Conducting high-quality, culturally-appropriate primary healthcare research with Aboriginal and Torres Strait Islander peoples

Health research should inform culturally-appropriate, evidence-based primary healthcare (PHC), potentially enhancing social and emotional wellbeing (SEWB) among Aboriginal and Torres Strait Islander (hereafter referred to as Indigenous) Peoples. When conducting such research, scientific and ethical quality should be forefront. Aim To identify approaches and enablers to conducting high-quality, culturally-appropriate Indigenous-focused SEWB PHC research. Methods This thesis comprises three sections: firstly, two systematic reviews of the Indigenous-focused SEWB PHC research literature; secondly, an in-depth critical and reflective case study of an Indigenous-focused SEWB PHC research project entitled Getting it Right: the validation study (hereafter referred to as Getting it Right); finally, a process evaluation of Getting it Right using a grounded theory approach. Results Twenty-five research projects were included in the systematic reviews. Two were judged as high quality using scientific and ethical criteria. Research projects that were judged as ethical used culturally-sensitive approaches, focused on developing relationships and involved community members. These approaches also appeared to enable this research. Getting it Right had an adaptive protocol (where localised approaches were developed within certain requirements) and PHC services were reimbursed on a per participant basis. The research was evaluated as meeting scientific and ethical quality criteria. The process evaluation showed that the research was acceptable to most participating staff (n=36), community members (n=4) and participants (n=500). Many were willing to participate in research and speak about SEWB. Staff reported that the reimbursement provided to the service sufficiently resourced the research. Conclusion High-quality, culturally-appropriate Indigenous-focused SEWB PHC research can be facilitated by culturally-sensitive, flexible, collaborative and sufficiently-funded approaches

The conduct of Australian Indigenous primary health care research focusing on social and emotional wellbeing: a systematic review

Objectives and importance of study: Values and ethics: guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research (Values and ethics) describes key values that should underpin Aboriginal and Torres Strait Islander (Indigenous)-focused health research. It is unclear how research teams address this document in primary health care research. We systematically review the primary health care literature focusing on Indigenous social and emotional wellbeing (SEWB) to identify how Values and ethics and community preferences for standards of behaviour (local protocols) are addressed during research. Systematic review in accordance with PRISMA Guidelines and MOOSE Guidelines for Meta-Analyses and Systematic Reviews of Observational Studies. We searched four databases and one Indigenous-specific website for qualitative, quantitative and mixed-method studies published since Values and ethics was implemented (2003). Included studies were conducted in primary health care services, focused on Indigenous SEWB and were conducted by research teams. Using standard data extraction forms, we identified actions taken (reported by authors or identified by us) relating to Values and ethics and local protocols. A total of 25 studies were included. Authors of two studies explicitly mentioned the Values and ethics document, but neither reported how their actions related to the document's values. In more than half the studies, we identified at least three actions relating to the values. Some actions related to multiple values, including use of culturally sensitive research processes and involving Indigenous representatives in the research team. Local protocols were rarely reported. Addressing Values and ethics appears to improve research projects. The academic community should focus on culturally sensitive research processes, relationship building and developing the Indigenous research workforce, to facilitate acceptable research that affects health outcomes. For Values and ethics to achieve its full impact and to improve learning between research teams, authors should be encouraged to report how the principles are addressed during research, including barriers and enablers that are encountered

What do we know about the diets of Aboriginal and Torres Strait Islander peoples in Australia? A systematic literature review.

OBJECTIVE: To provide an overview of published research on the dietary intake of Aboriginal and Torres Strait Islander peoples. METHODS: Peer-reviewed literature from 1990 to October 2016 was searched to identify studies that measured the dietary intake of Australian Aboriginal and Torres Strait Islander populations. Study quality was assessed using a purposely devised quality appraisal tool. Meta-analysis was not possible due to the heterogeneity in dietary intake assessment methods. A narrative synthesis of study findings, where key themes were compared and contrasted was completed. RESULTS: Twenty-five articles from twenty studies with outcome measures related to dietary intake were included. Dietary intake was assessed by electronic store sales, store turnover method, 24-hour dietary recall, food frequency questionnaire and short questions. Consistent findings were low reported intakes of fruit and vegetables and high intakes of total sugar and energy-dense, nutrient-poor food and beverages. CONCLUSIONS: While differences between studies and study quality limit the generalisability of the findings, most studies suggest that the diets of Aboriginal and Torres Strait Islander peoples are inadequate. Implications for public health: A more concerted approach to understanding dietary patterns of Aboriginal and Torres Strait Islander peoples is required to inform policy and practice to improve diet and nutrition

The quality of Australian Indigenous primary health care research focusing on social and emotional wellbeing: a systematic review

Objectives and importance of the study: Primary health care research focused on Aboriginal and Torres Strait Islander (Indigenous) people is needed to ensure that key frontline services provide evidence based and culturally appropriate care. We systematically reviewed the published primary health care literature to identify research designs, processes and outcomes, and assess the scientific quality of research focused on social and emotional wellbeing. This will inform future research to improve evidence based, culturally appropriate primary health care. Systematic review in accordance with PRISMA and MOOSE guidelines. Four databases and one Indigenous-specific project website were searched for qualitative, quantitative and mixed-method published research. Studies that were conducted in primary health care services and focused on the social and emotional wellbeing of Indigenous people were included. Scientific quality was assessed using risk-of-bias assessment tools that were modified to meet our aims. We assessed community acceptance by identifying the involvement of community governance structures and representation during research development, conduct and reporting. Data were extracted using standard forms developed for this review. We included 32 articles, which reported on 25 studies. Qualitative and mixed methods were used in 18 studies. Twelve articles were judged as high or unclear risk of bias, four as moderate and five as low risk of bias. Another four studies were not able to be assessed as they did not align with the risk-of-bias tools. Of the five articles judged as low risk of bias, two also had high community acceptance and both of these were qualitative. One used a phenomenological approach and the other combined participatory action research with a social-ecological perspective and incorporated 'two-way learning' principles. Of the 16 studies where a primary outcome was identified, eight aimed to identify perceptions or experiences. The remaining studies assessed resources, or evaluated services, interventions, programs or policies. We were unable to identify primary outcomes in eight studies. Conducting Indigenous-focused primary health care research that is scientifically robust, culturally appropriate and produces community-level outcomes is challenging. We suggest that research teams use participatory, culturally sensitive approaches and collaborate closely to plan and implement high-quality research that incorporates local perspectives. Research should result in beneficial outcomes for the communities involved

2015 ACVIM Small Animal Consensus Statement on Seizure Management in Dogs

This report represents a scientific and working clinical consensus statement on seizure management in dogs based on current literature and clinical expertise. The goal was to establish guidelines for a predetermined, concise, and logical sequential approach to chronic seizure management starting with seizure identification and diagnosis (not included in this report), reviewing decision‐making, treatment strategies, focusing on issues related to chronic antiepileptic drug treatment response and monitoring, and guidelines to enhance patient response and quality of life. Ultimately, we hope to provide a foundation for ongoing and future clinical epilepsy research in veterinary medicine

Process evaluation of a primary healthcare validation study of a culturally adapted depression screening tool for use by Aboriginal and Torres Strait Islander people: study protocol

Process evaluations are conducted alongside research projects to identify the context, impact and consequences of research, determine whether it was conducted per protocol and to understand how, why and for whom an intervention is effective. We present a process evaluation protocol for the Getting it Right research project, which aims to determine validity of a culturally adapted depression screening tool for use by Aboriginal and Torres Strait Islander people. In this process evaluation, we aim to: (1) explore the context, impact and consequences of conducting Getting It Right, (2) explore primary healthcare staff and community representatives' experiences with the research project, (3) determine if it was conducted per protocol and (4) explore experiences with the depression screening tool, including perceptions about how it could be implemented into practice (if found to be valid). We also describe the partnerships established to conduct this process evaluation and how the national Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research is met. Realist and grounded theory approaches are used. Qualitative data include semistructured interviews with primary healthcare staff and community representatives involved with Getting it Right. Iterative data collection and analysis will inform a coding framework. Interviews will continue until saturation of themes is reached, or all participants are considered. Data will be triangulated against administrative data and patient feedback. An Aboriginal and Torres Strait Islander Advisory Group guides this research. Researchers will be blinded from validation data outcomes for as long as is feasible. The University of Sydney Human Research Ethics Committee, Aboriginal Health and Medical Research Council of New South Wales and six state ethics committees have approved this research. Findings will be submitted to academic journals and presented at conferences. ACTRN12614000705684. [Abstract copyright: © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Getting it Right: study protocol to determine the diagnostic accuracy of a culturally-specific measure to screen for depression in Aboriginal and/or Torres Strait Islander people

Abstract Introduction: A freely available, culturally valid depression screening tool is required for use by primary care services across Australia to screen for depression in Aboriginal and/or Torres Strait Islander populations. This is the protocol for a study aiming to determine the validity, sensitivity and specificity of the culturally adapted 9-item Patient Health Questionnaire (aPHQ-9). Methods and analysis: Cross sectional validation study. A total of 500 people who self-identify as Aboriginal and/or Torres Strait Islander, are ≥ 18 years of age, attending one of 10 primary health care services or service events across Australia and able to communicate sufficiently to answer study questions will be recruited. All participants will complete the aPHQ-9 and the criterion standard MINI International Neuropsychiatric Interview (MINI) 6.0.0. The primary outcome is criterion validity of the aPHQ-9. Process outcomes related to acceptability and feasibility of the aPHQ-9 will be analysed only if the measure is found to be valid. Ethics and dissemination: Lead ethical approval was obtained jointly from the University of Sydney Human Research Ethics Committee (project 2014/361) and the Aboriginal Health and Medical Research Council of New South Wales (project 1044/14). Results will be disseminated via the usual scientific forums including peer-reviewed publications and presentations at international conferences following presentation to, discussion with and approval by participating primary health care service staff and community. Study registration number: ACTRN1261400070568

What are the resourcing requirements for an Aboriginal and Torres Strait Islander primary healthcare research project?

Objective and importance To explore the role of resourcing during an Aboriginal and Torres Strait Islander primary healthcare research project. Study type Process evaluation using grounded theory approaches of a national Aboriginal and Torres Strait Islander research project (N=500) named Getting it Right: The validation study. Methods Qualitative semi-structured interviews with thirty-six primary healthcare staff and four community members from nine of ten primary healthcare services (participating services) involved in the research project. Interviews included questions about the resources needed to conduct the research project, including flexible reimbursement to participating services (allocated within services), human resources and reimbursement to research participants (vouchers). Qualitative data were triangulated with participant feedback (questions about the aPHQ-9 [depression screening tool under examination] and free-text feedback collected during the research project), study administrative data (budgets, contracts, communication logs and ethics correspondence) and field notes kept by the interviewer. Results Three themes were identified: 1) the influence of reimbursement on participating services and the research project: 2) the influence of human resources on the research project at participating services; and 3) the consequences of offering vouchers to reimburse research participants. Reimbursement was allocated to research expenses (human resources and logistics) or non-research expenses (service operations, equipment and conference attendance costs). Most services opted to offer vouchers to compensate participants for their time, which staff considered was appropriate recognition of participants’ contributions and facilitated recruitment. Some staff described some potential unintended negative consequences from vouchers, including creating a welfare mentality or the wrong precedent. Conclusion Primary healthcare research should have sufficient resourcing available, including human resource capacity, to achieve research targets. Research planning should include consideration of the existing commitments, priorities and human capacity needs of services and patients

Returning to unpaid work after stroke: The Psychosocial Outcomes in Stroke Cohort Study

Background: While returning to paid work is a crucial marker of stroke recovery, little is known about the differences in unpaid work by sex following stroke. We aimed to determine the sex differences in participation in unpaid work 12 months after stroke. Methods: Psychosocial outcomes in stroke were a prospective, multicentre observational study that recruited individuals, 18–64 years, within 28 days of stroke from New South Wales, Australia. Unpaid work was defined as ≥5 h per week of one or more of: unpaid domestic work for the household; unpaid care of others; looking after own children without pay or looking after someone else’s children without pay. Data was collected before stroke, 28 days (baseline), 6 and 12 months follow-up. Results: Eighty per cent of women and 52% of men engaged in ≥5 h per week of unpaid work before stroke. At 12 months after, 69% of women and 53% of men completed ≥5 h of unpaid work per week. For women, there was a significant association between participation in unpaid work at 12 months and having financially dependent children (OR 2.67; 95% CI 1.08–6.59). A return to unpaid work in men was associated with participation in unpaid work before stroke (OR 3.74; 95% CI 2.14–6.53). Conclusions: More women are engaged in unpaid work before and at 12 months after stroke, but there is a reduction in the proportion of women returning to unpaid work at 12 months not seen in men. Consideration may need to be given to the development of rehabilitation strategies targeted at the specific needs of stroke survivors