A model for community representation and participation in HIV prevention trials among women who engage in transactional sex in Africa

Shagi, Charles; Vallely, Andrew; Kasindi, Stella; Chiduo, B.; Desmond, Nicola; Soteli, Selephina; Kavit, Natujwa; Vallely, Lisa M; Lees, Shelley; Hayes, Richard; Ross, David A.; Devel, on behalf of the Microbicides

doi:10.1080/09540120701842803

Cited by 46 publications

(59 citation statements)

References 33 publications

(30 reference statements)

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“…In contrast, fewer studies conducted stakeholder engagement in middle‐ (30 studies; 27.8%) 71, 72, 73, 74, 75, 76, 77, 78, 79, 80, 81, 82, 83, 84, 85, 86, 87, 88, 89, 90, 91, 92, 93, 94, 95, 96, 97, 98, 99, 100 and low‐income (nine studies; 8.3%) 101, 102, 103, 104, 105, 106, 107, 108, 109 countries. The location of stakeholder engagement could not be discerned in six studies (5.6%) 110, 111, 112, 113, 114, 115, and fifteen studies (13.9%) 16, 24, 116, 117, 118, 119, 120, 121, 122, 123, 124, 125, 126, 127, 128 conducted stakeholder engagement in multiple countries at different income levels.…”

Section: Resultsmentioning

confidence: 99%

“…CABs were used as often as surveys/questionnaires. Five methods were used by only one study each: concept mapping 35, cognitive mapping 77, crowdsourcing 72 (having a group participate in solving a problem and then sharing the solution with the public), participatory mapping 102 and dramatic performances 112. All five of these studies were published from the year 2005 onward, suggesting more recent diversification of stakeholder engagement methods.…”

Section: Resultsmentioning

confidence: 99%

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Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

Day

Blumberg

et al. 2018

J Intern AIDS Soc

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IntroductionStakeholder engagement is an essential component of HIV clinical trials. We define stakeholder engagement as an input by individuals or groups with an interest in HIV clinical trials to inform the design or conduct of said trials. Despite its value, stakeholder engagement to inform HIV clinical trials has not been rigorously examined. The purpose of our systematic review is to examine stakeholder engagement for HIV clinical trials and compare it to the recommendations of the UNAIDS/AVAC Good Participatory Practice (GPP) guidelines.MethodsWe used the PRISMA checklist and identified English language studies describing stakeholder engagement to inform HIV clinical trials. Four databases (PubMed, Ovid, CINAHL and Web of Science) and six journals were searched, with additional studies identified using handsearching and expert input. Two independent reviewers examined citations, abstracts and full texts. Data were extracted on country, engagement methods, stakeholder types and purpose of stakeholder engagement. Based on the GPP guidelines, we examined how frequently stakeholder engagement was conducted to inform clinical trial research question development, protocol development, recruitment, enrolment, follow‐up, results and dissemination.Results and discussionOf the 917 citations identified, 108 studies were included in the analysis. Forty‐eight studies (44.4%) described stakeholder engagement in high‐income countries, thirty (27.8%) in middle‐income countries and nine (8.3%) in low‐income countries. Fourteen methods for stakeholder engagement were identified, including individual (e.g. interviews) and group (e.g. community advisory boards) strategies. Thirty‐five types of stakeholders were engaged, with approximately half of the studies (60; 55.6%) engaging HIV‐affected community stakeholders (e.g. people living with HIV, at‐risk or related populations of interest). We observed greater frequency of stakeholder engagement to inform protocol development (49 studies; 45.4%) and trial recruitment (47 studies; 43.5%). Fewer studies described stakeholder engagement to inform post‐trial processes related to trial results (3; 2.8%) and dissemination (11; 10.2%).ConclusionsOur findings identify important directions for future stakeholder engagement research and suggestions for policy. Most notably, we found that stakeholder engagement was more frequently conducted to inform early stages of HIV clinical trials compared to later stages. In order to meet recommendations established in the GPP guidelines, greater stakeholder engagement across all clinical trial stages is needed.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

Day

Blumberg

et al. 2018

J Intern AIDS Soc

View full text Add to dashboard Cite

show abstract

“…The key driver appeared to be ensuring the trial was feasible in the local context. Other aims were at play, with specific reference to increasing participation within the trial, 111 empowerment of a community, dialogue between community and researchers so that research is undertaken with people and not on people, 110,111 reduction of the probability of negative reactions to the trial 111 and good participatory practice. …”

Section: Adaptation Of Trial Conduct To Local Contextmentioning

confidence: 99%

Maximising the value of combining qualitative research and randomised controlled trials in health research: the QUAlitative Research in Trials (QUART) study – a mixed methods study

O’Cathain

Thomas

Drabble

et al. 2014

Health Technology Assessment

128

178

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“…Those that were HIV positive were referred to one of the two HIV care and treatment clinics in Mwanza city. As part of the trial, a community liaison system was established to promote dialogue between participants and researchers and address concerns about the trial (Shagi et al 2008;.…”

Section: Anthropological Research Within the Context Of The Clinical mentioning

confidence: 99%

Emergent HIV technology: urban Tanzanian women's narratives of medical research, microbicides and sexuality

Lees

2014

Culture, Health & Sexuality

Self Cite

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In response to the growing HIV epidemic in Africa in the 1990s, microbicide technologies emerged from discourses of empowerment and imaginings of the sexual lives and agency of African women. This draws on an anthropological enquiry which explored narratives from Tanzanian women who participated in a microbicide clinical trial. In the context of the HIV epidemic in Tanzania, women's lives were full of uncertainty and insecurity and their sexual lives were situated in a wider discourse of urban women's sexuality linked to morality and power. Their narratives revealed that women participated in the trial to seek knowledge as well as to 'try' the gel. In relation to their concerns about sexual health, the gel was experienced as cleansing as well as enhancing sexual desire and pleasure. The idea of empowerment imbued in the gel and transported to the women through the clinical trial was meaningful to the women, and this and ideas of sexual health and pleasure suggest future and hopeful possibilities for such HIV prevention technologies. However, if made widely available the potential for enhanced inequalities and further intensified surveillance of women's sexual lives must be considered.

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A model for community representation and participation in HIV prevention trials among women who engage in transactional sex in Africa

Cited by 46 publications

References 33 publications

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

Maximising the value of combining qualitative research and randomised controlled trials in health research: the QUAlitative Research in Trials (QUART) study – a mixed methods study

Emergent HIV technology: urban Tanzanian women's narratives of medical research, microbicides and sexuality

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