What do women want to know? - Jean Hailes

What do women want to know? Women’s health information needs in Australia survey 2015 Identifying gaps in women’s health

What do women want to know? Women’s health information needs in Australia survey 2015

Acknowledgements Acknowledgement and thanks go to the following people and organisations: •

The Eirene Lucas Foundation for their generous support to develop and promote the survey

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Dr Sarity Dodson and Crystal McPhee at Deakin University, Melbourne Australia for their ongoing contribution, support and research expertise

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Australian Indigenous HealthInfoNet, Australian Primary Health Care Nurses Association, Choice Capital, Cotton On Group, Harris Scarfe, Jetstar Australia & New Zealand, MMG, Mozi, Multicultural Centre for Women’s Health, National Australia Bank, National Rural Health Alliance, Store & Order, Victorian Farmer’s Federation and Virgin Australia for their involvement in survey dissemination

Grants and donations for research and education are only accepted on the basis of full academic freedom, including our right to publish all results deriving from the studies. If you would like further information on this report please email [email protected] or call (03) 9562 6771 or toll free 1800 532 642.


CONTENTS Summary of key findings

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Main Report 4 1. Introduction.......................................................................................................................... 4 1.1 About Jean Hailes for Women’s Health.................................................................... 4 1.2 Translation................................................................................................................. 4 1.3 Why the need for a national women’s health survey in Australia?............................ 5 1.4 Why focus on gaps?.................................................................................................. 5 2. Survey methodology............................................................................................................. 6 2.1 The survey................................................................................................................. 6 2.2 Recruitment...............................................................................................................6 2.3 Survey participants ................................................................................................. 7 2.4 Data calculations and analysis................................................................................... 8 2.5 Ethics......................................................................................................................... 8 3. Survey results........................................................................................................................ 9 3.1 Health concerns and worries..................................................................................... 9 3.1.1 All women................................................................................................. 9 3.1.2 Health professionals.................................................................................. 9 3.2 Knowledge: little knowledge versus a lot................................................................ 10 3.2.1 As reported by all women....................................................................... 10 3.2.2 Regional and remote women.................................................................. 11 3.2.3 Culturally & linguistically diverse (CALD) women................................... 12 3.3 The unmet health information needs of women in Australia.................................. 13 3.3.1 As resported by all women..................................................................... 13 3.3.2 As reported by health professionals....................................................... 14 3.4 Ease of access and trustworthiness of sources of health information..................... 16 3.5 Provision of health information to women.............................................................. 17 3.6 How can we better meet women’s health needs?................................................... 18 3.6.1 Women’s perspective.............................................................................. 18 3.6.2 Health professional’s perspective............................................................ 18 3.7 Healthy lifestyle barriers.......................................................................................... 19 4. 5.

Summary............................................................................................................................. 20 References.......................................................................................................................... 21

Appendices 22 Appendix A Summary statistics for specific groups..................................................................... 22 A1 Summary statistics of women.................................................................................. 22 A2 Summary statistics of health professionals.............................................................. 23 Appendix B Search strategy......................................................................................................... 24

B1

Search strategy for literature review........................................................................ 24


SUMMARY OF KEY FINDINGS In 2015 Jean Hailes for Women’s Health conducted a large national survey to understand health information needs and behaviours of women living in Australia. Both women and health professionals were asked to complete an online survey that took approximately 10 minutes. The survey had three main aims: •

To examine the perceived gaps in women’s health information and services as identified by women and health professionals

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To understand the future health needs of women living in Australia as identified by women and health professionals

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To assess women’s experiences in maintaining their health and preventing illness and disease, as identified by women and health professionals

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Women’s Health Week The findings of this survey form part of the launch of the Jean Hailes 2015 Women’s Health Week (WHW) and have an important role in Jean Hailes’ commitment to improving physical and emotional health and wellbeing in all women across Australia. The Jean Hailes WHW, now in its third year, is a week dedicated to improving knowledge and understanding of women’s health. Taking place in the first week of September each year, it is a free online event where women can focus on their health, learn about different aspects of their health and take action if they need to. Women’s health events are also held around Australia each year as part of the week, supported by resources from Jean Hailes.

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Key findings The 2015 ‘Women’s health information needs in Australia’ survey was a national survey of 3,325 women and health professionals of differing ages, cultural backgrounds and from a range of metropolitan, regional, rural and remote locations around Australia. With this large data set we found:

What women worry most about •

Healthy living; weight management, physical activity, ageing, fatigue and diet

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Cancer, in particular breast, skin and ovarian cancer

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Mental and emotional health including depression, anxiety, memory, dementia and stress

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Cardiovascular health including high blood pressure, stroke and cholesterol

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Sexual health, especially painful sex

Knowledge gaps

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Women indicated they know a lot about healthy living, periods, contraception, sexual health, depression and anxiety

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Women told us they know little about recognising the symptoms of heart attack or heart disease and that having information on managing blood pressure and cholesterol is important to them. Recognising the symptoms of heart attack for women is vital as women are less likely than men to seek help when they are having a heart attack and health professionals don’t always treat women immediately for heart attack when they present

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Women and health professionals believed women need to know more about the safety and effectiveness of natural therapies. Given large numbers of women use natural therapies, this is an area of need which requires communication of evidence-based information and can significantly impact on women’s health

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Domestic violence has recently received attention from the media, law enforcement and mulitple levels of government. The focus is welcome, however, our survey is telling us that both women and health professionals still want and need more information on domestic violence prevention



Finding information •

Women easily find health information on the Internet and social media but they don’t necessarily trust these sources, which comes as a very positive finding. ‘Dr Google’ is now a well used term and while many laugh about the term, the impact of misinformation about health on the Web can have serious and deleterious effects. The survey suggests that the sources women are more likely to trust are independent health organisations such as Jean Hailes, health professionals, government Websites and health information pamphlets.

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Health professionals use the Internet and health information pamphlets to access health information for their patients and clients but are not as likely to use government Websites

Access to services •

Women would like more women’s health clinics and more doctors trained in women’s health, but not necessarily more female doctors

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Health professionals think women would benefit from increased access to healthcare in rural and remote areas, increased health promotion, education and preventative measures and increased mental health support

Barriers to healthy living Lack of time and lack of motivation are the most common barriers cited by women and health professionals to women being their healthiest. However, while women list lack of money as the next barrier, health professionals have a slightly different view. They think women are ‘unsure’ about what they need to do to be at their healthiest. This could mean two things: 1) That women receive a lot of information about healthy living but this doesn’t necessarily help them know what to actually do and doesn’t convert into practise or 2) That women don’t receive enough of the right information about living a healthy life and are still unsure what to do to be the healthiest they could be.

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MAIN REPORT 1. Introduction 1.1 About Jean Hailes for Women’s Health Founded in 1992, Jean Hailes for Women’s Health reflects the enduring legacy that Dr Jean Hailes made to women’s health. Jean had a far-sighted vision to improve the quality of women’s lives and give them practical information based on the best available evidence. In 1971 Jean established the first clinic in Australia dedicated to the management of women at midlife and beyond. Following her death in 1988, her colleagues and friends established the Jean Hailes Foundation to honour her memory. Jean Hailes for Women’s Health is a national not-for-profit organisation based in Victoria. Jean Hailes was created to provide women with information, knowledge and clinical care to assist them to actively manage their own health and wellbeing throughout the whole of their life. Dedicated to the prevention of illness and improving women’s knowledge and understanding of important health issues from adolescence to midlife and beyond, Jean Hailes translates the latest scientific and medical evidence in order to inspire positive change in women’s health and wellbeing. In addition, the organisation has become a leading entity for the provision of evidence-based women’s health knowledge for the health industry. We have a 22 year history of successfully working with women, their families, health professionals, research groups and policy makers and are regarded throughout Australia as a leader in women’s healthcare.

1.2 Translation The Jean Hailes Model of Translation converts research, evidence, information and clinical care into education resources and programs to meet the needs of diverse audiences, including women, community groups, health professionals, policy makers, other researchers, the media and employers. One of the first steps in the process of translation is to identify gaps that exist in women’s health research, clinical care and education. Jean Hailes encourages readiness for change and better health outcomes.

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1.3 Why the need for a national women’s health survey in Australia? Many past studies of women’s health information needs have been limited by their focus on specific disease areas, sample groups and age groups or have been conducted overseas and not in Australia. Surprisingly, few studies have consulted with women and health professionals at a national level about health concerns and information needs of Australian women across the whole life course. For example, past studies of information needs have been conducted in women with cervical cancer and human papillomavirus infection1, 2 polycystic ovary syndrome (PCOS)3 and breast cancer4, 5 or have focused on the health of a particular cohort such as pregnant women6, widowed women7, women in Australian mining towns8, or focused on overseas experiences9. It is clear from this limited past research that a general community and health professional understanding of women’s health information needs was an evidence gap in Australian research literature.

1.4 Why focus on gaps? By focusing on gaps where limited effective information and/or resources currently exist in Australia, Jean Hailes aims to give women, community organisations, health professionals, government, and employers of women the knowledge and understanding of women’s health needs in areas that are often little understood and assist in developing strategic approaches and resources. At Jean Hailes we seek to quantify the ‘high impact gaps’ in the health and wellbeing of Australian women; that is, the most important questions which have high clinical relevance. We have a history of identifying gaps in women’s health knowledge and care across the lifespan including menopause, premature menopause, PCOS, anxiety, heart health and endometriosis. The results of this current survey will be used by health professionals, policy makers, media and other interested organisations to inform the further understanding of women’s health in Australia and provide a focus for the next steps to improved knowledge, access and improved health behaviours for women, their families and the community. We know that women are often the educators and gatekeepers of health in the family so any work we do has far reaching impact in the community.

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2. Survey methodology 2.1 The survey The Women’s health information needs in Australia survey was designed to explore current women’s health knowledge, worries and concerns about health, unmet health needs and barriers to healthy behaviours across the Australian landscape. Two separate online surveys were designed for women and health professionals by the Jean Hailes Translation, Education and Communication Unit consisting of experts in psychology, health behaviour change, health promotion and public health. Questions developed for the survey were initially based on a literature review of existing understanding of women’s health information needs, the 15 Jean Hailes core businesses, and previous work conducted by Jean Hailes on health-related behaviours. The draft surveys were then distributed for consultation and further development to Jean Hailes clinicians, representative community groups and researchers (with expertise in health literacy) at Deakin University. The surveys invited women and health professionals to comment on their knowledge, health concerns, unmet health information needs and barriers to good health experienced by women living in Australia. While the majority of surveys were completed online, survey material was also made available in hardcopy to culturally and linguistically diverse communities through translators. These surveys, available in 13 languages (Chinese (simplified), Arabic, Karen/Burmese, Italian, Spanish, Vietnamese, Dari, Punjabi, Greek, Croatian, Pilipino (Tagalog), Farsi and Burmese) were mostly completed in the presence of a multicultural health worker.

2.2 Recruitment Participants were recruited through established Jean Hailes communication channels and community partners. Invitations to participate, accompanied by links to the survey, were published through jeanhailes.org.au, social media and email updates. A diverse range of national community partners including not-for-profit organisations, airlines, banking, health, retail and mining corporations promoted and disseminated the survey link Australia wide.

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Women were considered eligible for the study if they were aged over 18 years, were able to access the online survey or were able to sit with a translator and complete the survey. The survey was designed to be accessible to participants with varying levels of health literacy.

2.3 Survey participants A total of 3325 individuals including consumers and health professionals, completed the online surveys over a one month period from January 20th to February 20th 2015. The survey reached all states and territories, as well as socio-economically diverse communities (see Figure 1). 2798 women nationally completed the online survey. Respondents were aged between 18-87 years with an average age of 49 years. One third of respondents resided in regional or remote Australia (35%) and 7% (n=208) identified as having a culturally and linguistically diverse background. In addition, 527 health professionals from across Australia completed the online survey for health professionals. A diverse range of health professionals participated including: nurses (27%), community health personnel and allied health (14%), general practitioners (8%), and chiropractors (8%). Over half (55%) of health professional respondents worked in regional or remote Australia. Further demographics including a breakdown of age and location for all participants can be found in Appendix A.

Figure 1. Location of survey participants across Australia (N = 3325).

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2.4 Data calculations and analysis Data analysis software; SPSS Statistics and NVivo were used to analyse both quantitative and qualitative survey data. Health concerns Thematic analysis was used to identify recurring concerns and worries reported by women. Level of knowledge The level of knowledge was determined using a scale from 1 (not at all) to 4 (quite a lot). Data were broken down into those women who knew little about a topic and those who knew quite a lot. Level of unmet need women The level of unmet health information need was determined by taking those topics women reported knowing very little about and combining them with those health topics that were rated important to them. Level of unmet need health professionals Health professionals were also asked about the unmet health information needs of women and rated them on a scale of 1 (not at all) to 5 (extremely well met). Comparisons between groups For comparisons between different groups (eg regional and remote women and culturally and linguistically diverse women), a combination of parametric and nonparametric statistical techniques were applied. These included ANOVAs, t-tests, and central tendency measures such as the mean and median value (p significant at