Jan 1, 2000 -
NSW Public Health Bulletin
Volume 11, Numbers 1 and 2 January–February 2000
ISSN 1034 7674 State Health Publication PH 000003
WOMEN’S HEALTH RESEARCH: SIGNING UP OR SELLING OUT? GUEST EDITORIAL Jeanette Ward Director, Needs Assessment & Health Outcomes Unit Division of Population Health Central Sydney Area Health Service
This second of two special issues of the NSW Public Health Bulletin demonstrates the breadth of women’s health research in NSW. In two articles, Wendy Brown and her colleagues provide an introduction to ‘Women’s Health Australia’. Unrivalled in its scope, Women’s Health Australia will derive new insights into the effect of social and medical events on women’s lives, the influence of protective factors such as personal ‘hardiness’ on health outcomes, patterns of health service utilisation and differences between rural and urban women’s health. Elizabeth Harris and her colleagues have focused on a single urban community, grounding their contextual insights within a social policy paradigm. This third article summarises some of the data obtained from face-to-face interviews with residents from one of the most socially disadvantaged communities in NSW. One third of women interviewed reported they were ‘worried’ or ‘extremely worried’ about leaving their house in case it was burgled. Sixty per cent ‘would not be sorry to leave’. Projects to increase the social capital within communities such as this may support the health of these women. These three articles also provide a glimpse of the breadth of disciplines, perspectives and methods needed to understand and improve women’s health. This is not to deny the longstanding tension when hard-nosed ‘reductionists’ with their claims to objectivity are challenged by radical feminist perspectives on women’s health in particular and the nature of scientific enquiry in general. Nonetheless, health care has thrown its lot in with the empiricists, having declared its allegiance to ‘evidence-based medicine’. Aligned with science, women’s health could forge ahead. Peer-reviewed papers arising from research described in this issue by Women’s Health Australia and the Centre for Health Equity Training, Research & Evaluation will form an irrefutable basis for policy, service innovation and evaluation in women’s health in NSW. continued on page 2
Vol. 11 No. 1–2
CONTENTS 1
Guest editorial – Women’s health research: signing up or selling out?
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The Australian Longitudinal Study on Women’s Health: study design and sample
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The Australian Longitudinal Study on Women’s Health: selected early findings and future research objectives for the main cohorts
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Improving the health and life chances of women in disadvantaged communities
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Developing a health outcomes framework for women
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Gender equity in health
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Women’s health coordinators
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Women’s health coordinators contact and mailing list
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Evidence, effectiveness and efficiency in breast cancer research
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FactSheet : Headlice
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National award for injury prevention
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Infectious diseases: January–February
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However, other realities must be acknowledged. In a landmark report entitled A sliver not even a slice, the paltry amounts allocated to research examining the health effects of gender stereotyping and health system issues of concern to women was documented.1 Redman et al. had previously identified the discrepancy between women’s concerns and health research priorities,2 subsequently extending available methods to identify funding priorities for breast cancer research from researchers and consumers.3 How these assessments shape the research agenda will be seen over time. Regrettably, recommendations for dedicated womens’ health research institutes and research funding responsive to the constituency of women have come and gone.4,5 In this issue of the Bulletin, Harris herself warns against research and health services development ‘that may have no relevance to the lives of the women who need our support the most’. Today, ‘biomedicalisation’ of women’s health research looms large yet women’s health research is not just osteoporosis, menopause, breast cancer and genotyping. Profound class-based inequities exist in women’s health. Research hypotheses may be statistically neat and tidy in the laboratory but experimentation in the ‘real world’ in which health care is delivered will yield knowledge more useful to health service planning.6 Clearly, links between policy, health services development and women’s health research need to be strengthened. In their article, Murty and Osborn anticipate the development of a ‘health outcomes framework’ for women’s health. Indicators with which to monitor advances in women’s health will need to be comprehensive, meaningful and acceptable to a diverse audience from potentially conflicting paradigms. Those advocating social determinants of health will likely expect ‘up-stream’ indicators of health and wellbeing such as literacy, individual empowerment and community capacity. Given the Quality Framework recently promulgated by NSW Health,7 other indicators in the women’s health outcomes framework should include clinical issues such as gender discrepancies in access to cardiac surgery, adherence by surgeons to National Health and Medical Research Council early breast cancer guidelines or psychological morbidity among female carers of stroke patients. The challenge for women’s health is to develop an outcomes framework which does not undermine its fundamental goal and cherished principles.8 Area-based women health coordinators need increasingly sophisticated skills in program evaluation, critical appraisal and advocacy. Kate Lamb chronicles the history and role of women’s health coordinators. In the aftermath of the Public Health Outcomes Funding Agreement, Lamb recommends partnerships within and outside area health services.
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As exemplified in the authorship line-up of this issue of the NSW Public Health Bulletin, it is pleasing to see more women themselves directing research programs and developing innovative policy. Anecdotally however, nurses and members of other female-dominated health professions continue to be concerned about the competitive, individualistic research funding mechanisms which are dominated by male researchers. Senior positions in health services management are not yet genderbalanced. Audits of publication outputs or gender bias in awarding of research grants and tenure are examples of useful strategies with which to monitor and improve these over-arching structural impediments to women’s health.9,10 Having brought together researchers, policy analysts, women’s health coordinators and practitioners as authors in this and its previous women’s health issue, the NSW Public Health Bulletin invites optimism for women’s health. Such a multidisciplinary dialogue is rare in health care and augurs well for the betterment of women’s health in New South Wales. REFERENCES 1. Melbourne District Health Council. A sliver not even a slice: A report of a study on expenditure on women and health research. Carlton, Victoria: Melbourne District Health Council, 1990. 2. Redman S, Hennrikus D, Bowman J, Sanson-Fisher R. Assessing women’s health needs. Med J Aust 1988; 148: 123–7. 3. Redman S, Carrick S, Cockburn J, Hirst S. Consulting about priorities for the NHMRC National Breast Cancer Centre: how good is the nominal group technique? Aust NZ J Public Health 1997; 21: 250–6. 4. NHMRC. Strategy for health and medical research for the triennium 1993–1995. Canberra: AGPS, 1991. 5. Commonwealth Department of Health, Housing, Local Government and Community Services. National Women’s Health Program: Evaluation and future directions. Canberra: AGPS, 1993. 6. Sainsbury P, Ward JE. ‘The Virtuous Cycle’: Implications of the Health and Medical Research Strategic Review. Aust NZ J Public Health 1999; 23: 3–5, 19. 7. NSW Department of Health. A framework for managing the quality of health services in New South Wales. Sydney: NSW Department of Health, 1999. 8. Commonwealth Department of Community Services and Health. National Women’s Health Policy: Advancing Women’s Health in Australia. Canberra: AGPS, 1989. 9. Ward JE, Donnelly N. Is there gender bias in Research Fellowships awarded by the NHMRC? Med J Aust 1998; 169: 623–4. 10. Osborne M. Does the Aust NZ J Public Health take women seriously? Paper presented at PHA Annual Conference, Darwin, September 1999.
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THE AUSTRALIAN LONGITUDINAL STUDY ON WOMEN’S HEALTH: STUDY DESIGN AND SAMPLE Wendy J Brown, Annette J Dobson, and the ALSWH Research Team Research Institute for Gender and Health University of Newcastle This article describes the Women’s Health Australia (WHA) project, formerly known as the Australian Longitudinal Study on Women’s Health (ALSWH), which commenced in June 1995 as a result of initiatives arising from the National Women’s Health Policy.1 In contrast to several overseas longitudinal studies, which have focused on women from specific geographical areas (for example, the Iowa Women’s Health Study),2 or occupation groups (for example, the Nurses Health Study), 3 this study was designed to explore factors that promote or reduce health in women who are broadly representative of the whole Australian population. An overall goal of the project is to clarify cause–effect relationships between women’s health and a range of biological, psychological, social and lifestyle factors (see Figure 1). The WHA project is committed to focusing on a social view of health and to being relevant to the formulation of health policy. It involves the collection of quantitative and qualitative data, as well as record linkage with other sources of data. The research team of more than 20 investigators, mostly women, encompasses a wide range of disciplinary perspectives including sociology, epidemiology, psychology, medicine, nutrition, demography and statistics. The study involves three main cohorts of women selected on the basis of age: •
young (aged 18–23 years at the time of baseline data collection in 1996) • mid-age (45–50 years) • older women (70–75 years). The studies of these groups are managed by researchers from the University of Newcastle. There are also several smaller special cohorts of Aboriginal and Torres Strait Islander women, which are managed by researchers from the University of Queensland.
FIGURE 1 DIAGRAMMATIC REPRESENTATION OF THE OVERARCHING GOAL OF THE STUDY: TO DETERMINE THE FACTORS THAT DETERMINE GOOD HEALTH FOR WOMEN. PSYCHOLOGICAL
SOCIAL
WOMENS HEALTH
ENVIRONMENTAL
POLITICAL
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In light of these response rates, it is important to assess any response bias in determining the generalisability of study findings. A demographic comparison of respondents and non-respondents was impossible because privacy guidelines prevented access to information concerning women who were selected to receive an invitation but failed to respond. We were able, however, to assess the degree to which participants demographically represent the general population of Australian women through comparison with 1996 census data. The study cohorts include more women in married or de facto relationships than the general population, particularly in the younger group. This reflects the over-representation of rural and remote women, who tend to marry earlier than their urban counterparts. In the mid-age cohort more women are employed, while women in the workforce are underrepresented in the younger cohort. This suggests there may be an over-representation of full-time students in the young cohort. While there is a degree of overrepresentation of women born in Australia and other English-speaking countries in all three main cohorts, women from Europe and Asia are well represented. The proportion of Aboriginal and Torres Strait Islander women in each cohort is also similar to that in the census data,
HISTORICAL
The Medicare database was used by the Health Insurance Commission (HIC) as the sampling frame to select the women to receive the initial invitation to participate in the main cohort studies. Since 70 per cent of Australian women live in major (coastal) cities, there was deliberate over-sampling of women living in rural and remote areas to ensure their adequate inclusion. Statutory restrictions on the use of the HIC database required that the identities of the selected women remain unknown to researchers until they consented to participate or voluntarily contacted the research team. Recruitment was therefore limited entirely to materials mailed from the HIC, without the advantage of usual methods to encourage participation (for example, by telephone contact).
More than 41,000 women (14,792 young women, 14,200 mid-age women and 12,624 older women) responded to the baseline surveys for the main cohorts in 1996. Due to uncertainties regarding the accuracy of the Medicare database, response rates cannot be exactly specified. It is estimated that 41–42 per cent, 53–56 per cent and 37–40 per cent of the young, mid-age and older women respectively responded to the initial invitation to participate.4
BIOLOGICAL
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FIGURE 2 SURVEY PLAN FOR THE THREE MAIN COHORTS OF WOMEN FOR TWENTY YEARS.** YEAR
96 YOUNG
98
99
70-75
00
01
02
22-27
18-23
MID-AGE 45-50
OLDER
97
47-52
03
04
05
25-30
50-55
73-78
06
07
08
3
28-33
53-58
76-81
0
56-61
79-84
82-87
**Figures in italics indicate the age of the women in each main cohort at the time of each planned follow-up survey. Dashed vertical lines indicate past, current and proposed funding periods.
although Aboriginal women from remote areas are underrepresented.4
2. Steinmetz KA, Kushi LA, Bostick RM, Folsom AR, Potter JD. Vegetables, fruit and colon cancer in the Iowa Women’s Health Study. Am J Epidemiol 1994; 139: 1–15.
Baseline surveys were conducted for all three cohorts in 1996, and plans for the follow-up surveys of each main cohort over a 20-year period are displayed in Figure 2.5 The first follow-up surveys of the mid-age and older cohorts in 1998 and 1999 achieved response rates exceeding 90 per cent. Development of the survey for the first followup of the young cohort is currently underway.
3. Barton J, Bain C, Hennekens CH, Rosner B, Belanger C, Roth A, Speizer FE. Characteristics of respondents and nonrespondents to a mailed questionnaire. Am J Public Health 1980; 70: 823–825. 4. Brown WJ, Bryson L, Byles JE, Dobson AJ, Lee C, Mishra G, Schofield M. Women’s Health Australia: recruitment for a national longitudinal cohort study. Women and Health 1998; 28(1): 23–40. 5. Brown WJ, Dobson AJ, Bryson L, Byles JE. Women’s Health Australia: update on the progress of the main cohort studies. J Women’s Health and Gender Based Medicine 1999: 8(5) 681–688.
REFERENCES 1. Brown WJ, Bryson L, Byles JE, Dobson AJ, Manderson L, Schofield M, Williams G. Women’s Health Australia: establishment of the Australian Longitudinal Study on Women’s Health. J Women’s Health 1996; 5(5): 467–572.
THE AUSTRALIAN LONGITUDINAL STUDY ON WOMEN’S HEALTH: SELECTED EARLY FINDINGS AND FUTURE RESEARCH OBJECTIVES FOR THE MAIN COHORTS Wendy J Brown, Annette J Dobson, and the ALSWH Research Team Research Institute for Gender and Health University of Newcastle
INTRODUCTION Women’s Health Australia is a major study by international standards, with the potential to make a significant contribution to the investigation of factors that enhance or inhibit good health for women. The Australian Government, through the Commonwealth Department of Health and Aged Care and the National Health and Medical Research Council, has made a commitment to the research
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and to using the findings to improve the health care system’s response to women’s needs. Comparisons between the three age cohorts described in the previous article are of particular interest in establishing whether the nature and extent of health problems represent sociallyconstructed generational differences, or reflect the biological ageing process of women. The longitudinal design provides a unique opportunity to explore causal relationships between the use of health care services, life events, weight and exercise, violence, use of time (paid and unpaid work and leisure), and long-term health and well being. Our primary aim is to ensure that the findings are translated into policies and practices that are relevant, and reflect the social and cultural diversity of these three
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generations of Australian women. This article describes some early findings of the study, and outlines the main research objectives for the main cohort studies for the next five years. The study began with the objective of exploring the five key themes of: • • •
use of health care services weight and exercise life stages and key events (for example: childbirth, divorce, widowhood) • domestic violence • use of time (paid and unpaid work and leisure). Some of the preliminary findings in each of these thematic areas, and the development of research questions for future focus in each of the main cohorts, are described below. YOUNG WOMEN: STRESS, HEALTH RISKS, PARENTING AND BODY IMAGE Women in the young cohort (18–23 years) were born in the 1970s into a society experiencing escalating social, cultural, economic and technological change.1 In the baseline survey, levels of stress were significantly higher among the young cohort compared with mid-age (45–50 years) and older women (70–75 years).2 Young women reported the main sources of stress to be money, study, and work—employment.3 Future surveys will explore the issue of stress in greater depth, and with a variety of measures. The relationships between stress and other health risk behaviours such as smoking, binge drinking, disordered eating and illicit drug use will also be investigated. As the study progresses it will be possible to ascertain whether high stress levels and their associated risks persist in this generation, or whether they are part of a life-stage phenomenon that will dissipate over time. In 1996, physical and mental health were assessed using the Medical Outcomes Study Short Form health survey (SF-36).4 Mean scores for both physical and mental health were significantly lower for women with young children compared to those without children. This may be due to having young children, or having children at a young age, or to differences in the socio-economic status between women who have children early or later in their lives. A comparison of health levels at baseline and follow-up for women who have children between 1996 and 2000 will be conducted relative to socio-economic status, the age of mother at the time of the first birth, and number of children. As the study progresses we will be able to establish the effect of the age at which women have their children on their long-term health outcomes. In 1996, 28 per cent of young women were underweight according to the Body Mass Index (BMI)
