Focused Attention on Positive Aspects of Dementia Care in Culturally and Linguistically Diverse Communities: Qualitative Insights from Australia.

OBJECTIVES: Dementia care scholarship focuses on care challenges and less on positive aspects of care, especially among culturally and linguistically diverse (CALD) carers outside the United States. This article investigates positive aspects of dementia care across eight CALD groups in Australia. METHODS: We analyzed interviews of 112 family carers using a four-domain framework covering: a sense of personal growth, feelings of mutuality, increases in family cohesion, and a sense of personal accomplishment. RESULTS: Positive associations with care are derived from past relationships, feelings of mutual obligation, valuing changed relationships and enjoying spending time with the person with dementia. Positive aspects of care were not associated with increased family cohesion except in Vietnamese and Arab families; neither was use of ethno-specific residential aged care, except for Greek and Italian families. Religion and spirituality as a coping and comforting mechanism was inconsistently expressed. CONCLUSIONS: The study reveals the multi-dimensional nature of care, what resonates, and diverges across CALD populations. Knowing which parts of the framework apply and which do not is useful for interventions seeking to enhance positive aspects of care. CLINICAL IMPLICATIONS: Migrant populations are varied and dynamic, and practitioners should be mindful of differences within and between ethnic minority groups.

General practitioner knowledge and practice in relation to unintended pregnancy in the Grampians region of Victoria, Australia.

INTRODUCTION: Abortion has been legal in the Australian state of Victoria since 2008 and medical termination of pregnancy (MTOP) available since 2012. While these developments were expected to improve Victorian rural women's access to abortion, this has not been borne out in practice. General practitioners (GPs), particularly in rural areas, are women's first point of contact when faced with an unintended pregnancy. The objective of this study was to understand rural GPs' knowledge and practice in relation to unintended pregnancy and referral for abortion, using the Grampians region of Victoria as a case study. Parts of this region, like other rural and regional areas, experience teenage pregnancy rates double the national average and more than four times that of major cities, and access to abortion services is known to be limited. Findings from the study will inform rural health service development to improve rural women's access to abortion. METHODS: This article reports on the findings from a mixed methods study which explored GP knowledge, understanding and practice in relation to unintended pregnancy services in seven local government areas in the Grampians. Data were collected between April and August 2017. GPs from all practices in this region were invited to participate. A total of 84 GPs were approached, 23 (27%) completed the survey and, of these, five also took part in a semi-structured telephone interview. The quantitative survey data were analysed descriptively while the open-ended survey responses and qualitative interviews were analysed thematically. RESULTS: Of the GPs surveyed, 38% indicated that they 'refer to a colleague due to a conscientious objection' when women present with an unintended pregnancy. No GP always discussed telehealth medical abortion with women and only 27% said that they 'always' discussed medical abortion with women. A range of views were expressed about the adequacy and location of services, with the majority indicating services in the region were limited or inadequate. Interviews with GPs who had conscientious objections to abortion indicated that 'conscientious objection' occurred in different forms and included a range of behaviours. Rural GPs who were interested in becoming MTOP providers faced barriers such as lack of access to timely ultrasounds and surgical backup. CONCLUSION: The results indicate high levels of conscientious objection and wide variation in knowledge of services. In addition, the provision of tele-abortion and medical abortion is extremely limited in this region, even while these are considered ideal ways to address rural access to abortion. It is likely the promise of tele-abortion is far from fulfilled in the Grampians region and possibly in other rural areas in Victoria. There is a need to improve GPs' knowledge of available services and adherence to legal and professional obligations, and there are clear opportunities to achieve this, with all interview participants expressing strong support for the prevention of unintended pregnancy, and many highlighting the need for good support for women up until the point of termination.

The experience of structural burden for culturally and linguistically diverse family carers of people living with dementia in Australia.

Evidence suggests that family carers of culturally and linguistically diverse (CALD) people living with dementia experience higher stress and unmet need than the general Australian population. These disparities are often framed as the result of CALD communities failing to seek formal support. Challenging this, we draw on the concept of 'structural burden' to explore how the complexity of health and aged systems contribute to the burden that CALD carers experience. We conducted semi-structured interviews with 104 family carers for CALD people with dementia in Australia, followed by thematic analysis of transcripts. Additional to structural burdens encountered by the general older population, CALD carers faced challenges understanding Australia's Anglo-centric aged care system, locating culturally appropriate care and were required to translate the languages and operations of health and aged care systems into terms their family members understood. This burden was mitigated by the presence of ethno-specific organisations and other navigation support. Australia's aged care system has moved towards centralised governance and consumer-directed care provision. This system involves a confusing array of different programmes and levels, bureaucratic applications and long waiting times. Carers' encounters with these systems demonstrates how some CALD people are being left behind by the current aged care system. While ethno-specific services can reduce this burden, not all CALD groups are represented. Consequently, improving access to dementia care among CALD populations requires entry point and navigation support that is culturally appropriate and linguistically accessible.

Video-interpreting for cognitive assessments: An intervention study and micro-costing analysis.

INTRODUCTION: Evidence in the literature demonstrates the reliability of cognitive screening assessments using video technology in English-speaking older populations. However, this has not been tested in older culturally and linguistically diverse (CALD) populations who require an interpreter, and what the associated costs would be. The aim was to determine if the Rowland Universal Dementia Assessment Scale (RUDAS) and the Geriatric Depression Scale (GDS) could be reliably administered over video-interpreting methods compared with face-to-face interpreting. In addition, the study aims to compare the costs of video-interpreting with the costs of face-to-face interpreting. METHODS: We compared similarity of the RUDAS and GDS scores when administered face-to-face and via video-interpreting. The similarity of scores between methods was analysed using paired t-tests and Bland-Altman plots. A costing analysis was done using a micro-costing approach to estimate the costs of video-interpreting compared with face-to-face, extrapolated to a national level. RESULTS: Analysis found no significant differences in the mean assessment scores between video-interpreting and face-to-face (RUDAS mean difference: -0.36; 95% confidence interval (CI): -1.09, 0.38, GDS mean difference: 0.22; 95% CI: -0.38, 0.83). Bland-Altman plots demonstrated that 71% of RUDAS scores and 82% of GDS scores were within the maximum allowed difference of ±2 units. Costing analysis showed a A$7 saving per assessment when using video-interpreting compared with face-to-face, with a total national saving of A$247,350. DISCUSSION: Video-interpreting was found to be as reliable as face-to-face interpreting for both RUDAS and GDS assessments. Cost analysis indicates that video-interpreting is cheaper than face-to-face interpreting.

Boundary Crossers: How Providers Facilitate Ethnic Minority Families' Access to Dementia Services.

OBJECTIVES: Providers who work closely with ethnic minority people with dementia and their families are pivotal in helping them access services. However, few studies have examined how these providers actually do this work. Using the concept of "boundary crossers," this article investigates the strategies applied by these providers to facilitate access to dementia services for ethnic minority people with dementia and their families. METHODS: Between 2017 and 2020, in-depth video-recorded interviews were conducted with 27 health, aged care, and community service providers working with ethnic minority people living with dementia across Australia. Interviews were conducted in one of seven languages and/or in English, then translated and transcribed verbatim into English. The data were analyzed thematically. RESULTS: Family and community stigma associated with dementia and extra-familial care were significant barriers to families engaging with services. To overcome these barriers, participants worked at the boundaries of culture and dementia, community and systems, strategically using English and other vernaculars, clinical and cultural terminology, building trust and rapport, and assisting with service navigation to improve access. Concurrently, they were cognizant of familial boundaries and were careful to provide services that were culturally appropriate without supplanting the families' role. DISCUSSION: In negotiating cultural, social, and professional boundaries, providers undertake multidimensional and complex work that involves education, advocacy, negotiation, navigation, creativity, and emotional engagement. This work is largely undervalued but offers a model of care that facilitates social and community development as well as service integration across health, aged care, and social services.

Including ethnic minorities in dementia research: Recommendations from a scoping review.

Introduction: Ethnicity influences dementia etiology, prognosis, and treatment, while culture shapes help-seeking and care. Despite increasing population diversity in high-income settlement countries, ethnic minorities remain underrepresented in dementia research. We investigated approaches to enhance the recruitment, and consistent collection and analysis of variables relevant to, ethnic minorities in dementia studies to make recommendations for consistent practice in dementia research. Methods: We did a scoping review, searching Embase, PsycINFO, Medline, CENTRAL, and CINAHL between January 1, 2010 and January 7, 2020. Dementia clinical and cohort studies that actively recruited ethnic minorities in high-income countries were included. A steering group of experts developed criteria through which high-quality studies were identified. Results: Sixty-six articles were retrieved (51 observational; 15 experimental). Use of interpreters and translators (n = 17) was the most common method to facilitate participant recruitment. Race and ethnicity (n = 59) were the most common variables collected, followed by information on native language (n = 14), country of birth (n = 9), and length of time in country of settlement (n = 8). Thirty-three studies translated or used a culturally validated instrument. Twenty-three articles conducted subgroup analyses based on ethnicity. Six high-quality studies facilitated inclusion through community engagement, collected information on multiple aspects of ethnic diversity, and adjusted/substratified to analyze the impact of ethnicity on dementia. Discussion: We make recommendations for consistent recruitment, collection, and reporting of variables relating to ethnic and cultural diversity in dementia research.

"The mind may go, but the heart knows": Emotional care by ethnic minority carers of people living with dementia.

Drawing on the sociology of emotions, this article investigates the socially and culturally mediated nature of emotions and emotional care within 93 ethnic minority carers' narratives of dementia care. Adding to the cross-cultural literatures on the sociology of emotions and dementia care respectively, our analysis showed that 'signals' of dementia to family carers were often emotional outbursts of anger by the person with dementia. These displays, in turn, created conflict, and aroused emotions such as shame, anger, and depression among carers. To mitigate these tendencies, carers enacted emotional management, which centered on reducing the gravity of negative emotions felt by the person with dementia, and affording them the social space to maintain a positive disposition. To create this positive emotional space, carers deployed different strategies. Some mobilized medical discourses to diffuse the emotional and moral significance of their relative's behavior and enable emotional distantiation. Others conceived of people with dementia as 'childlike' and requiring their protection from emotional negativity. Although, such efforts work took a toll on carers' emotional energies, it was considered enabling, therapeutic, and integral to care. Such emotional work departs from academic and advocacy efforts that see such behavior as patronizing and infantilizing, and underscores the need for more nuanced discussion around emotions and dementia care in ethnic minority families.

Assessing knowledge of human papillomavirus and collecting data on sexual behavior: computer assisted telephone versus face to face interviews.

BACKGROUND: Education campaigns seeking to raise awareness of human papillomavirus (HPV) and promoting HPV vaccination depend on accurate surveys of public awareness and knowledge of HPV and related sexual behavior. However, the most recent population-based studies have relied largely on computer-assisted telephone interviews (CATI) as opposed to face to face interviews (FTFI). It is currently unknown how these survey modes differ, and in particular whether they attract similar demographics and therefore lead to similar overall findings. METHODS: A comprehensive survey of HPV awareness and knowledge, including sexual behavior, was conducted among 3,045 Singaporean men and women, half of whom participated via CATI, the other half via FTFI. RESULTS: Overall levels of awareness and knowledge of HPV differed between CATI and FTFI, attributable in part to demographic variations between these survey modes. Although disclosure of sexual behavior was greater when using CATI, few differences between survey modes were found in the actual information disclosed. CONCLUSION: Although CATI is a cheaper, faster alternative to FTFI and people appear more willing to provide information about sexual behavior when surveyed using CATI, thorough assessments of HPV awareness and knowledge depend on multiple survey modes.

Singaporean men's knowledge of cervical cancer and human papillomavirus (HPV) and their attitudes towards HPV vaccination.

Little is known of men's knowledge of cervical cancer and its links with human papillomavirus (HPV), or of their attitudes and beliefs about HPV vaccination. This is despite men's sexual behaviour contributing to HPV transmission and their potential role in deciding whether their children are vaccinated against HPV. To address this, a comprehensive survey was conducted in Singapore where plans are underway for an HPV vaccination program. A representative sample of 930 Singaporean men was found to have moderate knowledge of cervical cancer but poor knowledge and awareness of HPV. Although these men showed strong support for HPV vaccination, overall findings highlight the importance of including men in education campaigns that aim to decrease the incidence of cervical and other HPV-related cancers and to increase the uptake of HPV vaccination.

Singaporean women's knowledge of human papillomavirus (HPV) and attitudes toward HPV vaccination.

With a vaccination program currently planned to protect Singaporean women from human papillomavirus, a need arises for assessing Singaporean women's knowledge of human papillomavirus and attitudes toward human papillomavirus vaccination to identify barriers to a successful program and to help inform health education campaigns. A representative sample of 2,145 women aged between 18 and 49 years were randomly selected from households throughout Singapore and interviewed with a similar questionnaire to that used in a recent study of Australian women. Although Singaporean women's knowledge of human papillomavirus was poor, with only 20% having heard of it, attitudes toward human papillomavirus vaccination were generally positive. The most trusted sources of information about human papillomavirus and vaccination were gynecologists and general practitioners. Based on our findings, an urgent need exists in Singapore for accurate and accessible information about human papillomavirus and the benefits of vaccination.