"I've had constant fears that I'll get cancer": the construction and experience of medical intervention on intersex bodies to reduce cancer risk.

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.

"We're trained to trust our patients": a qualitative study on the general practitioners' trust in patients for colorectal cancer shared care.

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.

Reinforcing or Disrupting Gender Affirmation: The Impact of Cancer on Transgender Embodiment and Identity.

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.

"Surviving Discrimination by Pulling Together": LGBTQI Cancer Patient and Carer Experiences of Minority Stress and Social Support.

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.

LGBTQI Inclusive Cancer Care: A Discourse Analytic Study of Health Care Professional, Patient and Carer Perspectives.

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.

Attitudes, knowledge and practice behaviours of oncology health care professionals towards lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) patients and their carers: A mixed-methods study.

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.

A randomized controlled evaluation of an educational resource to address fertility concerns after cancer.

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.

Talking but not always understanding: couple communication about infertility concerns after cancer.

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.

The impact of cancer-related fertility concerns on current and future couple relationships: People with cancer and partner perspectives.

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.

Embodying Transgender: An Analysis of Trans Women in Online Forums.

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.