From Floods To Infertility: New Research from the Centres of Excellence for Women’s Health

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British Columbia Centre of Excellence for Women’s Health (BCCEWH)

Lesbian and Bisexual Women’s Health
In its commitment to focusing on the health needs of specific groups of women, particularly marginalized women, the BCCEWH has piloted three recent research projects on lesbian and bisexual women’s health.

The Lesbian and Bisexual Women’s Health Project, designed to raise awareness about the health needs of lesbian and bisexual women, and improve their access to quality health care, has produced three new resources. Caring for Lesbian Health: A Resource for Canadian Health Care Providers, Policy Makers and Planners is a revised national edition of a popular booklet originally published by the Province of British Columbia. The booklet reviews the legacy of homophobia and heterosexism within the health care system, identifies the unique health concerns of lesbian and bisexual women and describes ways to improve their access to quality health care.

Empower Yourself postcards address health issues important and specific to lesbian and bisexual women: parenting, maintaining healthy friendships, looking for a doctor and making healthy choices.

A Tip Sheet for Health Care Providers outlines how providers can improve health care for lesbian and bisexual women patients.

Out in the Cold: The Context of Lesbian Health in Northern British Columbia (by Lynda Anderson, Theresa Healy, Barbara Herringer, Barbara Isaac and Ty Perry) investigates lesbians’ experiences of the formal health care system in northern British Columbia by addressing three primary questions: How do lesbians describe their experiences of formal health care services? What barriers do they experience? And how do lesbians negotiate these barriers and address their health and wellness needs inside and outside of the formal health care system?

This qualitative study illuminates the impact that the anti-lesbian/anti-gay social climate of the north has on health care services. For lesbians living in this context, considerations of personal safety and personal freedom are intricately intertwined with health. Out in the Cold reveals the complexities and contradictions of this reality, and recommends changes needed in services and in the community to bring down barriers to health care for lesbians. Adding to the growing body of literature on lesbian health, this report documents a uniquely collaborative participatory action research process that blurred conventional boundaries between researcher and researched and has led to social action initiated by participants.

Making Choices/Taking Chances: Lesbian/Bi/Queer Women, Assisted Conception and Reproductive Health (by Jacquelyne Luce) focuses on queer women’s experiences of trying to get pregnant and/or become parents within the context of new developments in assisted reproductive technologies and lesbian, gay, bisexual, and transgender rights legislation. The researcher shows the complex ideas, expectations and experiences that inform lesbian/bi/queer women’s reproductive health and well being.

Based on ethnographic fieldwork conducted over almost two years, this paper is a narrative of the researcher’s own experiences as a queer woman doing research on other queer women and reproductive health, as well as an account and analysis of the stories of lesbian/bi/queer women who had tried or were planning to try to get pregnant. Fieldwork took place in a variety of geographical and cultural contexts throughout British Columbia, which prompted the researcher to address the effects homophobia and heterosexism have on this type of research and the methodological as well as the daily challenges faced by queer health researchers.

Apprehensions: Barriers to Treatment for Substance-Abusing Mothers
This study, by Nancy Poole and Barbara Isaac, interviewed women living in Vancouver and Prince George who were pregnant or mothers of children under 16, and who had problems with alcohol and/or other drugs. The researchers were careful to plan and conduct the study to look at how systems can better provide women-centred care, rather than from blaming the individual women.

The women identified key barriers to access to treatment for substance abuse as shame, fear of losing their children if they identified as needing treatment, fear of encountering prejudice because of being mothers or pregnant and having substance abuse problems, feelings of depression and low selfesteem, believing they could handle the problem without treatment, lack of information about treatment available, and waiting lists for treatment.

The women identified five key factors that helped them use treatment facilities—the support provided by a wide range of professionals, supportive family members, friends, and people they met in the recovery movement, their motivation to get help because of their children, and having programs in the alcohol and drug system that are appropriate for women’s needs.

The Lesbian and Bisexual Women’s Health Project was funded by Health Canada and Status of Women Canada and coordinated by the BCCEWH. Caring for Lesbian Health: A Resource for Canadian Health Care Providers, Policy Makers and Planners, Empower Yourself postcards, and the Tip Sheet for Health Care Providers are all available in French and English. Hard copies can be ordered free of charge from Health Canada Publications, Postal Locator 0900C2, Ottawa, K1A 0A9, phone (613) 954-5995, fax (613) 941-5366.

Out in the Cold: The Context of Lesbian Health in Northern British Columbia, Making Choices/Taking Chances: Lesbian/Bi/Queer Women, Assisted Conception and Reproductive Health are available from the BCCEWH, E311-4500 Oak St., Vancouver, BC, V6H 3N1, Ph: 604-875-2633, Fax: 604-875- 3716, Email: bccewh@cw.bc.ca, www.bccewh.bc.ca Apprehensions: Barriers to Treatment for Substance-Abusing Mothers can be obtained for $15 from the BCCEWH or via http://www.bccewh.bc.ca/pub.htm


Prairie Women’s Health Centre of Excellence (PWHCE)

Women, Disability Rights and Prenatal Technologies
The Ethical and Human Rights Implications of Prenatal Technologies: The Need for Federal Leadership and Regulation explores the increased use of prenatal technologies from both a disability rights and feminist perspective. This thought-provoking research paper, by Yvonne Peters and K. Lawson, points out that such technologies that have rapidly become routine practice in the care of pregnant women, in the absence of any regulatory framework or reflection on the myriad social, legal and ethical issues raised.

The authors point out that the most frequently given reason for prenatal testing is to prevent or ameliorate disabling conditions that are genetically based. They argue that discrimination against persons with disabilities is so pervasive and the penalties associated with raising children with disabilities are so grave that refusing to abort a potentially disabled foetus is not a choice that many pregnant women feel is in reality available to them.

It is the assumption of abortion as the logical follow-up procedure when prenatal testing indicates a possible disability that is of particular concern for disabled people. Disability is currently considered the only legitimate grounds for selective abortion, which suggests that it is primarily concerned with reducing the incidence of disability in society.

Economic and scientific resources are far more concentrated on refinement of prenatal technologies than on finding treatment for defects thus detected. We should question the concentration on identification of defective genes, rather than eliminating poverty, improving prenatal nutrition, and reducing environmental toxins, which are leading causes of health problems in infants.

A crucial aspect of disability is the attitudes and norms of a society constructed only for able-bodied people. The authors criticize both the cost benefit view of disability and the "quality of life" argument, which assumes that no life is preferable to life with a disability.

Use of prenatal testing is widely varied. Current patterns have the potential to disproportionately situate the majority of disabled people within certain geographically isolated, low income and minority segments of society. What will happen to programs for people with disability when people with money and power no longer identify with the issue?

Prenatal testing technologies, by forcing a decision to abort, may in fact restrict rather than enhance women’s reproductive autonomy. The routinized use of testing has the potential to cast women as the genetic gatekeepers of society, not only responsible, but accountable for, the birth of disabled children. The authors argue that disability rights and women’s reproductive rights are not opposing concepts, but may well be linked casualties in a world obsessed with genetic perfection.

The paper examines the Canadian Human Rights Law and the Canadian Constitution and identifies legal bases for discriminatory use of prenatal technologies. The authors recommend that the federal government take a leadership role in establishing uniform national standards for prenatal testing, include prenatal testing reproductive technologies legislation and promote public and professional education on this issue.

Left In The Cold: Women, Health and The Demise of Social Housing Policies
Left in the Cold, by Darlene Rude and Kathleen Thompson, is a new study of the links between housing policies and women’s health, particularly in light of governments’ withdrawal from social housing since the early 1990’s. The study focused on the effect of gender on accessing and maintaining adequate housing, rather than the typical focus on income. The report includes a review of the literature on links between housing, health and gender, an overview of housing policy and practice changes in Canada over the last decade, and data on the influence of housing on health status.

The researchers interviewed women in Regina and Winnipeg who had first-hand experiences of difficulties in accessing or maintaining adequate housing. They also interviewed professionals working in housing policy or providing front-line housing services. All of the participants in this study had lived in or were currently living in unaffordable, unsuitable or sub-standard housing. Women, especially women with children, reported particular difficulties in affording and getting into suitable housing. The majority had been struggling with housing issues for years and had been displaced multiple times. The women reported stress due to sub-standard and unsafe housing, and felt their health and the health of their children was affected by danger and difficulties in neighbourhoods, plumbing and heating problems, infestations of rodents and insects, and air-quality problems. Most of the women felt harassed, including sexually harassed or mistreated by their landlords, with inadequate processes to deal with this harassment.

The researchers found that women are considerably more likely than men to be in need of housing, particularly women living alone and female lone parents. For example, 64% of female-headed lone-parent families are in need of housing, compared to 36% of male-headed lone-parent families. A relationship was also found between gender and ethnicity, as Aboriginal women are more than twice as likely (35%) as non-Aboriginal women (15%) to be in need of housing.

Several areas for action were identified, including the need to address the shortage of adequate and affordable housing for women, particularly women raising young children, and to ensure basic health and safety regulations are followed in rental housing. Heating systems and insulation are particularly essential, so that women and children are not living without heat in winter. There is a need for housing policies and programs that recognize the particular challenges of women and children in the housing market. Training and resources to help women do simple home maintenance tasks are suggested, as well as a mechanism to mediate safety and harassment issues between landlords and female tenants.

The Ethical and Human Rights Implications of Prenatal Technologies: The Need for Federal Leadership and Regulation is available online at http://www.pwhce.ca or from PWHCE, 56 The Promenade, Winnipeg, MB R3B 3H9 Ph: (204) 982-6630, Fax: (204) 982-6637, E-mail: pwhce@uwinnipeg.ca Left In The Cold: Women, Health and The Demise of Social Housing Policies is available online at http://www.pwhce.ca/left-cold.htm or from PWHCE.


National Network on Environments and Women’s Health

The Flood Of the Century: Stories Women Tell
The Red River flood of 1997 inundated large areas of agricultural and urban land in southern Manitoba, exacting considerable toll, not only in loss of property, but a variety of psychosocial losses as well. The effects of this flood will stay with those most affected for years to come.

In most studies of disasters, little attention is focussed specifically on women. Instead, women’s experiences are subsumed in the analysis or are ignored altogether. Under circumstances of collective stress brought on by disasters, understanding women’s roles is important because their actions will frame how and how well others adapt and adjust to dislocation and loss, and even how communities recover.

This study explored women’s experiences in “The Flood of the Century,” specifically the nature of women’s work during the flood, the health and social impacts of the flood on a sample of women and their families, and contributes to our understanding of women’s experiences of disasters.

Stories were gathered from women who experienced the flood in the Rural Municipality of Ritchot and Roseau First Nation located in Ritchot, an area just south of the city of Winnipeg hard hit by flood waters. Also interviews were conducted with women working for relief organizations active in the flood area.

Key findings of the study included major concerns and issues about flood information, resources and preparedness. Commonly cited concerns related to the accuracy and adequacy of flood information; the flood preparedness of the municipality; the coordination of the flood response; the coordination of flood relief; and the insensitivity of city, provincial and federal politicians. All of the women believed that the flood had been mismanaged at some level. Insufficient resources and poor coordination of resources were common complaints.

Many women indicated that in the future, they would defy any mandatory evacuation notices. Politicians, in particular, were held out for significant criticism. Virtually everyone was frustrated by the compensation process and the changing rules of entitlement. After three years, several women still had outstanding claims to be settled and many were living in houses that were only partially finished.

Women’s work was found to be vital but invisible. Women reported working from early morning until late at night, for weeks and months on end. They talked about the endless preparation of meals not only for families but for armies of volunteers. They described their frequent and frustrating searches for sand and sand bags.

Women were responsible for managing the stress and social psychological dimensions of the flood for their families. They were instrumental in facilitating a sense of community within their neighbourhoods. Women spent many hours negotiating and mediating with official agencies. They were responsible for putting lives back together, rebuilding a sense of home, and forging a sense of community.

Despite these key roles, the researchers reported that the women interviewed seemed puzzled that their experiences of the flood were of interest. This caring work that women told researchers about was essential, yet somehow invisible even to them.

Women spoke about effects of the ‘The Flood of the Century’ on their health, whether they had developed new health problems, and whether they had increased their use of medications. Almost all of the women indicated feeling worried, upset, sad, fearful, lonely or depressed. Tension was particularly acute, and almost all said they suffered from fatigue all the time. Three years after the flood, most of the women stated that their health had been compromised by the flood, and that other family members were experiencing health problems that they attributed to the flood.

It is clear that these women played a significant role in this flood—working to prepare for the flood, making decisions about living through the flood or working to recover from it. All of the women stated they had not realized how strong they were and that they had developed new skills and confidence because of the flood. They displayed enormous resilience in the face of disaster and committed themselves to recovery in every sense of the word.

Breast Cancer and Infertility
Beliefs, Attitudes and Behaviours Towards Breast Cancer and Infertility uses breast cancer and infertility as cases to study the role of quantitative and qualitative methods in women’s health research. Women and men were surveyed to determine what they believed were leading causes of these diseases, and to find out what treatments they would choose if they or someone they loved were at risk. The study surveyed 750 men and women in Winnipeg, conducted focus groups in three other regions of the country, and included very diverse populations.

In the survey both men and women believed that having a mother diagnosed with breast cancer, genetic predisposition and environmental toxins were leading causes of breast cancer. 46% of those surveyed had ever used clinical breast exam, 44% regular BSE, 35% mammography and 17% alternative forms of healing. Less than 1% practiced exercise or change in diet as a breast cancer preventive.

Regarding infertility, both sexes believed that problems with sperm, sexually transmitted diseases, and hormonal imbalances were leading causes. Those in the survey who had tried any treatment for infertility clearly preferred low-tech supports such as alternative healing methods and ovulation charting and timed intercourse. No survey respondents had ever used assisted reproductive technologies, although many women in the focus groups had. Women were six times more likely than men to report being infertile or knowing someone who was, and women were more likely than men to list adoption as an option they would consider.

The study provides valuable direction to the development of policies and practices relating to breast cancer and infertility. The low use of BSE and clinical breast exams shows a need for improved breast health education. Gender differences in knowledge and attitude make the case for widespread interventions. The limited awareness of the ways sexually transmitted diseases contribute to infertility suggests a need for more education in this area, as does the reluctance to discuss infertility and confusion about its causes and treatments. The survey participants’ emphasis on low-tech treatments suggests a mismatch between public practice and the high level of public policy supporting assisted reproductive technologies. Greater attention to improving alternative treatments and adoption may be warranted.

The Flood Of the Century: Stories Women Tell, by Dr. Karen Grant and Dr. Nancy Higgitt, was co-funded by the University of Manitoba’s UM/SSHRC Research Grants Program. It is available online at http://www.yorku.ca/nnewh or can be ordered from the NNEWH, c/o Centre for Health Studies, York University, 4700 Keele Street, 214 York Lanes, Toronto ON M3J 1P3, Ph: (416)736-5941, Fax: (416)736-5986, email: nnewh@yorku.ca Does Gender Count? Differences in English-Canadian beliefs, attitudes and behaviors towards breast cancer and infertility by Dr. Gina Feldberg, Lisa Strohschein, Dr. Karen R. Grant, and Dominika Wranik-Lohrenz is available online at http://www.yorku.ca/nnewh/english/nnewhind.html


Atlantic Centre of Excellence for Women’s Health (ACEWH)

A Healthy Balance: A Community Alliance for Health Research on Women’s Unpaid Caregiving
The Healthy Balance Research Program is a five-year program of research funded by the Canadian Institutes for Health Research investigating the relationships between women’s health and well-being, family life, and earning a livelihood. The lead organizations are the Atlantic Centre of Excellence for Women’s Health and the Nova Scotia Advisory Council on the Status of Women. More than 25 researchers from universities, the public policy domain, and health organizations work with other community and government partners that have provided various modes of support.

The central focus is to acquire a better understanding of the impact of unpaid caregiving on women’s stress and health status in Nova Scotia—whether this caregiving work is done on its own or combined with paid work. How is caregiving organized? How does caregiving affect people’s sense of empowerment in their lives and their health and well being? What is the relationship between social and economic factors, the interaction with paid work, and the relationship between caregiving and ethnicity, culture, location, age, and income?

The first step in the research was a background paper, Thinking It Through: Women, Work and Caring in the New Millennium by Pat Armstrong and Hugh Armstrong. Care work is women’s work. Paid and unpaid, located at home, in voluntary organizations or in the labour force, the overwhelming majority of care is provided by women. It is often invisible, usually accorded little value and only sometimes recognized as skilled. Thinking It Through draws on both Canadian and international literatures to help understand the forces, structures and relationships that construct women as carers and undervalue care work. The purpose of this analysis is to develop guidelines for thinking about caring. It is designed as a companion piece to One Hundred Years of Caregiving in Canada (Pat Armstrong & Olga Kits, Ottawa: Law Commission, 2001).

Thinking It Through: Women, Work and Caring in the New Millennium can be ordered from the Atlantic Centre of Excellence for Women’s Health, PO Box 3070, Halifax, NS B3J 3G9. Ph: 902-420-6739, Fax: 902-420-6752, E-mail: acewh@dal.ca, or via http://www.medicine.dal.ca/acewh