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

Maternal health service utilisation of adolescent women in sub-Saharan Africa : a systematic scoping review

Introduction: Sub-Saharan Africa has the highest rate of adolescent pregnancy in the world. While pregnancy during adolescence poses higher risks for the mother and the baby, the utilisation of maternity care to mitigate the effects is low. This review aimed to synthesise evidence on adolescent mothers’ utilisation of maternity care in Sub-Saharan Africa and identify the key determinant factors that influence adolescent mothers’ engagement with maternity care. Method: A systematic review of scholarly literature involving seven databases: ProQuest, PubMed, EMBASE/Elsevier, SCOPUS, PsycINFO, CINAHL and Infomit was conducted. Studies published in English between 1990 and 2017 that examined Sub-Saharan adolescent mothers’ experiences of utilising biomedical maternity care during pregnancy, delivery and the post-partum period were included. Results: From 296 relevant articles 27 were identified that represent the experience of adolescent mothers’ maternal health service utilisation in Sub-Saharan Africa. The review indicates that maternal health service utilisation in the majority of Sub-Saharan African countries is still low. There is also a wide discrepancy in the use of maternity care services by adolescent mothers across countries in Sub-Saharan Africa. Conclusions: The review reveals that a significant number of adolescents in Sub-Saharan Africa do not access and use maternity services during pregnancy. Several factors from individual to systemic levels contributed to low access and utilisation. This implies that interventions targeting the women, their partners, healthcare professionals, communities and the organisations (local to national) are necessary to improve adolescent mother’s engagement with maternity care in Sub-Saharan Africa

"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)

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

Postnatal care service utilisation in Ethiopia : reflecting on 20 years of demographic and health survey data

Background: Most maternal deaths in the world occur during the postpartum period, especially within the first two days following delivery. This makes postnatal care (PNC) critical to improving the chances of maternal and child survival. Over the past 20 years, the proportion of women receiving antenatal care (ANC) in Ethiopia has increased while the proportion of those receiving PNC has remained low. This study aimed to understand the trends, determinants and urban–rural variations of PNC service utilisation. Methods: This study draws on the Ethiopian Demographic and Health Survey (EDHS) data for the years 2000 (n = 4552), 2005 (n = 4467), 2011 (n = 4445) and 2016 (n = 4275) to estimate the trends and determinants of PNC service utilisation. Multivariate logistic regression models with adjustment for clustering and sampling weights were used to investigate the association between the independent factors, the study factors and PNC service utilisation. Results: Over the twenty-year period of the EDHS, the proportion of Ethiopian women who received PNC services increased from 5.6% (95% CI: 4.6–6.9%) in 2000 to 18.5% (95% CI: 16.4–20.7%) in 2016. Similarly, women who received PNC services in urban areas increased from 15.2% (95% CI: 23.6–30.7%) in 2000 to 47% (95% CI: 60.4–67.3%) in 2016. Women who were in the wealthy quintile, had ANC visits, delivered in a health facility, and delivered by caesarean section were most likely to have PNC. The present study also showed that whilst birth spacing was a significant factor among urban women, wealth index, ANC visits, and perception of health facility distance were significant factors among rural women. Conclusions: The study suggests low levels of utilisation of PNC among Ethiopian women from rural districts. Geographically targeted interventions with a focus on low-socioeconomic rural women, and those with no previous contacts with the health system during pregnancy, are needed to improve PNC in Ethiopi

'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

Crossing the line: Lived experience of sexual violence among trans women of colour from culturally and linguistically diverse (CALD) backgrounds in Australia

The project aim was to increase understanding of the lived experience of being a trans woman of colour living in Australia, in relation to gender transitioning and experiences of sexual violence. The project used a sequential mixed methods design and a feminist intersectional approach to address this aim. The research design, data collection and analysis, and outcomes from the findings were underpinned by principles of integrated knowledge translation, which included input from an advisory group and trans community stakeholders, integrating lived experience into the knowledge production and translation process. Study methods included: thirty-one interviews with trans women of colour, and follow-up interviews with 19 women which included photovoice analysis of thirty-nine online forum threads, with 480 unique posters and 950 comments, in relation to discussion of trans sexual violence a national survey exploring sexual violence and women’s responses to violence that included trans women, cisgender heterosexual women and cisgender lesbian, bisexual or queer women. The research found that trans women of colour living in Australia are more likely than other women to report having been assaulted by a stranger. The report shows that trans women of colour are subject to pervasive violence both outside and inside the home, from verbal violence—such as catcalling—to assaults. As a result, there are very few places where trans women of colour are safe from abuse. This research demonstrates that the absence of culturally competent information and knowledge about transgender experience, accompanied by misinformation, can lead to stigma, prejudice and discrimination, results in unmet health and justice needs for trans women. This can have serious consequences for trans women’s physical and psychological wellbeing. The report includes recommendations for policy and practice

Co‑designed, culturally tailored cervical screening education with migrant and refugee women in Australia : a feasibility study

Background: Participation of culturally and linguistically diverse (CALD) women from migrant and refugee backgrounds in cervical screening is crucial to eliminate cervical cancer as a public health problem within the next 20 years. However, CALD women report low participation in cervical screening. Barriers to participation can be addressed with culturally tailored, community-based programs. There is a need for research to explore the process, feasibility, acceptability and barriers to cultural tailoring in the delivery and evaluation of cervical screening health education. Methods: CALD community health workers took part in a 2 day training program then co-designed, culturally tailored and co-facilitated cervical screening health promotion forums within their communities. Forums were delivered to a total of seven groups, involving 12 sessions and 71 CALD women. The forums were evaluated for feasibility, acceptability, implementation and effectiveness using a survey, interviews and observations. Data were collected from CALD women, facilitators and researchers. Results: The co-design and co-delivery of cervical screening health promotion forums was time and resource intensive however allowed for deeper cultural tailoring resulting in engagement with ‘hard to reach’ CALD women, improved health literacy and intention to screen. Flexibility in the intervention implementation was crucial to ensure forums were responsive to community interests and needs. Online delivery of the forums in response to the COVID-19 pandemic was acceptable to most groups. Conclusions: Co-designed, culturally tailored cervical screening health promotion forums are feasible and acceptable to CALD women, in both face-to-face and online formats. Adjustments to the intervention protocol were recommended to improve future implementation