Eight times as many HIV-positive Africans living in the UK have problems with knowledge about their HIV treatments than HIV-positive white British, but are nevertheless just as likely to adhere to treatment, according to research published this month.
Project Nasah recruited over 400 black Africans with HIV in the UK to investigate their HIV treatment information and other needs. The research was a collaboration between NAM, the National AIDS Trust, the African HIV Policy network, and conducted by Sigma Research. Nasah was designed to remedy the under-representation of Africans, who are the second largest group (after gay men), affected by HIV in the UK, in earlier studies into need.
A total of 435 people were interviewed for the study, their age and sex being representative of the demographics of the African HIV community in the UK. Interviewees were recruited by African interviewers through peer networks in London, Greater Manchester, West Yorkshire and Oxfordshire.
The sample was well educated, with almost a quarter having a university degree or higher qualification. Despite this, over 50% were unemployed, and only 11% were in full-time employment.
Over two-thirds of the sample had had their HIV infection diagnosed less than five years ago, with the average time since diagnosis two years ten months. Thirty-eight percent first tested for HIV whilst receiving inpatient care for an HIV-related illness and 55% of the sample had been unwell because of HIV.
Anti-HIV therapy was currently being taken by 73% of the sample, with people reporting that they were unemployed, off sick or retired most likely to report use of HAART.
Problems living with HIV were widely reported and in all but three measures significantly more widespread than those reported by HIV-positive white British people in the What do you need? study published by Sigma in 2002. Having enough money to live on was the most common problem; mental health issues, relationships, housing conditions and immigration status were all cited by at least half of respondents as problems. With the exception of mental health issues, all these problems were more likely to be experienced by Africans with HIV than their white counterparts questioned in the What do you need? survey
Although 36% reported problems with adherence in Nasah, this was comparable to the 31% of What do you need? respondents.
Although the majority of people interviewed in the Nasah study said that they had had no problems obtaining HIV treatment information in the last year, 27% did report difficulties and this figure is eight times greater than the white British sample in What do you need?. 36% said that they were dissatisfied with their knowledge of treatments, although Zimbabweans were less likely to report dissatisfaction compared to Ugandans. One in seven Africans said they did not know enough about the medication they were taking currently, and 32% indicated that they felt unsure that they knew all they should.
The authors suggest that recent HIV diagnosis may explain the larger proportion of Africans who reported difficulties or said they needed to know more about treatments.
Areas of knowledge felt to be most lacking were:
- Lipodystrophy (63% not satisfied or unsure they knew enough)
- Clinical trials (65%)
- Side effects of treatment (38%)
- Illnesses related to HIV (37%)
- Resistance (38%)
- Looking after children (37%)
- Pregnancy and HIV (35%)
Treatment information interventions
Talking with medical staff was overwhelmingly judged by Africans to be the method that had been most important to them in finding out about anti-HIV treatments - 63% reported it to be the most important method, compared to 11% who cited talking to other people with HIV, and 6% who reported talking to workers from HIV organisations as the most important method.
Forty one per cent said that they always understood what medical staff told them, and 56% said that they `usually` understood. Three per cent never understood what they were told, and 16% of current treatment takers never told their clinician that they had missed doses
Although the relationship with medical staff emerged clearly as the most important source of information for Africans, Nasah’s findings also challenged some well established myths about the modes in which Africans prefer to receive treatment information. Oral sources had been thought to be the most important source of treatment information, but Nasah found that over 90% had read treatment newsletters or leaflets in the past year, 86% had found them an important learning tool and 74% wanted to access them in the future.
In addition, nearly two-third of the sample reported wanting to read more about treatments. Nor did stigma or fear of disclosure of health status appear to deter people from having HIV information in their homes, with 86% saying that they took HIV treatment information home with them from the clinic and 27% reporting a subscription to an HIV treatments newsletter.
Conclusions
The research group conclude that "all the specific types of interventions through which anti-HIV treatments information is currently delivered were acceptable and appropriate to the majority of respondents." However, they also noted that any future interventions to improve knowledge of anti-HIV treatments should be heavily biased towards African people in the UK.
Further information on this website
Project Nasah - pdf of original research report
Most people with HIV in UK coping with day-to-day life - news story on What do you need? research