Strength together: examining risk and protective factors associated with dementia and cognitive impairment in Aboriginal and Torres Strait Islander peoples through harmonisation of landmark studies.

BACKGROUND: Rates of dementia for Aboriginal and Torres Strait Islander peoples are three to five times greater compared to non-Indigenous Australians, with earlier age of onset. However, the risk and protective factors that drive these higher rates vary across existing cohort studies, with minimal findings on the role of vascular risk factors beyond stroke. Harmonisation of data across studies may offer greater insights through enhanced diversity and strengthened statistical capabilities. This study aims to combine three landmark cohort studies of Aboriginal and Torres Strait Islander participants to better understand the determinants of cognitive health and dementia. METHODS/DESIGN: Three cohort studies - the Kimberley Healthy Adults Project (KHAP, N = 363), Koori Growing Old Well Study (KGOWS, N = 336) and Torres Strait Dementia Prevalence Study (TSDPS, N = 274) - share a similar research methodology with demographic, medical history, psychosocial factors, cognitive tests and consensus clinical diagnoses of cognitive impairment and dementia. Associations between risk and protective factors of interest and the presence of dementia and/or cognitive impairment diagnoses will be evaluated by univariable and multivariable logistic regression in a harmonised cross-sectional cohort of 898 participants. Factors associated with incident dementia and/or cognitive impairment will be assessed in a subset of KHAP (n = 189) and KGOWS participants (n = 165) who were available in longitudinal follow-up, after exclusion of those with baseline dementia or cognitive impairment. Analyses in relation to outcome measure of death or dementia will be conducted to account for the competing risk of death. Logistic regression will be used to evaluate the association between the individual components of the 16-component Kimberley Indigenous Cognitive Assessment (KICA) tool and the presence of dementia and cognitive impairment determined by independent consensus diagnoses. Multivariable binary logistic regression will be used to adjust for the effect of confounding variables. Results will be reported as odds ratios (OR) with 95% confidence intervals (95% CI). DISCUSSION: Greater understanding of risk and protective factors of dementia and cognitive impairment relevant to Aboriginal and Torres Strait Islander peoples may improve approaches across the life course to delay cognitive decline and reduce dementia risk.

Medications and cognitive risk in Aboriginal primary care: a cross-sectional study.

BACKGROUND: Aboriginal and Torres Strait Islander people are ageing with high rates of comorbidity, yet little is known about suboptimal prescribing in this population. AIM: The prevalence of potentially suboptimal prescribing and associated risk factors were investigated among older patients attending primary care through Aboriginal Community Controlled Health Services (ACCHSs). METHODS: Medical records of 420 systematically selected patients aged ≥50 years attending urban, rural and remote health services were audited. Polypharmacy (≥ 5 prescribed medications), potentially inappropriate medications (PIMs) as per Beers Criteria and anticholinergic burden (ACB) were estimated and associated risk factors were explored with logistic regression. RESULTS: The prevalence of polypharmacy, PIMs and ACB score ≥3 was 43%, 18% and 12% respectively. In multivariable logistic regression analyses, polypharmacy was less likely in rural (odds ratio (OR) = 0.43, 95% confidence interval (CI) = 0.24-0.77) compared to urban patients, and more likely in those with heart disease (OR = 2.62, 95% CI = 1.62-4.25), atrial fibrillation (OR = 4.25, 95% CI = 1.08-16.81), hypertension (OR = 2.14, 95% CI = 1.34-3.44), diabetes (OR = 2.72, 95% CI = 1.69-4.39) or depression (OR = 1.91, 95% CI = 1.19-3.06). PIMs were more frequent in females (OR = 1.88, 95% CI = 1.03-3.42) and less frequent in rural (OR = 0.41, 95% CI = 0.19-0.85) and remote (OR = 0.58, 95% CI = 0.29-1.18) patients. Factors associated with PIMs were kidney disease (OR = 2.60, 95% CI = 1.37-4.92), urinary incontinence (OR = 3.00, 95% CI = 1.02-8.83), depression (OR = 2.67, 95% CI = 1.50-4.77), heavy alcohol use (OR = 2.83, 95% CI = 1.39-5.75) and subjective cognitive concerns (OR = 2.69, 95% CI = 1.31-5.52). High ACB was less common in rural (OR = 0.10, 95% CI = 0.03-0.34) and remote (OR = 0.51, 95% CI = 0.25-1.04) patients and more common in those with kidney disease (OR = 3.07, 95% CI = 1.50-6.30) or depression (OR = 3.32, 95% CI = 1.70-6.47). CONCLUSION: Associations between potentially suboptimal prescribing and depression or cognitive concerns highlight the importance of considering medication review and deprescribing for these patients.

Let's CHAT (community health approaches to) dementia in Aboriginal and Torres Strait Islander communities: protocol for a stepped wedge cluster randomised controlled trial.

BACKGROUND: Documented rates of dementia and cognitive impairment not dementia (CIND) in older Aboriginal and Torres Strait Islander Peoples is 3-5 times higher than the rest of the population, and current evidence suggests this condition is under-diagnosed and under-managed in a clinical primary care setting. This study aims to implement and evaluate a culturally responsive best practice model of care to optimise the detection and management of people with cognitive impairment and/or dementia, and to improve the quality of life of carers and older Aboriginal and Torres Islander Peoples with cognitive impairment. METHODS/DESIGN: The prospective study will use a stepped-wedge cluster randomised controlled trial design working with 12 Aboriginal Community Controlled Health Services (ACCHSs) across four states of Australia. Utilising a co-design approach, health system adaptations will be implemented including (i) development of a best practice guide for cognitive impairment and dementia in Aboriginal and Torres Strait Islander communities (ii) education programs for health professionals supported by local champions and (iii) development of decision support systems for local medical software. In addition, the study will utilise a knowledge translation framework, the Integrated Promoting Action on Research Implementation in Health Services (iPARIHS) Framework, to promote long-term sustainable practice change. Process evaluation will also be undertaken to measure the quality, fidelity and contextual influences on the outcomes of the implementation. The primary outcome measures will be rates of documentation of dementia and CIND, and evidence of improved management of dementia and CIND among older Indigenous peoples attending Aboriginal and Torres Strait Islander primary care services through health system changes. The secondary outcomes will be improvements to the quality of life of older Indigenous peoples with dementia and CIND, as well as that of their carers and families. DISCUSSION: The Let's CHAT Dementia project will co-design, implement and evaluate a culturally responsive best practice model of care embedded within current Indigenous primary health care. The best practice model of care has the potential to optimise the timely detection (especially in the early stages) and improve the ongoing management of people with dementia or cognitive impairment. TRIAL REGISTRATION: ACTRN12618001485224. Date of registration: 04 of September 2019.

The Rise of Pregnancy Apps and the Implications for Culturally and Linguistically Diverse Women: Narrative Review.

BACKGROUND: Pregnancy apps are a booming global industry, with most pregnant women in high-income countries now using them. From the perspective of health care and health information provision, this is both encouraging and unsettling; the demand indicates a clear direction for the development of future resources, but it also underscores the importance of processes ensuring access, reliability, and quality control. OBJECTIVE: This review provides an overview of current literature on pregnancy apps and aims at describing (1) the ways in which apps are used by women, in general, and by those of a culturally and linguistically diverse (CALD) background; (2) the utility and quality of information provided; and (3) areas where more research, development, and oversight are needed. METHODS: We chose a narrative review methodology for the study and performed a structured literature search including studies published between 2012 and 2017. Searches were performed using MEDLINE, EMBASE, and CINAHL databases. Studies were identified for inclusion using two separate search criteria and strategies: (1) studies on pregnancy apps and pregnant women's use of these apps and (2) studies on CALD pregnant women and their use of technology for accessing information on and services for pregnancy. Overall, we selected 38 studies. RESULTS: We found that pregnancy apps were principally used to access pregnancy health and fetal development information. Data storage capability, Web-based features or personalized tools, and social media features were also popular app features sought by women. Lower rates of the pregnancy app uptake were indicated among lower-income and non-English-speaking women. Preliminary evidence indicates that a combination of technological, health literacy, and language issues may result in lower uptake of pregnancy apps by these groups; however, further investigation is required. A marked limitation of the health app industry is lack of regulation in a commercially dominated field, making it difficult for users to assess the reliability of the information being presented. Health professionals and users alike indicate that given the choice, they would prefer using pregnancy apps that are relevant to their local health care context and come from a trusted source. Evidence indicates a need for greater health professional and institutional engagement in the app development, as well as awareness of and guidance for women's use of these resources. CONCLUSIONS: This is the first review of pregnancy app use, types of information provided, and features preferred by pregnant women in general and by those of a CALD background in particular. It indicates the demand for access to accurate information that is relevant to users, their community, and their associated health services. Given the popularity of pregnancy apps, such apps have enormous potential to be used for the provision of accurate, evidence-based health information.

Health professionals' views on health literacy issues for culturally and linguistically diverse women in maternity care: barriers, enablers and the need for an integrated approach.

Objective To identify health literacy issues when providing maternity care to culturally and linguistically diverse (CALD) women, and the strategies needed for health professionals to collaboratively address these issues. Methods A qualitative case study design was undertaken at one large metropolitan Australian hospital serving a highly CALD population. Semistructured interviews were conducted with a range of maternity healthcare staff. The data were analysed thematically. The study is informed by a framework of cultural competence education interventions for health professionals and a health literacy framework. Results Eighteen clinicians participated in the interviews (seven midwives, five obstetricians, five physiotherapists, one social worker, and one occupational therapist). Emergent themes of health literacy-related issues were: patient-based factors (communication and cultural barriers, access issues); provider-based factors (time constraints, interpreter issues); and enablers (cultural awareness among staff, technology). Conclusions There are significant health literacy and systemic issues affecting the hospital's provision of maternity care for CALD women. These findings, mapped onto the four domains of cultural competence education interventions will inform a technology-delivered health literacy intervention for CALD maternity patients. This approach may be applied to other culturally diverse healthcare settings to foster patient health literacy. What is known about the topic? There are health inequities for pregnant women of culturally and linguistically diverse (CALD) backgrounds. Low health literacy compounded by language and cultural factors contribute to these inequities and access to interpreters in pregnancy care remains an ongoing issue. Pregnancy smart phone applications are a popular source of health information for pregnant women yet these apps are not tailored for CALD women nor are they part of a regulated industry. What does this paper add? This paper provides clinician and language service staff perspectives on key health literacy issues that are both patient-based and provider-based. This research confirms that the complex interplay of social and practical factors contributes to and perpetuates low health literacy, creating barriers to health access; it also highlights several enablers for increasing CALD health literacy and access. These include greater health practitioner awareness and accommodation of CALD women's needs and the provision of culturally and linguistically appropriate eHealth resources. What are the implications for practitioners? eHealth resources are emerging as valuable enabling tools to address the health literacy and information needs of pregnant women. However, these resources need to be used adjunctively with health practitioner communication. Both resource developers and health practitioners need to understand issues affecting CALD patients and their needs. Developers need to consider how the resource addresses these needs. Training of health professionals about culture-specific issues may help to enhance communication with, and therefore health literacy among, individual cultural groups. Further, formalised language and interpreting training of bi- or multilingual health professionals is advised to ensure that they are able to interpret to a professional standard when called on to do so.

A good resource for parents, but will clinicians use it?: Evaluation of a resource for paediatric end-of-life decision making.

BACKGROUND: Communication with parents about end-of-life care and decisions is a difficult and sensitive process. The objective of the present study was to ascertain clinicians' views on the acceptability and usefulness of a handbook and web-based resource (Caring Decisions) that was designed as an aid for parents facing end-of-life decisions for their child. METHODS: Qualitative interviews were conducted with a range of health professionals who provide care to children facing life-limiting conditions. RESULTS: Data analysis confirmed the acceptability and usefulness of the resource. Two major themes were revealed: 1. Family empowerment, with sub-themes Giving words and clarity, Conversation starter, 'I'm not alone in this', and A resource to take away, highlighted how the resource filled a gap by supporting and enabling families in a multitude of ways; 2. Not just for families, with sub-themes A guide for staff, When to give the resource?, How to give the resource and Who should give the resource?, explored the significant finding that participants viewed the resource as a valuable tool for themselves, but its presence also brought into relief potential gaps in communication processes around end-of-life care. CONCLUSION: The interview data indicated the positive reception and clear value and need for this type of resource. However, it is likely that successful resource uptake will be contingent on discussion and planning around dissemination and use within the health care team.

Culturally and Linguistically Diverse Populations in Medical Research: Perceptions and Experiences of Older Italians, Their Families, Ethics Administrators and Researchers.

BACKGROUND: Low-participation of culturally and linguistically diverse (CALD) patients in medical research remains a problem in migrant and refugee destination countries such as Australia. The aims of this study were to explore i) CALD persons' perceptions and experiences of the medical system and medical research, in this case, older Italian Australians; and ii) the views of research professionals on CALD patient participation in medical research. DESIGN AND METHODS: A qualitative study was conducted in Melbourne, Australia, in 2015 utilising in-depth interviews and focus groups with four stakeholder groups: older Italian Australians (n=21); adult children of older Italian Australians (n=10); hospital Human Research Ethics Committee administrators (n=4); and clinical researchers (n=4). The data were analysed for content and thematic analysis. RESULTS: Themes for the CALD and family group were getting by in medical interactions; receptivity to medical research: testing the waters; and, receptivity to technology for support: passive versus active. Themes for the researcher and HREC groups about CALD patient participation in research were: exclusion; cultural factors; and e-consent. CONCLUSIONS: Our findings from four stakeholder perspectives and experiences confirm that there were considerable cultural, linguistic, and resourcing barriers hindering the participation of older Italian-Australians in medical research. Furthermore, our findings showed that in this study setting there were few enabling strategies in place to address these barriers despite the national ethics guidelines for equitable participation in research. The findings informed the creation of a multimedia tool whose purpose is to address and improve representation of CALD groups in clinical research. Significance for public healthMany people from culturally and linguistically diverse (CALD) backgrounds remain excluded from medical research such as clinical trials due to a range of language and cultural factors that can be amplified when this population is ageing. This exclusion has implications for the ability of CALD populations to benefit from participating in medical research and for applying research findings to CALD populations. It is essential to develop and implement strategies to include CALD communities in medical research and to uphold the ethical obligation of obtaining informed consent to research. The findings of this study have guided the development of a tablet-based resource which can be used in clinical and community contexts to raise awareness about the purpose of medical research. The resource has been carefully designed to be appropriate for participants' cultural background as well as their preferred language and literacy level. Such a resource has potential to address some of the cultural and linguistic barriers to clinical trial participation of CALD populations.

A review of approaches to improve participation of culturally and linguistically diverse populations in clinical trials.

The under-representation of culturally and linguistically diverse participants in clinical trials is an ongoing concern for medical researchers and the community. The aim of this review is to examine the complex issue of recruiting culturally and linguistically diverse (CALD) older people to medical research and to examine responses to these issues. The review focuses on (1) trends in the existing literature on barriers to and strategies for recruiting CALD and older people to clinical research, (2) issues with informed consent for CALD populations, and (3) the efficacy of innovative approaches, including approaches incorporating multimedia in research and consent processes. The literature indicates that predominant barriers to greater involvement of CALD patients in clinical trials are communication, including literacy and health literacy considerations; English language competence; and cultural factors in the research setting such as mistrust of consent processes, as well as considerable practical and logistical barriers, including mobility considerations. Some evidence exists that incorporating multimedia resources into the informed consent process can improve patient understanding and is preferred by patients, yet these findings are inconclusive. A multi-methodological approach, including the use of culturally and linguistically sensitive multimedia tools, may help address the issue of low inclusion of CALD groups in clinical research. Researcher education needs to be taken into account to address preconceptions about CALD resistance to research participation and to raise awareness of cultural concerns in regard to research participation.