Publications

Self-administered versus provided-directed sampling in the Anishinaabek Cervical Cancer Screening Study (ACCSS): a qualitative investigation with Canadian First Nations women
Zehbe I, Wakewich P, King AD, Morrisseau K, Tuck C
Abstract
Background:While (Pap)anicolaou screening has helped to decrease cervical cancer incidence in Canada, First Nations women continue to have a higher burden and mortality relative to mainstream populations. Many First Nations women may feel uncomfortable with the invasiveness of this test, contributing to this statistic. Implemented from 2009 to 2015 in 10 Northwest Ontario First Nations communities, the Anishinaabek Cervical Cancer Screening Study (ACCSS) uniquely addressed this Indigenous health inequity through a mixed methods approach.
Objectives:Our goal was to offer an alternative test which the women could do themselves: human papillomavirus (HPV) testing based on self-sampling. We investigated whether First Nations women preferred HPV self-sampling over healthcare provider (HCP)-administered Pap screening.
Methods: Participatory action researchinformed by the ethical space concept has guided all stages of the ACCSS. We conducted qualitative interviews with 16 HCPs and 8 focus group discussions with 69 female community members followed by a cluster-randomised controlled trial (RCT). Here, we draw on the qualitative field data and an end-of-study community update gathering to disseminate and contextualise research findings. Informant data were evaluated using thematic analysis.
Results:We discuss factors influencing participants' strong preference for HPV self-sampling over physician-conducted Pap screening. Key arguments included enhanced accessibility and more personal control, less physical and emotional discomfort and fewer concerns regarding privacy of test results. For future implementation of HPV self-sampling, study participants emphasised the need for more culturally sensitive education addressed to community members of all genders, starting at school, clarifying that HPV causes cervical cancer. Further, HPV infection should be de-stigmatised by accentuating that it affects men and women alike.
Conclusion: Here we show that self-sampling in conjunction with community engagement and culturally sensitive education and could be a viable option for underscreened Canadian First Nations women. These informant data echo our previous RCT results.
Community-randomised controlled trial embedded in the Anishinaabek Cervical Cancer Screening Study: Human papillomavirus self-sampling versus Papanicolaou cyotlogy
Zehbe I, Jackson R, Wood B, Weaver B, Escott N, Severini A, Karjden M, Bishop L, Morrisseau K, Ogilivie G, Burchell AN, Little J
Abstract
Objectives: The incidence of cervical cancer is up to 20-fold higher among First Nations women in Canada than the general population, probably due to lower participation in screening. Offering human papillomavirus (HPV) self-sampling in place of Papanicolaou (Pap) testing may eventually increase screening participation and reduce cervical cancer rates in this population.
Design: A community-randomised controlled screening trial
Setting: First Nations communities in Northwestern Ontario, Canada
Participants: Women aged between 25 and 69, living in Robinson Superior Treaty First Nations. The community was the unit of randomisation.​
Interventions:Women were asked to complete a questionnaire and have screening by HPV self-sampling (arm A) or Pap testing (arm B).
Primary Outcome Measures: The number of women who participated in cervical screening.
Randomisation: Community clusters were randomised to include approximately equivalent numbers of women in each arm.
Results: 6 communities were randomised to arm A and 5 to arm B. One community withdrew, leaving 5 communities in each group (834 eligible women). Participation was <25%. Using clustered intention-to-treat (ITT) analysis, initial and cumulative averaged uptakes in arm A were 1.4-fold (20% vs 14.3%, p=0.628) and 1.3-fold (20.6% vs 16%, p=0.694) higher compared to arm B, respectively. Corresponding per protocol (PP) analysis indicates 2.2-fold (22.9% vs 10.6%, p=0.305) and 1.6-fold (22.9% vs 14.1%, p=0.448) higher uptakes in arm A compared to arm B. Screening uptake varied between communities (range 0-62.1%). Among women who completed a questionnaire (18.3% in arm A, 21.7% in arm B), the screening uptake was 1.8-fold (ITT; p=0.1132) or 3-fold (PP; p<0.01) higher in arm A versus arm B.
Conclusions: Pap and HPV self-sampling were compared in a marginalised, Canadian population. Results indicated a preference for self-sampling. More research on how to reach underscreened Indigenous women is necessary.
Women aged between 25 and 69, living in Robinson Superior Treaty First Nations. The community was the unit of randomisation.
Engaging Canadian First Nations Women in Cervical Screening through Education
Zehbe I, Wakewich P, Wood B, Sameshima P, Banning Y, Little J, and on behalf of the ACCSS group. Engaging Canadian First Nations Women in Cervical Screening through Education. International Journal of Health Promotion and Education. 
Abstract
Recognition of the need to decrease cervical cancer rates in Indigenous populations has been ongoing - yet few successful interventions have been reported. In addition, literature addressing the challenges and barriers associated with designing screening programs aimed to specifically reach Indigenous women is limited. Here, we report findings from a mixed methods cervical cancer research project conducted in partnership with 10 First Nations communities in Northwest Ontario, Canada. Individual interviews with community health professionals (the majority of whom identified as First Nations) stressed that awareness of cervical screening benefits is lacking. In contrast, focus group participants (women with no formal health education) emphasized the desire to learn more about the science of human papillomavirus (HPV), and that a positive HPV or abnormal Papanicolaou test need not mean a woman will undoubtedly develop cervical cancer. Both the health professionals and the focus group participants highlighted that sexual health education must start early, in schools, preferably before girls are sexually active and that it has to continue throughout life to create a screening culture with a focus on women’s wellbeing. Health professionals elaborated mainly on special events for community women whereas focus group participants also recognized the need to include community men in health education particularly for de-stigmatizing the sexually-transmitted HPV infection.

​This article is available upon request at  [email protected]
Growing Well-being through Community Participatory Arts: A Canadian Anishinaabek First Nations Women Cervical Cancer Screening Study
Sameshima P, Wakewich P, Slingerland, D., Morriseau, K. and Zehbe  I. "Growing Well-being through Community Participatory Arts:  A Canadian Anishinaabek First Nations Women Cervical Cancer Screening Study,” In  G. Barton and M. Baguley, eds. The Palgrave Handbook of Global Arts Education. Palgrave Macmillan.
Abstract
This paper describes the successful use of wool felting to enhance cervical cancer screening education for Canadian Indigenous women. The Anishinaabek Cervical Cancer Screening Study (ACCSS) is a large mixed-methods study being conducted by a multi-disciplinary team in collaboration with ten Robinson-Superior Treaty First Nations communities in northwest Ontario, Canada, to address and ultimately improve cervical cancer screening in First Nations women. Despite significant decrease in cervical cancer deaths since the introduction of the Pap(anicolaou) test, Indigenous women in Canada have 2 to 20 times the risk of contracting cervical cancer. This chapter shares the research tenets underpinning this arts integrated work, the outcomes of needle felting in a pilot focus group, and an artist-researcher’s learnings in creating the art pieces “Growing Wellbeing” in conjunction with this research project.

This article is available upon request at  [email protected] ​
Teaching tools to engage Anishinaabek First Nations women in cervical cancer screening: Report of an educational workshop
Zehbe I, Wood B, Wakewich P, Maar M, Escott N, Jumah N, Little J, on behalf of the ACCSS group. (2015). Teaching tools to engage First Nations women in cervical cancer screening: Report of an educational workshop. Health Education Journal.
doi: 10.1177/0017896915580446
Abstract
Objective: To explore educational strategies for engaging First Nations women in Canada to attend cervical
cancer screening.
Design: Within a participatory action research framework, semi-structured interviews with health-care
providers in First Nations communities revealed that education about the value of screening is perceived as
being a key factor to promote cervical cancer screening.
​Setting: To obtain feedback from workshop informants, a 1-day educational workshop was held to identify
appropriate educational intervention strategies, which would be applied in a forthcoming randomised
controlled cervical screening trial.
Methods: Common discussion and discussion groups, which were facilitated by a First Nations workshop
moderator and a note taker.
Results: This workshop helped to strengthen the ethical space dialogue with the First Nations communities
with whom the study team had established research partnerships. The workshop atmosphere was relaxed
and the invited informants decided that an educational health promotion event for community women
needed to be held prior to inviting them to the cervical screening trial. Such an event would provide an
opportunity to communicate the importance of attending regular cervical screening allowing women to
make informed decisions about screening participation. Complementary promotional items, including an
eye-catching pamphlet and storytelling, were also suggested.
Conclusion: The key messages from the events and promotional items can help to de-stigmatise women
who develop a type of cancer that is caused by a sexually transmitted virus that affects both men and women.
Developing and implementing positive health education that respectfully depicts female bodies, sexuality and
health behaviours through a First Nations lens is strongly warranted.
Colonial legacy and the experience of First Nations women in cervical cancer screening: a Canadian multi-community study
Wakewich P, Wood B, Davey C, Laframboise A, Zehbe I, and on behalf of the ACCSS group (2015) Colonial legacy and the experience of First Nations women in cervical cancer screening: a Canadian multi-community study. Critical Public Health. 
doi: 10.1080/09581596.2015.1067671
Abstract
Regular Papanicolaou (Pap) screening has dramatically reduced cervical cancer incidence in Canada since the 1950s. However, Indigenous women’s rates of cervical cancer remain disproportionately high, a factor which is not acknowledged in national media or in educational materials reporting Canada’s new cervical cancer screening guidelines. Here, we present findings from a cervical cancer screening initiative in Northwestern Ontario. Based on participatory action research, we worked with 10 First Nations communities in the Robinson Superior Treaty area to increase awareness of cervical cancer risk, develop culturally sensitive tools for screening and education and test the efficacy of human papillomavirus (HPV) self-sampling as an alternative to Pap cytology. We conducted 16 interviews with health care professionals and 9 focus groups with 69 women from the communities. A central theme for both health care providers (HCPs) and community members was the colonial legacy and its influence on women’s experiences of cervical cancer screening. This was evidenced by a strong sense of body shyness, including shame related to sexuality and sexually transmitted infections, concerns about confidentiality in clinical encounters and distrust or caution around HCPs. Reaffirming women’s traditional caregiving and educational roles, enhancing mother and daughter communication, improving cultural sensitivity in health care and education and adoption of HPV self-sampling to increase women’s privacy and control of the cervical cancer screening experience were endorsed. We argue that education and screening initiatives must reflect the cultural preferences of Indigenous women, empowering them to take control of their experiences of health and body in cervical cancer screening.

This article is available upon request at  [email protected] 
Using community engagement to inform and implement a community-randomized 
controlled trial in the Anishinaabek Cervical Cancer Screening Study.
Wood B, Burchell AN, Escott N, Little J, Maar M, Ogilvie G, Severini A, Bishop L, Morrisseau K, Zehbe I.(2014) Using community engagement to inform and implement a community-randomized controlled trial in the Anishinaabek Cervical Cancer Screening Study. ​Front Oncol. 4:27. doi: 10.3389/fonc.2014.00027. eCollection 2014. PMID:24600584
Abstract
Social, political, and economic factors are directly and indirectly associated with the quality and distribution of health resources across Canada. First Nations (FN) women in particular, endure a disproportionate burden of ill health in contrast to the mainstream population. The complex relationship of health, social, and historical determinants are inherent to increased cervical cancer in FN women. This can be traced back to the colonial oppression suffered by Canadian FN and the social inequalities they have since faced. Screening - the Papinacolaou (Pap) test - and early immunization have rendered cervical cancer almost entirely preventable but despite these options, FN women endure notably higher rates of diagnosis and mortality due to cervical cancer. The Anishinaabek Cervical Cancer Screening Study (ACCSS) is a participatory action research project investigating the factors underlying the cervical cancer burden in FN women. ACCSS is a collaboration with 11 FN communities in Northwest Ontario, Canada, and a multidisciplinary research team from across Canada with expertise in cancer biology, epidemiology, medical anthropology, public health, virology, women's health, and pathology. Interviews with healthcare providers and community members revealed that prior to any formal data collection education must be offered. Consequently, an educational component was integrated into the existing quantitative design of the study: a two-armed, community-randomized trial that compares the uptake of two different cervical screening modalities. In ACCSS, the Research Team integrates community engagement and the flexible nature of participatory research with the scientific rigor of a randomized controlled trial. ACCSS findings will inform culturally appropriate screening strategies, aiming to reduce the disproportionate burden of cervical disease in concert with priorities of the partner FN communities.
Strategies for Increasing Cervical Cancer Screening Amongst First Nations Communities in Northwest Ontario,Canada.
Maar M, Wakewich P, Wood B, Severini A, Little J, Burchell AN, Ogilvie G, Zehbe I.(2014) Strategies for Increasing Cervical Cancer Screening Amongst First Nations Communities in Northwest Ontario, Canada. Health Care Women Int. 37(4):478-95. doi: 10.1080/07399332.2014.959168. Epub 2014 Nov 24. PMID:25375661
Abstract
The high burden of cervical cancer in Indigenous populations worldwide is due to underscreening and inadequate follow-up. Using qualitative, participatory action research, we interviewed health care staff to identify ways to increase screening recruitment in First Nations communities in Northwest Ontario, Canada. Our findings suggest the value of a multilevel social-ecological model to promote behavioral changes at the community, health care service and stakeholder, and decision-maker level. Participants emphasized the central role of First Nations women as nurturers of life and for the well-being of their family members. They stressed the importance of building awareness and motivation for cervical cancer screening through various activities including continuous education, hosting screening events specifically for women, improving the attitude and service of health care providers, and promoting screening tools and policies that complement and are respectful of First Nations women.
A qualitative study of provider perspectives of structural barriers to cervical cancer
screening among First Nations women.
Maar M, Burchell A, Little J, Ogilvie G, Severini A, Yang JM, Zehbe I. (2013) A qualitative study of provider perspectives of structural barriers to cervical cancer screening among First Nations women. Womens Health Issues. 23(5):e319-25. doi: 10.1016/j.whi.2013.06.005. PMID:23993479
Abstract
Objective: In Canada, opportunistic screening programs have successfully reduced mortality from cervical cancer; however, minority or disadvantaged groups, as well as women in northern and rural areas, are inadequately recruited by this approach. Hence, we set out to examine the structural barriers that prevent First Nations women's participation in cervical cancer screening.
Methods: Using a participatory action research approach and semistructured interview guides, we conducted in-depth interviews with 18 experienced health care professionals, 12 of whom were also community members. These individuals included nurses, nurse practitioners, community health representatives, social workers and physicians who provide care to women in our First Nations partner communities. In the current report, we explored perceived barriers to cervical cancer screening through the lens of service providers.
Results: Structural barriers to cervical cancer screening for First Nations women included shortage of appropriate health care providers, lack of a recall-based screening system, geographic and transportation barriers; health literacy and socioeconomic inequalities, generational effects, and the colonial legacy.
Conclusion: Existing, opportunistic cervical cancer screening programs do not perform well for First Nations women who experience significant screening-related health inequalities that are largely influenced by structural barriers. Sustainable screening interventions in First Nations communities require approaches that resolve these structural barriers, explore new ways of screening, and provide education for both women and health care providers. Many of the structural barriers are rooted in colonial history. Given the negative impact of the consequences of colonization on indigenous women worldwide, many of our findings strongly resonate with marginalized populations in other countries.
 
Ethical Space for a Sensitive Research Topic: Engaging First Nations Women in the Development of Culturally Safe Human Papillomavirus Screening
Zehbe I, Maar M, Nawegahbow A, Berst K, Pintar J. (2012) Ethical Space for a Sensitive Research Topic: Engaging Fist Nations Women in the Development of Culturally Safe Human Papillomavirus Screening. Journal of Aboriginal Health. 
Abstract
Human papillomavirus (HPV) is a sexually transmitted infection (STI) and the main risk factor for cervical cancer. Cervical cancer is highly preventable with regular screening, especially when using HPV testing. In Canada, an up to 20-fold higher rate of this cancer has been reported in First Nations women compared to the mainstream population, possibly associated with under-screening, barriers to follow-up treatment, and a pervasive lack of access to culturally safe screening services. As a foundation for the development of culturally safe screening methods in First Nations communities in northwest Ontario, we have developed a participatory action research approach based on respectful and meaningful collaboration with First Nations women, community health care providers, and community leaders. Being mindful of the schism that exists between Western public health approaches to cervical cancer screening and First Nations women’s experiences thereof, we adopted Ermine’s interpretation of ethical space to initiate dialogues with First Nations communities on this sensitive topic. We used an iterative approach to continuously widen the ethical space of  engagement through several cycles of increasing dialogue with First Nations stakeholders. This approach resulted in a rich exchange of knowledge between community stakeholders and our research team, leading to the development of a shared plan for First Nations HPV research. Because of this successful engagement process, a pilot study in one First Nations community in northwest Ontario has been completed and there is support from ten First Nations communities for a large-scale study involving up to 1,000 women. Ethical space served as the foundation for a meaningful dialogue in this participatory action research approach and can be adapted to fit other research projects in similar settings.
Feasibility of self-sampling and human papillomavirus testing for cervical cancer screening in First Nation women from Northwest Ontario, Canada: a pilot study
Zehbe I, Moeller H, Severini A, Weaver B, Escott N, Bell C, Crawford S, Bannon D, & Pavaalo N. (2011). Feasibility
of self-sampling and human papillomavirus testing for cervical cancer screening in First Nation women from Northwest Ontario, Canada: a pilot study. BMJ Open, 1(1), e000030-e000030.
Abstract
Background: The incidence of cervical cancer is up to sixfold higher among First Nation women in Canada than in
the general population. This is probably due to lower participation rates in cervical cancer prevention programmes.
Objective: To raise screening participation in this underserved population by launching an alternative approach to (Pap)anicolaou testing in a clinic - namely, vaginal self-sampling followed by human papillomavirus (HPV) diagnostics.
Methods: Good relationships were established with a First Nation community of the Northern Superior region in Northwest Ontario, and then 49 community women, aged 25 - 59, were recruited, who provided a vaginal self-sample and answered a questionnaire. Frequency distributions and cross-tabulations were used to summarise the data. Associations between categorical variables were assessed using the chi-square test of association, or the Goodman-Kruskal, if both variables had ordered categories. Self-collected samples were tested for integrity and HPV using optimised molecular biological methods.
Results: The majority of participants (87.2%) were amenable to future HPV screening by self-sampling. This finding was independent of age, educational level and a previous history of abnormal Pap tests. Interestingly, the preferred way to learn about sexual health remained through interaction with healthcare professionals. As defined by the presence of a housekeeping gene, self-sample integrity was high (96%). Using polymerase chain reaction-based Luminex typing, the overall HPV positivity was 28.6% (ie, with either a low- or high-risk type) and 16.3% were infected with a high-risk type such as HPV16.
Conclusion: In this pilot study of First Nation women, self-sampling and HPV testing was well received and self-sample quality was excellent. A larger survey to be conducted in other Northern Superior communities in Northwest Ontario will determine whether this approach could become a viable screening strategy for First Nation women.