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Purpose This paper examines the subjective experience of medical interventions on intersex bodies to reduce cancer risk. Methods Twenty-five individuals with intersex variations took part in semi-structured interviews, analysed through thematic discourse analysis. Results Intersex bodies were positioned as inherently sick and in need of modification, with cancer risk legitimating surgical and hormonal intervention. This resulted in embodied shame, with negative impacts on fertility and sexual wellbeing. However, many participants resisted discourses of bio-pathologisation and embraced intersex status. Some medical interventions, such as HRT, were perceived to have increased the risk of cancer. Absence of informed consent, and lack of information about intersex status and the consequences of medical intervention, was positioned as a human rights violation. This was compounded by ongoing medical mismanagement, including health care professional lack of understanding of intersex variations, and the objectification or stigmatization of intersex people within healthcare. The consequence was non-disclosure of intersex status in health contexts and lack of trust in health care professionals. Conclusions The legitimacy of poorly-evidenced cancer risk discourses to justify medical intervention on intersex bodies needs to be challenged. Healthcare practitioners need to be provided with education and training about cultural safety practices for working with intersex people.

Abstract 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.

BackgroundEndometriosis, which affects 1 in 10 people assigned female at birth, is a chronic systemic inflammatory disease with a high symptom burden and adverse socioemotional impacts. There is a need for an accessible, cost-effective, and low-burden intervention to support individuals in managing their endometriosis condition. ObjectiveThis study aimed to co-design and evaluate the acceptability, readability, and quality of a bank of supportive SMS text messages (EndoSMS) for individuals with endometriosis. MethodsIn phase 1 of this mixed method design, 17 consumer representatives (individuals with endometriosis) participated across three 3-hour web-based (Zoom, Zoom Video Communications, Inc) focus groups. The transcripts were encoded and analyzed thematically. In phase 2, consumer representatives (n=14) and health care professionals (n=9) quantitatively rated the acceptability, readability, and appropriateness of the developed text messages in a web-based survey. All the participants initially completed a background survey assessing sociodemographic and medical factors. ResultsConsumer representatives demonstrated diverse sociodemographic characteristics (Mage=33.29), varying in location (metropolitan vs rural or regional), employment, and relationship and educational statuses. Participants reached a consensus regarding the delivery of 4 SMS text messages per week, delivered randomly throughout the week and in one direction (ie, no reply), with customization for the time of day and use of personal names. Seven main areas of unmet need for which participants required assistance were identified, which subsequently became the topic areas for the developed SMS text messages: emotional health, social support, looking after and caring for your body, patient empowerment, interpersonal issues, general endometriosis information, and physical health. Through a web-based survey, 371 co-designed SMS text messages were highly rated by consumers and health care professionals as clear, useful, and appropriate for individuals with endometriosis. Readability indices (Flesch-Kincaid scale) indicated that the SMS text messages were accessible to individuals with a minimum of 7th grade high school education. ConclusionsOn the basis of the needs and preferences of a diverse consumer representative group, we co-designed EndoSMS, a supportive SMS text message program for individuals with endometriosis. The initial evaluation of the SMS text messages by consumer representatives and health professionals suggested the high acceptability and suitability of the developed SMS text messages. Future studies should further evaluate the acceptability and effectiveness of EndoSMS in a broader population of individuals with endometriosis.

Background and Objectives: Endometriosis causes significant personal and societal burden. Despite this, research funding lags behind other chronic conditions. Determining where to prioritise these limited funds is therefore vital. Research priorities may also differ between individuals with endometriosis and clinicians/researchers. The aim of this research project is to explore research priorities and factors shaping participation in endometriosis research from the perspective of people with endometriosis in Australia. Materials and Methods: Four focus groups involving 30 people with endometriosis were conducted and analysed using qualitative inductive content analysis. Results: Two categories were developed from the data: unmet research needs and motivators and barriers to participation in endometriosis research. Participants expressed interest in developing non-invasive diagnostic tools and a more multidisciplinary or holistic approach to treatment. Participants urgently desired research on treatment options for symptom management, with many prioritising non-hormonal treatments, including medicinal cannabis and complementary medicine. Others prioritised research on the causes of endometriosis over research on treatments to assist with prevention and eventual cure of the disease. The main drivers for participating in endometriosis research were hope for symptom improvement and a reduction in time to diagnosis. Research design features that were important in supporting participation included ease of access to testing centres (e.g., for blood tests) and sharing test results and automated data collection reminders, with simple stra-tegies to record data measurements. Research incentives for younger people with endometriosis and a broad dissemination of information about research projects was considered likely to increase participant numbers. Barriers included time commitments, a lack of flexibility around research appointments for data collection, travel or work commitments, concerns about the safety of some products, and trying to conceive a child. Conclusions: People with endometriosis were open to participating in research they felt aligned with their needs, with a significant focus on diagnostic tools and symptom relief. However, researchers must co-design approaches to ensure convenience and flexibility for research participation.

Abstract Background Cancer related infertility can have an impact on couple relationships, with evidence that couple communication facilitates coping. However, little is known about the ways in which couples communicate about cancer-related fertility concerns. The aim of this article is to examine couple communication about fertility concerns in the context of cancer, and the perceived quality of such communication from the perspective of cancer survivors and their partners. Methods Eight-hundred and seventy-eight cancer survivors (693 women, 185 men) and 144 partners (82 women, 62 men), across a range of tumour types and age groups, completed a survey which examined cancer related fertility concerns. Seventy-eight survivors (61 women and 17 men), and 26 partners (13 women and 13 men), participated in semi-structured interviews, in order to examine the subjective experience of fertility concerns in-depth. Thematic analysis was used to analyse the interviews and open ended survey questions. Valid percentages for single items from the relationships subscale of the Fertility Preservation Inventory (FPI) related to qualitative themes, identified frequency of responses. Results The major theme was ‘talking but not always understanding”. 89.6% of cancer survivors and partners (95.1%) reported working well together handling fertility questions (FPI), but agreed that communication could be improved (65.9% survivors; 65% partners). Open and honest couple communication was associated with feelings of support, understanding and relationship growth, including perception of partner comfort (79.2% survivors, 81.6% partners). However, 32% survivors and 31.1% partners concealed fertility concerns to avoid upsetting their partner, or reported that their partner doesn’t understand their fertility concerns (survivors 25.5%, partners 14.6%), with 14.1% of cancer survivors and 19.4% partners reporting fear of relationship breakdown because of fertility issues. Fear of rejection when forming new relationships, and concerns about how to talk to future partners, was reported by non-partnered individuals. Conclusion Health-care professionals should include partners of cancer survivors in fertility discussions. Couple interventions developed in general psycho-oncology should be extended to the domain of fertility, in order to facilitate effective couple communication. Communication in future relationships needs to be addressed for single people and adolescents and young adults (AYAs) who have fertility concerns.