Health professionals' and beauty therapists' perspectives on female genital cosmetic surgery: an interview study.

BACKGROUND: Female genital cosmetic surgery (FGCS) changes the structure and appearance of healthy external genitalia. We aimed to identify discourses that help explain and rationalise FGCS and to derive from them possibilities for informing clinical education. METHODS: We interviewed 16 health professionals and 5 non-health professionals who deal with women's bodies using a study-specific semi-structured interview guide. We analysed transcripts using a three-step iterative process: identifying themes relevant to indications for FGCS, identifying the discourses within which they were positioned, and categorising and theorising discourses. RESULTS: We identified discourses that we categorised within four themes: Diversity and the Normal Vulva (diversity was both acknowledged and rejected); Indications for FGCS (Functional, Psychological, Appearance); Ethical Perspectives; and Reasons Women Seek FGCS (Pubic Depilation, Media Representation, Pornography, Advertising Regulations, Social Pressure, Genital Unfamiliarity). CONCLUSIONS: Vulvar aesthetics constitute a social construct to which medical practice and opinion contribute and by which they are influenced; education and reform need to occur on all fronts. Resources that not only establish genital diversity but also challenge limited vulvar aesthetics could be developed in consultation with women, healthcare practitioners, mental health specialists, and others with knowledge of social constructs of women's bodies.

Pathologising diversity: medical websites offering female genital cosmetic surgery in Australia.

Female genital cosmetic surgery (FGCS) is increasingly popular. Medical organisations report concern about adverse outcomes and inadequate clinical indications. Given the Internet's role in health decisions, we aimed to discover what was being communicated about FGCS on Australian provider websites. Thematic analysis of 31 prominent websites identified six themes: seeking aesthetic perfection; resisting natural diversity; gaining from FGCS; indications for surgery; a simple procedure; and ethical practice. Desirable vulvas were represented as 'neat' and 'youthful'. Sites promoted a discourse in which to be 'feminine' means having no visible sex organs, consistent with the historical repression of women's sexuality. FGCS was constructed as a simple and empowering solution, improving women's comfort, hygiene, self-esteem and sexual relationships. The apparent primary concern was commercial. Attention was rarely paid to ethics. Sites reinforced women's responsibility to strive for aesthetic perfection, implied that vulvar diversity is pathological, made unfounded claims for the benefits of FGCS and downplayed adverse consequences. Findings have implications for public health and medical authorities in countries where FGCS is practised and advertised. Enforcing the first do no harm principle would reduce websites' capacity to promote discourses and practices that damage women's bodies and wellbeing.

Recruiting people with HIV to an online self-management support randomised controlled trial: barriers and facilitators.

Background Recruitment of people to randomised trials of online interventions presents particular challenges and opportunities. The aim of this study was to evaluate factors associated with the recruitment of people with HIV (PWHIV) and their doctors to the HealthMap trial, a cluster randomised trial of an online self-management program. METHODS: Recruitment involved a three-step process. Study sites were recruited, followed by doctors caring for PWHIV at study sites and finally PWHIV. Data were collected from study sites, doctors and patient participants. Factors associated with site enrolment and patient participant recruitment were investigated using regression models. RESULTS: Thirteen study sites, 63 doctor participants and 728 patient participants were recruited to the study. Doctors having a prior relationship with the study investigators (odds ratio (OR) 13.3; 95% confidence interval (CI) 3.0, 58.7; P = 0.001) was positively associated with becoming a HealthMap site. Most patient participants successfully recruited to HealthMap (80%) had heard about the study from their HIV doctor. Patient enrolment was associated with the number of people with HIV receiving care at the site (ß coefficient 0.10; 95% CI 0.04, 0.16; P = 0.004), but not with employing a clinic or research nurse to help recruit patients (ß coefficient 55.9; 95% CI -2.55, 114.25; P = 0.06). CONCLUSION: Despite substantial investment in online promotion, a previous relationship with doctors was important for doctor recruitment, and doctors themselves were the most important source of patient recruitment to the HealthMap trial. Clinic-based recruitment strategies remain a critical component of trial recruitment, despite expanding opportunities to engage with online communities.

The systematic development of a complex intervention: HealthMap, an online self-management support program for people with HIV.

BACKGROUND: Despite persistent calls for HIV care to adopt a chronic care approach, few HIV treatment services have been able to establish service arrangements that prioritise self-management. To prevent cardiovascular and other chronic disease outcomes, the HealthMap program aims to enhance routine HIV care with opportunities for self-management support. This paper outlines the systematic process that was used to design and develop the HealthMap program, prior to its evaluation in a cluster-randomised trial. METHODS: Program development, planning and evaluation was informed by the PRECEDE-PROCOEDE Model and an Intervention Mapping approach and involved four steps: (1) a multifaceted needs assessment; (2) the identification of intervention priorities; (3) exploration and identification of the antecedents and reinforcing factors required to initiate and sustain desired change of risk behaviours; and finally (4) the development of intervention goals, strategies and methods and integrating them into a comprehensive description of the intervention components. RESULTS: The logic model incorporated the program's guiding principles, program elements, hypothesised causal processes, and intended program outcomes. Grounding the development of HealthMap on a clear conceptual base, informed by the research literature and stakeholder's perspectives, has ensured that the HealthMap program is targeted, relevant, provides transparency, and enables effective program evaluation. CONCLUSIONS: The use of a systematic process for intervention development facilitated the development of an intervention that is patient centred, accessible, and focuses on the key determinants of health-related outcomes for people with HIV in Australia. The techniques used here may offer a useful methodology for those involved in the development and implementation of complex interventions.

Women's Experiences of Pornography: A Systematic Review of Research Using Qualitative Methods.

Given the proliferation of pornography in personal, relational, and social realms, it is vital to understand women's experiences of this accessible, stimulating, and versatile sexual material. We therefore conducted the first systematic review of research using qualitative methods published in English in peer-reviewed journals. Our search of five databases yielded 22 eligible articles. Thematic analysis of results revealed four broad themes: women encountering pornography, pornography and the self, pornography in the context of relationships, and making sense of pornography. Discussion of themes and subthemes included reflections on women's explanations of intentional and unintentional encounters with pornography, conflicted perceptions of themselves in relation to female pornography actors, diverse perceived effects of pornography on intimate relationships, and tensions between women's arousal to pornography and their values. It was evident that women's experiences of pornography are complex and nuanced, often paradoxical, varying among and within individuals. Our synthesis of results and assessment of limitations suggest (a) that researchers need to define what they mean by pornography and specify any content used in their research and (b) that understanding would be enriched by research that is culturally contextualized and acknowledges public discourses about pornography.

Improving the provision of services to young people from refugee backgrounds with comorbid mental health and substance use problems: addressing the barriers.

BACKGROUND: South Australia (SA) has resettled 151,134 refugees in the last ten years (Department of Immigration and Border Protection, Settlement reporting facility, 2014). Northern metropolitan Adelaide, an area which experiences significant social disadvantage, has received a significant number of (predominantly young) refugees. Research indicates that refugee youth are at elevated risk of mental health (MH) and alcohol and other drug (AOD) problems. These factors, along with the low socio-economic status of northern Adelaide, the number of refugee youth residing there, and the added complexity of treating comorbid MH and AOD problems (comorbidity) prompted this research. We investigated the barriers and facilitators to culturally responsive comorbidity care for these youth and whether the MH and AOD services were equipped to provide such support. METHODS: This mixed-methods study employed semi-structured interviews with refugee youth and service providers and an online survey with managers of services. Thirty participants (15 refugee youth, 15 service providers) took part in the semi-structured interviews and 56 (40 complete, 16 partially-complete) in the survey. RESULTS: Thematic analysis of the interview data revealed the most commonly reported barriers related to four broad areas: (1) organisational and structural, (2) access and engagement, (3) treatment and service delivery, and (4) training and resources. Survey data supported the barriers identified in the qualitative findings. CONCLUSIONS: This research highlights significant gaps in the response of MH and AOD services to refugee youth with comorbidity. Based on the findings, ways of overcoming the barriers are discussed, and are of particular relevance to policy makers, organisations and clinicians.

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=10), and one with HIV care providers (n=6) were conducted. The workshop findings were consolidated into a questionnaire administered to PWHIV (n=300) and HIV care providers (n=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' 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.

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. TRIAL REGISTRATION: Universal Trial Number (UTN) U111111506489; ClinicalTrial.gov Id NCT02178930 submitted 29 June 2014.

The Positive Outlook Study: A Randomised Controlled Trial Evaluating Online Self-Management for HIV Positive Gay Men.

The aim of this paper was to evaluate the effectiveness of an online self-management program in improving health outcomes and well-being for gay men living with HIV in Australia. The online Positive Outlook Program was based on self-efficacy theory and used a self-management approach to enhance HIV-positive gay men's skills, confidence and abilities to manage the psychosocial issues associated with HIV in daily life. The 7-week program was delivered in closed groups and comprised information modules, action-planning activities, moderated discussion boards, and weekly peer-facilitated 'live chats'. A randomised controlled trial was conducted to establish the effectiveness of the Positive Outlook program compared to a 'usual care' control. Participants were HIV-positive gay men 18 years or older living in Australia. Primary outcomes were evaluated at three time-points (baseline, post-intervention and 12-week's post-intervention follow-up) and included HIV-related quality of life (PROQOL-HIV), outcomes of health education (HeiQ) and HIV specific self-efficacy (Positive Outlook Self-Efficacy Scale). A total of 132 gay men with HIV in Australia were randomly allocated to the intervention (n = 68) or usual care control (n = 64) groups. Maximum likelihood marginal-linear modelling indicated significant improvement in the intervention group on the PROQOL-HIV subscales of body change (p = 0.036), social relationships (p = 0.035) and emotional distress (p = 0.031); the HeiQ subscales of health-directed activity (p = 0.048); constructive attitudes and approaches (p = 0.015); skill and technique acquisition (p = 0.046) and health service navigation (p = 0.008); and the Positive Outlook Self-Efficacy Scale on the subscales of relationships (p = 0.019); social participation (p = 0.006); and emotions (p = 0.041). Online delivery of self-management programs is feasible and has the potential to improve quality of life, self-management skills and domain specific self-efficacy for gay men with HIV.

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.

BACKGROUND: Women 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. METHODS: Eight 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. RESULTS: Five 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. CONCLUSIONS: Further research is needed to contribute to knowledge of the role played by the internet in the promotion and normalisation of female genital cosmetic surgery.

Online self-management for gay men living with HIV: a pilot study.

UNLABELLED: Background The aim of this pilot study was to assess the feasibility, acceptability and effectiveness of Positive Outlook, an online self-management program for gay men living with HIV in Australia. METHODS: Two pilot studies were conducted, a small feasibility study (Pilot 1) followed by a pilot randomised controlled study (Pilot 2). Pilot 1 employed a pre and post-test design and included 10 men. Within- and between-group differences were evaluated in Pilot 2, which involved 37 participants randomly assigned to receive the Positive Outlook Program or usual care. We report on feasibility, acceptability and a range of preliminary efficacy outcomes, including health education impact, HIV-related quality of life and HIV-related self-efficacy. RESULTS: The program was well accepted by participants with some decline in engagement with the discussion boards witnessed over the duration of the program. Overall, intervention group participants demonstrated improvements in the majority of efficacy outcome measures, including HIV-related quality of life, self-efficacy, self-management skills, social support and adjustment to HIV. CONCLUSION: These pilot studies demonstrated that an online program to facilitate self-management among gay men living with HIV is both feasible and well accepted by participants who persisted with the program per protocol. Preliminary data suggest that the Positive Outlook program has the potential to enhance participants' quality of life, self-efficacy and health related outcomes, and demonstrates the need for further study with a larger sample.

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.

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 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/DESIGN: This 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. DISCUSSION: Results 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 REGISTRATION: ACTRN12612000642886.

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

BACKGROUND: 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. DISCUSSION: 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. SUMMARY: 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.

'The old-fashioned way': conception and sex in serodiscordant relationships after ART.

This paper explores heterosexual women's accounts of conception and sex within serodiscordant relationships in the period after the advent of Anti-Retroviral Treatment in Australia. It utilises Goffman's 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 women's status thereby reinforcing the woman's 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 partner's and their families if their partner did seroconvert.

HIV-positive women in Australia explain their use and non-use of antiretroviral therapy in preventing mother-to-child transmission.

This paper explores HIV-positive women's accounts of their use and non-use of treatments for the prevention of mother-to-child transmission. In-depth interviews were conducted in 2001 with 34 HIV-positive women who were diagnosed during their childbearing years. This paper reports on the 16 women who gave birth after being diagnosed with HIV. Some women reported experiencing debilitating side-effects of antiretroviral (ARV) therapy, and all were aware that the history of HIV therapy was not one of clear, consistent and benevolent effectiveness. It was evident that women wanted the best outcomes for themselves and their babies. Women represented their role vis-a-vis their children as encompassing protection against a medical fraternity that insisted on the use of ARV and prophylaxis without acknowledging the mothers' concerns about toxicity. From the women's perspective, it made sense not to let their babies become experimental subjects when long-term effects were unknown. To maximise the benefit of ARV therapy to mothers and babies, thereby reducing the risk of vertical transmission, it is imperative to understand a woman's explanation of what therapy means to her, and advisable to presume that she wants the best for her baby. Such an approach will facilitate better communication and encourage clinicians and patients to work towards a shared goal.

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.

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.