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

[In Press] Mapping the abject : women's embodied experiences of premenstrual body dissatisfaction through body-mapping

Women’s body shame and body dissatisfaction increase in the premenstrual phase of the cycle, associated with premenstrual distress. However, the meaning and consequences of premenstrual body dissatisfaction remain underexplored. The aim of this study was to explore how women who report premenstrual body dissatisfaction construct and experience their bodies, using qualitative arts-based methods. Four hundred and sixty women completed online open-ended survey questions and 16 women took part in body-mapping and an interview. Thematic analysis identified three major themes: construction of the premenstrual body as abject, manifested by positioning of the body and self as fat, leaking and dirty; self-policing and self-regulation through increased scrutinising and concealment of the premenstrual body; and resistance of cultural constructions of idealised femininity. These findings emphasise the need to acknowledge changes in body dissatisfaction across the menstrual cycle, and the implication for women’s feelings about the self. Internalisation of negative constructions of the female body plays a role in women’s experience of premenstrual change and distress. There is a need for further research to examine the role of body management behaviours in premenstrual body dissatisfaction and distress

Exploring consumer perspective of patient-reported measures (PRMs) used in primary health care

Background: In Australia, there is currently no consensus as to what constitutes high-quality primary health care (PHC). The Quality Equity and Systems Transformation in Primary Health Care (QUEST PHC) project is developing a tool for measuring high-quality general practice to inform quality improvement and PHC funding reforms in Australia. Patient-reported measures (PRMs) of outcomes and experience are an important aspect of identifying high-quality PHC. Aim: This study aimed to explore PHC consumer perspectives on a selection of PRMs for inclusion in the QUEST PHC Tool and their value and potential use in Australian PHC. Method: Patient-reported measures (PRMs) that would be potentially suitable for use in an Australian general practice setting were identified through a systematic review of PRMs used in PHC in the last decade. Focus groups were conducted via Zoom to investigate consumers’ views on the PRMs identified, and their perspectives on what constitutes high-quality general practice, and the value of PRMs in general practice. Findings: Two online focus groups were conducted with 16 participants in March 2022. Thematic analysis indicated that consumers’ perspectives of high-quality PHC included patient-centred care, timely appointments and up-to-date advice and information from healthcare providers. They valued PRMs that are easy to comprehend, non-judgemental and efficient, and they highlighted the importance of ensuring that PRMs are inclusive of all people from diverse age, gender, cultural and linguistic backgrounds. Participants recognised the value of PRMs in general practice but emphasised the need for consumer input in the design of PRMs to realise that value in today’s multicultural Australia. Implications: Understanding patient views and perspectives will inform the effective use of PRMs in PHC. Consumers’ input should be sought in the design of PRMs or modification of existing PRMs for use in the Australian PHC context and for the development of the QUEST PHC Tool

Achieving consensus on indicators and measures of high quality in Australian general practice using a Delphi survey

Background: High quality primary health care (PHC) is key to containing spiralling health costs and providing equitable community-based care. Currently Australia is amongst OECD countries with the highest proportion of PHC funding as fee-for-service payments (90%), and there is no agreement on what constitutes high quality PHC to guide alternative funding models. In partnership with WentWest, the Western Sydney University ‘Quality Equity and Systems Transformation in Primary Health Care (QUEST PHC)’ team developed a suite of 79 indicators and their corresponding 128 measures of high quality general practice in 2019–2020. Aim/Objectives: To establish consensus with general practice and primary health networks (PHNs) on the relevance and feasibility of the QUEST PHC suite of indicators and measures for an Australian general practice context. Methods: Partnering with eight PHNs across four states, general practitioners, practice staff and PHN staff were recruited to participate in three rounds of an online Delphi survey to rate each indicator and measure on a Likert scale for relevance and feasibility. Participants were also asked to provide comments, suggestions and views regarding the implementation of a quality indicator tool. Agreement of ≥70% in both relevance and feasibility was required for each indicator and measure to reach consensus. Ratings were statistically analysed for response rates, level of agreement, means, standard deviations, medians, ranges and group rankings. Qualitative responses were thematically analysed. Results: Seventy-eight indicators and 127 measures achieved consensus. Thematic analysis indicated that although primary health care professionals feel that high-quality indicators and measures are relevant and feasible, they face numerous challengesin collecting these data including accessibility of appropriate assessment tools, patient compliance, time constraint and requirement of technological skills. Implications: Findings of the Delphi survey will contribute to the design of an assessment tool of high quality care in general practice that would enable future primary health care reforms in Australia

Assessing the quality of patient-reported measures (PRMs) used in primary health care : development of a PRM compendium

Background: Patient-reported measures (PRMs) of outcomes and experience are an important aspect of providing high quality primary health care (PHC). PRMs provide insight to healthcare professionals, practices and primary health networks about patient experience, needs and expectations, areas of importance to patients, as well as highlight areas of achievement and gaps. There are numerous PRMs available. However, the quality of these PRMs in the context of development and validation is largely unknown and many are not readily accessible. Aim/Objectives: As part of a wider project, Quality Equity and Systems Transformation in Primary Health Care (QUEST PHC), to develop a tool for measuring high quality in Australian general practice, we aimed to assess the quality of PRMs used in PHC to provide information about their purpose, quality and accessibility. Methods: A systematic review of PRMs used in PHC in Australia and overseas within the last 10 years was conducted between July and August 2021. Of the 519 papers identified, 58 were included after screening, and information about the PRMs was extracted by three reviewers. Each PRM was assessed by two reviewers for relevance to Australian PHC. Ninety-two PRMs were finally included for critical appraisal. Development and validation papers were sourced and each PRM was assessed for quality of development, content validity and validation based on a modified COSMIN framework by five reviewers. Results: A compendium of 92 PRMs has been developed consisting of a description of each PRM, critical appraisal of its quality, a repository of the PRMs freely available and the weblinks of PRMs that require permission for access. Implications: This compendium adds to the knowledge base of PRMs used in PHC. It has the potential to inform health care professionals’ choice of PRMs to use, and enhance patient experience and outcomes through quality improvement

Trans women's responses to sexual violence : vigilance, resilience, and need for support

Despite experiencing high rates of sexual violence, there is limited research that explores coping and support needs among trans women of color and those from migrant backgrounds. This article examines the impact of sexual violence, as well as responses and support needs in relation to sexual violence, among 31 trans women of color, aged between 18–54 years, living in Australia. Women were recruited using purposive and snowball sampling, local LGBTQI+networks, and social media. Study advertisements invited participation from people 18 years and older, who identifed as a “trans woman of color” or “trans woman from a non-English speaking background,” to take part in a study about their lives as trans women of color and experiences of sexual violence. In-depth interviews and photovoice took place between September 2018 and September 2019. Findings were analyzed through thematic analysis, drawing on intersectionality theory. Sexual violence was reported to be associated with fear, anxiety, and depression, and, for a minority of women, self-blame. While women reported hypervigilance and avoiding going out in public as measures to anticipate and protect themselves from sexual violence, they also demonstrated agency and resilience. This included putting time and effort into appearing as a cisgender woman, naming violence, seeking support, rejecting self-blame, and engaging in self-care practices to facilitate healing. Trans women highlighted the need for multi-faceted sexual violence prevention activities to encourage education, empowerment and cultural change across the general population and support services, in order to promote respect for gender, sexuality and cultural diversity

Violating bodily boundaries : sexual violence experiences of trans women

Sexual violence is a significant human rights and public health issue, with negative consequences for health and wellbeing (World Health Organization, 2013). International research indicates that trans people experience a significantly increased risk of sexual violence, which includes both sexual harassment and sexual assault, compared to the cisgender population (Blondeel et al., 2018; James et al., 2016). For example, a recent large-scale survey of trans and gender diverse Australians reported that 53.2% had experienced sexual assault compared to 13.3% of the broader Australian population (Callander et al., 2019). Similar rates have been reported in US-based studies (Stotzer, 2009). Trans individuals also experience high rates of verbal abuse and sexual harassment, which has been directly linked to their gender expression (Lombardi, Wilchins, Priesing, & Malouf, 2001; Ussher et al., 2022 a,b). In a recent Australian study, 72% of trans women reported verbal harassment and 79.8% sexual harassment in the last 12 months (Kerr, Fisher, & Jones, 2019), perceived to be associated with gender expression by the majority of trans women surveyed. The aim of this chapter is to examine experiences and consequences of sexual violence for trans women, drawing on existing literature, and the findings of the Crossing the Line Study, a mixed method project based at Western Sydney University, funded by Australia’s National Research Organisation for Women’s Safety (ANROWS)

"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 diferences in psychosocial outcomes and carer experiences by gender, sexuality, age, carer relationship and carer/patient LGBTQI status. Refexive 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 signifcantly positively correlated with discrimination in cancer care, health impact, fnancial 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 identifed 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 refective practices. This will facilitate trust and patient and carer sexuality and gender identity disclosure, with positive consequences for wellbeing and satisfaction with cancer care