Research Note: The LIVITY study: research challenges and strategies for engaging with the black caribbean community in a study of HIV infection

Abstract

There is an increasing incidence of new HIV‐1 diagnoses among black Caribbeans in the UK, but there has been limited research in this area. The LIVITY study is the first in‐depth epidemiological and behavioural study to examine the impact of HIV among black Caribbeans in the UK. The UK black Caribbean community has traditionally been regarded as less likely to participate in clinical research and surveys. We identified three major challenges to recruitment to the LIVITY study: general distrust of the research process; the considerable stigma surrounding HIV in the black Caribbean community and the sensitivity of obtaining detailed sexual histories. The strategies devised to help overcome these barriers to optimise recruitment included: the establishment of a black Caribbean Community Advisory Group to facilitate communication between the community and the researchers and assist in questionnaire design to improve acceptability to the participants; use of healthcare practitioners as gatekeepers; extensive piloting and modification of the questionnaire among black Caribbean patients; reassurances of confidentiality during recruitment; and ethnic matching between interviewer and study participants. Another challenge was the high rate of loss to follow‐up among eligible patients, potentially compromising the study’s generalisability. Nevertheless, use of the above strategies resulted in a satisfactory enrolment rate of 57%, who were representative of all eligible patients.