Ethical and Respectful Engagement in Cervical Cancer Screening Research in Rural Ethiopia

Abstract

Background Screenings for cervical cancer are rare in developing countries due to several barriers, the major being convenience and privacy. Thus, there was a need to conduct a study to identify ways to overcome barriers related to cervical screening participation. This rapid ethnographic assessment aimed to explore respectful and ethical engagement with research participants and their communities for a cluster randomized trial that compared different cervical cancer screening strategies at the community level in Ethiopia. Methods This study was conducted in three rural and one urban kebele (administrative unit) of Butajira, Southern Ethiopia, with purposively selected study participants. Two different interview guides were prepared to facilitate focus group discussions and in-depth interviews with community elders, religious leaders, women's representatives, and Ekub or Eder (traditional savings and support system) leaders. All the interviews and discussions were audio-recorded, and the interview guides covered topics related to research participation, decision-making, preferences, and cervical cancer screenings. QCAmap software was used for analysis. Qualitative content analysis was done, and selected quotes are presented to illustrate the themes. Results Some study participants believed women would be willing to participate in research that required self-sampling for HPV testing. Barriers identified were primigravids, fear of pain, and a lack of privacy. If involved in a study, it was assumed that women might expect to receive results, treatment, and education, among other incentives. Most agreed that the women could provide written consent, while few raised some concerns about providing a signature. The decision-makers for women to participate in the study were believed to be herself with her husband’s involvement. The participants preferred health posts for self-sampling and visual inspection with acetic acid (VIA) to be done by female health workers. Conclusions The results of this study emphasize the importance of understanding the perceptions of women regarding screening procedures. We also identified perceived barriers that would hinder women’s participation in research involving cervical cancer screenings, highlighting their expectations, consent, and the husband’s role.