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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.

Background: LGBTQI (lesbian, gay, bisexual, transgender, queer and/or intersex) communities are increasingly recognized as a vulnerable and high-risk population in oncology. LGBTQI cancer carers, including carers who are LGBTQI and other carers of LGBTQI people, experience many of the same stressors as LGBTQI patients but their support needs are often overlooked in the cancer literature., Method: This mixed-methods study examined distress and quality of life in LGBTQI cancer carers. Online surveys were completed by 129 carers and 31 carers took part in a one-to-one semi-structured interview. Analyses of variance (ANOVAs) tested for differences in psychosocial outcomes and carer experiences by gender, sexuality, age, carer relationship and carer/patient LGBTQI status. Reflexive thematic analysis of interviews and open-ended survey responses facilitated in-depth examination of subjective experiences., Results: 42.6% of participants reported high or very high distress. Distress was significantly positively correlated with discrimination in cancer care, health impact, financial impact and lack of family support; it was negatively correlated with comfort in LGBTQI sexuality and gender identity, social support and quality of life. Four themes were identified in thematic analysis of qualitative data: (1) Identity on the sidelines: LGBTQI sexuality and gender pushed aside during cancer caregiving; (2) Fear of being shut-out: rejection and exclusion of LGBTQI cancer carers; (3) Lack of support for LGBTQI caregivers; and (4) Closer and stronger relationships due to a culture of mutual caregiving., Conclusions: LGBTQI cancer carers must contend with typical caregiving demands whilst also managing additional minority stressors, including discrimination, rejection from family, isolation from LGBTQI communities, and invisibility in healthcare and support services. Despite this, LGBTQI carers showed resilience in building their own mutually supportive networks to rally around the person with cancer, which were reported to ameliorate psychosocial vulnerabilities. Service providers need to recognize the needs of LGBTQI cancer carers through inclusive and reflective practices. This will facilitate trust and patient and carer sexuality and gender identity disclosure, with positive consequences for wellbeing and satisfaction with cancer care., (© 2023. The Author(s).)

Background: Lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) adolescents and young adults (AYAs) with cancer report higher levels of depression and anxiety and lower health related quality of life than non-LGBTQI AYAs with cancer, and LGBTQI adults with cancer. This mixed methods study examined LGBTQI AYAs' experiences of cancer and cancer care, to understand these health disparities., Methods: Online surveys were completed by 95 LGBTQI AYAs with cancer (age 16-39 years); 19 AYAs took part in a one-to-one semi structured interview. Reflexive thematic analysis of interviews and open-ended survey responses facilitated in-depth examination of subjective experiences; descriptive statistics performed on individual closed-ended survey items identified the percentage of AYAs reporting experiences identified in the qualitative analysis., Results: 63% of AYAs reported high or very high distress on the K10. Three themes were identified in the qualitative analysis: 1) "Identities in flux", included subthemes "Cancer disrupts developing identities, and involvement with LGBTQI communities"; "Internalized prejudice impacts identities"; and "Cancer facilitates identities and embodiment". 2) "Invisibility in cancer care", included subthemes "Navigating disclosure amongst cis-heteronormative assumptions", "Discrimination and paternalistic cancer care" and " Cis-heteronormativity within cancer information". 3) "Precarious social support for LGBTQI AYAs with cancer", included subthemes " Social support during cancer is helpful for LGBTQI AYAs", "LGBTQI AYAs navigate limited support", and" Finding cancer peer support networks is difficult for LGBTQI AYAs"., Conclusions: LGBTQI AYAs with cancer experience psychosocial vulnerabilities related to identity development, experiences of care, and social support networks. These factors likely contribute to their previously evidenced elevated risk of distress, relative to both non-LGBTQI AYAs and LGBTQI older adults. AYAs affected by cancer may require additional, tailored supportive care, including targeted information resources, LGBTQI AYA specific cancer support groups, or partnerships and referrals to LGBTQI community organisations. Additionally, it is evident that health care professionals and cancer services have much work to do in ensuring LGBTQI AYAs receive affirming and appropriate care across paediatric and adult clinical settings. They must move beyond assuming all patients are cisgender, heterosexual and do not have intersex variations unless otherwise stated; work to signal inclusivity and facilitate disclosure; and be able to respond appropriately with tailored information and care, which is inclusive of LGBTQI partners, chosen family, and support systems., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Objective: This review assessed the inclusion of lesbian, gay, bisexual, trans, queer and/or intersex (LGBTQI) people in online cancer information., Methods: The websites of Australian cancer organizations were reviewed to identify if they included LGBTQI people and the extent and nature of this inclusion. Websites that did not include LGBTQI people were then reviewed to identify if information was implicitly LGBTQI inclusive. International LGBTQI cancer information resources were reviewed to identify key content., Results: Of sixty-one Australian cancer organization websites reviewed, eight (13%) mentioned LGBTQI people, including 13 information resources targeted to LGBTQI people and 19 general cancer information resources that mentioned LGBTQI people. For Australian cancer websites that did not mention LGBTQI people, 88% used gender neutral language to refer to partners, 69% included a range of sexual behaviours, 13% used gender neutral language when referring to hormones or reproductive anatomy but none acknowledged diverse relationship types. Internationally, 38 LGBTQI-specific cancer information resources were identified., Conclusions: Cancer patient information resources need to be LGBTQI inclusive. LGBTQI-targeted resources are required to address this population's unique needs and improve cultural safety and cancer outcomes., Practice Implications: Recommendations are provided for LGBTQI inclusive cancer patient information resources., Competing Interests: Declaration of Competing Interest The authors have no conflict of interest to declare., (Copyright © 2023 The Authors. Published by Elsevier B.V. All rights reserved.)

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., (© 2023. The Author(s).)

Purpose: Fertility is a major concern for adolescents and young adults (AYAs, 15-30 years) diagnosed with cancer, yet they often report a lack of information and understanding about fertility impacts and preservation options. This study aimed to evaluate the acceptability and preliminary efficacy of Maybe Later Baby (MLB), an oncofertility information resource for AYAs diagnosed with cancer. Methods: In a randomized controlled trial, 13 participants received MLB alone and 10 received an augmented intervention involving an additional consultation with a health care professional (HCP). Pre- and postintervention surveys and interviews explored participants' well-being, fertility knowledge, health literacy, and experiences using the resource. Results: Participants indicated that the resource was accessible and understandable and provided valuable information without increasing distress. When averaged across conditions, functional health literacy ( p  = 0.006) and oncofertility knowledge ( p  = 0.002) increased, although there were no significant changes in fertility-related emotions ( p  > 0.05), and quality of life decreased ( p  = 0.014). While qualitative accounts suggested that HCP consultations were useful and validated participants' experiences and concerns, participants receiving the augmented intervention became more nervous/fearful about fertility treatment ( p  = 0.005). There were no other differences in outcomes between conditions. Conclusions: Young people diagnosed with cancer want and value information about oncofertility and resources such as MLB are acceptable and useful means of providing this information. This could be supplemented by clinical discussion to ensure that tailored situation-specific information is provided and understood and patient distress is appropriately managed. Clinical Trial Registration number: 12615000624583.

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., (© 2021 John Wiley & Sons Ltd.)

Background: Adolescents and young adults (AYAs) given a diagnosis of cancer who experience infertility concerns often report having poorer quality of life (QoL). However, the role of infertility-related stressors and illness acceptance on QoL is not clear., Objective: The aim of this study was to describe the impact of psychosocial factors surrounding cancer treatment and infertility on QoL. We hypothesized that need for parenthood and infertility-related social concerns would be directly related to QoL and indirectly related to QoL through acceptance of illness., Methods: Cancer patients/survivors (n = 178; 75.3% female) aged 15 to 29 years completed measures of QoL, acceptance of illness, infertility-related social concerns, and need for parenthood. Path analysis was used to test the hypothesized and subsequent models to determine the best fit for predictors of QoL., Results: The final model explained 28.36% of the variance in QoL. Lower infertility-related social concerns were directly and indirectly related to higher QoL scores. Need for parenthood did not directly relate to QoL, instead relating directly to increased infertility-related social concerns. Higher acceptance of illness (β = .39) and older age (β = .19) were directly related to higher QoL scores. Female patients had higher need for parenthood (β = .17)., Conclusions: These findings suggest that social concerns and expectations surrounding infertility have a negative impact on AYA cancer survivors' and patients' QoL, which increases as AYAs approach socially normative parenting age., Implications for Practice: Providing survivors with specialist support to manage their infertility-related social concerns and improve their acceptance of illness has the potential to improve their QoL., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.)

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.

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., (© 2020 John Wiley & Sons Ltd.)

Objective: Infertility is a significant concern for people with cancer and fertility preservation is often recommended. However, uptake of preservation interventions remains low. In this study, we examined how people with cancer construct their subjectivity - their sense of self - in relation to decision making and processes of fertility preservation., Design: Six-hundred and ninety-three women and 185 men completed a self-report survey; 61 women and 17 men participated in semi-structured interviews. Subject positions adopted in relation to constructions of fertility preservation in transcripts and open-ended survey responses were examined using thematic decomposition., Results: Three main discursive themes were identified: 'Limited agency and choice, or resisting risk: not taking part in fertility preservation', 'Fertility preservation as a means to retain hope and control', and 'Fertility preservation as uncertain and distressing'., Conclusion: It is important for health professionals to provide accurate information, acknowledge the complexity of fertility preservation and implications for 'liminal' survivorship where exclusion, uncertainty or unsuccessful interventions have occurred.

Objective: Infertility-related distress is recognised to be a long-term effect of cancer. There have been attempts to examine predictors of such distress, but there is inconsistency in the findings. This study examined the psychological impact of infertility-related distress in women and men cancer survivors, across age group, parity, cancer type, time since diagnosis, and relationship context; and the association of distress with acceptance of illness and relationship satisfaction., Methods: 693 women and 185 men completed a self-report survey examining infertility-related distress (fertility problem inventory [FPI], acceptance of cancer (acceptance of illness scale [AIS]), psychological distress (Kessler psychological distress scale [K10]), quality of life (QoL) (ladder of life), and relationship satisfaction relationship assessment scale [RAS]); 61 women and 17 men took part in one-to-one interviews to examine subjective experiences of infertility distress., Results: Infertility distress was positively correlated with psychological distress and negatively correlated with QoL, relationship satisfaction, and acceptance of cancer across gender, cancer type and stage, relationship status, and age. Women reported significantly higher infertility distress than men. In multiple regression analysis, unique statistical predictors of infertility distress for women were childlessness, cancer acceptance, and QoL. Childlessness and relationship satisfaction were unique predictors for men. Thematic analysis of interviews identified loss and grief, identity threat, relationship concerns or support, and acceptance of cancer and infertility as key themes., Conclusions: Concern about cancer-related infertility is associated with decrements in psychological well-being and QoL, particularly for those without children. Psychological support to address cancer-related infertility distress should acknowledge the different meanings of infertility across gender, and the impact of acceptance of cancer and relationship satisfaction., (© 2019 John Wiley & Sons, Ltd.)

Objective: Cancer patients experience reproductive concerns from diagnosis through to survivorship. However, research has yet to investigate the degree of fertility-related psychological distress at different treatment time points: diagnosis, treatment, and survivorship. Currently, cancer patients are offered fertility counselling at the time of diagnosis, to assist fertility preservation decision making. A systematic review of the short-term and long-term psychological impact of infertility in cancer patients would inform on an improved, longitudinal model of psychological care., Methods: A systematic review of the literature was conducted in January 2018 utilising electronic databases Medline, EMBASE, PSYCH Info, Web of Science, and SCOPUS. An initial search identified 708 potentially relevant studies. Literature was assessed that reported on fertility-related psychological distress experienced by male and female cancer patients of reproductive age (<45 years) across oncology treatment time points., Results: A total of 47 papers were included within the final review. Fertility-related psychological distress persists from diagnosis through to survivorship, with cancer patients reporting a range of negative emotional experiences brought about by threatened infertility. In survivorship, reproductive concerns, unfulfilled desire for a child, nulliparous status, and early menopause were linked to higher rates of mental health disorders and psychological distress., Conclusions: Fertility-related psychological distress is prevalent and persistent in cancer patients and survivors. As such, patients and survivors would greatly benefit from fertility-related psychological support implemented into standard practice from diagnosis through to survivorship. A revised model of care is proposed., (© 2018 John Wiley & Sons, Ltd.)

Background: Infertility is a major concern for people with cancer and their partners. There have been calls for further research on the gendered nature of psychosocial, emotional and identity concomitants of fertility post-cancer across women and men., Method: The gendered construction and experience of infertility following cancer was examined through a survey of 693 women and 185 men, and in-depth one-to-one interviews with a subsample of survey respondents, 61 women and 17 men, purposively selected across cancer types and age groups. Thematic decomposition was used to examine the open ended survey responses and interviews. The chi square test for independence was used to test for group differences between women and men on closed survey items., Results: In the thematic decomposition, infertility was identified as providing a 'Threat of Biographical Disruption' which impacted on life course and identity, for both women and men. Subthemes identified were: 'Parenthood as central to adulthood'; 'Infertility as a threat to gender identity'; ' Unknown fertility status and delayed parenthood'; 'Feelings of loss and grief'; 'Absence of understanding and support'; 'Benefit finding and renegotiation of identity'. In the closed survey items, the majority of women and men agreed that they had always 'wanted to be a parent' and that 'parenthood was a more important life goal than a satisfying career'. 'It is hard to feel like a true adult until you have a child' and impact upon 'my feelings about myself as a man or a woman' was reported by both women and men, with significantly more women reporting 'I feel empty because of fertility issues'. Many participants agreed they 'could visualise a happy life without a child' and there is 'freedom without children'. Significantly more men than women reported that they had not discussed fertility with a health care professional., Conclusion: The fear of infertility following cancer, or knowledge of compromised fertility, can have negative effects on identity and psychological wellbeing for both women and men, serving to create biographical disruption. Support from family, partners and health care professionals can facilitate renegotiation of identity and coping.

Objective: The emerging discipline of oncofertility advocates for the timely provision of fertility information and referral for fertility preservation to all cancer patients of reproductive age (<45 years). A systematic review was undertaken on the clinician provision of oncofertility support to determine whether cancer patients are having their support needs adequately met by staff., Methods: An initial search conducted in May 2016 identified 351 potentially relevant studies. The papers were divided into 2 categories: Papers on the clinician provision of oncofertility support were reviewed for this study, and papers on patient oncofertility support needs were reviewed for a separate systematic review., Results: A total of 23 studies were included within the final review of this manuscript. Although many clinicians are broadly informed about the risk to their patients' fertility brought about by cancer treatment, there are many factors which hinder the appropriate discussion, referral, or service utilisation needed to provide adequate oncofertility support to patients of reproductive age., Conclusions: Oncofertility support is often not delivered to the standard of current guidelines, with many clinicians not providing the recommended care to all eligible patients, and as such many patients may lack the oncofertility support that they require. The implementation of a clear procedural process would assist clinicians in the provision of oncofertility support for cancer patients of reproductive age., (Copyright © 2017 John Wiley & Sons, Ltd.)

Objective: Decline in fertility potential brought about by a cancer diagnosis or cancer treatment is one of the biggest impacts to cancer patients' long-term quality of life. As such, the current manuscript aimed to systematically review the literature on oncofertility support needs for cancer patients of a reproductive age (14-45 years of age)., Methods: A systematic review of the literature was conducted in May 2016 through the searching of electronic databases Medline, EMBASE, PSYCH Info, Web of Science and SCOPUS, alongside the screening of relevant reference lists. An initial search identified 351 potentially relevant studies. The papers were divided into 2 categories; papers on patient oncofertility support needs were reviewed for this systematic review, and papers on clinician provision of oncofertility support were reviewed for a separate systematic review., Results: A total of 30 studies were included within the final review. Support needs were categorised as information, service, clinician-patient interactions, psychological, and family. A number of studies indicated that cancer patients place great important on their oncofertility care and have unmet support needs. Patients were satisfied and felt supported when additional care was taken to ensure fertility information and service needs were met., Conclusions: Patients desire for clinicians to support their concerns through the provision of adequate information, access to oncofertility services, taking time to discuss oncofertility treatment and concerns, specialised psychological support, and responsiveness to individual needs., (Copyright © 2017 John Wiley & Sons, Ltd.)

Background: Individuals affected by cancer report a need for information about fertility from health care professionals (HCPs), in order to inform decision making and alleviate anxiety. However, there is evidence that many health professionals do not engage in such discussions., Method: A mixed method design was used to examine the construction and subjective experience of communication with health professionals about fertility in the context of cancer, from the perspective of patients. A survey was completed by 693 women and 185 men, across a range of cancer tumour types and age groups, and in-depth one-to-one interviews conducted with a purposively selected subsample of survey respondents, 61 women and 17 men. The chi square test for independence was used to test for group differences between women and men on closed survey items. Thematic analysis was used to examine the open ended survey responses and interviews., Results: Significantly more women (57%, n = 373) than men (46%, n = 80) (X 2 (2517)  = 6.54, p = .011) reported that they had discussed fertility with a HCP since diagnosis of cancer. Satisfaction with the discussion was reported by 65% (n = 242) of women and 69% (n = 54) (ns) of men. This discussion was reported to have been initiated by the patient or their partner in 44% (n = 165) of women and 47% (n = 37) (ns) of men. In the interviews and open ended surveys three themes were identified: Feeling heard and informed about fertility after cancer: Positive experiences of HCP communication; "I was never given full disclosure": HCP silence or reticence about discussing fertility after cancer, including the sub-theme "Their primary concern is getting me cancer free": Constructions of absence of fertility communication by HCPs; and Confusion and lack of compassion: Unsatisfactory information provision about fertility and cancer., Conclusion: Discussion with a HCP about fertility concerns, and satisfaction with the discussion, was associated with reports of lower patient distress, greater knowledge and understanding of the consequences of cancer on fertility, involvement in the decision making process about fertility preservation, and satisfaction with health care.

Objective: Many women experience premature menopause following cancer treatment, accompanied by psychological distress, and poor health-related quality of life. In this qualitative study, we examined how women construct their gendered subjectivities - their sense of self as a woman - in the context of premature menopause after cancer., Design: We analysed data from open-ended survey items and semi-structured interviews with women who had experienced cancer. Six hundred and ninety-five women completed the online survey and 61 took part in a semi-structured interview. A thematic decomposition was conducted to identify the subject positions associated with menopause taken up by the women., Results: Three overall themes were identified: 'The Incomplete Woman,' 'The Abject, Asexual Woman' and 'Out of Time and Social Isolation.' Menopause was predominantly constructed as a negative experience, similar to older post-menopausal women and dissimilar to peers, contributing to experiences of social isolation. Menopause also signified the presence of a medically diagnosed cancer condition, and uncertainty around cancer prognosis., Conclusion: It is important for cancer support group leaders and other service providers to be sensitive to women's negotiation of menopause following cancer, in the context of broader cultural constructions, in order to provide appropriate information and support.

Changes to sexuality can be one of the most difficult aspects of life following cancer. This study examines the experience of discussing sexuality post cancer with health care professionals (HCPs), from the perspective of women and men with cancer (PWC), and their partners (PPWC), across a range of cancer types. A total of 657 PWC (535 women, 122 men) and 148 PPWC (87 women, 61 men) completed a survey containing closed and open-ended items, analysed by analysis of variance and thematic analysis. Discussions about sexuality with a HCP were more likely to be reported by men (68%) compared to women PWC (43%), and by women (47%) compared to men PPWC (28%), as well as by those with a sexual or reproductive cancer. Men PWC and women PPWC were most likely to want to discuss sexuality with a HCP, with men PWC and PPWC reporting highest levels of satisfaction with such discussions. Open-ended responses revealed dissatisfaction with the unwillingness of HCPs to discuss sexuality, unhappiness with the nature of such discussion, and positive accounts of discussions about sexuality with HCPs. These findings lend support to the notion that people with cancer and their partners may have unmet sexual information and support needs., (© 2014 John Wiley & Sons Ltd.)

Health care professionals (HCPs) play a key role in providing information and counselling about the implications of cancer for fertility, however, many patients do not receive such information. The aim of this study was to examine the perspectives and practices of Australian HCPs in relation to discussing fertility with cancer patients. A mixed-methods design, comprising of an online survey of 263 HCPs [41.4% nurses; 25.5% doctors; 31% allied health care professionals (AHP)] and qualitative interviews with 49 HCPs, was utilised. HCPs reported that fertility is an important concern for patients and their partners; however, only 50% of doctors and nurses, and 24% of AHPs reported that they always addressed this issue. The primary barriers to discussing fertility were poor patient prognosis; patient gender or age; time constraints; and absence of appropriate resources and materials. Only a minority of HCPs (29%) had undergone training in discussing fertility with cancer patients. The majority wanted further training or education: including nurses (81.8%), AHPs (80.6%) and doctors (55.4%). HCPs agreed that a number of resources would assist them to raise fertility with their patients, including a list of appropriate referral sources, fact sheets, information booklets, a fertility consultation checklist and on-line resources., (© 2015 John Wiley & Sons Ltd.)

Background: Information and discussion of sexual changes with a health professional is a high priority for many cancer patients in order to assist with sexual changes and ensure that sexual intimacy does not cease post-cancer. The PLISSIT model is widely recommended as a framework for providing sexual information and support, allowing for the discussion of sexual changes at various levels of increasing intensity. The aim of the present study is to evaluate the early stages of the PLISSIT model by examining the relative efficacy of written information provision about cancer related sexual changes, and information provision accompanied by a single session of counselling, for people with cancer and their partners, across a range of cancer types., Method: Eighty-eight people with cancer and 53 partners across a range of sexual and non-sexual cancers, took part in a randomised trial which adopted mixed method analysis to examine changes in psychological wellbeing, quality of life, relationship satisfaction and communication, and sexual functioning, following written information provision about cancer related sexual changes (self-help condition; SH), or written information accompanied by a single session of counselling (health professional condition; HP)., Results: Ratings of the usefulness and efficacy of the SH and HP interventions, collected through analysis of Likert scales, open ended survey items and interviews, indicated that both conditions were found to be useful and efficacious by the majority of participants, serving to increase awareness of sexuality, improve couple communication about sex, and help in the management of sexual changes, through the exploration of non-coital sexual practices. In contrast, the quantitative analysis of standardized instruments found no significant improvements in psychological wellbeing, quality of life, relationship satisfaction and communication, or sexual functioning. There were significant reductions in self-silencing in the HP condition, and a trend towards increases in sexual satisfaction across both conditions., Conclusion: These results offer support for the early stages of the PLISSIT model, in terms of normalization and increased awareness of sexual changes after cancer, increased couple communication about sexual changes, and legitimation of exploration of a range of non-coital sexual practices and intimacy. However, more complex and intensive interventions are needed to address sexual functioning and psychological wellbeing. The findings provide support for the proposition that providing permission to discuss sexuality should be the core feature underpinning all stages of interventions designed to provide sexuality information and support for people with cancer and their partners, and also demonstrate the potential importance of limited information and specific suggestions., Trial Registration: This study was registered in the Australian New Zealand Clinical Trials Registry. ( ACTRN12615000399594 ) on 29 April 2015.

Background: Previous research on cancer and sexuality has focused on physical aspects of sexual dysfunction, neglecting the subjective meaning and consequences of sexual changes. This has led to calls for research on cancer and sexuality to adopt an "integrative" approach, and to examine the ways in which individuals interpret sexual changes, and the subjective consequences of sexual changes., Method: This study examined the nature and subjective experience and consequences of changes to sexual well-being after cancer, using a combination of quantitative and qualitative analysis. Six hundred and fifty seven people with cancer (535 women, 122 men), across a range of reproductive and non-reproductive cancer types completed a survey and 44 (23 women, 21 men) took part in an in-depth interview., Results: Sexual frequency, sexual satisfaction and engagement in a range of penetrative and non-penetrative sexual activities were reported to have reduced after cancer, for both women and men, across reproductive and non-reproductive cancer types. Perceived causes of such changes were physical consequences of cancer treatment, psychological factors, body image concerns and relationship factors. Sex specific difficulties (vaginal dryness and erectile dysfunction) were the most commonly reported explanation for both women and men, followed by tiredness and feeling unattractive for women, and surgery and getting older for men. Psychological and relationship factors were also identified as consequence of changes to sexuality. This included disappointment at loss of sexual intimacy, frustration and anger, sadness, feelings of inadequacy and changes to sense of masculinity of femininity, as well as increased confidence and self-comfort; and relationship strain, relationship ending and difficulties forming a new relationship. Conversely, a number of participants reported increased confidence, re-prioritisation of sex, sexual re-negotiation, as well as a strengthened relationship, after cancer., Conclusion: The findings of this study confirm the importance of health professionals and support workers acknowledging sexual changes when providing health information and developing supportive interventions, across the whole spectrum of cancer care. Psychological interventions aimed at reducing distress and improving quality of life after cancer should include a component on sexual well-being, and sexual interventions should incorporate components on psychological and relational functioning.

Background: Changes to sexual wellbeing are acknowledged to be a long-term negative consequence of cancer and cancer treatment. These changes can have a negative effect on psychological well-being, quality of life and couple relationships. Whilst previous conclusions are based on univariate analysis, multivariate research can facilitate examination of the complex interaction between sexual function and psycho-social variables such as psychological wellbeing, quality of life, and relationship satisfaction and communication in the context of cancer, the aim of the present study., Method: Six hundred and fifty seven people with cancer (535 women, 122 men) and 148 partners (87 women, 61 men), across a range of sexual and non-sexual cancers, completed a survey consisting of standardized measures of sexual functioning, depression and anxiety, quality of life, relationship satisfaction, dyadic sexual communication, and self-silencing, as well as ratings of the importance of sex to life and relationships., Results: Men and women participants, reported reductions in sexual functioning after cancer across cancer type, for both people with cancer and partners. Multiple regression analysis examined psycho-social predictors of sexual functioning. Physical quality of life was a predictor for men and women with cancer, and for male partners. Dyadic sexual communication was a predictor for women with cancer, and for men and women partners. Mental quality of life and depression were also predictors for women with cancer, and the lower self-sacrifice subscale of self-silencing a predictor for men with cancer., Conclusion: These results suggest that information and supportive interventions developed to alleviate sexual difficulties and facilitate sexual renegotiation should be offered to men and women with both sexual and non-sexual cancers, rather than primarily focused on individuals with sexual and reproductive cancers, as is the case currently. It is also important to include partners in supportive interventions. Interventions aimed at improving sexual functioning should include elements aimed at improving physical quality of life and sexual communication, with a focus on psychological wellbeing also being important for women with cancer.

Younger women diagnosed with cancer often face compromised fertility as a result of their treatment. However, previous research has adopted a biomedical model of fertility and utilised hypothetico-deductive research methods which have not allowed for full exploration of women's subjectivity. This study explored younger women's construction of their fertility post-cancer, and their discussions of fertility with healthcare professionals, from a social constructionist epistemology. Semi-structured one-to-one interviews were conducted with eight women aged 18-26, across a variety of cancer types. Foucaultian Discourse Analysis identified three subject positions associated with fertility concerns: 'Inadequate woman: Accepting the motherhood mandate'; 'Adequate woman: Resisting the motherhood mandate'; and 'Survival of the fittest: Woman as genetically defective'. Implications of these subject positions included feelings of inadequacy, fear and devastation; feeling undesirable to romantic partners; and concern about passing on cancer-positive genes. In describing healthcare professional interactions, women adopted positions of 'Satisfied patient'; 'Passive recipient patient'; or 'Resisting the passive patient position'. Accounts of inadequate information provision were associated with anger and frustration, whereas feeling adequately informed was associated with satisfaction at making decisions about fertility preservation. These results suggest that fertility is of importance to young women cancer survivors, and that compromised fertility can negatively impact subjectivity.

Background: Previous research on sex and intimacy in the context of cancer has focused on documenting sexual changes and difficulties, primarily focusing on heterosexual individuals who have sexual or reproductive cancers. Analyses of sexual renegotiation and the social construction of sex are largely absent from the research agenda., Objective: The objective of this study was to explore renegotiation of sex in individuals with cancer, and in partners, across a broad range of cancer types and relational contexts., Methods: Semistructured interviews were conducted with 44 people with cancer (23 women, 21 men) and 35 partners (18 women, 17 men), 86% of whom identified as heterosexual. The data were analyzed with theoretical thematic analysis, from a material-discursive-intrapsychic perspective., Results: Renegotiation of sex or intimacy was reported by 70% of participants, reflected in 3 themes: "resisting the coital imperative: redefining 'sex,'" "resisting the coital imperative: embracing intimacy," and "adopting the coital imperative: refiguring the body through techno-medicine." The importance of relational context was reflected in the theme "the inter-subjective nature of sexual re-negotiation: relationship context and communication.", Conclusions: Whereas previous research has focused on embodied changes associated with sexuality after cancer, or their psychological consequences, the findings of the present study suggest that hegemonic constructions of "sex," in particular the coital imperative, are central to the experience and negotiation of sex and intimacy after cancer., Implications for Practice: Resistance of the coital imperative should be a fundamental aspect of information and support provided by health professionals who seek to reduce distress associated with sexual changes after cancer.

Women cancer carers have consistently been found to report higher levels of distress than men carers. However, there is little understanding of the mechanisms underlying these gender differences in distress, and a neglect of rewarding aspects of care. We conducted in-depth semistructured interviews with 53 informal cancer carers, 34 women and 19 men, to examine difficult and rewarding aspects of cancer care. Thematic analysis was used to analyze the transcripts. Women were more likely to report negative changes in the relationship with the person with cancer; neglect of self, social isolation, and physical health consequences; anxiety; personal strength and growth; and to position caring as a privilege. Men were more likely to report increased relational closeness with the person with cancer, and the burden of additional responsibilities within the home as a difficult aspect of caring. We interpret these findings in relation to a social constructionist analysis of gender roles.

Background: The increasing number of individuals living with cancer has led to a focus on the quality of life of survivors, and their families. Sexual wellbeing is a central component of quality of life, with a growing body of research demonstrating the association between cancer and changes to sexuality and intimacy. However, little is known about patient and professional understanding of cancer and sexuality post-cancer. This study was designed to explore the complex perspectives that people with personal and professional experience with cancer hold about sexuality in the context of cancer., Methods: An interview study using Q methodology was conducted with 44 people with cancer, 35 partners of a person with cancer and 37 health professionals working in oncology. Participants were asked to rank-order 56 statements about sexuality and intimacy after cancer and asked to comment on their rankings in a subsequent semi-structured interview. A by-person factor analysis was performed with factors extracted according to the centroid method with a varimax rotation., Results: A three-factor solution provided the best conceptual fit for the perspectives regarding intimacy and sexuality post-cancer. Factor 1, entitled "communication - dispelling myths about sex and intimacy" positions communication as central to the acceptance of a range of satisfying sexual and intimate practices post-cancer. Factor 2, "valuing sexuality across the cancer journey," centres on the theme of normalizing the experience of sex after cancer through the renegotiation of sex and intimacy: the development of alternative sexual practices. Factor 3, "intimacy beyond sex," presents the view that even though sex may not be wanted, desired, or even possible following cancer, quality of life and relationship satisfaction are achieved through communication and non-genital intimacy., Conclusions: This study has demonstrated the complexity of perspectives about sexuality and intimacy post cancer, which has practical implications for those working in cancer care and survivorship. Therapists and other health professionals can play an important role in ameliorating concerns surrounding sexual wellbeing after cancer, by opening and facilitating discussion of sexuality and intimacy amongst couples affected by cancer, as well as providing information that normalizes a range of sexual and intimate practices.

Men can experience significant changes to their sexuality following the onset of cancer. However, research on men's sexuality post-cancer has focused almost exclusively on those with prostate and testicular cancer, despite evidence that the diagnosis and treatment for most cancers can impact on men's sexuality. This Australian qualitative study explores the experiences of changes to sexuality for 21 men across a range of cancer types and stages, sexual orientations and relationship contexts. Semi-structured interviews were analysed with theoretical thematic analysis guided by a material discursive intra-psychic approach, recognising the materiality of sexual changes, men's intrapsychic experience of such changes within a relational context and the influence of the discursive construction of masculine sexuality. Material changes included erectile difficulty, decreased desire, and difficulty with orgasm. The use of medical aids to minimise the impact of erectile difficulties was shaped by discursive constructions of 'normal' masculine sexuality. The majority of men reported accepting the changes to their sexuality post-cancer and normalised them as part of the natural ageing process. Men's relationship status and context played a key role managing the changes to their sexuality. We conclude by discussing the implications for clinical practice.

There is consistent evidence that health care professionals (hcps) are not addressing the sexual information and support needs of people with cancer. Thirty-eight Australian hcps across a range of professions working in cancer care were interviewed, to examine constructions of sexuality post-cancer, the subject positions adopted in relation to sexual communication, and the ways in which discourses and subject positions shape information provision and communication about sexuality. Participants constructed sexual changes post-cancer in physical, psychological and relational terms, and positioned such changes as having the potential to significantly impact on patient and partner well-being. This was associated with widespread adoption of a discourse of psychosocial support, which legitimated discussion of sexual changes within a clinical consultation, to alleviate distress, dispel myths and facilitate renegotiation of sexual practices. However, this did not necessarily translate into patient-centred practice outcomes, with the majority of participants positioning personal, patient-centred and situational factors as barriers to the discussion of sex within many clinical consultations. This included: absence of knowledge, confidence and comfort; positioning sex as irrelevant or inappropriate for some people; and limitations of the clinical context. In contrast, those who did routinely discuss sexuality adopted a subject position of agency, responsibility and confidence.

Research has increasingly recognised the profound impact that cancer can have upon embodied subjectivity. However, there has been little acknowledgement of the centrality of sexuality to subjectivity, and marginalisation of the experiences of intimate partners of people with cancer. This Australian qualitative study explores the post-cancer experiences of embodied sexual subjectivity for 44 people with cancer (23 women and 21 men) and 35 partners of people with cancer (18 women and 17 men) across a range of cancer types and stages. Semi-structured interviews were analysed with theoretical thematic analysis, guided by a post-structuralist approach to sexual subjectivity as a dynamic process of becoming that can change over time, and by Williams' [(1996). The vicissitudes of embodiment across the chronic illness trajectory. Body and Society, 2, 23-47] framework on post-illness embodiment. Participants took up the following post-cancer subject positions: 'dys-embodied sexual subjectivity' - characterised by bodily betrayal, sexual loss, lack of acceptance, depression, and anxiety; 're-embodied sexual subjectivity'--characterised by greater sexual confidence, acceptance, the exploration of non-coital sexual practices and increased relational closeness; and 'oscillating sexual subjectivity'--involving a shift between states of sexual dys-embodiment and sexual re-embodiment. The findings point to the importance of focusing on the sexual health of people with cancer and partners across the cancer trajectory.

It is widely accepted that cancer is an intersubjective experience that impacts upon the psychological well-being of people with cancer and informal carers, as well as on couple relationships. This qualitative study examined the nature and consequences of cancer on the relationship between informal carers and the person with cancer, from the perspective of Australian cancer carers. Sixty-two carers (42 women and 20 men), across a range of cancer types, stages and relationship dyads took part in semi-structured interviews. Participants reported that cancer had precipitated a change in roles and in the dynamics of the relationship, including having to take on quasi-medical tasks and decisions, neglecting self and other relationships, changes to the emotions or personality of the person with cancer, changed patterns of communication, and changes to sexuality and intimacy. The impact of the changed relationship included sadness, anger and frustration, as well as feelings of love and being closer together, resulting in relationship enhancement. Women were more likely to report changes in the person with cancer and to mourn the previous relationship, while more men reported relationship enhancement.

Women cancer carers report higher rates of distress than men; however, there is little understanding of the mechanisms underlying these gender differences. The aim of this study was to examine the potential mediating roles of burden of care, unmet needs, self-silencing, self-efficacy and optimism, and the potential moderating influence of social support, cancer stage, patient gender, time spent caring and other responsibilities, on gender differences in carer distress. Of 329 informal cancer carers (245 women, 119 men), women reported significantly more anxiety, burden of care and unmet needs than men. In the mediation analysis, gender differences in anxiety were fully explained by both the independent contribution and combination of: Disrupted Schedule, Health Problems and Emotional and Spiritual Unmet Needs. Women cared for both men and women patients, across a broad range of relationships, whereas men predominantly cared for their female partner. There was no gender difference in number of hours spent caring or in companionship, amount of support received, and additional responsibilities for children, housework or studies, and none of these factors acted as moderators of gender differences in anxiety. It is concluded that women's gendered role is associated with unmet needs and burden of care, resulting in greater anxiety., (© 2011 Blackwell Publishing Ltd.)

There is a growing body of evidence to show that cancer can result in dramatic changes in sexuality, sexual functioning, and intimate couple relationships, with significant implications for both quality of life and psychological well-being. However, the experiences of intimate partners are often neglected in research on sexuality and intimacy in the context of cancer. This study used a material-discursive framework and a qualitative methodology to investigate the ways in which intimacy and sexuality are renegotiated in the context of cancer, and what factors are associated with successful or unsuccessful renegotiation, from the perspective of partners caring for a person with cancer. Twenty participants were interviewed, across a range of cancer types, stages, and age groups. Eleven participants reported that they were unable to negotiate other ways of being sexually intimate when penetrative sexual intercourse was no longer physiologically possible or desirable. Nine were able to renegotiate sexual intimacy in the context of cancer to include practices previously positioned as secondary to "real sex," such as mutual masturbation, self masturbation, manual stimulation, oral sex, massage, the use of vibrators, kissing, and hugging. Grounded theory analysis identified two themes associated with renegotiation: "Alternative" sexual practices-redefining sexual intimacy, and couple communication and relationship context. Difficulties in renegotiation were associated with adherence to the coital imperative, sexual relationship or communication problems which existed prior to cancer, and the positioning of the person with cancer as a child or an asexual sick patient rather than a sexual partner. The implications for health professional intervention to ameliorate changes to sexuality in the context of cancer are discussed.

Changes in sexuality and intimacy after cancer were examined using open-ended questionnaire responses with 156 informal carers who were partners of a person with cancer. Interviews were conducted with 20 participants to examine changes in depth. Seventy-six percent of partners of a person with "nonreproductive" cancer types and 84% of partners caring for a person with cancer involving "reproductive" sites reported an impact on their sexual relationship. Cessation or decreased frequency of sex and intimacy was reported by 59% of the women and 79% of the men. Renegotiation of sexuality and intimacy after cancer was reported by only 19% of the women and 14% of the men. Reasons for changes to sexuality after cancer were the impact of cancer treatments, exhaustion due to caring, and repositioning of the person with cancer as a patient, not a sexual partner. Changes to sexuality were associated with reports of self-blame, rejection, sadness, anger, and lack of sexual fulfillment. Positive consequences of changes included accepting the changed sexual relationship and having increased closeness and intimacy. These findings reinforce the need to acknowledge the sexual needs of partners as well as people with cancer, by healthcare professionals working in cancer and palliative care.

Objective: Many studies have identified negative and distressing consequences experienced by informal cancer carers, but less attention has been given to positive and beneficial aspects of caring. This qualitative study examined the positive aspects of caring as subjectively constructed by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole., Method: Twenty-three bereaved informal cancer carers were interviewed, and their accounts were analyzed using a thematic analytical approach from a phenomenological perspective., Results: The participants were able to identify positive and beneficial aspects of caring. These included the discovery of personal strength, through adversity, acceptance, and necessity; the deepening of their relationship with the person for whom they cared; and personal growth through altered relationships with others and altered perspectives on living. Many participants gave accounts of focusing on these positive benefits when they reflected on their caring experiences., Significance of Results: We concluded that benefit finding in the face of adverse events serves an important function in allowing individuals to incorporate difficult experiences into their worldview in a meaningful way, thus maintaining positive beliefs about the world. This has implications for the development of interventions for informal cancer carers and for those who are bereaved following caring.