Developing a CBPS Approach for the MSM HIVST Study
Setting the research agenda within existing programs
In 2018, after examining program data that revealed low HIV testing rates among MSM, NASCOP and University of Manitoba initiated discussions between partners on the potential of initiating a CBPS HIVST study among MSM. Kenya has a history of strong leadership among organizations serving MSM, including a national body (G10) that leads research among LGBTI communities. NASCOP, in partnership with UM and PHDA, approached G10 and its partners in Kiambu, Kisumu and Mombasa of which G10 identified three partner CBOs to participate in the project. The CBOs each had extensive experience in program implementation and a large program reach. We developed a formal partnership with each CBO, initially through the exploratory research phase and then through the entire research process from protocol development/research design, data collection, data analysis, and dissemination/translation of findings. We began by setting up a three-month exploratory process to assess the feasibility of the study. Based on the successful completion of the preliminary assessment phase which entailed virtual mapping58 (assessing MSM use of virtual platforms such as geosocial networking and other social networking applications to find sexual partners) and consultations with the community to assess feasibility of partnerships, we negotiated formal, 12-month partnership agreements with clear roles and defined responsibilities for all collaborators at all the levels of the study. After consensus and consultation, UM was given the responsibility of overseeing the evaluation, the CBOs took the role of study implementation, while NASCOP was given the role of policy and advocacy. Point persons from each institution were selected and formed a core team of 16 members for oversight and decision-making. Though leadership roles were clearly divided, supportive roles were also defined. For instance, while UM served as the lead on the evaluation, the CBOs participated in the design of the study, provided direct guidance and support to UM by identifying community researchers (CRs), supported and monitored data collection, supported analysis and interpretation of the data, and used the data for improvement of programs. Similarly, though CBOs led the implementation, UM and NASCOP contributed to the study design by co-designing the intervention design, conducting capacity building on HIVST and modes of distribution, training of CRs in data collection and analysis, and designing a monitoring system. In addition, UM and its local partner PHDA had a representative based in each of the participating counties who then became the point person for project-related discussions and decision-making. Regular updates occurred through monthly report sharing, face-to-face meetings, email updates and more informal approaches. Importantly, UM, PHDA and the CBOs supported NASCOP in the dissemination by sharing study findings in key forums such as the Kenya’s key populations community of experts forum, and advocating with the different county governments to share study findings and organize collaborative activities.
Study Design and Protocol Development
Collaborative strategic planning in central to CBPS. It centers on ensuring all key stakeholders in a study are actively involved including in the design and the development of a project. The process allows for the integration of tacit knowledge and the adaptation of local contexts in the design of projects. In our case, to ensure active participation of the MSM community and all other collaborating partners in the entire research process, a protocol development workshop was organized. The workshop saw all the collaborating partners come together in order to establish the research questions, the rationale of the study project, and strategies that would be relevant in the conduct of the study. As such the aim of the workshop was for each of the collaborating partners including the MSM community to develop a study protocol to evaluate a community-based HIV self-testing delivery strategies on reducing undiagnosed HIV infection, and improving linkage to prevention and treatment services, among men who have sex with men in Kenya.
Baseline Qualitative Exploratory Study
Recruitment and Training of Community Researchers
As part of the ongoing active involvement of the community in the study, the CBOs, in collaboration with the PHDA field coordinators and the qualitative research coordinating team (which included the first, second and the last author), recruited CRs from within their membership who would then be involved in the qualitative data collection and analysis processes throughout the study period. Four CRs from each of the three participating sites were recruited, for a total of twelve CRs. For the baseline qualitative exploratory phase, the CRs, together with their respective community study supervisors, were taken through a participatory training on key principles in research ethics59 and qualitative research methodology by the first, second, and last author. In the same forum, the CRs participated in the framing of the interview questions and development of the data collection tools, including the interview guide and demographic form. In order to have precise questions that could be asked in different local languages across the three participating sites and to troubleshoot for potential points of confusion for participants, the CRs practiced the questions through multiple role-play sessions and refined them accordingly. For example, during the first role play session a CR from Mombasa asked about the impact of bleeding gums on the test. The second author captured this exchange in a fieldnote included below.
While the community researchers practiced using the interview guide with one another, Fatima raised her hand and asked, “What happens if their gums are bleeding and there is blood on the stick?” The coordinating research team initially thought that this would not present a problem as the test is designed to identify antibodies in saliva. However, as we carefully re-read the clinical information on the back of the instructions, we discovered that blood on the test strip can indeed lead to an invalid test. This also raised the question among some community researchers about how to explain to participants that though the test works by identifying antibodies in saliva, HIV cannot be transferred through saliva. [The last author] stopped the role-playing exercise to stress that this would be an instance in which the community researcher has an ethical responsibility to ensure that the participant does not leave with incorrect information. After some discussion, the interview guide was edited to ensure that when the community researcher explains the oral swab, they also explicitly state that HIV is not transmitted through saliva and to remind the participant that they can ask more detailed information from the clinician after the interview process.
Before the CRs began conducting interviews in their respective counties, the first, second and last author together with the PHDA field coordinators visited each of the respective sites where they advised CRs and observed them as they created their own sampling tree (see Figure 1). Using pseudonyms, they listed their potential participants while considering both those enrolled and not enrolled in programs, as well as ensuring representation from different socio-economic backgrounds. Inclusion criteria included men reporting having had sex with another man or transgender woman in the past 12 months, being 18 years or older, and willing to be followed over a period of one year to participate in baseline, midline and endline interviews. Each CR team generated a list of potential participants who met the inclusion criteria from within their own social networks. Peer educators or outreach workers in the CBOs were not eligible to participate in the interviews. Participants were selected to ensure equal age distribution, as well as to account for the experiences of MSM who were enrolled in CBO programs and those who were not. To ensure representation of different socio-sexual networks, CRs also selected participants based on their involvement in sex work and their socio-economic status. Part of this process was captured by the second author in the fieldnote below:
When introducing the concept of sampling to the Mombasa team, [the last author] used the metaphor of cooking rice. “In order to know if it is cooked well you need to taste different spots in the pot. Sampling in research is the same idea,” he explained. We asked the community researchers to start by listing the “different kinds of MSM” in Mombasa. They listed: age, sex work, enrolled [in MSM programming] vs. not enrolled, and “class”. The last author mentioned that this is essentially a conversation about diversity, that while they are all MSM, there are characteristics that make them different.
Conducting the interviews
Between May and August of 2019, the CRs interviewed a total of 72 participants. The interviews explored participants’ perceptions on the HIVST technology, and their opinions on the best strategies CBOs could use to deliver HIVST to the MSM community. With consent from all participants, the interviews were audio recorded, and later translated [when necessary] and transcribed verbatim in English by trained community members. The study procedures were approved by the research and ethics review board at the Kenyatta National Hospital in Kenya and the University of Manitoba, and all participants provided written informed consent.
Participatory Data Analysis
One key principle of CBPS-driven interventions is having communities actively participate in the production of evidence throughout the life course of the intervention. However, more often than not, studies that profess to follow a CBR approach fail to directly include community participation in the data analysis process 60–62. Engaging community members in the analysis and interpretation of research data ensures communities’ perspectives, knowledge, and contributions are authentically included. The process yields rich analytic insight and contextualization that fosters the translation of findings into local community health practice. Local knowledge gained through years of experience and practice as a member of the community – what is referred to as tacit knowledge – is an integral dimension in the interpretation and translation of findings into practice within the local context 63. We therefore undertook a deliberate move to involve the CRs and their CBOs study coordinators in a collaborative analysis process of the qualitative interview data. The team participated in a process of meaning-making that had multiple steps 64,65 .
Training on Thematic Analysis
Under the guidance of a locally-based qualitative research coordinator (the first author) and two senior medical anthropologists (the second and final authors), CRs were taken through a two-day training to learn how to conduct basic thematic analysis from an interpretivist perspective 66. Specifically, using different facilitation skills and simplified visual aids such as videos (https://www.youtube.com/watch?v=phXssQBCDls) and samples of already analyzed transcripts, the team learned about reviewing and familiarization with the transcripts, coding, memo-ing, data interpretation, and composing findings section. Three transcripts from each of the three participating sites were picked for the participatory data analysis exercise.
Familiarization and Coding
To embark on the analysis process, the CR team undertook a deep reading of a set of transcripts in small groups in order to familiarize themselves with the contents of the transcripts. They then provided an overview of the data to the larger research team before returning to their small groups to begin a more detailed analysis of the individual sections of the transcripts. At this stage, the CRs read through the transcripts a second time and took initial notes. For this first step, team members were put in smaller groups composed of both the CRs and study coordinators. The first, second, and final authors supported the groups by listening to the various discussions and asking questions that would be relevant to aid the analysis process. The purposeful grouping in turn allowed for a variety of perspectives to be represented during the research team’s early interaction with the transcripts and ensured a cross-mingling of ideas. For example, one CR from Kisumu directed his small group’s attention to the complex security concerns that the kit posed. A fieldnote captured by the second author details this exchange:
While reviewing a section of the transcript, John turned to [second author] and [fourth author] and said that the interviewer “missed” something. While being probed for their concerns about the HIVST, the participant had briefly alluded to security concerns, expressing the potential for the kit “outing” users as they have become increasingly associated with the [MSM] community. John felt that the CR conducting the interview should have asked for more details about this and explained that several of participants he had interviewed had expressed similar security concerns. As the kits are marketed towards sexual and gender minorities, he worried that the mere presence of the kit might make users vulnerable to blackmail. [The fourth author] explained that the same thing happened when pre-exposure prophylaxis [PrEP] was marketed towards the community, making CBOs serving the community more visible than they had been previously. “Now they know where gay men are and where they access services,” he explained.
During the coding process, the CR teams highlighted salient segments of the transcript and allocated a single word or short phrase to describe the content. The transcripts were printed with wide margins on the right side to create space to write codes on the transcripts.
Code Grouping and Definitions
During the next level of analysis, the small groups listed all the codes (child codes) and identifying related codes that they then grouped together to create parent codes. The parent codes were then presented to and discussed with the entire team. The discussion helped the team to begin to see some commonalities in the data and relationships across the different data sets. The members regrouped into three larger groups representing their three study sites. The CRs and the study coordinators then developed definitions for each parent code. Figure 2 shows a sample of listed codes from one of the groups.
Reconciling Coding Schemes and Composing Findings Sections
Next, the training facilitators reviewed the grouped codes and definitions in order to create a sample guide. The sample included the parent code, the definition of the code, and excerpts from the transcripts. Retaining the same site level groups, members used a laptop to extract excerpts from the three transcripts from their respective sites and assigned them accordingly to the defined parent codes. Each group then selected six parent codes they considered a priority and wrote up summaries bringing out the overall message of each of the parent codes that they would want to convey to program implementers and policy makers. From the combined codes, the team prioritized the following parent codes: 1) attitudes towards HIVST kits, 2) perceived advantages of using HIVST kits, 3) barriers that would impact on use of HIVST kits, 4) HIVST demand creation and advocacy, 5) service delivery approaches, and 6) role of health facilities. To conclude the analysis exercise, the groups exchanged their write-ups for critical review and the feedback provided to each site level group was used to improve the write-up of the findings.
Dissemination of study results
A key feature of CBPS is the dissemination of study findings with community members and the active involvement of the community partners in the process. This is an approach therefore that we embraced in the implementation of our CBPS study. The MSM community were actively involved in the dissemination of study findings that went beyond the ordinary scientific publications as is often the case. We built on both existing and new structures in order to share the findings. For instance, the community was largely involved in the sharing of the findings at the counties and at national level through various forums such as the key populations committees of experts’ forums and other relevant meetings. Also, the community wrote a first authored paper that shared with a wider audience on the efforts the community put to reach the MSM with HIV testing services amid Covid-1967.