Introducing the first national Canadian study of people in serodiscordant relationships.
Marcus and David have been dating for three years. Marcus is HIV-positive and David is HIV-negative. David was worried when he told his parents that his new partner was HIV-positive but after they saw how happy Marcus makes him they have welcomed Marcus into their lives. At the same time, they still worry that their son may become infected.
Faith is living with HIV and her partner, Scott, is HIV-negative. Faith often finds herself having to educate Scott on what she has to do to manage her condition and Scott has had difficulty understanding because information changes quickly. They fight more often — about sex, about health —and about where they see their relationship going.
These are examples of two different types of relationships that involve HIV yet many other couples have their own, unique experiences. So it is hard to know what kinds of experiences are the most common for people in these kinds of relationships.
What researchers do know is that HIV-serodiscordant relationships— where one person has HIV and the other does not — are likely becoming increasingly common as rates of new HIV infections have stabilized and HIV-positive individuals are living longer lives.
In terms of how common these serodiscordant relationships actually are, Professor Calzavara, a leading expert in HIV at the University of Toronto, estimates that there are over 17,000 people in Canada living in HIV serodiscordant relationships today. Although that number is only an estimate one thing is clear: There are thousands of people in Canada in serodiscordant relationships.
Many diseases can bring stress to a relationship, but the impact of HIV is potentially unique because people in serodiscordant relationships can face the ongoing potential for HIV transmission between partners. They may also encounter social stigma, making it less likely that they will tell their family, friends, and health professionals about this part of their relationship. There have also been rapid changes in HIV technology that people in serodiscordant relationships must take into consideration.
Because scientists, policy-makers, and service providers know relatively little about how these factors affect people in serodiscordant relationships there is a lack of services available to them. For Scott in the example above, all the information that he had about HIV came through Faith; there were no organizations, support groups, or programs in his area that were directed towards him. If this had been different perhaps the burden of education would be taken off of Faith and their relationship might be that much happier.
"Surveys work best when you know what to ask but because we know so little about serodiscordant relationships these conversational interviews will allow us to discover new things about serodiscordance in Canada."
Finding out how many people in serodiscordant relationships are in a position similar to Faith and Scott, or David and Marcus, or who are in a position that is completely different from them, could therefore have huge implications for the lives and well-being of people across Canada.
Through extensive consultations with serodiscordant couples, service organizations, and health care providers Professor Calzavara and her collaborators have worked to respond to this need. Bringing together a team of community members, AIDS service organizations, and clinicians they have created the first national Canadian study of people in serodiscordant relationships.
This study, called Positive Plus One (in French, Positif Plus Un), is currently recruiting participants from all over Canada. The study results will inform health care professionals, service providers, policy makers, those living in serodiscordant relationships and society with the aim of improving current services and attitudes. You can take the online survey right now by clicking here for English and here for French.
Positive Plus One is interested in hearing from people in serodiscordant relationships from many different backgrounds – of all genders, ethnicities, sexual identities, and regions of the country. Anyone can participate, as long as they are over 18 years of age, live in Canada and lived in Canada for at least part of the relationship, speak English or French, and if the HIV-positive partner has disclosed their status to the HIV-negative partner. If the person is not currently in a serodiscordant relationship they can still participate if they were in one in the past 2 years.
Importantly, Professor Calzavara and her colleagues know that a survey is not enough to understand the lives of people in serodiscordant relationships. Surveys work best when you know what to ask but because we know so little about serodiscordant relationships these conversational interviews will allow us to discover new things about serodiscordance in Canada.
That’s why Positive Plus One also includes a more unstructured interview where people in serodiscordant relationships can speak more conversationally about their lives. At the end of the survey people can volunteer to take part in this interview. They can also invite their partner or friends to participate.
This last part was crucial for Professor Calzavara and the Positive Plus One team because in order for this study to be successful scholars and service providers are going to need to hear the voices of both people in a relationship, to get the perspectives of HIV-positive and HIV-negative persons. So ideally both partners would participate and both would have their say about what their relationship is like for them.
To ensure the privacy of all participants, Positive Plus One interviews each person separately and the team has taken strong data security precautions to ensure that peoples’ answers remain confidential. More detail is available on the study website.
If you are interested in participating, visit the study website at www.positiveplusone.ca (English) or http://www.positiveplusone.ca/fr/ (French), or call the study line at 1-888-740-1166. If you have any questions you can call the study line or email at
Because Positive Plus One’s team is composed of service providers, physicians, and academics your answers may help to shape what services are available and how they are provided to people in serodiscordant relationships in the future.
James Iveniuk is a post-doctoral researcher at the Dalla Lana School of Public Health, University of Toronto.