In this study, we used a culturally appropriate engagement approach that is grounded in community perceptions, beliefs and expectations. We found this approach encouraged participants to share information about themselves and their community. Interacting with the community, learning and understanding their perceptions and preferences provided valuable means of engaging the community and maximizing the potential for community participation. The importance of community participation in HIV research has been demonstrated across different settings and is considered “good participatory practice” by UNAIDS . Working in Uganda, Kiwanuka-Tondo and Synder  found that organizational characteristics and quality of community engagement had a great impact on peoples’ willingness to participate. Manson and colleagues  found that cultural values necessary for performing research with indigenous populations revolved around “trust, respect, self-determination, mutuality of interest, perspective taking, full participation, reciprocity, collective benefit and long-term commitment” (p. 73 S). Averill  concluded that without effectively engaging the community through building trust and reciprocity, researchers may end up with irrelevant findings and recommendations. UNAIDS guidelines for good participatory practice also invokes core principles of respect, autonomy, transparency, and access to care .
That study participants place a high premium on politeness, trust, respect, communication, tolerance and empathy from researchers towards their community suggests that some of the fundamental barriers to HIV research participation may lie in researchers’ untoward attitudes, behaviours and manner of interaction with their host communities. Notably, participants indicated that researchers should respect confidentiality and protect the privacy of HIV-infected participants. These findings are consistent with revelations from other studies and reinforce the UNAIDS core principles.
Our research was conducted against the backdrop of the premature closure of a Phase III clinical trial of antiretroviral pre-exposure prophylaxis among female sex workers in Douala . This closure was driven by community and international advocate group concerns about incomplete risk communication as well as incomplete informed consent and post-trial care for women who tested HIV positive. These controversies drew extensive domestic and international media coverage. During the same time period, there was heightened attention in the international research community about the conduct of scientifically and ethically sound multinational HIV research, particularly in developing countries, and UNAIDS was in the process of developing new guidelines for “good participatory practice” for biomedical HIV prevention trials .
Interestingly, our study participants made no mention of this study despite the plantation’s geographic proximity to the city where the trial was being conducted. This could be interpreted as evidence of the relative isolation of these plantation communities.
Elsewhere in Kenya and Uganda, studies found that study participants most commonly indicated that they desired a “kind” person to conduct voluntary counselling and testing . Further, in Thailand and also in Kenya, study participants showed an overwhelming willingness to participate in future HIV prevention research but this initial willingness could be compromised if the research process failed to adequately deal with community-specific expectations, sensitivities and other social complexities [26, 27]. Our study not only lends support to these views but also underscores the need for researchers to understand communities and let communities understand researchers as a critical means of establishing trust, promoting informed participation in HIV research at the individual- as well as community-level, and share in the understanding that addressing HIV prevention and treatment is a shared endeavour. This has the potential to minimize research-related rumour, controversy and failure.
Participants cited several themes that would suggest increased risk of HIV transmission in this community, including: concurrent sexual relationships; sex in exchange for money or other resources; scarcity of condoms; reluctance to use condoms because of perceived reduction in pleasure and lack of confidence in their protective effects; difficulty abstaining from sex; and commonly encountered sexually transmitted infections (STIs). From the reports of study participants, members of the plantation community desired access to general health services such as prevention and treatment of malaria and gastrointestinal disorders, voluntary HIV counselling and testing, provision of condoms, and comprehensive HIV/STI prevention, care and treatment programs. Access to general healthcare services was viewed as a critical community benefit, and a precondition for long-term research to take place in this low-resource setting.
We found that providing modest incentives (transport reimbursement, condoms) was valuable to the process of engagement and provided tangible thanks for the contributions participants made to the study and data generation process. We also found that these minimal incentives kindled community’s enthusiasm for our project and increased desire to participate in HIV research. Incentives have proven to be an effective tool in reducing refusal as well as discontinuation rates among research participants in developed and developing countries . Since participants often incur costs for their participation, providing incentives could help to defray some of these costs. Our study provides additional evidence that incentives are critical for community engagement and maximizing research participation even in settings that are relatively research-naïve.
This study reveals the presence of multiple barriers, real or perceived, that could potentially affect participation in HIV research in rural agro-plantation communities in Cameroon. Alternating periods of employment and unemployment and regular migration of people into and out of the plantation community make this population an unsuitable target for longitudinal public health HIV investigations. Longitudinal studies targeting this community would have to establish a means to track temporary workers outside of the plantation setting, or may have to exclude these workers, who constitute about 80% of company employees, due to their propensity to be mobile.
One important factor likely to limit participation in HIV research among these workers is the pragmatic issue of time, inconvenience and the probable disruption to normal daily routines resulting from their participation. Plantation workers in this setting have full schedules since wages depend on the amount of labour accomplished and number of hours worked. To maximize their earnings, workers often have to work overtime, and thus have little time for other duties. Providing incentives can also be a symbolic compensation for work hours lost due to participation and could minimize the direct and indirect cost of participation.
Although most study participants had not previously participated in research, some of the potential barriers they identified were similar to those cited by persons in more research-familiar settings. Qualitative studies have found that fear of being treated like guinea pig, [29, 30] uncertainty about research outcome for participants  inadvertent disclosure of participants’ HIV status , and pragmatic obstacles such as changes to daily routines  could be major barriers that minimize people’s participation in research. Our findings complement observations from Kenya, South Africa and Thailand where systematic reviews and other studies cited mistrust of researchers and the research process as significant barriers to participation in HIV research [26, 27, 33] .
Our study is not without limitations. Although conditions in our study setting have changed little, if at all, a 6-year time lapse from when the data was collected to when it is published is in itself a limitation worthy to be noted. As in most qualitative studies, our sample size was small. Our findings may be unique to those persons taking part in this formative study and therefore not generalizable to the larger plantation population or other settings. Moreover, perceived facilitators and barriers to HIV research participation may differ greatly from those actually experienced. Nevertheless, the study offers insights on potential facilitators and barriers to participation in HIV research among these plantation communities. As a reflection on “good participatory practices”, the study has also been able to demonstrate the importance of formative work prior to initiating HIV prevention research in a unique community setting.