A “Wicked Problem”

WARNING: Some readers may find this content distressing.

In 2009, doctors at the Southern Alberta HIV Clinic made a tragic discovery that would transform how they approached HIV care. “We were reviewing the performance of our HIV program, and it was excellent,” recalls clinic director John Gill. A large number of their clients were doing well, with high T-cell counts, undetectable viral loads and good overall health. But one case stood out: a patient who had been killed at home by their partner. “On paper, they had been a medical success,” Gill explains. “But while focusing on their medical needs, we missed asking about their life-threatening home environment.” As a person living with HIV, the client had been at a greater risk of intimate partner violence (IPV).

IPV is also known as domestic violence or family violence. IPV can take different forms: these range from physical abuse and sexual assault to emotional abuse like insults, threats and being possessive or jealous. After their client’s death, Gill and his team began researching the link between HIV and domestic violence to help patients who were dealing with both. They brought in social workers who specialized in IPV. They also started asking patients about violence at home to connect them with emergency housing and counselling if they needed it. “Out of respect for this person,” Gill says, “we needed to prevent this from happening to anyone else.”

“IPV is about power”

IPV is “a form of violence that can happen in all types of relationships: heterosexual, queer, two-spirit and otherwise,” explains Karen Wood, Director of Research and Education for Solutions to Violence and Abuse (RESOLVE) at the University of Saskatchewan. However, someone’s gender can put them at a higher risk. “I use the term ‘gendered violence’ because gender is about power, and IPV is about power,” Wood says. As a group with less social and economic power than men, women are at a much higher risk for IPV. One American survey found that a quarter of women had suffered severe injury from an intimate partner, compared with one in nine men.

Some marginalized groups—like women, 2SLGBTQ people, racialized people and people living in poverty—are at a higher risk of IPV. They also face more severe outcomes from this violence, like HIV transmission. HIV and family violence are closely linked: violence at home raises someone’s risk for HIV, and living with HIV can also put someone at risk for violence. Research from the Southern Alberta HIV Clinic supports this. Gill’s team found that just over a third of their clients had experienced IPV, and people who were Indigenous, 2SLGBTQ or both were massively overrepresented. Owing to systemic racism and trauma, Indigenous people face higher rates of poverty, mental health issues and substance use—these all put someone at higher risk of family violence. As with other groups, gender affects this risk. “Indigenous women in Canada are three times more likely to experience violence of all kinds than other women, and IPV in particular,” explains Pamela Downe, Professor of Anthropology at the University of Saskatchewan. They are also at risk of more severe injuries from IPV than non-Indigenous women.

IPV and Indigenous women

In the 1980s, Indigenous women made up 9% of female homicide victims in Canada. By 2015, they made up a quarter. “The majority of these murders occurred in domestic settings,” says Downe. HIV increases the risk of violence for Indigenous women, and vice versa. This compounds the burden of HIV that Indigenous women already bear: the HIV rate among Indigenous people is double that of the non-Indigenous population, and a disproportionate number of new infections are among Indigenous women.

Why are Indigenous women living with HIV at a higher risk of IPV? “One simple answer is poverty,” Downe explains. “Because of structural racism, Indigenous women are more likely to live in poverty. And poverty limits people’s abilities to move quickly into a hotel, or to access medication, or even to access a vehicle to drive to a healthcare facility.” Racism from police and the court system can also deter women from reporting IPV to the police. Indigenous mothers are especially vulnerable, as they are already at a high risk of having their children taken by child welfare services. “Subjecting children to domestic violence is considered one form of child abuse by the courts,” Downe says. An Indigenous woman reporting IPV to police might fear losing custody of her children. She could also be charged with child abuse if her children have witnessed her being assaulted.

Indigenous women living with HIV who also face violence find themselves in what sociologists call a “wicked problem,” says Downe. A wicked problem is a situation that has no easy solution because all parts of the problem are connected. For HIV-positive Indigenous women, the worse the violence gets, the harder it becomes to manage their HIV. This means they have fewer choices for how to leave. This wicked problem also affects other marginalized groups who face higher rates of both HIV and IPV, like 2SLGBTQ people. Their HIV status can make it difficult to seek help for violence, and violent home situations make it harder to get proper HIV care. The discrimination these groups face makes it hard to seek help from both the justice system and the medical system. “It’s a problem that becomes increasingly difficult to solve,” Downe explains.

HIV and IPV

HIV and IPV are linked because they both affect marginalized groups. They’re also linked because HIV is commonly transmitted through sex and drug use. These can factor into abusive relationships: for example, a violent partner might force someone into sex without condoms, leading to HIV transmission. They could stop someone from starting pre-exposure prophylaxis (PrEP) or force them to stop taking it. They could also pressure someone into using drugs or using methods the person is not comfortable with, like injecting. If someone is forced to share or reuse drug equipment, this can also raise their risk of HIV.

People living with HIV can face higher rates of physical violence from their partners. HIV stigma can then isolate them; for example, someone living with HIV may stay with a violent partner because they fear they won’t find another relationship. HIV also affects what type of violence someone might experience, and how severe it is. Research from the United States shows that an HIV diagnosis raises someone’s risk for physical violence and that this violence is often related to HIV. Another study found that many women fear violence when disclosing their HIV status, and 4% had been physically abused when they did. Even if someone isn’t physically violent, they can weaponize their partner’s HIV for emotional abuse: for example, they could insult or degrade their partner over their HIV status or use HIV to blackmail them. This is because, in Canada, not disclosing your status before sex can be a criminal offence. An abuser may threaten to tell authorities their partner did not disclose their HIV status, even if this is not true, putting their partner at risk for criminal charges. People may then avoid reporting violence to the police because they fear being charged.

Predicting health outcomes

After the Southern Alberta HIV Clinic began screening new patients for domestic violence, staff made another important discovery. They knew that people with HIV were at higher risk for IPV, but they also found that IPV put clients at higher risk for poor health outcomes. “We were able to see that IPV was a major predictor of whether or not someone would continue taking HIV treatment,” says Gill. Violence at home also made it less likely that someone would attend their appointments and follow-up visits. This is consistent with the power dynamic of abusive relationships, where a violent partner might stop someone getting their medication by withholding money or access to a car.

Gill explains that if a client is experiencing IPV, they are more likely to be hospitalized and their HIV is more likely to progress to AIDS. In 2021, staff reviewed 10 years of data from the clinic and found that people facing IPV had an almost 50% higher rate of mortality, after adjusting for variables like age. This affirmed that the clinic was on the right track by screening patients for IPV in their first appointments. “Screening offers the ability to identify those at risk for poor outcomes, take action and reduce the effects of IPV,” Gill says.

A road to progress

For Gill, finding a way to improve outcomes for people living with HIV who are also facing IPV has been as challenging as it is rewarding. One of the most important insights he’s gained is the importance of trust, which can be hard to build with patients who have experienced violence. “We had to ask,” he says. “Clients wouldn’t talk to us unless we asked—there is so much shame and stigma involved [in IPV]. For effective HIV care you have to establish trust between the care provider and the client,” he explains. “You have to explain the nature of the disease, the nature of the treatment. The patient must experience a compassionate and safe environment.”

Once these clients establish trust with their providers, they’re in an excellent position to receive help. “An HIV clinic is actually a good place for people who are experiencing IPV to disclose,” Gill explains. “The repetitive nature of the visits are a great way to build up trust.” From there, patients at the Southern Alberta HIV Clinic can access in-house counselling for IPV or referrals to out-of-house services like emergency housing. The clinic employs three social workers who refer patients to local shelters that are sensitive to HIV issues. “We’ve had several situations where we could not immediately send someone home,” he recalls. “We were able to get them into safe housing.”

Research shows that HIV clinics can be good places to screen for IPV. The Southern Alberta HIV Clinic’s study found that of 158 patients, only 22% had been asked about IPV before in a healthcare setting. The authors recommended that all HIV clinics should screen for IPV, and this was echoed by their clients. “Please ask everyone routinely about their safety at home at every visit,” one client advised. “We will be honest with you but due to shame (and uncertainty that you even want to hear) we will not [disclose IPV] in a routine medical visit.” Clients also said it was important that referral services like counselling are easy to access. Of those who disclosed violence in the study, a quarter were connected to IPV supports after screening—which may have saved their lives.

What next?

There’s still a long way to go towards improving outcomes for people who are living with HIV and also facing violence. Gill explains that more research is needed to define what the risk factors for IPV are, and what the outcomes of IPV for clients could be. This will help service providers intervene at the right time and with the right tools. He also points out that researchers can have trouble getting funding for these programs, because they serve very marginalized and misunderstood groups.

Overall, progress will depend on tackling the root causes of marginalization and violence. Policies that address racism and poverty will have a tremendous impact on people living with HIV who struggle to access care or are scared to seek help for IPV. Downe explains that we must also address the stigma that surrounds HIV and IPV. For example, education campaigns could dispel common myths about IPV. They could also share the message that an undetectable viral load is untransmittable (“U=U”), meaning someone can’t pass on HIV during sex. The less stigma there is around both HIV and IPV, the less likely it is that people will face discrimination from a care provider.

Most importantly, policies that strengthen vulnerable communities, like Indigenous women or 2SLGBTQ people, can make it easier for people to help others who are struggling. “We need to stop looking [at IPV] as about the individual client and think more collectively,” explains Downe. “What can we do for an entire family, an entire community? What if we started putting resources into housing for collectives—not only the patient, but also their children, their aunties, their trusted friends?” Community-based care has an impact that spreads outwards, improving outcomes for everyone. “There is strength in numbers,” she says.

Alexandra Kimball is a journalist and non-fiction writer based in Toronto. Her first book, The Seed: Infertility Is a Feminist Issue, was published in 2019 by Coach House Books.

If you are facing violence and need support, visit www.sheltersafe.ca