The DD approach was utilized to explore stakeholders’ perspectives on feasible and sustainable strategies for adopting the MM program to increase access to HPV screening among Nigerian WLWH.

DD is generally conducted as a single deliberation conference that includes stakeholders and citizens representing multiple constituencies and perspectives. Because this activity was to be conducted by study collaborators encompassing a new collaboration with a large interdisciplinary and multi-cultural team who were unfamiliar with the DD methods, we elected to conduct an initial deliberation among the research team.

Figure 1 shows the addition of the tier 1 research team deliberation to standard DD methods.

Prior to commencing our research team deliberation, it was incumbent upon our team to acknowledge our positionality. Our research team comprises collaborators from an American university, a Nigerian university, a Nigerian research institute, and a Nigerian non-governmental organization (NGO). As a transnational, interdisciplinary group, we recognize that our varied institutional affiliations, professional roles, and personal identities shape our approach to research and community engagement.

Team members based at a large academic medical center and university in the United States bring expertise in DD, public health policy, gynecology, and behavioral sciences. The American collaborators acknowledge that our positioning within a high-income country and Western academic framework confers privileges that may influence research priorities, access to funding, and the interpretation of data. We remain conscious of the potential for power imbalances in global health collaborations and are committed to practices that promote equity, shared leadership, and local relevance.

Our Nigerian collaborators—clinicians, social scientists, and public health experts—are deeply embedded in the healthcare and sociocultural contexts of the communities we study. Their longstanding work with WLWH, including through the MM program, provides the critical on-the-ground perspective needed to ensure that our research is culturally grounded, ethically sound, and practically feasible. Their contributions were central to adapting the DD framework to the Nigerian context and to guiding community-engaged methodologies that respected local norms and priorities.

We acknowledge the ongoing structural inequities in global health research and therefore, intentionally engaged in a co-learning process, including internal deliberation sessions among the research team, to reflect on our positionalities and collectively shape study design and implementation. Our team aimed to create a research process that was collaborative, respectful, and responsive to community voices, especially those of WLWH, whose lived experiences are central to our study.

In the first 6 months of the funding period, the principal investigators and co-investigators on the project engaged in 24 h of online sessions that mimicked the planned deliberation process to be conducted with community constituencies. The research team deliberation was facilitated by a co-Investigator with expertise in DD (CM) and comprised eight investigators with expertise that included: DD methods, implementation science, CC prevention and treatment, and HIV/AIDS prevention and treatment. The research team deliberation was guided by the overarching question, what adaptations to the Mentor Mother program would be feasible and sustainable in the target settings that could be prioritized by recruited deliberators? We then decided on two more specific deliberation questions driven by areas for which our own research team was not in agreement: Question (1) What is the approach for collecting HPV samples for women who are HIV+ that best balances benefits and challenges? And Question (2) What is the approach for returning results to women who are screened for HPV that best balances the benefits and challenges?

Investigator-led, co-learning presentations were used as expert testimonies to give the research team a shared understanding of the pros and cons of different program adaptations for the sustainability of the adapted MM intervention. Expert testimony topics included: DD methodology, CC and HPV screening, steps involved in self-collection of biological samples, and the MM program. Questions were addressed and discussions initiated among the research team.

After the presentations, researchers identified the pros and cons of different locations for MM’s to educate women and to conduct self-testing. A second deliberation followed a similar process for discussing the role of MM in delivering HPV screening results. Research team members broke into small groups as would be done in a formal deliberation, discussed the pros and cons of possible approaches, came to consensus and presented their rationale for the approach they favored to the larger team for further discussion.

The team deliberations resulted in two options for each of the deliberation questions. For question 1: What is the approach for collecting HPV samples for women who are HIV+ that best balances benefits and challenges? our team developed two options: the first option was for MMs to visit women in their homes to educate and facilitate home-based self-collection and for women to transport their own samples to local clinics for analysis. The second option was for MMs to educate women as a group about CC self-screening and provide screening kits in designated meeting locations with MMs transporting samples back to the laboratory or clinic.

For question 2: What is the approach for returning results to women who are screened for HPV that best balances the benefits and challenges? the first option was for MMs to notify women of normal/negative results with local nurses contacting women who had positive screening results. The second option was to provide MMs with additional training in how to return all results (both positive and negative) to patients. The final deliberation questions and options that were agreed upon after the team deliberation represented areas in which the experts on our research team held disagreements about the best approach for the intervention.

Of the 10 perspectives prioritized in our recruitment rubric, we were able to capture 9 of the perspectives from 21 participants who varied in gender (70% female, 30% male), age, and state (the 8 states in which our study has clinic sites were all represented) as shown in Table 4 above. All 21 invitees responded to the invitation with 19 agreeing to attend and two requesting to send a proxy in their stead. All 21 scheduled participants showed up to day one and day two of the deliberation conference.

All 21 deliberators (100% completion rate) rated their satisfaction with the process to be very high (Table 5). Ratings were particularly high for feeling respected by the group and feeling heard by the facilitator.

Table 6 shows pre- to post-deliberation changes in self-efficacy to explain to community members the concepts covered in the expert testimonies. Confidence (1-low to 5-high) to explain increased for all measures and this increase was statistically significant for 5 of the 9 measures. Increases were highest for deliberators with respect to explaining HPV self-testing to women with HIV, what a “high-risk” result means, and how often women need CC screening. Moreover, there were significant increases in indicators of feeling empowered by the process as indicated by increases in perceptions that “Nigeria’s health policy makers want to hear my opinion about how CC screening should be conducted.”

Adopting a societal perspective was demonstrated when participants shared a perspective that valued the group welfare over their own personal interests. While there were many examples of pros and cons offered during deliberation that focused on the societal perspective, we also noted responses that clearly demonstrated a focus on improving societal welfare over one’s personal views. For example, a participant who was a nurse in the clinics and had previously expressed concerns that nurses were being left out of the study process noted that after the deliberation “What really made me choose option 2 (Mentor mothers returning all results) … is the PMTCT (prevention of mother to child transmission of HIV). If we all remember the PMTCT program, it went really well. We’ve been working with mentor mothers. We’ve been sharing issues and deliberations together… So, I believe these two, as we are working together with the nurses and Mentor mothers will achieve the best.” (group 2, day 2). This statement demonstrates that although the participant was concerned about having her role as a nurse valued, she understood that having MMs return all results to the women was better for patients because of the increased level of trust between patients and MMs. Another nurse very specifically commented on the need for societal perspective during deliberation when she stated “We’re not talking about the material benefit. Let us talk about the benefit of the patient.” (Group 2, day 2) Similarly, in the heat of deliberation on day 2, a nurse changed her vote to support MMs returning all results saying “That we did not pick nurses. If I had that impression, I will vote against profession. Let us vote in the interest of our community, in the interest of public health.” (Group 3, Day 2).

Deliberators came to agreement on the first deliberation question: What is the approach for collecting HPV samples for women who are HIV+ that best balances benefits and challenges? In small group discussions, there was strong consensus that option two, having MMs provide education to WLWH in organized groups and with MMs transporting samples back to the laboratory or clinic. Multiple reasons were given for selecting the community option, including issues of transportation and peer support.

As one participant noted: Why I choose option two is because for the client to say to collect the sample by herself to bring it to the facility. She may tell you she do not have transport to come. Transportation. She will tell you that she do not have transportation to come (Group 1, Day 1).

Another reason given to support the community option was the efficiency of group education. A participant who identified herself as a MM noted: When you are doing one by one, I’ll be repeating myself. But it will be group like this one is saying organized group. Talk about what CC is, how to go about the testing. At least I am going to give them information at the same time. And all the women, if there is going to be a demonstration of how to use the kit. It will be one off and they will understand the reason why we are doing it. It’s a group thing (Group 3, Day 1).

Option two was ultimately selected by all four of the breakout groups. Three of the four groups reached 80% consensus in the first round of voting. The fourth group reached 80% consensus on their second round of voting. In the larger group, 100% consensus was reached in the first round of voting.

Deliberators took longer to come to agreement on the second question: What is the approach for returning results to women who are screened for HPV that best balances the benefits and challenges? With option 1 being return of HrHPV positive results by clinical staff and option 2 being return of all results by MM. Small group discussions did not come to immediate consensus. One participant noted the importance of the trust between patients and Mentor mothers saying: Patients trust Mentor Mothers more than the nurses because they believe that they are the same group. So when a mentor mother counsels a patient, the patient pays more attention than the nurse. They believe that the nurses are just there wearing white. But the mentor mother wears the same shoes as them. So, I believe they trust mentor mothers (Group 2, Day 2).

There was also considerable discussion about option two to train MMs with extra training to return all results (both positive and negative) to patients.

One participant noted that they had concerns about the ability to train MMs to deliver complex results noting: “The cons, what, what I have against, the potential problem is that there may be difficulty with training or learning on the part of the mentor mother.” (Group 4, Day 2).

In contrast, another participant stated: “But the option here says they will be trained. and I feel there’s really nothing rocket science in disclosing, a positive result.” (Group 4, Day 2).

One group came to 80% consensus in the first round of voting; two groups came to consensus on option 2 in two rounds of voting; the final group came to consensus after three rounds of voting. The large group consensus process required three rounds of voting to reach 80% consensus. The first vote showed a score of 38.1% for option 1 and 61.9% for option 2. Similarly, there was no consensus in the second round with option 1 having 23.8%, and option 2 having 76.2%; consensus was not reached until the third round when option 1 got 19% and option 2 got 81%. Overall, the large group voted for option 2 (MMs return all results) with 81% consensus.