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Findings from the Study: Representations and Experiences of HIV-positive Women on the Journey to Motherhood in Canada

September 2013

Introduction

In June, 2012, I began recruiting for my Master's thesis research in the Department of Sociology at the University of Calgary. I have recently completed my Master's research, formally titled "Constructed Meanings of Motherhood: Reproductive Experiences of HIV-positive Women in Canada" and am providing you with this report that summarizes the key research findings. Thank you again for your interest and participation in this research. Without you, this project would not have been possible.

Purpose of the Study:

For my Master's thesis research, I explored how HIV-positive women experience the decision to have a child, and experience being pregnant in Canada. I was interested in how HIV-positive women thought and felt about having children. I was also interested in how they experienced being mothers.

Recruitment and Interviews:

I recruited HIV-positive women across Canada through AIDS Service Organizations (ASOs), healthcare professionals, clinics, word of mouth and social media. After nine months, I interviewed ten women. The interviews I conducted took place by phone, Skype or in person. The types of questions I asked during the interviews, for example, were questions about women's experiences of pregnancy, what motherhood meant to them, if they accessed information and whether or not they had received support.

Who were the Women?:

The women that I interviewed had different experiences and social backgrounds. This included:

Education: Some women had not completed high school and others had completed university diplomas and degrees.

Marital Status: The majority of these women identified their marital status as being single, while one was common law and one was married.

Age: The average age of the women I interviewed was 36.

Ethnicity: These women were ethnically diverse. Two women identified as Metis, five identified as White and three identified as Black.

Pregnancy Status: At the time that I interviewed these women, one woman was thinking about becoming pregnant, two women were pregnant and seven women had had children already.

HIV Status of children: All but one of the women in my sample had given birth to HIV-negative babies. The baby who was born HIV-positive was tested HIV-negative in early childhood and has since maintained this status.

Key Findings from the Interviews:

Because of their diverse social backgrounds and experiences, no two interviews were alike. This revealed the key finding of the study: HIV-positive women who choose to mother have diverse experiences; no such person as the "HIV-positive mother" exists . While there were many differences, there were also similarities that were reflective of most of the women interviewed. Both these similarities and differences revealed that there were many different meanings, understandings and experiences of mothering and motherhood. I describe these below.

1. Most of the women I interviewed told me that they thought through the decision to become a mother . This included: finding information about HIV and pregnancy, learning about the risks associated with mother-to-child transmission of HIV, talking with healthcare providers and ASO workers, talking with other HIV-positive women about their experiences and finding a partner to have children with. The reasons why these women wanted to have children also were different and included: a partner's desire to have a child, desire for someone to love, fear of dying without having a child and knowing about the ways to reduce the risk of mother-to-child-transmission of HIV.

2. Women's pregnancy experiences were different. Many of the women interviewed emphasized that their pregnancies were normal and no different from HIV-negative women's pregnancies. They generally told me they were in good health during their pregnancies and that they saw a doctor regularly. I found that while some of the women felt anxious and afraid during their pregnancies because they were worried about the risks associated with mother-to-child-transmission of HIV, most were optimistic their children would be born HIV-negative and were excited to meet their children. Also, many had positive experiences with healthcare providers who were described as reassuring and supportive.

3. Most of the women I interviewed discussed their mothering experiences and the meaning being a mother had , and they explained these differently. Being an HIV- positive woman and mother was often considered demanding and challenging on women's time and energy. For example, many had to balance work, childcare and their health. Despite these challenges, each of the women I interviewed considered being a mother to be valuable. They described being a mom as providing: a source of love, someone to give love to, a friend and meaning in life.

4. In the majority of interviews, the women considered if they had been negatively judged (stigmatized) because of their HIV status, and considered how the effects of stigma has affected their lives. Some of the women informed me that they had been stigmatized for choosing to become mothers. Others were aware that they might be stigmatized if they revealed their HIV status, or that their children might be stigmatized as well. As a result, these women often carefully considered who they told their HIV status to. While stigma was considered to have negative effects, some of the women interviewed resisted the negative effects of stigma by advocating for themselves, seeking information, becoming involved in the HIV community and by finding support. These women were therefore not victims of stigma, but were often resilient to stigma's effects.

Research Implications:

Many of the women I interviewed acknowledged that having support from other HIV-positive women who had become mothers was invaluable. These women said that this was beneficial because they were able to learn from other women's experiences, seek advice and receive support, empathy and understanding. For example:

So I have really taken to like social networking, and you know, trying to meet women internationally, that you know, I can at least say we have something in common, that we can talk about. [Online, we talk about] everything you know from pregnancy to medications, to just you know, I feel horrible today, or, has this ever happened to you or, you know, just life experiences mostly I would say. And just support you know, having a, having a safe space where you can go and connect with other women (Ainsley, 27 years old, 3 children).

Other women suggested that while they had not received support from other HIV-positive women on their journey to motherhood, they wish that they had. For example:

I kinda wish that there was more support for HIV positive people, like more social support (Emily, 30 years old, 2 children).

Based on this research, I suggest that ASOs across Canada develop support groups on site for HIV-positive women. Or, ASOs could develop, or tap into existing social networks in order to connect HIV-positive women across Canada, such as through social media. By working to connect HIV-positive women with their peers, ASOs would be providing needed support to HIV-positive women. As one woman I interviewed reflected:

I don't know [women] are just so segregated. And, don't come together as it is.I would like to.either start a woman's AIDS service organization, or, eventually maybe run one and be an executive director. [It would be] a safe place where women can come and meet and get resources (TJ, 34 years old, 1 child).

Contact Information:
If you have any questions, would like more information, or would like clarifications about the research, please feel free to contact me, Sonja Schuetz, by email: sschuetz@ucalgary.ca or by phone 403-542-5257.

"Reproduced with permission - Sonja Schuetz"


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