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APHA Tabora, Tanzania


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Presentation provides information about community engagement activities associated with study in Tabora, Tanzania.

Presentation provides information about community engagement activities associated with study in Tabora, Tanzania.

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  • Slide 1 (Title Slide): Good afternoon. My name is Dominick Shattuck and my presentation is about an HIV research capacity building project and how this was enabled by incorporating multiple layers of community engagement.
  • Slide 2 (Outline): First, I will briefly discuss the need for HIV prevention sites. Second, I will provide some information about site of this project, Tabora Tanzania. Then, I will present the process we used to build research capacity in Tabora. And finally I will present what we learned through this process.
  • Slide 3 (HIV Prevention Research Sites): There is a growing need for HIV prevention trial sites to test new products (when available). In order to effectively implement an HIV prevention study, it is desired that the site is multi-functional, or as IPM describes it, pluri-potent. Meaning the site is well trained and well equipped. Because of the tremendous investment resources and time, and the high-profile nature of HIV prevention research, it is desired that site leadership has open lines of communication with the stakeholders in their community. We have learned from past experience that failure to develop this communication can have catastrophic effects on trials.
  • Slide 4 (Tabora, Tanzania – Map): As part of a larger initiative, a team of researchers from FHI assessed multiple sites in Africa and Asia for capacity building. One of those was Tabora, Tanzania. Tabora was found to have several characteristics needed for this capacity building initiative, including: a sizable population research experience established community links basic physical infrastructure interest in building their capacity
  • Slide 5 (Tabora, Tanzania – Challenges): As you know, many HIV prevention studies recruit women at higher risk for HIV infection. From our preliminary assessment, we were unsure whether Tabora contained a sizable enough population to support the sample sizes needed for many HIV preventions studies. Also, we were unsure of the community’s understanding of research. And what role stigma would play in future HIV prevention research in Tabora.
  • Slide 6 (Capacity Building Activities in Tabora, Tanzania): To resolve those questions, we decided to implement a cross sectional study addressing the following goals ( read from slide ): To ascertain whether a sizable number of women at higher risk for HIV infection can be recruited. To determine their acceptability of hypothetical HIV prevention studies (longitudinal). To identify HIV risk behaviors in the target population. To enhance links between NIMR-Tabora and the community. To provide additional training and experience to the staff.
  • Slide 7 (Capacity Building Activities in Tabora, Tanzania): To implement this study and build capacity in Tabora, we utilized a layered process that enhanced links in the community and provided more information about women at risk for HIV infection. First, formal and informal interviews were conducted with community stakeholders. Second, modified PLACE methodology was implemented and data was collected from community members about places were individuals meet new sex partners. Third, after an initial wave of participants were enrolled. Respondent Driven Sampling asked those participants to recruit other women to this study (similar to snowball sampling). Our target sample size was 742 women who were over 18, and had multiple sexual partners in the last month.
  • Slide 8 (Community Engagement: Stakeholder Interviews): A series of interviews were arranged by NIMR staff with local community groups and leaders, including: Government officials Bar owners NGOs: Local Tabora NGO Cluster Kitete Regional Hospital & VCT Clinics Health Action Promotion Organization (HAPO) Religious leaders: Anglican Church of Tabora (ACT) These interviews provided an opportunity for us to learn about the community and for the organizations to learn about our study. From these interviews the stakeholders shared their suggestions about implementation and any potential barriers that we may encounter.
  • Slide 9 (Community Engagement: Community Mapping): A modified PLACE methodology was used to identify venues where individuals went to meet new sex partners in Tabora. Through this process informed consent was obtained from participants, information about the study was shared and data collectors could answer questions from the participants. Additionally, data collectors received HIV/AIDS training and were instructed how to direct Community Mapping participants to local HIV and Family Planning resources when requested. By interviewing 500 community informants – 205 unique venues were identified. After identifying venues, 145 venue owners interviewed and data collectors asked for permission to collect additional information from patrons and venue workers. From these efforts 282 men and 500 women were interviewed in venues. This work enabled us to identify the initial seeds for Respondent Drive Sampling.
  • Slide 10 (Community Engagement: Respondent Driven Sampling): Respondent Driven Sampling is a snowball recruiting method that limits the number of potential participants any one participant can recruit. From the venues identified in the Community Mapping activities, 25 women were screened and asked to participate in the study. Each was given an RDS coupon with an identifying ID number. For each seed participant, up to 19 subsequent waves of women entered the study 742 women were enrolled in the study in less than 8 months. Only 33 women arrived at the study center and were identified as ineligible Training study participants to distribute the coupons provided an opportunity to debrief them about the study and its objectives. From the interview transcripts, we learned that this method is preferred by the participants because of its ability to retain high levels of privacy for the women.
  • Slide 11 (Behavioral Survey): To ascertain risk behaviors and acceptability of future HIV prevention trails a behavioral survey was implemented and a systematic sub-sample of participants were recruited for in-depth interviews. Data processing and analyses of these data are in progress.
  • Slide 12 (Tabora is a Potential HIV Prevention Research Site): NIMR Tabora should be considered for future HIV prevention research studies [READ FROM SLIDE] The site is able to effectively recruit a large number of women at higher risk of HIV infection. Preliminary analyses suggest that these women are accepting of future HIV prevention research studies (cohort studies, Microbicide gels, and Chemoprophylaxis). The site has skilled and experienced staff. Generally, the population of Tabora is accepting of research activities. And there is local NGO and governmental support.
  • Slide 13 (Potential Social-Behavioral Barriers to HIV Prevention Research): To effectively implement HIV prevention research in Tabora, study staff will need to consider the social implications of study participation for women. As apparent in this quote, some women may need to hide their participation in any research activities. [READ QUOTE?] Also, study staff should also assist the community to understand the history of the product that is being tested. Informing community leaders and study participants about prior Phase I & II trials may assist in increasing their understanding of the study. Also, clear communication of the risks associated with participation need to be expressed to all stakeholders. [READ QUOTE?]
  • Slide 14 (Potential Social-Behavioral Barriers to HIV Prevention Research): Participants in these activities stated other practical implications to study participation. 77% of the women in this study reported having children. Understandably the practical implication of keeping medication in a “safe” place is a priority. If an HIV prevention product is tested in Tabora, or elsewhere, study staff should work with the target population to provide packaging options that help ensure their children’s safety. Study staff should also consider the stigma associated with participation in their research study. Discussing clinic locations and alternative clinic times, or alternative product packaging may assist women in keeping their participation private.
  • Slide 15 (Mechanisms for Successful Community Engagement in Tabora) NIMR leadership in Tabora is well respected and connected with the community. Discussions were initiated with those stakeholders that had the strongest connection to NIMR. During every interaction the question, “Who would you suggest we speak with about this study?” was asked. From this, new connections were made with individuals we didn’t initially foresee as stakeholders. One of the major successes of this project was the recruitment of such a large sample of women at higher risk for HIV infection. We were able to recruit a hidden population by utilizing a variety of local resources, including the participants themselves.
  • Slide 16 (Next-Steps for Tabora’s HIV Study Preparedness) Researchers working in Tabora should address research misconceptions, particularly of men. Research literacy programs should be developed, implemented and their effect measured in any community where there is an HIV prevention study. HIV prevention studies require laboratory capacity. Although NIMR-Tabora staff are prepared to oversee laboratory activities, substantial development of laboratory facilities are needed. When testing an HIV prevention product, researchers need to be able to identify change in new infections. Unfortunately, there is little information about the incidence or prevalence data for this group of women in Tabora. Local HIV incidence data is needed.
  • Transcript

    • 1. Establishing a Dialogue with Stakeholders to Assess Sexual Practices Among Women at Higher Risk for HIV Infection in Tabora, Tanzania Dominick Shattuck, Kavita Dave-Coombe, Wambura Mwita, Stafford Kibona, Godwin Nkya, Calvin Sindato, John Changalucha, Kathleen M. MacQueen
    • 2. Outline
      • Need for HIV Prevention Sites
      • Site Information & Challenges
      • Framework & Methods Used to Address Challenges
      • Findings:
      • Tabora as a Potential HIV Prevention Site
      • Barriers for Longitudinal Studies
      • Mechanisms for Successful Community Engagement
      • Next-Steps for Further HIV Study Preparedness
    • 3. HIV Prevention Research Sites
      • Increased need for HIV prevention trial sites (AMD, 2008)
        • Test new products (when available)
        • Identify changes in epidemic
      • Sites need to be multi-functional (AVAC)
        • Trained staff
        • Maintained and expanding infrastructure
        • Lack of relationships at multiple levels in the community, government and the media has caused problems in other Microbicide trials
      - NIMR Staff Training, photos by Kavita Coombe
    • 4. Tabora, Tanzania
        • Location: Western Tanzania
        • Pop. ~ 200,000
        • NIMR* Research Center
        • Clinical & Behavioral research experience
        • Community links established
        • Internet & data management capacity
      Tabora *(NIMR) – National Institute for Medical Research in Tanzania
    • 5. Tabora, Tanzania
      • Challenges
        • Limited information on ability to recruit a sizeable sample of women at higher risk for HIV infection (multiple sexual partners)
        • Stigma associated with participating in an HIV research study
        • Low levels of research literacy in the community
    • 6. Capacity Building Activities in Tabora, Tanzania
      • Solution
        • Conduct cross-sectional study
          • To ascertain whether a sizable number of women at higher risk for HIV infection can be recruited
          • To determine their acceptability of hypothetical HIV prevention studies (longitudinal)
          • To identify their HIV risk behaviors among the target population
          • To enhance links between NIMR-Tabora and the community
          • To provide additional training and experience to staff members
    • 7. Capacity Building Activities in Tabora, Tanzania Community Mapping Respondent Driven Sampling Stakeholder Interviews In-Depth Interview Behavioral Survey Dissemination of Findings Capacity Building Process Community Engagement
    • 8. Community Engagement: Stakeholder Interviews
        • Provided opportunity to learn about existing HIV prevention programs and objectives of local organizations
        • Discuss planned research study
        • Identify barriers perceived by stakeholders
      - NIMR Staff Training, photo by Kavita Coombe
    • 9. Community Engagement: Community Mapping
        • Modified PLACE Methodology
          • 500 community informants identified 205 unique venues where individuals meet new sex partners
          • 145 venue owners interviewed
          • 282 men and 500 women interviewed in venues
      - Community Engagement, photo by Shelly Fischer
    • 10. Community Engagement: Respondent Driven Sampling
        • Opportunity to recruit from hidden/hard to reach population
        • An additional debriefing opportunity for participants
        • Participants liked privacy of the RDS method
          • “Because no one will like other people to know that she decided to participate, for example the way you get me that is the good way.”
      - A typical Tabora grocery, photo by Shelly Fischer
    • 11. Behavioral Survey & In-Depth Interviews
        • Areas:
          • Demographic Characteristics
          • Family Planning and Contraceptive Knowledge
          • Family Planning and Contraceptive History
          • Willingness to Participate (Factorial Survey)
          • Projected Adherence
          • Volunteer Counseling & Testing Experience
          • Medical History
          • Sexual Relationship History
          • HIV Prevention Participation Self-efficacy
        • Data processing and analyses are in progress
    • 12. Tabora is a Potential HIV Prevention Research Site
        • Able to effectively recruit large number of women at higher risk of HIV infection
        • Target population accepting of future HIV prevention research studies (cohort, gel, pill)
        • Skilled staff present at NIMR-Tabora
        • General population accepting of research activities
        • Local NGO and governmental support
      - Tabora NGO coordination center, photo by Shelly Fischer
    • 13. Potential Social-Behavioral Barriers for HIV Prevention Research
        • Male misunderstanding of research
          • e.g.; husbands, bar owners
            • “ Most of them [men] will think negatively if women participate [in studies] they [women] can have HIV check up and by doing so the men would not trust them.”
        • Misconceptions regarding pills/gel
          • Rumors regarding the purpose and origin of products
            • “… [the gel] has the aim of killing people, hence reducing the number of populations, as well as destroying the reproductive system.”
      - A typical home in Tabora, photo by Shelly Fischer
    • 14. Potential Social-Behavioral Barriers for HIV Prevention Research (cont.)
        • Concerns regarding pills/gel
          • Keeping products in “safe” place, away from children
            • “I would keep it away from my children and put in a safer place.”
        • Stigma for those women who are participating – Need to keep participation secret
            • “People can say that the ones who use these drugs are already infected.”
      - A typical home in Tabora, photo by Shelly Fischer
    • 15. Mechanisms for Successful Community Engagement in Tabora
        • Capitalize on existing relationships between NIMR-Tabora and community leaders
        • Conduct formal and informal outreach activities with local stakeholders
        • Use local networks to provide access to hard to reach populations
          • Learn about the dynamics of where you are recruiting participants
          • NGOs working with target population
          • RDS recruitment
      - NIMR Staff Training, photo by Kavita Coombe
    • 16. Next-Steps for Tabora’s HIV Study Preparedness
        • Address male misconceptions of HIV prevention research
          • Provide research literacy programs
            • Increase the understanding locally implemented research (e.g., malaria – treated bed nets)
        • Enhance laboratory capacity within NIMR-Tabora
        • Conduct a cohort HIV incidence study
      - Typical home in central area of Tabora, photo by Kavita Coombe
    • 17. Thank You - NIMR Staff, photo by Dominick Shattuck