"Queer people are excellent caregivers, but we're stretched so very thin": Psychosocial wellbeing and impacts of caregiving among LGBTQI cancer carers.

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.

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.

Disrupted identities, invisibility and precarious support: a mixed methods study of LGBTQI adolescents and young adults with cancer.

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.

Men of refugee and migrant backgrounds in Australia: a scoping review of sexual and reproductive health research.

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.

The embodiment of childhood abuse and anorexia nervosa: A body mapping study.

Childhood trauma has long been implicated in the development of anorexia nervosa and is known to impact more women than men. Still, less is known about the meaning women attribute to food and bodily practices and how they contribute to feminine subjectivity. In this article, we examine the subjective experiences of women with histories of childhood abuse and anorexia and women who did not develop an eating disorder. Through a visual narrative analysis of eight body maps and narratives, we identified five themes: "time and the body have a way of showing what matters," "femininity and family," "sexual subjectivities and food meanings," "voices, dissociation, and sexual subjectivities," and "religion and healthism." In women with anorexia, specific eating and bodily practices reconstructed the traumatic events to align with the available cultural discourses related to health, religion, and family and had implications for their feminine and sexual subjectivities and self-worth. This research showcased how arts-based methodologies add value and advance knowledge about the role of culturally available representations in the development of anorexia and has implications for therapy and prevention of anorexia.

Mothers' experiences of wellbeing and coping while living with rheumatoid arthritis: a qualitative study.

BACKGROUND: Rheumatoid arthritis (RA) can result in difficulties for mothers when undertaking daily care activities and increased psychological distress. However, few studies have examined how women with RA subjectively experience coping and wellbeing as part of their motherhood. METHODS: Twenty mothers with a diagnosis of RA and a dependent child (18 years or younger) who were living in Australia took part in a semi-structured interview between June and November 2017. Purposive sampling was undertaken to include participants across degree of current RA severity, number and age of children, and having received a diagnosis before or after a first child to take account of variability across these experiences. A qualitative thematic analysis was conducted on the interview transcripts. RESULTS: The following themes were identified: 'Burden and complexity in the mothering role', 'Losing control: Women's experiences of distress', and 'Adjusting and letting go: Women's experiences of wellbeing'. Experiences of distress, including feelings of failure, were associated with accounts of a loss of control over mothering practices among women, regardless of child age. In contrast, accounts of adjusting mothering practices and relinquishing control were associated with reports of enhanced wellbeing. In addition, some mothers reported greater ease due to increased independence of older children. The absence of social support exacerbated burden and distress in the women's accounts, while the availability of support alleviated burden and was associated with reports of wellbeing. CONCLUSION: Health professionals and services can provide support to mothers with RA by addressing feelings of failure, acknowledging strategies of adjustment and letting go, and encouraging access to social support.

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

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

What do women want? Migrant and refugee women's preferences for the delivery of sexual and reproductive healthcare and information.

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.

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.

Trans Women's Responses to Sexual Violence: Vigilance, Resilience, and Need for Support.

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.

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.

Beyond illegality: Primary healthcare providers' perspectives on elimination of female genital mutilation/cutting.

AIMS AND OBJECTIVES: To report primary healthcare providers' perspectives on elimination of female genital mutilation/cutting (FGM/C). BACKGROUND: Eradication of FGM/C by 2030 is one of the United Nations Sustainable Development goals. World Health Organization recognises the unique role of nurses and other primary healthcare providers. However, their voices on the current legislative approach are underreported. These voices are important in informing directions that can expedite achievement of the global goal. DESIGN: Qualitative interpretivist phenomenology. METHODS: This qualitative study used purposive sampling approach and involved 19 individual interviews conducted face to face or by telephone with Australian primary healthcare providers. Data collected between October and December 2019 were transcribed verbatim and thematically analysed. Three themes exploring Australian healthcare providers' perspectives on elimination of FGM/C were identified, namely understanding Australian laws against FGM/C; perspectives on culturally sensitive education; and exploring public awareness raising activities in Australia. This study was guided by Consolidated Criteria for Reporting Qualitative Research, the checklist for qualitative studies. RESULTS: "Understanding Australian laws against FGM/C" identified participants' knowledge that FGM/C is illegal in Australia and that mandatory reporting applies if a child is or at risk of being taken oversees for the procedure. Through "Perspectives on culturally sensitive education," the participants argued that education is the key to questioning the practice of FGM/C. "Exploring public awareness-raising activities in Australia" described the need for collective action germane to FGM/C eradication. CONCLUSIONS: This study emphasised that laws and legislation prohibiting FGM/C need to be complemented with culturally sensitive education and public awareness-raising activities, to produce optimal outcome for the elimination of FGM/C in Australia. RELEVANCE TO CLINICAL PRACTICE: Voices of these healthcare providers are crucial for FGM/C to be eradicated. Listening and acting on these voices are important in achieving the global sustainable development goal of eradicating FGM/C.

"Extreme emotions" - the impact of reproductive life events for women living with bipolar disorder.

Little is known about how women with bipolar disorder construct and experience reproductive life events across the lifespan. We analyzed qualitative data from 29 semi-structured interviews with women aged 22-63 years (reproductive, menopause and post-menopause phases) using thematic analysis through a social constructionist framework. Themes of "Losing a sense of self-agency and self-worth" contained accounts of feeling out of control because of both bipolar disorder and reproductive life events. "Building a sense of personal autonomy and positive self-image" included accounts of acceptance and management of mood change over time, particularly for women in menopause and post-menopause life phases.

Sexual violence and safety: the narratives of transwomen in online forums.

An online forum analysis was conducted to explore experiences of sexual violence and safety among transwomen, with a particular focus on transwomen of colour. Four online forums were chosen for the analysis. Three key themes were identified: dating and violence in intimate relationships; fear of violence and safety strategies; and coping after sexual assault. Forum posters faced heightened gender policing and scrutiny, due to not conforming to normative ideals of femininity. Femininity was also predicated on white, middle-class status, and associated with domesticity and romance. As a result, expressions of femininity from non-white backgrounds could be read as deviant or excessive. The intersection of deviation from gender norms and femininity based on whiteness meant that transwomen of colour faced disproportionate levels of violence, both in public and private spaces. Transwomen of colour also faced disadvantage due to participation in higher-risk forms of sex work, low socioeconomic status and employment, and institutional discrimination. Coping mechanisms to deal with cumulative disadvantage included seeking support from health professionals and transgender community networks. However, it also included more harmful forms of self-medicating such as heavy alcohol and drug use, self-harm and suicide attempts.

'It's Always About the Eating Disorder': Finding the Person Through Recovery-Oriented Practice for Bulimia.

Bulimia is an eating disorder characterised primarily by binging and 'inappropriate' compensatory behaviours, such as purging or excessive exercise. Many individuals with bulimia experience chronic disordered eating, dissatisfaction with treatment, and difficulty establishing a 'new life'. Recovery-oriented practice, which focuses holistically on the person and their own aspirations for treatment, has recently been advocated in the treatment of eating disorders in Australia and other countries. However, questions have been raised about how this practice might be integrated into existing treatment approaches. Taking a social constructionist approach and using a case study of one woman's account, together with literature on patients' treatment experiences, we examined recovery from bulimia. Three themes were identified: bulimia was constructed as 'consuming one's life', an experience protracted through treatment ('treatment and becoming the eating disorder'), which makes life 'beyond treatment and attempting to live without bulimia' challenging. Based on this analysis, we argue that recovery-oriented practice, while seemingly commensurate with patients' needs, may be challenged by long-standing meanings of mental illness and experience of bulimia specifically.

Coverage of cancer services in Australia and providers' views on service gaps: findings from a national cross-sectional survey.

BACKGROUND: In response to the increasing cancer prevalence and the evolving health service landscape across the public and private health sectors in Australia, this study aimed to map cancer services and identify factors associated with service provision and important service gaps. METHODS: A prospective, cross-sectional survey was conducted throughout 2016. Extensive search strategies identified Government or privately-owned, hospital or community-based healthcare organisations with dedicated cancer services. One nominated staff member from each organisation answered a purpose specific online/paper questionnaire. Descriptive statistics, standardised rates, and single level and multilevel multinomial logistic regression were used to analyse the data. Analysis was augmented with a qualitative descriptive analysis of open-ended questions. RESULTS: From the 295 eligible organisations with a cancer service in Australia, 93.2% participated in the survey. After adjusting for remoteness, for-profit companies were significantly more likely than Government operated services to provide only one or two types of cancer services (e.g. radiotherapy) in a limited range of settings (e.g. day hospital with no in-patient or home care) (p < 0.001) and less likely to provide comprehensive cancer services (p < 0.001). After adjusting for ownership and the respondent's role in the organisation, respondents located in remote regions of Australia were more likely to identify cancer services that are dependent upon specialist medical practitioners as the most important service gaps in their region (p = 0.003). Despite 76.0% of organisations across Australia offering some type of supportive care or survivorship services, providers identified this group of services as the most pressing service gaps in major cities, rural and remote regions alike (standardised rate: 47.9% (95%CI: 43.6-57.4%); p < .000). This included the need for improved integration, outreach and affordability. CONCLUSIONS: The broad range of cancer services, settings and ownership identified by this survey highlights the complexity of the Australian healthcare system that cancer survivors must navigate and the challenges of providing comprehensive cancer care particularly in rural and remote regions. Whilst the significant role of supportive care and survivorship services are increasingly being recognised, the findings from this survey support calls for innovative service models and funding mechanisms that expand the focus from preventing and treating cancer to supporting cancer survivors throughout the cancer continuum and promoting the delivery of integrated and equitable cancer care across the public and private sectors.

Infertility-related distress following cancer for women and men: A mixed method study.

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.

Systematic review of fertility-related psychological distress in cancer patients: Informing on an improved model of care.

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.

'Age of despair', or 'when life starts': migrant and refugee women negotiate constructions of menopause.

There has been a call for research on migrant and refugee women's negotiation of diverse discourses and cultural constraints associated with sexual embodiment, including menopause, in order to facilitate sexual and reproductive health and understand gendered subjectivity. This study examined the construction and experience of menopause among migrant and refugee women who had settled in Australia or Canada in the last 10 years. Eighty-four individual interviews and 16 focus groups comprising 85 participants were conducted (total n = 169), with women aged 18 years and over from Afghanistan, India (Punjab), Iraq, Somalia, South Sudan, Sri-Lanka (Tamil), Sudan and various South American (Latina) backgrounds. Thematic decomposition identified three discursive themes: Menopause as the Age of Despair; a Discourse of Silence and Secrecy; and Menopause as a Life Stage - or when Life Starts. Negative constructions of menopause, associated with silence and secrecy, were evident across different cultural groups, with implications for women's positioning and experience of menopausal change and embodiment. However, resistance to negative discourse was also evident. This was primarily associated with having received menopause education and more open communication about menopausal change, suggesting that education and health information can facilitate affirming aspects of menopause.