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Exploring the Reported Strengths and Limitations of Aboriginal and Torres Strait Islander Health Research: A Narrative Review of Intervention Studies.

ABSTRACT: High quality intervention research is needed to inform evidence-based practice and policy for Aboriginal and Torres Strait Islander communities. We searched for studies published from 2008-2020 in the PubMed database. A narrative review of intervention literature was conducted, where we identified researcher reported strengths and limitations of their research practice. A total of 240 studies met inclusion criteria which were categorised as evaluations, trials, pilot interventions or implementation studies. Reported strengths included community engagement and partnerships; sample qualities; Aboriginal and Torres Strait Islander involvement in research; culturally appropriate and safe research practice; capacity building efforts; providing resources or reducing costs for services and communities; understanding local culture and context; and appropriate timelines for completion. Reported limitations included difficulties achieving the target sample size; inadequate time; insufficient funding and resources; limited capacity of health workers and services; and inadequate community involvement and communication issues. This review highlights that community consultation and leadership coupled with appropriate time and funding, enables Aboriginal and Torres Strait Islander health intervention research to be conducted. These factors can enable effective intervention research, and consequently can help improve health and wellbeing outcomes for Aboriginal and Torres Strait Islander people.

SUBMITTER: McGuffog R

PROVIDER: S-EPMC10001772 | biostudies-literature | 2023 Feb

REPOSITORIES: biostudies-literature

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Exploring the Reported Strengths and Limitations of Aboriginal and Torres Strait Islander Health Research: A Narrative Review of Intervention Studies.

McGuffog Romany R Bryant Jamie J Booth Kade K Collis Felicity F Brown Alex A Hughes Jaquelyne T JT Chamberlain Catherine C McGhie Alexandra A Hobden Breanne B Kennedy Michelle M

International journal of environmental research and public health 20230223 5

High quality intervention research is needed to inform evidence-based practice and policy for Aboriginal and Torres Strait Islander communities. We searched for studies published from 2008-2020 in the PubMed database. A narrative review of intervention literature was conducted, where we identified researcher reported strengths and limitations of their research practice. A total of 240 studies met inclusion criteria which were categorised as evaluations, trials, pilot interventions or implementat ...[more]

PMID: 36901001

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Project description:BackgroundFor Aboriginal and Torres Strait Islander peoples, culture is foundational to health and wellbeing. However, its inherent conceptual complexity and diversity across and within different Aboriginal and Torres Strait Islander cultural groups means that it has rarely been explored in depth by epidemiological research. As a result, there are very few measures which adequately represent the heterogeneity and importance of Aboriginal and Torres Strait Islander cultures for health and wellbeing. Tools grounded in the social determinants of health are mostly based on European academic opinion about what constitutes culture and wellbeing, and the views of Indigenous peoples are rarely included. Mayi Kuwayu, the National Study of Aboriginal and Torres Strait Islander Wellbeing, developed a new survey tool based on health and wellbeing as perceived by Aboriginal and Torres Strait Islander people. This paper describes several of the key processes used to identify cultural domains and develop questionnaire items for the survey tool, reflecting the importance of culture to Aboriginal and Torres Strait Islander peoples.MethodsFocus groups were conducted at community organisations and conferences with Aboriginal and Torres Strait Islander people. These sessions were aimed at identifying key cultural domains to be addressed by the Mayi Kuwayu questionnaire and to field test drafts of the questionnaire, which were then modified according to focus group feedback and expert input.ResultsExtensive community consultations allowed us to identify key cultural domains, generate questionnaire items, and test initial content validity. The six overarching cultural domains identified during the development of the Mayi Kuwayu questionnaire were: Connection to Country; Beliefs and knowledge; Language; Family, kinship, and community; Cultural expression and continuity; and Self-determination and leadership.ConclusionsThe processes used by Mayi Kuwayu have generated meaningful cultural items for use in Aboriginal and Torres Strait Islander health and wellbeing research. Further assessment of these processes, including a comparison with best practice guidelines and psychometric testing of the items and scales developed, will be conducted in a future program of work.

Project description:IntroductionThe cultural determinants of health centre an Indigenous definition of health, and have been linked to positive health and wellbeing outcomes. There is growing evidence for the importance of the cultural determinants of health; however, to date, no high-level overview of the evidence-base has been provided. Synthesising existing literature on cultural determinants of health for Aboriginal peoples in a single manuscript will highlight what we know, and what needs to be explored in future research. It will also contribute to global efforts to capture the evidence of cultural determinant approaches amongst Indigenous populations. We therefore endeavoured to identify cultural determinants and highlight their impact on Aboriginal health and wellbeing outcomes, and outline the relationship and interconnection of different cultural determinants of health.MethodsAn overview of reviews was conducted. Medline (Ovid) and Scopus were searched using terms related to 'cultural determinants of health' and an 'Aboriginal definition of health'. The database search was complemented by a web-based search of grey literature. Nine reviews were retrieved and included in our overview.ResultsFamily/community, Country and place, cultural identity and self-determination were strongly identified across reviews as having a positive impact on the health and wellbeing outcomes of Aboriginal peoples. Family/community and Country and place were found to be components of 'culture' that shaped cultural identity. Self-determination was outlined as a requirement for Aboriginal peoples to pursue their cultural, social, and economic rights.Discussion/conclusionsCultural determinants are associated with health benefits for Indigenous peoples. A causal framework, developed to discuss the relationship and interconnection of the cultural determinants of health, demonstrates that cultural identity at an individual-level is important to benefiting from other cultural determinants of health. While self-determination and connection to culture and community-controlled organisations are integral factors to increase Aboriginal resilience and resistance and improve health and wellbeing outcomes. Further research is required to shift towards a multi-level understanding of the cultural determinants of health and to develop an Indigenous-led evidence-base around causal pathways. Such a shift would ensure priorities important to Indigenous peoples are captured in policy and practice.

Project description:IntroductionKnowledge translation (KT) involves bridging the gaps between research knowledge and research application or practice, by sharing this knowledge with knowledge-users. KT is increasingly being used in research with Indigenous peoples globally to address the top-down and inappropriate research approaches commonly used in Indigenous research. Employing KT in Indigenous research in Australia is an emergent field, despite Aboriginal and Torres Strait Islander peoples having conducted KT for generations.There is limited evidence which demonstrates how KT is applied in the Aboriginal/Torres Strait Islander context. Results will benefit researchers by demonstrating ways of appropriately translating research findings to knowledge-users, including Aboriginal and Torres Strait Islander communities, researchers and policy makers. The scoping review will also inform a KT definition, method and practices used in a large-scale, longitudinal cohort study of Aboriginal and Torres Strait Islander adults: the Mayi Kuwayu Study.Methods and analysisUnder guidance of an Aboriginal and Torres Strait Islander governance committee, we will conduct a scoping review on KT in Aboriginal/Torres Strait Islander research. We will follow the scoping review method outlined by the Joanna Briggs Institute. We will search the ANU SuperSearch, and grey and hard to find literature in June 2022. Abstracts and full-text articles will be screened by two independent reviewers. We will include studies that relate to KT in Aboriginal/Torres Strait Islander research, regardless of the research topic. Results will be used to inform the KT definition, method and practices that can be used in Aboriginal/Torres Strait Islander research contexts in Australia.Ethics and disseminationThe Mayi Kuwayu Study has ethics approvals from the Australian Institute of Aboriginal and Torres Strait Islander Studies, 12 Aboriginal/Torres Strait Islander organisations, and the Australian National University Human Research Ethics Committee. Results will be disseminated through peer-review publication and community workshops. Protocol registration is available online (10.17605/OSF.IO/JMFQ3).

Project description:BackgroundIt is well established that Aboriginal and Torres Strait Islander populations face considerable health inequities, exacerbated by poorer healthcare quality. Patient experience is recognised as a major contributing factor to healthcare quality and outcomes, therefore, enriched knowledge of the patient experiences of Aboriginal and Torres Strait Islander populations is critical to redress health inequities. This review synthesises evidence of the healthcare experiences amongst Aboriginal and Torres Strait Islander patients through a metanarrative synthesis of qualitative literature.MethodsA systematic search strategy was developed and applied to six electronic databases between January 2000 and July 2019. Titles and abstracts were screened before applying the inclusion criteria to full text articles. A meta-narrative synthesis was undertaken.ResultsFifty-four publications were identified from four research traditions; each with a unique conceptualisation of patient experience. Three themes emerged that demonstrate Aboriginal and Torres Strait Islander patient experiences are informed by 1) beliefs about wellbeing and healthcare provision, 2) their level of trust in the healthcare system, and 3) individual and community health system interactions. The findings highlight a range of aspects of patient experience that were important to participating Aboriginal and Torres Strait Islanders in the included studies but not captured currently in health system surveys.ConclusionThis review highlights the influence of beliefs about health and wellbeing on the patient experience amongst Aboriginal and Torres Strait Islander populations in the Australian health system. Patient experiences were informed by past experience and their trust in the health system. The different factors influencing patient experience and the gravity of their influence must be considered in current approaches to capturing patient experience data collection methods.Trial registrationPROSPERO (ID: CRD42019134765 ).

Project description:BackgroundUnderstanding normative retinal thickness characteristics is critical for diagnosis and monitoring of pathology, particularly in those predisposed to retinal disease. The macular retinal layer thickness of Australian Aboriginal and/or Torres Strait Islander children was examined using spectral-domain optical coherence tomography.MethodsHigh-resolution macular optical coherence tomography imaging was performed on 100 Aboriginal and/or Torres Strait Islander children and 150 non-Indigenous visually healthy children aged 4-18 years. The imaging protocol included a 6-line radial scan centred on the fovea. Images were segmented using semi-automated software to derive thickness of the total retina, inner and outer retina, and individual retinal layers across the macular region. Repeated measures ANOVAs examined variations in thickness associated with retinal region, age, gender and Indigenous status.ResultsRetinal thickness showed significant topographical variations (p < 0.01), being thinnest in the foveal zone, and thickest in the parafovea. The retina of Aboriginal and/or Torres Strait Islander children was significantly thinner than non-Indigenous children in the foveal (p < 0.001), parafoveal (p = 0.002), and perifoveal zones (p = 0.01), with the greatest difference in the foveal zone (mean difference: 14.2 μm). Inner retinal thickness was also thinner in Aboriginal and/or Torres Strait Islander children compared to non-Indigenous children in the parafoveal zone (p < 0.001), and outer retinal thickness was thinner in the foveal (p < 0.001) and perifoveal zone (p < 0.001). Retinal thickness was also significantly greater in males than females (p < 0.001) and showed a statistically significant positive association with age (p = 0.01).ConclusionThere are significant differences in macular retinal thickness between Aboriginal and/or Torres Strait Islander children and non-Indigenous children, which has implications for interpreting optical coherence tomography data and may relate to risk of macula disease in this population.

Project description:BackgroundLiver disease and hepatocellular carcinoma (HCC) are important contributors to the mortality gap between Indigenous and non-Indigenous Australians. However, there is a lack of population based high quality data assessing the differences in HCC epidemiology and outcomes according to Indigenous status. The aim of this study was therefore to perform a large epidemiological study of HCC investigating differences between Indigenous and non-Indigenous Australians with HCC.MethodsStudy design was a retrospective cohort study. Data linkage methodology was used to link data from cancer registries with hospital separation summaries across three Australian jurisdictions during 2000-2017. Cumulative survival (Kaplan-Meier) and the differences in survival (Multivariable Cox-regression) by Indigenous status were assessed.FindingsA total of 229 Indigenous and 3587 non-Indigenous HCC cases were included in the analyses. Significant epidemiological differences identified for Indigenous HCC cases included younger age at onset, higher proportion of females, higher rurality, lower socioeconomic status, and higher comorbidity burden (all p < 0.001). The distribution of cofactors was also significantly different for Indigenous Australians including higher prevalence of alcohol misuse, hepatitis B, and diabetes and more frequent presence of multiple HCC cofactors (all p < 0.001). Indigenous Australians received curative HCC therapies less frequently (6.6% vs. 14.5%, p < 0.001) and had poorer 5-year survival (10.0% vs. 17.3%, p < 0.001; unadjusted hazard ratio (HR) =1.42 96%CI 1.21-1.65) compared to non-Indigenous Australians. The strength of the association between indigenous status and survival was weaker and statistically non-significant after adjusting for rurality, comorbidity burden and lack of curative therapy (adjusted-HR=1.20 95%CI 0.97-1.47).InterpretationSuch data provide a call to action to help design and implement health literacy, liver management and HCC surveillance programs for Indigenous people to help close the liver cancer mortality gap.

Project description:BackgroundAboriginal and Torres Strait Islander children experience a high burden of otitis media. We collected data on symptoms associated with acute otitis media (AOM) in a clinical trial involving children receiving primary care at urban Aboriginal Medical Services. Two scales were employed to monitor symptoms over time: the AOM-Severity of Symptoms scale (AOM-SOS) and the AOM-Faces Scale (AOM-FS). This study took place at a mid-point of the un-blinded trial.MethodsWe examined symptoms at enrolment and day 7, and compared the scales for trends, and bivariate correlation (Spearman's rho) over 14 days. Responsiveness of the scales to clinical change was determined by Friedman's test of trend in two subgroups stratified by day 7 AOM status. We interviewed parents/carers and research officers regarding their experience of the scales and analysed data thematically.ResultsData derived from 224 children (18 months to 16 years; median 3.6 years). Common symptoms associated with AOM at baseline were runny nose (40%), cough (38%) and irritability (36%). More than one third had no or minimal symptoms at baseline according to AOM-SOS (1-2/10) and AOM-FS scores (1-2/7). The scales performed similarly, and were moderately correlated, at all study points. Although scores decreased from day 0 to 14, trends and mean scores were the same whether AOM was persistent or resolved at day 7. Users preferred the simplicity of the AOM-FS but encountered challenges when interpreting it.ConclusionWe found minimally symptomatic AOM was common among Aboriginal and Torres Strait Islander children in urban settings. The AOM-SOS and AOM-FS functioned similarly. However, it is likely the scales measured concurrent symptoms related to upper respiratory tract infections, given they did not differentiate children with persistent or resolved AOM based on stringent diagnostic criteria. This appears to limit the research and clinical value of the scales in monitoring AOM treatment among Aboriginal and Torres Strait Islander children.

Project description:ObjectiveTo better understand how to undertake valuable, ethical and sustainable randomised controlled clinical trial (RCT) research within Aboriginal and Torres Strait Islander primary health services.DesignIn a qualitative approach, we utilised data collected between 2013 and 2020 during the planning and implementation of two RCTs. The data comprised agreed records of research meetings, and semistructured interviews with clinical trial stakeholders. The stakeholders were parents/carers of child participants, and site-based research officers, healthcare providers and community advisory groups. Our thematic analysis was informed by constructivist grounded theory.SettingThe RCTs investigated the management of otitis media in Aboriginal and Torres Strait Islander children, with the first RCT commencing recruitment in 2014 and the second in 2017. They took place in Aboriginal Medical Services (AMSs), large primary health services for Aboriginal and Torres Strait Islander people, based in urban and regional communities across two Australian states and one territory.ResultsWe analysed data from 56 meetings and 67 interviews, generating themes on making research valuable and undertaking ethical and sustainable RCTs. Aboriginal and Torres Strait Islander leadership, and support of AMSs in their service delivery function were critical. The broad benefits of the trials were considered important to sustainability, including workforce development, enhanced ear healthcare and multidirectional research capacity building. Participants emphasised the long-term responsibility of research teams to deliver benefits to AMSs and communities regardless of RCT outcomes, and to focus on relationships, reciprocity and creating positive experiences of research.ConclusionWe identify principles and strategies to assist in undertaking ethical and sustainable RCTs within Aboriginal and Torres Strait Islander primary health services. Maintaining relationships with AMSs and focusing on mutual workforce development and capacity building creates opportunities for long-term benefits so that health research and RCTs work for Aboriginal and Torres Strait Islander peoples, services, communities and researchers.Trial registration numberACTRN12613001068752 (Pre-results); ACTRN12617001652369 (Pre-results).

Dataset Information

Exploring the Reported Strengths and Limitations of Aboriginal and Torres Strait Islander Health Research: A Narrative Review of Intervention Studies.

Publications

Exploring the Reported Strengths and Limitations of Aboriginal and Torres Strait Islander Health Research: A Narrative Review of Intervention Studies.

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