HIV Spotlight on Center on Caring for the Newly Diagnosed Patient


Unraveling the Impact of Trauma on People With HIV -- and Their Care Providers

An Interview With Edward Machtinger, M.D.

July 21, 2014

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Startlingly Disproportionate Rates of Trauma and PTSD Among Women Living With HIV

Trauma-Informed Primary Care

The next study we did was a meta-analysis of rates of trauma and PTSD [post-traumatic stress disorder] among women and girls across the United States. In our individual population, approximately 18% reported recent abuse, and approximately 70% reported lifelong abuse. We wanted to know whether those high rates of recent and past trauma were seen in HIV-positive women across the country, or whether that was something very specific to our population. In this meta-analysis, we looked at 29 studies with a combined population of 5,930 individuals, and found really startlingly disproportionate rates of trauma and PTSD among women living with HIV, compared even to the very high rates in the general population of women.

For example, approximately 55% of women living with HIV have experienced intimate partner violence, compared to the already high rates of 24.8% in the general population. Over 60% of women living with HIV have been sexually abused at some point in their lifetime -- five times the national rate of 12%. And, not surprisingly, 30% of women living with HIV have recent or current symptoms of PTSD, which is six times the national rate of 5.2%.

So, the high rates of trauma and PTSD, and their consequences –- which include depression and substance abuse -– that we were seeing locally were representative of what was being seen across the country among women living with HIV.

And our experience in clinic confirms that. Very few of our patients are working. Very few have supportive networks of close friends. Very few are really thriving and achieving the life goals that they have set out for themselves. And so I think that the treatment cascade doesn't capture the actual challenges to health and well-being that are faced by women and girls -- and actually all individuals -- living with HIV.


Bearing Witness: The Impact of Trauma -- Historical or Vicarious -- on Providers

You've written and talked about how trauma-informed care is also helpful to providers who have experienced trauma and who may experience vicarious trauma while working with traumatized patients.

Is there data on that, either that other people have done or that you've collected?

This is a learning process for me, too, honestly. There are people that I'm working with who have been at this for 25 years, and I've been at this for about four. I previously was primarily a clinician, administrative practitioner and leader for poverty/AIDS, but not a trauma expert. I've only become more of a trauma expert recently.

"Many providers have trauma histories themselves. And so dealing with trauma just raises a lot of feelings for them; just even asking about it."

There are two elements of it. One is that -- and this is a subtle distinction -- many providers have trauma histories themselves. And so dealing with trauma just raises a lot of feelings for them; just even asking about it.

That's separate from something called vicarious trauma, which is when you're talking with a patient who comes in and reports just being raped, and you ask her to describe what happened and she describes in detail being kidnapped and the details of exactly what happened in her rape. It's the experience of the terror and your reaction to her trauma -- that's considered vicarious trauma. And that is probably even worse if you've had a trauma history, but is a little bit different than being just triggered by the issue because you have a trauma history.

When I give talks, just starting to talk about this issue, for people who have trauma histories, it is a trigger. Doing the work in depth, and working with people who are reporting recent rapes, and you're kind of holding that, and shouldering that, that is more considered what they call vicarious trauma.

There's a lot of stuff out there, courses and handbooks, on how to heal and prevent vicarious trauma. There's a woman named Maxine Harris who runs an organization called Community Connections, who's on our strategy group in Washington, D.C.; she talks a lot about vicarious trauma. Leigh Kimberg here at UCSF and the San Francisco Department of Public Health, also in our strategy group, runs an organization called LEAP-SF. On her website, she has a lot of resources, like how to start screening for intimate partner violence in clinic, simple screening tools, information about safety planning, resources to deal with vicarious trauma and much more. It is a really great destination to find most of the things you would need to learn about screening for trauma in primary care settings.

But in terms of data, most of what I know about vicarious trauma has to do, honestly, with my own personal experience with some stories. You know, just getting through to us on a level that is hard to handle emotionally.

Environment, Screening and Response: Trauma-Informed Primary Care

After these data were gathered, you worked with others to host the Strategy Meeting on Trauma-Informed Primary Care for U.S. Women Living with HIV. What did this group come up with?

"There was no model of trauma-informed primary care that integrated a response to recent and lifelong abuse that had been implemented or evaluated."

Once we realized that trauma was playing such a large role in the health and well-being of our patients, we looked for a model that would guide our practice to most effectively respond to it. We were surprised that, despite a large amount of data associating trauma with poor health outcomes amongst people living with HIV, and in many other disease states, there was no model of trauma-informed primary care that integrated a response to recent and lifelong abuse that had been implemented or evaluated.

As a result, we partnered with the Positive Women's Network - USA, which is the largest advocacy organization in the country of women living with HIV, to convene a strategy meeting in August of 2013 at the Aspen Institute in Washington, D.C., that included trauma experts and leaders from the government, military, academia, community organizations and women living with HIV to identify an evidence-based model of trauma-informed primary care. The group continued its work after its two-day meeting and, over the past six months, has developed a model of trauma-informed primary care to help guide implementation and evaluation studies in clinics just like ours, who recognize the need for a trauma-informed approach, but needed some guidance about how to start and what the elements would be.

What we identified was that a trauma-informed primary care clinic has three core components -- environment, screening and response -- and rests on a robust foundation. More specifically, a trauma-informed environment is calm, safe and empowering for both patients and staff, and educates both providers and patients about the impact of trauma on health outcomes. Just as importantly, the environment supports providers, many of whom have had experiences of trauma themselves, to handle being triggered by the issue of trauma, as well as the vicarious trauma that they may experience when hearing the details of their patients' abuse or histories of violence.

"A trauma-informed environment is calm, safe and empowering for both patients and staff."

A trauma-informed primary care clinic screens for both recent and lifelong abuse, as well as the consequences of lifelong abuse, including PTSD, depression and substance abuse, and does so in a way that is universal and respects the choices and autonomy of the patients. I think it's important to recognize that many patients who are in abusive relationships love their partners, and the choice about how to respond to a violent situation rests with them; our obligation is to be there to support them and provide them with as many options for safety and support as possible.

Finally, a trauma-informed primary care clinic includes on-site or community-based interventions that respond to both recent abuse and lifelong trauma. Responses to recent abuse may include a danger assessment, safety planning and referrals to community-based domestic violence organizations and/or shelters. Responses to lifelong abuse would include on-site or referrals to interventions that treat PTSD or the combination of PTSD with substance abuse, or a number of other evidence-based interventions for the consequences of lifelong abuse. There are actually many proven interventions to deal with PTSD and lifelong abuse. The Substance Abuse and Mental Health Services Agency (SAMHSA) has a website that describes many of these proven interventions.

This whole model rests on a foundation that includes clinic champions, trauma-informed values and robust partnerships with community organizations, because any fundamental change in a clinic or in primary care really can't be done in isolation and will need to be done with leaders who genuinely believe that this is important, and with community partners who have expertise in this area.

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Reader Comments:

Comment by: Dilnoz (Tashkent, Uzbekistan) Mon., Jun. 1, 2015 at 6:43 pm UTC
Greetings dear.. my little sister she is 12 years old and she go t infected by AIDS/HIV in the local medical center either by a needle, or either by a dental tool around 2 years ago.Right now she is taking epivir, reterovir, kaletra medicines, and besides that , she is taking one white medicine against tuberculosis every single day we don't know the name of that medicine cause it is given by local tuberculosis center and now my brother is going to USA to New York. I heard that the best medication is USA which prolongs the health of a HIV/AIDS infected person. So as my brother is going now to NEw York What kind of medications should he buy which are not harmful and best useful for my little sister HIV/AIDS infected sister to prolong her life?
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Comment by: Dianne Nyoni (Sydney, Australia) Sun., Jan. 4, 2015 at 8:39 pm UTC
Thankyou for this detailed work, trauma is indeed prevalent in positive community and I believe a contributing factor. I hope we can all adopt the approach used and demonstrated in this article to approach HIV with a wholistic trauma informed care we can support all who are struggling with a violent history as well as those subjected to trauma daily whilst living with HIV.
Again thankyou as a HIV positive woman.
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Comment by: Teresa (Floral City, FL) Sat., Jan. 3, 2015 at 9:10 pm UTC
Excellent piece, this is me, but y'all put it in better words then I can.
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Comment by: Bob (Los Angeles) Thu., Aug. 21, 2014 at 7:47 pm UTC
I think you are missing the forest because of all of the trees. I believe everyone diagnosed with HIV is recovering from trauma. You seem to be working with individuals exposed to multiple levels of trauma, however I would wish you cast a wider net. There is a huge community of people struggling with how to cope with a disease they won't die from but will forever be judged for. These people need help and it's not there. Keep up the great work!
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Replies to this comment:
Comment by: Edward Machtinger (San Francisco) Sun., Sep. 14, 2014 at 6:44 pm UTC
Great point Bob! I think that the stigma of HIV touches all who are living with it. The stigma of HIV often leads to profound isolation, depression, addiction, and other health problems. One of my greatest hopes is to have clinics that serve people living with HIV have evidence-based services to overcome stigma. One stigma related intervention that we just studied is an intervention (called the Medea Project) that helps women living with HIV develop the confidence and skills to safely and voluntarily publicly disclose their HIV status through dance and theater. Notably, half of those who participated reported leaving or avoiding abusive relationships because they had reduced isolation, made real friends to support them, and overcame many of the debilitating effects of stigma. The people who participated were able to start seeing themselves as much more than just HIV positive and gained a voice to express their beliefs and goals. To your point, helping people cope with HIV in general (in this case by "coming out" and reducing isolation) is key to helping people break the cycle of violence, avoid re-victimization, and overcome stigma. Thanks again for your comment.

Link to tje full article about the disclosure intervention:

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