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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.

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.

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.

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.

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.

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.

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.

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.

PurposeThe purpose of this research is to understand how people living with chronic illness understand their healthcare needs, particularly as they can be disrupted by natural hazards events (e.g. earthquakes, flooding and landslides), which can result in chronic health conditions becoming acute. Research has shown that, because of such disruption, people with chronic illness face the greatest risk of adverse health outcomes during a disaster, placing significant demand on healthcare systems.Design/methodology/approachThe research draws on a narrative analysis of in-depth, semi-structured interviews with eight people who have a chronic illness and live in a hazard-prone location, namely Petone, Lower Hutt, Aotearoa New Zealand.FindingsTwo major narrative themes were identified: “Social Capital”, which included the three subthemes of community, social connection and support and family and friends. Tellers also experienced a strong sense of “Independence”, as demonstrated through seven subthemes that included declaration, defiance, rules, experience, acceptance, responsibility, self-surveillance and self-management.Practical implicationsPractice output from this research includes the development of fit for purpose emergency management policies and other educational resources to ensure equity, access and choice for people with a chronic illness and their communities.Social implicationsThis research produces in-depth knowledge and insight into the preparedness and response needs of people who live with a chronic illness. This is an under-research area in disaster management in Aotearoa New Zealand.Originality/valueRoutine medical treatment for people living with chronic illness can be disrupted by natural hazard events (e.g. earthquakes, flooding and landslides), which can result in chronic health conditions becoming acute. Research has shown that, because of such disruption, the chronically ill face the greatest risk of adverse health outcomes during a disaster, placing significant demand on healthcare. This research investigates how people living with chronic illness experience disaster preparedness and response while residing in a hazard-prone location, namely Petone, Lower Hutt, Aotearoa New Zealand. The study argues that it is imperative to acknowledge the experiences of people with chronic illness as they provide specific insights into their needs during a disaster.

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.