LGBTQI Sexual Well-Being and Embodiment After Cancer: A Mixed-Methods Study.

This study examined lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) cancer patients' sexual well-being post-cancer, and the associations between sexual well-being and social support, physical concerns, distress, quality of life (QOL), and coping. We used a mixed-methods approach, including 430 surveys and 103 interviews, representing a range of tumor types, sexual and gender identities, age groups, and intersex status. The findings indicated that LGBTQI people with cancer experience declines in sexual well-being following cancer, which are associated with reduced QOL, greater physical concerns, and lower social support. The perceived helpfulness of coping mechanisms was associated with greater sexual well-being across genders, with cisgender men reporting the sharpest declines in sexual well-being and highest use of coping mechanisms. Across all groups, searching for information online was the most frequently used coping mechanism, with support groups and counseling the most under-utilized. Qualitative findings facilitated interpretation of these results, providing examples of ways in which cancer impacted sexual well-being and how physical changes influence sexual embodiment or desire to engage in sex. Concerns about reduced sexual desire and activity, associated with changes to breasts, vulva, vagina, penis, erectile dysfunction, incontinence, scarring, and stoma, reflect previous findings in the non-LGBTQI cancer population. Unique to this population are the impact of physical changes on LGBTQI embodiment, including disruption to sexual and gender identities, and feelings of disconnection from queer communities. Addressing LGBTQI sexual well-being within oncology healthcare is a matter of sexual and reproductive justice, for a population whose needs are often overlooked within cancer care.

Working together with people with intellectual disability to make a difference: a protocol for a mixed-method co-production study to address inequities in cervical screening participation.

Introduction: Cervical cancer is one of the most preventable cancers yet remains a disease of inequity for people with intellectual disability, in part due to low screening rates. The ScreenEQUAL project will use an integrated knowledge translation (iKT) model to co-produce and evaluate accessible cervical screening resources with and for this group. Methods: Stage 1 will qualitatively explore facilitators and barriers to screening participation for people with intellectual disability, families and support people, healthcare providers and disability sector stakeholders (n ≈ 20 in each group). An accessible multimodal screening resource, accompanying supporting materials for families and support people, and trauma-informed healthcare provider training materials will then be co-produced through a series of workshops. Stage 2 will recruit people with intellectual disability aged 25 to 74 who are due or overdue for screening into a single-arm trial (n = 48). Trained support people will provide them with the co-produced resource in accessible workshops (intervention) and support them in completing pre-post questions to assess informed decision-making. A subset will participate in qualitative post-intervention interviews including optional body-mapping (n ≈ 20). Screening uptake in the 9-months following the intervention will be measured through data linkage. Family members and support people (n = 48) and healthcare providers (n = 433) will be recruited into single-arm sub-studies. Over a 4-month period they will, respectively, receive the accompanying supporting materials, and the trauma-informed training materials. Both groups will complete pre-post online surveys. A subset of each group (n ≈ 20) will be invited to participate in post-intervention semi-structured interviews. Outcomes and analysis: Our primary outcome is a change in informed decision-making by people with intellectual disability across the domains of knowledge, attitudes, and screening intention. Secondary outcomes include: (i) uptake of screening in the 9-months following the intervention workshops, (ii) changes in health literacy, attitudes and self-efficacy of family members and support people, and (iii) changes in knowledge, attitudes, self-efficacy and preparedness of screening providers. Each participant group will evaluate acceptability, feasibility and usability of the resources. Discussion: If found to be effective and acceptable, the co-produced cervical screening resources and training materials will be made freely available through the ScreenEQUAL website to support national, and potentially international, scale-up.

"I've had constant fears that I'll get cancer": the construction and experience of medical intervention on intersex bodies to reduce cancer risk.

PURPOSE: This paper examines the subjective experience of medical interventions on intersex bodies to reduce cancer risk. METHODS: Twenty-five individuals with intersex variations took part in semi-structured interviews, analysed through thematic discourse analysis. RESULTS: Intersex bodies were positioned as inherently sick and in need of modification, with cancer risk legitimating surgical and hormonal intervention. This resulted in embodied shame, with negative impacts on fertility and sexual wellbeing. However, many participants resisted discourses of bio-pathologisation and embraced intersex status. Some medical interventions, such as HRT, were perceived to have increased the risk of cancer. Absence of informed consent, and lack of information about intersex status and the consequences of medical intervention, was positioned as a human rights violation. This was compounded by ongoing medical mismanagement, including health care professional lack of understanding of intersex variations, and the objectification or stigmatization of intersex people within healthcare. The consequence was non-disclosure of intersex status in health contexts and lack of trust in health care professionals. CONCLUSIONS: The legitimacy of poorly-evidenced cancer risk discourses to justify medical intervention on intersex bodies needs to be challenged. Healthcare practitioners need to be provided with education and training about cultural safety practices for working with intersex people.

"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.

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.

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.

Experiences of Primary Healthcare Workers in Australia towards Women and Girls Living with Female Genital Mutilation/Cutting (FGM/C): A Qualitative Study.

Female genital mutilation/cutting (FGM/C) is a harmful cultural practice with significant health consequences for affected women and girls. Due to migration and human mobility, an increasing number of women with FGM/C are presenting to healthcare facilities of western countries (including Australia) where the practice is non-prevalent. Despite this increase in presentation, the experiences of primary healthcare providers in Australia engaging and caring for women/girls with FGM/C are yet to be explored. The aim of this research was to report on the Australian primary healthcare providers' experiences of caring for women living with FGM/C. A qualitative interpretative phenomenological approach was utilised and convenience sampling was used to recruit 19 participants. Australian primary healthcare providers were engaged in face-to-face or telephone interviews, which were transcribed verbatim and thematically analysed. Three major themes emerged, which were: exploring knowledge of FGM/C and training needs, understanding participants' experience of caring for women living with FGM/C, and mapping the best practice in working with women. The study shows that primary healthcare professionals had basic knowledge of FGM/C with little or no experience with the management, support, and care of affected women in Australia. This impacted their attitude and confidence to promote, protect, and restore the target population's overall FGM/C-related health and wellbeing issues. Hence, this study highlights the importance of primary healthcare practitioners being skilled and well-equipped with information and knowledge to care for girls and women living with FGM/C in Australia.

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.

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.

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.

Evaluating Maybe Later Baby, a Fertility Information Resource for Adolescents and Young Adults Diagnosed with Cancer: A Randomized, Controlled Pilot Study.

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

Transgender Parents: Negotiating "Coming Out" and Gender Affirmation with Children and Co-Parents.

This study investigated how transgender parents negotiate "coming out" and pursuit of gender affirmation (GA) with their children and co-parents. Sixty-six open-ended survey responses and 38 one-on-one interviews conducted with Australian trans parents, aged 24-67 years, were analyzed using thematic analysis. The main themes were: (i) Anticipating their Response: "Coming Out" to co-parents and children; (ii) "Having that talk"-Negotiating disclosure of trans identity with co-parents and children; and (iii) Negotiating Gender Affirmation alongside Parenting. "Coming out" was experienced as both vital and a point of vulnerability, with GA necessitating communication and negotiation alongside parenting. Many participants reported significant anxiety before "coming out" to co-parents and children. Children's age was an influential factor in reaction to changes in parental gender identity, with younger and adult children reportedly being the most receptive. Results are discussed in terms of the reported benefits of pursuing GA for trans parents.

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.

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.

Negotiating mental health amongst transgender parents in Australia.

Background: Many transgender (trans) parents experience challenges related to their mental health, which can affect and impact on their experiences of parenting, however there is scant research on how Australian trans parents contextualize and experience their mental health, the support they receive for it, and impacts within the family context. Aims: The present study aims to address these gaps in the literature, through examining how Australian trans parents contextualize and experience issues around their mental health, and their experience of formal and informal support for their mental health? Methods: This study aimed to explore these experiences, through a qualitative research design using online open-ended survey data and one-on-one interviews, with 66 trans parents, aged 24-67 years old. Data was analyzed using thematic analysis. Results: Many participants reported significant challenges in relation to their mental health: such as depression, anxiety, and suicidal ideation, which reportedly made parenting challenging. However, participants reported that gender affirmation as well as family and social support had a positive impact on their mental health. The majority of participants reported feeling they had to educate their therapist, that they were pigeon-holed by their gender identity or, had concerns about confidentiality. However, some participants expressed positive interactions with therapists, particularly therapists specializing in, or knowledgeable of, trans health. Conclusion: The results reinforced the need for mental health professionals and associated services to be competent in treating trans parents and reiterated the positive impact of family and social support, as well as support for gender affirmation, on the mental health of trans parents and their ability to parent.

"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.

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.

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.