Our Work

The Tulumbe! Project was initiated through the Pipeline to Proposal (P2P) Awards established by the Patient-Centered Outcomes Research Institute (PCORI). In less than two years, we have established a strong network of stakeholders and a realistic pathway to tackle issues fueling HIV inequalities among African immigrants – women, men, youth and families – living with or at high risk for HIV. Our partnership has identified 6 topics, each with a list of research questions, that are critical to addressing HIV among African immigrants in the United States.

Tulumbe

YEAR 1

We had several great achievements during Year 1. First, we created a meaningful collaboration with knowledgeable partners. Developing a mission statement, purpose, guiding principles and values as part of our Governance document supported the partnership in cultivating a spirit of friendship and community.  We demonstrated that being open, appreciating and understanding that each person at the table has different experiences to offer enriches the collective work of the partnership. Our name, the Tulumbe! Project, which means “to engage” in Luganda (a language in Uganda, East Africa) was defined. The name Tulumbe has helped us to form an identity and it became a mantra with the community. TULUMBE! TULUMBE!

We also focused on engaging stakeholders – African immigrants, community organizations, health care providers, and researchers. We held 2 community forums to hear from African immigrants about barriers and facilitators to utilizing HIV services. More than 70 African community members, including patients, were engaged through community forums in Lowell, MA and Boston, MA. In addition, we collected survey responses from health care providers on the critical issues and successes experienced when providing HIV screening, linkage to care, and treatment services to African immigrants. Most respondents resided in Massachusetts (68%), worked at local community health centers (42%), and had more than 10 years providing services to African immigrants (40%).

We analyzed the information collected and developed 5 health topics.

Increase safer sex and testing among African immigrant youth: There is a lack of cultural, youth friendly HIV prevention services tailored to African immigrant youth. Youth are not getting information on HIV prevention and are not engaging in safer sex practices.

Reduce HIV stigma in the community: High levels of stigma within the African immigrant community affect HIV/STI testing, disclosure, access to care and the overall health of African immigrants. HIV stigma associated with the fear of being HIV-positive and negative social consequences deter African immigrants from getting tested. In addition, because of stigma, HIV positive African immigrants often live in isolation, not telling anyone in their family or community of their diagnosis. This can often lead to poor health outcomes, internalized stigma, and depression.

Improve family communication (parent-child, parent-parent, child-child) about sexual health: Discussions about HIV and HIV prevention are not common among African immigrant families. There is often no dialogue between parents and children about sex, safe sex practices and the need for HIV/STD screenings.

Increase self-efficacy among African immigrant women: African culture regards men as head of the house. Women are expected to be inferior and submissive to men. The power imbalance limits women’s ability to make safer sex decisions.  Women need to be empowered to know their bodies, options for sexual health and challenge gender dynamics in order to protect themselves from HIV and other sexually transmitted diseases.

Deconstruct masculinity to increase testing, risk reduction and partner communication: The gender power imbalance is a hindering issue that prevents HIV and sex related discussions among couples. Men are seen as heads of the households giving them the power to make family decisions without regarding their female partner’s inputs. Thus, communication with their partners on HIV is limited. There is a need for men to understand HIV risk reduction and value dialogue between their partners to prevent HIV.

YEAR 2

Year 2 commenced with convening a community report back event. The 5 health topics were presented back to the community to gain feedback and we asked attendees to prioritized the three health topics most important for Tulumbe! to address first. Through a voting process, attendees selected – (1) reducing HIV stigma in the community, (2) increasing safer sex and testing among African immigrant youth, and (3) improving family communication around sexual health.

We continued to gain feedback on the health topics and research questions by presenting at the Massachusetts Integrated Prevention and Planning Council (MIPPC), which is a group of consumers, HIV providers and staff from the Office of HIV/AIDS that provide guidance on HIV prevention and care program and policy initiatives. In addition, to adding several research questions, the discussion with MIPPC members yielded another health topic – health literacy.

Increase health literacy: Health literacy is the degree to which an individual can obtain, process, understand, and communicate about health-related information needed to make informed health decisions.” Health providers and patients experience barriers in communicating effectively. This impacts providers’ understanding patients’ needs and patients accessing comprehensive care.

We also distributed a survey to 50 African immigrants. The goal of the survey was to have community members prioritize research questions in each of the 6 health topics. 42 community members participated in the survey. Some of the most popular research questions included, ‘What does disclosure look like for African immigrants living with HIV,’ ‘How are African immigrant youth in the US learning about sexual health,’ and ‘How is sexual health defined, understood and experienced within African cultural beliefs and understandings?’   

community forum

NOW and NEXT STEPS …

Led by the community, the Tulumbe! Project has successfully developed 6 health topics. Each have research questions that encompass the research continuum – comparative effectiveness research, cross-sectional surveys, qualitative exploratory studies and more! We believe that the final health topics and questions are appropriately developed for research, but are also applicable to what needs to be accomplished in other areas, such as advocacy, policy and service delivery.

In 2018, the Tulumbe! Project received funding from to Getting to Zero (GtZ) Coalition through AIDS Action Committee of Boston. The GtZ mini grants initiative is an opportunity provided by AIDS Action to the larger community interested in addressing HIV-related issues among key populations within Massachusetts. Our research project actively engages the target population in reducing HIV-related stigma among African immigrants in Greater Boston by developing, disseminating and evaluating content for a photo-based stigma-reducing project.  The focus of the project is as direct result of our work funded through PCORI. HIV-related stigma was one of the priority areas highlighted by the community members and stakeholders engaged throughout the project. It is also the biggest hindrance in addressing HIV within the African immigrant community. For our GtZ project, participants will discuss HIV-related stigma and have two weeks to take pictures of what stigma looks like to them in their life. Participants will come back together to discuss their photo, identify key themes, select the most popular pictures in each theme and develop 3 to 5 stories around each picture, also known as photovoice stories. Tulumbe! partners will develop the photovoice stories into posters and fliers. Each will be presented to at least 50 community members with a pre and post survey to access whether attitudes around stigma changed after interacting with the photovoice stories. The study was approved by The Partners Human Research Committee (PHRC), which is the Institutional Review Board (IRB) of Partners HealthCare.