| News | September 2013 Volume 5 Issue 1 |
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(Final Issue) The five-year LinCS 2 Durham project has provided opportunities for members of Black communities in Durham, North Carolina and scientists in the region to learn and work together to find new ways to prevent HIV. As the project has come to an end, this will be the final issue of the newsletter. Read on to find out what's been happening and how you can stay involved in the community! Dissemination Events Public Service Announcement
Findings on Facebook Community Survey Findings The results of the LinCS 2 Durham community survey are available! The survey sought to better understand the beliefs, attitudes, and behaviors related to how HIV and AIDS affect Black young adults in Durham. A total of 513 sexually active Black men and women ages 18 to 30 participated. Data were collected from May 2011 to June 2012 and analyzed for 508 of the participants. Selected results, summarized below, have been submitted or will soon be submitted to peer-reviewed journals for publication. Who Participated
For more information about the participants and from where they were recruited in Durham County, please HIV Testing Stigma about HIV and AIDS Concurrent Relationships Only about one out of four men and women reported always using condoms with their steady partners. Men in concurrent relationships were less likely than other men to use condoms with any of their partners—a behavior that puts them and their partners at even higher risk for HIV and other sexually transmitted infections. Black Identity Group Identity Willingness to Participate in HIV Prevention Trials Research Literacy Curriculum LinCS 2 Durham has completed two pilot tests of its HIV prevention research literacy curriculum, which was developed to provide Black young men and women with the knowledge and skills to support informed decision-making regarding engagement in HIV prevention clinical research, both as participants and as partners. Results from the pilot tests, conducted with 26 Black young adults from Durham, show that the curriculum did exactly what it was designed to do. The curriculum is divided into six sections, each focused on a different aspect of HIV prevention research: HIV information, basic research, ethics and human subjects, clinical research, community roles in research, and HIV prevention. Use of the curriculum improved participant knowledge about material from four of the six sections. It also improved attitudes, beliefs, and self-confidence related to material from all six sections. Overall, the curriculum helped the participants become more knowledgeable in many aspects of HIV prevention research. Because it was developed in collaboration with community members and other stakeholders, the curriculum is likely stronger, more culturally appropriate, and more effective than it might have been if a less participatory approach had been used. Staff Profiles Natalie Eley
Natalie Eley, a research associate in the Social and Behavioral Health Sciences Department at FHI 360, says “it seemed like a natural fit that I would be involved in some capacity on the LinCS study.” Natalie is a long-time resident of Durham, with strong personal ties to and work experience in the Durham community, as well as a part of Durham’s Black community in particular. She is also the LinCS 2 Durham study coordinator. “With HIV/AIDS devastating the Black community globally as well as locally, I jumped at the chance to participate in a project that aimed to bring people together to focus on HIV prevention in Durham’s Black community—in my community,” she says. In her role as study coordinator, Natalie has had the unique experience of being involved in nearly every aspect of the study at one time or another. She has monitored the budget, written reports, led team meetings, coordinated study communication efforts, interviewed participants, analyzed data, liaised with the facilitator of the Collaborative Council, and more. “I must say that the members of this particular working group, made up of both community members and research staff, touched my life personally and professionally in more ways than they know,” she says. “With such rich life experiences, knowledge, insight, and humor shared, our working group activities were some of the highlights of my time with the LinCS 2 Durham study. I’m appreciative of the opportunity to know these individuals and optimistic about the community-focused work we’re doing together.” Natalie reflects back fondly on all that she has learned from her LinCS 2 Durham experiences, on the working relationships established, on the friendships developed, and on the work accomplished by all involved over the past five years. “Having an opportunity to work in ‘my’ community with people and institutions whose work I appreciate and respect was very rewarding.” Natalie looks forward to the collaborative efforts that lie ahead.
For as long as Monique Mueller has worked, she has made sure her work focuses on her community. In her home state of New Jersey, she worked at an information and referral service for health and human services. When she lived in Eastern Europe as a member of the Peace Corps, she worked with communities in Moldova. And now that she lives in North Carolina, she has worked with the Chatham County Public Health Department and more recently as a research associate in the Social and Behavioral Health Sciences Department at FHI 360 and as a member of the LinCS 2 Durham research team. “Community engagement is my first priority,” Monique says. “Each community I have lived in has faced different issues, and I have discovered that the community needs to be involved in working out the complexities of the issues and coming up with solutions.” This is a philosophy Monique first encountered as a child through church, friendships, and her family’s other activities in their community. Monique’s mother was a public health nurse and also introduced Monique to HIV prevention issues in the community early on. “My mother took a job at a sexually transmitted disease clinic when I was a teenager, and she didn’t shy away from talking about sex, drugs, language barriers, knowledge gaps, transportation problems, and other topics she encountered regularly with her patients,” Monique says. “She was also open with us when she got stuck by a needle after drawing blood from an HIV-positive patient and had to take steps to prevent infection.” Today Monique uses her community experience and her education, which includes a master’s of science degree in public health, to coordinate activities related to the LinCS 2 Durham community survey. She helped develop the survey, set up the tools needed to implement the survey, and monitor the survey’s implementation. These days she is busy helping analyze and plan dissemination of the survey findings. Monique says that getting to know more about Durham through this work has been extremely rewarding. “LinCS was a wonderful opportunity to see more of my community and to get to know its people in a way I probably wouldn’t have been able to otherwise,” she says. “I’ve made an effort over the years to get to know the places where I live and work, and LinCS confirmed what I have been experiencing—that Durham is an amazing place!” Future of the Collaborative Council Since the Collaborative Council’s initiation, its members have provided ongoing support to the LinCS 2 Durham research study. They have influenced the development and implementation of the study, for example by providing feedback and helping with decision-making. They have participated in various study activities such as community outreach, recruitment efforts, survey development, and journal manuscript writing, among many others. The Collaborative Council has helped to ensure the integrity of the community-based participatory research process throughout the implementation of the study. In anticipation of the LinCS 2 Durham study coming to a close and to build upon its groundwork, the Collaborative Council developed a mission statement for their potential efforts moving forward in the local community. Dedicated community members will be leading the charge. The mission of the LinCS 2 Durham Collaborative Council is to promote research literacy within Durham’s Black community and among the general public. The Collaborative Council will partner with community members and researchers to advocate for and provide research literacy education. The Collaborative Council will also provide opportunity for researchers across an array of disciplines and at various stages of the research process to link with Durham community members for consultation regarding developing and sustaining community partnerships within the Durham Black community. To stay connected with the activities of the Collaborative Council, please send an email to lincs2durham@fhi360.org. A meeting is being planned for October 2013 to discuss the next phase of the Collaborative Council. Join the conversation! Message to the Community To the many stakeholders—participants, community members, researchers, independent process evaluator, partnering institutions, and funder—who have supported and participated in developing and implementing the LinCS 2 Durham project, we say Thank You, Thank You, Thank You! To our dedicated Collaborative Council members, your contributions have been invaluable. Together, we were able to assemble a diverse group with a wealth of knowledge in a variety of areas. Collaborative Council members included representatives from community grassroots organizations, public health and health research organizations, academia, and other specialty areas in addition to representatives from the Durham community at large. We are extremely excited about the work we were able to accomplish together. Although this National Institutes of Health-funded project has come to a close, we look forward to working together to continue LinCS-derived efforts, with the leadership and drive of the many dedicated community members in Durham and surrounding areas who work tirelessly for the causes of HIV prevention, HIV prevention research, and research literacy. We are motivated by what we have accomplished together, as well as what we witnessed through and learned from the accomplishments of each individual. We are enthusiastic about working together going forward! Final Remarks from the Principal Investigator
As a community-based participatory research study, LinCS 2 Durham was intended first to support local HIV prevention efforts and second to contribute to the HIV prevention field more broadly. I am honored to have worked with so many amazing people to achieve these goals. The community survey, focus group discussions, interviews, and targeted advisory board meetings have helped us better understand Black young adults in Durham, which will provide richer insights into the way local context creates both opportunities and challenges for HIV prevention. The HIV prevention research literacy curriculum and ongoing dissemination of our study findings are providing many young adults with knowledge and tools for understanding HIV prevention research specifically, and clinical research generally. And the Collaborative Council has built a strong, lasting bridge between Durham’s Black community and local HIV prevention researchers to help carry this work forward. It has been extremely rewarding to watch as research assistants across all of the partnering institutes, faculty from North Carolina Central University (NCCU) and the University of North Carolina (UNC), and Collaborative Council members took ownership of different parts of the project, brought their insights, and produced brilliant work. I can’t express all of the appreciation and respect I have for the many, many people who contributed to this project over the past five years, both as volunteers and as staff—and in some cases, as both. The most difficult part of the work for me personally has been the sense that there are never enough hours in the day or days in the week to build on all of the opportunities that LinCS 2 Durham has provided. Did we overcome the challenge of not enough time to do all the work we wanted to do? I think the more important question is whether we let that challenge stop us—to which I would say no, we did not. The work goes on. One of the important accomplishments of the Collaborative Council was development of an HIV prevention intervention concept that could address the challenges we face in Durham—and elsewhere—in linking those at greatest risk for HIV and those who are infected but undiagnosed to services and care that can keep them healthy and support them in achieving positive life goals. We have received a small developmental grant from the UNC Center for AIDS Research (CFAR) to pilot one component of that intervention concept. Hopefully this will provide a base for the development and evaluation of the full intervention design. Members of the Collaborative Council are also committed to continuing to meet and explore ways to maintain the bridge between Durham’s Black community and HIV prevention researchers, especially as multiple trials are recruiting locally. We are also interested in continuing to work on the research literacy curriculum and in exploring ways to work more closely with Black young men who have sex with men. So I don’t really see this so much as an ending to LinCS 2 Durham but rather as a transition. We may no longer be a funded project and may be challenged to keep the momentum going without the tremendous staffing support we had, not only from FHI 360 but also from Durham County, NCCU, and UNC. But there is more work to be done and we are pushing forward! Kate MacQueen, PhD, MPH, serves as the principal investigator for the LinCS 2 Durham project. She is a senior scientist in the Social and Behavioral Health Sciences Department at FHI 360 in Durham, NC. Stay Connected! Continue the Spirit of LinCS 2 Durham Durham County Department of Public Health Free HIV Testing HIV/AIDS Clinical Trials HIV Myth Busters Triangle Empowerment Center Keep in Touch
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If the LinCS 2 Durham project is news to you and you'd like to know more, we invite you to watch our public service announcement about the study findings. The short announcement is airing on public television in Durham, Carrboro, and Chapel Hill. The details are below.
