'You are at their mercy' : disclosure and trust in LGBTQI+ cancer care

Background Lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI+) populations represent an ‘ignored epidemic’ and a ‘growing, medically underserved population’ in cancer care, with preliminary evidence that these communities experience disproportionate cancer burdens and unique psychosocial challenges (e.g. lower satisfaction with care, greater cancer-related distress). Methods The Out with Cancer study is the first international study to explore the experiences of LGBTQI+ people diagnosed with cancer, using a mixed-methods approach (survey, semi-structured and photo-elicitation interviews). This presentation focuses on disclosure and trust in cancer care, from the perspective of LGBTQI+ people with cancer and healthcare professionals. Results LGBTQI+ participants (to date survey n=342; interviews n=105; data collection is ongoing) often reported careful control around disclosure of their sexual and gender identities or intersex variations in cancer care, in part, due to embarrassment, discomfort, and fear of negative reactions. Previous negative healthcare experiences contributed to distrust in cancer care, reluctance to disclose LGBTQI+ status and fears of inequitable treatment. Some participants reported explicit discriminations in cancer care, however, micro-aggressions (e.g. cis-heteronormative assumptions) and systemic absences of services and information tailored to the needs of LGBTQI+ people with cancer were more commonly reported. Healthcare professionals reported lacking confidence working with LGBTQI+ cancer patients, attributed to insufficient knowledge of the needs of these patients, uncertainty of correct terminology, and feeling embarrassed and uncomfortable discussing topics such as sexual needs. Furthermore, healthcare professionals reported lacking information and resources to guide the provision of quality clinical care and decision making with LGBTQI+ patients (e.g. such as the impact of hormone therapies on cancer treatment). Conclusions These findings highlight the need to develop resources for LGBTQI+ people with cancer and healthcare professionals, which facilitate access to information and care that is culturally informed and relevant to the needs of LGBTQI+ communities

Supporting ultra poor people with rehabilitation and therapy among families of children with cerebral palsy in rural Bangladesh (SUPPORT CP) : Protocol of a randomised controlled trial

Introduction Poverty is a key contributor to delayed diagnosis and limited access to early intervention and rehabilitation for children with cerebral palsy (CP) in rural Bangladesh. 97% of families of children with CP live below the poverty line in Bangladesh. Therefore, in low-and middle-income countries (LMICs), efforts to improve outcomes for children with CP (including health-related quality of life, motor function, communication, and nutritional attainments) should also include measures to improve family economic and social capital. We propose a randomised controlled trial (RCT) to evaluate the effectiveness of an integrated microfinance/livelihood and community-based rehabilitation (IMCBR) program for ultra-poor families of children with CP in rural Bangladesh. Material and methods This will be a cluster RCT comparing three arms: (a) integrated microfinance/livelihood and community-based rehabilitation (IMCBR); (b) community-based rehabilitation (CBR) alone; and (c) care-as-usual (i.e. no intervention). Seven clusters will be recruited within each arm. Each cluster will consist of 10 child-caregiver dyads totalling 21 clusters with 210 dyads. Parents recruited in the IMCBR arm will take part in a microfinance/livelihood program and Parent Training Module (PTM), their children with CP will take part in a Goal Directed Training (GDT) program. The programs will be facilitated by specially trained Community Rehabilitation Officers. The CBR arm includes the same PTM and GDT interventions excluding the microfinance/livelihood program. The care-as-usual arm will be provided with information about early intervention and rehabilitation. The assessors will be blinded to group allocation. The duration of the intervention will be 12 months; outcomes will be measured at baseline, 6 months, 12 months, and 18 months. Conclusion This will be the first RCT of an integrated microfinance/livelihood and CBR program for children with CP in LMIC settings. Evidence from the study could transform approaches to improving wellbeing of children with CP and their ultra-poor families

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

"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

Cerebral palsy in the Middle East : epidemiology, management, and quality of life

Cerebral palsy (CP), a physical disability affecting posture and movement, is the leading cause of childhood physical disability and affects approximately 2 to 2.5 children per 1,000 births equating to more than 17 million people worldwide. The type and severity of motor impairment caused by CP is different for each child and is frequently accompanied by comorbidities such as chronic pain, intellectual disability, and epilepsy. The understanding and responses to CP vary substantially in the Middle East, due largely to the diverse language, cultural, religious, geographic, and economic conditions in the region. A growing body of epidemiological research informs practice in some regions; however, other regions lack data to guide service planning, delivery, and policy. Notably, low- and middle-income economies account for more than half of Middle Eastern countries and typically report a higher prevalence and severity of CP. Data from Middle Eastern countries is limited, and public health infrastructure in these settings is often poorest. Improved understanding and multidisciplinary collaboration is required to extend knowledge and improve practice including in the areas of early diagnosis and intervention in order to improve the lives of children with CP in the Middle East. In this chapter, we discuss epidemiological factors including the prevalence, clinical characteristics, causes, and risk factors of CP in the Middle East. We review current understanding of the health and well-being, including quality of life of children with CP, and highlight successful methods for the management including early intervention and rehabilitation of children with CP. Finally, we discuss the legislative and political landscapes that impact the lives of children with CP in the Middle East

Depression, anxiety and stress among caregivers of adolescents with cerebral palsy in rural Bangladesh

Purpose: Prior studies indicate high risk of mental health problems among caregivers of adolescents with cerebral palsy although limited consideration is given to caregivers in low- and middle-income countries. This study aimed to compare the burden of depression, anxiety and stress among caregivers of adolescents with cerebral palsy to caregivers of adolescents without disability in rural Bangladesh; and to identify factors unique to low- and middle-income countries that predict caregiver’s mental health. Methods: Observational study comparing caregivers of adolescents with cerebral palsy identified through the Bangladesh Cerebral Palsy Register and caregivers of adolescents without disability from neighboring dwellings. Caregiver mental health was assessed using the Depression, Anxiety and Stress Scale-21, adolescent mental health using the Strengths and Difficulties Questionnaire and adolescent health-related quality of life using Kidscreen-27. Hierarchical multivariable regression analysis was performed. Results: Participants were 154 caregivers of adolescents with cerebral palsy and 173 caregivers of adolescents without disability, matched on adolescent age and sex. Caregivers of adolescents with cerebral palsy reported significantly higher risk of depression and stress than caregivers of adolescents without disability (Effect Size 0.1 to 0.2, p < 0.05) although no difference on anxiety. Caregiver age, adolescent mental health, household overcrowding and adolescent hearing impairment were significant predictors of depression, anxiety and/or stress (0.1 to 2.2, p < 0.05). Conclusions: Caregivers of adolescents with cerebral palsy in rural Bangladesh are at high risk of depression and stress. Initiatives to improve caregiver mental health are required; we recommend initiatives address adolescent mental health problems and include poverty reduction measures to improve social and economic capital. Improved understanding of the factors predicting caregiver depression, anxiety and stress unique to low and middle-income countries are necessary to guide policies and public health infrastructure development