Colonial legacy and the experience of First Nations women in cervical cancer screening: a Canadian multi-community study

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 CIHR Author ManuscriptCIHR Author Manuscript CIHR Author Manuscript 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.

Community-randomised controlled trial embedded in the Anishinaabek Cervical Cancer Screening Study: human papillomavirus self-sampling versus Papanicolaou cytology

“…We reasoned that empowering women to take their own samples may help overcome some of the structural and cultural barriers First Nations women face when attending cervical screening 13 —a re-affirmed notion and deemed to be culturally appropriate by our community informants during the qualitative phase of the ACCSS. 17 18 DNA integrity from self-samples was excellent—an important factor to emphasise when promoting this screening method as some women reported being anxious that they were not taking their self-sample correctly. Greater than 95% of the samples could be HPV-tested and typed, confirming our earlier pilot data.…”

Are Health Care Professionals Prepared to Implement Human Papillomavirus Testing? A Review of Psychosocial Determinants of Human Papillomavirus Test Acceptability in Primary Cervical Cancer Screening

“…In total, we retained 32 studies, four used qualitative (23)(24)(25)(26) and 28 used quantitative methodology (2,(16)(17)(18)(19)(20) . Included studies covered HCPs opinions from five continents: Europe (i.e., UK (47) , Germany (38) and Italy (39) ), North America (i.e., Canada (24,26,35) and the US (2, 16-20, 23, 29-31, 34, 36, 40-44, 46) ), Africa (i.e., Cameroon (28) and Nigeria (25) ), Asia (i.e., China (27) , Jordan (45) ,South Korea (33) and Thailand (37) ) and Oceania (i.e., Australia (32) ). Details of each included study can be found in Appendix A.…”

“…Despite a slightly lower sensitivity and specificity in detecting cervical intraepithelial neoplasia (CIN2 and CIN3) of HPV testing on self-samples than of HPV testing on a clinician-taken sample (54,55) , Nelson et al (2017) found that 97% of women found selfsampling to be generally acceptable, 65% would prefer self-sampling over clinician-based sampling for HPV testing and considered self-sampling less embarrassing, respecting privacy and easy to use (56) . In our review, we found that HCPs viewed self-sampling as a facilitator of HPV testing as it alleviates women's concerns about privacy and body discomfort during Pap examination, has the potential to reach women in underserved locations and reduces the burden of women's return to the medical system (23,24) . Strategies to increase HCPs recommendations for self-sampling should take into consideration HCPs worries that self-sampling could be associated with missed opportunities to address other health issues and that women's decreased health literacy represents a barrier to an efficient screening, mostly due to poor quality of the self-collected sample (23,31) .…”

“…While major specialty organizations have included HPV testing in their recommendations for primary cervical cancer screening, the adherence of HCPs to the guidelines is suboptimal. • Concern that cervical cancer could be missed if screening initiation with the HPV test is delayed to 25 y (32) • Belief that women > 30 y would fear that cervical cancer could be missed by extending the co-test screening interval from 1 to 3 years (20) • Concern that increasing screening intervals beyond 1 year with the co-test would put women at increased risk of pre-cancer and cancer (18) • Belief that annual exams and other screening tests could be missed if Pap is not offered and the screening interval after a normal co-test is increased to 3 years (17,20) • Belief that using self-sampling could be associated with missed opportunities to address other health issues (31) • Beliefs that delaying screening debut to 25y and increasing screening intervals are strategies to reduce government costs (32) • Belief that discussing the association between a STI and cervical cancer could have negative emotional effect on women and would be time consuming (36) • Insufficient knowledge of cervical cancer screening guidelines (40) • Age > 40 and > 10 years of practice concerned about women's ability to use self-sampling (31) • Higher HPV and HPV test knowledge (e.g., higher sensitivity of the HPV test in detecting precancerous lesions) (36,39) • Less perceived need of information on cervical cancer screening (39) • Knowledge that the Pap test is not recommended annually (39) • Educational interventions increase acceptability of an interval of 3 years for co-testing (41) • Increased cervical cancer knowledge (e.g., cervical changes in young women are usually low grade and have a high rate of regression) was associated with higher acceptability to start screening at 25y (32) • Respecting guidelines for extended interval screening for the Pap test (i.e., 3 years instead of annually) (30) • Perception that extending the screening interval for co-testing is promoted by professional journals, professional specialty organizations and national health organizations (18) • Use of self-sampling method (24) • Higher acceptability of co-testing at 3 years interval (instead of yearly) in HCPs who consider yearly pelvic examination less useful (30) • Higher acceptability among Asian and Hispanic individuals (46) • Consider screening guidelines valuable/HCPs are influenced by guidelines…”

Cancer incidence, stage at diagnosis and outcomes among Manitoba First Nations people living on and off reserve: a retrospective population-based analysis

“…There are notable difficulties in accessing Papanicolaou screening services among Status First Nations women living on reserve, including poor access to family phys icians, delivery of health care services on reserve by registered nurses who are not trained to provide Papanicolaou screening, and lack of culturally safe, trauma-informed cervical cancer screening services. [33][34][35] These challenges may contribute to lower rates of diagnosis of cervical cancer among Status First Nations women living on reserve.…”