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  • HIV Disclosure Dilemmas

    September 19th, 2014

     

    by Janet Madsen  |  @janet_madsen

    HIV has come a long way in treatment and overall health, but the social challenge of disclosure is still a tough step post diagnosis. Yesterday I met with Dr. Reka Gustafson about a new series we are developing on disclosure. We’re working in partnership with Oak Tree Clinic and Positive Living BC.

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    Dr. Gustafson gave me input on one of the pieces of the series- How Service Providers Can Support Positive People. Delivering a positive HIV diagnosis can be tough on the doctor as well as the patient. Doctors want to know what kind of support people need when they’re thinking about disclosure, and this resource will talk about what people go through. She talked about strong doctor-patient relationships, helping people to get as healthy as they can, and caring for community.

    It was a great meeting, and builds on a number of great meetings I’ve had while Erin and I have been working on the series. A group of members planted the seed, and have been involved in helping with outlines and drafts of each resource. Right now we’re in the process of gathering more review from positive women, Oak Tree Clinic staff and others in the community and a lawyer’s perspective on the legal information.

    The series includes disclosure to sex partners; disclosure to family and children; a piece for youth who have lived with HIV their whole lives or are newly diagnosed; a resource for partners of people who have disclosed to them, and the resource for doctors and other service providers. It will be available in hard copy and on our websites.

    We’re excited to expand on what we have and support women and their communities. Watch for my big whoop when we publish online and in print! If you have disclosure questions that aren’t answered by our current information, do give us a call. Support workers are happy to work with you on feeling strong as you move forward. You don’t have to be alone.

     

    Photo: iStock 

    Mothers supporting mothers

    September 12th, 2014

    by Erin Seatter | @erinlynds

    A forum focused on strengthening care and support for mothers living with HIV took place on September 8, 2014, in Vancouver. Supporting Mothers in Ways that Work featured a presentation by Dr. Saara Greene from McMaster University, who shared findings from the HIV Mothering Study in Ontario. Dr. Greene discussed the surveillance that positive women come under during pregnancy, childbirth, infant feeding, and child raising. In the face of scrutiny, objectification, and stigmatization from medical professionals and social workers, positive women feel they must defend their right to become mothers.

    Positive Women’s Network was invited to respond to Dr. Greene’s presentation. The following remarks were delivered by Erin Seatter.

    mothering with HIV pinThank you Saara for sharing this important work with us. This study confirms what a lot of us know and shows that women living with HIV are well placed to share knowledge with and support other women living with HIV. Where I work, at Positive Women’s Network, this is what we see all the time.

    Positive Women’s Network is Canada’s longest-running HIV organization for women. It was established in 1991 as a collaboration between women with HIV and women without, and we support women living with HIV across British Columbia.

    Most importantly, PWN provides a space for women with HIV to connect with one another. When women stop by our kitchen to take advantage of our drop-in space, or to share lunch with other women, or when they go on one of PWN’s weekend wellness retreats, they have a chance to meet and talk with each other.

    The women share survival tips among themselves. Positive women lead the discussions, not PWN staff, because the women are the authorities on their lives. Positive women are the experts. When it comes to pregnancy, childbirth, breastfeeding, child care, women deal with these situations using their creativity and their experiences to come up with strategies.

    There is great diversity among women who gather at PWN, because it’s HIV that initially brings them together. This means women have different backgrounds, different knowledge, different cultural experiences. It also means that the array of strategies they come up with is wider. A woman can’t get that kind of variety of input and ideas by sitting in an office with a support worker.

    At PWN we also see the depth of non-judgmental listening that positive women engage in at these times, which allows them to really open up with one another. Their challenges are received with openness and compassion.

    This is one of the reasons that PWN has begun a series of peer support trainings for women. Peer support is the most significant kind of support that women can receive.

    As well, PWN is a safe space for women. It’s outside the health care system, it’s not part of the Ministry for Children and Family Development, we’re not patrolling borders or citizenship, so women don’t feel under surveillance at PWN in the way they sometimes do in other circumstances. They feel comfortable sharing personal stories, whether they’ve used drugs recently, they’re being investigated by a state agency that often doesn’t understand HIV, or they’re worried about losing custody of a child. There’s honesty in the sharing that happens.

    As years and decades pass, relationships build up between the women, and between the women and PWN staff. Histories build up. We see women navigate different challenges over time; at times they stumble, at times they rise. But at PWN, we always cheer women on.