HIV vaccine efficacy trials require the enrolment of large numbers of HIV-negative individuals and thus it is necessary to engage with communities where HIV incidence is high. We identify some of the caveats and pitfalls associated with researching community engagement in the context of HIV vaccine trials. These are as follows: the lack of consensus of what community engagement is and how it is practiced, the sometimes paradoxical role of community advisory boards as community representatives and challenges associated with information dissemination in communities. We identify a set of considerations for community engagement practitioners, trial investigators and social scientists when conducting community engagement.
BuchbinderSPMetchBHolteSE, et al. (2004) Determinants of enrolment in a preventive HIV vaccine trial: Hypothetical versus actual willingness and barriers to participation. JAIDS: Journal of Acquired Immune Deficiency Syndromes36: 604–612.
2.
ChakrapaniVNewmanPASinghalN, et al. (2013) ‘If It’s Not Working, Why Would They Be Testing It?’: Mental models of HIV vaccine trials and preventive misconception among men who have sex with men in India. BMC Public Health13: 731.
3.
DaltonSOrfordJParryJ, et al. (2008) Three ways of talking about health in communities targeted for regeneration: Interviews with community professionals. Journal of Health Psychology13(1): 65–78.
4.
EstacioEV (2013) Health literacy and community empowerment: It is more than just reading, writing and counting. Journal of Health Psychology18(8): 1056–1068.
5.
HaysRBKegelesSM (1999) Factors related to the willingness of young gay men to participate in preventive HIV vaccine trials. JAIDS: Journal of Acquired Immune Deficiency Syndromes20: 164–171.
6.
KoblinBAHolteSLenderkingB, et al. (2000) Readiness for HIV vaccine trials: Changes in willingness and knowledge among high-risk populations in the HIV network for prevention trials. JAIDS: Journal of Acquired Immune Deficiency Syndromes24: 451–457.
7.
KoenJEssackZSlackC, et al. (2013) ‘It looks like you just want them when things get rough’: Civil society perspectives on negative trial results and stakeholder engagement in HIV prevention trials. Developing World Bioethics13: 138–148.
8.
LaneTRaymondHFDladlaS, et al. (2011) High HIV prevalence among men who have sex with men in Soweto, South Africa: Results from the Soweto Men’s Study. AIDS and Behavior15: 626–634.
9.
LeschAKafaarZKageeA, et al. (2006) Community members’ perceptions of enablers and inhibitors to participation in HIV vaccine trials: Health psychology. South African Journal of Psychology36: 734–761.
10.
LindeggerGMilfordCSlackC, et al. (2006) Beyond the checklist: Assessing understanding for HIV vaccine trial participation in South Africa. JAIDS: Journal of Acquired Immune Deficiency Syndromes43: 560–566.
11.
MacQueenKMBhanAFrohlichJ, et al. (2015) Evaluating community engagement in global health research: The need for metrics. BMC Medical Ethics16: 44.
12.
MarshVKamuyaDRowaY, et al. (2008) Beginning community engagement at a busy biomedical research programme: Experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya. Social Science & Medicine67: 721–733.
13.
MolyneuxSMulupiSMbaabuL, et al. (2012) Benefits and payments for research participants: Experiences and views from a research centre on the Kenyan coast. BMC Medical Ethics13: 13.
14.
NewmanPA (2006) Towards a science of community engagement. The Lancet367: 302.
NewmanPAChakrapaniVWeaverJ, et al. (2014) Willingness to participate in HIV vaccine trials among men who have sex with men in Chennai and Mumbai, India. Vaccine32(4): 5854–5861.
17.
NewmanPARubincamC (2014) Advancing community stakeholder engagement in biomedical HIV prevention trials: Principles, practices and evidence. Expert Review of Vaccines13: 1553–1562.
18.
NewmanPALogieCJamesL, et al. (2011) ‘Speaking the dialect’: Understanding public discourse in the aftermath of an HIV vaccine trial shutdown. American Journal of Public Health101: 1749–1758.
19.
NewmanPARoungprakhonSTepjan, et al. (2012) A social vaccine? Social and structural contexts of HIV vaccine acceptability among most-at-risk populations in Thailand. Global Public Health7(9): 1009–1024.
20.
NewmanPARubincamCSlackC, et al. (2015) Towards a science of community stakeholder engagement in biomedical HIV prevention trials: An embedded four-country case study. PLoS One10(8): e0135937.
21.
PatelPFrederickTKiddSA (2018) Physical health, community participation and schizophrenia. Journal of Health Psychology23(1): 79–83. DOI: 10.1177/1359105316666654.
22.
ScheibHALykesMB (2013) African American and Latina community health workers engage PhotoPAR as a resource in a post-disaster context: Katrina at 5 years. Journal of Health Psychology18(8): 1069–1084.
SlackCM (2014) Ancillary care in South African HIV vaccine trials: Addressing needs, drafting protocols, and engaging community. Journal of Empirical Research on Human Research Ethics9: 83–95.
25.
SlackCMThabetheSLindeggerG, et al. (2016) ‘… I’ve gone through this my own self, so I practice what I preach … ’: Strategies to enhance understanding and other valued outcomes in HIV vaccine trials in South Africa. Journal of Empirical Research on Human Research Ethics11: 322–333.
26.
StraussRPSenguptaSKegelesS, et al. (2001) Willingness to volunteer in future preventive HIV vaccine trials: Issues and perspectives from three US communities. JAIDS: Journal of Acquired Immune Deficiency Syndromes26: 63–71.
27.
SwartzLKageeA (2006) Community participation in AIDS vaccine trials: Empowerment or science?Social Science & Medicine63: 1143–1146.
28.
TindanaPOSinghJATracyCS, et al. (2007) Grand challenges in global health: Community engagement in research in developing countries. PLoS Medicine4: e273.
29.
UNAIDS-AVAC (2007) Good Participatory Practice: Guidelines for Biomedical HIV Prevention Trials. Geneva, Switzerland: UNAIDS.
