Mothers' experiences of wellbeing and coping while living with rheumatoid arthritis : a qualitative study

Background: Rheumatoid arthritis (RA) can result in difficulties for mothers when undertaking daily care activities and increased psychological distress. However, few studies have examined how women with RA subjectively experience coping and wellbeing as part of their motherhood. Methods: Twenty mothers with a diagnosis of RA and a dependent child (18 years or younger) who were living in Australia took part in a semi-structured interview between June and November 2017. Purposive sampling was undertaken to include participants across degree of current RA severity, number and age of children, and having received a diagnosis before or after a first child to take account of variability across these experiences. A qualitative thematic analysis was conducted on the interview transcripts. Results: The following themes were identified: ‘Burden and complexity in the mothering role’, ‘Losing control: Women’s experiences of distress’, and ‘Adjusting and letting go: Women’s experiences of wellbeing’. Experiences of distress, including feelings of failure, were associated with accounts of a loss of control over mothering practices among women, regardless of child age. In contrast, accounts of adjusting mothering practices and relinquishing control were associated with reports of enhanced wellbeing. In addition, some mothers reported greater ease due to increased independence of older children. The absence of social support exacerbated burden and distress in the women’s accounts, while the availability of support alleviated burden and was associated with reports of wellbeing. Conclusion: Health professionals and services can provide support to mothers with RA by addressing feelings of failure, acknowledging strategies of adjustment and letting go, and encouraging access to social support

"I treat my daughters not like my mother treated me" : migrant and refugee women's constructions and experiences of menarche and menstruation

Menstruation is a material reality at some point in most women’s lives. Yet, the discursive meaning assigned to menstruating bodies and the way in which they are experienced is dependent on the sociocultural and historical spaces which they occupy (Lee and Sasser-Coen 1996, 13). Across cultural contexts, menarche is constructed as a symbolic transition from childhood to womanhood, a period of growth and change, often linked with sexual maturation (Lee 2009, 622). While menstrual activists, artists, poets, and women’s rights organizations are challenging negative representations and practices surrounding menstruation (Bobel 2010, 42), dominant discourses often still portray menstruation as something dirty and disgusting, and a bodily function to be silenced and concealed (Brantelid, Nilvér, and Alehagen 2014, 606; Mason et al. 2013, 4; see also Wood [Chapter 25] in this volume)

Managing the premenstrual body : a body mapping study of women's negotiation of premenstrual food cravings and exercise

Background: Women’s eating behaviours and exercise patterns have been found to fluctuate across the menstrual cycle, manifested by premenstrual food cravings and reduced exercise. However, the meaning and consequences of premenstrual changes in eating and exercise behaviours remains underexplored. The aim of this qualitative study was to explore how women who feel negatively about their premenstrual bodies construct and experience premenstrual changes to eating and exercise practices, which disrupt their usual patterns of body management. Methods: Four hundred and sixty women aged 18–45 completed an online survey in response to a Facebook advertisement targeted at women who feel negatively about their bodies during the premenstrual phase of the cycle. Participants reported moderate premenstrual distress, high body shame and high risk of disordered eating attitudes using standardised measures. Sixteen women reporting rich accounts of premenstrual body dissatisfaction were invited to participate in body-mapping, involving visually illustrating experiences on a life-sized outline of the body, followed by a telephone interview. Thematic analysis was used to explore qualitative survey, interview, and body mapping data. Results and discussion: Results found that outside of the premenstrual phase these women engaged in restrictive eating and intensive exercise behaviours, which were disrupted by premenstrual cravings, hunger, fatigue, pain and feeling physically uncomfortable. For a minority of the women, this facilitated self-care in reducing the strict management of their bodies during the premenstrual phase. Others experienced feelings of guilt, shame, self-disgust and pushed their bodies physically through increased exercise. Conclusions: These findings emphasise the need to acknowledge changes in body management across the menstrual cycle, with implications for women’s mental health and feelings about the self. Internalisation of pressures placed on women to manage their bodies through restrictive eating behaviours and rigorous exercise plays a role in women’s premenstrual body dissatisfaction and distress. Plain English summary: The current study aimed to explore how women who feel negatively about their premenstrual bodies construct and experience premenstrual changes to eating and exercise practices. Outside of the premenstrual phase these women engaged in restrictive eating and intensive exercise behaviours which were disrupted by premenstrual cravings, hunger, fatigue, pain and feeling physically uncomfortable. Some women allowed themselves to take a premenstrual break from their usual strict eating and exercise behaviours, whereas others felt guilt, shame, self-disgust and physically pushed their bodies through increased exercise. These findings emphasise that changes to eating and exercise behaviours across the menstrual cycle and pressures placed on women to manage their eating and exercise behaviours have implications for women’s premenstrual distress and body dissatisfaction

Experiences of primary healthcare workers in Australia towards women and girls living with female genital mutilation/cutting (FGM/C) : a qualitative study

Female genital mutilation/cutting (FGM/C) is a harmful cultural practice with significant health consequences for affected women and girls. Due to migration and human mobility, an increasing number of women with FGM/C are presenting to healthcare facilities of western countries (including Australia) where the practice is non-prevalent. Despite this increase in presentation, the experiences of primary healthcare providers in Australia engaging and caring for women/girls with FGM/C are yet to be explored. The aim of this research was to report on the Australian primary healthcare providers’ experiences of caring for women living with FGM/C. A qualitative interpretative phenomenological approach was utilised and convenience sampling was used to recruit 19 participants. Australian primary healthcare providers were engaged in face-to-face or telephone interviews, which were transcribed verbatim and thematically analysed. Three major themes emerged, which were: exploring knowledge of FGM/C and training needs, understanding participants’ experience of caring for women living with FGM/C, and mapping the best practice in working with women. The study shows that primary healthcare professionals had basic knowledge of FGM/C with little or no experience with the management, support, and care of affected women in Australia. This impacted their attitude and confidence to promote, protect, and restore the target population’s overall FGM/C-related health and wellbeing issues. Hence, this study highlights the importance of primary healthcare practitioners being skilled and well-equipped with information and knowledge to care for girls and women living with FGM/C in Australia

Editorial: Cancer prevention, treatment and survivorship in the LGBTQIA community

Sexuality and gender minorities (SGM), including those who identify as lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI+), constitute a growing and underserved population in the realm of cancer care. This community faces a greater burden of cancer and encounters distinctive psychosocial challenges. These challenges include elevated rates of cancer-related distress and sexual concerns, reduced quality of life (QOL), and diminished support from their biological families, when compared to non-LGBTQI+ individuals with cancer and their caregivers. Concurrently, LGBTQI+ individuals also experience heightened dissatisfaction with cancer healthcare, which encompasses difficulties in communication with healthcare professionals (HCPs), barriers in accessing cancer services, and a lack of LGBTQI+-inclusive cancer information or support. Revealing their sexual orientation or gender identity (SOGI) to HCPs is a significant source of distress due to concerns about potential hostility or cis-heteronormative biases that might result in substandard care. However, if SOGI is not disclosed, LGBTQI+ individuals with cancer are more likely to report unmet needs, a sense of invisibility, dissatisfaction with care, and poor psychological well-being

Resisting the mantle of the monstrous feminine : women's construction and experience of premenstrual embodiment

The female reproductive body is positioned as abject, as other, as site of defciency and disease, the epitome of the ‘monstrous feminine.’ Premenstrual change in emotion, behavior or embodied sensation is positioned as a sign of madness within, necessitating restraint and control on the part of the women experiencing it (Ussher 2006). Breakdown in this control through manifestation of ‘symptoms’ is diagnosed as PMS (Premenstrual Syndrome) or PMDD (Premenstrual Dysphoric Disorder), a pathology deserving of ‘treatment.’ In this chapter, we adopt a feminist material-discursive theoretical framework to examine the role of premenstrual embodiment in relation to women’s adoption of the subject position of monstrous feminine, drawing on interviews we have conducted with women who self-diagnose as ‘PMS sufferers.’ We theorize women’s self-positioning as subjectifcation, wherein women take up cultural discourse associated with idealized femininity and the reproductive body, resulting in self-objectifcation, distress, and self-condemnation. However, women can resist negative cultural constructions of premenstrual embodiment and the subsequent self-policing. We describe the impact of women-centered psychological therapy which increases awareness of embodied change, and leads to greater acceptance of the premenstrual body and greater self-care, which serves to reduce premenstrual distress

'You are at their mercy' : disclosure and trust in LGBTQI+ cancer care

Background Lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI+) populations represent an ‘ignored epidemic’ and a ‘growing, medically underserved population’ in cancer care, with preliminary evidence that these communities experience disproportionate cancer burdens and unique psychosocial challenges (e.g. lower satisfaction with care, greater cancer-related distress). Methods The Out with Cancer study is the first international study to explore the experiences of LGBTQI+ people diagnosed with cancer, using a mixed-methods approach (survey, semi-structured and photo-elicitation interviews). This presentation focuses on disclosure and trust in cancer care, from the perspective of LGBTQI+ people with cancer and healthcare professionals. Results LGBTQI+ participants (to date survey n=342; interviews n=105; data collection is ongoing) often reported careful control around disclosure of their sexual and gender identities or intersex variations in cancer care, in part, due to embarrassment, discomfort, and fear of negative reactions. Previous negative healthcare experiences contributed to distrust in cancer care, reluctance to disclose LGBTQI+ status and fears of inequitable treatment. Some participants reported explicit discriminations in cancer care, however, micro-aggressions (e.g. cis-heteronormative assumptions) and systemic absences of services and information tailored to the needs of LGBTQI+ people with cancer were more commonly reported. Healthcare professionals reported lacking confidence working with LGBTQI+ cancer patients, attributed to insufficient knowledge of the needs of these patients, uncertainty of correct terminology, and feeling embarrassed and uncomfortable discussing topics such as sexual needs. Furthermore, healthcare professionals reported lacking information and resources to guide the provision of quality clinical care and decision making with LGBTQI+ patients (e.g. such as the impact of hormone therapies on cancer treatment). Conclusions These findings highlight the need to develop resources for LGBTQI+ people with cancer and healthcare professionals, which facilitate access to information and care that is culturally informed and relevant to the needs of LGBTQI+ communities

The treatment of booking gestational diabetes mellitus (TOBOGM) pilot randomised controlled trial

Background: We piloted a randomised controlled trial (RCT) comparing pregnancy outcomes among women with booking gestational diabetes (GDM) receiving immediate or deferred treatment. Methods: Consecutive, consenting women < 20 weeks gestation, with GDM risk factors attending the hospital book-in clinic, completed an oral glucose tolerance test (OGTT). Clinicians were blinded to OGTT results. Women fulfilling World Health Organisation GDM criteria were randomised to either clinic referral /ongoing treatment (Treated Group n = 11), or no treatment (No Treatment Group n = 10). Women without ‘Booking GDM’ (‘Decoys’ n = 58) and those in the No Treatment Group had a repeat OGTT at 24–28 weeks (with GDM treated if diagnosed). Midwives and mothers were asked to complete surveys and attend focus groups before and after the study respectively regarding their experiences and expectations of the study protocol. Results: Sufficient women completed each step of the RCT. Gestation at OGTT was late at 18 ± 2 weeks with Treated and No Treatment groups largely similar. At 24–28 weeks gestation, GDM was present in 8/9 (89%) in the No Treatment group and 11/56 (20%) Decoys. NICU admission was highest in the Treated group (36% vs 0% p = 0.043), largely due to small for gestational age, and Large for Gestational Age babies greatest in the No Treatment group (0% vs 33% p = 0.030). Conclusion: An RCT deferring ‘Booking GDM’ treatment is feasible. Most women with untreated ‘Booking GDM’ in mid 2nd trimester had GDM at 24–28 weeks. Early treatment may have both benefits and harms. A full RCT is needed

Menstrual Justice: A Human Rights Vision for Australia

In the past year alone, news reports have shown how menstrual injustice is linked to gender inequality, a lack of economic opportunity, poor health outcomes, and human rights violations. Here is a small sampling of the unjust treatment of women and other people who menstruate: locked bathrooms at schools, inadequate supply of free period products, harmful menstruation-avoidance options for athletes, the human and economic costs of the lack of menstruation and menopause employment leave policies, and the mistreatment of people imprisoned who menstruate. To improve women’s equality, we need menstrual justice. Menstrual justice is the achievement of dignity, liberty and equality for people who menstruate, primarily cis women and girls but also transgender men and boys, genderqueer/nonbinary and intersex persons. On the other hand, menstrual injustice is the oppression of people who menstruate simply because they menstruate, and our society does not yet accept and accommodate menstruation as normal. Menstrual injustices can compound the marginalization of persons already subject to other injustices, including young students, low-income persons, persons with disability, Indigenous persons, persons who are imprisoned, and remote and low-wage workers. We need laws that clearly outlaw workplace discrimination and harassment against menstruators, so no one is fired for bleeding on the job or being late to work due to period pain. We need public awareness campaigns and curricular expansion focused on health information and the eradication of menstrual stigma to curb poor menstrual health. We need access to resources and healthcare for residents in institutional settings that supports their autonomy over menstruation and menopause. We need provision of Indigenous intergenerational teaching about menstruation and menopause. Governments have addressed some of these menstrual injustices. For example, all States and Territories provide free product access in schools. Victoria will be providing free product access in public places. Such initiatives are critical and helpful. But they are isolated and do not tackle important pieces of the equality puzzle. The authors are a group of researchers, activists, and policy makers who have created this set of evidence-based recommendations for governments relating to menstruation and menopause. Our concrete recommendations, entitled “Menstrual Justice: A Human Rights Vision for Australia,” call upon Government to do more to fully address menstrual injustices. Our recommendations include the areas of public awareness, curriculum, schools, workplaces, public buildings and housing, institutional settings and discrimination and coercion. Many of these recommendations are no cost or low cost but could have a large impact on gender equality and would improve human rights for women and other people who menstruate