Too much pressure: the HIV in Mind survey

According to a survey recently conducted on our website, aidsmap.com, four out of five people with HIV have suffered from depression. Gus Cairns reports.

When we agreed to host a survey, HIV in Mind, sponsored by the drug company Boehringer Ingelheim and the consultancy Huntsworth Health last year, we knew we’d get results that should be of concern to healthcare workers. Other UK surveys such as What do you Need?¹ have found that people with HIV had very high rates of emotional problems.

We weren’t expecting how common they would prove to be, however. The survey showed that the vast majority – 87% of the sample – considered themselves to be suffering or have suffered from one of a list of pre-defined mental health problems.

By far the most common of these were depression, experienced by three-quarters of all respondents, and anxiety, suffered by two-thirds. Sixty per cent of all respondents had at some point had suicidal thoughts, and startlingly, 23% had actually attempted suicide at some time in the past, though – in one of the few positive findings – only a handful felt actively suicidal now.

These are even higher figures than reported from other surveys, and might be because people with mental health issues were more interested in answering it.

It was also asking people to self-diagnose. However, although the survey asked about respondents’ own view of their mental state, 88% of those with depression and three-quarters of those with anxiety problems had had their condition formally diagnosed by a doctor or psychiatrist.

The reason for these states of distress? Although bereavement, relationship break-up, rejection, stigma and poverty all played their part, the most common reasons cited for feeling depressed and/or anxious were loneliness and isolation.

This is despite the fact that half the respondents were in a relationship, and that most had disclosed their condition to family and friends. (In one intriguing finding, a high proportion said that disclosing to family and friends had contributed to depression and anxiety – while even more said not disclosing had.) It appears that for a lot of people with HIV, being ‘lonely in the crowd’ is a big issue.

The people

The survey was a relatively small one, answered by 318 people, so fine analysis of subgroups is not possible. A link to the 20-minute survey was put up on aidsmap between June and October last year.

Most of the people who replied were male (87%), white (86%) and gay (76%). Sixty-three per cent were employed; 21% said they were either unemployed or “could not work due to health issues”.

Half of them were in a relationship, including 7% married and 10% in a civil partnership. The mean age was 40, ranging from 18 to 70, with one in five respondents under 30. 

Although a quarter of the male respondents had had no sexual partners last year and a third only one, a sizeable majority (11%) had eleven or more partners. Two-thirds of the minority of female respondents had had no sexual partner last year, and none had more than one partner.

This was a quite recently diagnosed group. The majority of respondents had been diagnosed since 2000, and a quarter in the last two years (11% in 2009 alone). Three-quarters of them were on HIV treatment. Two-thirds had changed treatment at least once. By far the most common reason for changing treatment was drug side-effects: two-thirds said they’d changed for this reason, and 42% said drug side-effects had contributed to poor mental health. Much less important were treatment failure (19%), drug interactions (9%) and adherence problems (5%).

The conditions

Depression and/or anxiety were experienced by a large majority of the respondents. Other conditions people were asked if they had suffered from included post-traumatic stress disorder (PTSD). One in six respondents considered they had this, of whom less than half had a formal diagnosis. Fourteen per cent thought they had bipolar disorder (‘manic depression’) of whom half had been diagnosed; 11% said they self-harmed, of whom 64% had been diagnosed. Some people also had rarer conditions like schizophrenia.

People could self-diagnose with more than one condition and indeed the majority had two (41%) or more than two (27%) conditions. People with only one condition were more likely to see their condition as liveable with and less likely to have sought help.

For the most common conditions, patients related their depression or anxiety strongly to HIV diagnosis and even more strongly to starting treatment. For instance, a quarter of those with depression said they had had it before their diagnosis; just under a third said it was set off by diagnosis; and 45% said it didn’t start till they started treatment. Results for anxiety were the same.

Being diagnosed was cited as the most common contributor to mental ill-health by respondents, with 70% saying it had set off problems or made them worse. Forty-two per cent cited coping with side-effects as a contributor, sexual problems were also mentioned and, as we said above, there were contradictory results about whether disclosing or not disclosing was more stressful.

In fact only 6% of the group had told no-one at all about their HIV. Half had told close family and friends, and 15% had told ‘everyone’. People who said they’d told everyone were mainly in the older age group.

Quality of life and stressors

People were asked if they had experienced a number of stressful life situations and events and whether this was just in the past, or currently. These included loneliness, relationship break-up, bereavement, illness, discrimination, housing problems, violence, sexual abuse, drink and drugs, and immigration problems. Most of these issues were much more likely be experienced by people with a greater number of mental health problems.

Loneliness and isolation were by some way the most significant stressors, suffered by three-quarters of respondents, and even 35% of those with no mental health issues. People felt that loneliness and isolation were worse now than they had been in the past. Relationship breakdown and suicidal thoughts had been suffered by about 60% of respondents each, and bereavement by 40%. Worryingly, actual suicide attempts had been made by nearly a quarter of respondents, and even by 5% of those with no mental health issues.

But these attempts were mainly in the past: only 3% said they had attempted suicide recently.

The reason for these states of distress? The most common reasons for feeling depressed or anxious were loneliness and isolation.

Another worrying finding was that a third of respondents said they suffered from memory loss, and in most cases (26%) this was current, rather than in the past.

Some issues were more strongly associated with high mental ill-health scores than others. For instance loneliness was three times more likely to be experienced by people with four or more mental health problems than those with none, suicidal thoughts six times more, and suicide attempts 13 times more.

Seeking help

Most people had sought help or information about their mental health issues: only 8% had sought no help at all and another 7% had restricted it to non-personal methods such as internet research and information leaflets. Sixty per cent had sought out a counsellor, psychotherapist or psychiatrist, 55% had consulted their HIV physician and 50% their GP. Younger people tended not to talk to medical doctors about it, and very few under 30 had approached their GP.

When healthcare workers were approached, they referred patients to a counsellor or psychotherapist 60% of the time, prescribed medication such as antidepressants 54% of the time, and referred them to their mental health hospital team in 43% of cases. Eleven per cent of respondents said their healthcare worker had done nothing when they mentioned emotional problems.

In terms of commonly used resources, GPs were seen as amongst the least useful, with only half the respondents thinking their GP had helped. Counsellors and psychotherapists were the most useful, with 80% finding them useful. Sources of help used by fewer people that were helpful were HIV nurses and, for the 6% that used them, churches and religious resources. Mental health support groups were not felt to be useful, possibly because of stigma and minority issues.

Fifty-six per cent had done some internet research or sought out online support, of which roughly two-thirds each had used the Terrence Higgins Trust and aidsmap websites (aidsmap was favoured by older people), and one-third HIV i-Base. They had also used a variety of non-HIV-related sites.

Not surprisingly, 92% of respondents said more information and support on mental health was needed, especially information on how HIV may contribute to mental health problems and general information on how to cope with mental distress.

Although depression and anxiety are very common conditions, affecting respectively one in three and one in four of the general UK population at some point in their lives,² the rates revealed in this survey are far in excess of those seen in the general population. They remind us that we have a long way to go before HIV becomes something people take in their stride.