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.
| Original language | English |
|---|---|
| Pages (from-to) | 197-209 |
| Number of pages | 13 |
| Journal | International Journal of Social Research Methodology |
| Volume | 12 |
| Issue number | 3 |
| DOIs | |
| Publication status | Published - Jul 2009 |
Bibliographical note
Funding Information:The LIVITY study is the first HIV-related epidemiological and behavioural research project employing quantitative and qualitative methodological approaches to focus on the black Caribbean community in the UK. The main objective was to describe the sociodemographic, clinical and behavioural characteristics of a sample of known HIV-infected black Caribbean patients in south London, in addition to 300 black Caribbean genitourinary medicine clinic attenders not known to be infected in south London. A further objective was using qualitative methodologies to examine the contexts and the experiences surrounding living with HIV, high-risk behaviours, and travel and migration. Patients were enrolled from HIV clinics in southeast and southwest London. The main research tool was a comprehensive questionnaire comprising 11 sections: General Information; General Health and Sexual Activity; Sexual History; Travel to the Caribbean; Sex With People From the Caribbean; Lifestyle; Sexually Transmitted Infections; Your HIV Diagnosis; Sex Before Your HIV Diagnosis; Sex After Your HIV Diagnosis; and Attitudes and Opinions. This was a self-administered questionnaire, but research staff (I.S. and M.A.) were available to assist where there were literacy or other problems. A blood sample was also obtained to test for the presence of other infections such as Hepatitis B and C and HTLV-1. Qualitative, in-depth interviews with a purposively selected sample of 25 HIV positive and 22 STD clinic attendees probed the circumstances surrounding sexual activity and condom use, the impact of travel and/or migration on sexual behaviour and coping with HIV infection. Participants were reimbursed for their time (£20 for completing the questionnaire and a further £20 for participating in the in-depth interviews) and travel expenses. Ethical approval was granted by the Northwest Multi-centre Research Ethics Committee (MREC) (04/MRE08/18). The LIVITY study was funded by the Medical Research Council (No. G0200585).
