Indigenous governance, ethics and data collection in Australian clinical registries.

OBJECTIVES: To examine Indigenous Governance of Data processes in Australian clinical registries. DESIGN, SETTING, PARTICIPANTS: Audit (via desktop review and interviews) of registries in the Australian Register of Clinical Registries from 17 January 2022 to 30 April 2023. MAIN OUTCOME MEASURES: The number of clinical registries collecting ethnicity data, reporting Aboriginal and/or Torres Strait Islander representation on registry governance or steering committees, and reporting human research ethics committee approval. RESULTS: A total of 107 clinical registries were reviewed. Of these registries, 65 (61%) collected ethnicity data; when these were grouped by geographical coverage, those most likely to collect ethnicity data were binational (24/40 [60%]), national (19/26 [73%]) or state based (19/26 [73%]). Of the registries that collected ethnicity data, 29 (45%) classified their ethnicity item as Aboriginal and/or Torres Strait Islander. Only eight clinical registries (7%) reported Aboriginal and/or Torres Strait Islander representation on their governance or steering committees. Human research ethics approval was reported in 94 registries (88%), with only 11 (12%) having Aboriginal human research ethics committee approval. CONCLUSION: Significant variability is evident in clinical registry recording of Indigenous governance of data, meaning that Aboriginal and Torres Strait Islander communities remain invisible in data which is used to inform policy, clinical models of care, health services and initiatives. Radical change is required to facilitate meaningful change in quality indicators for clinical registries nationally.

Looking out across the front yard: aboriginal peoples' views of frailty in the community - A qualitative study.

OBJECTIVE: Frailty is one of the most significant challenges to healthy ageing. Aboriginal Australians experience some of the highest levels of frailty worldwide, and despite this, no studies have explored frailty from an Aboriginal perspective. This is important because Aboriginal understandings and priorities in frailty may differ from Western/mainstream frailty frameworks. Furthermore, this lack of research severely hampers healthcare planning and service delivery. As a starting point, this study aims to understand the experiences, attitudes, and perceptions that Aboriginal older adults hold regarding frailty. DESIGN: A qualitative study that utilized the Indigenous research method of Yarning for data collection as a culturally appropriate process for engaging Aboriginal peoples. Yarning circles and one-on-one yarns with 22 Aboriginal adults aged 45+ years living in one Australian capital city took place online and over the phone to explore the views that Aboriginal adults hold around frailty. Data were analysed thematically by Aboriginal researchers. RESULTS: Seven key thematic areas were identified: (1) Keep in with culture; (2) Physical markers of frailty; (3) Frailty throughout the life course; (4) Social, cultural, and psychological understandings of frailty; (5) We want information about frailty; (6) Appropriate and positive wording; (7) Frailty assessment. CONCLUSIONS: There was interest and engagement in the concept of frailty by Aboriginal older adults and approaches to frailty that extend beyond the physical to address cognitive, psychosocial, cultural and spiritual domains are likely to be more acceptable to this population. Culture and community connectivity are essential elements in preventing and alleviating frailty and have wider positive implications for Aboriginal health and wellbeing. Existing tools in practice to assess frailty are not aligned with Aboriginal cultural norms. Culturally appropriate frailty assessment methods co-designed with the community which incorporate holistic and multidimensional approaches are urgently needed.

Decentralized clinical trials for medications to reduce the risk of dementia: Consensus report and guidance.

INTRODUCTION: Recent growth in the functionality and use of technology has prompted an increased interest in the potential for remote or decentralized clinical trials in dementia. There are many potential benefits associated with decentralized medication trials, but we currently lack specific recommendations for their delivery in the dementia field. METHODS: A modified Delphi method engaged an expert panel to develop recommendations for the conduct of decentralized medication trials in dementia prevention. A working group of researchers and clinicians with expertise in dementia trials further refined the recommendations. RESULTS: Overall, the recommendations support the delivery of decentralized trials in dementia prevention provided adequate safety checks and balances are included. A total of 40 recommendations are presented, spanning aspects of decentralized clinical trials, including safety, dispensing, outcome assessment, and data collection. DISCUSSION: These recommendations provide an accessible, pragmatic guide for the design and conduct of remote medication trials for dementia prevention. HIGHLIGHTS: Clinical trials of medication have begun adopting decentralized approaches. Researchers in the field lack guidance on what would be appropriate circumstances and frameworks for what would be appropriate circumstances and frameworks for the use of decentralized trial methods in dementia prevention. The present report provides consensus-based expert recommendations for decentralized clinical trials for dementia prevention.

Emotion Dysregulation as a Moderator of the Association Between Relationship Dependency and Female-Perpetrated Dating Aggression.

The dependency-possessiveness model proposes that individuals who are highly dependent on their intimate partner and fear partner abandonment, particularly among those with emotion dysregulation problems, may be at heightened risk for intimate partner aggression (IPA) perpetration. Despite prior research establishing a link between relationship dependency and male IPA perpetration, it is unknown whether this association extends to female-perpetrated aggression, occurs in dating relationships, and is moderated by emotion dysregulation. Thus, the purpose of the current study was to investigate the association between relationship dependency and female-perpetrated dating aggression and determine if emotion dysregulation moderated this hypothesized relationship. Female undergraduate students (N = 119) completed measures assessing relationship dependency, emotion dysregulation, and female-perpetrated physical and psychological dating aggression as part of a larger study investigating the context of dating aggression episodes. Anxious attachment was significantly correlated with female-perpetrated psychological and physical dating aggression. Regression analyses indicated a significant interaction between the Spouse-Specific Dependency Scale [SSDS] Anxious Attachment subscale and emotion dysregulation predicting female-perpetrated physical dating aggression, suggesting moderation. There was a positive association between anxious attachment relationship dependency and female-perpetrated physical dating aggression at high levels of emotion dysregulation. A significant interaction was also found between the SSDS Emotional Dependency subscale and emotion dysregulation predicting female-perpetrated physical dating aggression, such that among those with low scores in emotion dysregulation, there was a positive relationship between emotional dependency and female-perpetrated physical dating aggression. Findings suggest that the ability to regulate emotions may play an important role in the association between relationship dependency and female-perpetrated dating aggression.

Frailty in Indigenous Populations: A Scoping Review.

Background: Indigenous populations experience high rates of age-related illness when compared to their non-Indigenous counterparts. Frailty is a challenging expression of aging and an important public health priority. The purpose of this review was to map what the existing literature reports around frailty in Indigenous populations and to highlight the current gaps in frailty research within the Indigenous landscape. Method: Scoping review of English language original research articles focusing on frailty within Indigenous adult populations in settler colonial countries (Australia, Canada, New Zealand and USA). Ten electronic databases and eight relevant institutional websites were searched from inception to October 2020. Results: Nine articles met our inclusion criteria, finding this population having a higher prevalence of frailty and frailty occurring at younger ages when compared to their non-Indigenous counterparts, but two did not use a formal frailty tool. Females presented with higher levels of frailty. No culturally specific frailty tool was identified, and the included articles did not assess strategies or interventions to manage or prevent frailty in Indigenous peoples. Conclusions: There was little definitive evidence of the true frailty prevalence, approaches to frailty screening and of potential points of intervention to manage or prevent the onset of frailty. Improvements in the quality of evidence are urgently needed, along with further research to determine the factors contributing to higher rates of frailty within Indigenous populations. Incorporation of Indigenous views of frailty, and instruments and programs that are led and designed by Indigenous communities, are crucial to address this public health priority.