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.

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.

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

OBJECTIVE: There is growing recognition that health care professionals (HCPs) and policy makers are insufficiently equipped to provide culturally competent care to lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) cancer patients and their families. We examined HCP attitudes, knowledge, and practices regarding LGBTQI cancer care using a mixed-methods research design. METHOD: Surveys were completed by 357 oncology HCPs in nursing (40%), medical (24%), allied health (19%), and clinical leadership roles (11%); 48 of the surveyed HCPs were interviewed. RESULTS: Most HCPs reported being comfortable treating LGBTQI patients, but reported low levels of confidence and knowledge and systemic barriers to LGBTQI cancer care. Most wanted more education and training, particularly on trans and gender-diverse people (TGD) and those born with intersex variations. CONCLUSION: Education of HCPs and health system changes are required to overcome barriers to the provision of culturally competent cancer care for LGBTQI patients. PRACTICE IMPLICATIONS: These findings reinforce the need for inclusion of LGBTQI content in HCP education and professional training curricula, and institutional support for LGBTQI-inclusive practice behaviours. This includes administrative and visual cues to signal safety of LGBTQI patients within cancer care, facilitating inclusive environments, and the provision of tailored patient-centred care.

Barriers and Facilitators to Integrative Oncology Services in Australia: A Changed Mind Set Required.

Objectives: This study aimed to explore barriers and facilitators to integrative oncology (IO) service provision and access in Australia. Design: The study design was mixed method with two substudies: a cross-sectional national cancer service survey of public and private sectors; and focus group interviews and an online survey of cancer survivors. Triangulation analysis of qualitative and quantitative data was used to identify and interrogate meta-themes. Subjects: The cancer service response rate was 93.2% (n = 275/295); 71/275 (25.8%) provided IO. Thirty-three cancer survivors from Anglo-European, Arabic, Vietnamese, and Chinese backgrounds were interviewed, and 121 survivors answered the online survey. Results: IO gaps were substantial, with no services in many regions and cities; a lack of diversity and availability of therapeutic options, including culturally appropriate services; and a mismatch between the high use of natural health products by survivors and types of IO services provided. Two overlapping meta-themes were identified: "barriers and facilitators" and "peoples and institutions"; each with four subthemes, respectively, "access/provision, affordability/funding, information/evidence, and culture/values" and "cancer survivors, healthcare professionals, organizations, and policies." While affordability/funding was the greatest barrier to survivors and providers, solutions varied (e.g., building a stronger evidence-base, business model advice) and often conflicted (e.g., public verses private sector funding). The most insidious barrier was professional/corporate cultures and values that influenced hospital policies (or lack thereof), conceptions of evidence and the therapeutic alliance. Survivors called for a change of mindset in the culture of medicine and value-based health care. Conclusions: The barriers and facilitators to IO services were more complex than building the evidence-base and demonstrating value to justify funding. To achieve a better alignment of patients' preferences with service provision, providers require more guidance on clinical governance, business models, local service gaps, and interprofessional collaboration. National strategies and funding models are needed to ensure appropriate, equitable IO service provision.

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.

Parents' experiences of information-seeking and decision-making regarding complementary medicine for children with autism spectrum disorder: a qualitative study.

BACKGROUND: Complementary and alternative medicine and therapies (CAM) are widely used by parents of children with autism spectrum disorder (ASD). However, there is a gap in our understanding of how and why parents of children with ASD make decisions about CAM treatment, and how "evidence" influences their decision-making. The aim of this study was to explore views and perspectives on CAM decision-making among parents of children with ASD in Australia. METHODS: Semi-structured interviews were conducted with parents of children with ASD (18 years and under) who were living in Australia. The interviews were digitally recorded, transcribed and then analysed using thematic analysis. RESULTS: Twenty-one parents were interviewed (20 women and one man). The mean age of participants was 43 years, (SD = 5.12 years), the majority of whom were born in Australia (71%), and almost half (43%) had a bachelor degree or higher. Three main themes were identifiedin the thematic analysis. First theme was 'Parents' experiences of researching CAM treatments, the second theme was, "Navigating CAM information and practices", which comprises of the subthemes: Assessing information on CAM treatments' What counts as 'evidence'? and Assessing the impact of CAM treatments on the child - What counts as effective?, and the final theme was, "Creating a central and trustworthy source about CAM". Across themes parents' CAM decision-making was described as pragmatic, influenced by time, cost, and feasibility. Parents also reported that information on CAM was complex and often conflicting, and the creation of a centralised and reliable source of information on CAM was identified as a potential solution to these challenges. CONCLUSION: The development of evidence-based information resources for parents and supporting CAM health literacy may assist with navigating CAM decision-making for children's with ASD.

Hope, burden or risk: a discourse analytic study of the construction and experience of fertility preservation in the context of cancer.

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.

'Normal' and 'failing' mothers: Women's constructions of maternal subjectivity while living with multiple sclerosis.

Multiple sclerosis causes physical and cognitive impairment that can impact women's experiences of motherhood. This study examined how women construct their maternal subjectivities, or sense of self as a mother, drawing on a framework of biographical disruption. A total of 20 mothers with a multiple sclerosis diagnosis took part in semi-structured interviews. Transcripts were analysed using thematic decomposition to identify subject positions that women adopted in relation to cultural discourses of gender, motherhood and illness. Three main subject positions were identified: 'The Failing Mother', 'Fear of Judgement and Burdening Others' and 'The Normal Mother'. Women's sense of self as the 'Failing Mother' was attributed to the impact of multiple sclerosis, contributing to biographical disruption and reinforced through 'Fear of Judgement and Burdening Others' within social interactions. In accounts of the 'Normal Mother', maternal subjectivity was renegotiated by adopting strategies to manage the limitations of multiple sclerosis on mothering practice. This allowed women to self-position as 'good' mothers. Health professionals can assist women by acknowledging the embodied impact of multiple sclerosis on maternal subjectivities, coping strategies that women employ to address potential biographical disruption, and the cultural context of mothering, which contributes to women's experience of subjectivity and well-being when living with multiple sclerosis.

The treatment of booking gestational diabetes mellitus (TOBOGM) pilot randomised controlled trial.

BACKGROUND: We piloted a randomised controlled trial (RCT) comparing pregnancy outcomes among women with booking gestational diabetes (GDM) receiving immediate or deferred treatment. METHODS: Consecutive, consenting women < 20 weeks gestation, with GDM risk factors attending the hospital book-in clinic, completed an oral glucose tolerance test (OGTT). Clinicians were blinded to OGTT results. Women fulfilling World Health Organisation GDM criteria were randomised to either clinic referral /ongoing treatment (Treated Group n = 11), or no treatment (No Treatment Group n = 10). Women without 'Booking GDM' ('Decoys' n = 58) and those in the No Treatment Group had a repeat OGTT at 24-28 weeks (with GDM treated if diagnosed). Midwives and mothers were asked to complete surveys and attend focus groups before and after the study respectively regarding their experiences and expectations of the study protocol. RESULTS: Sufficient women completed each step of the RCT. Gestation at OGTT was late at 18 ± 2 weeks with Treated and No Treatment groups largely similar. At 24-28 weeks gestation, GDM was present in 8/9 (89%) in the No Treatment group and 11/56 (20%) Decoys. NICU admission was highest in the Treated group (36% vs 0% p = 0.043), largely due to small for gestational age, and Large for Gestational Age babies greatest in the No Treatment group (0% vs 33% p = 0.030). CONCLUSION: An RCT deferring 'Booking GDM' treatment is feasible. Most women with untreated 'Booking GDM' in mid 2nd trimester had GDM at 24-28 weeks. Early treatment may have both benefits and harms. A full RCT is needed. TRIAL REGISTRATION: Australia New Zealand Clinical Trials Registry ACTRN12615000974505. Registered 17th May 2015; URL: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=369100&isReview=true Retrospectively Registered.

Australian integrative oncology services: a mixed-method study exploring the views of cancer survivors.

BACKGROUND: The significant use of traditional and complementary medicine (T&CM) by cancer survivors is well documented. The aim of this study was to explore cancer survivors' views on integrating T&CM services with conventional cancer care. METHOD: A mixed-method study design with an emphasis on qualitative methodology was used to conduct and analyse four focus group interviews and an on-line survey. Purposive sampling recruited 33 cancer survivors and caregivers from Arabic, Vietnamese, Chinese and Anglo-European Australian backgrounds who participated in one of four focus group interviews, and 121 cancer survivors who responded to an on-line survey. The inductive thematic analysis was augmented with a descriptive statistical analysis. RESULTS: Most participants had used T&CM therapies or consulted T&CM practitioners as an adjuvant during and/or after their initial cancer treatment. Two themes emerged: 'positive perceptions and experiences' and 'barriers and unmet needs'. Participants emphasised that T&CM was not a 'luxury item', rather it was considered important for managing side effects and comorbidities, rehabilitation and quality of life. A wide range of complex, interrelated barriers and solutions to IO service provision and access were identified. Structural barriers included inadequate service provision, medical practitioner attitudes, logistical constraints and funding. Personal barriers were influenced by the severity of impairment and disability; attitudes, beliefs and knowledge about T&CM; and available resources (e.g. finances, time, transport). Unmet need and inequitable access was exacerbated by geographical location, ethnicity and ability to pay. There was a mismatch between where participants were accessing T&CM services and their preference for IO service delivery. Participants perceived hospital-based IO services availability to have several benefits, including the T&CM practitioners having more expert knowledge about cancer care, the convenience of co-locating oncology services, and potentially lower out-of-pocket costs. CONCLUSION: Patients' use, preferences and needs for T&CM services in the oncology setting are important for informing service provision. Inequitable, unmet need reflected the increasing demand and expectation from patients for their oncology teams to be well informed about the benefits, risks and indications for T&CM use, and for the public and private health sectors to formally integrate and fund IO services.

Need for information, honesty and respect: patient perspectives on health care professionals communication about cancer and fertility.

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) (X2(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.

"Is it menopause or bipolar?": a qualitative study of the experience of menopause for women with bipolar disorder.

BACKGROUND: Menopause can be a time of change for women and may be marked by disturbances in mood. For women living with a mental illness, such as bipolar disorder, little is known about how they experience mood changes during menopause. This study aimed to explore how women with bipolar disorder constructed mood changes during menopause and how this impacted on treatment decisions. METHODS: Semi-structured interviews were undertaken with fifteen women who reported they had been diagnosed with bipolar disorder. Data was analysed using thematic analysis guided by a social constructionist framework. RESULTS: Themes identified included 'Constructions of mood change: menopause or bipolar disorder?',' Life events, bipolar disorder and menopause coming together'; 'Treatment choices for mood change during menopause'. CONCLUSIONS: The accounts suggested that women related to the experience of mood changes during menopause through the lens of their existing framework of bipolar disorder, with implications for understanding of self and treatment choices.

Experiencing menopause in the context of cancer: Women's constructions of gendered subjectivities.

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.

Constructions and experiences of motherhood in the context of an early intervention for Aboriginal mothers and their children: mother and healthcare worker perspectives.

BACKGROUND: The colonisation of Australia has been associated with traumatic consequences for Aboriginal health and wellbeing, including the breakdown of the traditional family unit and negative consequences for the mother/child relationship. Early-intervention programs have been developed to assist families to overcome disadvantage and strengthen mother/child attachment. However, there is no research examining Aboriginal women's subjective experiences and constructions of motherhood in the context of such programs, and no research on the perceived impact of such programs, from the perspective of Aboriginal mothers and healthcare workers (HCWs), with previous research focusing on child outcomes. METHOD: Researchers conducted participant observation of an early intervention program for Aboriginal mothers and young children over a 6 month period, one-to-one interviews and a focus group with 10 mothers, and interviews with nine HCWs, in order to examine their perspectives on motherhood and the intervention program. RESULTS: Thematic analysis identified 2 major themes under which subthemes were clustered. Constructions of motherhood: 'The resilient mother: Coping with life trauma and social stress' and 'The good mother: Transformation of self through motherhood'; Perspectives on the intervention: '"Mothers come to life": Transformation through therapy'; and '"I know I'm a good mum": The need for connections, skills and time for self'. CONCLUSIONS: The mothers constructed themselves as being resilient 'good mothers', whilst also acknowledging their own traumatic life experiences, predominantly valuing the peer support and time-out aspects of the program. HCWs positioned the mothers as 'traumatised', yet also strong, and expressed the view that in order to improve mother/child attachment a therapeutic transformation is required. These results suggest that early interventions for Aboriginal mothers should acknowledge and strengthen constructions of the good and resilient mother. The differing perspectives of mothers and HCWs on the role and impact of the early intervention program reinforces the need for Aboriginal mothers to be involved in the design and implementation of services aimed at assisting their families.

Women's Construction of Embodiment and the Abject Sexual Body After Cancer.

Cancer and cancer treatments can cause significant changes to women's sexual well-being. We explored how women construct a sense of their bodies and sexual "selves" in the context of cancer. Sixteen women, across a range of ages (20-71 years), cancer types, and cancer stages, took part in in-depth semistructured interviews. We conducted a thematic discourse analysis, drawing on feminist poststructuralist theory, identifying "the abject body" as a dominant theme. Participants constructed abject bodies as being "beyond abnormality," "outside idealized discourses of embodied femininity," and "out of control." The women's accounts varied in management and resistance of the abject body discourse, through bodily practices of concealment, resisting discourses of feminine beauty, and repositioning the body as a site of personal transformation. The corporeality of the cancerous body can be seen to disrupt hegemonic discourses of femininity and sexuality, with implications for how women practice and make meaning of embodied sexual subjectivity.