Recently, all 12 STREAM Community Advisory Boards (CABs) from seven different countries came together for the first time for a webinar that revealed many common challenges and experiences in their support of the STREAM clinical trial and the fight to beat TB. The webinar was focused on sharing challenges and solutions at STREAM trial sites and, by the end of the session, participants concluded they have a surprising amount in common and can learn a great deal from each other, despite the diverse settings where they work.
Many CABs mentioned the challenge of how best to support patients to complete their prescribed treatment.
“Sometimes, patients experience rapid improvement in symptoms after starting treatment, which can lead them to discontinue their treatment. In other cases, the duration and significant side effects of treatment can be significant barriers to completing treatment,” explained Nombuyiselo Tshandu, Community Liaison Officer (CLO) at the STREAM CAB in Johannesburg, South Africa.
Another significant challenge that was discussed was the lack of understanding of tuberculosis (TB) in affected communities and the lack of research knowledge. To address these issues, CAB members talked of their work to provide complete and accessible information to the affected communities and trial participants. This helps build a relationship of trust with trial participants, as well as ensuring they understand the progression of their illness and what to expect from the medicines they will take. CABS from some sites also discussed how they offer home visits and encourage involvement of family members in the treatment process. CAB members undergo regular training so that they are equipped to address the issues encountered by trial participants and provide adequate support.
The South African CABs attending the webinar talked of their experience of improving literacy in affected communities using locally-appropriate methods. One example described was how they perform plays to improve understanding and promote acceptance of the trial, sometimes with the support of previous trial participants. The South African CABs also educate traditional healers and community leaders about the fundamentals of research and TB so that accurate information can be shared with community members.
Many members of the CABs have themselves previously undergone treatment for TB or MDR-TB. This gives them significant credibility when working with STREAM trial participants and serves to promote a climate of trust. Speaking during the session, Oxana Rucsineanu, multidrug-resistant TB (MDR-TB) survivor and STREAM CAB Coordinator, Moldova, said, “Being a former MDR-TB patient helps me in my role as a CAB member, because I see things from the inside out, and it helps me in bridging the gaps between affected community, service providers and decision-makers.”
The trial will continue to seek out opportunities for STREAM CABs to share challenges and solutions, building on the significant experience of these key stakeholders. The April 2019 Joint CAB Meeting in South Africa will continue the discussion begun during the all-CAB webinar, and representatives of all CABs will gather at The Union’s World Conference on Lung Health in Hyderabad in October 2019. To read more about the STREAM CABs, click here.