“Research participants want to feel they are better off than they were before research was introduced to them”: engaging cameroonian rural plantation populations in HIV research

Abstract

BackgroundDuring a period of evolving international consensus on how to engage communities in research, facilitators and barriers to participation in HIV prevention research were explored in a rural plantation community in the coastal region of Cameroon.MethodsA formative rapid assessment using structured observations, focus group discussions (FGD), and key informant interviews (KIIs) was conducted with a purposive non-probabilistic sample of plantation workers and their household members. Eligibility criteria included living or working >1 year within the plantation community and age >18 years. Both rapid and in-depth techniques were used to complete thematic analysis.ResultsSixty-five persons participated in the study (6 FGDs and 12 KIIs). Participants viewed malaria and gastrointestinal conditions as more common health concerns than HIV. They identified three factors as contributing to HIV risk: concurrent sexual relationships, sex work, and infrequent condom use. Interviewees perceived that the community would participate in HIV research if it is designed to: (1) improve community welfare, (2) provide comprehensive health services and treatment for illnesses, (3) protect the personal information of participants, especially those who test positive for HIV, (4) provide participant incentives, (5) incorporate community input, and (6) minimize disruptions to “everyday life”. Barriers to participation included: (1) fear of HIV testing, (2) mistrust of researchers given possible disrespect or intolerance of plantation community life and lack of concern for communication, (3) time commitment demands, (3) medical care and treatment that would be difficult or costly to access, and (4) life disruptions along with potential requirements for changes in behaviour (i.e., engage in or abstain from alcohol use and sex activities).ConclusionsConsistent with UNAIDS guidelines for good participatory practice in HIV prevention research, study participants placed a high premium on researchers’ politeness, trust, respect, communication, tolerance and empathy towards their community. Plantation community members viewed provision of comprehensive health services as an important community benefit likely to enhance HIV research participation.

The willingness to participate in biomedical research involving human beings in low‐ and middle‐income countries: a systematic review

“…Additional reasons for participation mentioned were: ability to withdraw , advice from physician , community involvement , cultural acceptability , creating a feeling of community , low pressure decision , need for treatment , research involving a non‐invasive procedure , peer enrolment , low perception of risk , result availability , guarantee of confidentiality , being unaware of voluntariness of participation , research outcome, and finally seeing research participation as motivation to avoid risky behaviour .…”

“…Inconvenience was mentioned in 25 articles as a reason for non‐participation , ranked as the top three reasons fourteen times , and ranked first in four articles . Examples of inconveniences included not having enough time to participate in research, transport issues or a long distance to the research site .…”

“…Additional reasons for participation mentioned were: ability to withdraw [91], advice from physician [20,27,77,85], community involvement [34,[61][62][63]66], cultural acceptability [63,91], creating a feeling of community [44], low pressure decision [75], need for treatment [77], research involving a non-invasive procedure [46,81], peer enrolment [33,44,84], low perception of risk [54,70], result availability [20], guarantee of confidentiality [23,33,34,62], being unaware of voluntariness of participation [46], research outcome, [60,62,66,84] and finally seeing research participation as motivation to avoid risky behaviour [59]. The most important reasons for non-participation were safety concerns, inconvenience, stigmatisation, lack of social support, confidentiality concerns, physical pain, efficacy concerns and distrust.…”

“…Distrust was mentioned in 14 articles [21,34,37,39,41,42,45,53,55,56,58,62,83], and given as a top three reason four times [41,56,58,61]. Distrust was an important factor mostly in Eastern Europe, and was ranked as the eighth most important reason overall.…”

“…Additional reasons given for non-participation were costs [44,58,69,103,111], cultural insensitivity [37,101], fear of false-positive test results after participation in HIV research [36,44,45,50,59,86,93,94], fear of knowledge of health status [19,28,30,54,68], insufficient compensation [21,43], invasive procedures, [1,20,30,39,54,78,87,106] lack of interest [30,34,37,61,86,95,102,104,105,109], lack of clarity [1,30,37,51,52,91,111], not willing to comply to terms of research [55,68,…”