The SFU community project team, l-r: Margarite Sanchez, Sophie Patterson, Kath Webster, Valerie Nicholson, Allison Carter and Kate Salters. Angela Kaida is not pictured.

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Life and love after HIV

February 09, 2016
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By Diane Luckow

For more than 17.5 million women around the world living with HIV, including 16,600 in Canada, Valentine’s Day is not always about hearts and flowers.

Instead, for some, it’s yet another reminder that romantic relationships and healthy sexuality after HIV are huge challenges, despite the fact that people today who have HIV are not infectious while on medication, and have a normal life expectancy.

SFU study reveals sexual inactivity and dissatisfaction

So it’s not surprising that national survey results from a Simon Fraser University research group reveal high rates of sexual inactivity and dissatisfaction among women living with HIV in Canada, as well as a significantly lower quality of life.

SFU project to address HIV stigma, support sexual health and rights

But the research group is keen to change all that.

SFU health sciences PhD students Allison Carter, Sophie Patterson and Kate Salters have formed a project team to help normalize sex and intimacy for women living with HIV. The team also includes HIV activists Kath Webster, Valerie Nicholson and Margarite Sanchez, and SFU professor Angela Kaida, who holds the Canada Research Chair in Sexual and Reproductive Health.

“HIV remains highly stigmatized and criminalized in society, creating barriers to dating, disclosure and the pursuit of love,” says Carter.

“Our project is a research-based and community-driven initiative to support sexual health and rights among women living with HIV everywhere.”

Carter began her PhD in the Faculty of Health Sciences last September after working for the past five years as a research coordinator with CHIWOS (Canadian HIV Women’s Sexual and Reproductive Health Cohort Study), which is following 1,425 women in Canada living with HIV over time; one the largest studies of its kind in the world.

SFU study fills research gap

That’s where she learned that sexual health in its broadest sense is a huge priority for women with HIV, but that there was virtually no research available on the topic.

“Quantitative research in the HIV field has traditionally focused on sexual risk behaviours and understood relationships using single measures such as marital status,” says Carter.

For her PhD thesis research she is using survey data collected from women in CHIWOS to characterize their romantic and intimate relationships in a more holistic way. Then she’ll examine how those relationship patterns are connected to more positive, rewarding aspects of sexual health, such as pleasure and satisfaction.

Canadian women living with HIV can and do enjoy healthy sex lives

So far, she has discovered that while nearly half of women with HIV in Canada are not in a relationship, 22 per cent are in long-term happy and loving sexually active relationships characterized by high physical intimacy and high emotional closeness.

“A lot of women living with HIV can and do find happy relationships and enjoy healthy sex lives,” says Webster, study co-author and activist who has been living with HIV for 20 years.“That’s what we’re trying to support and promote through our research.”

New website to support women living with HIV who seek positive sexual relationships

The project team is also creating a website, www.lifeandloveafterhiv.ca that will combine scientific research with community action and advocacy. It will go live later this year.

Says Carter, “We aim to be the go-to source for positive research, information and support about sex and relationships after HIV.”

She has received doctoral funding from the Canadian Institutes of Health Research, and is affiliated with the Epidemiology and Population Health Program at the BC Centre for Excellence in HIV/AIDS. A seed grant from the SFU Student Social Innovation Fund, a collaboration between RADIUS SFU and Embark, is supporting the website.