Aisha Lofters

Addressing Underscreening for Cervical Cancer among South Asian Women: Using Concept Mapping to Compare Service Provider and Service User Perspectives of Cervical Screening in Ontario, Canada

Cervical cancer is largely preventable through screening and treatment of cervical lesions. In the province of Ontario, South Asian women have some of the lowest rates of screening. The roles of service providers—those in healthcare and community services—and their interactions with screen-eligible people can greatly impact the uptake of screening. In our study, we used concept mapping (CM) to engage over 70 South Asian service users (i.e., those eligible for cervical screening) and service providers to identify a range of ideas and experiences that impact uptake of cervical screening for South Asian women, which were then rated by 45 participants in terms of ‘importance’ and ‘ease to address’ to encourage participation in cervical screening. Overall, ideas related to knowledge and education were rated as most important and easiest to address by both groups. Some differences were seen with South Asian service users valuing the importance of addressing ‘cultural beliefs and influences specific to sexual health’ more than service providers, while service providers valued the importance of addressing ‘lack of comfort and supportive relationships’ more than South Asian service users. Future interventions should target the knowledge and education needs of service users and increase service providers’ awareness of cultural beliefs and influences specific to sexual health.

Voices from the Margins: Barriers and Facilitators to HPV Self-Sampling Among Structurally Marginalized People with a Cervix in the Greater Toronto Area and Ontario

Sex workers and formerly incarcerated people with a cervix face significant structural, interpersonal, and emotional barriers to cervical cancer screening, despite being at elevated risk for HPV infection. HPV self-sampling (HPV-SS) is a validated, user-directed method that has the potential to address these barriers, yet it remains excluded from Ontario’s organized screening program. This qualitative study explored the lived experiences of structurally marginalized individuals with a cervix who were offered HPV-SS as part of a mixed-methods pilot in the Greater Toronto Area. Five virtual focus groups were conducted with 34 participants, including both those who used the HPV-SS kit and those who declined it. Using inductive thematic analysis, we identified barriers to traditional screening including fear, stigma, mistrust of healthcare providers, logistical constraints, and a lack of accessible information. HPV-SS was widely described as more acceptable, empowering, and emotionally manageable, offering participants autonomy, privacy, and control over their care. Concerns included swab design, uncertainty about correct use, and unclear follow-up after positive results. Participants offered concrete, community-informed recommendations to improve HPV-SS implementation, including opt-in distribution models, gender-affirming language, and trauma-informed educational materials. The findings highlight the urgent need to integrate HPV-SS into organized screening programs to advance equitable access to cervical cancer prevention for marginalized populations.

Breaking Barriers: Empowering Cervical Cancer Screening with HPV Self-Sampling for Sex Workers and Formerly Incarcerated Women in Toronto

Background: Although cervical cancer (CC) is highly preventable through appropriate screening methods like the Papanicolaou (Pap) test, which enables early detection of malignant and precancerous lesions, access to such screening has not been equitable across social groups. Sex workers and people with records of incarceration are among the most under-screened populations in Ontario. Little is known about the acceptability and feasibility of HPV self-sampling (HPV-SS) as an alternative cervical cancer screening method for these groups. This online, community-based mixed-methods pilot study aimed to address this knowledge gap. Methods: Eighty-four under- and never-screened sex workers and ex-prisoners aged 25–69 years and residing in the Greater Toronto Area, were recruited by community peer associates. Participants completed an online survey and viewed short videos about CC and screening with Pap and HPV-SS. Those who opted for HPV-SS conducted the test at one of two collaborating organizations. Results: The median age of participants was 36.5 years. Most had limited knowledge about CC and screening. Approximately 13% identified as non-binary, and 5% as two-spirit or trans men, with the majority having completed secondary education. Of the participants, 88% chose HPV-SS, and one-third tested positive for high-risk HPV types. The ability to self-sample without judgment from healthcare providers was noted as a key advantage. However, there was a need for training on proper HPV-SS techniques. Conclusions: To improve cervical cancer screening among sex workers, increasing awareness through participatory community co-creation of sexual health education is essential. Additionally, offering HPV-SS as a screening option is crucial, given its demonstrated acceptability and feasibility within this population, many of whom lack a primary care provider and face discriminatory attitudes in healthcare settings.

Important and Feasible Actions to Address Cervical Screening Participation amongst South Asian Women in Ontario: A Concept Mapping Study with Service Users and Service Providers

Regular cervical screening can largely prevent the development of cervical cancer and innovative methods are needed to better engage people in screening. In Ontario, Canada, South Asian women have some of the lowest rates of screening in the province. In this study, we used concept mapping to engage two stakeholder groups—South Asian service users and service providers—to identify and prioritize points of intervention to encourage the uptake of cervical screening. After participants brainstormed a master list of statements, 45 participants rated the statements based off ‘importance’ and ‘ease to address’ in relation to encouraging cervical screening. A bivariate plot (X-Y graph) that shows the average rating values for each statement across the two rating variables (a ‘go-zone’ display) was produced to display priorities for implementation. Statements that were considered high priority to address reflected issues around education and awareness including understanding and communication related to cervical screening and preventative care, as well as the need for trusted sources of information. Statements that were considered high priority but challenging to implement were centered around fear, stigma, discomfort, family and personal priorities. This study highlighted that stigma, norms and social relations that impact the uptake of screening must be addressed in order for education and awareness raising to be effective and to move people from conviction around screening to action.

Understanding the Acceptability and Uptake of HPV Self-Sampling Amongst Women Under- or Never-Screened for Cervical Cancer in Toronto (Ontario, Canada): An Intervention Study Protocol

Cervical cancer remains a global public health concern, even though scientific advancements have made the disease almost entirely preventable. With the link between human papillomavirus (HPV) and cervical cancer, and the subsequent improvement in screening technology, there is potential to improve access and coverage of cervical screening with the introduction of HPV self-sampling. In Ontario, Canada, a province with a cytology-based screening program (i.e., Pap test), women who identify as South Asian, West Asian, Middle Eastern and North African have some of the lowest rates of screening, and research suggests they have a higher burden of cervical cancer. In this study, we will use both quantitative and qualitative methods to understand the acceptability and uptake of a take-home HPV self-sampling kit. Working with community champions—people with pre-existing connections with local groups—we will recruit women from these groups who are under- or never-screened for cervical cancer. Women will self-select whether they are in the group that tries HPV self-sampling or in the group that does not. We will aim for 100 women in each group. All participants will provide feedback on the feasibility, acceptability and preferences for cervical screening through a survey and phone follow-up. Women who self-select the HPV self-sampling group, will be followed up to find out if they followed through with self-sampling and to understand their experience using the device. Women who do not want to try self-sampling will be followed up to see if they went on to get a Pap test. The qualitative phase of this study consists of five focus groups with participants and semi-structured interviews with key informants in the community.

Implementation of a Cervical Cancer Screening Intervention for Under- or Never-Screened Women in Ontario, Canada: Understanding the Acceptability of HPV Self-Sampling

With appropriate screening, cervical cancer can be prevented. In Ontario, Canada, some groups of women have low screening rates. South Asian, Middle Eastern and North African women are particularly at risk of under-screening. Currently, cytology-based screening is used in Ontario, although the growing evidence and adoption of HPV testing for cervical screening has encouraged many jurisdictions around the world to move towards HPV testing, with the option of self-sampling. We conducted an intervention beginning in June 2018, where we recruited over 100 under- or never-screened (UNS) women who identify as South or West Asian, Middle Eastern or North African from the Greater Toronto Area, to understand the uptake and acceptability of HPV self-sampling as an alternative to a Pap test. Participants self-selected if they tried the kit or not and completed both quantitative and qualitative research activities. This paper focuses on the qualitative arm of the study, where follow-ups and five focus groups were conducted with those who tried the kit (three groups) and those who did not (two groups), as well as eight key informant interviews with community champions and others who were involved in our recruitment. We used the Consolidated Framework for Implementation Research (CFIR) to guide our data collection and analysis. Major themes around convenience, privacy and comfort came from the data as important drivers of the uptake of the intervention. The role of community champions and peers in engaging and educating UNS women, as well as having self-confidence to collect the sample, also came out as factors impacting uptake and plans for continued use. Overall, the intervention showed that HPV self-sampling is an acceptable alternative to a Pap test for some but not all UNS women in Ontario.

The potential benefits of “community champions” in the healthcare system

In a study to understand acceptability and uptake of Human Papilloma Virus (HPV) self-sampling, we engaged community champions to lead recruitment and other study activities. This article describes qualitative findings relevant to the role of the community champion. We found that community champions were critical to promoting awareness about and encouraging cervical screening and HPV self-sampling. They were well-connected community members who had healthcare backgrounds, which created trust in their messages. They were highly effective at encouraging screening because of their education and cultural congruency, combined with the time for thorough and clear explanations. Women had an inherent level of comfort with the community champions that often did not exist with their physician. The community champions were seen as being able to address some of the barriers that exist within the healthcare system. We encourage health leaders to consider how this role can be sustainably and meaningfully incorporated into the healthcare system.