Top four needs of people with HIV in the UK all related to mental health

Anxiety and depression, self-esteem, sleep and sex are the areas of life that pose problems to the greatest number of people living with HIV in the UK, according to a new study published by Sigma Research. They note that these problems relate to the intimate details of personal experience and quality of life, rather than to practical and physical problems.

However, in many instances, people experiencing problems had not received any help or support during the past year. When people did receive help with the top four issues, it was frequently from clinical services, but informal support from friends and family was also highly valued.

Methods

The What do you need? study used a fairly lengthy self-completion questionnaire that was distributed by a range of HIV-related voluntary organisations and a number of HIV outpatient clinics.

A total of 1777 questionnaires were completed by adults living with HIV in the UK. Four out of ten respondents were recruited via aidsmap.com or NAM’s HIV Treatment Update newsletter.

The questionnaire focused on 20 topic areas that previous research had identified as potentially problematic for people with HIV, such as immigration, relationships with family, self-esteem and discrimination. For each of these topic areas, the questionnaire attempted to establish whether the respondent had experienced problems in the past year, and what those problems were.

When this survey was last conducted in 2001, only 6% of respondents were black African, and the researchers have managed to increase participation by people of this background to 15%. Nonetheless, this falls short of the 37% of people with HIV in the UK who are black African (the latter figure comes from the Health Protection Agency’s monitoring of people using treatment services).

Moreover, the sample is disproportionately male (79%, compared to 66% of people with HIV), disproportionately gay or bisexual (72%, compared to 46% of people with HIV) and includes a greater proportion of older people (38% are over 45, compared to 30% of people with HIV).

However, the published report does address this bias by providing analyses of the needs of specific sub-groups such as women, young people, black Africans, people with immigration problems, and people who are recently diagnosed.

Problems

In each of the following areas, seven out of ten respondents reported having problems in the past year: anxiety and depression, self-esteem and self-confidence, sex, and sleeping.

Moreover, when questions about problems were asked in slightly different ways, the greatest levels of need were always in relation to the same four areas.

Many respondents described the cause of their anxiety or depression, and whilst the responses were very diverse, a great many were explicitly related to living with HIV. Moreover, among the most common causes cited for problems with self-esteem and self-confidence were worries about the future, changes in appearance or body, and worries about disclosing HIV status.

The most frequent problem related to sex was having too little or no sex, and this was often linked to poor self-image. Difficulties sleeping were most commonly caused by problems with mental health, physical health or medication.

Whilst these mental-health-related problems were important for all sub-groups, some additional issues were identified by large numbers of people in some of the groups. For example, the top six problems reported by black African respondents were: skills and training opportunities, anxiety and depression, money, self-esteem, sleep and sex. Unsurprisingly, people who had immigration problems tended to also report problems in practical areas such as skills and training, money, housing and work.

Moreover, a quarter or more of all respondents reported problems with mobility, housing and living conditions, household chores and self-care, and eating well.

Sources of help and support

As well as asking about the problems people had experienced, the survey also asked about whether the respondent believed that, with more help or support, their situation could be improved. Similarly, respondents were asked who or what had helped them with their problems over the past year. These results are likely to be useful to commissioners and service providers.

In a large number of areas, over half the people who had experienced problems had not received any help with that problem. This was the case for problems with sleep, self-esteem, training and skills, eating and drinking, household chores, family relationships, money and work. What’s more, three-quarters of those having problems with sex, friendship or alcohol and drugs received no help.

When help was provided, the findings highlight the essential role of informal sources of help and support. For example, friends were among the most commonly called on source of support for problems with mobility, family relationships, friendships, partners, children, work, housing, training and skills, and household chores. Partners, spouses, family and parents also provided support to many.

Counselling and psychology services were frequently cited for their help with anxiety and depression, self-esteem, alcohol and drugs, sexual problems, partner relationships, family relationships, and friendships. HIV clinics were important sources of help for many of the same issues, as well as for problems with eating and drinking.

HIV organisations provided help in a great many areas, especially immigration, housing, money and friendships.

GP practices and prescribed medications were often mentioned for their help with sleep problems, anxiety and depression.

Councils and social services departments were mentioned for their help with housing, but less so for other areas. Moreover, in a number of areas, especially work problems and training and skills, relatively few sources of help were mentioned.

The researchers believe that the range of needs highlighted in the report reveal significant challenges for service commissioners and providers. Moreover, they note that: “Changes in service provision over the last five years have been driven by funding pressures rather than an understanding of the changing needs of people with HIV. Such pressures remain, but a clearer assessment of needs will hopefully improve our capacity to plan and fund appropriate services.”