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This study examined lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) cancer patients' sexual well-being post-cancer, and the associations between sexual well-being and social support, physical concerns, distress, quality of life (QOL), and coping. We used a mixed-methods approach, including 430 surveys and 103 interviews, representing a range of tumor types, sexual and gender identities, age groups, and intersex status. The findings indicated that LGBTQI people with cancer experience declines in sexual well-being following cancer, which are associated with reduced QOL, greater physical concerns, and lower social support. The perceived helpfulness of coping mechanisms was associated with greater sexual well-being across genders, with cisgender men reporting the sharpest declines in sexual well-being and highest use of coping mechanisms. Across all groups, searching for information online was the most frequently used coping mechanism, with support groups and counseling the most under-utilized. Qualitative findings facilitated interpretation of these results, providing examples of ways in which cancer impacted sexual well-being and how physical changes influence sexual embodiment or desire to engage in sex. Concerns about reduced sexual desire and activity, associated with changes to breasts, vulva, vagina, penis, erectile dysfunction, incontinence, scarring, and stoma, reflect previous findings in the non-LGBTQI cancer population. Unique to this population are the impact of physical changes on LGBTQI embodiment, including disruption to sexual and gender identities, and feelings of disconnection from queer communities. Addressing LGBTQI sexual well-being within oncology healthcare is a matter of sexual and reproductive justice, for a population whose needs are often overlooked within cancer care.
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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.
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Neoplasms , Humans , Male , Female , Neoplasms/psychology , Neoplasms/prevention & control , Adult , Middle Aged , Disorders of Sex Development , Fear , Qualitative Research , Young Adult , ShameABSTRACT
BACKGROUND: In a therapeutic partnership, physicians rely on patients to describe their health conditions, join in shared decision-making, and engage with supported self-management activities. In shared care, the patient, primary care, and specialist services partner together using agreed processes and outputs for the patient to be placed at the centre of their care. However, few empirical studies have explored physicians' trust in patients and its implications for shared care models. AIM: To explore trust in patients amongst general practitioners (GPs), and the impacts of trust on GPs' willingness to engage in new models of care, such as colorectal cancer shared care. METHODS: GP participants were recruited through professional networks for semi-structured interviews. Transcripts were integrity checked, coded inductively, and themes developed iteratively. RESULTS: Twenty-five interviews were analysed. Some GPs view trust as a responsibility of the physician and have a high propensity for trusting patients. For other GPs, trust in patients is developed over successive consultations based on patient characteristics such as honesty, reliability, and proactivity in self-care. GPs were more willing to engage in colorectal cancer shared care with patients with whom they have a developed, trusting relationship. CONCLUSIONS: Trust plays a significant role in the patient's access to shared care. The implementation of shared care should consider the relational dynamics between the patient and health care providers.
In a therapeutic partnership, physicians rely on patients to describe their health conditions, join in shared decision-making and engage with supported self-management activities. In shared care, the patient, primary care, and specialist services partner together using agreed processes and outputs for the patient to be placed at the centre of their care. Trust is key to this partnership. However, few studies have explored the physicians' trust in patients and its implications for shared care models. This study aims to explore trust in patients amongst general practitioners (GPs), and the impacts of trust on GPs' willingness to engage in new models of care, such as colorectal cancer shared care. After analysing 25 interview transcripts with GPs, we found some GPs view trust as a responsibility of the physicians, while in others, trust in patients developed over successive consultations based on patient characteristics such as honesty, reliability, and proactivity in self-care. GPs were more willing to engage in colorectal cancer shared care with patients whom they have a developed, trusting relationship. Trust plays a significant role in the patient's access to shared care. The rollout of shared care should consider the relational dynamics between the patient and health care providers.
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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.
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Endometriosis , Child , Female , Humans , Australia , Qualitative ResearchABSTRACT
There is a pressing need for greater understanding and focus on cancer survivorship and informal cancer caring of trans people (binary and non-binary), across tumor types, to inform culturally safe trans inclusive cancer information and care. This qualitative study, part of the mixed methods Out with Cancer project, examined experiences of trans embodiment and identity after cancer diagnosis and treatment. We drew on open-ended survey responses from 63 trans cancer survivors and 23 trans cancer carers, as well as interviews and a photo-elicitation activity with a subset of 22 participants (15 cancer survivors, 7 cancer carers). Reflexive thematic analysis identified three themes: Cancer enhances trans embodiment, through experiences of gender euphoria following cancer treatment, and acceleration of decisions about gender affirmation; cancer erases or inhibits gender affirmation; trans embodiment is invisible or pathologized in cancer care. These findings demonstrate that trans embodiment and identity, as well as the process of gender affirmation, may be disrupted by cancer or informal cancer caring. Conversely, cancer and cancer treatment can positively impact the embodied identity and lives of trans people, despite the anxiety and strain of negotiating medical procedures. However, if healthcare professionals operate within a cis-heteronormative framework and do not understand the meaning of embodied change following cancer treatment for trans individuals, these positive benefits may not be realized.
Subject(s)
Neoplasms , Transgender Persons , Transsexualism , Humans , Gender Identity , Neoplasms/therapy , Qualitative Research , Male , FemaleABSTRACT
Australia's National Men's Health Strategy 2020-2030 identifies refugee and migrant men from culturally and lingustically diverse backgrounds as priority groups for sexual and reproductive health (SRH) interventions. The paucity of SRH research focusing on refugee and migrant men is a significant gap to advance men's health and policy. Hence, this review aimed to synthesise the available evidence on refugee and migrant men's SRH needs, understandingsand experiences of accessing services after resettlement in Australia. A systematic search of peer reviewed literature in PubMed, Scopus, and PsyInfo was made. A World Health Organization framework for operationalising sexual health and its relationship with reproductive health was used to map the identified studies. The socio-ecological framework was applied to thematically synthesise data extracted from individual studies and identify factors that influence the SRH of refugee and migrant men. We included 38 papers in the review. The majority of sexual health studies (16) were about sexually transmitted infections (STIs), mainly HIV (12), followed by sexual health education and information (5) and sexual functioning (3). Reproductive health studies focused on contraceptive counselling and provision (3), antenatal, intrapartum and postnatal care (1) and safe abortion care (1). Several factors influenced refugee and migrant men's SRH, including a lack of access to SRH information, language barriers and stigma. We found that SRH literature on refugee and migrant men focuses on STIs, meaning other areas of SRH are poorly understood. We identified key gaps in research on experiences of, and access to, comprehensive SRH care.
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Refugees , Sexual Health , Sexually Transmitted Diseases , Transients and Migrants , Male , Female , Humans , Pregnancy , Reproductive Health , Health Knowledge, Attitudes, Practice , Sexual Behavior , AustraliaABSTRACT
BACKGROUND: Endometriosis, 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. OBJECTIVE: This 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. METHODS: In 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. RESULTS: Consumer 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. CONCLUSIONS: On 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.
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Background: Lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people with cancer and their carers report poorer psychological outcomes than the general non-LGBTQI cancer population. There is growing acknowledgement that these health inequities can be explained by minority stress, which can be buffered by social support. Study Aim: To examine subjective experiences of minority stress and social support for LGBTQI people with cancer and their carers, drawing on qualitative findings from the Out with Cancer study. Method: An online survey including open ended items was completed by 430 LGBTQI cancer patients and 132 partners and other carers, representing a range of tumor types, sexual and gender identities, age and intersex status. A sub-sample of 104 patients and 31 carers completed an interview, with a follow-up photovoice activity and second interview completed by 45 patients and 10 carers. Data was thematically analysed using an intersectional theoretical framework. Results: Historical and present-day experiences of discrimination, violence, family rejection and exclusion created a legacy of distress and fear. This impacted on trust of healthcare professionals and contributed to distress and unmet needs in cancer survivorship and care. Social support, often provided by partners and other chosen family, including intimate partners and other LGBTQI people, buffered the negative impacts of minority stress, helping LGBTQI patients deal with cancer. However, some participants lacked support due to not having a partner, rejection from family of origin and lack of support within LGBTQI communities, increasing vulnerability to poor psychological wellbeing. Despite the chronic, cumulative impacts of minority stress, LGBTQI patients and carers were not passive recipients of discriminatory and exclusion in cancer care, demonstrating agency and resistance through collective action and advocacy. Conclusion: LGBTQI people have unique socio-political histories and present-day psycho-social experiences that contribute to distress during cancer. Social support serves to buffer and ameliorate this distress. There is a need for cancer healthcare professionals and support services to be aware of and responsive to these potential vulnerabilities, including the intersectional differences in experiences of minority stress and social support. There is also a need for recognition and facilitation of social support among LGBTQI people with cancer and their carers.
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Background: Awareness of the specific needs of LGBTQI cancer patients has led to calls for inclusivity, cultural competence, cultural safety and cultural humility in cancer care. Examination of oncology healthcare professionals' (HCP) perspectives is central to identifying barriers and facilitators to inclusive LGBTQI cancer care. Study Aim: This study examined oncology HCPs perspectives in relation to LGBTQI cancer care, and the implications of HCP perspectives and practices for LGBTQI patients and their caregivers. Method: 357 oncology HCPs in nursing (40%), medical (24%), allied health (19%) and leadership (11%) positions took part in a survey; 48 HCPs completed an interview. 430 LGBTQI patients, representing a range of tumor types, sexual and gender identities, age and intersex status, and 132 carers completed a survey, and 104 LGBTQI patients and 31 carers undertook an interview. Data were analysed using thematic discourse analysis. Results: Three HCP subject positions - ways of thinking and behaving in relation to the self and LGBTQI patients - were identified:'Inclusive and reflective' practitioners characterized LGBTQI patients as potentially vulnerable and offered inclusive care, drawing on an affirmative construction of LGBTQI health. This resulted in LGBTQI patients and their carers feeling safe and respected, willing to disclose sexual orientation and gender identity (SOGI) status, and satisfied with cancer care. 'Egalitarian practitioners' drew on discourses of ethical responsibility, positioning themselves as treating all patients the same, not seeing the relevance of SOGI information. This was associated with absence of LGBTQI-specific information, patient and carer anxiety about disclosure of SOGI, feelings of invisibility, and dissatisfaction with healthcare. 'Anti-inclusive' practitioners' expressed open hostility and prejudice towards LGBTQI patients, reflecting a cultural discourse of homophobia and transphobia. This was associated with patient and carer distress, feelings of negative judgement, and exclusion of same-gender partners. Conclusion: Derogatory views and descriptions of LGBTQI patients, and cis-normative practices need to be challenged, to ensure that HCPs offer inclusive and affirmative care. Building HCP's communicative competence to work with LGBTQI patients needs to become an essential part of basic training and ongoing professional development. Visible indicators of LGBTQI inclusivity are essential, alongside targeted resources and information for LGBTQI people.
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Introduction: Transgender (trans) women of color navigate the intersected identity frames of gender, race, social class and sexuality, whilst facing multiple layers of stigma, discrimination and violence during and following gender affirmation. However, little is known about the ways in which trans women of color negotiate gender affirmation, in the context of the risk of social exclusion and violence. Aim: This article discusses the experience and construction of gender transitioning and gender affirmation for trans women of color living in Australia, associated with the risk of social exclusion or violence. Method: In-depth interviews and photovoice were conducted with 31 trans women of color, analyzed through theoretical thematic analysis informed by intersectionality theory. Results: The following themes were identifed: 1) 'Gender affirmation: A bittersweet experience', with three subthemes: 'Self-empowerment is tempered by family rejection', 'Migration facilitates gender affirmation' and 'Gender affirmation and social support'; 2) 'Being a trans woman of color', subthemes: 'Bodily agency and passing', 'Femininity as pleasure and cultural self-expression', and 'Resisting archetypal White hetero-femininity'; 3) 'Hormones, surgical intervention and navigating the health system'. Conclusion: Gender transitioning and gender affirmation involved the intersection of gender, cultural, social class and sexual identities, accomplished through personal agency and with the support of significant others. To ensure that policy and support services meet the needs of trans women of color, it is critical that the voices of such multiply-marginalized women are at the center of leadership, program and policy development.
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OBJECTIVE: There is growing recognition that health care professionals (HCPs) and policy makers are insufficiently equipped to provide culturally competent care to lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) cancer patients and their families. We examined HCP attitudes, knowledge, and practices regarding LGBTQI cancer care using a mixed-methods research design. METHOD: Surveys were completed by 357 oncology HCPs in nursing (40%), medical (24%), allied health (19%), and clinical leadership roles (11%); 48 of the surveyed HCPs were interviewed. RESULTS: Most HCPs reported being comfortable treating LGBTQI patients, but reported low levels of confidence and knowledge and systemic barriers to LGBTQI cancer care. Most wanted more education and training, particularly on trans and gender-diverse people (TGD) and those born with intersex variations. CONCLUSION: Education of HCPs and health system changes are required to overcome barriers to the provision of culturally competent cancer care for LGBTQI patients. PRACTICE IMPLICATIONS: These findings reinforce the need for inclusion of LGBTQI content in HCP education and professional training curricula, and institutional support for LGBTQI-inclusive practice behaviours. This includes administrative and visual cues to signal safety of LGBTQI patients within cancer care, facilitating inclusive environments, and the provision of tailored patient-centred care.
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Sexual and Gender Minorities , Transgender Persons , Attitude , Caregivers , Female , Health Knowledge, Attitudes, Practice , Health Personnel , HumansABSTRACT
OBJECTIVE: Migrant and refugee women experience inequities in sexual and reproductive health (SRH) care, reflected in the low uptake of SRH services. It is essential for healthcare providers and educators to be aware of women's preferences for SRH information and service delivery, to provide culturally responsive care. Identifying migrant and refugee women's preferences for SRH information and service delivery is the objective of this study. DESIGN: This study investigated this issue, in communities of migrant and refugee women living in Australia and Canada. Eighty-four individual interviews and 16 focus groups comprising 85 participants were conducted (total n = 169), with migrant and refugee women aged 18 years and over from Afghanistan, India (Punjab), Iraq, Somalia, South Sudan, Sri-Lanka (Tamil), Sudan and various South American (Latina) backgrounds. Nine individual interviews were also undertaken with community interviewers, who were migrant or refugee women themselves. RESULTS: Thematic analyses identified that migrant and refugee women are enthusiastic to learn about SRH across the lifespan, using a variety of modalities including group education delivered by community leaders; online and written material; and information provided by general practitioners. Participants emphasised the need for empathetic SRH care, which encompassed longer times for consultations, being seen as experts of their own bodies, privacy and healthcare provided by women practitioners. Greater engagement with migrant and refugee men was positioned as an additional solution to addressing SRH concerns of women. CONCLUSION: Insights from this study can help facilitate the co-design and evaluation of acceptable and sustainable programs to address inequities in SRH experienced by migrant and refugee women.
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Refugees , Transients and Migrants , Male , Female , Humans , Adolescent , Adult , India , Qualitative Research , Reproductive Health , Health Knowledge, Attitudes, PracticeABSTRACT
Transgender (trans) women are at higher risk of sexual violence than cisgender women, with trans women of color reported to be at highest risk. This study examined subjective experiences of sexual violence for 31 trans women of color living in Australia, average age 29 (range 18-54), through in-depth interviews. An additional photovoice activity and follow-up interviews were completed by 19 women. Data were analyzed through thematic analysis and feminist intersectionality theory, identifying the following themes. The first theme, "'A sexually tinged violation of boundaries': Defining sexual violence," examined women's definition of sexual violence, including staring and verbal abuse, nonconsensual touching and sexual assault, in both public and private contexts. The second theme, "'Crossing people's boundaries': Sexual harassment in the public domain," examined the frequent sexual harassment women experienced in their daily lives. This included the subtheme, "A hostile gaze: Public staring and 'weird looks'" and "Mockery and transphobic abuse: Verbal abuse is sexual violence." The third theme, "'Crossing bodily boundaries': Experiences of sexual assault," included the subthemes "'Unwanted sexual touch': Groping and forced sex by strangers," "Danger in relationships: Sexual assault and manipulation," "Sexual violence in the context of sex work," and "'We're turned into something we're not': Fetishization and the sexual other." The poor health outcomes experienced by many trans women are closely associated with their exposure to sexual violence and the social inequities and transphobia to which they are subjected. Trans women of color may experience additional prejudice and discrimination due to the intersection of gender, sexuality, race, and social class. Our research suggests that understanding these intersectionalities is integral in understanding the sexual violence experiences of trans women of color.
Subject(s)
Sex Offenses , Sexual Harassment , Transsexualism , Adult , Female , Gender Identity , Humans , Male , Skin PigmentationABSTRACT
Despite experiencing high rates of sexual violence, there is limited research that explores coping and support needs among trans women of color and those from migrant backgrounds. This article examines the impact of sexual violence, as well as responses and support needs in relation to sexual violence, among 31 trans women of color, aged between 18-54 years, living in Australia. Women were recruited using purposive and snowball sampling, local LGBTQI + networks, and social media. Study advertisements invited participation from people 18 years and older, who identified as a "trans woman of color" or "trans woman from a non-English speaking background," to take part in a study about their lives as trans women of color and experiences of sexual violence. In-depth interviews and photovoice took place between September 2018 and September 2019. Findings were analyzed through thematic analysis, drawing on intersectionality theory. Sexual violence was reported to be associated with fear, anxiety, and depression, and, for a minority of women, self-blame. While women reported hypervigilance and avoiding going out in public as measures to anticipate and protect themselves from sexual violence, they also demonstrated agency and resilience. This included putting time and effort into appearing as a cisgender woman, naming violence, seeking support, rejecting self-blame, and engaging in self-care practices to facilitate healing. Trans women highlighted the need for multi-faceted sexual violence prevention activities to encourage education, empowerment and cultural change across the general population and support services, in order to promote respect for gender, sexuality and cultural diversity.
Subject(s)
Sex Offenses , Transients and Migrants , Transsexualism , Adolescent , Adult , Female , Gender Identity , Humans , Middle Aged , Sexual Behavior , Young AdultABSTRACT
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. 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.
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OBJECTIVE: This study evaluated the acceptability and impact of a written oncofertility educational resource (ER), as a self-help intervention (SH), and as an adjunct to a one-hour health-care professional discussion (HP). METHODS: Within a randomized control trial (RCT), 194 adults with cancer (175 womens; 19 mens) were allocated to the SH or HP intervention. 127 completed 6-weeks post-intervention measures, a retention rate of 65.85%. RESULTS: Across interventions, the ER was rated as highly acceptable and useful, in terms of ease of understanding, and information. Heath literacy significantly increased post-intervention, including functional literacy, communicative literacy, and critical health literacy. There were no significant changes in ratings of fertility distress or general distress pre-post intervention. Quality of life was significantly reduced post intervention. Those in the HP condition reported higher quality of life and greater likelihood of communication with others about fertility, most notably with intimate partners, post-intervention. Qualitative identification of increased knowledge, confidence with communication and normalization of fertility concerns, reflects increased health literacy, and provides explanation for significant reductions in feeling nervous and fearful about fertility treatments post-intervention. CONCLUSIONS: Our findings confirm the importance of information provision about the impact of cancer on fertility. Written ERs are a useful adjunct to a patient-clinician discussion, increasing health literacy, which facilitates knowledge, self-efficacy and management of fertility concerns and changes.
Subject(s)
Health Literacy , Neoplasms , Adult , Female , Fertility , Humans , Male , Men , Neoplasms/therapy , Sexual PartnersABSTRACT
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.
Subject(s)
Fertility Preservation , Infertility , Neoplasms , Adolescent , Communication , Female , Humans , Infertility/etiology , Male , Survivors , Young AdultABSTRACT
OBJECTIVE: The purpose of this study was to examine how cancer-related fertility concerns impact on couple relationships from the perspectives of people with cancer (PWC) and partners of people with cancer. METHODS: A qualitative research design was used, drawing data from open-ended responses to a survey and in-depth individual interviews. Eight hundred and seventy-eight PWC (693 women, 185 men) and 144 partners (82 women, 62 men), across a range of tumour types and age groups, completed a survey, and 78 PWC (61 women and 17 men) and 26 partners (13 women and 13 men), participated in semi-structured interviews. RESULTS: Thematic analysis identified that many PWC and partners experience a 'double burden', manifested by cancer-related fertility concerns creating relational stress, changes to couple sexual intimacy and feelings of inadequacy when forming new relationships. However, many participants adopted strategies to facilitate coping with infertility or fertility concerns. This included acceptance of infertility and privileging of survival, focusing on relationship growth, optimism and nurturing in other ways. CONCLUSION: Cancer-related fertility concerns can have a significant impact on couple relationships. Psychological support from clinicians may facilitate couple coping, as well as help to address concerns about future relationships for un-partnered people with cancer.
Subject(s)
Infertility , Neoplasms , Female , Fertility , Humans , Male , Sexual Behavior , Sexual PartnersABSTRACT
This paper discusses the way that trans women embody their transgender identity, focusing on identity questioning, gender dysphoria, clinical gatekeeping and medicalized narratives. Situated within the hermeneutics methodological approach, we adopted the unobtrusive research as our research method, where data was derived from online forums where trans women posted content about their perspectives and experiences of gender and gender transitioning. Thematic analysis method was used for data analysis. Our findings suggest that gender identity is embodied and socially negotiated. Many trans women were initially ambivalent about their transgender identity and some continued to question their desired identity throughout adulthood. When presenting to healthcare professionals many trans women reported being expected to adopt a 'wrong body' narrative in order to gain access to treatment and surgery for gender transitioning and affirmation. In doing so, trans women interact with significant others and health care providers, and face many challenges. These challenges must be understood so that trans women can perform self-determination practices as a way to achieve gender autonomy.
Subject(s)
Gender Dysphoria , Gender Identity , Transgender Persons , Adult , Female , Humans , Male , Sexual BehaviorABSTRACT
In this study, adult migrant and refugee women's negotiation of sexual agency in the context of marriage is explored. In Sydney, Australia and Vancouver, Canada, 78 semistructured individual interviews, and 15 focus groups, comprised of 82 participants, were conducted with women who had recently migrated from Afghanistan, Iraq, Somalia, South Sudan, Sudan, Sri Lanka, and South America. Women's negotiation of sexual agency was evident with respect to husband choice, disclosure of sexual desire, pleasure, pain, and sexual consent. While some participants took up subjugated sexual subject positions reflecting dominant cultural or religious discourses, many women also resisted these discourses to enact sexual agency.