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Chao YS, Clark M, Carson E, et al. HPV Testing for Primary Cervical Cancer Screening: A Health Technology Assessment [Internet]. Ottawa (ON): Canadian Agency for Drugs and Technologies in Health; 2019 Mar. (CADTH Optimal Use Report, No. 7.1b.)

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Patients Preferences, Perspectives, and Experiences: A Qualitative Evidence Synthesis

This review addressed research question 4: What barriers, facilitators, and preferences about cervical cancer screening are reported by women living in Canada and countries with comparable health care contexts? How do these differ across social identity groups?

This question was refined after the initial literature search, with the input of the other HTA authors and clinical experts. A summary of revisions to the a priori protocol are outlined in the Protocol Amendments table.

Methods

An SR and qualitative meta-synthesis of the empirical qualitative literature relevant to the research question on patients’ experiences and perspectives was conducted. The protocol was written a priori and followed throughout the research process, with iterative adjustments to the research question and search strategies detailed below. This iteration was prescribed by the a priori protocol in order to accommodate findings about the availability and usefulness of qualitative research evidence. The methods reflect the intention to synthesize results of published studies to address the research and policy questions in a way that yields results useful to decision-makers.

Literature Search Methods

The literature search was performed by an information specialist, using a search strategy peer-reviewed according to the PRESS checklist.32

Information related to patients’ experiences was identified by searching the following databases: MEDLINE (1946–) via Ovid; Embase (1974–) via Ovid; PsycINFO (1967–) via Ovid; CINAHL (1981–) via EBSCO; PubMed; and the Social Sciences and Humanities segments in Scopus.

A hybrid qualitative filter was applied to limit retrieval to qualitative studies. The validation of this filter has been published.148 The search strategy was comprised of both controlled vocabulary, such as the National Library of Medicine’s MeSH, and keywords.

Two searches were conducted: 1) an initial search for qualitative research related to HPV testing or screening, completed January 20, 2017; and 2) a broader search for qualitative research related to any form of cervical cancer screening, completed February 6, 2017. The search was broadened because the initial search retrieved only 12 eligible papers. For the initial search on HPV testing, the search was not limited by date. Retrieval for the broader search on related forms of cancer screening was limited to documents published since January 1, 2002, to align with the other sections of this HTA. For both searches, conference abstracts were excluded results and results were limited to English- and French-language publications. The complete search strategy is presented in Appendix 1. For the second search, eligibility criteria were tightened to include papers that focused on cervical cancer screening and exclude those which discussed the topic in a minor way, for example, alongside other types of cancer screening, or in a discussion of general health system engagement. Only studies conducted in Canada and countries that have comparable health care systems were included (i.e., the US, Australia, New Zealand, and European Economic Area).

Regular alerts were established to update the searches until the completion of the stakeholder feedback period of the final report.

Grey literature (literature that is not commercially published) was identified by searching sources identified in the Grey Matters checklist, which includes the websites of health technology assessment agencies, Internet search engines, and professional associations.

Selection Criteria

Eligible reports were those published in English or French of any qualitative design that explored perspectives of women eligible for cervical cancer screening. Perspectives of women’s partners, family members, and clinicians were also included if they co-occurred with women’s perspectives. We did not include studies on family member or clinician perspectives alone. The following types of publications were excluded: theses and dissertations, data presented in abstract form only, book chapters, editorials, and letters to the editors. Selection criteria are as follows:

Inclusion Criteria

  • English- and French-language full-text publications
  • Studies published after January 1, 2002
  • Primary qualitative empirical research (using any descriptive or interpretive qualitative methodology, including the qualitative component of mixed-methods studies)
  • Studies involving adult women (21 to 70 years of age) and studies involving women outside of this age group who are eligible for cervical cancer screening in the jurisdiction in which the study was conducted
  • Peer-reviewed, published research work
  • Studies conducted in a comparative health care context (i.e., Canada, the US, Australia, New Zealand, the UK, European Economic Area)
  • Studies addressing any aspect of women’s perspectives on cervical cancer screening, regardless of the particular screening intervention or program, or the process of screening
  • Studies that are explicitly relevant to women’s experiences with cervical cancer screening, as indicated by a title that includes a concept related to cervical cancer screening or testing

Exclusion Criteria

  • Animal and in vitro studies
  • Editorials, case reports, or commentaries
  • Studies addressing topics other than cervical cancer screening
  • Work that has not been peer-reviewed, or is not published (e.g., theses, editorials, letters to the editor)
  • Work that is available in abstract form only
  • Work that is available only as a book chapter
  • Studies that did not include the perspectives of women eligible for cervical cancer screening
  • Studies labelled “qualitative” but that did not use a qualitative descriptive or interpretive methodology (e.g., case studies, experiments, surveys, or observational analyses using qualitative categorical variables)
  • Studies involving the perspectives of elderly (aged 71 years and older), adolescent, or pediatric populations
  • Quantitative components of mixed-methods studies were excluded

Screening and Selecting Studies for Inclusion

At least two reviewers independently screened the titles and abstracts of all citations retrieved from the literature search and excluded reports that clearly do not meet the eligibility criteria. The full texts of all potentially relevant reports were retrieved for review. Two reviewers independently reviewed the full-text articles based on the detailed eligibility criteria. Any disagreements among reviewers were resolved through discussion. All eligible articles were included in the analysis.

Data Collection and Extraction

Researchers extracted two types of data from each primary report: study characteristics and study results relevant to the research question.149 One reviewer extracted descriptive data about features of the study using a standardized form. The second type of data relevant to this study is the qualitative results of each included study. Relevant results were extracted into the qualitative data management software N-Vivo 11 (QSR International Pty Ltd. Version 11, 2015). Extraction of both types of data was subsequently verified by a second reviewer.

Descriptive data included items such as first author, article title, study objectives, participant characteristics, characteristics of study design and methodology, date of publication, and nation in which the study was conducted. Specific information about participant characteristics collected include age range, sex or gender, and participant profiles when identified as sampling criteria in the study (e.g., low-income Appalachian women). Appendix 13 provides information about each included article.

The data extracted into N-Vivo was the main source of information for our analysis. Reviewers extracted findings from each study that are relevant to the research topic for further analysis. Qualitative findings are “data-driven and integrated discoveries, judgments, and/or pronouncements researchers offer about the phenomena, events, or cases under investigation.”150 In addition to the researchers’ findings, reviewers also extracted original data excerpts (participant quotes, stories, or incidents) to illustrate or communicate specific findings. Given that discrepancies have been noted between results presented within abstracts and main reports,151 only results presented within the main report were extracted. N-Vivo 11 (QSR International Pty Ltd. Version 11, 2015) was used to extract and manage this data.

Methodological Assessment

Qualitative meta-synthesis researchers typically do not exclude qualitative research on the basis of independently appraised “quality,” an approach that is common to multiple types of interpretive qualitative synthesis.150,152158 However, in order to assist readers in assessing the trustworthiness of our conclusions, we conducted an appraisal of quality for each study. For this purpose, we used the Critical Appraisals Skills Programme (CASP) Qualitative Checklist.159 Each study was assessed by two reviewers. Results of this assessment are included in Appendix 13, which reports the agreement or disagreement of the reviewers on each component of the checklist.

Given the lack of consensus in the field of qualitative research as to methods and standards for critical appraisal of research quality,152 we did not use the CASP tool to exclude studies from consideration. Instead, we included all topically relevant, accessible, and published research using any qualitative interpretive or descriptive methodology. By nature of qualitative data analysis, information-rich and higher-quality studies tend to receive more attention in the analysis because they provide more information relevant to the research and policy questions.

Data Analysis

Descriptive Analysis

A descriptive analysis of study and patient characteristics was conducted, with the goal of characterizing the set of included studies in terms of important study and patient characteristics (e.g., sample size, sample type, national context, year of publication).

Concerning study design, there is significant heterogeneity in the reporting of qualitative research methods, and some authors may report a design, while others name only an analytic approach. Reviewers extracted and described whatever information about study design was made available by the authors, focusing on design where one is provided and describing analytic approach if that was the only information available. Reviewers did not impute information about study design and methodology, but relied on the information the authors provided through explicit statements about study methods. As a result of the variable approaches to reporting qualitative methods, our summary of this information (Appendix 13) includes both study designs and analytic approaches.

Tables summarizing study characteristics are available in Appendix 13 through Appendix 16. A table that describes the features of each individual study is available in Appendix 13.

Thematic Analysis

Published qualitative research was analyzed using techniques of integrative qualitative meta-synthesis,150,154,160 also known as qualitative research integration. Qualitative meta-synthesis summarizes research over a number of qualitative studies with the intent of combining findings from multiple articles. The objective of qualitative meta-synthesis is twofold: first, the aggregate of a result reflects the range of findings across studies while retaining the original meaning; second, by comparing and contrasting findings across studies, a new integrative interpretation is produced.

Analysts used a staged coding strategy adapted from grounded theory.161 This approach involves the comparison of research findings across primary included studies, categories, and co-investigators’ interpretations of the studies. All analytic interpretations are negotiated during regular meetings with the whole research team. The analytic team consisted of four members who each have MSc or PhD qualifications, as well as expertise in qualitative research, particularly in the techniques of grounded theory and qualitative meta-synthesis.

The goal of qualitative meta-synthesis is to produce a report that produces succinct findings that accurately reflect both the aggregated results and the interpretive depth of the component studies, providing the reader a sense of the complexity and richness of the original work.162 At the same time, mindful of the context of HTA, analysts strive to keep the work relevant to the policy concern, offering descriptive and interpretive findings that are useful in the context of HTA. Reported findings include both themes and contrasting perspectives. The results outline findings that are significant for reasons of prominence as well as those that may be less prevalent but are still insightful or relevant to the policy question. We have included findings related to all stages of the life cycle of a technology, including women’s preferences related to implementation.

A note on the terminology of coding for qualitative meta-synthesis: we consider the codes, themes, and categories offered by the author of each study as well as developed our own codes, themes, and categories to synthesize the information across studies.163 We consider a “code” to be the initial unit of qualitative analysis. A code can capture any type of level of idea. It is a label that allows us to apply both descriptive and interpretive level summaries to a piece of data. Codes can be grouped and regrouped to form categories. Themes are the most abstract level of analysis, and are identified in the data by looking across both categories and codes.161,163 Sometimes we move in a linear fashion from code to category to theme, but sometimes the process of identifying categories and themes happens simultaneously, especially in the middle and later stages of coding. Sometimes analysis requires de-construction and re-constitution, for instance, when thinking about a theme catalyzes the de-construction of a category, and re-coding to identify or organize the data in a different way. This is all part of the iterative nature of analysis.161

Initial Coding

Using a staged coding process similar to that of grounded theory,161,164,165 findings of individual studies were broken into their component parts (the author’s key themes, categories, and concepts) and then regrouped across studies according to themes and categories inductively developed by our research team. This was done through a staged process beginning with line-by-line open coding to identify meaning and content. The process of initial coding was completed by multiple coders working separately on the same body of data (approximately five studies to start), and then meeting to discuss their emerging insights. At this stage, we are mainly conducting descriptive coding, although we started to see some “focused coding” work accomplished as the initial codes were condensed and grouped into categories through discussion with all coders. The same group of coders individually coded five more papers, and met to discuss the list of categories and potentially identify initial themes, suggesting a direction for refinement and evolution. At this point, we were confident that the coding of individual analysts was sufficiently aligned, so coding for the rest of the data set proceeded with one researcher acting as the primary coder and another verifying the coding.

Focused and Theoretical Coding

Focused and theoretical coding are second-cycle stages of coding, and occurred both together or separately.161 The objective of focused coding is to group the initial codes into salient categories. The objective of theoretical coding is to account for the relationships between other codes or categories in order to provide a uniting primary theme (maybe called a core or central category) that helps to order, understand, and explain the relationships between other categories.161,163

While many methodological texts explain these as separate processes, in practice they often develop simultaneously, either in tandem or alternating sequence. As the analyst develops familiarity with the data through immersion in analysis, they typically begin to crystallize ideas about different concepts, sometimes pushing one idea quite far theoretically while others remain at an initial coding stage. It is artificial to expect coding and analytic thinking to proceed in a linear fashion, although it is easier to describe it this way in a Methods section. The data set for this study was very large, so we iterated between the initial, focused, and theoretical coding stages. We completed initial coding on a subset of approximately 50 papers, and then developed a focused coding schema. We then went back to apply that focused coding schema to the rest of the data set, refining and adapting the schema as needed and then re-coding the original papers.

Focused or theoretical coding began with a research team meeting to review the initial coding and discuss potential directions for further analysis. At this point, the research team reviewed the initial codes and memos that each analyst had written describing ideas for preliminary categories or themes. The team discussed the relationship between these items and decided on a theoretically relevant direction to proceed. By “theoretically relevant” we mean a direction that is supported by the initial analysis, judged likely to be rich for further inquiry, and relevant to the research question and policy concern facing decision-makers. These categories form the foundation of the interpretive analysis, allowing us to organize and reflect on the full range of insights across the body of literature.150,155

We worked as a team on this large data set by working independently and meeting regularly to discuss: 1) whether the developed list of categories was sufficiently abstract to include all of the initial descriptive themes and to answer the policy question, and 2) whether theoretical coding aligns between analysts. At times where we did not agree on both points, we refined the list of categories, themes, and their relationships and then re-applied the schema to the data independently before meeting to reassess sufficiency and alignment. Once we were confident with our analytic scheme, we were able to work more independently, coding larger sets of data before meeting to discuss.

Throughout all stages of analysis, we met regularly to discuss emerging results and preliminary analytic ideas. To facilitate these discussions, we kept explicit notes using the memo and annotation features in N-Vivo to record decisions made regarding coding and theme development, as a means to help ensure rigour in the analysis. In all stages of coding, analysts paid attention to the transferability of results across different contexts as a way to determine whether some results might only apply to certain subgroups.

Results

A total of 4,937 results were returned from the electronic database searches, alerts, and search updates. Of these, 117 studies were determined to be eligible after full-text screening, and all were included in the analysis. The study selection processes are presented in a PRISMA flow diagram (Appendix 13). A list of excluded studies is available upon request. A table describing each of the 117 included studies is provided as Appendix 13, the master table of studies.

Descriptive Analysis

Study Characteristics

Of the 117 included studies, all were primary empirical qualitative research studies. A summary of the reported study designs or methods in the included studies is presented in Appendix 13. Most of these studies did not identify a specific methodology, with 28 studies offering no further description beyond “qualitative,” and 57 studies offering no further description beyond the use of analytic strategies such as thematic analysis (32), content analysis (15), or framework analysis (10). Of those studies that did identify a specific methodology, 16 reported using grounded theory and adapted grounded theory approaches or constant comparative analysis, six reported using qualitative description, three ethnography, and seven identified other methodologies (e.g., interpretive description, community-based participatory research, case study).

A summary of the reported data collection techniques is presented in Appendix 15. All studies collected data using interviews (52), focus groups (42), or interviews and focus groups (13). Some studies supplemented these data collection techniques (10) with other methods such as open-ended surveys,166 online focus groups,167 talking circles,168 case histories,169 community meetings,169 or the analysis of fax messages.170

Most of the included studies were conducted in the US and US territories (63), with an additional 18 studies from Canada. The remainder of the studies were conducted in the UK (15), Australia (8), Sweden (5), New Zealand (3), Romania (2), Norway (1), Portugal (1), and Poland (1). See Appendix 15 for more details.

These studies included data from 4,835 women, 258 family members or unpaid caregivers, and 433 clinicians. Sample sizes in each study ranged from one to 547. See Appendix 15 for further detail.

One hundred and two studies recruited participants based on particular aspects of their social or demographic identity. While some of these 102 studies focused on one identity feature, many focused on multiple identity features. Sixty-four studies recruited women who belonged to a minority ethnicity or culture; 13 recruited women of low socioeconomic status; ten focused on Indigenous women; six focused on women who lived in rural areas; seven focused on women who are lesbian, bisexual, or transgender; three focused on older women; and 11 focused on other aspects of identity (e.g., those with a high BMI, who are incarcerated, who are homeless, who are HIV-positive).

Summary of Quality Assessment

Overall, the quality of the included studies was assessed as reasonable. Some studies had more quality concerns than others; often the particular information asked for by the CASP tool was not included in the study report. The sixth CASP criterion (“Has the relationship between the researcher and participants been adequately considered?”) was very infrequently addressed in published manuscripts. As with many other a priori quality criteria for qualitative research, the absence of a factor may reflect word limit constraints in publication rather than methodological constraints. Others have noted that qualitative health researchers conventionally under-report these types of procedural details, and that the quality of the findings tends to rest more on the prowess of the researchers than on methodological processes.160,171 We did not exclude any study based on critical appraisal, and have published a detailed critique of this practice elsewhere.172

Qualitative Meta-Synthesis

The following sections explore the results related to the meta-synthesis. We begin with a description of the theoretical framework we developed to organize the findings of this analysis. After describing the structure of this framework, we will discuss findings related to each element of the framework in the context of cervical cancer screening in general (HPV testing, Pap smear, and any other modality included in our studies). Finally, we will detail findings specific to the subset of papers that explicitly addressed HPV testing, comparing and contrasting to the findings on all types of cervical cancer screening.

A note on terminology: we are using the words “women,” “woman,” and “female” to describe participants and targets of cervical cancer screening. Four of our studies included the perspectives of transgender men, who have cervixes and are therefore eligible for cervical cancer screening, but do not identify as female.166,173175 In this analysis we address the particular experiences of this group separately, to illustrate their unique perspectives and circumstances.

Framework

We have identified a number of factors that act as incentives or disincentives to women’s decision-making about participation in cervical cancer screening. In the descriptions of women’s experiences, perceptions, and preferences for cervical cancer screening, we identified the following factors that can act alternately as push and pull factors to screening participation: emotions, cultural and community attitudes and beliefs, understanding personal risk, logistics, multiple roles of women, relationships with health care providers (HCPs), comfort and inclusion in the health care system, and knowledge (Appendix 16). We will discuss each factor in turn, detailing how it could act as encouragement or discouragement for screening. Many of these factors are closely related. For example, a woman’s understanding of her own risk of developing cervical cancer was closely related to her knowledge of genetic and lifestyle risk factors of cancer. Some categories were more closely connected than others, and Appendix 17 shows a conceptualization of this schema. The studies we analyzed for this report focused on disincentives to cervical cancer screening more frequently and deeply than incentives, and our analysis reflects this. These findings have implications for implementation of HPV screening at the levels of policy, and clinician and patient education.

Many of the studies examined perspectives on cervical cancer screening from women sampled for a particular characteristic, including race, income, age, and sexual orientation. Our analysis considers the impact of these social identities on the way different factors are experienced. For example, women in most studies found attending a medical appointment a barrier to cervical cancer screening because these visits may require time off work, navigating through inaccessible transportation, child care, and more. These factors were strong barriers for women who held precarious employment, who had jobs that did not permit time off for medical appointments, those who could not afford to lose income in order to attend a medical appointment, those who did not have access to a car or convenient transportation, those who lived in rural areas with poor public transportation, and more. Some women may face none of these exacerbations, whereas others may need to navigate through several of them. As a result, a woman’s social location was highly influential on the way she experienced the incentivizing and disincentivizing factors we describe. In Appendix 17, the influence of social location is represented using a physical metaphor: the fulcrum on which the scale balances. First, a brief explanation of this metaphor, drawn from physics and requiring only basic understanding of force and levers: as the fulcrum moves away from the middle of the scale, the weight on the far side exerts more force; in order for the scale to balance, more weight must be placed on the short side. Applying this physical metaphor to our analysis, we conceptualize that for women with significant social and material resources, the fulcrum shifts to the left, and the disincentives exert less downward force. Fewer incentives or less strong incentives are needed to tip the balance in favour of screening. Therefore, it is easier for them to engage in the screening process. On the other hand, for women who experience social and material deprivation, the fulcrum moves to the right and the disincentive factors are heavier, and more incentives or more powerful incentives are needed to overcome these barriers. As a result, the balance is more tenuous and participation in cervical cancer screening is more difficult.

The magnitude of the factors, as represented in Appendix 17, is for illustrative rather than conceptual purposes. We identified that the factors that become most influential or most prominent differ for each individual. For example, a belief that she is at high risk for cervical cancer may be such a strong motivator for a woman to find ways to overcome other significant barriers. For another individual, a past negative experience of sexual abuse may be so traumatic that she is unwilling to subject herself to a cervical cell scrape, no matter how convenient and important she believes cervical cancer screening to be.

Appendix 18 illustrates how this framework may operate for an individual. A disadvantaged social location may move the fulcrum to the right, meaning that the disincentive factors are now exerting more weight. This exemplar individual may experience incentivizing factors, for instance, recognizing herself at potential risk for cervical cancer, having a positive relationship with her HCP, and having an understanding of what cervical cancer screening entails. However, the combination of her social location and the disincentivizing factors she experiences tip the scale in toward foregoing participating in cervical cancer screening. Not all factors are at play for all women, as illustrated by the omission of two factors in Appendix 18. Factors may cluster in different relational groups for different women. For example, sometimes knowledge may be most closely related to relationship with HCP. For others, it may be more closely aligned with cultural and community attitudes and beliefs.

As described in the methods section of this report on patient preferences, many of the studies we analyzed addressed cervical cancer screening modalities that do not include HPV testing. We included these perspectives because they are often relevant to HPV testing (e.g., embarrassment of providing a cervical cell sample, inconvenience of attending a medical appointment), even when the data describes another type of cervical cancer screening; these are relevant to the policy concern motivating this HTA. In order to facilitate the policy decision considered by CADTH, the second part of this report highlights findings that are particularly relevant to HPV testing.

Factor 1: Emotions

This theme discusses emotional discomfort deriving from modesty, shyness, and embarrassment concerns and how vulnerability, shame, and powerlessness influence women’s screening behaviours. Moreover, women commonly reported fear, in particular, of the test; pain and discomfort associated with the test; test results; and cancer more generally. Emotional responses were mediated in some women by fatalistic beliefs about cancer that discouraged active participation in screening, or on the opposite end of the spectrum, strong preventive health orientations that strongly encouraged preventive action, even in the face of difficult emotional responses.

Emotional Discomfort and Distress

Women reported emotional discomfort and embarrassment as common barriers to screening.169,174190 Modesty and shyness were major sources of these emotions for many women during the screening procedure.179,181,191195 Women felt embarrassment from the test procedure175,178,182,190,191,193,194,196208 and from exposing their bodies to a stranger.185,186,193,197,201,202,205,209,210 Due to women’s perception of the link between sexual activity and need for HPV testing, embarrassment was also a consequence of women’s anticipation of their communities discovering that they engaged in screening,185,188,189,202,211 which, for some women, amounted to shame from their community.212,213 Some women anticipated embarrassment upon diagnosis of HPV because of its perceived association to sexual infidelity.214 For some, experiencing embarrassment was a sufficient reason not to attend screening.188,215,216 For others, however, embarrassment was not a disincentive170 because these concerns did not outweigh the importance of screening and maintaining their health.193 Findings related to the stigma of HPV diagnosis and sexual infidelity or promiscuity will be discussed more fully in the last section of our results.

Other aspects of emotional discomfort include vulnerability, shame, and powerlessness.174,175,189,197,200,213,217,218 Some women felt vulnerable because of the male gender of the sample taker.186,219,220 Others experienced a sense of powerlessness from how the cervical cell sample was obtained,174,189,197,219 especially around a lack of privacy during this procedure.175,185,213,215,220 In general, women emphasized the importance of privacy and the need for sensitivity around screening.175,185,187,191,194,199,202,209,213,221 The emotional distress of cervical cancer screening was exacerbated for women who had previously experienced sexual assault190,197,203,204,206,213,222,223 and those who don’t or hadn’t yet experienced penetrative sex.166,176,211,224 Transmasculine people discussed the potential for experiencing emotional distress due to the dissonance between their gender identity (male) and participation in an intimate exam involving penetration of a body part associated with women.166,173175 For some women who were survivors of sexual assault, abstaining from screening was a choice made to protect oneself from reliving traumatic experiences of sexual abuse and violation.168,213 Indigenous women in two studies considered Pap smears to be an extension of colonization, with reminders of sexual abuse experienced in the residential school system.168,213

Fear

Some women reported fear while engaging in screening, which included fear of the test, fear of pain and discomfort, fear of the test results, and fear of cancer. Fear of cervical cancer screening was a commonly reported concern, regardless of the screening modality.175,178,186,191,195,202,205,216,223,225,226 This was derived from fear of cancer treatment,227 fear of waiting for the test in doctor’s office,178,191 and fear from the unfamiliarity of procedure.205,223,226 Women who engaged in routine screening feared pain,175,176,181,182,184,185,187,190,193,198,206,216218,221223,226,228230 and discomfort,178,181,185,193,196198,206,217,220,230234 which may result from the screening procedure. Discomfort, in particular, was perceived as a consequence of the care provider,198,202,223,226 the way the procedure was performed,198,226 inappropriate sizing of the speculum,198,218 bleeding from the test,182,205,216,220,230 and the invasiveness of test.182,195,198,211,213,218,223,225,230,234,235 For many, the pain and discomfort from the test were strong reasons to not attend screening.170,176,177,185,197,208,216,220,226,228,232,234236 Women used strong language when describing the pain and discomfort of the test. We found metaphors of sexual assault and rape used to describe this experience: “During focus group discussions, some women described feeling as if they were ‘molested’ during the examination” (p.1,121197).197,203,204 Women’s experiences of cervical cancer screening ranged from unpleasant to intensely traumatic, and may be linked to past experiences of sexual assault.197,203,206,213,222,223 For some, this fear may be alleviated either through emotional support,202 adequate and clear information,237 and speaking to the doctor.200

Women reported fear of test results,176,178,183,185,190,197,202,203,205,216,219,220,222,223,225,226,228,234,235 such as receiving a cancer diagnosis.176,180,185,192,194,196,197,206,209,215,220,225,229,238 This fear became a significant barrier to engaging in screening behaviours,191,194,196,216,229,234 which may be allayed through an adequate explanation of the test results.237 Moreover, closely associated with the fear of test results among those engaging in HPV testing was the stigma of HPV-positive status.214,236,237 Stigma, either from their cultural enclave or from the broader society, was a significant barrier to starting and maintaining HPV testing for cervical cancer screening, but was less of a concern for women who were participating in cervical cancer screening with Pap smear.178,180,190,239 For others, however, stigma did not discourage screening behaviours,240 and could be dissipated by properly explaining the diagnosis, management of HPV, associated risk of cervical cancer, and availability of treatment for cervical cancer.237 These women reported relief and reassurance as their prime motivators for screening.201204,241 Women sought to put their mind at rest201,204 and reassure their health status through screening.236,242,243

Finally, women commonly reported fear of cancer,175,181,185187,191,202,208,209,226,227,229,244 in particular, an intense fear that cancer inevitably results in death.186,192,202,227,229,245,246 Some women derived their fear from being HPV-positive, and efforts to describe that most HPV does not lead to cancer did not alleviate these women’s concerns.238

Personal Values and Emotional Orientation

An important theme that is relevant to several factors is women’s personal values and their emotional orientation to concepts of illness, cancer, risk, and medical intervention. Many women reported a sense of fatalism related to screening.191,197,202,204,215,216,220,228,229,233,241,245,247,248 This fatalism resulted from a sense of powerlessness that if the screening test came back positive, they could do anything to remediate their situation.197,202,215,229,245 For example, women in one study described fatalistic feelings about HPV screening due to the lack of treatment available for HPV.237 This sense of fatalism was described by women as a barrier to initiating and maintaining their screening behaviours, related to a diagnosis of cancer and not a specific screening modality.202,204,207,216,228,233,247

Positive emotions about screening were typically described as a preventive health orientation and self-efficacy. These women had a propensity to prevent cancer,176,180,191,203,206,212,215,220,223,226,228,247,249,250 which propelled them to proactively seek screening, treatment, or relevant knowledge.179,181,193,194,211,214,223,224,226,237,238,241,249251 Some women perceived their engagement in screening as a moral obligation to uphold one’s health.170,194 These beliefs may be strengthened, especially for initiating and maintaining screening, through encouragement from their families, peers, and HCPs.180,181,198,202,206,226,241,243,247,249,252,253 These beliefs were closely linked to acknowledgement of the importance and benefits of screening,181,193,202,226,238,241,243,247,249 which increased their motivation and self-discipline to pursue screening while acknowledging its barriers.181,193,241,249,252 Conversely, the lack of a preventive health orientation contributed to inaction and apathy toward engaging in screening,182,194,200,201,206,209,253 and in some cases, denial of the need and importance of screening.200

Factor 2: Cultural and Community Attitudes and Beliefs

The attitudes and beliefs a woman holds related to those of her culture or community significantly influenced how she perceives cervical cancer screening, as well as related concepts of health, illness, and the health care system. Women identified cultural practices and beliefs that were barriers and facilitators to screening. In particular, some women reported difficulty in aligning the values and beliefs of their culture with those of the health care system. This cultural incongruency could function as a disincentive to screening when it resulted in the perception that the health care system did not respect culture values. The importance of culture and community was also apparent in many studies that describe cultural dialogue and community support as integral to establishing and maintaining screening behaviours. This dialogue was especially important for conceptualizing the risk factors of cervical cancer, which influenced women’s personal understanding of their risk and the reasons to pursue cervical cancer screening.

Cultural Practices and Beliefs

Women from many different types of communities identified their community’s culture as a barrier to screening.179,181,186189,191,198,199,201,202,205,212,229,234,247,254,255 The practices and beliefs embedded in community life were significant obstacles to screening.177,186189,191,198,201,202,205,211,224,227,234,239,246,254 For example, several authors documented a belief in the lesbian community that women who have sex with women do not need to participate in cervical cancer screening because they do not have sex with men.256 Women in communities where female genital mutilation is commonplace may forego screening because they anticipate judgment and shame from Western HCPs.186,187,211,234

Cultural beliefs could also influence a woman’s perceptions about the need or importance of screening. Many women derived a preventive health orientation from cultural and community beliefs, which served as facilitators to screening.168,186,199,204,211,226,233,239,248 On the other hand, some women relegated the need for a preventive approach to their health care because they believed that their religion served this purpose.186,187,227,229,233,234 Fatalistic beliefs and beliefs in predestination were widespread in some communities and presented significant barriers to pursuing screening options.180,186,188,199,204,212,228,229,233,257 These beliefs stemmed from community practices but manifested in personal emotions and beliefs involving screening.

Cultural (In)Congruency

Many women reported difficulties with aligning with the values and practices of the health care system, which became disincentives to screening.168,179,180,186188,192,195,199,202,205,211,213,224,233,246,254,255,257 Some women identified virginity as a point where their values diverged from that of the health care system. Women equated the privacy, sanctity, and sacredness of their body to preserving their virginity. However, the same women perceived the health care system to not value virginity because of the invasiveness of the procedure that does not promote their cultural values and beliefs.186,188,211,224,233,254 This understanding may derive from the belief of some women that virginity is linked to physical penetration. Moreover, other women may believe that loss of virginity is a consequence of any sexual contact. Health care professionals must be equipped with diverse conceptualizations of health, especially in relation to medical procedures that may be considered intimate and impinge on the values and beliefs of certain cultural groups. Concerns about speculum use and penetration were found in papers that solicited views from women identified as Muslim, Mexican-American, and lesbian.176,186,224,230 Other women reported alienation from the health care system,168,213,224 often catalyzed by interactions with culturally insensitive care providers.180,187,199,205,211,224,246,255 For example, Indigenous women reported alienation from the health care system when they interacted with clinicians who did not understand the implications and history of abuse associated with the colonization of Indigenous peoples.168,213

Women reported cultural congruency as an incentive to pursue screening.168,179,202,224,226,229,231,233,234 Receiving positive health messages from culturally congruent care providers from within their communities;168,224,229,234 moving care from a sterile medical setting into a welcoming, comfortable community space;168,226 and combining both traditional and Western healing were important ways to balance their cultural values with the practices of conventional health care.168,179,202,233

Community Discussion

Many women were motivated to pursue screening due to a community dialogue on cervical cancer and Pap testing.168,169,198,202,205,209,211,223,224,226,229,233,239,244,247 These women identified the dialogue as a way to navigate through their community’s infrastructure barriers to screening.198,224,233 An increase in community awareness of screening supported women to not just start but also continue participating in screening programs.168,224,229,233,244 Social support was a notable incentive to pursue screening.168,180,202,209,211,212,224,226,229,233,234,239,241,247,248,254,258,259 Social support from the following groups was described as helpful and desirable: mothers,202,223,224,248 friends,202,209,211,212,223,226,233,234,247,248,259 family,195,202,212,226,233,234,254,259 partners,180,202,209,212,233,234,239 health professionals,168,202,234,239,258 faith leaders,229,233 survivors of cancer,244,259 and the community.168,212,223,233,241 When support was not available from these sources, participation in screening was less likely.179,188,189,195,202,205,212,254 In particular, an unsupportive partner could be a major barrier to continuing screening.176,205,229,251,258 Women were concerned about the jealousy of their partner,176,205,229,258 and feared their partner’s reaction upon disclosing a positive HPV status as barriers to maintaining screening.251 In some ways, these fears mentioned were derived from the absence of a community dialogue177,179,180,188,189,191,199,202,205,211,212,221,224,229,231,234,239,244,246,248,254,257 about female reproductive and sexual issues,177,191,199,202,211,224,234,239,246,254 cervical cancer,177,180,202,211,212,229,239,244,248 and Pap testing.205,212,231,244,254 The lack of a community dialogue and understanding about these issues could also be related to an emphasis on cultural privacy in the community, which some women identified as a barrier to screening.168,169,188,189,199,208,212,213,224,229,234,248,254 These women considered their bodies a private topic to discuss with their immediate family only.189,199,224,254 They resisted interference from external members such as health care professionals, especially in small communities,168,189,208,213 in order to maintain their “cultural safety.”169

Community Understanding of Risk

Women’s perception of their personal risk for cervical cancer may be derived from or built upon foundational cultural beliefs. In particular, several studies from different communities described perceptions that women who are sexually inactive are not at risk for cancer and HPV, and therefore, do not require screening.177,188,189,194,211,221,224,239,248,260 On the other hand, communities thought that women who are married or sexually active should pursue screening.177,188,189,211,221,224,239,248 Moreover, communities maintained that the absence192,212,229 or presence192,199,212,248,254 of physical indicators of health were significant incentives or disincentives to pursue screening. When women discussed “symptoms,” they typically referred to regular menstrual cycles, and lack of symptoms associated with STIs. Finally, women named their community’s inaccurate or incomplete perception of risk204,211,212,229,247,248 due to their lack of knowledge or confusion with their current understanding of screening practices and guidelines.229 Cervical cancer screening using any modality was closely associated with sexual activity by many communities,177,178,180,188,189,194,202,211,221,234,244,254,258 which raised the stigma for those who chose to pursue screening, and added another barrier to maintaining screening behaviours.168,178,180,211,229,234,244,258

Factor 3: Understanding Personal Risk

The way in which women identify their own personal risk for cervical cancer, including beliefs and perceptions of vulnerability, influences their decisions and behaviours concerning screening practices. Although these factors are interwoven with their knowledge of personal risk (i.e., general understanding of cervical cancer and its risk factors, screening procedures, and link between HPV and cervical cancer) and how they see themselves in relation to these factors, there are specific elements that are important to acknowledge.

Specifically, the appraisal of one’s personal risk draws on a person’s understanding of their family history of cancer (biological risks); lifestyle factors (physical and behavioural risks); age-related risks, such as menopause; and general well-being and being asymptomatic.

Biological Risks

Many women used the absence of a family history of cancer to position themselves as being at low risk for cervical cancer, which was used as a justification for not participating in cervical cancer screening.188,191,195,203,216,220,226,232,236,241,245,248,252,256,260 This is not congruent with biomedical understandings of cervical cancer etiology, especially with regards to the link between cervical cancer and high-risk HPV, which is not hereditary.261 In addition to this disincentive to obtaining check-ups, it also removed some worries and anxieties around cancer diagnosis.260 Overall, the notion of “cancerous genes” was important to the way women understood the significance of cervical cancer screening to their lives,260 and some women perceived a biological link as more impactful than behavioural or physical risks.256 This factor also worked as an incentive: women who had close family members who had been diagnosed with cervical cancer expressed a strong commitment to screening participation.185,200,232,242,248,250,252,255,260,262

Physical and Behavioural Risks

Several studies noted women’s decision to not participate in cervical cancer screening due to their perception that they were at low risk of cervical cancer because they did not engage in lifestyle behaviours that would predispose them to cervical cancer.170,173,177,182,185,188,189,191,194196,199,204,205,209,216,228,236,239,245,247249,252,256,258,260,262 These perceptions of risk were primarily based on whether they were in a long-term monogamous relationship or were active with multiple sexual partners. Some lesbian women perceived themselves to be at lower risk of cervical cancer because they do not have sex with men.256 Women also reported an array of risk factors related to their lifestyle, such as smoking, unstable housing, poverty, unhealthy diet, lack of hygiene, use of intrauterine devices, douche solutions, certain types of toilet paper, birth control, HIV infection, changes in menstrual patterns, drug use, and promiscuity, which may serve as drivers or disincentives to screening participation depending on emotions or an orientation toward preventive health care.170,173,176,178,184,188,189,192,194,216,223,228,231,232,236,243,245,247,249,250,252,258,260,262265 Some individuals also suggested that anyone with a cervix, despite their gender identity, behavioural, or personal lifestyle choices, should engage in screening.173

Age and Life Stage–Related Risks

Some women perceived that cervical cancer risk reduces with age and, therefore, screening was less important or not needed as frequently for older women.196,211,216,220,228,239,242,248,249,266 “Older” was defined variably (and sometimes not at all) in different studies but was often linked to menopause rather than a particular age. Moreover, women reported that a series of several previous cervical smears displaying normal results gave them a sense of security in their assessment of themselves as low risk.220 It was noted that the challenge of navigating through the social norms associated with the physical changes that come with aging and menopause may divert some post-menopausal women away from engaging in screening practices.220 For other women, this understanding led them to adopt a preventive health orientation and allocate more time and attention to their health by engaging in screening initiatives.248

General Well-Being

General well-being and feeling asymptomatic, such as a lack of pain and having regular menstrual cycles, were substantial disincentives to cervical cancer screening.170,173,182,185,187,191193,196,197,199,203,204,208,211,215,220,221,226,228,233,234,241,242,251254,264 Some women who were motivated to participate in screening drew their motivation from a desire to reassure themselves of their cancer-free health status despite the lack of symptoms.168,173,177,185,203,205,220,242 Moreover, these women were incentivized to engage in screening because they believed that an early diagnosis may provide them with a better prognosis, and a negative screening result may give them the sense of security and relief they want.168,173,177,185,187,203,220,242 Finally, some studies reported that the awareness of one’s individual body, such as being alert of bodily changes and having a preventive orientation toward their health care, were significant incentives for women to participate in screening.173,191,201,215,232,253

Factor 4: Logistics

Logistical challenges acted as a strong disincentive to screening. A general lack of time was commonly reported by women, which required them to strike a balance between multiple priorities, such as family and work commitments, with cervical cancer screening. While the logistical barriers detailed in this section are possible to remediate individually, these efforts may not counter the tendency of women to prioritize other commitments over preventive health care. A more holistic approach that encourages the early socialization of screening by integrating community and social groups may be needed.170,176,178,197,226,235,241,253,267

Balancing Priorities

Women juggled work and family commitments,175,176,178,180182,184187,190,191,193,194,197,199,200,207,208,211,215,217,220,222,223,225,226,229,235,239,242,253,254,268,269 childcare responsibilities,170,178,180,182,184186,191,193,204,211,215,216,220,221,224,226,229,254,268,269 and navigated through transportation challenges to attend screening appointments.178,183,184,193,200,204,211,215,221,222,224,226,229,232,235,246,248,253,223 Appointments at clinics that were far from their home or at inconvenient locations were taxing because of the travel time involved; women living in rural areas faced more challenges in this area because clinics are likely to be located farther away and there is typically less public transportation available.208,215 Women suggested that providing cervical cancer screening in local community hubs or other convenient locations would facilitate attendance.178,185,197,226,235,253,264 Long wait times in the clinic exacerbated the challenge of attending screening appointments and decreased women’s willingness to attend screenings in the future.176,180,187,189,197,198,217,232,235,248,268270

Scheduling Appointments

Most cervical cancer screening programs, regardless of the screening modality, require inperson attendance at a medical facility. Women reported a lengthy list of logistical barriers to participating in screening, for example, the scheduling of appointments was challenged by inflexible clinic hours that made it difficult to remember and schedule appointments.182,190,191,198,215,222,225,228,232,254,271,272 Reminders and encouragement from the clinic and HCP would help overcome the challenge of remembering to schedule and attend infrequent medical appointments.186,187,190,197,221,228,235,253,255,268 Many women suggested that having appointment times outside of traditional working hours would alleviate many of these logistical barriers.177,178,197,206,208,217,235,239 Moreover, women appreciated the efficient use of their clinic appointments by combining cervical cancer screening with other services; contraception, other cancer screening, and general health care were mentioned as potential candidates for combining with cervical cancer screening.178,197,217,226,228,235,242,253,256 Self-sampling at home may alleviate some of the logistical barriers to attending in-person appointments, although this screening modality was not unanimously accepted.207,208,224,237 Scheduling medical appointments by phone was often named as a locus of communication challenges for women, especially those who did not speak the majority language where they lived.179,182,189,193,208,234,239,248,269

Communication

Communication challenges were also mentioned as barriers to screening. Women described communication barriers as arising from a lack of time, effort, and respect from the clinical staff that prevented person-focused communication between patients and care providers.169,176,180,187,194,195,198,205,228,234,235,257,269,270 Most frequently, communication challenges arose when women spoke a different language than their care provider.177,179,180,187,188,191193,195,198,205,211,216,224,226,227,234,239,248,254,268,269 These challenges could also occur for women with mental health issues and those who are deaf.225,267 Women who faced communication challenges struggled to understand the need for cervical cancer screening, including its procedure and follow-up protocol.177,179,180,190193,198,205,211,216,224,226,227,234,239,248,254,257,268,269 Women reported logistical and other concerns with interpreters such as not having cultural knowledge and appropriate medical terminology.180,184,216,239,267 A lack of social distance in rural and culturally close-knit communities may mean that women are hesitant to use interpreters, fearing that they may disclose confidential health information to others in the community.169,198,222,248,254

Finances

Women in American studies often mentioned health insurance and the cost of screening as a logistical barrier, although this theme was not prevalent in countries that cover costs of cervical cancer screening through a universal health care system.176,180,183,189,191195,199,200,207,211,215,222,224,225,229,234,248,251,253,257,268,272 For these women, covering the costs of cervical cancer screening was a strong incentive to participate.176,226,234,242,253,257,264,272

Factor 5: Multiple Roles of Women

Familial Responses

Many women reported placing the needs of children, partners, and in-laws above their own, which often resulted in women foregoing timely and appropriate health care. Managing time amid familial obligations was perceived to be a barrier for accessing preventive care because of the demanding nature of domestic responsibilities;168,169,177,180,185,190,191,197,208,215,223225,235,246,254,268 for example, women’s roles providing child and elder care, or in supporting the family finances through paid employment and budget management. When participation in cervical cancer screening has a financial cost (e.g., time off work, parking fees, fees for the service itself), it may be de-prioritized by a woman, who may choose not to forego paid employment or to allocate family resources to children’s activities.168,191,199,217,225,234,268 In addition, women who have obligations with a family business or caring for children or grandchildren are also challenged to attend medical appointments for cervical cancer screening.190,191,268 Offering appointments outside traditional business hours would assist women in balancing their personal, domestic, and employment activities.177 Women in many studies expressed that their own health was a lower priority: “their children, husband, in-laws, household duties, cultural obligations and work outside the home came before their own needs: ‘My health … it’s not important’” (p. 182).254

In addition, the family structure in some cultural groups can significantly influence a woman’s ability to seek health care from a male physician, thus posing additional barriers for accessing care.254 On the other hand, a strong sense of familial responsibilities provoked women to self-care in order to remain healthy such that they are able to properly care for their family. This belief was more prevalent in cultures that associated self with family kinship such that caring for oneself is the same as caring for one’s family.176,199,213,223,226,236,241,248250,254

Communication

Some women highlighted the significance of communication between mothers and daughters, and the need to nurture strong connections among various groups and communities of women. In Indigenous cultures, for example, many women commented on how the understanding of women’s embodiment and sexuality were changing in younger generations, which made it difficult to establish and enhance the relationship between mothers and their daughters. These women made a strong and purposeful effort to connect with their children and speak to them about these sensitive issues in order to remediate the lack of dialogue with their own mothers.213

Factor 6: Relationship With Health Care Providers

HCPs had a significant influence on the screening practices of women because they are well placed to engage their patients in screening practices.174,175,186,187,189,202,226,234,237,243,252,253,255,265,272,273 Many studies reported that patients approach their primary HCPs as the first source of medical information.186,187,189,200,226,237,241,243,248,253,258,274 This relationship was mediated by women’s trust in their HCP, and was one of the strongest factors that enhanced the patient–provider relationship.186,187,217,252,266,269,272

Satisfaction With Health Care Provider’s Communication

The HCP’s communication style and bedside manner had a significant effect on their relationship with patients, which in turn affected women’s decisions about when and how to engage with the health care system, including participation in cervical cancer screening. When women felt included in making decisions about their health, they positively perceived recommendations for cervical cancer screening from their primary HCP.186,189,197,202,205,208,210,213,215,220,223,232,237,242,243,248,249,255,259,266,269,273,275 The practice of patient-centred care nurtured the trusting relationship between patient and provider, and when not present led to barriers in patient care. Women gave examples of HCP behaviour related to cervical cancer screening that eroded trust: not receiving a satisfactory response after sharing vulnerable information,175,272,276,277 when the HCP did not understand their individual situation,166,173,175,256,272,277 or did not allow them to ask questions concerning their health.187,189,190,199,216 A lack of trust with the HCP also influenced women’s feelings of concern for their privacy and confidentiality,187,205 which was not a concern for women who were satisfied with the care they received.170,180 Overall, women were less likely to participate in cervical cancer screening when they were not in a trusting relationship with their care provider,174,187,203,223 or when they felt taken for granted and isolated,219 forgotten or neglected,176,189 or degraded and disrespected.170,175,187,190,195,199,203,210,211,216,222,226,241,247,266,272,273,275,277 These types of negative experiences often negatively impacted future screening with different providers. Previous negative experiences acted as a barrier to engaging with the health care system in general, not just the particular HCP.169,175,176,180,187,195,198,205,228,234,235,269,270

Women were more likely to accept cervical cancer screening when it was offered by their care provider, especially when they had a trusting relationship.174,175,178,180,189,190,197,223,226,235,242,272 When women were satisfied with the medical care provided, they felt empowered175,186,203,226,232,272 and comfortable with their decision to start and continue screening.167,175,186,223,273 Some women recognized the value of medical encounters with HCPs because they encouraged communication about their health.239 An important feature of this experience was having the HCP explain the screening procedure, which enabled women to make informed decisions about participation.175,186,189,190,203,217,218,223,232,247,248,276

Personal Characteristics Influencing Experience of Care

An individual woman’s personal characteristics (e.g., culture, ethnicity, religion, literacy, health status, socioeconomic status, and sexual orientation) could influence the patient – provider relationship in a way that may disincentivize screening participation. Women reported negative interactions with HCPs related to personal characteristics such as female genital mutilation,216 weight,181,215,253 or sexual orientation.166,175,277 Other women felt that HCPs perceived them to have lesser knowledge based on their socioeconomic status and race,223,234,257,268 or blamed them for their health status181,257 or medical condition. A language mismatch or lack of proficiency in the English language exacerbated communication issues in this group of women.180,188,193,196,211,226,227,234,239,241,247 Women also reported that HCPs were insensitive to their values and beliefs, which became a strong disincentive to screening.175,180,245,256,277 Women overcame these barriers when their HCPs personalized the medical encounter for women with different backgrounds, beliefs, and values.173,174,189,190,248,272 Similarly, preferences for HCP with similar ethnic, cultural backgrounds, or life experiences were recommended,179,204,224,232,241,248,254,266,277 as well as provision of culturally sensitive services in accordance to religious beliefs.180,189,254

Gender

The gender of the HCP acting as a sample taker was an important, recurrent theme in multiple studies.167,169,178,179,186,187,189,194,195,197,200,203,204,211,213,216,221,223,226228,233,235,236,239,241,242,248,269,273,277,278 Women generally preferred screening by a female HCP.169,178,186,195,204,223,226228,239,241,272,273,276,278 This preference was influenced by multiple factors; for example, feelings of embarrassment and exposure that accompanied having a male HCP.176,186,187,189,203,219,221,273 In some cases, women’s partners did not allow screening by a male HCP174,189,209,272 due to values and beliefs concerning privacy of women and the intimate relationship between two individuals. Lack of availability of a female care provider could be a significant barrier to screening participation,187,226,235 sometimes resulting from a woman’s reluctance to request a female care provider.216,227 When female providers were available, women cited this as a major facilitator of cervical cancer screening participation.167,187,194,197,200,203,204,211,213,221,226,233,235,236,241,248,269,277,278

Initiation by Health Care Provider

Many studies reported that HCPs play a significant role by initiating a discussion on cervical cancer screening with women, many of whom first attended screening due to these discussions with their HCPs.175,186,189,190,216,223,237,252,265,272 Women’s HCPs also encouraged them to participate regularly,179,186,189,190,194,197,202,204,228,235,237,241,243,248,253,255,259,279 especially for those who felt embarrassed or fearful of screening.200,203 Reminders by HCPs or clinic staff played an important role in maintaining regular screening over time.175,179,190,193,204,208,226,234,249,253,255 These results indicate that an HCP’s active outlook toward screening practices translated into women’s positive reactions and engagement in screening. The lack of such recommendations by HCPs became barriers for women to partake in screening.193,196,216,227,245,257,277

Studies of transmasculine people described the reluctance of HCPs to initiate cervical cancer screening with these men. This reluctance is perhaps due to the lack of evidence or provider ignorance about the need for screening in trans men,173 and perhaps due to the sensitivity of the HCP in being reluctant to cause emotional distress by initiating a discussion that would remind the man about the dissonance between his sex assigned at birth (female) and gender identity (male).

Factor 7: Comfort and Inclusion in the Health Care System

Women’s comfort and relationship with their primary HCP influenced their feelings of trust and inclusion in the health care system. Some women expressed doubts in the competence and beneficence of their HCP, worrying that “the health care system or the doctor was not perceived to be reliably operating to their benefit” (211 p.726) 176,211,228,243,249,253,255,257,269 These negative perceptions emanated from their experiences with the health care system. As further explored in the section about the importance of relationships with HCPs, the “apparent spillover benefit of a provider’s communication style to encompass medical competency was noticeably linked to women’s perceptions of trust in both their providers and the medical care system.”255

Relationships

While some women indicated that a trusting relationship with an HCP who cares for them as an individual person170,173,175,190,248,257,272 fostered comfort with screening and health care in general, other women were more comfortable in a setting that was more anonymous, to facilitate sharing personal details and receiving intimate care.170,231 Many women interpreted reminders and encouragement from HCPs to engage in screening as a show of care and concern,179,194,204,229,237 although some perceived these invitations as unwanted and invasive.170 Inclusivity is fostered when women can identify or relate to information offered in patient education and recruitment materials.223,230,256,277

Many women expressed a preference to receive care in locations and from care providers who understood their experiences.175,180,230,255,272,277 For example, in a study of lesbian women, participants “articulated a preference to undertake any future screening at a women’s health clinic, especially one that specialized in lesbian health. They perceived these clinics to be a safe environment, free from intimidation and judgement, which would enhance their chances of accessing future screening.”230 Demonstrations of cultural awareness were important facilitators of trust and inclusion in the health care system, especially for newcomers who may come from starkly different health care systems and need to orient themselves to screening programs.175,187189,204,226,231,239,272 For example, for immigrant groups from some countries, cancer might not be a familiar concept, and the concept of screening for cancer in absence of symptoms might be quite new and confusing. Pratt et al. note that “Some [Somali immigrants] felt that cancer was a US disease, and not one they had been aware of in Africa. As a result, having screening felt very uncomfortable, especially when the purpose of the test wasn’t clear” (p. 7).233 Other immigrant groups may prefer the health systems or traditional knowledge of their place of origin. For example, Chinese immigrant women in several studies expressed a preference for both traditional Chinese medicine, but also for the Chinese health care system: “participants recounted myriad personal experiences to illustrate the superiority of Chinese medicine across a broad range of health topics” (p. 5).231 This preference included the Chinese system for cervical cancer screening, described by participants as organized through one’s employer, hospital-based, compulsory, and efficient.226,231

Interactions With the Health Care System

When women encountered culturally insensitive or stigmatizing treatment in the health care system, they were less likely to engage in future screening,170,175,180,181,190,201,223,257,260,272 this was the case for a woman who “had attended in the past but following a bad experience, in which she felt her anxiety and unease had been dismissed by the smear-taker, had ceased attendance” (p. 170).260 Negative interactions with their own HCP, as previously discussed, were damaging, but so too were negative interactions with other care providers, administrators, and health system bureaucracy. For instance, women mentioned past instances where they or their relatives had been ignored when they had pain or illness as an experience, which made them reluctant to engage with the health care system.220 More frequently, women discussed their experiences of feeling stigmatized in the health care system as a result of their weight, smoking habits, English-speaking ability, HIV status, or socioeconomic status. This stigmatization frequently resulted in disengagement from health care services.170,180,181,211,215,220,228,236,249,270,175,189,190,223,257

Screening Programs

For some women, organized screening programs were also a cause of distrust in the health care system. Some women did not trust the medical benefits of screening, and were not convinced of the necessity of participating in a population-based preventive screening program such as cervical cancer screening.170,193,197,211,239,249,257 Others expressed a preference for traditional or alternative forms of medicine, and a general skepticism or wariness of the interventional nature of Western biomedicine.192,199,220,228,229,231 Others may accept the scientific premise of cervical cancer screening and treatment, but maintain their skepticism concerning the organization and efficacy of the medical system and its ability to deliver prompt, reliable, sensitive, and specific results, and facilitate access to effective treatment if needed.194,220,226,241,243,246,248,257 A small number of women expressed opinions that population-based programs were coercive, encroached on private aspects of life, or treated women like objects.170,249

Factor 8: Knowledge

This domain describes the role of knowledge and information in incentivizing the screening process. Women identified many aspects of acquiring and using knowledge about screening. In particular, women reported that there was a lack of access to accurate, complete, and useful information about cervical cancer screening, which became a disincentive to screening. Misconceptions, misinformation, or too much information compounded this experience. Specifically, women reported confusion and a lack of understanding concerning the purpose and need for cervical cancer screening. Women sought logistical information about screening, such as locations, testing procedures, and results. These women identified educational campaigns as significant motivators to screening; in particular, it enabled them to understand the different aspects of cervical cancer and HPV screening and be more informed and confident in making health care decisions.

Access to Information

Knowledge is an essential domain for understanding the incentives and disincentives to screening. In particular, women reported a lack of access to information related to cervical cancer screening179,186189,192,194,195,208,215,218,229,236,246,251,257,269 such as symptoms, treatment, cell sampling procedure, the necessity of cervical cancer screening, and the implications of a positive Pap smear or HPV test.179,186189,194,195,208,215,229,246 For some, this translated to a lack of awareness of screening, and limited access to sufficient and accurate information for making health care decisions.186189,194,229,236,246,247 Furthermore, women reported many misconceptions of screening, which for some, lead to abstaining from screening.179,187,188,246,257,269

Women were unaware of cervical cancer screening programs, and their purpose and the target population.185,197,217,234,249,257,259 While many programs exist to accommodate women without health insurance or those who experience other challenges to screening participation, women in those target groups were mostly unaware of these programs.176,180,222,234,253,257

Women identified educational interventions or campaigns as important sources of information and motivation to participate in screening.176,186189,200,208,221,223,244 These interventions were perceived as accommodating if they occurred at a convenient location in the local community or clinic.176,186,189,229,244,257 Across many groups, trust in screening programs and the health care system was facilitated by education programs designed to widely inform women about cervical cancer screening and normalize the screening process.189,217,239,256,257 The participation of other women in these programs was motivating for some women to partake in screening, and helped them to find a sense of belonging within the health care system. Other women mentioned clear, accurate information and reminders from primary care providers,179,187190,218,223,226,229,247,257 increased availability of written information,244 community examples,229 and information from the media184 as incentives to screen. Women recommended designing educational materials to meet the accessibility needs of women who communicate in different languages and those with low literacy levels.186189,221,271,272

Understanding of Purpose of Screening

Overall, most women did not understand or were confused about the purpose and need for cervical cancer screening.176,178,187189,192,194,203,204,218,226,236,246,247,257 On the one hand, some women believed that screening was either a test for STIs or a diagnostic test for cancer.186,192,203,204,257 On the other hand, certain women correctly identified cervical cancer screening as a test for cancer, in particular, its early detection.176,203,204,236 These women reported a need for education on the purpose for cervical cancer screening,176,186,189,262 and information related to the test procedure.176,186,189,194,208

General Knowledge About HPV

Concerning information related to HPV, women desired general knowledge about HPV, such as its source, transmission, treatment, health and social consequences, risk factors, relationship with cancer and STIs, the time between contracting HPV and developing cervical cancer, practicalities of screening options (e.g., how long it takes to obtain and interpret test results, what the next steps after diagnosis are), reliability of HPV testing compared with Pap testing, the purpose of screening tests, and the relationship between HPV screening and HPV vaccinations.185,189,204,207,208,214,217,237239,245,250,251,271,280

There is great value in enabling women to coherently link these individual pieces of information together. Brown et al.214 differentiated between two groups of women. On one hand, some women who were knowledgeable about the different aspects of screening were not empowered to maintain their screening behaviours because these aspects were not coherently linked to each other. That is, while they understood the “facts,” they did not draw the connections between these pieces of information needed to grasp the implications of the knowledge. On the other hand, for women who did understand the implications and were able to make the link, different pieces of screening-related information showed greater motivation toward screening and an orientation toward preventive health.214

Screening Interval

Women were not always clear on who should engage in cervical cancer screening, who is exempt from it, and when it may be stopped. Opinions about these issues reflected women’s personal understandings of risk rather than evidence-based guidelines.191,223,224,243,245,249 Several authors noted a gap between beliefs about optimal screening intervals and personal practice about engaging in screening,243 reinforcing the overall conclusion that knowledge and beliefs are not the most important determinants of screening.

Regarding the onset, cessation, and frequency of screening, knowledge gaps about the risk and nature of HPV as an STI influenced women’s thoughts on when and how often screening should occur. For instance, explanations about optimal cervical cancer screening frequency were often explained in reference to sexual activity and relationship status (i.e., monogamy). Many women objected to screening programs beginning for women in their mid-twenties because it did not coincide with the age of onset of sexual activity in their communities.176,191,243,247,249,267 Other triggers for screening to begin were the onset of menses or upon reaching a certain age (16 to 20 years).243,249

Opinions on optimal frequency ranged from six months to five years,176,191,223,243,245,247,249,254,267 but many women relied on the “heuristic that all screening is good and thus that more screening is better screening” (p.30).243 Any change in the frequency or duration of screening was met with hesitance about the health implications, and skepticism about whether the change was for financial reasons, or truly in women’s best interest.249

HPV-Specific Factor 1: Attitudes and Beliefs Concerning HPV

Women expressed various attitudes and beliefs about HPV. In particular, women discussed their perceptions of the association between HPV and cervical cancer. Although most women were unaware or uncertain of the link, those that were aware associated fatalistic beliefs with a HPV diagnosis. Moreover, the majority of women experience and perceive a stigma associated with the STI dimension of HPV, which significantly influence women’s screening practices. To remediate these concerns, women require knowledge about HPV prevention and transmission.

The Link Between HPV and Cancer

For women, understanding the relationship between HPV and cancer was essential for understanding their personal level of risk. Several studies demonstrated that without specific education, few women consider HPV to be a risk factor for cervical cancer.184,216,228,238,252 Those who were aware of the relationship between HPV and cervical cancer tended to overestimate the causal relationship and equate a diagnosis of HPV with an inevitable diagnosis of cancer and the strong possibility of death from that cancer.238,240,245,251,252,280,194,232,237,256 Most studies reported that women were uncertain of the link between HPV and cervical cancer,167,173,176,177,204,207,214,217,232,237239,243,245,248,250252,256,263,281 which led women to feel confused about the risk factors, prevention strategies, treatment approaches, and meaning of test results.176,177,186,214,230,243,249,251,257,263,271,280,281 This is significant because, as previously outlined, these can be key motivating factors that encourage participation in cervical cancer screening.

HPV as a Sexually Transmitted Infection

The majority of studies in this review identified a stigma associated with sexual transmission of HPV.213,221,228,237,250,280,282 For example, women felt fear and embarrassment from the stigma associated with HPV, especially when disclosing their HPV-positive status to a partner, family, or community.214,237,238,280 However, some women were not discouraged by this stigma to pursue screening,214 and did not attribute shame or moral judgment concerning sexuality to those who engaged in screening.239 Interestingly, women who were unaware of the sexually transmissible nature of HPV and believed that STIs were an inevitable part of sexual activity, as well as those who internalized the high prevalence of HPV, did not feel a stigma associated with a diagnosis of HPV.237,280,282

Women in several studies exhibited knowledge gaps about the purpose of HPV testing,166,169,188,228,235,245,252,257,262 and commonly held the misconception that Pap tests screened for multiple STIs.203,228,235,245 Women were concerned about acquiring knowledge about HPV as an STI, mainly related to the risk factors and prevention of HPV transmission.166,176,177,184,214,216,238,239,250,251,256,262,263,280282 Notably, some women felt that men were the focal point of HPV transmission, especially those who were not circumcised.166,184,221,250,256

HPV-Specific Factor 2: The Screening Process

This section discusses women’s concerns associated with different screening modalities. A comparison is made between HPV testing and Pap testing on the basis of the stigma associated with STIs. Following this is a discussion on how women perceive the accuracy of screening in relation to their personal emotions and the logistical challenges of seeking it. Finally, this section ends with a discussion on self-sampling by contrasting two positions. While some women expressed that self-sampling tests could overcome the physical and emotional discomfort associated with screening and some logistical barriers, other women were concerned about the accuracy of self-collection technology and were more confident in physician-administered screening.

HPV Testing Versus Papanicolaou Testing

Some women may prefer the Pap test over HPV testing because it seems to avoid the stigma associated with contracting an STI. This preference is not applicable to women who do not experience this stigma. Participants in McCaffrey280 and Brown214 expressed a difference on the issue of preference between HPV testing and Pap testing. Whereas McCaffrey’s280 participants were reluctant to choose HPV testing because of the stigma of promiscuity and infidelity associated with a STI diagnosis, Brown’s214 participants preferred HPV testing because the results were perceived to be more definitive, and actionable concerning sexual transmission. These understandings may be due to differences in cultural values and beliefs between groups of women, or the specific information provided in the context of the research study.214

Women expressed concern about whether undergoing HPV testing would result in undue worry given the lack of treatments and strategies to prevent HPV transmission.190,237,238 Some women wondered if HPV could be detected through serum screening to avoid the embarrassment and discomfort of the procedure.176,184 In one study, women strongly preferred traditional cytology tests. HPV testing was described as most acceptable if offered as part of triage for low-grade abnormal cytology results.237 Women who characterized themselves as proactive about preventive health were more comfortable with HPV testing as a population-based screening modality.218,237

Accuracy of Screening

The perceived accuracy of screening influenced women’s testing preferences, although the interpretation of accuracy may vary depending on their level of understanding and knowledge about HPV and Pap testing. Women expressed concerns about repeat screening visits to the clinic, and perceived that this would be lessened if HPV testing was the primary cervical cancer screening modality.174,182,184,214,271 Moreover, women in one study recounted their habits of declining repeat Pap testing after receiving abnormal cytology results because it prevented the anxiety associated with waiting for test results, and the need for multiple, inconvenient visits to the physician; the option of using the original specimen for adjunctive HPV testing was appealing to these women.214 However, women who were comfortable with Pap testing were reluctant to abandon a screening method they accepted and perceived to be highly effective.218,237,249

Self-Sampling

Several studies explored women’s perceptions of HPV self-sampling. All compared HPV self-sampling with women’s previous experiences, typically HCP-performed Pap smears. In the majority of studies, women expressed mixed feelings. Some preferred the convenience of participating in self-screening due to its privacy and protection from the stigma associated with HPV, whereas others preferred the accuracy of an HCP completing a Pap test.174,177,183,184,186,190,207,208,218,221,238,271,278

Women who preferred self-sampling over other screening modalities emphasized its ability to overcome the psychological and logistical barriers associated with screening. In particular, self-sampling provided increased convenience, anonymity, and comfort; reduced the time, pain, and embarrassment associated with screening; obviated the stigma attributed to HPV as STI testing; simplified the testing process; did not require childcare; and assisted in avoiding the challenge of accessing a complicated health care system.177,183,184,186,190,207,208,221,238,271,278 Self-sampling could ease many of the physical, emotional, and logistical discomforts of a cervical cell smear, and provide a more accessible screening option for underscreened women.190,208,218

Some women expressed a need to learn more about HPV testing and self-collection before feeling confident enough to use self-sampling technology.184,208,221 Other women preferred to delegate sample collection to their HCPs. The choice between HPV self-sampling and HCP-facilitated Pap smear collection was fuelled by perceptions of the accuracy and reliability of self-collected samples, fear of not performing the self-collection properly, contamination and infection, limited awareness of self-sampling among marginalized women, forgetfulness, the lack of acceptance in the health care system, more comfort with HCP-collected samples, undue worry over mailing self-test devices and collected samples, and pain and discomfort associated with self-collection procedures.174,177,183,184,186,207,208,218,221,238,271,278 Women in one study remarked that self-sampling would be more accurate and beneficial than Pap tests because it would not be rushed, would enable women to learn about their bodies, empower them to take control of their health, and provide an avenue to familiarize themselves with their genitalia.271 In relation to cost, women disagreed on the acceptability of costs associated with self-sampling kits, with some American and Canadian women finding the added cost unacceptable183,207,271 and other Canadians judging it to be acceptable, using the analogy of paying for the convenience of a home pregnancy test.271

Another emerging theme was the need for a compromise between self-sampling and clinician-administered testing by providing the option for self-sampling at the doctor’s office.221,271 The second option eased the concerns around accurately completing the test, prompted regular screening, and provided easy access to an HCP.221,271 Women also suggested that the self-collection of samples could serve as a reminder for screening deadlines, and encourage collaboration between women and their HCPs in the uptake and maintenance of cervical cancer screening.271 Women discussed the necessity of educational materials and detailed instructions for self-sampling kits,183,207,221,278 which included step-by-step diagrams, more information about sample storage, and the recommended actions after sample collection.207,278

In a study of women and clinician views of self-sampling, the clinicians mentioned a concern that women with physical limitations or dexterity challenges may not be able to perform a self-sample; this concern was not mentioned by any of the women participants.207

Summary of Results

This review aimed to describe women’s experiences with cervical cancer screening and their resultant perspectives on barriers, facilitators, and preferences for the same. Given the relatively small qualitative literature on HPV screening, we included factors relevant to other modalities of cervical cancer screening that are transferable or relevant to the policy decision of replacing Pap testing with HPV testing.

Some of the strongest patient preferences will not be affected by a change in screening modality from Pap smear to HPV. For example, both require a cervical cell smear, and therefore the potential for embarrassment, pain, and logistical inconvenience of that procedure is unchanged. There is a reasonable body of literature on self-sampling strategies for HPV testing that indicates that it may be widely, but not universally, accepted. The opportunity to choose self-sampling may encourage participation from women who would otherwise find the barriers of having a clinician take cervical cells to be a disincentive to screening participation. The importance of the relationship between patient and HCP will also continue to be important. Sensitive, clear communication from the HCP that emphasizes the importance of cervical cancer screening is likely to improve participation.

Our review outlines a number of HPV testing–specific factors that may impact women’s preferences and participation. Few women understood the link between HPV and cervical cancer, which resulted in misunderstandings about the nature and importance of HPV testing. A lack of understanding of this link is also related to the way that women assessed their personal risk of cervical cancer in relation to their sexual activities. As demonstrated by our review, women who judge themselves to be at low risk of cervical cancer are less likely to participate in cervical cancer screening; when HPV is understood as an STI, many women understand their risk to be related to having multiple male sexual partners. As a result of this misunderstanding, many women may underestimate their personal risk and decline to participate in screening. If Pap cytology is replaced by HPV testing as the primary cervical cancer screening test in Canada, patient education that focuses on the etiology and risk factors of cervical cancer may improve participation rates.

From a clinical perspective, perceptions of the sensitivity and specificity of HPV testing compared with Pap smear is notable. Women did not often discuss perceptions of test accuracy, potentially indicating that women may not be aware of the clinical evidence informing the change in cervical cancer screening modalities.214 However, several studies document women’s preferences for a screening modality, which was less likely to require return visits for further testing.182,184,214,271

Our review is highly concordant with a recent SR and synthesis of primary qualitative research on women’s perceptions and experiences of cervical cancer screening. Chorley et al. emphasized two primary themes: “should I go for screening” “and screening is a big deal.”283 The first theme, “should I go for screening” describes women’s considerations of the relevance and value of cervical cancer screening. Chorley’s description of this theme is highly resonant with our factor of how women assess their personal risk, with a discussion of women’s understandings of the etiology of cervical cancer balanced against their assessment of their familial and behavioural risk factors. Both our review and Chorley’s emphasize women’s assessment of their risk of cervical cancer as related to their sexual behaviour, family history, and current health state. Women’s perceptions of the value of screening were related to reassurance of health after a negative screening result was received. As in our review, Chorley et al. noted some misunderstandings of the purpose of screening, with many women describing cervical cancer screening as a test for infections or a reproductive check-up. Chorley’s review also found a minority group of women who were skeptical of organized screening programs and the beneficence of physicians who offered screening.

The second major theme of Chorley’s review was “screening is a big deal.” In this theme they discuss the physical and emotional consequences of screening. Similar findings across both reviews were the anxiety and distress caused both by the physical procedure and the possibility that cancer may be diagnosed. Embarrassment, shame, and vulnerability are strong themes in both reviews. Both reviews discussed the potential of community stigma related to screening participation and sexual activity, and practical (logistical) barriers to screening participation. Chorley briefly mentions that “for some, screening was considered harmful because it could lead to further investigation or unnecessary treatment” (p.166). They offer no citation for this statement, so it is not possible to trace this back to particular studies included in their review. Under the guidance of clinical experts, we were alert to themes of overdiagnosis in our literature, but found only very minor mentions in one or two papers. Female sample takers and clear, sensitive communication from HCPs with whom they have a trusting relationship are mentioned by both reviews as strong facilitators of screening.

Copyright © 2019 Canadian Agency for Drugs and Technologies in Health.

The copyright and other intellectual property rights in this document are owned by CADTH and its licensors. These rights are protected by the Canadian Copyright Act and other national and international laws and agreements. Users are permitted to make copies of this document for non-commercial purposes only, provided it is not modified when reproduced and appropriate credit is given to CADTH and its licensors.

Except where otherwise noted, this work is distributed under the terms of a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International licence (CC BY-NC-ND), a copy of which is available at http://creativecommons.org/licenses/by-nc-nd/4.0/

Bookshelf ID: NBK543091

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