Abstract
Human papillomavirus (HPV) self-sampling offers a cervical cancer (CC) screening alternative that can address certain barriers to the Papanicolaou test. As part of a larger community-based participatory project in Nunavik, Northern Québec, we travelled to two communities to gather perspectives from Inuit women and healthcare professionals (HCPs) on CC screening services and the possible implementation of HPV self-sampling. We held 10 group discussions with 28 Inuit women and 10 semi-structured interviews with 20 HCPs. The thematic analysis extracted themes reflecting one barrier and seven facilitators to accessing CC screening and the implementation of HPV self-sampling in Nunavik. Themes included, though not limited to, language and communication in health settings, access to culturally responsive educational resources on CC, and the noninvasive nature of HPV self-sampling. This study may serve to contribute to the co-development of a strategy for implementation that is designed according to the needs and priorities of the communities.
Keywords
Introduction
Cervical cancer is the fourth most common cancer in women worldwide (Society, 2016). Human papillomavirus (HPV) is one of the most common sexually transmitted infections globally, and is the necessary cause of cervical cancer (Walboomers et al., 1999). Routine screening for cervical cancer can, through timely detection of precancerous abnormalities, increase the likelihood of successful treatment and prevention and significantly reduce the risk of mortality (Canadian Cancer Society, 2016). In Canada, the primary screening method is with the Papanicolaou (Pap) test and is performed opportunistically (i.e., there is no organized, recall-based screening program in place to encourage individuals to adhere to time-appropriate screening). To date, the uptake of the Pap test for screening has led to significant reductions in cervical cancer incidence rates (Dickinson et al., 2012). In addition, HPV vaccination has been shown to substantially decrease cervical cancer occurrence. According to the Canadian Cancer Society, Canada has set a goal to completely eliminate cervical cancer by 2040 through improving HPV vaccination rate and transitioning from the traditional Pap test to HPV primary screening for cervical cancer detection (Canadian Cancer Statistics Advisory Committee in collaboration with the Canadian Cancer Society, 2021). Nevertheless, each year, more than 1300 people in Canada are diagnosed with cervical cancer, and over 400 die from the disease (Canadian Partnership Against Cancer). Furthermore, Inuit women living in what is now known as Canada face disproportionately higher rates of cervical cancer incidence and mortality compared to the general Canadian population, with age-standardized rates 2.5 to 3 times higher than the national average and a four times higher death rate (Ahmed et al., 2015; Cerigo et al., 2013; Cerigo et al., 2011; Louchini & Beaupré, 2008; Wakewich et al., 2016). This may be attributable, though not limited to, structural barriers to accessing screening, such as poor cultural responsiveness of services and limited access to medical information, as well as geographic barriers, with many Inuit living in remote communities with limited and inconsistent access to services close to home (Kanatami, 2014; Tratt et al., 2020). It must be noted that these barriers cannot be disentangled from the context of ongoing systemic racism and discrimination against Indigenous peoples, and the colonial structures that continue to perpetuate such barriers. Moreover, previous experiences with the Pap test may also play a role in screening attendance. For example, a survey among 175 Inuit women in Nunavik showed that 37% experienced feelings of embarrassment while having a Pap test, and 49% of women reported feelings of pain at least once (Cerigo et al., 2012).
Given that HPV is the necessary cause of cervical cancer, HPV testing thus offers an effective alternative for cervical cancer screening (Melnikow et al., 2018). Further, HPV testing has superior sensitivity and similar specificity for detection of cervical abnormalities compared with the Pap test (Schiffman et al., 2018; Thomsen et al., 2020). While HPV testing is usually conducted by a healthcare provider, HPV self-sampling is a screening method for which women can collect their own samples (Yeh et al., 2019). Importantly, it has been shown that HPV self-sampling is just as likely to detect high-risk HPV as provider-collected sampling (Cerigo et al. 2012; Tranberg et al., 2018). Furthermore, a previous study with 93 Inuit women in Nunavik reported that 56% preferred HPV self-sampling over provider-collected sampling due to greater privacy and convenience (Cerigo et al. 2012). A previous scoping review identified HPV self-sampling as a potentially effective intervention to address certain barriers to cervical cancer screening in Indigenous groups and ultimately increase time-appropriate screening uptake, particularly among the under- and never-screened (Styffe et al., 2020).
While current screening programs have shown reductions in cervical cancer rates across Canada, such programs have not been developed with careful attention to the priorities and needs of Inuit living in Northern Québec (Canadian Partnership Against Cancer). As part of a larger community-based participatory project aimed at improving cervical cancer screening access and outcomes in Nunavik, Northern Québec, we travelled to two communities to gather perspectives from community members to contribute to a tailored approach for the implementation of HPV self-sampling. This work stems from a 20 year research relationship between the research team and the communities in question, and the two communities were selected based on prior partnerships and collaboration. The following article is based on discussions with Inuit women and interviews with health care providers (HCPs) working in Nunavik regarding their perceptions on current cervical cancer screening services in their communities and the possible implementation of HPV self-sampling as an alternative to the Pap test. For this specific study, we set out to explore the similarities and differences in perceptions of the Inuit women and non-Inuit HCPs we spoke to. By doing this, we may begin to think of ways to move forward in developing a framework for implementation that reconciles multiple perspectives while putting the needs and priorities of the communities first.
The purpose of the present study was to explore how the views of the Inuit women and the HCPs coalesced and diverged. To do this, we drew from the Inuit concept of piliriqatigiiniq (“Working in a collaborative way for the common good”) and the process of co-creating knowledge (Daniel & Behe, 2017; Healey & Tagak, 2014). The Piliriqatigiinniq model for community health research is a holistic, multidisciplinary approach built upon the notion that knowledge generation is relational and anyone can contribute meaningfully to health research as long as there exists a shared goal (Healey & Tagak, 2014). As such, this model acknowledges the importance of Western science models, Inuit Qaujimajatuqangit (“That which Inuit have always known to be true”) (Tagalik, 2010), and other ways of knowing in the co-creation of knowledge provided it contributes towards the common good and the betterment of resources in a way that aligns with, and is guided by, the priorities of communities (Healey & Tagak, 2014).
Methods
Context
Nunavik is located in the vast subarctic and arctic region of Northern Québec and is made up of 14 communities that span the Ungava Bay, Hudson Strait, and Eastern Hudson Bay coasts (Fraser et al., 2021). It is home to more than 13,000 Nunavimmiut, which means people of the land, 90% of whom self-identify as Inuit (Rivet, 2020; Statistics Canada, 2016). Inuit, which translates to “the people” in Inuktitut, is plural; one person is an Inuk. While the official language of the province of Québec is French, over 90% of the population in Nunavik speak Inuktitut (Statistics Canada, 2016). Whereas many elders speak only Inuktitut, most youth speak English or French, while some Nunavimmiut speak all three. In addition, the majority of HCPs working in Nunavik, such as doctors, social workers, and nurses, are non-Inuit and are primarily French speaking (Fraser et al., 2021). Therefore, as Inuktitut, French and English are all spoken in Nunavik, an official policy mandates that health-related information must be made available in all three languages (NRBHSS, 2021; Statistics Canada, 2016). Community populations range from 200 to 2000 people, each housing a local Health and Social Services center providing basic healthcare. Specialized care is not available in smaller communities as baseline services are offered by the nursing staff, and while physicians fly into specific communities periodically for assessments and follow-ups, Nunavimmiut must otherwise fly into one of the two primary health centers in Kuujjuaq or Puvirnituq to access such specialized services. Individuals requiring acute emergency care or further specialized care (e.g., oncology) must be flown down south to Montreal (Fraser et al., 2019). Cervical cancer screening, follow-up and treatment of localized abnormalities are conducted in Nunavik; however, further treatment and management must be performed in Montreal as needed.
Study design
This study is part of a broader community-based participatory research project, Illiap Paanganik Qaujisarniq (“Cervical Screening” in Inuktitut), aiming to tailor cervical cancer screening services for Inuit women of Nunavik. It is led by a non-Inuit principal investigator based in Montreal, Canada, who has formed a longstanding research partnership with community stakeholders. The field research assistants who conducted the discussions and interviews were also non-Inuit, as well as the two research assistants who conducted the data analysis. All the research assistants hold at least a Bachelor’s degree in Science or Social Science, and the principal investigator holds a medical degree specializing in public health and preventive medicine. Our overarching objective is to work closely with communities to co-develop the best strategies for the implementation of HPV self-sampling as an alternative to the Pap test for cervical cancer screening that would be aligned with their needs and priorities. In 2018, we travelled to two Nunavik communities to speak with Inuit women and HCPs regarding their views on current cervical cancer screening services and the possible implementation of HPV self-sampling as an alternative to the Pap test.
Advisory committee
We formed an Advisory Committee to oversee, direct, and ensure cultural congruence of all steps of the study, as per common practice when doing research involving the First Nations, Inuit, and Metis peoples of Canada (Government of Canada, 2018). The Advisory Committee is comprised of stakeholders from the local health center, the Regional Health Board, the regional Saturviit Inuit Women’s Association of Nunavik, and community representatives. It is usually composed of around 6 individuals, but this number has varied throughout the course of the project depending on the availability of members. Out of the stakeholders on the committee, 50% are Inuit. We hold meetings with the Advisory Committee, the frequency of which is highly dependent on the stage of the study, to obtain guidance on study design, themes emerging from analyses, and reflect on next steps. For this study, the committee determined culturally safe ways to approach and engage community members for discussions on cervical cancer screening. The guidance from the Advisory Committee helped to adapt separate approaches to hold discussions with Inuit women and non-Inuit HCPs.
Furthermore, 4 separate meetings were held with Saturviit Inuit Women’s Association of Nunavik, which is composed exclusively of Nunavik Inuit women and is a long-time partner. The Association was already familiar with issues surrounding cervical cancer incidence and screening in Nunavik. Saturviit holds general meetings a few times a year, and asked that we present the progress of the project for all (6–8) women around the table to ask questions, express concerns, and make suggestions on the upcoming steps, directly to the research team. We came to consider these presentations as committees themselves, as Saturviit provides much guidance relevant to Nunavik women’s realities. We believe that these meetings foster a safe space for discussing Nunavik Inuit women’s priorities and concerns between Inuit women and the research team, without the presence of additional non-Inuit healthcare providers and/or health experts. To this day, the contribution of Saturviit remains invaluable; the project would not have been as successful without these meetings, and we can never fully grasp the impact of sponsors like Saturviit on sparking interest, encouraging participation and fostering support to the project.
Participant engagement for discussions and interviews
Two populations were involved in this study on a volunteer and first-come-first-serve basis: local Inuit women and HCPs working in Nunavik. Inuit women were invited to join conversations about cervical cancer screening via word-of-mouth, the local radio station, and the communities’ Facebook page (Tratt et al., 2020). After each session, some women invited others to participate, which allowed for additional sessions to take place. Any Inuit woman from Nunavik aged 25 years and over who was interested in the study and topic was eligible to participate. Similarly, HCPs were recruited on a voluntary basis, after authorization by their managers to participate during their working hours. Any HCP who was available and willing to participate at the time of the interview was deemed eligible.
No monetary compensation was provided to participants. Snacks and refreshments were provided, all participants participated in the discussions based on availability and interest. This approach was discussed and validated by our Advisory Committee.
Data generation
We visited two communities to gather perspectives on cervical cancer screening services and HPV self-sampling. Two types of qualitative data were gathered for this study: conceptual maps obtained through group discussions with Inuit women and semi-structured interviews with HCPs working in Nunavik. Recruitment for both group discussions and semi-structured interviews occurred on a rolling basis and was halted when data saturation was reached (Faulkner & Trotter, 2017; Vasileiou et al., 2018). Three non-Inuit female research assistants facilitated the group discussions and interviews, two of which have previously lived and worked in Nunavik, and one of which was a summer student who was visiting Nunavik for the first time. The two research assistants with previous experience in Nunavik moderated the group discussions with women, while only one of these research assistants moderated the interviews with HCPs along with the summer student.
In discussions with the Inuit women, Fuzzy Cognitive Mapping was used as a tool to help participants unpack and visualize their perceptions on cervical cancer screening and HPV self-sampling as an alternative screening method (Tratt et al., 2020). Fuzzy Cognitive Mapping involves the development of conceptual maps in real time as graphical representations of stakeholder views as discussions unfold (N. Andersson et al., 2017; Neil Andersson & Silver, 2019), and can help to overcome cultural and educational differences (Gray et al., 2012). In our discussions with the women, the maps served as both the generator and product of discussions. Researchers and participants sat together in a circle around a table or on the floor to foster casual conversation and mutual learning (Healey & Tagak, 2014; Hovey et al., 2017; Tratt et al., 2020). Due to several technical reasons, such as vocabulary surrounding cervical cancer and availability, an official translator was not hired for the mapping sessions. Thus, recruitment was limited to Inuit women who could speak English or French. However, in one of the two communities visited, a few of the participating women, following their mapping session, felt so concerned with cervical cancer screening that they went on the local radio to explain the project and invite other women to participate. This is how two elderly Inuit women came to express their desire to participate, despite their age (over 65) and not knowing any English or French. We agreed that they should be included because of the high regard that is held towards elders in Inuit culture, and their opinion was deemed important and relevant for others. The two elderly women suggested that one of the initial participating women, who spoke on the radio, translate for them during the session. The women verbally agreed that this was acceptable and comfortable for them. Therefore, overall, sessions were conducted in English and were translated to Inuktitut with the help of other women for those sessions that included the two aforementioned elderly women. Each session began with an introduction of the project goals and the intended use of the data, as well as medical facts such as the female reproductive system, the link between HPV and cervical cancer, and screening techniques including a demonstration of the self-sampling tool, all with the use of visual aids. Discussions were adapted according to the women’s interest on the topics (Tratt et al., 2020). In other words, the time was taken to ensure that any questions the women had were adequately answered before moving into discussion about HPV self-sampling. A semi-structure interview guide was used (see Appendix A), which was designed to allow for flexibility within discussions in order to remain sensitive to the reality and interest of each participant while adhering to the initial research objectives. Researchers took notes regarding the context and important details that came up in conversations (Tratt et al., 2020). Each discussion lasted for on average 90 minutes, depending on the availability of participants and the level of engagement. The discussions ended when participants felt their questions had been answered and had nothing else to add on the topic. Maps were reviewed and validated with participants at the end of each session to ensure accuracy of the concepts.
Semi-structured interviews with HCPs were held mostly in groups and were convened based on similar job titles. For context, interviews began with an introduction to the project and HPV self-sampling. The interview guide consisted of three open-ended questions that prompted HCPs to reflect on 1) potential facilitators to the implementation of HPV self-sampling, 2) potential barriers to the implementation of HPV self-sampling, and 3) their perceptions on what would be an ideal set of conditions for the integration of the HPV self-sampling method within the health system (see Appendix B). Interviews took place in French and were audio-recorded, lasting between 30 minutes to an hour. Researchers then transcribed the interviews verbatim.
Analysis
Thematic analysis was conducted on both the women’s conceptual maps and HCP interview transcripts by two research assistants (Braun & Clarke, 2006, 2021; Clarke et al., 2015). First, the research assistants familiarized themselves with the data by reading through the interviews and maps 3 times, while making annotations of preliminary thoughts and codes. The maps and transcripts were then co-analyzed by the two research assistants to generate initial codes. These initial codes were then classified as either a barrier or facilitator to cervical cancer screening and HPV self-sampling. Then, for women and HCPs data, codes were organized, collated, and reflected upon to come up with themes that reflect as much as possible the perspectives of the participants on cervical cancer screening services and the potential implementation of HPV self-sampling. Once the themes were constructed, the research assistants went back to the transcripts and traced the decision trail from the initial data. At this point, if themes did not appear consistent or representative of the initial data, codes were discussed and improved, and themes were refined. In addition, if another important piece of information was identified within the data at this stage, a new code was inserted. Every time codes or themes were refined, or a new code was inserted, the final extracted themes were re-discussed and modified or refined accordingly. Throughout the coding process, the research assistants kept an audit trail to document the decisions made, justifications behind why particular codes and themes were named and grouped as such, and other general reflections that arose. Furthermore, emerging themes were brought back and discussed with the Advisory Committee, in order to validate accuracy, direction, and reflection of local reality. As the interviews with HCPs were carried out in French, they were analyzed as such to preserve original context and meaning. The extracted quotes and themes were thereafter translated to English to facilitate subsequent comparison with the women’s themes.
The themes developed from each analysis were then compared for convergence and divergence through the lens of our conceptual framework. Employing the Piliriqatigiinniq framework helped us to think about the ways in which each perspective can contribute towards developing a tailored approach for cervical cancer screening services and the implementation of HPV self-sampling in a way that is guided by the voices and priorities of the communities.
Trustworthiness
Multiple processes were employed to ensure trustworthiness in our study. To evaluate this, we used the trustworthiness criteria established by Lincoln et al. (1985) (Nowell et al., 2017). To ensure credibility of our study, we used the technique of data collection triangulation through the use of multiple data sources (transcripts of semi-structured interviews, fuzzy cognitive mapping sessions, field notes). Transferability of the findings was established through thick descriptions of participants and setting. To achieve dependability, we kept audit trails and provided a clear and transparent outline of the research process.
Ethical considerations
Ethics approval was obtained from the Institutional Review Board (IRB) at McGill University’s Faculty of Medicine (A06-E46-18B). For both group discussions and interviews, a statement of consent was read aloud by the researchers, and informed consent was obtained verbally by both women and HCPs. The IRB approved the use of verbal consent for this study in order to overcome language barriers and literacy gaps among the participants, as well as to respect the oral tradition of Inuit culture.
Results
We held 10 discussions with a total of 28 Inuit women aged 26–78 years old, in groups varying from 1 to 6 depending on availability and comfort levels of participants. The median age for Inuit women was 44 years, and the interquartile range was 30.5 years. Moreover, we held 10 semi-structured interviews with 20 HCPs, in groups varying from 1 to 4 participants. The HCPs recruited for this study included nurses, family doctors, social workers, midwives, lab techs, and public health specialists. All HCPs who participated in this study were non-Inuit, primarily French speaking, and had been working in Nunavik for 0.5–29 years. The thematic analyses for both datasets extracted themes that were strongly concordant, reflecting one barrier and seven facilitators to cervical cancer screening and the possible implementation of HPV self-sampling in Nunavik.
Barriers to implementation
A healthcare system founded on Western values and practices
Culture and tradition have previously been established as important social determinants of Inuit women’s health in Canada (G. Healey, 2013). As a result of the ongoing impacts of colonization, the gap between Inuit culture and a healthcare system shaped by Western culture has led to poor health outcomes, as many Inuit lack access to culturally responsive services (Kanatami, 2014; King et al., 2009). This can introduce challenges for Inuit in receiving care across many different services, including cervical cancer screening (i.e., the Pap test). The consequences of a healthcare system shaped by Western culture on accessing cervical cancer screening services is captured in this quotation from an Inuk woman: Imagine, I have experienced sexual violence, I am an Inuk, I am intimidated, this is not my language [English or French], it is a stranger and I have to go for screening. There is a cultural barrier, language barrier. (. . .) Also, non-verbal communication matters. Some things are acceptable in some cultures and in others it is not acceptable. Take the example of visual contact: in my culture it is not respectful to hold visual contact when we speak to someone but in some cultures, you know. (. . .) This will break the barriers [to access] if we know those things.
This resonated with a point that arose in discussion with HCPs: With our conventional ways from the South (. . .) I think we are missing the point completely. (. . .) Inuit, they see us getting all stressed out: Hey, you have a disease! You have this condition! You have to be careful! And this, and that. As if us, White people, we’re more concerned than they are. It’s not because they are not concerned (. . .) I am sure that as long as Inuit are not involved in health programs, we will continue to see high rates of certain diseases. (Public health professional)
As well as a point brought up by a nurse, which points to a systems-level issue: I find that the ways which we deliver care, it’s not adapted to them. (Nurse)
Language differences also emerged as a converging point of concern. Most HCPs in Nunavik speak French as their first language, and are accustomed to working in French-speaking settings. While three languages are spoken in Nunavik, many Inuit, especially elders, are most comfortable in Inuktitut. The following quotation illustrates the difficulties that can ensue: It’s a bit up in the air, where it’s not really clear for them and even us. If you’re used to working in French, I find it hard to explain in English. If you’re not used to making it understandable . . . [there’s] always less of an impact, I would say, in a language where you manage less well than in your first language. (Nurse)
Communication challenges also arise from the common use of medical jargon: It needs to be easily understood by everybody. (. . .) there is also the medical vocabulary that not everyone will know, especially if they didn’t complete school. (Inuk woman)
While translators/interpreters are often key to bridging communication gaps between Inuit patients receiving care delivered by non-Inuit HCPs, confidentiality can be a cause for concern in such small communities: I am not good in English. [But] I don’t trust the translators. (Inuk woman)
Both the Inuit women and the HCPs believed that cultural and language barriers affect access to both appropriate and culturally safe care, as well as impact access to relevant medical information including on HPV, cervical cancer, and cervical cancer screening options.
Facilitators to implementation
Culturally responsive educational and promotional strategies
The Inuit women and HCPs both identified the need for culturally responsive educational initiatives and better access to medical information as key to increasing cervical cancer screening awareness and uptake. The following quotations put it simply: I think that if women are made aware about cervical cancer, they will accept to do it, especially if it’s not necessary to undress, and if they can do it [HPV self-sampling] by themselves. Women simply need to know that it is a serious disease, and more common than we think. (Social worker) I think more women would participate if they were well informed. (Inuk woman)
In terms of content, participants emphasized the need to tailor educational approaches to consider the general population. Avoiding the taboo of sexuality by promoting HPV self-sampling as part of overall health was framed as more culturally attuned and thus more likely to reach women of all ages. This act of “normalizing” was captured in one exchange among social workers (SW): SW1: How is your body doing, how is your heart doing, how is your mind doing? SW2: How is your cervix doing? (laughs) Like that, to normalize a bit and . . . that’s it. SW3: I think that popularizing the information is the very least: the test, what it can prevent. It needs to be really clear, and named in the language of the population. SW1: What facilitators are, is what we named: education, make it be a routine exam, as part of one’s general health . . . An Inuk woman echoed this notion: “There would be less taboos if we talk about it.”
Moreover, some HCPs believed that promotional campaigns could be more successful if they conveyed a message of self-care and stressed that each person is responsible for their health: I like it as a message, this idea of we each have a responsibility for our own health. It can be part of the campaign: Taking care of yourself means doing exams and having access to tools that you can use at home, or at the clinic. But it’s like focusing on the responsibility for my health is important, I am important, so I’ll check this. (Social worker)
In discussing different approaches for increasing access and disseminating information within the community, participants conveyed the importance of incorporating visuals and concise explanations to overcome obstacles associated with culture, language and literacy: Inuit are very visual. It could be for example bright color posters or pamphlets. (Inuk woman) A visual video, short, in Inuktitut, French and English. People could have the chance to choose which language. It needs to be short, informative, and clear. Like max 5 minutes. (Inuk woman)
Forming partnerships and involving the community in the promotion and implementation of human papillomavirus self-sampling
Participants pointed to several strategies for the promotion and implementation of HPV self-sampling. It was emphasized that such strategies would only work to overcome barriers to access if community voices and priorities were incorporated in a meaningful way. Prior research has shown that opting for community-based approaches in the design and implementation of public health programs in Indigenous populations maximizes acceptability, effectiveness, and sustainability of interventions (Israel et al., 1998; Jagosh et al., 2015; Styffe et al., 2020). A public health professional shared this sentiment in the context of Nunavik and the implementation of HPV self-sampling: I am certain that as long as Inuit are not involved in creating the health programs, we’re going to continue to have high rates of certain diseases so . . . that’s it. So facilitator: involve Inuit. Barrier: do not involve Inuit.
Similarly, an Inuk woman reflected on actionable ways to have Inuit women involved in the promotion of HPV, cervical cancer, and HPV self-sampling:
It would be a lot easier having a nurse explain it to Inuit women and then [the women] can take over.
Establishing partnerships with trusted community organizations for education and promotion of cervical cancer screening and HPV self-sampling was expressed by all participants as an effective option for reaching more of the population, particularly in groups. For example: I am sure that forming partnerships with community-based initiatives, sewing groups, women’s groups, family houses, etcetera, in the communities to go and reach women in groups. I think that it would be important to go and knock on those doors to do education and promotion. (Public health professional) The sewing center would be a really good idea. (Inuk woman)
A midwife pointed to the importance of fostering intergenerational education within families. Particularly, this participant mentioned encouraging pregnant women from the community who come for screening to participate in educating other women in their families: With these young women, I would tell them to talk about [cervical cancer] to other women in their families too, because there is not a lot of awareness and it could protect them. Cervical cancer often occurs later in life, so to engage [pregnant women] as vectors of knowledge within the family.
Furthermore, both women and HCPs spoke of mass screening events, described as inviting community women to come for cervical cancer screening clinics and access information on specified dates, as well as using local FM radio to spread the word as it is widely used as a communication tool within communities.
Finally, extending the conversation beyond the direct target population for cervical cancer screening was valued by all participants. For example, involving schools was mentioned as a good way to plant a seed early on: I think it’s just also to start [education on HPV and cervical cancer] at a young age. I don’t think we use the schools and youth enough with regards to that. I do some [sexual health education] here in my office with women, but they didn’t have it before. I would suggest doing important work in secondary schools with social workers, psychoeducators, and the school nurse. (Family planning nurse) Put it out there, inform the people: [it’s] important to have the knowledge; at school, [teach] about the body, HPV, and getting vaccinated. (Inuk woman)
Along the same line, the relevance of including men in the conversation on HPV and cervical cancer to tackle taboo and raise awareness was a common sentiment in discussions with women: “Yes, men need to be concerned, they need to know.”
Privacy and noninvasive nature of human papillomavirus self-sampling method
Nearly all participants believed that a major facilitator to HPV self-sampling is the fact that women can do it themselves without having to undergo a gynecological exam as is required with the Pap test, a procedure perceived by several to be personally and physically invasive: I think more women would come for self-sampling. I know some of my friends feel intimidated by the Pap test. They think it is invasive personally and physically. (. . .) So yeah, I think having the choice to go by themselves, they would definitely go. (Inuk woman) I think just the fact that it is a self-sample, it’s really a facilitator. Pap tests imply not having any symptoms, not having to go to the hospital, but having to undergo a gynecological exam that can be quite invasive. (Public health professional) [With HPV self-sampling], we would not have to open our legs in front of professionals. (Inuk woman) The fact that the woman can do this herself I think it would be quite major as a facilitator. That she doesn't have to have a gynecological exam with a speculum. Particularly for women with a history of sexual abuse which is often a big barrier to gynecological examination and especially with a speculum. (Midwife)
Two midwives shared perspectives regarding the greater accessibility of HPV self-sampling, for both women and HCPs alike, due to its noninvasive nature: Also the integration by all [health] professionals because there are several professionals who are not comfortable doing the Pap test. It’s a stressful test for a lot of professionals who do not do it routinely. Sometimes it’s men, so women don’t show up to their appointment because of that. There is [emotional] discomfort on both sides in [the Pap test] because it’s really invasive. So it would be a big facilitator, accessibility for all professionals. In communities where it is nurses who do it, doing a Pap test, a gynecological exam can be a big big stress. And even to the point where they won’t do much promotion, probably because of [emotional] discomfort. So I think there would maybe be more promotion of [HPV self-sampling] (. . .) by the nurse if it’s just a swab versus having to do a gynecological exam.
Having choices and taking control of one’s own body and health
Concerns arose among some Inuit women around whether opting for HPV self-sampling, and therefore not undergoing a complete gynecological exam, may allow potential abnormalities to go undetected. Thus, the women recognized that while HPV self-sampling has many benefits and will appeal to a greater proportion of the community, certain women, including a few amongst themselves, would still prefer to go for traditional cervical cancer screening (Pap test). For them, what is ultimately most important is having options, as demonstrated by the following quotations from multiple women: I think HPV self-sampling should be available for those who don’t go for a Pap test. The ones that are not shy could go with nurses and those that are shy could go with self-sampling. To make sure I am safe, I’d rather go for a Pap. It’s good to have options.
Similarly, a few participant HCPs also reflected on offering screening choices. A family planning nurse drew on her professional experience in the context of sexually transmitted infections (STI) screening, and the relevance of keeping the complete gynecological exam as a valid option: There are some people who come who are worried. So often they will want a gynecological exam. There are some who come for screening because they are aware, and I offer them, and they don’t want a gynecological exam, and they are very happy that there is the self-sample for some STIs, so they go do the swab, they bring it back and say: “In how much time do I get my results. Perfect, bye.” That I find interesting. I find it interesting that there is this opportunity to choose, not just like: “I only do self-samples.”
Offering choices for patients to choose their preferred cervical cancer screening method, coupled with access to information, is linked to greater patient autonomy and taking control over one’s own health decisions, which women expressed would positively influence their decision to use cervical cancer screening services (Tratt et al., 2020). Some participants emphasized the importance of creating a dynamic where women are more actively engaged in decisions about their health and well-being in medical encounters: Because it’s something that we do in our midwifery practice: offer choices, inform women, it’s part of our philosophy and practice . . . So we’re always going to ask the women: “Do you agree? Do you want that? It’s your baby.” Consent, a lot of people don’t even know that they have the choice (. . .) I think in the long-term, [to give options] promotes this understanding that: they have a choice, it’s their right to their health. It goes a bit in that direction, self-sampling . . . I like! (Midwife) A lot of women felt like somebody was trying to force them. They need to know. We need to inform that they have the right to say yes or no, some won’t understand informed consent. (Inuk woman)
Clear instructions for human papillomavirus self-sampling
While HPV self-sampling was perceived to have many benefits for privacy and accessibility, clear guidelines on how to perform the test were deemed essential for the actualization of these benefits. Some Inuit women disclosed feelings of doubt at their ability to self-collect a valid sample, a general concern with HPV self-sampling also reported in a previous scoping review (Styffe et al., 2020). To alleviate such concerns, participants made the following recommendations for the composition of the HPV self-sampling kit: A small piece of paper that you can bring to the bathroom with you. With step-by-step instructions. (Inuk woman) I wonder if I can have it at home with steps? With steps, and make it visual. (Inuk woman) It really needs to be clear; in fact, I would show them: “You don’t have to insert the whole swab, you insert just this part (gesture)”. Be clear, give a really good explanation but without going too much into detail because us, sometimes, with our big words . . . it’s not necessary. (Family planning nurse) There will always be a nurse who will explain how to do it, and they could give 3 sheets, Inuktitut, English, French, in the inside of the kit (. . .) with images (. . .) and so a [health care worker] will explain how to do it and the women will then have the paper instructions to do it . . . that’s something they can do at home. (Lab tech)
Regardless of the ideal method, the Inuit women made it clear that every patient is unique and will have varying preferences for explanations, whether it be verbal, visual, or both.
Frame human papillomavirus self-sampling as cancer prevention and routine care
Whether to frame HPV self-sampling as a branch of STI screening or cancer prevention was a topic of discussion among many participants. Most, however, felt that associating it with STI screening would reach fewer women due to taboo: I would use cancer because there is a negative connotation with STIs. A person would say I have no STIs, I’m not going. You would lose a person. But if you say cervical cancer screening, it would be for all women. It would be better. Women don’t want to be associated with STIs. (Inuk woman) For Inuit and I am certain everywhere else in Québec, people are a bit uncomfortable with all of that, everything that touches sexuality or sexually transmitted infections. (Public health professional)
As the self-sampling method has already been introduced in parts of Nunavik for STI screening, some HCPs worried that the distinct purpose of the two tests may become a source of confusion. A family planning nurse underlined the importance of a clear explanation regarding the distinction: I think it’s important to offer it [HPV self-sampling] and explain that they’re not related . . . well it’s related but I mean . . . it’s not chlamydia, gonorrhea, it’s important to explain that.
Overall, participants felt that integrating HPV self-sampling as part of existing routine cancer prevention services and overall women’s health would be more impactful in increasing screening uptake: It could be joined (. . .) along the same lines as checking your breasts: we tell women to feel their breasts to check for lumps, it could be a common message, maybe. To say: women’s health in general. (Social worker) Cervical cancer has to do with your overall health. It is part of your body and your body is part of your health. [Make it] part of general health checkup. (Inuk woman)
Expand the responsibility of promoting and offering human papillomavirus self-sampling to a broader range of healthcare professionals to reach more women for screening
The utility of expanding the responsibility of promoting and offering HPV self-sampling by a broad range of professionals was discussed by HCPs. A family planning nurse captured the strategy in a nutshell:
Since it does not require a gynecological exam, it could be several providers who can do it. We would have to see whether it absolutely needs to be a nurse, it could sometimes be other health providers given that there are many opportunities: midwives, nurses; there are providers who more often see women, young women, young mothers.
A social worker specified another scenario where more women can be reached: Because the people who don’t access services, maybe they don’t access medical services but maybe they use services like let’s say . . . psychosocial. It’s about educating other service providers.
Discussion
The impacts of colonization have affected Inuit culture and life in many ways. Traditionally, Inuit lived nomadic lifestyles, travelling according to seasons in clans of approximately 30 (Abbott et al., 2003). Up until the 1950s, many Inuit lived in tents in the summer and igloos in the winter, continuing to live off the land according to traditional ways (Fraser et al., 2019). However, in the 1950s and 1960s, with the transition from a nomadic lifestyle onto permanent centralized settlements and forced attendance in government and church mandated residential schools, Inuit faced dismantlement of communities and families, as well as a disruption in the transmission of tradition and culture that guided Inuit for centuries (Pauktuutit Inuit Women of Canada, 2006). While Inuit have demonstrated tremendous strength and resilience despite having undergone drastic changes in the last decades, the intergenerational effects of hardships imposed by colonization persist, and many today face the cohabitation of tradition and modernity (Pauktuutit Inuit Women of Canada, 2006).
This study presents the perspectives of 28 Inuit women and 20 non-Inuit HCPs on cervical cancer screening services available in their communities and potential barriers and facilitators to the implementation of HPV self-sampling as an alternative screening option. The overarching barrier that emerged from conversations with participants was the direct or indirect result of the structural gap existing between a Westernized medical system and Inuit culture. Many participants pointed to certain consequences of this gap as important obstacles to accessing and/or delivering culturally responsive cervical cancer screening services. Means of communication in an intercultural context was a component of this barrier, where many participants expressed concerns with cultural and language differences, the common use of medical jargon by HCPs, and accessing medical information more generally. Seven themes emerged as potential methods for mitigating the aforementioned barrier and facilitating the implementation of HPV self-sampling as an alternative screening option in a sustainable manner. Facilitators included, though were not limited to, increasing access to culturally responsive education and promotional resources and framing HPV self-sampling as part of cancer prevention and general health. Overall, while some discussion with HCPs revolved around logistics and work conditions, the views of Inuit women and HCPs on ways to move forward to improve access to cervical cancer screening for the community at large were mainly convergent. The findings from this article may serve as a basis for thinking about a tailored approach for the implementation of HPV self-sampling and the development of a cervical cancer screening program that aligns with the needs and priorities of the communities. This study is one of the few to provide concrete, stakeholder-driven suggestions to address key gaps in cervical cancer screening services and increase screening coverage in Nunavik.
The findings from this study are largely in line with other published literature across different Indigenous groups (Adcock et al., 2019; Butler et al., 2020; Dodd et al., 2021; Kolahdooz et al., 2014; Maar et al., 2013, 2016; Manderson & Hoban, 2006; Nugus et al., 2018; Whop et al., 2021; Witham et al., 2021). Namely, a common theme that arises across studies is the importance of providing culturally competent care when it comes to cervical cancer screening (Adcock et al., 2019; Butler et al., 2020; Kolahdooz et al., 2014; Witham et al., 2021). This need holds true for other healthcare services as well, as shown in a study exploring traumatic brain injury among women survivors of intimate partner violence within Indigenous populations in Canada, which discusses challenges around the need for culturally safe healthcare practices within Inuit communities (Haag et al., 2019). As with the findings from this study, many studies in the current literature acknowledge the role of the colonial legacy and a health system based on Western models as a root cause of many of the structural barriers to screening, distrust and poor cultural responsiveness of health services for Indigenous groups (Maar et al., 2013; Manderson & Hoban, 2006; Whop et al., 2021). A suggested method that came up in some studies to alleviate issues related to a lack of culturally safe care, at least in part, was the training of healthcare providers to increase cultural awareness and sensitivity (Maar et al., 2013). Along similar lines, a common facilitator that was reflected in this study as well as others was the emphasis on having educational initiatives rooted in the culture of the target population in order to render information on cervical cancer and screening more relevant and accessible (Adcock et al., 2019; Dodd et al., 2021; Maar et al., 2013, 2016; Witham et al., 2021). For example, in a study exploring healthcare provider perspectives of structural barriers to cervical cancer screening across 11 First Nations communities in Northern Ontario, the majority of which were community members themselves, many participants agreed that “education is the biggest thing.” More specifically, the authors point to the importance of education, which they define as encompassing formal education, health literacy, specific knowledge of HPV transmission and cervical cancer prevention, as well as the navigation of health services, all of which contribute to a woman’s decision to engage in cervical cancer screening (Maar et al., 2013). In addition, some studies underlined the role that HPV self-sampling, by virtue of the self-collection method, can play in the potential for women to restore a sense of control and autonomy over their bodies as opposed to the traditional Pap test, potentially increasing screening participation (Adcock et al., 2019; Tratt et al., 2020; Dodd et al., 2021).
HPV self-sampling is an alternative, noninvasive cervical cancer screening technique that has been shown to potentially increase screening coverage in other Indigenous populations (Styffe et al., 2020). A scoping review largely examining the acceptability and feasibility of HPV self-sampling across different Indigenous groups from various geographical areas found that many women identified HPV self-sampling as easy, comfortable, and an opportunity for self-care and increased control over their bodies (Styffe et al., 2020). While these testimonies resonate with many views expressed by the Inuit women we spoke to, a prominent point that arose in our discussions was the importance above all of providing options. In discussions with women, it quickly became apparent that the preference for a self-administered screening method is not universal. Rather, a portion of women expressed a desire to continue having Pap tests performed by a HCP. This phenomenon was also reflected in a previous study in Nunavik, where 56% of Inuit women survey respondents preferred HPV self-sampling while the remainder preferred the Pap test (Cerigo et al., 2012). In light of this, the notion of having options available for cervical cancer screening fosters a dynamic where women can choose based on their own preferences, and decide what is best for themselves. To ensure that cervical cancer screening remains an inclusive process, the existence of these options should be made clear and accessible to the community upon implementation of HPV self-sampling.
It is vital to note that the decision to screen for cervical cancer and make informed decisions about screening options requires an awareness and understanding of the root causes of the disease (i.e., HPV infection) and its risk factors. A study in a population of 175 women in Nunavik found that awareness and knowledge about HPV was generally low, which did not substantially differ from studies evaluating HPV knowledge in non-Inuit and non-Indigenous populations across Canada and other parts of the world (Cerigo et al., 2011). As emphasized by participants in the present study, it nevertheless underlines the need for culturally adapted educational and promotional initiatives on HPV and cervical cancer, which should be made available in concert with the implementation of HPV self-sampling. As shown in the conceptual map produced by Tratt et al., 2020 in collaboration with the same Inuit women, access to information is what enables informed decision-making and consent in the health setting, and is an important determinant for using cervical cancer screening services in the first place (Tratt et al., 2020).
Participants in this study also mentioned that framing HPV self-sampling as a tool for cancer prevention and overall health, instead of STI prevention, would be beneficial for increasing screening uptake. Approaching educational and promotional initiatives from more of a cancer prevention angle may reach more women for screening as it can mitigate issues around STI stigma and confidentiality in smaller, close-knit communities. However, in doing so, one must also consider the broader historical, economic and cultural context. Overall health and well-being are built upon many factors, such as secure and quality housing, mental wellness, access to culturally responsive health and social services, intergenerational communication, and more (Pauktuutit Inuit Women of Canada, 2017). Rapid colonization had and continues to have many consequences, including the disruption of such factors contributing to overall health, and many available services are founded on Western biomedical models of health (Pauktuutit Inuit Women of Canada, 2017). Thus, implementation and promotion of a cervical cancer screening program should adopt a holistic lens to health and wellness by considering the intersection of determinants of Inuit women’s health and be embedded in Inuit ways of knowing (Pauktuutit Inuit Women of Canada, 2017). This implies forming meaningful partnerships with stakeholders to ensure that messaging for cervical cancer is community-led and tailored to Inuit-specific views on health and well-being to maximize the reach of the program (Pauktuutit Inuit Women of Canada, 2017).
This study provides useful insight into a potential framework for implementation of a cervical cancer screening program with HPV self-sampling as an alternative to the Pap test in Nunavik. While steps for implementation are proposed in this article, what lays at the foundation of this work is fostering authentic and trusting partnerships with community stakeholders. This helps to ensure that program development and implementation is guided by the realities and priorities of the community and maximizes lasting benefits for those whom the program is meant to serve. Future research could repeat this exercise with Inuit women and HCPs after implementation of HPV self-sampling in order to determine potential adjustments to the strategy according to community perceptions of its cultural responsiveness, as well as its utility, accessibility and effectiveness. This study has some limitations. First, this study is cross-sectional, and naturally may not be generalizable to all Inuit women or HCPs working in Nunavik. Second, discussion questions were adapted separately for Inuit women and healthcare providers, which may have impacted the content of discussions and therefore the comparability of findings. Third, a non-random, first-come-first-serve sampling approach may have generated a sample of participants who are generally more concerned about the topic, potentially over-representing the efficacy and relevance of implementing such a program, while under-representing certain barriers associated with cervical cancer screening and its implementation. Finally, although emerging themes were presented to the Advisory Committee throughout the data analysis, it cannot be neglected that non-Inuit researchers conducted the data analysis, and results were not shared back with participants.
Conclusions
The views of Inuit women and non-Inuit HCPs regarding cervical cancer screening services and the potential implementation of HPV self-sampling in Nunavik were largely concordant. These findings may serve to contribute to the co-development of a strategy for implementation that is guided by the needs and priorities of the community.
Footnotes
Appendix A
Interview guide for mapping sessions with Inuit women
Reluctance 2. If you were invited to try this technique, would you be comfortable?
Preconceived idea 3. What would make you want to use this technique?
Understanding of the technique 4. What would cause you to not want to use this technique?
Confidentiality
Complexity 5. What information do you need about self-sample testing?
Desired message 6. How would you like the self-sampling technique to be introduced/explained to you?
Level of involvement of professionals 7. How would you like to have access to HPV self-sampling?
Accessibility 8. Where would you like to have access to HPV self-sampling?
Appendix B
Interview guide for semi-structured interviews with healthcare providers 1) Potential facilitators to the implementation of HPV self-sampling 2) Potential barriers to the implementation of HPV self-sampling 3) Perceptions on what would be an ideal set of conditions for the integration of the HPV self-sampling method within the health system
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funded by the Canadian Institutes of Health Research.
