The Qhakaza Mbokodo (QM) Research Clinic in Ladysmith, KwaZulu Natal, has conducted microbicide studies for HIV prevention since 2007 and served as one of the sites for FACTS studies. The research centre is affiliated with Ladysmith Hospice Association, which has been involved with community mobilisation, home-based care for people living with HIV, care for affected orphans and children, and monitoring patients on antiretroviral therapy from the Ladysmith Provincial Project since 2000.

QM was activated as an ECHO Study site on 16 March 2016. In this Q&A, the QM team shares their experience over the past 18 months:

What was your experience with retention of participants in the ECHO Study?

The aim of our recruitment strategy was to recruit participants who were unlikely to move away from our catchment area for at least two years; were willing to be randomised to any of the three study methods; and would be available for follow-up visits. Since then, we have learnt that different circumstances (relocation, partner and family support) had a bearing on a participant’s decision to continue on the study or not. For us, relocation — be it local or provincial — was a major contributor to lack of retention. We noticed that changes in a participant’s locator information and contact details were accompanied by missed visits and later loss to follow-up. A follow-up lesson we learnt was that our participants are human! They are not bricks that you pick up and bring to the site in order to reach our targets. Participants were our most valuable part in the study, and we aimed to handle them with care. In the words of our PI, Dr S.L. Sibiya, ‘We must bend back and forth, stretch as much as we can for our participants.’

What were the most surprising things about ECHO?

When ECHO started, we were under the impression that our community would be reluctant to accept the Jadelle implant, especially because DMPA was the method of choice in our community. Some participants were concerned about being assigned Jadelle, because of rumoured side effects. But after providing counselling and education about Jadelle and all the methods used on ECHO, we were surprised at how widely accepted and favoured Jadelle became in our community.

Our community engagement strategies are an ongoing process. From the first stakeholder engagement activity, we have remained transparent about the ECHO Study. We have shared information and updates with stakeholders about the study and discussed possible study results and what this could mean for the participants, ECHO and the community at large.

We would like to thank Thulani Mazibuko, Community Liaison, Recruitment and Retention Manager; Dr Sydney Sibiya, Principal Investigator; and the entire Qhakaza Mbokodo Research Clinic team for their dedication to this important study and their contributions to this article.

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