although it is not yet widely implemented, HPV-SS provides considerable advantages to women across the globe, especially those living in rural or underserved areas who face limited access to cervical cancer screening and sexual health education. By completing the self-sampling test at home with informed educational tools and a support network, women can conveniently overcome limitations in accessing cervical cancer screening. Such limitations include lack of infrastructure for and travel time to health care services (55), cultural values and beliefs surrounding male healthcare providers and maintaining privacy of genitalia (56), as well the cost associated with fees for screening by a healthcare provider (57). While such benefits exist, commonly cited barriers for self-sampling among women include a lack of self-confidence for collecting a reliable sample, fear of injuring oneself, concerns about accuracy of the test, and interpersonal stigma and burden related to diagnosis of sexually transmitted infections (STIs) (58–60). As demonstrated by our findings, the widespread implementation of educational interventions that are tailored to various populations may address some of these factors.
There are a few limitations which should be taken into consideration when interpreting our results. First, the use of non-probability sampling methods (i.e., purposive sampling) may have introduced selection bias and diminished generalizability to the total population of rural Indian women. Although not ideal, the purposive sampling method was necessary because no sampling frame was available for this hard-to-reach women who were under or never screened for cervical cancer. Nevertheless, this study will provide the basis for future large-scale, nationwide studies that aim to assess knowledge, attitudes, stigma about cervical cancer and screening and acceptability of HPV-SS in rural communities. Second, the topic of cancer and sexual health are considered stigmatic among South Asian populations and our use of interview-based questionnaires may have influenced full disclosure of subject matter. This may have resulted in respondents’ tendency to give socially desirable responses. However, the use of ASHA workers who were considered trusted members of community, during recruitment phase of our study, helped to establish a good rapport between our medically trained staff who conducted the interviews and the study participants.