Most people with HIV in the UK cope well with the day-to-day issues involved in living with the disease, according to a recently published UK survey.
The What do you need? survey, was conducted by Sigma Research of Portsmouth University with the help of HIV organisations around the UK , and was completed by over 1,800 HIV-positive people.
The survey, which consisted of a self-completed questionnaire, was designed to assess the needs of HIV-positive people in 18 areas which, when taken together provide an insight into the range of physical, psychological, social and medical issues which the UK’s HIV-positive population face. Although people from all the groups affected by HIV in the UK completed the survey questionnaire, white gay men were over-represented (approximately 1,300 of the sample and 55% of total HIV cases in the UK) and black Africans (113 of the sample and approximately 25% of all HIV cases in the UK) heavily under-represented.
In all areas a clear majority of respondents were either fairly happy or very happy with their current state and ability to cope. Sex, anxiety/depression, sleep, self-confidence, money and employment opportunities were the issues which respondents expressed the highest levels of current dissatisfaction with, but no more than 40% of respondents said they were either “very” unhappy” or “fairly unhappy” in any of the 18 sections of the survey.
That is not to say that people with HIV had not faced problems. In the twelve month period before the study, over two-thirds of respondents had had an episode of depression and almost 60% reported difficulty sleeping. Over 50% had had problems with sex in the last year and over 30% of people questioned reported problems with self-confidence, eating and drinking, chores and self care and money.
Of those taking anti-HIV treatment, only 4% said they were very unhappy (1%) or fairly unhappy (3%) with their knowledge of HIV treatments. “The most common problem was simply finding the relevant information to answer the questions raised by personal circumstances and interests” notes the report, adding “few respondents were concerned about the adequacy or complexity of the treatment information available.” Specialist HIV clinics and HIV organisations were the sources of information most often consulted by those with information needs. Only 2% (32 people) of respondents to the survey said that they had problems with treatments information and that these had not been addressed.
The overwhelming majority of respondents also appear able to adhere to their HAART regimen, with only 7% feeling very unhappy (2%) or fairly unhappy (5%) about their ability to adhere. A total of 39% of people reported never missing a dose of medication, 33% said they had missed doses, but with a frequency of less than once a month and 12% said they forgot to take their medication on average once a month. Only 1% reported failing to adhere on a daily basis, a further 1% said they missed a dose every few days, 7% once a week and 7% once a fortnight.
Forgetfulness was reported as the most frequent reason for not taking medication, and 43% who reported problems with taking their medication in the past year said that their problem had resolved or improved. However for 14%, the problems had become worse.
The survey also revealed a very wide range of educational attainment, with the sample evenly split with a third having no education post-16, a third having some education to age 18 and a third having a college or university degree. Irrespective of educational attainment, a similar number of respondents reported problems with adherence (23 in the low education group, 26 in the medium and 24 in the high) and with HIV treatment knowledge (6 people in the low education group, 5 in the medium and 4 people educated to degree level).
Irrespective of the need area, the three sources of support and information people were most likely to turn to were their HIV clinic; friends; and, and an HIV organisation.
The study concludes that despite HAART, HIV still takes a “toll on mental health, personal relationships and quality of life.” The principle quality of life problems reported were: depression, problems with sex and difficulty sleeping, problems which are also common amongst HIV-negative people. It would be interesting to compare the results of this research against one carried out in a demographically similar HIV-negative control population to see if the range and severity of problems reported can be connected with the routine of day-today living, aging, or coming from sexual or racial minorities as much as living with HIV.
Reference:
Weatherburn P et al. What do you need? Findings from a national survey of people living with HIV. Original Rsearch Report, Sigma Research 2002.