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. 2017 Nov 9;17(1):734.
doi: 10.1186/s12885-017-3723-5.

Barriers to HPV self-sampling and cytology among low-income indigenous women in rural areas of a middle-income setting: a qualitative study

Betania Allen-Leigh  1 , Patricia Uribe-Zúñiga  2 , Leith León-Maldonado  3 , Brandon J Brown  4 , Attila Lörincz  5 , Jorge Salmeron  6   7 , Eduardo Lazcano-Ponce  8
Affiliations

Barriers to HPV self-sampling and cytology among low-income indigenous women in rural areas of a middle-income setting: a qualitative study

Betania Allen-Leigh et al. BMC Cancer. .

Abstract

Background: Data is needed about barriers to self-collection of Human Papillomavirus (HPV) samples and cytology among low-income, disadvantaged women living in rural areas of lower-income countries as these women are at increased risk of cervical cancer mortality.

Methods: Individual interviews (n = 29), focus groups (n = 7, 5-11 participants) and discussion groups (n = 2, 18-25 participants) were organized with women from three indigenous ethnic groups residing in rural areas in Mexico, after they were provided with free, self-sampled HPV tests. These groups are low-income, underserved by healthcare and have historically been on the receiving end of racism and social exclusion. Descriptive, qualitative content analysis was done, including two cycles of coding.

Results: Interview and focus/discussion group data indicate women had limited understanding of HPV's role in cervical cancer etiology. They identified HPV's existence, that cytology detects cervical cancer, the need for regular testing and that cervical cancer is sexually transmitted. Organizational barriers to clinic-based cytology included irregular supplies of disposable speculums, distance to clinics and lack of clear communication by healthcare personnel. Women considered self-collected HPV-testing easy, less embarrassing and less painful than cytology, an opportunity for self-care and most felt they understood how to take a self-sample after a 20-min explanation. Some women feared hurting themselves when taking the self-sample or that they would take the sample incorrectly, which they worried would make the test useless. Attending HPV-testing in groups facilitated use by allowing women to discuss their doubts and fears before doing self-collection of the sample or to ask other women who were the first to do the self-sampling what the experience had been like (whether it hurt and how easy it was). Lack of indoor bathrooms was a barrier to doing HPV self-sampling at home, when those homes were resource-poor (one-room dwellings).

Conclusions: Low-income, indigenous Mexican women residing in rural, underserved areas identified their need for cervical cancer screening but encountered multiple barriers to cytology-based screening. They found a number of advantages of HPV self-sampled tests. Employing self-collected HPV-testing instead of cytology could resolve some but not all gender-related, organizational or technical quality-of-care issues within cervical cancer detection and control programs.

Keywords: Barriers to detection; Cervical cancer; Cytology; HPV test; Low-income; Middle-income nations; Qualitative methodology; Rural residence; Self-sample; Underserved.

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Conflict of interest statement

Ethics approval and consent to participate

The study protocol was reviewed and approved by the Research, Bio-security and Ethics Committees of the National Institute of Public Health of Mexico (The name of the Ethics Committee is Comité de Ética en Investigación, Instituto Nacional de Salud Pública). Verbal informed consent was requested in the local language before participation; verbal consent was used instead of written consent because many of the women in the study population were illiterate. A letter of informed consent, which had been approved by the Ethics Committee, was read to the participants in the local language and contact information for the principal researcher (Eduardo Lazcano-Ponce) and for the President of the Ethics Committee was provided to all participants. Women agreeing to participate could do HPV-testing at home or a local community center and could opt to do only the free HPV test or to also participate in an individual interview, focus group or discussion group. Referrals for free cytology (for diagnostic confirmation) and treatment at the closest Ministry of Health clinic were provided to all women with a positive HPV test.

Consent for publication

Not Applicable

Competing interests

At the time of this study, Dr. Attila Lörincz worked for the Digene Corporation which markets an HPV test and which donated the HPV tests used in this study; likewise, Dr. Patricia Uribe-Zúñiga worked for the National HIV and AIDS Prevention and Control Center (CENSIDA), which funded the fieldwork of this study. However, Drs. Lörincz and Uribe-Zúñiga were not involved in the fieldwork or analysis, only in study design and writing of the manuscript. These institutions did not provide funding for article publication and had no input on the decision to publish, nor did they participate or have a say in how the fieldwork was carried out, in the analysis or in the content of the manuscript. The remaining co-authors do not have any conflicts of interest to disclose.

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