Melbourne School of Population and Global Health - Research Publications
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ItemThree Certificates are not enough: Rover Thomas and Art Centre Archives(UWA Publishing, 2017-11-01)
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Item“It just keeps hurting”: Continuums of violence and their impact on cervical cancer mortality in Argentina.(UCL Press, 2023)Focusing on cervical cancer, in this chapter we examine the structural and cultural drivers of health inequalities experienced in the everyday social worlds of persistently poor Argentinian women and how these contribute to increased probability of cancer death.
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ItemIntersections of stigma, morality and care: Indonesian women’s negotiations of cervical cancer(UCL Press, 2023)Our first encounter with cervical cancer stigma in Indonesia was during a preliminary field trip in 2018 when we visited stakeholders engaged in cancer prevention and care. As we sat in a circle at a community-based cancer organisation (cancer CBO), drinking sweet tea and sharing snacks, we began the process of getting to know one another and our involvement in cancer advocacy and research. For many women, this involved telling their own cancer stories.
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ItemCancer ethnographies and the politics of care(UCL Press, 2023)In recent decades, growing attention has been paid to what is described as an ‘epidemic’ of cancer, the term used to reflect recorded increases in diagnosis, severe illness and mortality. It is likely, too, that with the increased longevity of populations worldwide, there is a rise in absolute incidence. Cancers develop with age, reflecting the slow development of many cancers, the accrued effects of exposure to carcinogens and infections and the decreased capacity of the body to eliminate damaged DNA. Increased visibility also reflects changes in technology and health systems that have resulted in improved diagnosis and reporting. Given this mix of circumstances, the language of epidemic is perhaps misplaced. But the rhetoric reflects growing awareness of the pervasiveness of multiple related diseases of organs, tissues, cell type, forms and progress. It’s an explosion, an epidemic, of understanding cancer’s complexity, its differences and the diverse populations who are affected. There are vast discrepancies in cancer prevalence, survival rates and responses between countries in the global south and global north, with disparities that reinforce the need to theorise cancer in local and global perspectives.
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ItemQualitative research in Women’s and Gender Studies: the ‘radical focus group’ as feminist praxis(Edward Elgar Publishing, 2023)Women's Studies emerged at the height of the so-called 'second-wave' of feminism in the West, and used elements of critical pedagogy and feminist consciousness-raising to magnify women's voices in the academy and beyond. Consciousness-raising (CR) was a key mobilising tool of the women's liberation movement, giving women a space to share their experiences under patriarchy and organise collectively to challenge it. By the 1980s onwards, however, CR groups declined. Some have argued that the women's and gender studies classroom retained many of the core elements of CR by encouraging personal reflections from students and educators. While feminist researchers have used the classroom as a space to collect data, research that combines the two approaches to inform qualitative data collection is scarce. In this chapter, I use CR and feminist pedagogy, to structure 'radical focus groups' during the data collection phase of my project. This involves a combination of 'sharing', 'listening', 'analysing' and 'abstracting' one's experiences, and unpacking existing feminist theories to generate new knowledge. Ultimately, the qualitative data collection approach proposed here can be used across structural feminist perspectives (e.g., radical, socialist, intersectional), generating data that is emancipatory in focus, and empowering for participants.
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ItemFeminist Pedagogy, the Women’s Health Movement, and the Rise of the Anti-Diet Health Professional(Springer, 2023)Feminist teaching methods, informed by the Women’s Liberation Movement, have played an important role in honoring and giving authority to the lived experiences of women under patriarchy. These methods have been particularly useful in the health sciences, which have traditionally been the site of androcentric ideas about health and the trivialization of women’s health concerns. However, in recent decades, women have entered the health sciences in greater numbers and incorporated their lived experiences as women into their “learned experiences” as health professionals. One notable example of the successful merging of women’s lived experiences under patriarchy, and their learned experiences in male-dominated health sciences, is the pedagogy and practice of weight-inclusive health professionals. This chapter discusses the origins of Women’s Studies, its significance to the Women’s Health Movement and its emergence in the health sciences, and the “anti-diet” movement as a contemporary example of women’s lived and learned experiences in improving women’s health. Overall, this chapter concludes by reflecting on the legacy of feminists and fat activists who inspired “anti-diet” health professionals, and on the future of the weight-inclusive health paradigm.
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ItemThe Development of the EQ-5D-5L and its Value Sets(Springer International Publishing, 2022)Abstract This chapter introduces the EQ-5D-5L questionnaire and its development by the EuroQol Group. The availability of the EQ-5D-5L, and the growing evidence of its pivotal role as a measurement system, generated a demand for ‘values’ to accompany it that would enable the use of EQ-5D-5L data in the estimation of quality-adjusted life-years (QALYs) and other applications where EQ-5D-5L profile data needs to be summarised by a single number. Chapter 1 sets out the main aim of the book: to provide an accessible source of information and guidance to support users of EQ-5D-5L and its value sets. Specifically, the book aims to improve users’ understanding of how EQ-5D-5L value sets are generated using the internationally standardised EQ-VT protocol; to raise awareness of the characteristics and properties of value sets; and to inform users’ choice of which value set to select for which purpose, and how that choice may affect analysis. The chapter concludes with an overview of the content of the book.
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ItemWhere Next for EQ-5D-5L National Value Sets and the EQ-VT Protocol?(Springer International Publishing, 2022)Abstract The purpose of this chapter is to reflect on the future of EQ-5D-5L valuation studies, going beyond the value sets summarised in this book. This includes a number of linked themes. First, the EQ-5D-5L valuation research programme has allowed the continued evolution of methods, as methodological studies have demonstrated that aspects of the EQ-VT protocol could be strengthened or improved. This chapter describes some of the key candidates for future refinement of the methods for valuing EQ-5D-5L. Second, while the standardisation of valuation methodology is important, it is anticipated that many countries may require a less resource-intensive, but still rigorous version of the valuation protocol. This chapter outlines the progress towards developing a ‘lite’ version of the EQ-VT protocol, and considers the future possibility of valuation protocols based exclusively on discrete choice experiments, with accompanying strengths and weaknesses. Finally, the ‘shelf-life’ of value sets is considered, along with how demographic and other societal changes may manifest in how people value health, and the implications of that for the need to update EQ-5D-5L value sets.
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ItemGuidance to Users of EQ-5D-5L Value Sets(Springer International Publishing, 2022)Abstract One of the most common questions that the EuroQol Group is asked by users of the EQ-5D-5L is: ‘Which value set should I use?’. The aim of this chapter is to provide guidance on this issue for users. There are two principal ways that EQ-5D-5L value sets are applied and used. The first is for summarising health-related quality of life to estimate quality-adjusted life-years (QALYs) and changes in QALYs that result from the health care use. This kind of evidence is often part of health technology assessment (HTA). The second category of use is when value sets are employed as a way of summarising and statistically analysing EQ-5D-5L profile data without the aim of estimating QALYs. In each case, the stated requirements of those who use this evidence in decision making is a key consideration. This chapter summarises the relevant considerations to be taken into account when choosing a value set for QALY estimation purposes; and the considerations which are relevant to choosing a value set to use in other, ‘non-QALY’ applications.
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ItemParticipant-Guided Mobile Methods(Springer, 2017)Health research is increasingly concerned with tackling health inequalities and inequities. Given that poorer health outcomes are often experienced by those who are suffering a degree of socially, economically, or environmentally determined disadvantage, it is incumbent on us as researchers to include the views and voices of diverse and sometimes marginalized or vulnerable population groups. Challenges which may accompany this imperative include engaging so-called hard-to-reach populations, and addressing an imbalance of power that often occurs between researcher and participant. Participant-guided mobile methods are one strategy for rebalancing this power differential when undertaking qualitative research. In this chapter, we describe the method and several case study examples where the authors have used it. We also discuss the types of research questions for which it is particularly well-suited along with its benefits and its challenges. When compared with a more traditional face-to-face interview, participant-guided mobile methods allow participants more power and control over the interview process. In addition, the method can yield observational and visual data as well as interview data, and is useful for including children and other participants who may be less articulate or lack proficiency in the language of the interviewer as it provides opportunities to “show” as well as “tell.”