HIV Stigma Blamed for Clinic Drop Out
posted: 13/08/2009
People who feel stigmatised because they have HIV don’t go to their clinic as often as they should, American researchers have found. This reinforces George House Trust's own findings on the hundreds of people in NW England who have stopped using HIV clinics, or who have never used any clinic in the NW since diagnosis.
The next issue of Insight has a detailed investigation into what is going on and what needs to be done. It will be published on Thursday 20 August.
3 out of 4 have poor clinic attendance, and 2 out of 5 don't take treatment properly
The USA study showed that 77% of people had poor access to healthcare and 43% didn’t take their HIV treatment properly. People who reported feeling stigmatised were much less likely to visit their HIV clinic regularly than people who did not report feelings of stigma. The research also showed that poor mental health was associated with not taking HIV treatment properly.
Internalised stigma leads to fall in clinic use
“Our study provides important information about the association between internalized stigma and self-reported access to medical care”, comment the investigators.
There have been dramatic improvements in HIV treatment, and now the life outlook for many people living with HIV is considered almost normal. Nevertheless, HIV remains a stigmatised illness and this threatens the emotional, mental and physical health of all people living with HIV.
Stigma is a complex idea, but it is basically the shaming and blaming that is heaped on anyone who is thought to have broken the values and social norms of their community or wider society. Becoming HIV positive is socially disapproved of - like getting other sexually transmitted infections is disapproved of, but far worse.
Internalising the shame and blame
Most behaviour that society disapproves of leads to people absorbing and adopting some of the stigma - we come to believe some, or all of it, is true about us. We are surrounded by HIV stigma and it is hard to resist and feel good about yourself. This is internalised stigma and it is damaging to mental and physical health. Internalised HIV stigma is a bit like how some people who are gay (or female, or of an ethnic minority background, or with a disability etc.) come to self-hate themselves and believe the negative attitudes about gay (female, ethnic minority, disabled, etc) people that surround them.
What they studied and found
Investigators from Los Angeles (LA) thought that internalised HIV stigma would be associated with three key aspects of HIV care:
- using HIV clinics
- regularly going to clinics for HIV care
- taking HIV treatment properly - adherence.
202 people were surveyed from LA HIV clinics and support services. The research was undertaken in 2007.
Most (56%) were women and an equal proportion African American. The mean age was 43 years and 31% were gay men.
Measuring internalised HIV stigma - 1 in 3 endure significant stigma
Internalised stigma was assessed using a questionnaire which scored people’s responses on a scale of 0 to 100. The overall score was 41, suggesting that well over a third of participants had significant internalised HIV-associated stigma.
Overall, 77% of individuals reported having poor access to healthcare, 11% having no regular source of HIV care, and 43% poor adherence to their HIV treatment.
The investigators’ first set of statistical analyses showed that individuals reporting a high level of internalised stigma were much more likely to report poor access to HIV care, to lack a regular source of HIV care, and to have low levels of adherence to their HIV medication (the detailed statistics are in the journal article).
Internalised HIV stigma - four times more people drop out of HIV care
However, when the investigators allowed for other possible explanations, they found that internalised stigma was only really linked with poor access to HIV care. They also found that poor mental health, rather than internalised stigma itself, explained people not taking their HIV drugs properly.
1 in 3 report high levels of stigma
“Approximately one-third of participants reported experiencing high levels of internalized HIV stigma”, comment the investigators, adding “we found that respondents experiencing high levels of stigma had over four times the odds of reporting poor access to care.”
They note that their study was limited by its design and that more studies are needed to better understand what the relationship is between stigma and using HIV clinics.
“Such studies could enable us to examine changes in stigma and its contribution to health care and health outcomes throughout the disease trajectory”, conclude the researchers.
Stigma and mental health booklets
NAM produces two useful booklets on HIV & Stigma, and HIV & Mental Health. They are available free to people with HIV in the UK , as well as on their website, at George House Trust, and through HIV clinics.
Reference - full article is available free, either as a pdf file, or on a web page.
Sayles JN et al. The association of stigma with self-reported access to medical care and antiretroviral therapy adherence in persons living with HIV/AIDS (pdf). J Gen Intern Med (webpage online edition), 2009.
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