Perceptions of cervical screening uptake amongst South Asian women: A concept mapping study

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In Ontario, Canada, South Asian women have the lowest rates of cervical cancer screening among major ethnic groups in the province. Methods : Using an innovative and participant-driven method called Concept Mapping (CM), we set out to understand how the lives and experiences of South Asian women living in Ontario shape their decisions around getting screened for cervical cancer. We engaged over 70 South Asian women and people who serve them in healthcare and community, to drive the CM process. Results : Participants brainstormed 45 unique and distinct statements. Through sorting and map interpretation, participants identified and interpreted 6 clusters amongst the statements: 1) Personal beliefs and misconceptions around cervical cancer; 2) Education and knowledge issues around cervical cancer; 3) Cultural beliefs and influences specific to sexual health; 4) Barriers to prioritizing uptake of cervical screening; 5) System/ infrastructure gaps or inadequacies; and 6) Lack of comfort and supportive relationships in healthcare. Additional analysis shows us the interrelationships between the ideas. Statements within the clusters about education and knowledge issues around cervical cancer, personal beliefs and misconceptions, as well as cultural beliefs and influences specific to sexual health are viewed as distinct beliefs with clear effects on the uptake of cervical screening. More complex interrelationships are seen with the cluster of statements about barriers to prioritizing uptake of cervical screening. Conclusions : As Ontario and many other jurisdictions around the world seek to strengthen cervical screening efforts in line with national and international goals to eliminate cervical cancer by 2040, it is critical to address underscreening. This CM study recognizes the value of engaging those most impacted by an issue, to identify and prioritize how and where to intervene to address low rates of cervical screening. To address underscreening we need to design multi-level interventions that address the identified ideas and the interrelationships among them. concept mapping cervical screening health equity women’s health community engagement South Asian women participant-driven Figures Figure 1 Figure 2 1. Background With a lengthy pre-cancerous stage, regular screening can dramatically reduce both incidence and prevalence of cervical cancer. In 2024, approximately 1600 women will be diagnosed with cervical cancer in Canada, and an estimated 400 women will die from it. [ 1 ] Today, cervical has become the fastest increasing cancer in females and we know that cervical cancer diagnoses and deaths are avoidable through regular screening. [ 2 ] In the province of Ontario, Canada, the Ontario Cervical Screening Program (OCSP) was established in 2000 and at the time, 59% of eligible women were getting screened for cervical cancer in the province.[ 3 ] Participation rates, however, peaked at 67% in 2007–2009, and have remained stable at approximately 60% since 2013 - well below provincial targets [ 3 ]. Many groups, including newcomers, people who are older, of lower socio-economic status, in poorer health and otherwise marginalized, are amongst the most under- or never-screened (UNS) for cervical cancer in Ontario [ 4 ] Cervical cancer is one of the few cancers with a readily detectable and treatable precursor stage, making prevention and screening the most reliable strategy [ 5 ]. The purpose of screening is to reduce the risk of cervical cancer by looking for, and treating, lesions that have the potential to become cancerous [ 6 ]. The OCSP and other organized screening programs throughout Canada, use cytology testing (e.g. Pap tests) and this has been largely responsible for a dramatic decline in cervical cancer incidence [ 7 ]. At the start of this study (September 2019), the OCSP was recommending that everyone with a cervix who has been sexually active, commence cytology-based screening (i.e. a Pap test) at the age of 21 (they currently recommend commencing screening at the age of 25). In Ontario, Pap tests are typically done by an individual’s primary care provider – family doctor or nurse practitioner – and sometimes in public health units, sexual health clinics and community health centres in Ontario. In some rural northern parts of the province, Pap tests are offered in mobile screening coaches. [ 1 ] Pap tests are publicly funded through the Ontario Health Insurance Plan (OHIP) [ 8 ]. Using data from the 2017 Canadian Community Health Survey, Benjamin et al [ 9 ] found that women identifying as South Asian were the least likely to self-report being adherent to cervical screening recommendations in Ontario (OR: 0.44, 95%CI: 0.20–0.94). South Asian women have the lowest rates of cervical cancer screening among major ethnic groups in Ontario, and a higher burden of cervical cancer [ 10 – 14 ]. In their study of cancer screening in Ontario, Lofters et al.[ 13 ], found that South Asian patients were the most vulnerable to underscreening for cervical cancer, as the adjusted odds ratio of screening for South Asian women compared to non-immigrant women in urban primary care practices in Ontario, was 0.61 (95% CI 0.59–0.64). Low rates of cervical screening have been attributed to different factors within people’s lives and experiences. In their studies of South Asian women living in Hong Kong, Chan and So [ 15 , 16 ] identified a widely held and impactful perception amongst South Asian women that screening is unnecessary if one has no symptoms. In their multimedia intervention study of new and repeated cervical screening participation amongst South Asian women, Chan and So [ 15 ] found that participants believed that screening was unnecessary because their health status was fine and they were not experiencing any physical symptoms or discomfort. Additionally, in their cross-sectional study where they surveyed close to 800 South Asian women, Chan and So [ 16 ] found the belief they did not need a test if they felt well, to be one of the most significant barriers associated with a participant’s uptake of cervical screening. Additionally, emotion-laden responses such as fear, anxiety and shyness around getting a Pap test have been found to prevent many South Asian women from being screened. [ 10 , 17 – 22 ] In a mixed-methods study around underscreening in Ontario, South Asian women, amongst other under- or never-screened women, cited reasons such as privacy and discomfort with pelvic examinations as reasons for avoiding cervical screening. [ 23 , 24 ] Relatedly, studies of other groups of women have also shown how superstitious beliefs can prevent screening. In their study of Iranian women’s perception of cervical cancer prevention, Khazaee-Pool and colleagues [ 25 ] found that women believed discussing cervical cancer could put them at risk of developing it, or that the ‘evil eye’ could cause cervical cancer. While this study does not include South Asian women, it is possible that there may some similar beliefs due to similarities in culture. Among South Asian immigrants to Canada, the USA and the UK, acculturation – as measured by an individual’s length of residence and language mastery – has been studied as a determinant of screening uptake, with greater acculturation leading to greater uptake [ 21 , 26 – 29 ]. Other factors associated include the impact of personal experiences with ill health and previous screening, leading to a greater risk perception and conviction around the benefits of screening [ 30 ]. Feelings of self-efficacy to do something positive for one’s own health can be empowering and also encourage women to seek out screening [ 31 ]. Lastly, challenges with the Pap test itself can include shyness, physical discomfort and feeling like their privacy has been invaded, leading many to avoid cervical screening [ 23 , 24 ]. These studies highlight many reasons why people may not be screened and are often focused specifically on the Pap test itself and not some of the contextual factors that shape screening decisions. Additionally, a closer look at Ontario is needed to uncover more unique and tailored approaches to addressing underscreening. While many qualitative, quantitative and mixed methods studies have identified themes in underscreening and barriers to Pap tests, what is needed is an approach that better engages South Asian women and other relevant stakeholders to comprehensively identify the range of direct and indirect impacts on cervical screening uptake to better understand the how screening decisions are made within the context of people’s lives. The persistence of these rates of underscreening, combined with what is known about some of the barriers that impact uptake, make it ever more important to understand how the different facets of South Asian women’s lives and experiences within and outside of healthcare impact their cervical screening uptake. To effectively address the complexities that cause these disproportionate rates of underscreening, it is necessary to understand South Asian women’s own perspectives on screening to improve programs like OCSP and those in other jurisdictions, to inform effective interventions not only in Ontario, but internationally. Using concept mapping (CM), we aimed to engage a range of stakeholders to build a conceptual framework that reflects how South Asian women’s lives and experiences impact their cervical screening practices in Ontario, and to better understand the interrelationship of these different ideas. We need to move beyond traditional methods that simply identify and quantify reasons for underscreening, to use methods that allow people to lead, collaborate and develop action plans to address the issues they are experiencing and uncover the interrelationships amongst known and newly identified factors. This is the first concept mapping study to focus on the decision-making of South Asian women in Ontario around cervical screening, to understand the larger picture of how aspects in their lives and experiences impact cervical screening. In this study, South Asian identity refers to those that self-identify with a South Asian ancestry (i.e., not necessarily of South Asian birth). South Asian ancestry can include the following countries: Afghanistan, Bangladesh, Bhutan, India, Maldives, Nepal, Pakistan, Sri Lanka. This also includes people who can trace their origins back to South Asian countries, such as Indo-Guyanese people. South Asian refers to ancestry and includes those that have immigrated to Canada and those that were born in Canada. This CM study is guided by the research question: how do the lives and experiences of South Asian women living in Ontario shape their decisions around getting screened for cervical cancer? Additionally, we set out to understand how these experiences cluster into larger themes. 2. Methods 2.1 Study Design The social-ecological model (SEM) posits that there are multiple levels of influence on health behaviours. Social and physical environments are important contextual factors for people’s health behaviours. SEM is useful for conceptualizing multiple levels that determine health behaviours and are therefore necessary for designing comprehensive multilevel interventions. [ 32 ] This is particularly important when understanding uptake of cervical screening amongst South Asian women, as multiple influences at multiple levels of their social and physical environments can encourage or create barriers to cervical screening. As such, the use of SEM is reflected in how we explored the multi-level aspects of the lives and experiences of South Asian women that impact uptake of cervical screening. For this study, a Concept mapping (CM) study design was used. CM was developed Trochim and Kane [ 33 , 34 ] to collect ideas from a group of individuals, identify how they organize the interrelationship amongst the ideas, and to represent their group thinking with graphics. The result of this method is a conceptual framework that reflects how a group views a particular topic [ 34 ]. CM has many participatory aspects. Participants are involved in the generation of ideas, and the organizing and prioritizing of data, labelling of findings and discussion of relevance. They are given an opportunity to challenge results and discuss application of findings. The processes within CM combine qualitative approaches with quantitative analytical tools to create a display of the relationship between ideas [ 33 ]. CM is an appropriate method to use when there is a group whose experiences and needs may not be traditionally represented amongst larger groups or the status quo [ 34 ]. It provides an opportunity to develop a joint meaning and group consensus [ 35 ]. We emphasized the participatory aspects of CM in our study through engaging participants in the four main activities that are described below (section 2.6 , Fig. 1): brainstorming, sorting, rating and map interpretation. Figure 1. Flowchart of concept mapping activities, displaying order each activity was completed in and the number of people that participated in each activity. CM is unique and innovative in its qualitative approach. To begin with, CM draws some of its strength from the inclusion of both individual- and group-oriented activities. CM is comprised of activities where participants work independently avoiding group dynamic issues of conformity bias, an individual monopolizing the discussion as well as participants needing to process their perceptions and express their personal experiences in front of people (e.g., researchers, other participants) [ 36 ]. This is particularly useful when studying cervical screening amongst South Asian women, as it can be a very difficult topic for people to discuss. One of the major strengths of CM is the inclusion of participants in the interpretation and analyses. Unlike researchers leading coding of interview and focus group data, in CM the researcher is there to manage the process while participants contribute directly to data analysis, discussion and interpretation of the findings [ 36 ]. Additionally, CM moves beyond simply identifying and exploring themes, to also include analysis of how the themes relate one another, and this is a stronger approach to understanding complex issues than interviews and focus groups [ 36 ]. Lastly, the structure of CM allows for a rather complex process of idea exploration to occur during a relatively short time – an important aspect of community-based research which keeps people engaged and produces timely results. 2.2 Sampling Strategy and Recruitment While initially designed for groups of 40 or fewer in-person participants, online tools make it possible to have larger and/or geographically dispersed groups [ 34 ]. For this study, a range of stakeholders were engaged in the CM process to understand how the lives and experiences of South Asian women influence their decisions around cervical screening. The stakeholders included: i) South Asian women living in the Greater Toronto Area (GTA), ii) community champions – trusted, female members of the South Asian community with pre-existing connections with local community groups and organizations, iii) people who work in organizations that serve South Asian women in the GTA, and iv) healthcare providers serving South Asian patients. Since the goal of CM is to achieve a broad sample of ideas and not a representative sampling of persons, nonrandom sampling was used [ 34 ]. Purposive sampling for heterogeneity was used to select participants that were most likely to yield appropriate and useful information [ 34 , 37 ]. Eligibility criteria for South Asian women included: self-identify as South Asian, and is or has ever been eligible for cervical screening in Ontario (at least 21 years of age, has been sexually active, has a cervix). All other participants such as healthcare providers and community service providers, had to identify as being in a role that works or serves South Asian women. These participants were also asked to gauge their familiarity with cervical cancer screening amongst South Asian women. All participants had to be at least 18 years of age and speak conversational English. 2.3 Recruitment Procedures Recruitment primarily occurred through poster distribution at groups and organizations that have a high South Asian client population, and through word-of-mouth. A community champion shared the flyer with more informal groups on social media, WhatsApp, and in her personal circle. Service providers were primarily recruited through email and poster distribution on mailing lists at hospitals, primary care teams and other health and social services. 2.4 Demographics Each time they participated, participants were asked to select one of the following five categories: i) I identify as South Asian; ii) I work in a role or an organization that serves South Asian women and I identify as South Asian; iii) I work in a role or an organization that serves South Asian women and I do not identify as South Asian; iv) I work as a primary care provider and I identify as South Asian; or v) I work as a primary care provider and I do not identify as South Asian. The first category is considered ‘service users’ and the remaining categories are referred to as ‘service providers.’ Service providers were also asked how long they have been in their area of work, and service users were asked if they had ever had a Pap test. All participants were asked their age and gender identity. In the sorting and map interpretation activities (described below), service providers were additionally asked for the approximate percentage of South Asian people that they serve, and further details about their roles in healthcare and the community. 2.5 Concept mapping activities To prepare for CM, the researcher must first determine the focus, which is typically a sentence completion prompt or a directive that asks participants for special statements or expressions of interest about a topic [ 33 ]. There are four data collection activities that follow: brainstorming, sorting, rating and map interpretation. This is summarized in Fig. 1. All CM activities were completed between September 2022 and August 2023. This paper presents the data from the brainstorming, sorting and map interpretation activities. The brainstorming data show us what experiences in the lives of South Asian women were identified as impacting cervical screening, and the sorting data shows us how these brainstormed ideas cluster into larger themes. Analysis of the rating data has been published elsewhere [ 38 , 39 ]. 2.5.1 Brainstorming activity The objective of the brainstorming round was to encourage participants to think broadly about factors within the lives and experiences of South Asian women that impact their decision to get screened for cervical cancer. With input from the study team and members of the community, the following prompt was developed, and participants were asked to provide up to 10 responses to the prompt: One thing about the lives and experiences of South Asian women that influence their decision, in a positive or negative way, to get screened (i.e., a Pap test or HPV test) for cervical cancer is... The brainstorming activity used an anonymous link so participants could feel more comfortable to express their thoughts and to also make participation low-barrier (e.g. no passwords or usernames). This was particularly important for this activity, as we wanted to include as many people as we could. The demographic questions were set up as the first part of the activity, so people did not accidentally miss the questions. These were submitted and then participants were taken to the brainstorming activity. With this link, participants were able to see what statements had already been collected from other participants and could provide additional statements that they believed were relevant. Participants could also review the existing statements and choose to not add anything additional. Lastly, they could come back to the activity to add in additional statements they thought of later. The initial brainstormed statements were reduced into a shorter manageable number of statements composing the master list that was used in the remaining CM activities 2.5.2 Sorting activity In the sorting activity, participants were asked to provide their perceptions on the similarity between the items in the master list. The purpose of this was to identify how participants view the interrelationship of the ideas [ 34 ]. Participants were asked to sort the statements from the master list described above into piles that made sense to them. The sorting task was done independently. Most participants completed this activity online with a personalized link where they could save their work and return to it later. Due to the relatively challenging nature of this task, an in-person group was held in a community centre, so people could complete the activity with a member of the team (KD) there to provide real-time instruction. Findings from the application of hierarchical cluster analysis enabled the generation of point cluster maps. These maps show us how participants sorted the statements and thought about them thematically. A group of participants reviewed, revised and confirmed the map in the final CM activity: map interpretation. During this session, participants also discussed and agreed on a label for each grouping (i.e., cluster). 2.5.3 Data collection Data collection and analyses were managed through Concept Systems Group Wisdom. The group map interpretation session was held over Zoom. Participants were given a letter of information before each activity and provided their implied consent through their participation in the activity. Participants were given an e-gift card upon completion of each activity: $ 30 for brainstorming, $ 40 for sorting and $ 30 for map interpretation. Participants were not required to complete all the CM activities. Some participants who were recruited during the brainstorming activity participated in all activities of the study whereas others participated in 1 to 3 activities. Figure 1 describes the order of the concept mapping activities. 2.6 Data Analysis 2.6.1 Creation of master list from brainstormed statements The data from the brainstorming round was cleaned to remove duplicate, incomplete or off-topic responses. The purposes of this are to obtain a list of unique items, where each item represents a single idea that is relevant to the CM focus, and to reduce the number of items to a manageable list for participants to sort and rate [ 28 ]. Two research team members (KD and AL) reviewed each statement that was removed, for agreement. A meeting with the research team was held to confirm the decisions made during item reduction. The draft master list was then reviewed for clarity by the community champion, a service provider and two members of the research team (AL and PO) to create the final master list to be used in the subsequent CM activities (e.g. sorting). Minor edits were made for clarity, including grammar. 2.6.2 Hierarchical cluster analysis of sorting data The sorting activity is the basis for the point and cluster maps that are created in GroupWisdom. First, a similarity matrix is created that indicates the number of participants that sorted each pair of statements together [ 30 ]. Then multidimensional scaling (MDS) of the summed up similarity matrix uses the similarity data and represents them as distances in Euclidean space, locating each statement as a separate point on a two-dimensional (X,Y) map [ 34 , 40 ]. In MDS the key diagnostic measure is the stress value. This is a metric for indicating the degree to which the MDS fits the original similarity matrix [ 41 ]. A lower stress value is preferred and suggests a better overall fit [ 34 ]. Kane and Trochim state that 95% of concept mapping projects are likely to have stress values that range between 0.205 and 0.365 [ 34 ]. Hierarchical cluster analysis groups individual statements on the point map into clusters of statements that reflect similar concepts [ 41 ]. The location of the statement points on the map and the resulting distance between them, show us how people sorted them and thought about their relatedness. Points that are far apart mean than people did not frequently group these together, and therefore did not see them as related. Points that are closer together were frequently sorted together, indicating that participants often found them related to each other. In this step of the analysis, the researcher is able to see the solutions for different number of groupings and make decisions about which set of groupings best fit the data, that is yields the clusters with the best internal cohesion for the statements, based off where the point representing the statement is located. This shows us how participants think about the ideas thematically. 2.6.3 Bridging and anchoring analysis After MDS and the hierarchical cluster analysis, a bridging value ranging from 0 to 1 is computed for each statement and then an average for each cluster. This bridging and anchoring analysis describes how each statement and cluster on the map is related to the statements around it [ 41 ]. ‘Anchors’ have lower values which indicate the statement was more often sorted by participants with others close to it on the map [ 41 ]. These reflect greater internal cohesion of a cluster. Higher values known as ‘bridges’ indicate statements that were less often sorted together by participants and sorted with statements on the other side of the map [ 41 ]. 2.7.4 Map interpretation session The final activity was a session where a group of participants were brought back to see the CM results and have a discussion on its utility [ 34 ]. This is a form of member checking. During this session, participants were presented with some of the draft cluster maps that were suggested by GroupWisdom, to discuss and choose a version that makes the most sense to them. Once a map was agreed upon, participants came up with labels for each cluster and discussed regions within the map. 3. Results 3.1 Participant sample During the brainstorming activity, submitting the demographics questions was one step in the process of accessing the main activity through the anonymous link. However, for those who came back multiple times to brainstorm additional responses, they would have had to submit the demographic questions again, before accessing the activity. As a result, it is not possible to know exactly how many people participated, as coming back to the activity more than once would count the same participant multiple times in the demographic questions. We know participants came back multiple times as there were more completed demographics questions than people that were invited to participate. Using the completed demographics questions and available time stamps, the number of participants estimated for the brainstorming round is between 44 and 72: 44 sets of demographic questions were completed and an accompanying list of brainstormed statements submitted; an additional 12 sets of demographic questions were completed and at least one statement was added to the existing list but the activity was not submitted; 16 sets of demographic questions were completed but no other action was taken, which may mean the statements were looked at with nothing additional to add. We recruited 22 participants to complete the sorting activity. Half of them were service providers and the other half were service users. The map interpretation session was attended by 9 participants who had completed both brainstorming and sorting activities. Four of them were service users and 5 of them were service providers. All the participants in the sorting and map interpretation round also identified as South Asian, regardless of if they were service users or providers (e.g. healthcare, community). Table 1 details the demographics we collected in the brainstorming, sorting and map interpretation activities. Almost all the participants identified as South Asian and female, with the majority of them being service users and having had at least one Pap test before. There was a Table 1 a. Participant demographics asked during the brainstorming, sorting and map interpretation activities Participant question Options Brainstorming (n=72) Sorting (n=22) Map Interpretation (n=9) What best describes your role in this study? I identify as South Asian 52 11 4 I work in a role or an organization that serves South Asian women AND I identify as South Asian 13 8 4 I work in a role or an organization that serves South Asian women AND I DO NOT identify as South Asian 1 0 0 I work as a primary care provider AND I identify as South Asian 2 3 1 I work as a primary care provider AND I DO NOT identify as South Asian 0 0 0 Other 4 0 0 If you work in healthcare or in the community, how long have you been in this area of work? 1 to 5 years 5 0 0 6 to 10 years 3 4 3 11 to 15 years 4 1 1 16 to 20 years 2 2 0 20+ years 4 3 1 Have you ever had a Pap test? Yes 46 13 9 No 5 1 0 Unsure 1 0 0 What is your age? 21 to 30 8 1 1 31 to 40 19 6 2 41 to 50 24 11 5 51 to 60 13 4 1 61 to 70 8 0 0 Do you identify as Female 71 22 9 Male 1 0 0 Other 0 0 0 Table 1 b. Additional participant demographics asked during the sorting and map interpretation activities Participant question Options Sorting (n=22) Map Interpretation (n=9) If you work in healthcare or in the community, what percentage of the population that you serve are South Asian? 9% to 85% 9% to 85% If you work in healthcare or in the community, which of the following describes your role/work?* (check all that apply) Allied health professional (e.g. nurse, physiotherapist, dietician) 2 1 Cancer care (screening, diagnosis, treatment) 2 2 Community Outreach 2 1 Health promoter 3 2 Healthcare provider working in a hospital (e.g. hospitalist, inpatient nurse, mammography technician) 2 1 Primary care provider 3 1 Program coordinator 1 0 Researcher 3 2 Settlement services 2 1 Volunteer 2 1 *only options that were chosen, are displayed here. wide range in the years that service providers had been engaged in their work, however the sorting and map interpretation round did not include people with less than 6 years of experience in their area of work. The majority of participants were between the ages of 31 years and 60 years, indicating that age-wise, most participants had not just become eligible, nor were they close to being ineligible, for cervical screening. During the sorting round, service providers indicated that between 9 and 85 per cent of the population they serve, is South Asian. During these activities, we also had representation from many different roles in health care and community services. We were successful in recruiting many South Asian women from a range of ages. While we had also strived to recruit service providers and were successful in recruiting many who worked in roles and organizations that serve South Asian women, we fell short in recruiting a large number of primary care providers such as family physicians and nurses who primarily do cervical screening in Ontario. Additionally, we only recruited 5 people who had never had a Pap test before. 3.2 Experiences in the lives of South Asian women that shape their decisions around cervical screening: results from the brainstorming activity Participants brainstormed a total of 210 statements and after idea synthesis, 45 unique and distinct statements were identified, to create the conceptual domain. These statements are listed in table 2 and have been each assigned a number that is referenced throughout the results section and figures. Table 2: Master list statements from the brainstorming round. Numbers are only to identify the statements throughout the text and figures. Numbers do not indicate rank value or any other value. Statement ID # Statement 1 The belief that you should not "touch" things or go under the knife (meaning any medical procedure) because it brings more harm than good 2 Cultural expectations or pressures that the idea of "modesty" prevents women in the South Asian community from getting screened for cervical cancer. 3 Women do not go to the doctor unless they are having an issue 4 Appointments are not available at times that are convenient for patients 5 Women do not feel comfortable with their healthcare provider 6 Lack of access to cervical cancer screening information shared by trusted sources 7 Pap test appointments are viewed as time consuming 8 Women believing that a Pap test can lead to an infection 9 A woman's lack of understanding and education around cervical cancer 10 Needing to communicate with healthcare providers in English is a barrier for South Asian women to be screened for cervical cancer 11 If a woman believes that cervical cancer is not a severe condition, this can discourage them from getting screened 12 Men in South Asian households make decisions about females getting screened 13 Education about cervical cancer is needed for men in South Asian households 14 A woman's belief that cervical cancer screening is not necessary if you have only had one sexual partner 15 Women need reminders to know when they are due for cervical cancer screening 16 Negative cultural beliefs behind gynecologist visits leads to South Asian women feeling shame when booking appointments. 17 South Asian women are not comfortable to discuss their sexual history 18 Not enough media coverage of cervical cancer screening within the South Asian community 19 Pap tests can feel painful 20 Women may view a Pap test as a dirty procedure where you may bleed afterwards 21 Preventative care is not well understood by South Asian women 22 Prior negative experience with a Pap test discourages South Asian women from getting screened 23 South Asian women may be worried about their family finding out they are sexually active 24 Not having a healthcare provider of a similar cultural background makes intimate tests such as a Pap test, uncomfortable 25 Sex is a taboo topic amongst South Asians 26 Any tests related to sex can be considered dirty 27 Women believe that if they have an HPV vaccine, they do not need to be screened for cervical cancer 28 Women may be shy to have an examination in that area of their body 29 Foreign trained physicians may not encourage their patients to do cancer screening, as preventative care may not have been common in their home countries. 30 South Asian women may prioritize looking after their families over their own health 31 South Asian women may be too busy with their jobs or careers to take care of their own health 32 Lack of support from family members to go and get screened 33 Lack of support from friends to go and get screened 34 Women are afraid to find out if they have cancer 35 Cervical cancer screening is not openly discussed in the South Asian culture 36 Women may be uncomfortable with going to the doctor in general 37 Women hear other women share negative experiences about getting a Pap test 38 The belief that if a cervical cancer diagnosis is your fate or destiny, there is no reason to get screened 39 Belief that you only have to worry about cervical cancer if you have a problem with your menstruation 40 Family doctor does not encourage cervical cancer screening during appointment 41 Women may not know what a Pap test involves 42 Women may not know the purpose of a Pap test 43 Women do not have a family doctor 44 South Asian women will only get screened when symptoms arise 45 South Asian women won't get screened because they think they cannot get cervical cancer. Statements about South Asian culture came up often during the brainstorming. Participants talked about how it can lead to discomfort during healthcare visits related to women’s health: ‘negative cultural beliefs behind gynecologist visits leads to South Asian women feeling shame when booking appointments’ (statement #16); and ‘cultural expectations or pressures that the idea of "modesty" prevents women in the South Asian community from getting screened for cervical cancer’ (#2). Participants also talked about how a lack of openness to discuss cervical screening is an issue (#35). What was particularly common amongst the statements were references to sexual intercourse. Statements such as #25 and #26 show how discomfort around the topic of sexual intercourse can impact how people view and participate in cervical screening, as being sexually active is an eligibility criterion. With discussing sexual intercourse being taboo amongst some South Asians, it also introduces discomfort around discussing sexual history (#17) and even a fear of friends and family finding out a woman is sexually active (#23). The brainstorming activity also uncovered a range of personal beliefs that women may have. Fatalistic attitudes (#38) show that some women may not get screened because they think if it is their destiny to get cancer, screening or any other preventive measure is pointless. Statements also reflected how fear and uncertainty can stand as a barrier to screening (#1 and #34). Additionally, some misconceptions that may convince South Asian women that they do not need cervical screening came up (#14, #27, and #45). Additionally, statement #11 demonstrates how some women may not feel the need to get screened, if they do not view cervical cancer as particularly threatening to their well-being. Statements about the Pap test itself, were largely present in the brainstormed list. A lack of understanding around Pap tests is highlighted in statements such as #41 and #42. The statements also demonstrated that the Pap test itself can be a barrier to continued participation in cervical screening as it can be viewed as painful (#19), possibly leading to an infection (#8), and time consuming (#7). Having or hearing about prior negative experiences with Pap tests can also impact future screening participation as shown in the statements #22, #28 and #37. 3.3 Sorting and creation of cluster map to understand how participants thought experiences relate to each other and cluster into larger themes The statements in the master list were then sorted by participants and this sorting data was used to populate a map based on how often the statements were sorted together and create the basis for the conceptual framework. Of the 22 participants that completed sorting, data from 18 were included in the analysis. Four participants’ sorting data was not used because of errors in their sorting (e.g. too few statements were sorted, statements were sorted multiple times). Figure 2 presents the cluster map with the location of each statement, represented as a numbered point that corresponds Table 2. The stress value is 0.2780 after 16 iterations, suggesting a good overall fit between the sorted data and the produced map. During the map interpretation session, participants agreed on the 6-cluster solution for the map as they agreed with the ways in which statements were grouped together and the distinctions that were made by these grouping. There was some discussion about moving individual statements from one cluster to another, but overall there was no complete agreement amongst the participants for moving any individual statement from one cluster to another. As a result, no statements were moved. The final cluster labels determined during the map interpretation session were: 1) Personal beliefs and misconceptions around cervical cancer; 2) Education and knowledge issues around cervical cancer; 3) Cultural beliefs and influences specific to sexual health; 4) Barriers to prioritizing uptake of cervical screening; 5) System/ infrastructure gaps or inadequacies; and 6) Lack of comfort and supportive relationships in healthcare. During the session, two distinct map regions were also identified. Cluster 1 and 2 in the bottom right corner of the map, were labelled as a part of the map that is mainly representative of ‘individual-level factors.’ Clusters 3, 4, and 6 were seen as the area of the map that represented ‘social factors.’ Cluster 5 was believed to be distinct from the two regions as it was specific to healthcare spaces and delivery. This showed us, thematically, what about the lives and experiences of South Asian women impact their decisions to get screened for cervical cancer. 3.3.1 Cluster 1: Personal beliefs and misconceptions around cervical screening This cluster of statements represented fatalistic attitudes (#38,#1) and misconceptions that convince people they do not need to get screened (#14), including the belief that if they only ever had one sexual partner they do not need to be screened, or simply that they cannot get cervical cancer (#45). 3.3.2 Cluster 2: Education and knowledge issues around cervical cancer In this cluster, broad topics such as understanding preventative care, as well as more specific topics such as details about a Pap test, were covered. Overall, education around cervical cancer and related screening largely made up this cluster. There were some topics that seem closely related to Cluster 1 – a matter that was also brought up by two participants during map interpretation – and those were the statements that reflect misconceptions (#27 and #39). While these statements were not located close enough to be placed in Cluster 1 by GroupWisdom, it is important to note that Cluster 1 and Cluster 2 are located close to each other in the map, further supporting a demarcation of the ‘individual-level factors’ region in the bottom right corner of the map. 3.3.3 Cluster 3: Cultural beliefs and influences specific to sexual health In this cluster, the statements reflect the impact of South Asian culture on sexual health. Statements such as #25 and #17 demonstrate some of the social barriers that exist for women to openly discuss their sexual health. The statements in this cluster also show how these cultural beliefs can then impact perceptions of Pap tests. 3.3.4 Cluster 4: Barriers to prioritizing uptake of cervical screening This is the largest cluster on the map. Here, statements around aspects of people lives and experiences that impact how and if they prioritize screening, were largely represented. Statements #30 and #31 demonstrate how aspects of people’s day-to-day lives can impact health actions such as cervical screening. Overall approaches to health and healthcare such #3 and #44 demonstrate how cervical screening may go unprioritized because people are asymptomatic, as well as experiences with the Pap test itself. seemed to be a driver for people to avoid cervical screening 3.3.5 Cluster 5: System/infrastructure gaps or inadequacies Cluster 5 was seen as distinct from the other clusters and regions by participants in the map interpretation session. This cluster contains statements related to patient-provider interaction (#29, #40), provider characteristics (#24), language needs (#10), availability of providers (#4) and overall access to healthcare (#43). 3.3.6 Cluster 6: Lack of comfort and supportive relationships in healthcare The final contains statements around the impact of family and friends as sources of support to get screened (#32 and #33). Other statements in this cluster showed the role of discomfort with healthcare providers (#5 and #36)– and having an intimate examination (#28). These statements suggest that support from friends and family, as well as comfort in the screening procedure, impact screening. ta 3.4 Bridging values Table 3 presents the average bridging value for each cluster. Cluster 2 (education and knowledge issues around cervical cancer) has an average bridging value close to 0, indicating that this cluster is conceptually clear from the rest of the map, and that the statements in this cluster were very often sorted together by participants. The low bridging values indicate that this is a distinct area of the map with little to no relationships with other areas of the map. This supports the decision to not combine Clusters 1 and 2 together – as proposed in the 5 cluster solution - and to keep them distinct. This tells us that education and knowledge around cervical cancer are viewed as distinct factors, that play a role in cervical cancer screening. Table 3: Bridging values for each cluster. Cluster ID numbers are only to identify the clusters throughout the text and figures. Cluster ID numbers do not indicate rank value or any other value. Cluster ID # Cluster Name Bridging 1 Personal beliefs and misconceptions around cervical screening Avg 0.27 2 Education and knowledge issues around cervical cancer Avg 0.08 3 Cultural beliefs and influences specific to sexual health Avg 0.28 4 Barriers to prioritizing uptake of cervical screening Avg 0.61 5 System/infrastructure gaps or inadequacies Avg 0.27 6 Lack of comfort and supportive relationships in healthcare Avg 0.48 Clusters 1 and 3 also have relatively low average bridging values, further indicating this area of the map is conceptually clear (i.e. participants did not vary in how they viewed them as related to other statements in this area of the map) with statements in this area often being sorted with adjacent statements and less likely with those across the map. This is also true for Cluster 5 which is located on the other side of the map and has an average bridging value of 0.27. This further supports the participants in the map interpretation session who thought Cluster 5 was distinct from the rest of the clusters and regions and was therefore a region of its own. Overall, these values also tell us that there is greater cohesion amongst the statements within the three clusters, and low variability amongst participants’ sorting. These statements are closely related to each other, compared to areas of the map with higher values, meaning that the ideas in these clusters are not related closely to other areas of the map. Parts of the map with higher bridging values indicate statements that are ‘bridges’ between areas of the map. Cluster 4 has a relatively higher average bridging value of 0.61indicating a higher variability in how participants interpreted and sorted the statements within the cluster. This does not mean that these statements were not as conceptually clear, but rather that participants varied in how they saw them as related to other statements on the map. Examining areas of the map with many anchored statement areas where participants were consistently grouping items together, we can see that statements in the bottom right corner of the map (Figure 2) have very low bridging values. Statements #8, #11 and #27 have very low bridging values. This indicates that participants consistently sorted these statements together, and this area of the map is conceptually clear and distinct from other ideas throughout the map. These statements are anchors. This supports the decision to not move these individual statements out of cluster 2, as mentioned earlier. 4. Discussion This concept mapping analysis identified how individual-level factors around personal beliefs and misconceptions, as well as education and knowledge issues around cervical cancer, impact screening amongst South Asian women. We found that larger, social impacts around themes of cultural beliefs and influences specific to sexual health, barriers to prioritizing uptake of cervical screening, as well as lack of comfort and supportive relationships in healthcare, can also play a role. Lastly, we found that despite these social and individual-level factors, issues within the healthcare system can be a determinant around access to screening. 4.1 Implications for policy and health intervention Currently the province of Ontario is still working to recover from screening shutdowns and widening of screening gaps during the COVID-19 pandemic. The backlog of cancer screening and services in the province is around 1.1 million from the first year of the COVID-19 pandemic alone [ 42 ]. Furthermore, with increasing evidence around the efficacy of HPV screening, Ontario will be moving towards HPV testing in the coming years [ 7 ] with some parts of Canada already making the switch [ 43 , 44 ], The World Health Organization has set out with the goal of eliminating cervical cancer by 2040 through screening with a high performance test equal to, or better than, an HPV test [ 45 ].HPV testing is critical to cervical cancer prevention, and implementing routine HPV testing can put all countries on the path to eliminating cervical cancer [ 45 ].In line with the WHO goals, the Canadian Partnership Against Cancer (CPAC) currently has a goal of elimination of cervical cancer in Canada by 2040 through HPV immunization and screening [ 46 ]. The findings from this concept mapping analysis highlight critical points of intervention where current rates of underscreening can be addressed, while also identifying important considerations for implementing HPV screening. For example, discomfort with the Pap test – physical pain, shyness, concerns around bleeding and infections – was highlighted by many statements from the brainstorming round. Studies have shown the acceptability of HPV self-sampling [ 23 , 24 ] – a test that is less physically invasive and can be self-administered when and wherever someone chooses – for cervical screening amongst under or never screened (UNS) people. This CM analysis further underscores how promising HPV self-sampling can be for groups of people that are largely under screened. The role of culture was present in many ways, including how and if sex is openly discussed, as well as gender roles and decision-making within South Asian households. While challenging, addressing sex being a taboo topic, and educating male partners and other household members about cervical cancer, will be an important area to address in the coming years. Additionally, the role of comfort and supportive relationships could see the increased implementation of peer support programs [ 47 ] that has already been shown as promising in cervical screening. This can also address the many statements around education and knowledge issues, as well as misconceptions that exist within the South Asian and other under screened communities. 4.2 Comparison with other studies Other studies done in this area, similarly identified the role of fatalistic attitudes in cervical screening. Literature has shown that some South Asian women have personal convictions that getting cancer is predestined or karma for past actions, so there is little belief that screening can make a difference [ 21 , 29 , 48 , 49 ]. Misconceptions such as the purpose of Pap tests being for sexually transmitted infections [ 19 ] or that healthy lifestyles prevent cancer [ 20 ] can also cause women to choose not to be screened. Literature shows that physicians can be seen as authoritative and trustworthy, and if they do not recommend screening, women may not think it is important [ 10 ], and this was similarly seen in the concept map where patient-provider interactions was found to be a distinct area. Past experiences, including feeling rushed and unheard and painful examinations can discourage screening [ 25 , 50 ], which can further explain the statement around how some women may generally be uncomfortable going to the doctor. We also found that the social identity of healthcare providers matter. Other studies show that the gender of health care providers, can play a role, as many South Asian women have shown a preference for a female provider to perform examinations and Pap tests, and asking for a referral to a female provider from a male provider is not always successful [ 29 , 17 , 51 ]. Lastly, literature further elaborates around the stigma within certain South Asian communities around sexual activity, as a woman getting screened would imply certain details about their sexual activity including the virginity of unmarried women [ 17 , 18 , 25 , 29 ]. While literature shows that family and friends can influence the uptake of screening by validating concerns, sharing experiences and providing advice, they can, in some cases also be discouraging or forbid screening [ 21 , 25 , 50 ]. Our analysis further elaborated on this by uncovering the role of men and other household members in the decision to get screened, and how education around cervical screening is also needed for them. Next steps for this study would be to look at the rating data to understand the nuanced differences between sub-groups in concept mapping (e.g. service users and service providers) to better understand the different valuing of the concept mapping themes. Additionally, further analysis of the CM data will highlight areas of impactful action. 4.3 Limitations The main limitation of our study is that conversational English was required of participants. Since concept mapping largely involves participants brainstorming and then interpreting statements, it would be challenging to accommodate multiple languages, even with the assistance of interpreters and translation, as the meanings of individual statements may be lost in between translations. Language poses a barrier for some South Asian women to receive healthcare, and therefore this study may exclude a subset of women who are UNS for cervical cancer. Additionally, while this study rationale assumes there are experiences and realities of South Asian women that are different from the larger population and therefore should be studied to understand underscreening in the South Asian community, it is also critical to understand the diversity amongst women who identify as South Asian. Amongst South Asian women, there is much diversity along such lines as ethnicity, religion, age, social class, sexual orientation, education and marital status. 5. Conclusions With the participant-driven method of concept mapping, we were able to uncover a range of factors in the lives and experiences of South Asian women that impact decisions around cervical screening, and the interrelationships amongst these factors. From this we were able to develop a conceptual framework to understand how the lives and experiences of South Asian women shape their decisions around getting screened for cervical cancer. While previous studies may have uncovered ideas similar to the 45 statements, this work goes a step further to show how people relate these individual ideas to each other and to the larger themes, within and outside healthcare. We uncovered particular issues with Pap tests, relationships impacting healthcare (providers, friends and family), personal beliefs, as well as knowledge issues around cervical cancer and preventative care. We identified specific cultural and social factors amongst South Asian communities that impact cervical screening, including sex being a taboo topic and gender roles that impact prioritization and decision-making. We also uncovered the larger interrelationships between statements considered to be barriers to prioritizing screening and other ideas throughout the map. The participants thematically organized the ideas into 6 different clusters, but overall saw delineation along the lines of individual, social and healthcare system level factors that impact cervical screening participation. The findings demonstrate that multiple interventions that cross-cut multiple levels are needed, as culture, society, healthcare, and other larger structures influence individual actions. Next steps in this work are to further analyse the data to understand priorities for action. Declarations Ethics Approval and Consent to Participate This study received Research Ethics Board approval (REB# 43281) from the University of Toronto. All participants provided their consent, prior to participating in the study. This study was conducted in accordance with the Declaration of Helsinki. Consent for Publication Not applicable. Availability of Data and Materials The datasets generated and/or analyzed during the current study are not publicly available due to maintaining the privacy and confidentiality of participants, but are available from the corresponding author on reasonable request. Competing Interests The authors declare that they have no competing interests. Funding This work did not receive any direct funding. Author’s contributions KD led the conceptualization of the study, formal analysis and writing. 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Cancer screening education: can it change knowledge and attitudes among culturally and linguistically diverse communities in Queensland, Australia? Health Promot J Austr. 2016; 27:140-147. Salman KF. Health beliefs and practices related to cancer screening among Arab Muslim women in an urban community. Health Care Women Int. 2012; 33: 45-74. Hulme J, Moravac C, Ahmad F, Cleverly S, Lofters A, Ginsburg O, et al. "I want to save my life": Conceptions of cervical and breast cancer screening among urban immigrant women of South Asian and Chinese origin. BMC Public Health 2016;16:1077. Gupta A, Kumar A, Stewart DE. Cervical cancer screening among South Asian women in Canada: the role of education and acculturation. Health Care Women Int. 2002; 23: 123-34. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Published Journal Publication published 22 Jan, 2025 Read the published version in BMC Public Health → Version 1 posted Editorial decision: Revision requested 13 Nov, 2024 Editor assigned by journal 13 Nov, 2024 Submission checks completed at journal 11 Nov, 2024 First submitted to journal 06 Nov, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5405035","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":377580811,"identity":"ae7e8ded-b6b3-4d0b-8cab-c8df3b0c09ea","order_by":0,"name":"Kimberly Devotta","email":"data:image/png;base64,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","orcid":"","institution":"University of Toronto","correspondingAuthor":true,"prefix":"","firstName":"Kimberly","middleName":"","lastName":"Devotta","suffix":""},{"id":377580812,"identity":"47eff992-7958-409f-8636-6997e197c243","order_by":1,"name":"Aisha Lofters","email":"","orcid":"","institution":"Women's College Hospital","correspondingAuthor":false,"prefix":"","firstName":"Aisha","middleName":"","lastName":"Lofters","suffix":""},{"id":377580813,"identity":"2857365c-4c12-4a0a-ac8d-800ed5820521","order_by":2,"name":"Jacqueline Bender","email":"","orcid":"","institution":"University Health Network","correspondingAuthor":false,"prefix":"","firstName":"Jacqueline","middleName":"","lastName":"Bender","suffix":""},{"id":377580814,"identity":"554d2bf8-5c85-4e0d-b62e-a0a6ca870c92","order_by":3,"name":"Patricia O'Campo","email":"","orcid":"","institution":"St. Michael's Hospital","correspondingAuthor":false,"prefix":"","firstName":"Patricia","middleName":"","lastName":"O'Campo","suffix":""}],"badges":[],"createdAt":"2024-11-06 19:08:13","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-5405035/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-5405035/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12889-025-21448-6","type":"published","date":"2025-01-22T15:57:30+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":71562800,"identity":"0e944ebf-2266-4733-a354-7147cc5969cb","added_by":"auto","created_at":"2024-12-16 17:13:06","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":80753,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eFlowchart of concept mapping activities, displaying order each activity was completed in and the number of people that participated in each activity.\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-5405035/v1/4c174bd5f1421fe6e5458b4d.png"},{"id":71562799,"identity":"765ce595-f75b-40ea-b8b1-e85c9083bfde","added_by":"auto","created_at":"2024-12-16 17:13:06","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":68773,"visible":true,"origin":"","legend":"\u003cp\u003eCluster map labelled with themes and regions. Numbers are only to identify the statements and clusters throughout the text and figures. Numbers do not indicate rank value or any other value.\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-5405035/v1/9fb510d28a3ae28863af4005.png"},{"id":74858578,"identity":"ac2e574e-0a4c-4314-b93b-cdfa35c5314a","added_by":"auto","created_at":"2025-01-27 16:11:48","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1497391,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5405035/v1/620dbe58-b782-4f79-b55e-9e6af296810c.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Perceptions of cervical screening uptake amongst South Asian women: A concept mapping study","fulltext":[{"header":"1. Background","content":"\u003cp\u003eWith a lengthy pre-cancerous stage, regular screening can dramatically reduce both incidence and prevalence of cervical cancer. In 2024, approximately 1600 women will be diagnosed with cervical cancer in Canada, and an estimated 400 women will die from it. [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e] Today, cervical has become the fastest increasing cancer in females and we know that cervical cancer diagnoses and deaths are avoidable through regular screening. [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e] In the province of Ontario, Canada, the Ontario Cervical Screening Program (OCSP) was established in 2000 and at the time, 59% of eligible women were getting screened for cervical cancer in the province.[\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e] Participation rates, however, peaked at 67% in 2007\u0026ndash;2009, and have remained stable at approximately 60% since 2013 - well below provincial targets [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. Many groups, including newcomers, people who are older, of lower socio-economic status, in poorer health and otherwise marginalized, are amongst the most under- or never-screened (UNS) for cervical cancer in Ontario [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e] Cervical cancer is one of the few cancers with a readily detectable and treatable precursor stage, making prevention and screening the most reliable strategy [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. The purpose of screening is to reduce the risk of cervical cancer by looking for, and treating, lesions that have the potential to become cancerous [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. The OCSP and other organized screening programs throughout Canada, use cytology testing (e.g. Pap tests) and this has been largely responsible for a dramatic decline in cervical cancer incidence [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAt the start of this study (September 2019), the OCSP was recommending that everyone with a cervix who has been sexually active, commence cytology-based screening (i.e. a Pap test) at the age of 21 (they currently recommend commencing screening at the age of 25). In Ontario, Pap tests are typically done by an individual\u0026rsquo;s primary care provider \u0026ndash; family doctor or nurse practitioner \u0026ndash; and sometimes in public health units, sexual health clinics and community health centres in Ontario. In some rural northern parts of the province, Pap tests are offered in mobile screening coaches. [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e] Pap tests are publicly funded through the Ontario Health Insurance Plan (OHIP) [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eUsing data from the 2017 Canadian Community Health Survey, Benjamin et al [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e] found that women identifying as South Asian were the least likely to self-report being adherent to cervical screening recommendations in Ontario (OR: 0.44, 95%CI: 0.20\u0026ndash;0.94). South Asian women have the lowest rates of cervical cancer screening among major ethnic groups in Ontario, and a higher burden of cervical cancer [\u003cspan additionalcitationids=\"CR11 CR12 CR13\" citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. In their study of cancer screening in Ontario, Lofters et al.[\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e], found that South Asian patients were the most vulnerable to underscreening for cervical cancer, as the adjusted odds ratio of screening for South Asian women compared to non-immigrant women in urban primary care practices in Ontario, was 0.61 (95% CI 0.59\u0026ndash;0.64).\u003c/p\u003e \u003cp\u003eLow rates of cervical screening have been attributed to different factors within people\u0026rsquo;s lives and experiences. In their studies of South Asian women living in Hong Kong, Chan and So [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e] identified a widely held and impactful perception amongst South Asian women that screening is unnecessary if one has no symptoms. In their multimedia intervention study of new and repeated cervical screening participation amongst South Asian women, Chan and So [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e] found that participants believed that screening was unnecessary because their health status was fine and they were not experiencing any physical symptoms or discomfort. Additionally, in their cross-sectional study where they surveyed close to 800 South Asian women, Chan and So [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e] found the belief they did not need a test if they felt well, to be one of the most significant barriers associated with a participant\u0026rsquo;s uptake of cervical screening.\u003c/p\u003e \u003cp\u003eAdditionally, emotion-laden responses such as fear, anxiety and shyness around getting a Pap test have been found to prevent many South Asian women from being screened. [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan additionalcitationids=\"CR18 CR19 CR20 CR21\" citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e] In a mixed-methods study around underscreening in Ontario, South Asian women, amongst other under- or never-screened women, cited reasons such as privacy and discomfort with pelvic examinations as reasons for avoiding cervical screening. [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e] Relatedly, studies of other groups of women have also shown how superstitious beliefs can prevent screening. In their study of Iranian women\u0026rsquo;s perception of cervical cancer prevention, Khazaee-Pool and colleagues [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e] found that women believed discussing cervical cancer could put them at risk of developing it, or that the \u0026lsquo;evil eye\u0026rsquo; could cause cervical cancer. While this study does not include South Asian women, it is possible that there may some similar beliefs due to similarities in culture.\u003c/p\u003e \u003cp\u003eAmong South Asian immigrants to Canada, the USA and the UK, acculturation \u0026ndash; as measured by an individual\u0026rsquo;s length of residence and language mastery \u0026ndash; has been studied as a determinant of screening uptake, with greater acculturation leading to greater uptake [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan additionalcitationids=\"CR27 CR28\" citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. Other factors associated include the impact of personal experiences with ill health and previous screening, leading to a greater risk perception and conviction around the benefits of screening [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. Feelings of self-efficacy to do something positive for one\u0026rsquo;s own health can be empowering and also encourage women to seek out screening [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. Lastly, challenges with the Pap test itself can include shyness, physical discomfort and feeling like their privacy has been invaded, leading many to avoid cervical screening [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. These studies highlight many reasons why people may not be screened and are often focused specifically on the Pap test itself and not some of the contextual factors that shape screening decisions. Additionally, a closer look at Ontario is needed to uncover more unique and tailored approaches to addressing underscreening. While many qualitative, quantitative and mixed methods studies have identified themes in underscreening and barriers to Pap tests, what is needed is an approach that better engages South Asian women and other relevant stakeholders to comprehensively identify the range of direct and indirect impacts on cervical screening uptake to better understand the how screening decisions are made within the context of people\u0026rsquo;s lives.\u003c/p\u003e \u003cp\u003eThe persistence of these rates of underscreening, combined with what is known about some of the barriers that impact uptake, make it ever more important to understand how the different facets of South Asian women\u0026rsquo;s lives and experiences within and outside of healthcare impact their cervical screening uptake. To effectively address the complexities that cause these disproportionate rates of underscreening, it is necessary to understand South Asian women\u0026rsquo;s own perspectives on screening to improve programs like OCSP and those in other jurisdictions, to inform effective interventions not only in Ontario, but internationally.\u003c/p\u003e \u003cp\u003eUsing concept mapping (CM), we aimed to engage a range of stakeholders to build a conceptual framework that reflects how South Asian women\u0026rsquo;s lives and experiences impact their cervical screening practices in Ontario, and to better understand the interrelationship of these different ideas. We need to move beyond traditional methods that simply identify and quantify reasons for underscreening, to use methods that allow people to lead, collaborate and develop action plans to address the issues they are experiencing and uncover the interrelationships amongst known and newly identified factors. This is the first concept mapping study to focus on the decision-making of South Asian women in Ontario around cervical screening, to understand the larger picture of how aspects in their lives and experiences impact cervical screening.\u003c/p\u003e \u003cp\u003eIn this study, South Asian identity refers to those that self-identify with a South Asian ancestry (i.e., not necessarily of South Asian birth). South Asian ancestry can include the following countries: Afghanistan, Bangladesh, Bhutan, India, Maldives, Nepal, Pakistan, Sri Lanka. This also includes people who can trace their origins back to South Asian countries, such as Indo-Guyanese people. South Asian refers to ancestry and includes those that have immigrated to Canada and those that were born in Canada.\u003c/p\u003e \u003cp\u003eThis CM study is guided by the research question: how do the lives and experiences of South\u003c/p\u003e \u003cp\u003eAsian women living in Ontario shape their decisions around getting screened for cervical cancer? Additionally, we set out to understand how these experiences cluster into larger themes.\u003c/p\u003e"},{"header":"2. Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003e2.1 Study Design\u003c/h2\u003e \u003cp\u003eThe social-ecological model (SEM) posits that there are multiple levels of influence on health behaviours. Social and physical environments are important contextual factors for people\u0026rsquo;s health behaviours. SEM is useful for conceptualizing multiple levels that determine health behaviours and are therefore necessary for designing comprehensive multilevel interventions. [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e] This is particularly important when understanding uptake of cervical screening amongst South Asian women, as multiple influences at multiple levels of their social and physical environments can encourage or create barriers to cervical screening. As such, the use of SEM is reflected in how we explored the multi-level aspects of the lives and experiences of South Asian women that impact uptake of cervical screening.\u003c/p\u003e \u003cp\u003eFor this study, a Concept mapping (CM) study design was used. CM was developed Trochim and Kane [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e, \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e] to collect ideas from a group of individuals, identify how they organize the interrelationship amongst the ideas, and to represent their group thinking with graphics. The result of this method is a conceptual framework that reflects how a group views a particular topic [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. CM has many participatory aspects. Participants are involved in the generation of ideas, and the organizing and prioritizing of data, labelling of findings and discussion of relevance. They are given an opportunity to challenge results and discuss application of findings. The processes within CM combine qualitative approaches with quantitative analytical tools to create a display of the relationship between ideas [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e]. CM is an appropriate method to use when there is a group whose experiences and needs may not be traditionally represented amongst larger groups or the status quo [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. It provides an opportunity to develop a joint meaning and group consensus [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]. We emphasized the participatory aspects of CM in our study through engaging participants in the four main activities that are described below (section \u003cspan refid=\"Sec11\" class=\"InternalRef\"\u003e2.6\u003c/span\u003e, Fig.\u0026nbsp;1): brainstorming, sorting, rating and map interpretation.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003e \u003cb\u003eFigure 1. Flowchart of concept mapping activities, displaying order each activity was completed in and the number of people that participated in each activity.\u003c/b\u003e \u003c/p\u003e \u003cp\u003eCM is unique and innovative in its qualitative approach. To begin with, CM draws some of its strength from the inclusion of both individual- and group-oriented activities. CM is comprised of activities where participants work independently avoiding group dynamic issues of conformity bias, an individual monopolizing the discussion as well as participants needing to process their perceptions and express their personal experiences in front of people (e.g., researchers, other participants) [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e]. This is particularly useful when studying cervical screening amongst South Asian women, as it can be a very difficult topic for people to discuss.\u003c/p\u003e \u003cp\u003eOne of the major strengths of CM is the inclusion of participants in the interpretation and analyses. Unlike researchers leading coding of interview and focus group data, in CM the researcher is there to manage the process while participants contribute directly to data analysis, discussion and interpretation of the findings [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e]. Additionally, CM moves beyond simply identifying and exploring themes, to also include analysis of how the themes relate one another, and this is a stronger approach to understanding complex issues than interviews and focus groups [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e]. Lastly, the structure of CM allows for a rather complex process of idea exploration to occur during a relatively short time \u0026ndash; an important aspect of community-based research which keeps people engaged and produces timely results.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003e2.2 Sampling Strategy and Recruitment\u003c/h2\u003e \u003cp\u003eWhile initially designed for groups of 40 or fewer in-person participants, online tools make it\u003c/p\u003e \u003cp\u003epossible to have larger and/or geographically dispersed groups [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. For this study, a range of stakeholders were engaged in the CM process to understand how the lives and experiences of South Asian women influence their decisions around cervical screening. The stakeholders included: i) South Asian women living in the Greater Toronto Area (GTA), ii) community champions \u0026ndash; trusted, female members of the South Asian community with pre-existing connections with local community groups and organizations, iii) people who work in organizations that serve South Asian women in the GTA, and iv) healthcare providers serving South Asian patients. Since the goal of CM is to achieve a broad sample of ideas and not a representative sampling of persons, nonrandom sampling was used [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. Purposive sampling for heterogeneity was used to select participants that were most likely to yield appropriate and useful information [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e, \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eEligibility criteria for South Asian women included: self-identify as South Asian, and is or has ever been eligible for cervical screening in Ontario (at least 21 years of age, has been sexually active, has a cervix). All other participants such as healthcare providers and community service providers, had to identify as being in a role that works or serves South Asian women. These participants were also asked to gauge their familiarity with cervical cancer screening amongst South Asian women. All participants had to be at least 18 years of age and speak conversational English.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003e2.3 Recruitment Procedures\u003c/h2\u003e \u003cp\u003eRecruitment primarily occurred through poster distribution at groups and organizations that have a high South Asian client population, and through word-of-mouth. A community champion shared the flyer with more informal groups on social media, WhatsApp, and in her personal circle. Service providers were primarily recruited through email and poster distribution on mailing lists at hospitals, primary care teams and other health and social services.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003e2.4 Demographics\u003c/h2\u003e \u003cp\u003eEach time they participated, participants were asked to select one of the following\u003c/p\u003e \u003cp\u003efive categories: i) I identify as South Asian; ii) I work in a role or an organization that serves South Asian women and I identify as South Asian; iii) I work in a role or an organization that serves South Asian women and I do not identify as South Asian; iv) I work as a primary care provider and I identify as South Asian; or v) I work as a primary care provider and I do not identify as South Asian. The first category is considered \u0026lsquo;service users\u0026rsquo; and the remaining categories are referred to as \u0026lsquo;service providers.\u0026rsquo; Service providers were also asked how long they have been in their area of work, and service users were asked if they had ever had a Pap test. All participants were asked their age and gender identity. In the sorting and map interpretation activities (described below), service providers were additionally asked for the approximate percentage of South Asian people that they serve, and further details about their roles in healthcare and the community.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003e2.5 Concept mapping activities\u003c/h2\u003e \u003cp\u003eTo prepare for CM, the researcher must first determine the focus, which is typically a sentence completion prompt or a directive that asks participants for special statements or expressions of interest about a topic [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e]. There are four data collection activities that follow: brainstorming, sorting, rating and map interpretation. This is summarized in Fig.\u0026nbsp;1.\u003c/p\u003e \u003cp\u003eAll CM activities were completed between September 2022 and August 2023. This paper presents the data from the brainstorming, sorting and map interpretation activities. The brainstorming data show us what experiences in the lives of South Asian women were identified as impacting cervical screening, and the sorting data shows us how these brainstormed ideas cluster into larger themes. Analysis of the rating data has been published elsewhere [\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e, \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e].\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section3\"\u003e \u003ch2\u003e2.5.1 Brainstorming activity\u003c/h2\u003e \u003cp\u003eThe objective of the brainstorming round was to encourage participants to think broadly about factors within the lives and experiences of South Asian women that impact their decision to get screened for cervical cancer. With input from the study team and members of the community, the following prompt was developed, and participants were asked to provide up to 10 responses to the prompt: \u003cem\u003eOne thing about the lives and experiences of South Asian women that influence their decision, in a positive or negative way, to get screened (i.e., a Pap test or HPV test) for cervical cancer is...\u003c/em\u003e The brainstorming activity used an anonymous link so participants could feel more comfortable to express their thoughts and to also make participation low-barrier (e.g. no passwords or usernames). This was particularly important for this activity, as we wanted to include as many people as we could. The demographic questions were set up as the first part of the activity, so people did not accidentally miss the questions. These were submitted and then participants were taken to the brainstorming activity. With this link, participants were able to see what statements had already been collected from other participants and could provide additional statements that they believed were relevant. Participants could also review the existing statements and choose to not add anything additional. Lastly, they could come back to the activity to add in additional statements they thought of later. The initial brainstormed statements were reduced into a shorter manageable number of statements composing the master list that was used in the remaining CM activities\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section3\"\u003e \u003ch2\u003e2.5.2 Sorting activity\u003c/h2\u003e \u003cp\u003e In the sorting activity, participants were asked to provide their perceptions on the similarity\u003c/p\u003e \u003cp\u003ebetween the items in the master list. The purpose of this was to identify how participants view the interrelationship of the ideas [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. Participants were asked to sort the statements from the master list described above into piles that made sense to them. The sorting task was done independently. Most participants completed this activity online with a personalized link where they could save their work and return to it later. Due to the relatively challenging nature of this task, an in-person group was held in a community centre, so people could complete the activity with a member of the team (KD) there to provide real-time instruction. Findings from the application of hierarchical cluster analysis enabled the generation of point cluster maps. These maps show us how participants sorted the statements and thought about them thematically. A group of participants reviewed, revised and confirmed the map in the final CM activity: map interpretation. During this session, participants also discussed and agreed on a label for each grouping (i.e., cluster).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section3\"\u003e \u003ch2\u003e\u003cem\u003e2.5.3 Data collection\u003c/em\u003e\u003c/h2\u003e \u003cp\u003eData collection and analyses were managed through Concept Systems Group Wisdom. The\u003c/p\u003e \u003cp\u003egroup map interpretation session was held over Zoom. Participants were given a letter of information before each activity and provided their implied consent through their participation in the activity. Participants were given an e-gift card upon completion of each activity: \u003cspan\u003e$\u003c/span\u003e30 for brainstorming, \u003cspan\u003e$\u003c/span\u003e40 for sorting and \u003cspan\u003e$\u003c/span\u003e30 for map interpretation. Participants were not required to complete all the CM activities. Some participants who were recruited during the brainstorming activity participated in all activities of the study whereas others participated in 1 to 3 activities.\u003c/p\u003e \u003cp\u003eFigure 1 describes the order of the concept mapping activities.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003e2.6 Data Analysis\u003c/h2\u003e \u003cdiv id=\"Sec12\" class=\"Section3\"\u003e \u003ch2\u003e2.6.1 Creation of master list from brainstormed statements\u003c/h2\u003e \u003cp\u003eThe data from the brainstorming round was cleaned to remove duplicate, incomplete or off-topic responses. The purposes of this are to obtain a list of unique items, where each item represents a single idea that is relevant to the CM focus, and to reduce the number of items to a manageable list for participants to sort and rate [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. Two research team members (KD and AL) reviewed each statement that was removed, for agreement. A meeting with the research team was held to confirm the decisions made during item reduction. The draft master list was then reviewed for clarity by the community champion, a service provider and two members of the research team (AL and PO) to create the final master list to be used in the subsequent CM activities (e.g. sorting). Minor edits were made for clarity, including grammar.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section3\"\u003e \u003ch2\u003e2.6.2 Hierarchical cluster analysis of sorting data\u003c/h2\u003e \u003cp\u003eThe sorting activity is the basis for the point and cluster maps that are created in GroupWisdom. First, a similarity matrix is created that indicates the number of participants that sorted each pair of statements together [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. Then multidimensional scaling (MDS) of the summed up similarity matrix uses the similarity data and represents them as distances in Euclidean space, locating each statement as a separate point on a two-dimensional (X,Y) map [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e]. In MDS the key diagnostic measure is the stress value. This is a metric for indicating the degree to which the MDS fits the original similarity matrix [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. A lower stress value is preferred and suggests a better overall fit [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. Kane and Trochim state that 95% of concept mapping projects are likely to have stress values that range between 0.205 and 0.365 [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. Hierarchical cluster analysis groups individual statements on the point map into clusters of statements that reflect similar concepts [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe location of the statement points on the map and the resulting distance between them, show us how people sorted them and thought about their relatedness. Points that are far apart mean than people did not frequently group these together, and therefore did not see them as related. Points that are closer together were frequently sorted together, indicating that participants often found them related to each other. In this step of the analysis, the researcher is able to see the solutions for different number of groupings and make decisions about which set of groupings best fit the data, that is yields the clusters with the best internal cohesion for the statements, based off where the point representing the statement is located. This shows us how participants think about the ideas thematically.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section3\"\u003e \u003ch2\u003e2.6.3 Bridging and anchoring analysis\u003c/h2\u003e \u003cp\u003eAfter MDS and the hierarchical cluster analysis, a bridging value ranging from 0 to 1 is\u003c/p\u003e \u003cp\u003ecomputed for each statement and then an average for each cluster. This bridging and anchoring analysis describes how each statement and cluster on the map is related to the statements around it [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. \u0026lsquo;Anchors\u0026rsquo; have lower values which indicate the statement was more often sorted by participants with others close to it on the map [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. These reflect greater internal cohesion of a cluster. Higher values known as \u0026lsquo;bridges\u0026rsquo; indicate statements that were less often sorted together\u003c/p\u003e \u003cp\u003eby participants and sorted with statements on the other side of the map [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section3\"\u003e \u003ch2\u003e2.7.4 Map interpretation session\u003c/h2\u003e \u003cp\u003eThe final activity was a session where a group of participants were brought back to see the CM results and have a discussion on its utility [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. This is a form of member checking. During this session, participants were presented with some of the draft cluster maps that were suggested by GroupWisdom, to discuss and choose a version that makes the most sense to them. Once a map was agreed upon, participants came up with labels for each cluster and discussed regions within the map.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"3. Results","content":"\u003cp\u003e\u003cstrong\u003e3.1 Participant sample\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDuring the brainstorming activity, submitting the demographics questions was one step in the\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eprocess of accessing the main activity through the anonymous link. However, for those who came back multiple times to brainstorm additional responses, they would have had to submit the demographic questions again, before accessing the activity. As a result, it is not possible to know exactly how many people participated, as coming back to the activity more than once would count the same participant multiple times in the demographic questions. We know participants came back multiple times as there were more completed demographics questions than people that were invited to participate. \u0026nbsp;Using the completed demographics questions and available time stamps, the number of participants estimated for the brainstorming round is between 44 and 72: 44 sets of demographic questions were completed and an accompanying list of brainstormed statements submitted; \u0026nbsp;an additional 12 sets of demographic questions were completed and at least one statement was added to the existing list but the activity was not submitted; 16 sets of demographic questions were completed but no other action was taken, which may mean the statements were looked at with nothing additional to add. We recruited 22 participants to complete the sorting activity. Half of them were service providers and the other half were service users. The map interpretation session was attended by 9 participants who had completed both brainstorming and sorting activities. Four of them were service users and 5 of them were service providers. All the participants in the sorting and map interpretation round also identified as South Asian, regardless of if they were service users or providers (e.g. healthcare, community).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTable 1 details the demographics we collected in the brainstorming, sorting and map interpretation activities. Almost all the participants identified as South Asian and female, with the majority of them being service users and having had at least one Pap test before. There was a\u0026nbsp;\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" align=\"left\" width=\"1007\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" valign=\"top\" style=\"width: 822px;\"\u003e\n \u003cp\u003eTable 1 a. Participant demographics asked during the brainstorming, sorting and map interpretation activities\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 188px;\"\u003e\n \u003cp\u003eParticipant question\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eOptions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003eBrainstorming \u0026nbsp;(n=72)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003eSorting (n=22)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003eMap Interpretation (n=9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"6\" style=\"width: 188px;\"\u003e\n \u003cp\u003eWhat best describes your role in this study?\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eI identify as South Asian\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e52\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e11\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eI work in a role or an organization that serves South Asian women AND I identify as South Asian\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eI work in a role or an organization that serves South Asian women AND I DO NOT identify as South Asian\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eI work as a primary care provider AND I identify as South Asian\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eI work as a primary care provider AND I DO NOT identify as South Asian\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"5\" style=\"width: 188px;\"\u003e\n \u003cp\u003eIf you work in healthcare or in the community, how long have you been in this area of work?\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003e1 to 5 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003e6 to 10 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003e11 to 15 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003e16 to 20 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003e20+ years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" style=\"width: 188px;\"\u003e\n \u003cp\u003eHave you ever had a Pap test?\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e46\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eUnsure\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"5\" style=\"width: 188px;\"\u003e\n \u003cp\u003eWhat is your age?\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003e21 to 30\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003e31 to 40\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003e41 to 50\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e24\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e11\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003e51 to 60\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003e61 to 70\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" style=\"width: 188px;\"\u003e\n \u003cp\u003eDo you identify as\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e71\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e22\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" valign=\"top\" style=\"width: 822px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eTable 1 b. Additional participant demographics asked during the sorting and map interpretation activities\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 188px;\"\u003e\n \u003cp\u003eParticipant question\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eOptions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003eSorting (n=22)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003eMap Interpretation (n=9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 188px;\"\u003e\n \u003cp\u003eIf you work in healthcare or in the community, what percentage of the population that you serve are South Asian?\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e9% to 85%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e9% to 85%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"10\" style=\"width: 188px;\"\u003e\n \u003cp\u003eIf you work in healthcare or in the community, which of the following describes your role/work?* (check all that apply)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eAllied health professional (e.g. nurse, physiotherapist, dietician)\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eCancer care (screening, diagnosis, treatment)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eCommunity Outreach\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eHealth promoter\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eHealthcare provider working in a hospital (e.g. hospitalist, inpatient nurse, mammography technician)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003ePrimary care provider \u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eProgram coordinator\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eResearcher\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eSettlement services\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 332px;\"\u003e\n \u003cp\u003eVolunteer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;*only options that were chosen, are displayed here.\u003c/p\u003e\n\u003cp\u003ewide range in the years that service providers had been engaged in their work, however the sorting and map interpretation round did not include people with less than 6 years of experience in their area of work. The majority of participants were between the ages of 31 years and 60 years, indicating that age-wise, most participants had not just become eligible, nor were they close to being ineligible, for cervical screening. During the sorting round, service providers indicated that between 9 and 85 per cent of the population they serve, is South Asian. During these activities, we also had representation from many different roles in health care and community services.\u003c/p\u003e\n\u003cp\u003eWe were successful in recruiting many South Asian women from a range of ages. While we had also strived to recruit service providers and were successful in recruiting many who worked in roles and organizations that serve South Asian women, we fell short in recruiting a large number of primary care providers such as family physicians and nurses who primarily do cervical screening in Ontario. Additionally, we only recruited 5 people who had never had a Pap test before.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e3.2 Experiences in the lives of South Asian women that shape their decisions around cervical screening: results from the brainstorming activity\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants brainstormed a total of 210 statements and after idea synthesis, 45 unique and distinct statements were identified, to create the conceptual domain. These statements are listed in table 2 and have been each assigned a number that is referenced throughout the results section and figures.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2: Master list statements from the brainstorming round. Numbers are only to identify the statements throughout the text and figures. Numbers do not indicate rank value or any other value.\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"905\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;Statement ID #\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eStatement\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eThe belief that you should not \u0026quot;touch\u0026quot; things or go under the knife (meaning any medical procedure) because it brings more harm than good\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eCultural expectations or pressures that the idea of \u0026quot;modesty\u0026quot; prevents women in the South Asian community from getting screened for cervical cancer.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eWomen do not go to the doctor unless they are having an issue\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eAppointments are not available at times that are convenient for patients\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eWomen do not feel comfortable with their healthcare provider\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eLack of access to cervical cancer screening information shared by trusted sources\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003ePap test appointments are viewed as time consuming\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eWomen believing that a Pap test can lead to an infection\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eA woman\u0026apos;s lack of understanding and education around cervical cancer\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e10\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eNeeding to communicate with healthcare providers in English is a barrier for South Asian women to be screened for cervical cancer\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e11\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eIf a woman believes that cervical cancer is not a severe condition, this can discourage them from getting screened\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eMen in South Asian households make decisions about females getting screened\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eEducation about cervical cancer is needed for men in South Asian households\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eA woman\u0026apos;s belief that cervical cancer screening is not necessary if you have only had one sexual partner\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eWomen need reminders to know when they are due for cervical cancer screening\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e16\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eNegative cultural beliefs behind gynecologist visits leads to South Asian women feeling shame when booking appointments.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eSouth Asian women are not comfortable to discuss their sexual history\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eNot enough media coverage of cervical cancer screening within the South Asian community\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003ePap tests can feel painful\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e20\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eWomen may view a Pap test as a dirty procedure where you may bleed afterwards\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e21\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003ePreventative care is not well understood by South Asian women\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e22\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003ePrior negative experience with a Pap test discourages South Asian women from getting screened\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e23\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eSouth Asian women may be worried about their family finding out they are sexually active\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e24\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eNot having a healthcare provider of a similar cultural background makes intimate tests such as a Pap test, uncomfortable\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e25\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eSex is a taboo topic amongst South Asians\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e26\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eAny tests related to sex can be considered dirty\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e27\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eWomen believe that if they have an HPV vaccine, they do not need to be screened for cervical cancer\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e28\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eWomen may be shy to have an examination in that area of their body\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e29\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eForeign trained physicians may not encourage their patients to do cancer screening, as preventative care may not have been common in their home countries.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e30\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eSouth Asian women may prioritize looking after their families over their own health\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e31\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eSouth Asian women may be too busy with their jobs or careers to take care of their own health\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e32\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eLack of support from family members to go and get screened\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e33\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eLack of support from friends to go and get screened\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e34\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eWomen are afraid to find out if they have cancer\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e35\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eCervical cancer screening is not openly discussed in the South Asian culture\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e36\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eWomen may be uncomfortable with going to the doctor in general\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e37\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eWomen hear other women share negative experiences about getting a Pap test\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e38\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eThe belief that if a cervical cancer diagnosis is your fate or destiny, there is no reason to get screened\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e39\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eBelief that you only have to worry about cervical cancer if you have a problem with your menstruation\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e40\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eFamily doctor does not encourage cervical cancer screening during appointment\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e41\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eWomen may not know what a Pap test involves\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e42\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eWomen may not know the purpose of a Pap test\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e43\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eWomen do not have a family doctor\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e44\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eSouth Asian women will only get screened when symptoms arise\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 2.87293%;\"\u003e\n \u003cp\u003e45\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 97.1271%;\"\u003e\n \u003cp\u003eSouth Asian women won\u0026apos;t get screened because they think they cannot get cervical cancer.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eStatements about South Asian culture came up often during the brainstorming. Participants\u0026nbsp;\u003c/p\u003e\n\u003cp\u003etalked about how it can lead to discomfort during healthcare visits related to women\u0026rsquo;s health: \u0026lsquo;negative cultural beliefs behind gynecologist visits leads to South Asian women feeling shame when booking appointments\u0026rsquo; (statement #16); and \u0026lsquo;cultural expectations or pressures that the idea of \u0026quot;modesty\u0026quot; prevents women in the South Asian community from getting screened for cervical cancer\u0026rsquo; (#2). Participants also talked about how a lack of openness to discuss cervical screening is an issue (#35). What was particularly common amongst the statements were references to sexual intercourse. Statements such as #25 and #26 show how discomfort around the topic of sexual intercourse can impact how people view and participate in cervical screening, as being sexually active is an eligibility criterion. With discussing sexual intercourse being taboo amongst some South Asians, it also introduces discomfort around discussing sexual history (#17) and even a fear of friends and family finding out a woman is sexually active (#23).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe brainstorming activity also uncovered a range of personal beliefs that women may have.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFatalistic attitudes (#38) show that some women may not get screened because they think if it is\u0026nbsp;\u003c/p\u003e\n\u003cp\u003etheir destiny to get cancer, screening or any other preventive measure is pointless. Statements also reflected how fear and uncertainty can stand as a barrier to screening (#1 and #34). Additionally, some misconceptions that may convince South Asian women that they do not need cervical screening came up (#14, #27, and #45). Additionally, statement #11 demonstrates how some women may not feel the need to get screened, if they do not view cervical cancer as particularly threatening to their well-being.\u003c/p\u003e\n\u003cp\u003eStatements about the Pap test itself, were largely present in the brainstormed list. A lack of\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eunderstanding around Pap tests is highlighted in statements such as #41 and #42. The statements also demonstrated that the Pap test itself can be a barrier to continued participation in cervical screening as it can be viewed as painful (#19), possibly leading to an infection (#8), and time consuming (#7). Having or hearing about prior negative experiences with Pap tests can also impact future screening participation as shown in the statements #22, #28 and #37.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e3.3 Sorting and creation of cluster map to understand how participants thought experiences relate to each other and cluster into larger themes\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe statements in the master list were then sorted by participants and this sorting data was used to populate a map based on how often the statements were sorted together and create the basis for the conceptual framework. Of the 22 participants that completed sorting, data from 18 were included in the analysis. Four participants\u0026rsquo; sorting data was not used because of errors in their sorting (e.g. too few statements were sorted, statements were sorted multiple times).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFigure 2 presents the cluster map with the location of each statement, represented as a numbered\u0026nbsp;\u003c/p\u003e\n\u003cp\u003epoint that corresponds Table 2. The stress value is 0.2780 after 16 iterations, suggesting a good overall fit between the sorted data and the produced map.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eDuring the map interpretation session, participants agreed on the 6-cluster solution for the map as they agreed with the ways in which statements were grouped together and the distinctions that were made by these grouping. There was some discussion about moving individual statements from one cluster to another, but overall there was no complete agreement amongst the participants for moving any individual statement from one cluster to another. As a result, no statements were moved.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe final cluster labels determined during the map interpretation session were: 1) Personal beliefs and misconceptions around cervical cancer; 2) Education and knowledge issues around cervical cancer; 3) Cultural beliefs and influences specific to sexual health; 4) Barriers to prioritizing uptake of cervical screening; 5) System/ infrastructure gaps or inadequacies; and 6) Lack of comfort and supportive relationships in healthcare. During the session, two distinct map regions were also identified. Cluster 1 and 2 in the bottom right corner of the map, were labelled as a part of the map that is mainly representative of \u0026lsquo;individual-level factors.\u0026rsquo; Clusters 3, 4, and 6 were seen as the area of the map that represented \u0026lsquo;social factors.\u0026rsquo; Cluster 5 was believed to be distinct from the two regions as it was specific to healthcare spaces and delivery. This showed us, thematically, what about the lives and experiences of South Asian women impact their decisions to get screened for cervical cancer.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e3.3.1 Cluster 1: Personal beliefs and misconceptions around cervical screening\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis cluster of statements represented fatalistic attitudes (#38,#1) and misconceptions that convince people they do not need to get screened (#14), including the belief that if they only ever had one sexual partner they do not need to be screened, or simply that they cannot get cervical cancer (#45).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e3.3.2 Cluster 2: Education and knowledge issues around cervical cancer\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn this cluster, broad topics such as understanding preventative care, as well as more specific topics such as details about a Pap test, were covered. Overall, education around cervical cancer and related screening largely made up this cluster. There were some topics that seem closely related to Cluster 1 \u0026ndash; a matter that was also brought up by two participants during map interpretation \u0026ndash; and those were the statements that reflect misconceptions (#27 and \u0026nbsp;#39). While these statements were not located close enough to be placed in Cluster 1 by GroupWisdom, it is important to note that Cluster 1 and Cluster 2 are located close to each other in the map, further supporting a demarcation of the \u0026lsquo;individual-level factors\u0026rsquo; region in the bottom right corner of the map.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e3.3.3 Cluster 3: Cultural beliefs and influences specific to sexual health\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn this cluster, the statements reflect the impact of South Asian culture on sexual health. Statements such as #25 and #17 demonstrate some of the social barriers that exist for women to openly discuss their sexual health. The statements in this cluster also show how these cultural beliefs can then impact perceptions of Pap tests.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e3.3.4 Cluster 4: Barriers to prioritizing uptake of cervical screening\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis is the largest cluster on the map. Here, statements around aspects of people lives and experiences that impact how and if they prioritize screening, were largely represented. \u0026nbsp;Statements #30 and #31 demonstrate how aspects of people\u0026rsquo;s day-to-day lives can impact health actions such as cervical screening. Overall approaches to health and healthcare such #3 and #44 demonstrate how cervical screening may go unprioritized because people are asymptomatic, as well as experiences with the Pap test itself. seemed to be a driver for people to avoid cervical screening\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e3.3.5 Cluster 5: System/infrastructure gaps or inadequacies\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCluster 5 was seen as distinct from the other clusters and regions by participants in the map\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;interpretation session. This cluster contains statements related to patient-provider interaction\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e(#29, #40), provider characteristics (#24), language needs (#10), availability of providers (#4) and overall access to healthcare (#43).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e3.3.6 Cluster 6: Lack of comfort and supportive relationships in healthcare\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe final contains statements around the impact of family and friends as sources of support to get\u0026nbsp;\u003c/p\u003e\n\u003cp\u003escreened (#32 and #33). Other statements in this cluster showed the role of discomfort with healthcare providers (#5 and #36)\u0026ndash; and having an intimate examination (#28). These statements suggest that support from friends and family, as well as comfort in the screening procedure, impact screening.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eta\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e3.4 Bridging values\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eTable 3 presents the average bridging value for each cluster. Cluster 2 (education and knowledge\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eissues around cervical cancer) has an average bridging value close to 0, indicating that this cluster is conceptually clear from the rest of the map, and that the statements in this cluster were very often sorted together by participants. The low bridging values indicate that this is a distinct area of the map with little to no relationships with other areas of the map. This supports the decision to not combine Clusters 1 and 2 together \u0026ndash; as proposed in the 5 cluster solution - and to keep them distinct. This tells us that education and knowledge around cervical cancer are viewed as distinct factors, that play a role in cervical cancer screening.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTable 3: Bridging values for each cluster. Cluster ID numbers are only to identify the clusters throughout the text and figures. Cluster ID numbers do not indicate rank value or any other value.\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"673\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 13.5215%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCluster ID #\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 70.7281%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCluster Name\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 15.7504%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eBridging\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 13.5215%;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 70.7281%;\"\u003e\n \u003cp\u003ePersonal beliefs and misconceptions around cervical screening\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 15.7504%;\"\u003e\n \u003cp\u003eAvg 0.27\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 13.5215%;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 70.7281%;\"\u003e\n \u003cp\u003eEducation and knowledge issues around cervical cancer\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 15.7504%;\"\u003e\n \u003cp\u003eAvg 0.08\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 13.5215%;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 70.7281%;\"\u003e\n \u003cp\u003eCultural beliefs and influences specific to sexual health\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 15.7504%;\"\u003e\n \u003cp\u003eAvg 0.28\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 13.5215%;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 70.7281%;\"\u003e\n \u003cp\u003eBarriers to prioritizing uptake of cervical screening\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 15.7504%;\"\u003e\n \u003cp\u003eAvg 0.61\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 13.5215%;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 70.7281%;\"\u003e\n \u003cp\u003eSystem/infrastructure gaps or inadequacies\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 15.7504%;\"\u003e\n \u003cp\u003eAvg 0.27\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 13.5215%;\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 70.7281%;\"\u003e\n \u003cp\u003eLack of comfort and supportive relationships in healthcare\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 15.7504%;\"\u003e\n \u003cp\u003eAvg 0.48\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;Clusters 1 and 3 also have relatively low average bridging values, further indicating this area of the map is conceptually clear (i.e. participants did not vary in how they viewed them as related to other statements in this area of the map) with statements in this area often being sorted with adjacent statements and less likely with those across the map. This is also true for Cluster 5 which is located on the other side of the map and has an average bridging value of 0.27. This further supports the participants in the map interpretation session who thought Cluster 5 was distinct from the rest of the clusters and regions and was therefore a region of its own. Overall, these values also tell us that there is greater cohesion amongst the statements within the three clusters, and low variability amongst participants\u0026rsquo; sorting. These statements are closely related to each other, compared to areas of the map with higher values, meaning that the ideas in these clusters are not related closely to other areas of the map.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eParts of the map with higher bridging values indicate statements that are \u0026lsquo;bridges\u0026rsquo; between areas of the map. Cluster 4 has a relatively higher average bridging value of 0.61indicating a higher variability in how participants interpreted and sorted the statements within the cluster. This does not mean that these statements were not as conceptually clear, but rather that participants varied in how they saw them as related to other statements on the map.\u003c/p\u003e\n\u003cp\u003eExamining areas of the map with many anchored statement areas where participants were consistently grouping items together, we can see that statements in the bottom right corner of the map (Figure 2) have very low bridging values. Statements #8, #11 and #27 have very low bridging values. This indicates that participants consistently sorted these statements together, and this area of the map is conceptually clear and distinct from other ideas throughout the map. These statements are anchors. This supports the decision to not move these individual statements out of cluster 2, as mentioned earlier.\u003c/p\u003e\n"},{"header":"4. Discussion","content":"\u003cp\u003eThis concept mapping analysis identified how individual-level factors around personal beliefs and misconceptions, as well as education and knowledge issues around cervical cancer, impact screening amongst South Asian women. We found that larger, social impacts around themes of cultural beliefs and influences specific to sexual health, barriers to prioritizing uptake of cervical screening, as well as lack of comfort and supportive relationships in healthcare, can also play a role. Lastly, we found that despite these social and individual-level factors, issues within the healthcare system can be a determinant around access to screening.\u003c/p\u003e \u003cdiv id=\"Sec26\" class=\"Section2\"\u003e \u003ch2\u003e4.1 Implications for policy and health intervention\u003c/h2\u003e \u003cp\u003eCurrently the province of Ontario is still working to recover from screening shutdowns and\u003c/p\u003e \u003cp\u003ewidening of screening gaps during the COVID-19 pandemic. The backlog of cancer screening and services in the province is around 1.1\u0026nbsp;million from the first year of the COVID-19 pandemic alone [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e]. Furthermore, with increasing evidence around the efficacy of HPV screening, Ontario will be moving towards HPV testing in the coming years [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e] with some parts of Canada already making the switch [\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e, \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e], The World Health Organization has set out with the goal of eliminating cervical cancer by 2040 through screening with a high performance test equal to, or better than, an HPV test [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e].HPV testing is critical to cervical cancer prevention, and implementing routine HPV testing can put all countries on the path to eliminating cervical cancer [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e].In line with the WHO goals, the Canadian Partnership Against Cancer (CPAC) currently has a goal of elimination of cervical cancer in Canada by 2040 through HPV immunization and screening [\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e]. The findings from this concept mapping analysis highlight critical points of intervention where current rates of underscreening can be addressed, while also identifying important considerations for implementing HPV screening. For example, discomfort with the Pap test \u0026ndash; physical pain, shyness, concerns around bleeding and infections \u0026ndash; was highlighted by many statements from the brainstorming round. Studies have shown the acceptability of HPV self-sampling [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e] \u0026ndash; a test that is less physically invasive and can be self-administered when and wherever someone chooses \u0026ndash; for cervical screening amongst under or never screened (UNS) people. This CM analysis further underscores how promising HPV self-sampling can be for groups of people that are largely under screened.\u003c/p\u003e \u003cp\u003eThe role of culture was present in many ways, including how and if sex is openly discussed, as well as gender roles and decision-making within South Asian households. While challenging, addressing sex being a taboo topic, and educating male partners and other household members about cervical cancer, will be an important area to address in the coming years. Additionally, the role of comfort and supportive relationships could see the increased implementation of peer support programs [\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e] that has already been shown as promising in cervical screening. This can also address the many statements around education and knowledge issues, as well as misconceptions that exist within the South Asian and other under screened communities.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec27\" class=\"Section2\"\u003e \u003ch2\u003e4.2 Comparison with other studies\u003c/h2\u003e \u003cp\u003eOther studies done in this area, similarly identified the role of fatalistic attitudes in cervical screening. Literature has shown that some South Asian women have personal convictions that getting cancer is predestined or karma for past actions, so there is little belief that screening can make a difference [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e, \u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e]. Misconceptions such as the purpose of Pap tests being for sexually transmitted infections [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e] or that healthy lifestyles prevent cancer [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e] can also cause women to choose not to be screened.\u003c/p\u003e \u003cp\u003eLiterature shows that physicians can be seen as authoritative and trustworthy, and if they do not recommend screening, women may not think it is important [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e], and this was similarly seen in the concept map where patient-provider interactions was found to be a distinct area. Past experiences, including feeling rushed and unheard and painful examinations can discourage screening [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e], which can further explain the statement around how some women may generally be uncomfortable going to the doctor. We also found that the social identity of healthcare providers matter. Other studies show that the gender of health care providers, can play a role, as many South Asian women have shown a preference for a female provider to perform examinations and Pap tests, and asking for a referral to a female provider from a male provider is not always successful [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e]. Lastly, literature further elaborates around the stigma within certain South Asian communities around sexual activity, as a woman getting screened would imply certain details about their sexual activity including the virginity of unmarried women [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eWhile literature shows that family and friends can influence the uptake of screening by validating concerns, sharing experiences and providing advice, they can, in some cases also be discouraging or forbid screening [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e]. Our analysis further elaborated on this by uncovering the role of men and other household members in the decision to get screened, and how education around cervical screening is also needed for them.\u003c/p\u003e \u003cp\u003eNext steps for this study would be to look at the rating data to understand the nuanced differences between sub-groups in concept mapping (e.g. service users and service providers) to better understand the different valuing of the concept mapping themes. Additionally, further\u003c/p\u003e \u003cp\u003eanalysis of the CM data will highlight areas of impactful action.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec28\" class=\"Section2\"\u003e \u003ch2\u003e4.3 Limitations\u003c/h2\u003e \u003cp\u003e The main limitation of our study is that conversational English was required of participants. Since concept mapping largely involves participants brainstorming and then interpreting statements, it would be challenging to accommodate multiple languages, even with the assistance of interpreters and translation, as the meanings of individual statements may be lost in between translations. Language poses a barrier for some South Asian women to receive healthcare, and therefore this study may exclude a subset of women who are UNS for cervical cancer.\u003c/p\u003e \u003cp\u003eAdditionally, while this study rationale assumes there are experiences and realities of South\u003c/p\u003e \u003cp\u003eAsian women that are different from the larger population and therefore should be studied to understand underscreening in the South Asian community, it is also critical to understand the diversity amongst women who identify as South Asian. Amongst South Asian women, there is much diversity along such lines as ethnicity, religion, age, social class, sexual orientation, education and marital status.\u003c/p\u003e \u003c/div\u003e"},{"header":"5. Conclusions","content":"\u003cp\u003eWith the participant-driven method of concept mapping, we were able to uncover a range of\u003c/p\u003e \u003cp\u003efactors in the lives and experiences of South Asian women that impact decisions around cervical screening, and the interrelationships amongst these factors. From this we were able to develop a conceptual framework to understand how the lives and experiences of South Asian women shape their decisions around getting screened for cervical cancer. While previous studies may have uncovered ideas similar to the 45 statements, this work goes a step further to show how people relate these individual ideas to each other and to the larger themes, within and outside healthcare. We uncovered particular issues with Pap tests, relationships impacting healthcare (providers, friends and family), personal beliefs, as well as knowledge issues around cervical cancer and preventative care. We identified specific cultural and social factors amongst South Asian communities that impact cervical screening, including sex being a taboo topic and gender roles that impact prioritization and decision-making. We also uncovered the larger interrelationships between statements considered to be barriers to prioritizing screening and other ideas throughout the map. The participants thematically organized the ideas into 6 different clusters, but overall saw delineation along the lines of individual, social and healthcare system level factors that impact cervical screening participation. The findings demonstrate that multiple interventions that cross-cut multiple levels are needed, as culture, society, healthcare, and other larger structures influence individual actions. Next steps in this work are to further analyse the data to understand priorities for action.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics Approval and Consent to Participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study received Research Ethics Board approval (REB# 43281) from the University of Toronto. All participants provided their consent, prior to participating in the study. This study was conducted in accordance with the Declaration of Helsinki.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for Publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of Data and Materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets generated and/or analyzed during the current study are not publicly available due to\u0026nbsp;\u003c/p\u003e\n\u003cp\u003emaintaining the privacy and confidentiality of participants, but are available from the\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ecorresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting Interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis work did not receive any direct funding.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor’s contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eKD led the conceptualization of the study, formal analysis and writing. KD, AL, JB, and PO developed the methodology; AL, JB, and PO supervised the study and also reviewed and edited the manuscript. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors would like to thank Vijayshree Prakash for all her assistance with recruitment and community engagement. They would also like to thank all the participants that participated in this study.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eCervical cancer testing and prevention. https://www.ontario.ca/page/cervicalcancer-testing-and-prevention?gad_source =1\u0026amp;gclid=Cj0KCQjwh7K1BhCZARIsAKOrVqEzANAnOb4qPwGZMK2kf1zuE56tp5lZjWjUDLFerKMouqepUjtXTRsaAqkLEALw_wcB\u0026amp;gclsrc=aw.ds. 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The potential benefits of \u0026ldquo;community champions\u0026rdquo; in the healthcare system. Healthcare Management Forum 36(2023)\u003cu\u003edoi:\u003c/u\u003e10.1177/08404704231179911\u003c/li\u003e\n \u003cli\u003eCullerton K, Gallegos D, Ashley E, Do H, Voloschenko A, Fleming M, et al. Cancer screening education: can it change knowledge and attitudes among culturally and linguistically diverse communities in Queensland, Australia? Health Promot J Austr. 2016; 27:140-147.\u003c/li\u003e\n \u003cli\u003eSalman KF. Health beliefs and practices related to cancer screening among Arab Muslim women in an urban community. Health Care Women Int. 2012; 33: 45-74.\u003c/li\u003e\n \u003cli\u003eHulme J, Moravac C, Ahmad F, Cleverly S, Lofters A, Ginsburg O, et al. \u0026quot;I want to save my life\u0026quot;: Conceptions of cervical and breast cancer screening among urban immigrant women of South Asian and Chinese origin. BMC Public Health 2016;16:1077.\u003c/li\u003e\n \u003cli\u003eGupta A, Kumar A, Stewart DE. Cervical cancer screening among South Asian women in Canada: the role of education and acculturation. Health Care Women Int. 2002; 23: 123-34.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-public-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pubh","sideBox":"Learn more about [BMC Public Health](http://bmcpublichealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pubh/default.aspx","title":"BMC Public Health","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"concept mapping, cervical screening, health equity, women’s health, community engagement, South Asian women, participant-driven","lastPublishedDoi":"10.21203/rs.3.rs-5405035/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5405035/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e: Regular cervical screening can significantly reduce the onset and prevalence of cervical cancer. In Ontario, Canada, South Asian women have the lowest rates of cervical cancer screening among major ethnic groups in the province.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e: Using an innovative and participant-driven method called Concept Mapping (CM), we set out to understand how the lives and experiences of South Asian women living in Ontario shape their decisions around getting screened for cervical cancer. We engaged over 70 South Asian women and people who serve them in healthcare and community, to drive the CM process.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e: Participants brainstormed 45 unique and distinct statements. Through sorting and map interpretation, participants identified and interpreted 6 clusters amongst the statements: 1) Personal beliefs and misconceptions around cervical cancer; 2) Education and knowledge issues around cervical cancer; 3) Cultural beliefs and influences specific to sexual health; 4) Barriers to prioritizing uptake of cervical screening; 5) System/ infrastructure gaps or inadequacies; and 6) Lack of comfort and supportive relationships in healthcare. Additional analysis shows us the interrelationships between the ideas. Statements within the clusters about education and knowledge issues around cervical cancer, personal beliefs and misconceptions, as well as cultural beliefs and influences specific to sexual health are viewed as distinct beliefs with clear effects on the uptake of cervical screening. More complex interrelationships are seen with the cluster of statements about barriers to prioritizing uptake of cervical screening.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions\u003c/strong\u003e: As Ontario and many other jurisdictions around the world seek to strengthen cervical screening efforts in line with national and international goals to eliminate cervical cancer by 2040, it is critical to address underscreening. This CM study recognizes the value of engaging those most impacted by an issue, to identify and prioritize how and where to intervene to address low rates of cervical screening. To address underscreening we need to design multi-level interventions that address the identified ideas and the interrelationships among them.\u003c/p\u003e","manuscriptTitle":"Perceptions of cervical screening uptake amongst South Asian women: A concept mapping study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-12-16 17:13:01","doi":"10.21203/rs.3.rs-5405035/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-11-13T09:17:58+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-11-13T09:02:42+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-11-12T02:20:39+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Public Health","date":"2024-11-06T19:06:00+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-public-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pubh","sideBox":"Learn more about [BMC Public Health](http://bmcpublichealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pubh/default.aspx","title":"BMC Public Health","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"826742ef-6cee-4a1e-adc3-464f320ceb25","owner":[],"postedDate":"December 16th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-01-27T16:05:56+00:00","versionOfRecord":{"articleIdentity":"rs-5405035","link":"https://doi.org/10.1186/s12889-025-21448-6","journal":{"identity":"bmc-public-health","isVorOnly":false,"title":"BMC Public Health"},"publishedOn":"2025-01-22 15:57:30","publishedOnDateReadable":"January 22nd, 2025"},"versionCreatedAt":"2024-12-16 17:13:01","video":"","vorDoi":"10.1186/s12889-025-21448-6","vorDoiUrl":"https://doi.org/10.1186/s12889-025-21448-6","workflowStages":[]},"version":"v1","identity":"rs-5405035","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5405035","identity":"rs-5405035","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}