Karalyn McDonald

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

BackgroundThe 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.DiscussionWomen 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.SummaryThe 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.

Australian women living with HIV/AIDS are more sceptical than men about antiretroviral treatment

A national survey of 925 people living with HIV/AIDS (PLWHA) in Australia conducted in the second half of 1997 showed that the proportion of HIV-positive women (61%) reporting they currently used antiretroviral treatment was significantly lower than that of men (79%). Women (37%) were also significantly less likely than men (59%) to report that they believe new treatments have brought hope and better prospects for PLWHA. Thirteen women and 63 men who completed the survey also participated in an in-depth interview which further explored the use of, and attitudes to, antiretroviral drugs for HIV/AIDS and their impact on personal relationships and work-related issues. Taken together, the survey and interview data suggest that male PLWHA have positive albeit qualified views about antiretrovirals and believe their health and future prospects have been improved by advances in treatments. In contrast, female PLWHA were sceptical about treatments and were unwilling to link their future prospects to the outcomes of antiretroviral therapy. Multivariate analysis of the correlates of attitudes to treatments revealed gender to be a significant independent predictor of more positive attitudes. These results are important considerations for health care workers in ensuring that HIV treatment services become more acceptable to HIV-positive women.

My body, my life, my choice: practices and meanings of complementary and alternative medicine among a sample of Australian people living with HIV/AIDS and their practitioners

Abstract In this study we examine the sociocultural meaning and use of complementary and alternative medicine (CAM) by nine people living with HIV/AIDS (PLWHA) and four CAM practitioners. Analysis revealed five themes: focus on health not illness; resistance to antiretroviral therapy and adherence; allopathic medicine as narrow; difficulty disclosing to doctors; and a continuum of CAM that sometimes included conventional medicine and sometimes excluded it entirely. Literature on PLWHA in the West commonly describes them as sophisticated health consumers. We explore the concepts of individual responsibility in relation to health, holism, control and well-being in the context of CAM. We also consider the meaning and significance of CAM and western medicine to comment on the contemporary experience of HIV, including the possible impact of stigma and the perceived limits of allopathic medicine among some PLWHA. Understanding this will enable better insight into the treatment choices of PLWHA, particularly those who may be described as sceptical of conventional medical science.

‘The old-fashioned way’: conception and sex in serodiscordant relationships after ART

This paper explores heterosexual womens accounts of conception and sex within serodiscordant relationships in the period after the advent of Anti-Retroviral Treatment in Australia. It utilises Goffmans theory of stigma and narrative identity theory as a framework for analysis. Six women had planned and conceived pregnancies, four had an unexpected pregnancy and one was attempting to conceive. Accounts of conception usually consisted of a story that involved unprotected sex, once, for the purpose of conceiving. This included what they perceived to be an acceptable risk; one they were willing to take for the desired outcome. Two women gave accounts of artificial insemination. The conception story was usually constructed for the benefit of family and friends aware of the womens status thereby reinforcing the womans identity as responsible and moral. However, most women revealed their partner did not like condoms and used them sporadically or not at all, directly contradicting the ‘conception story’. To justify their actions as informed and responsible, women constructed accounts around low viral load and female-to-male transmission. But a consequence of limited or no condom use was that some women reported worrying about ensuing stigma from their partners and their families if their partner did seroconvert.

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

BackgroundThe emergence of HIV as a chronic condition means that people living with HIV are required to take more responsibility for the self-management of their condition, including making physical, emotional and social adjustments. This paper describes the design and evaluation of Positive Outlook, an online program aiming to enhance the self-management skills of gay men living with HIV.Methods/designThis study is designed as a randomised controlled trial in which men living with HIV in Australia will be assigned to either an intervention group or usual care control group. The intervention group will participate in the online group program ‘Positive Outlook’. The program is based on self-efficacy theory and uses a self-management approach to enhance skills, confidence and abilities to manage the psychosocial issues associated with 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 post randomisation) and at 12 week follow-up.DiscussionResults of the Positive Outlook study will provide information regarding the effectiveness of online group programs improving health related outcomes for men living with HIV.Trial registrationACTRN12612000642886.

Chronic Disease Self-Management by People With HIV

As HIV has transitioned into a chronic disease, reappraisal of clinical management has occurred with chronic disease self-management (CDSM) as one possibility. However, despite extensive work on CDSM across a range of diseases, little attention has focused on psychosocial contexts of the lives of people for whom programs are intended. This article reports semi-structured interviews used to explore health practices and motivations of 33 people with HIV (PWHIV) in Australia. Within participants’ accounts, different forms of subjectivity and agency emerged with implications for how they understood and valued health-related behaviors. Four themes arose: health support and disclosure, social support and stigma, employment/structure, and health decisions beyond HIV. The experience of stigma and its intersection with CDSM remains relatively un-chartered. This study found stigma shapes agency and engagement with health. Decisions concerning health behaviors are often driven by perceived social and emotional benefit embedded in concerns of disclosure and stigma.

The contribution of online content to the promotion and normalisation of female genital cosmetic surgery: A systematic review of the literature

BackgroundWomen considering female genital cosmetic surgery (FGCS) are likely to use the internet as a key source of information during the decision-making process. The aim of this systematic review was to determine what is known about the role of the internet in the promotion and normalisation of female genital cosmetic surgery and to identify areas for future research.MethodsEight social science, medical, and communication databases and Google Scholar were searched for peer-reviewed papers published in English. Results from all papers were analysed to identify recurring and unique themes.ResultsFive papers met inclusion criteria. Three of the papers reported investigations of website content of FGCS providers, a fourth compared motivations for labiaplasty publicised on provider websites with those disclosed by women in online communities, and the fifth analysed visual depictions of female genitalia in online pornography. Analysis yielded five significant and interrelated patterns of representation, each functioning to promote and normalise the practice of FGCS: pathologisation of genital diversity; female genital appearance as important to wellbeing; characteristics of women’s genitals are important for sex life; female body as degenerative and improvable through surgery; and FGCS as safe, easy, and effective. A significant gap was identified in the literature: the ways in which user-generated content might function to perpetuate, challenge, or subvert the normative discourses prevalent in online pornography and surgical websites.ConclusionsFurther research is needed to contribute to knowledge of the role played by the internet in the promotion and normalisation of female genital cosmetic surgery.

Informing the Development of an Online Self-Management Program for Men Living with HIV: A Needs Assessment

BackgroundThe 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.MethodsA 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.ResultsHIV-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.ConclusionsThe 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.

HIV Futures II: Aboriginal and Torres Strait Islander people living with HIV

This report provides details about Aboriginal and Torres Strait Islander Australians living with HIV who filled in and returned questionnaires as part of the HIV Futures II survey. The HIV Futures II survey was conducted by the Living with HIV research program at the Australian Research Centre in Sex, Health and Society, La Trobe University, in the second half of 1999. The survey asked PLWHA about their health, use of antiretroviral and complementary treatments, use of information and support services, and their housing and financial situation. It also asked about sex and relationships, peoples social supports, recreational drug use, work situation and future planning.

Do You Tell Your Kids? What Do You Tell Your Kids? When Do You Tell Your Kids? How Do You Tell Your Kids? HIV-Positive Mothers, Disclosure and Stigma

HIV-positive mothers face the complex and challenging decision of whether to disclose their HIV status to their children. Not only do HIV-positive mothers worry about the potential emotional burden this disclosure may impose on their children, but there is also the risk of unwanted disclosure by children and the possibility of ensuing stigma. When thinking about the disclosure of one’s HIV status to another, stigma is implicit. In-depth interviews were conducted in 2001 with 34 HIV-positive women in Australia who were diagnosed during their childbearing years, 28 of whom were mothers. In this chapter, I explore HIV-positive women’s accounts of disclosure and how women construct both public and private accounts of living with HIV as a way of deriving meaning from their diagnosis as well as a way of managing disclosure and its potential ramifications. I also examine the role of stigma in the decisions made about disclosure to children as well as family, friends and broader social networks.