Maternal bodies and medicines: a commentary on risk and decision-making of pregnant and breastfeeding women and health professionals

<p>Abstract</p> <p>Background</p> <p>The perceived risk/benefit balance of prescribed and over-the-counter (OTC) medicine, as well as complementary therapies, will significantly impact on an individual’s decision-making to use medicine. For women who are pregnant or breastfeeding, this weighing of risks and benefits becomes immensely more complex because they are considering the effect on two bodies rather than one. Indeed the balance may lie in opposite directions for the mother and baby/fetus. The aim of this paper is to generate a discussion that focuses on the complexity around risk, responsibility and decision-making of medicine use by pregnant and breastfeeding women. We will also consider the competing discourses that pregnant and breastfeeding women encounter when making decisions about medicine.</p> <p>Discussion</p> <p>Women rely not only on biomedical information and the expert knowledge of their health care professionals but on their own experiences and cultural understandings as well. When making decisions about medicines, pregnant and breastfeeding women are influenced by their families, partners and their cultural societal norms and expectations. Pregnant and breastfeeding women are influenced by a number of competing discourses. “Good” mothers should manage and avoid any risks, thereby protecting their babies from harm and put their children’s needs before their own – they should not allow toxins to enter the body. On the other hand, “responsible” women take and act on medical advice – they should take the medicine as directed by their health professional. This is the inherent conflict in medicine use for maternal bodies.</p> <p>Summary</p> <p>The increased complexity involved when one body’s actions impact the body of another – as in the pregnant and lactating body – has received little acknowledgment. We consider possibilities for future research and methodologies. We argue that considering the complexity of issues for maternal bodies can improve our understanding of risk and public health education.</p

Informing the development of an online self-management program for men living with HIV: a needs assessment

Background: The aim of this mixed methods study was to conduct a multifaceted needs assessment to inform the development of an online self-management program for men living with HIV. The objectives were to describe the health-related quality of life for men living with HIV, the impact of living with HIV, and the perceived problem areas and service and support needs of these men. The needs assessment was conducted in accordance with the PRECEDE model for health promotion program planning.Methods: A survey assessing the quality of life of men living with HIV (n = 72) was conducted and results were compared to Australian normative data. Focus groups were also undertaken with men living with HIV (n = 11) and a multidisciplinary team of service providers working in the area of HIV (n = 11). Focus groups enabled an in-depth description of the impact of HIV on quality of life and perceived problem areas in daily life.Results: HIV-positive men experience significantly lower quality of life when compared with Australian normative data, particularly in those domains concerned with social and emotional aspects of quality of life. Qualitative focus groups yielded an overarching theme ‘The psychosocial impact of HIV’ which contained three sub-themes; (1) Life before and after HIV – a changed identity and its repercussions; (2) Resilience and the importance of social support; (3) Negotiating the practicalities – intimate relationships and disclosure.Conclusions: The findings from this needs assessment highlight the need to target socio-emotional contexts of HIV positive men’s daily lives to improve quality of life and well-being. Intervention priorities for the proposed online self-management program include: (1) managing the emotional impact of HIV; (2) disclosing HIV status to family and friends; (3) maintaining social connectedness; (4) managing HIV within intimate relationships; and (5) disclosure of HIV status to intimate partners

HealthMap: a cluster randomised trial of interactive health plans and self-management support to prevent coronary heart disease in people with HIV

BACKGROUND: The leading causes of morbidity and mortality for people in high-income countries living with HIV are now non-AIDS malignancies, cardiovascular disease and other non-communicable diseases associated with ageing. This protocol describes the trial of HealthMap, a model of care for people with HIV (PWHIV) that includes use of an interactive shared health record and self-management support. The aims of the HealthMap trial are to evaluate engagement of PWHIV and healthcare providers with the model, and its effectiveness for reducing coronary heart disease risk, enhancing self-management, and improving mental health and quality of life of PWHIV. METHODS/DESIGN: The study is a two-arm cluster randomised trial involving HIV clinical sites in several states in Australia. Doctors will be randomised to the HealthMap model (immediate arm) or to proceed with usual care (deferred arm). People with HIV whose doctors are randomised to the immediate arm receive 1) new opportunities to discuss their health status and goals with their HIV doctor using a HealthMap shared health record; 2) access to their own health record from home; 3) access to health coaching delivered by telephone and online; and 4) access to a peer moderated online group chat programme. Data will be collected from participating PWHIV (n = 710) at baseline, 6 months, and 12 months and from participating doctors (n = 60) at baseline and 12 months. The control arm will be offered the HealthMap intervention at the end of the trial. The primary study outcomes, measured at 12 months, are 1) 10-year risk of non-fatal acute myocardial infarction or coronary heart disease death as estimated by a Framingham Heart Study risk equation; and 2) Positive and Active Engagement in Life Scale from the Health Education Impact Questionnaire (heiQ). DISCUSSION: The study will determine the viability and utility of a novel technology-supported model of care for maintaining the health and wellbeing of people with HIV. If shown to be effective, the HealthMap model may provide a generalisable, scalable and sustainable system for supporting the care needs of people with HIV, addressing issues of equity of access.<br /

The positive outlook study- a randomised controlled trial evaluating the effectiveness of an online self-management program targeting psychosocial issues for men living with HIV: a study protocol

Background: The emergence of HIV as a chronic condition means that people living with HIV are required to takemore responsibility for the self-management of their condition, including making physical, emotional and socialadjustments. This paper describes the design and evaluation of Positive Outlook, an online program aiming toenhance the self-management skills of gay men living with HIV.Methods/design: This study is designed as a randomised controlled trial in which men living with HIV in Australiawill be assigned to either an intervention group or usual care control group. The intervention group willparticipate in the online group program ‘Positive Outlook’. The program is based on self-efficacy theory and uses aself-management approach to enhance skills, confidence and abilities to manage the psychosocial issues associatedwith HIV in daily life. Participants will access the program for a minimum of 90 minutes per week over seven weeks.Primary outcomes are domain specific self-efficacy, HIV related quality of life, and outcomes of health education.Secondary outcomes include: depression, anxiety and stress; general health and quality of life; adjustment to HIV;and social support. Data collection will take place at baseline, completion of the intervention (or eight weeks postrandomisation) and at 12 week follow-up.Discussion: Results of the Positive Outlook study will provide information regarding the effectiveness of onlinegroup programs improving health related outcomes for men living with HIV

Motherhood and HIV positive women in Australia: papers from the HIV Futures I and II surveys and interviews

INTRODUCTION Motherhood and HIV positive women in Australia collects together as a report three conference papers delivered between 1999 and 2001. This report is aimed at health service providers, policy makers and people living with HIV and AIDS. It details empirical information and informed discussion about the ways motherhood is understood amongst HIV positive women in Australia, and how this affects their lives. It is a background briefing document that supports critical reflection on specific aspects of the experience of women living with HIV in Australia. ACKNOWLEDGEMENTS The conference papers and posters reproduced here are derived primarily from the HIV Futures I and II Studies. These studies are major research projects conducted over several years (1997-2000) and have involved a number of researchers in gathering and analysing quantitative and qualitative data. Readers will be aware of the quantitative arm of the Studies which has produced a number of major reports since 1998: the two HIV Futures reports on people living with HIV in Australia, reports on women and HIV in Australia, state-based reports, and reports on heterosexual men and haemophiliacs and HIV infection. These quantitative reports are now accompanied by an increasing number of qualitative reports that include analyses based on both the HIV Futures I and II Surveys and a set of associated interviews carried out between 1997 and 2001. Research projects of this size, which are carried out over a number of years, involve many researchers and many more research respondents. The HIV Futures Surveys were completed in 1997 (n=925) and 1999 (n=924). This research is continuing. The HIV Futures 3 Survey was carried out in Australia in 2001-2002. At about the same time, the HIV Futures NZ Survey was administered for the first time in New Zealand. Reports from these surveys will appear throughout 2002. The Australian HIV Futures 3 Survey will again be accompanied by a set of interviews, which will in turn receive qualitative analysis. All this research has been made possible through a Collaborating Centre grant from the Department of Health and Ageing. We gratefully acknowledge the participation of all the survey respondents and interviewees 1997-2001. These respondents constitute a representative sample of all people living with HIV in Australia. The survey is large and demanding to complete. Its representativeness relies totally on the generosity and willingness of respondents and the efforts made by supportive organisations and individuals to reach as many people living with HIV as possible

The journey continues: women living with HIV/AIDS in Australia

There are nearly 20 million women living with HIV/AIDS worldwide, comprising half of the total number of people living with this virus. Like the women overseas, women living with HIV in Australia have diverse in their experiences, values, needs and expectations. This report surveys the diversity of the experiences of HIV positive women

A complex uncertainty: women on health, hope and living with HIV in Australia

Introduction This report is the second from the Living with HIV program that specifically addresses the status of women with HIV/AIDS in Australia. The report comes, as did its predecessor Standing on shifting sand, from a national survey of Australian PLWHA. The HIV Futures II survey is a core component of a broader program of research concerned with the social and psychological experience of living with HIV

A systematic analysis of the needs of people with HIV in Australia: stakeholder views of the key elements for a healthy life

Background: The HealthMap project is developing an intervention to reduce cardiovascular risk in people living with HIV. As part of the formative stages of the intervention design, we sought to understand the needs of people with HIV (PWHIV). Methods: Two concept-mapping workshops with PWHIV (n&le;10), and one with HIV care providers (n&le;6) were conducted. The workshop findings were consolidated into a questionnaire administered to PWHIV (n&le;300) and HIV care providers (n&le;107). Participants were asked to rate the importance of each of 81 presented needs and the degree to which it was currently being met. Results: Workshops provided insights into what PWHIV perceive they need, to live with and manage their condition, and its impact on their life; these included: (1) clinical science research and development; (2) information and support; (3) personal situation; (4) healthcare quality; (5) access to services; (6) access to services specific to ageing; and (7) social justice. Questionnaire results revealed that PWHIV considered information and support, and research and development most important. For providers, healthcare quality, clients\u27 personal situation, and social justice were most important. In terms of unmet needs, PWHIV and providers both highlighted issues in the areas of social justice, and access to aged care services. Conclusions: PWHIV and HIV providers continue to report unmet needs in the areas of social justice and emerging concerns about access to aged care services. Services must continue to address these issues of access and equity

Invisible labour? Tensions and ambiguities of modifying the ‘private’ body: the case of female genital cosmetic surgery

The ‘designer vagina’ is a relatively new phenomenon, becoming part of public discourse only in the late 1990s. Although female genital surgery has a history longer than 150 years, modification has not usually been for aesthetic reasons (Green 2005). Nowadays, cosmetic surgeons promising ‘designer vaginas’ offer to modify all parts of women’s genitals, often to render them more attractive: the labia minora are minimised and made symmetrical (labiaplasty), the clitoral hood is made less prominent (clitoral hood reduction), the labia majora are plumped to make them look more ‘youthful’, and liposuction is available for a ‘fat’ mons pubis (Michala et al. 2012). Normal genital variation among women has been pathologised by describing visible labia minora as ‘hypertrophic’ (Miklos and Moore 2008). Simone Weil Davis (2002) quotes a cosmetic surgeon as telling her that ‘the ideal look for labia minora was not only minimal and not extended but also symmetrical, homogenously pink and not wavy’