Participant views and experiences of participating in HIV research in sub-Saharan Africa: a qualitative systematic review

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Abstract

Background

Human immunodeficiency virus (HIV) clinical trials are increasingly being conducted in sub-Saharan Africa. There is a tension between the pressure to increase levels of research participation and the need to ensure informed consent and protection of participants' rights. Researchers need to be aware of the particular ethical issues that underpin HIV research conduct in low income settings. This necessitates hearing from those who have participated in research and who have direct experience of the research process.

Objectives

This review aimed to synthesize and present the best available evidence in relation to HIV research participation in sub-Saharan Africa, based on the views and experiences of research participants.

Inclusion criteria

Types of participants

Inclusion criteria

The review included studies whose participants were current or former adult HIV research participants from sub-Saharan African countries.

Inclusion criteria

Phenomenon of interest

Inclusion criteria

Views, experiences, attitudes, understandings, perceptions and perspectives of HIV research participants in sub-Saharan Africa.

Inclusion criteria

Types of studies

Inclusion criteria

This review considered studies that focused on qualitative data, including, but not limited to, designs such as phenomenology, ethnography, grounded theory, action research and feminist research.

Search strategy

A three-step search strategy was utilized. Seven databases (CINAHL, Ovid MEDLINE (R) 1946, ASSIA, PsychInfo, Web of Science, EMBASE, and African Index Medicus) were searched with no limitation to years of publication, followed by hand searching of reference lists. Only studies published in the English language were considered.

Methodological quality

Methodological quality was assessed using the Qualitative Assessment and Review Instrument (JBI-QARI) developed by the Joanna Briggs Institute.

Data extraction

Qualitative findings were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI).

Data synthesis

Qualitative research findings were pooled using a pragmatic meta-aggregative approach and the JBI QARI software.

Results

Twenty-one studies were included in the review. One hundred and thirty-six findings were extracted from included studies and clustered into 14 categories based on similarities in meaning. These were further synthesized into five synthesized findings, set out below;

Conclusions

Individuals are generally willing to participate in HIV research. However their understanding of the process can be limited, and the experience may cause anxiety or have negative consequences. Furthermore longer-term participation may become problematic due to socio-economic pressure or social commitments.

Conclusions

Implications for practice

Conclusions

The review suggests a need to develop better ways to explain research processes and to support participants, when/if they encounter problems. There is also a need to engage better with communities in order to educate them about HIV research programs.

Conclusions

Implications for research

Conclusions

All the included studies focused on experiences around research enrolment and participation (retention); however there is a complete evidence gap on experiences of trial closure.

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