A qualitative study into the use of formal services for dementia by carers from culturally and linguistically diverse (CALD) communities.

BACKGROUND: People with dementia and their family carers need to be able to access formal services in the community to help maintain their wellbeing and independence. While knowing about and navigating one's way through service systems is difficult for most people, it is particularly difficult for people from culturally and linguistically diverse (CALD) communities. This study addresses a lack of literature on the use of formal services for dementia by people from CALD backgrounds by examining the experiences and perceptions of dementia caregiving within four CALD communities - Italian, Chinese, Spanish and Arabic-speaking - in south western Sydney, Australia. METHODS: The study used a qualitative design and the methods included focus groups with family carers and one-to-one interviews with bilingual/bicultural community workers, bilingual general practitioners and geriatricians. A total of 121 family carers participated in 15 focus groups and interviews were held with 60 health professionals. All fieldwork was audiotaped, transcribed and subjected to thematic analysis. RESULTS: People from CALD communities are often unfamiliar with the concept of formal services and there may be strong cultural norms about maintaining care within the family, rather than relying on external services. CALD communities often have limited knowledge of services. There is a preference for services that will allow families to keep their relative at home, for safety as well as cultural reasons, and they are particularly reluctant to use residential care. While there is a preference for ethno-specific or multicultural services, mainstream services also need to ensure they are more flexible in providing culturally appropriate care. Positive outcomes occur when ethno-specific services work in partnership with mainstream programs. Dementia service providers need to develop a trusting relationship with their local CALD communities and promote their services in a way that is understandable and culturally acceptable to members of these communities. CONCLUSIONS: While members of CALD communities may have difficulties accessing formal services, they will use them if they are culturally and linguistically appropriate and can meet their needs. There are a number of ways to improve service provision to CALD communities and the responsibility for this needs to be shared by a range of stakeholders

‘Blindness to the obvious’?: Treatment experiences and feminist approaches to eating disorders

Eating disorders (EDs) are now often approached as biopsychosocial problems, but the social or cultural aspects of the equation are often marginalised in treatment - relegated to mere contributory or facilitating factors. In contrast, feminist and socio-cultural approaches are primarily concerned with the relationship between EDs and the social/ cultural construction of gender. Yet although such approaches emerged directly from the work of feminist therapists, the feminist scholarship has increasingly observed, critiqued and challenged the biomedical model from a scholarly distance. As such, this article draws upon data from 15 semi-structured interviews with women in the UK context who have experience of anorexia and/or bulimia in order to explore a series of interlocking themes concerning the relationship between gender identity and treatment. In engaging the women in debate about the feminist approaches (something which has been absent from previous feminist work), the article explores how gender featured in their own understandings of their problem, and the ways in which it was - or rather wasn’t - addressed in treatment. The article also explores the women’s evaluations of the feminist discourse, and their discussions of how it might be implemented within therapeutic and clinical contexts

(Un)twisted: talking back to media representations of eating disorders

In 2014-15, there were several news reports about a rise in the diagnoses and treatment of eating disorders (EDs), as attributed to the use of image-driven social media. Such coverage can be situated within a long history of concern in which those diagnosed with an ED are constructed as ‘especially vulnerable’ to the power of media images – a subjectivity which is pathologised and devalued precisely through its association with femininity. The most incisive objections to EDs being presented as a response to the ‘weight’ of media representation have come from Abigail Bray (2005) in her work on how anorexia is constructed as a reading as well as an eating disorder. Indeed, there is a whole history of empirical work in Feminist Media Studies and Girlhood Studies which has challenged the pernicious construction of female subjectivity as ‘excessively’ invested in, and ‘damaged’ by, the consumption of mass mediated forms. Yet the media consumption practices of those with experience of an ED have not been subject to similar feminist re-evaluation – an omission which this research seeks to address. In exploring the results of 17 semi-structured interviews with people who have experience of an ED discussing their encounters with media representations of EDs (material that is often co-opted into debates about the ‘toxic’ nature of media culture in this regard), this article seeks to intervene in how such imagined media consumption practices are often defined. In seeking to speak back to historically pathologising constructions, the article seeks to explore the qualitative responses in the context of more ‘every day’ understandings of media engagement, thus working against the gendered othering which has persistently occurred

Being and doing anorexia nervosa: An autoethnography of diagnostic identity and performance of illness

This autoethnography examines my experience of the diagnosis and treatment of anorexia nervosa. Drawing on memory and personal and medical documents relating to inpatient admissions in an adult specialist eating disorder unit, I narrate and analyse my experience in terms of my relationship to the diagnosis of anorexia and the constructions of it I encountered. I show how I came to value an identity based on anorexia and how I learned ways of ‘doing’ the diagnosis in treatment. This involved me valuing medical markers of illness, including signs of poor health, which became crucial to how I performed my diagnosis and retained the diagnostically-informed sense of self that I valued. I suggest that, ultimately, these diagnostic-dynamics, alongside other effects of long-term inpatient treatment such as detachment from ‘normal life’, prolonged my struggles with self-starvation. The insights from this autoethnography shed light on potential iatrogenic impacts of diagnosis and treatment for anorexia

Equity, diversity, and inclusion at the Global Alliance for Genomics and Health

A lack of diversity in genomics for health continues to hinder equitable leadership and access to precision medicine approaches for underrepresented populations. To avoid perpetuating biases within the genomics workforce and genomic data collection practices, equity, diversity, and inclusion (EDI) must be addressed. This paper documents the journey taken by the Global Alliance for Genomics and Health (a genomics-based standard-setting and policy-framing organization) to create a more equitable, diverse, and inclusive environment for its standards and members. Initial steps include the creation of two groups: the Equity, Diversity, and Inclusion Advisory Group and the Regulatory and Ethics Diversity Group. Following a framework that we call "Reflected in our Teams, Reflected in our Standards," both groups address EDI at different stages in their policy development process. [Abstract copyright: © 2023 The Author(s).

A Pathway to Precision Medicine for Aboriginal Australians: A Study Protocol

Published: 21 June 2021(1) Background: Genomic precision medicine (PM) utilises people’s genomic data to inform the delivery of preventive and therapeutic health care. PM has not been well-established for use with people of Aboriginal and Torres Strait Islander ancestry due to the paucity of genomic data from these communities. We report the development of a new protocol using co-design methods to enhance the potential use of PM for Aboriginal Australians. (2) Methods: This iterative qualitative study consists of five main phases. Phase-I will ensure appropriate governance of the project and establishment of a Project Advisory Committee. Following an initial consultation with the Aboriginal community, Phase-II will invite community members to participate in co-design workshops. In Phase-III, the Chief Investigators will participate in co-design workshops and document generated ideas. The notes shall be analysed thematically in Phase-IV with Aboriginal community representatives, and the summary will be disseminated to the communities. In Phase-V, we will evaluate the co-design process and adapt our protocol for the use in partnership with other communities. (3) Discussion: This study protocol represents a crucial first step to ensure that PM research is relevant and acceptable to Aboriginal Australians. Without fair access to PM, the gap in health outcome between Aboriginal and non-Aboriginal Australians will continue to widen.Yeu-Yao Cheng, Jack Nunn, John Skinner, Boe Rambaldini, Tiffany Boughtwood, Tom Calma, Alex Brown, Cliff Meldrum, Marcel E. Dinger, Jennifer A. Byrne, Debbie McCowen, Jayden Potter, Kerry Faires, Sandra Cooper and Kylie Gwynn

GA4GH: International policies and standards for data sharing across genomic research and healthcare.

The Global Alliance for Genomics and Health (GA4GH) aims to accelerate biomedical advances by enabling the responsible sharing of clinical and genomic data through both harmonized data aggregation and federated approaches. The decreasing cost of genomic sequencing (along with other genome-wide molecular assays) and increasing evidence of its clinical utility will soon drive the generation of sequence data from tens of millions of humans, with increasing levels of diversity. In this perspective, we present the GA4GH strategies for addressing the major challenges of this data revolution. We describe the GA4GH organization, which is fueled by the development efforts of eight Work Streams and informed by the needs of 24 Driver Projects and other key stakeholders. We present the GA4GH suite of secure, interoperable technical standards and policy frameworks and review the current status of standards, their relevance to key domains of research and clinical care, and future plans of GA4GH. Broad international participation in building, adopting, and deploying GA4GH standards and frameworks will catalyze an unprecedented effort in data sharing that will be critical to advancing genomic medicine and ensuring that all populations can access its benefits

Dementia information for culturally and linguistically diverse communities: Sources, access and considerations for effective practice

Providing information about dementia has been shown to produce immense benefits for people living with dementia and their carers. The dementia information needs of culturally and linguistically diverse (CALD) families have not been comprehensively investigated. Addressing this research gap, the current study examines the perspectives of a range of stakeholders CALD family caregivers (Arabic, Chinese, Italian and Spanish speaking), bilingual and bicultural workers, bilingual general practitioners and geriatricians - about dementia-related information. The study focussed on sources of information, issues of access and considerations for improving information provision. The main findings that are relevant for improving policy and practice are: the need for a more strategic and coordinated approach to dissemination structures and processes, a greater emphasis on supporting and enhancing the interpersonal aspects of information provision, the need for a greater range of information for CALD communities and the need to ensure information resources and processes reflect the circumstances and needs of these communities. © 2012 La Trobe University