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

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

"Surviving discrimination by pulling together" : LGBTQI cancer patient and carer experiences of minority stress and social support

Background: Lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people with cancer and their carers report poorer psychological outcomes than the general non-LGBTQI cancer population. There is growing acknowledgement that these health inequities can be explained by minority stress, which can be buffered by social support. Study Aim: To examine subjective experiences of minority stress and social support for LGBTQI people with cancer and their carers, drawing on qualitative findings from the Out with Cancer study. Method: An online survey including open ended items was completed by 430 LGBTQI cancer patients and 132 partners and other carers, representing a range of tumor types, sexual and gender identities, age and intersex status. A sub-sample of 104 patients and 31 carers completed an interview, with a follow-up photovoice activity and second interview completed by 45 patients and 10 carers. Data was thematically analysed using an intersectional theoretical framework. Results: Historical and present-day experiences of discrimination, violence, family rejection and exclusion created a legacy of distress and fear. This impacted on trust of healthcare professionals and contributed to distress and unmet needs in cancer survivorship and care. Social support, often provided by partners and other chosen family, including intimate partners and other LGBTQI people, buffered the negative impacts of minority stress, helping LGBTQI patients deal with cancer. However, some participants lacked support due to not having a partner, rejection from family of origin and lack of support within LGBTQI communities, increasing vulnerability to poor psychological wellbeing. Despite the chronic, cumulative impacts of minority stress, LGBTQI patients and carers were not passive recipients of discriminatory and exclusion in cancer care, demonstrating agency and resistance through collective action and advocacy. Conclusion: LGBTQI people have unique socio-political histories and present-day psycho-social experiences that contribute to distress during cancer. Social support serves to buffer and ameliorate this distress. There is a need for cancer healthcare professionals and support services to be aware of and responsive to these potential vulnerabilities, including the intersectional differences in experiences of minority stress and social support. There is also a need for recognition and facilitation of social support among LGBTQI people with cancer and their carers

LGBTQI cancer patients' quality of life and distress : a comparison by gender, sexuality, age, cancer type and geographical remoteness

Background: There is growing acknowledgement of the psycho-social vulnerability of lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people with cancer. The majority of research to date has focused on cisgender adults with breast or prostate cancer. Study Aim: This study examined psycho-social factors associated with distress and quality of life for LGBTQI cancer patients and survivors, across a range of sexualities and gender identities, intersex status, tumor types, ages and urban/ rural/remote location using an intersectional theoretical framework. Method: 430 LGBTQI people with cancer completed an online survey, measuring distress, quality of life (QOL), and a range of psycho-social variables. Participants included 216 (50.2%) cisgender women, 145 (33.7%) cisgender men, and 63 (14.7%) transgender and gender diverse (TGD) people. Thirty-one (7.2%) participants reported intersex variation and 90 (20%) were adolescents or young adults (AYA), aged 15-39. The majority lived in urban areas (54.4%) and identified as lesbian, gay or bisexual (73.7%), with 10.9% identifying as bisexual, and 10.5% as queer, including reproductive (32.4%) and non-reproductive (67.6%) cancers. Results: Forty-one percent of participants reported high or very high distress levels, 3-6 times higher than previous non-LGBTQI cancer studies. Higher rates of distress and lower QOL were identified in TGD compared to cisgender people, AYAs compared to older people, those who identify as bisexual or queer, compared to those who identify as lesbian, gay or homosexual, and those who live in rural or regional areas, compared to urban areas. Elevated distress and lower QOL was associated with greater minority stress (discrimination in life and in cancer care, discomfort being LGBTQI, lower outness) and lower social support, in these subgroups. There were no differences between reproductive and non-reproductive cancers. For the whole sample, distress and poor QOL were associated with physical and sexual concerns, the impact of cancer on gender and LGBTQI identities, minority stress, and lack of social support. Conclusion: LGBTQI people with cancer are at high risk of distress and impaired QOL. Research and oncology healthcare practice needs to recognize the diversity of LGBTQI communities, and the ways in which minority stress and lack of social support may affect wellbeing

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

LGBTQI inclusive cancer care : a discourse analytic study of health care professional, patient and carer perspectives

Background: Awareness of the specific needs of LGBTQI cancer patients has led to calls for inclusivity, cultural competence, cultural safety and cultural humility in cancer care. Examination of oncology healthcare professionals’ (HCP) perspectives is central to identifying barriers and facilitators to inclusive LGBTQI cancer care. Study Aim: This study examined oncology HCPs perspectives in relation to LGBTQI cancer care, and the implications of HCP perspectives and practices for LGBTQI patients and their caregivers. Method: 357 oncology HCPs in nursing (40%), medical (24%), allied health (19%) and leadership (11%) positions took part in a survey; 48 HCPs completed an interview. 430 LGBTQI patients, representing a range of tumor types, sexual and gender identities, age and intersex status, and 132 carers completed a survey, and 104 LGBTQI patients and 31 carers undertook an interview. Data were analysed using thematic discourse analysis. Results: Three HCP subject positions – ways of thinking and behaving in relation to the self and LGBTQI patients – were identified:’Inclusive and reflective’ practitioners characterized LGBTQI patients as potentially vulnerable and offered inclusive care, drawing on an affirmative construction of LGBTQI health. This resulted in LGBTQI patients and their carers feeling safe and respected, willing to disclose sexual orientation and gender identity (SOGI) status, and satisfied with cancer care. ‘Egalitarian practitioners’ drew on discourses of ethical responsibility, positioning themselves as treating all patients the same, not seeing the relevance of SOGI information. This was associated with absence of LGBTQI-specific information, patient and carer anxiety about disclosure of SOGI, feelings of invisibility, and dissatisfaction with healthcare. ‘Anti-inclusive’ practitioners’ expressed open hostility and prejudice towards LGBTQI patients, reflecting a cultural discourse of homophobia and transphobia. This was associated with patient and carer distress, feelings of negative judgement, and exclusion of same-gender partners. Conclusion: Derogatory views and descriptions of LGBTQI patients, and cis-normative practices need to be challenged, to ensure that HCPs offer inclusive and affirmative care. Building HCP’s communicative competence to work with LGBTQI patients needs to become an essential part of basic training and ongoing professional development. Visible indicators of LGBTQI inclusivity are essential, alongside targeted resources and information for LGBTQI people

Almost invisible : a review of inclusion of LGBTQI people with cancer in online patient information resources

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

Women's experiences of sexual embodiment in the context of cancer

Cancer forms a significant health issue for women in Australia and globally, and can result in a range of embodied changes that affect women’s experiences of sex and sexuality, continuing long after the conclusion of treatment. Cancer and cancer treatments can result in a range of bodily changes, including vaginal dryness, pain on intercourse, the loss of sexual desire, as well as disfigurement, scarring, bowel and bladder dysfunction, fatigue, and premature menopause. In addition, women report experiencing higher levels of depression and anxiety after cancer, as well as diminished body image and lowered feelings of attractiveness. Previous research has predominantly focused on the material and intrapsychic experiences of sexual changes after cancer, with discursive factors receiving less attention. However, women make sense of their subjectivities following cancer in relation to available discourses of cancer, heterosexuality and femininity. This suggests that research needs to pay attention to cultural discourse, as well as materiality and the intrapsychic. Further, there is a need to conduct research that privileges women’s subjective embodied experiences as sources of knowledge, in order to examine how women experience embodied sexual subjectivity after cancer. This study explored how women construct a sense of their bodies and sexual ‘selves’ in the context of cancer. In-depth semi-structured interviews were conducted with sixteen women across a range of ages, cancer types, and heterosexual relational contexts, including women who were, and were not, currently not in a long-term relationship. A material-discursive-intrapsychic theoretical framework was employed, within a critical realist epistemology. A thematic discourse analysis was conducted drawing on feminist poststructuralist approaches to subjectivity, and the thematic organisation of interview material around subject positions. Three overall themes were identified in the analysis: The Medical Body, The Abject Body and Positioning the Body Inside and Outside ‘Sex’. In the theme ‘The Medical Body’, the women moved between positioning their bodies as ‘object’, without agency and distanced from discourses of femininity and sexuality, and as ‘subject’, taking up more agentic subject positions and beginning to re-embody ‘sex’ after cancer. In the theme ‘The Abject Body’, the women positioned their bodies beyond abnormality, outside discourses of idealised femininity, and out of control. Accounts of taking up the abject body were characterised by failure, self-blame and shame, while accounts of managing and resisting the abject body included concealment, resisting discourses of feminine beauty and positioning the body as the site of personal transformation. In the theme, ‘Positioning the Body Inside and Outside ‘Sex’, the women positioned their subjectivity around hegemonic cultural constructions of hetero-sex. Accounts of the women positioning themselves inside ‘sex’ included experience of bodily ease during sex, or containing risk to sexual subjectivity by managing the body during sex. Accounts of the women positioning their subjectivity outside ‘sex’ included experiencing loss of sexual desire, vaginal dryness and pain on intercourse, or absence of sexual relationships. Overall, in this analysis 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 their embodied sexual subjectivity. Implications of this research for theoretical, research, policy and clinical practice are examined, focusing on the need to create ‘space’ for women’s bodies and embodied experiences after cancer

Psychosocial aspects of women's sexual and reproductive well-being after cancer

In this chapter we provide a review of psychosocial aspects and adjustment to diagnosis and treatment of reproductive cancer, with a focus on body dissatisfaction and sexual embodiment. We draw on interviews we have conducted with women and include discussion of the impact of a broader range of cancers on sexual and reproductive well-being, where relevant. The context of women’s lives is considered in a review of the influence of life stage and couple relationships on adjustment. Finally, a review of the implications of sociocultural context and the role of cultural discourse on current cancer research is also provided

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

Abstract 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