Researcher finds unintended consequence: women avoid healthcare settings for childbirth to avoid perception — or news — that they have HIV

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The word is out in the rural Nyanza Province of Kenya: Pregnant women with HIV should deliver their babies in health facilities that are equipped to deal with the complications they might face.

The result? Added to the cost, distance, and inconvenience of going to a health facility for prenatal care and delivery is this perception: If you go to a health facility, you likely have HIV, and that in turn means you’re probably promiscuous. Add to that a fear that getting prenatal care means getting tested for HIV, and having to bring bad news home, and you have a powerful disincentive that keeps women with and without HIV from getting life-saving medical care.

It is an unanticipated consequence with a boomerang trajectory – coming back to undermine the effort it is intended to build, according to University of Alabama researcher Dr. Janet Turan and her team, in an article in the August PLoS Medicine.

They looked at 1,777 women in a remote Kenyan province where 16 percent of women between the ages of 15 and 49 were living with HIV, and only a little more than 44 percent of women giving birth did so in a health facility. They found that the stain of being thought to have HIV as well as the burden of assumed guilt that women who do test positive face when they share the news with their husbands, is hurting child-bearing women whether they are HIV positive or not.

The authors say the culprit that counters the benefits of skilled care is stigma, and the discrimination that accompanies it. They say the information gleaned in Nyanza is likely to be applicable to other rural settings where most women in sub-Saharan Africa live. In addition, Turan led a team that examined literature revealing the impact of stigma and discrimination surrounding HIV on maternal healthcare and efforts to prevent parent to child HIV transmission around the world. They conclude that efforts to address HIV-related stigma in and out of health settings are needed, if efforts targeting maternal mortality and parent to child HIV transmission are to succeed.

“The campaigns are very well-intended,”  Turan told Science Speaks. But, she added, “When you put emphasis on certain health behaviors, you run the risk of that behavior becoming stigmatized.”

Another example, she added, is exclusive breastfeeding, which also, while advised for all women who can, has with the aid of successful communications campaigns, become associated with efforts to prevent HIV transmission.

Turan defines stigma as the perception of any kind of attributes or behaviors that can cause individuals to lose social value.

So how did we get from good health behaviors to loss of social value?

“Stigma surrounding HIV has been especially difficult for women,” Turan said, “especially, because of the strong link in people’s minds with immorality and promiscuity.”

That’s why, she added, stigma surrounding the disease has persisted, outlasting hopes that as treatment became available fear and myths surrounding HIV would fade. Support groups and education help, she said. But laws and policies giving recourse to individuals affected by discrimination also are necessary, she added. And,  she recommends that  funders  take responsibility for the messages their programs bring.

“When they’re funding PMTCT [Prevention of Mother to Child Transmission], they need to make sure that stigma reduction is built in,” she said. “Stigma is still a big barrier between women and health care. None of that is going to be effective if those issues are not addressed.

 

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