Effective Care Research Unit (ECRU) is a research unit of the universities of Witwatersrand and Fort Hare, located in East London, South Africa. ECRU’s research specialises in reproductive health outcomes, with focus on hypertensive disorders, postpartum haemorrhage, intrapartum asphyxia, unexplained intrauterine death, unplanned pregnancy and prevention of mother-to-child transmission of HIV. As an accredited World Health Organization (WHO) Collaborating Centre in Reproductive Health Research Synthesis, the unit trains and conducts quality Cochrane reviews and randomised trials on reproductive health issues in low-income settings.
The ECRU site was activated on 26 February 2016. In this Q&A, the team provides insights into their experience as an ECHO Study site:
What was your experience with retention of participants in the ECHO Study?
We experienced several challenges with retention, because participants went through several changes in their lives, such as relocating and starting new jobs or schools. For some this has meant that their contact details have changed, and more efforts have to be made to locate the participants for follow-up.
We have also had some participants being anxious about follow-up visits, because of the different procedures involved, such as cervical cancer screening. With counselling, however, we were able to alleviate much of the anxiety and proceed. We remained humble and respectful of the participants.
In order to dispel myths and misconceptions that could have interfered with retention, we carried out education campaigns to raise awareness about contraception in general and those specific to the ECHO Study.
What lessons did you learn during ECHO?
During the ECHO Study, we have learnt that retention is a process, and it needs proper planning from inception. Also, retention is not specific to the retention team or outreach team. It needs the entire site team to participate. For example, a receptionist at a site can mistreat a participant and cause her not to return for follow-up. Family and community play a vital role in supporting and encouraging participants to remain in the study. Their involvement in the process is key. And we learned that face-to-face interaction with a participant is better than telephonic interaction.
What were the most surprising things about ECHO?
Randomised method acceptance surprised us. At the start, our participants were not familiar with the IUD and Jadelle implant, but they kept their randomised methods even after they had exited the study. Even after we shared the new WHO MEC guidelines, participants that were randomised to DMPA continued using it.
The fear of stigma for using PrEP also surprised us. Some participants refused to take PrEP for HIV prevention, because they were afraid that their families and partners would think they were taking antiretroviral treatment.
What has been the response in the community?
Initially, we had a lot of challenges with gaining access to the community because of fear and anxiety amongst community members. However, this changed over time as we engaged community leaders and held community engagement activities to raise awareness and educate the community about the study.
We would like to thank Bulelwa Nogidela-Makhutha, Project Manager; Dr Joanne Batting, Study Doctor; Dr Mandisa Singata Co-Principal Investigator; and the entire Effective Care Research Unit team for their dedication to this important study and their contributions to this article.