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1.
BMJ Open ; 14(8): e082337, 2024 Aug 22.
Article in English | MEDLINE | ID: mdl-39179273

ABSTRACT

PURPOSE: The Aboriginal Families Study is a prospective, intergenerational cohort study with well-established Aboriginal governance arrangements and community partnerships to support all research processes including data collection, interpretation and knowledge translation. PARTICIPANTS: 344 Aboriginal and Torres Strait Islander children born in South Australia between July 2011 and June 2013 and their mothers and other primary caregivers. Two waves of survey data collection have been undertaken: early in the first year postpartum and when the study children were aged 5-8 years. Children participated in direct developmental assessments of their cognitive, speech and language development at 5-8 years of age. Social and cultural determinants of health and well-being have been assessed at each wave of data collection. FINDINGS TO DATE: Publications and policy briefs to date focus on social determinants of women's and children's physical and mental health; identifying gaps in access to pregnancy, postnatal, primary, specialist and allied healthcare; and evidence that Aboriginal-led services in South Australia have improved women's experiences and access to antenatal care. FUTURE PLANS: Wave 3 follow-up is planned as the study children reach 14-16 years of age. Longitudinal follow-up of women and children in the cohort will generate new knowledge about factors promoting children and young people's social and emotional well-being. Our goal is to build a stronger understanding of the potential for key domains of social and emotional well-being (eg, connection to community, family and kin, country and spirituality) to buffer the impacts of social determinants of health, including intergenerational trauma and social inequity.


Subject(s)
Caregivers , Mothers , Adolescent , Adult , Child , Child, Preschool , Female , Humans , Male , Pregnancy , Caregivers/psychology , Child Development , Mothers/psychology , Prospective Studies , Social Determinants of Health , South Australia , Australian Aboriginal and Torres Strait Islander Peoples
2.
PLoS One ; 19(4): e0301620, 2024.
Article in English | MEDLINE | ID: mdl-38626131

ABSTRACT

BACKGROUND: Resilience is a process of drawing on internal or external strengths to regain, sustain or improve adaptive outcomes despite adversity. Using a child resilience measure co-designed with Aboriginal and Torres Strait Islander communities, we investigate: 1) children's personal, family, school and community strengths; 2) gender differences; and 3) associations between resilience and wellbeing. METHODS: 1132 parent/caregivers of children aged 5-12 years were recruited to the Childhood Resilience Study, including through the Aboriginal Families Study. The Aboriginal Families Study is a population-based cohort of 344 mothers of an Aboriginal and/or Torres Strait Islander child. This paper focuses on the wave 2 survey data on child resilience at age 5-9 years (n = 231). Resilience was assessed with the Child Resilience Questionnaire-parent/caregiver report (CRQ-P/C), categorised into tertiles of low, moderate and high scores. Child emotional/behavioural wellbeing and mental health competence was assessed with the parent-report Strengths and Difficulties Questionnaire. All Tobit regression models adjusted for child age. OUTCOMES: Aboriginal and Torres Strait Islander girls had higher resilience scores compared to boys (Adj.ß = 0·9, 95%CI 0·9-1·4), with higher School Engagement, Friends and Connectedness to language scale scores. Resilience scores were strongly associated with wellbeing and high mental health competence. A higher proportion of girls with low resilience scores had positive wellbeing than did boys (73.3% versus 49.0%). High resilience scores were associated with lower SDQ total difficulties score after adjusting for child age, gender, maternal age and education and family location (major city, regional, remote) (Adj.ß = -3.4, 95%CI -5.1, -1.7). Compared to the Childhood Resilience Study sample, Aboriginal Families Study children had higher mean CRQ-P/C scores in the personal and family domains. INTERPRETATION: High family strengths can support Aboriginal and Torres Strait Islander children at both an individual and cultural level. Boys may benefit from added scaffolding by schools, family and communities to support their social and academic connectedness.


Subject(s)
Health Services, Indigenous , Resilience, Psychological , Male , Female , Humans , Child , Child, Preschool , Australia , Australian Aboriginal and Torres Strait Islander Peoples , Mental Health , Surveys and Questionnaires
3.
Compr Psychiatry ; 131: 152455, 2024 05.
Article in English | MEDLINE | ID: mdl-38340534

ABSTRACT

BACKGROUND: Few population-based data sources fully recognise the intersections between stressful events, social health issues, and cannabis use in pregnancy, and little is known about sequelae for women's mental health. METHODS: We draw on two waves of population-based data for 344 families participating in the Aboriginal Families Study longitudinal cohort. We examine women's mental health in the first year postpartum and when children were aged 5-9 years in context with life experiences and use of cannabis in pregnancy. OUTCOMES: One in five women (19·5%) used cannabis during pregnancy (with or without co-use of tobacco). Within this group of women, 88·3% experienced 3 or more (3+) stressful events or social health issues. Psychological distress (Kessler-5 scale, K-5) in the year postpartum was substantially higher amongst women who had used cannabis or experienced 3+ stressful events or social health issues. High proportions of women met criteria for support and referral for depression and/or anxiety (52·5% of women who had used cannabis compared to 20·9% amongst women who had neither used cannabis nor tobacco; 43·2% of women who had experienced 3+ stressful events or social health issues compared to 15·6% amongst women who had not indicated these experiences). Similar patterns of psychological distress, depressive (9-item adapted Personal Health Questionnaire, aPHQ-9) and anxiety symptoms (7-item Generalised Anxiety Disorder score, GAD-7) were evident when the study children were aged 5-9 years. INTERPRETATION: Amongst women who had used cannabis in pregnancy, a high burden of psychological distress, depression, and anxiety is evident in the postpartum period and as their children turn 5-9 years. The overlay of stressful events and social health issues and the high proportion of women meeting criteria for referral for mental health assessment and support indicate an urgent need to offer women opportunities for safe disclosure of cannabis use and opportunities to access sustained holistic services. Reducing the harms of cannabis use on Aboriginal and Torres Strait Islander families must be coupled with culturally safe ways of addressing the social, historical, and structural determinants of mental health distress and harmful use of substances.


Subject(s)
Marijuana Use , Mental Health , Psychological Distress , Female , Humans , Pregnancy , Australian Aboriginal and Torres Strait Islander Peoples , Cannabis/adverse effects , Life Change Events , Postpartum Period , Marijuana Use/adverse effects
4.
Biochemistry ; 62(20): 2934-2951, 2023 Oct 17.
Article in English | MEDLINE | ID: mdl-37776275

ABSTRACT

γ-herpesviruses (γHVs) encode BCL2 homologues (vBCL2) that bind the Bcl-2 homology 3 domains (BH3Ds) of diverse proteins, inhibiting apoptosis and promoting host cell and virus survival. vBCLs encoded by Kaposi sarcoma-associated HV (KSHV) and γHV68 downregulate autophagy, a degradative cellular process crucial for homeostasis and innate immune responses to pathogens, by binding to a BH3D in BECN1, a key autophagy protein. Epstein-Barr virus (EBV) encodes a vBCL2 called BHRF1. Here we show that unlike the KSHV and γHV68 vBCL2s, BHRF1 does not bind the isolated BECN1 BH3D. We use yeast two-hybrid assays to identify the minimal region of BECN1 required and sufficient for binding BHRF1. We confirm that this is a direct, albeit weak, interaction via affinity pull-down assays and isothermal titration calorimetry. To understand the structural bases of BHRF1 specificity, we determined the 2.6 Šcrystal structure of BHRF1 bound to the BID BH3D, which binds ∼400-times tighter to BHRF1 than does BECN1, and performed a detailed structural comparison with complexes of diverse BH3Ds bound to BHRF1 and to other antiapoptotic BCL2s. Lastly, we used mammalian cell autophagy assays to demonstrate that BHRF1 downregulates autophagy and that a cell-permeable peptide derived from the BID BH3D inhibits BHRF1-mediated downregulation of autophagy. In summary, our results suggest that BHRF1 downregulates autophagy by noncanonical binding of a flexible region of BECN1 that includes but is not limited to the BH3D and that BH3D-derived peptides that bind better to BHRF1 can block downregulation of autophagy by BHRF1.

5.
Article in English | MEDLINE | ID: mdl-37372759

ABSTRACT

Despite longstanding recognition of disparities in Aboriginal and Torres Strait Islander child health, progress to reduce disparities is slow. To improve the capacity of policy makers to target resources, there is an urgent need for epidemiological studies providing prospective data on child health outcomes. We undertook a prospective population-based study of 344 Aboriginal and Torres Strait Islander children born in South Australia. Mothers and caregivers reported on child health conditions, use of health services and the social and familial context of the children. A total of 238 children with a mean age of 6.5 years participated in wave 2 follow-up. Overall, 62.7% of the children experienced one or more physical health conditions in the 12 months prior to wave 2 follow-up, 27.3% experienced a mental health condition and 24.8% experienced a developmental condition. The 12-month period prevalence of physical, developmental and mental health conditions was similar for children living in urban, regional and remote areas. While most children had had at least one visit with a general practitioner, some children experiencing physical, developmental and mental health conditions appear to be missing out on specialist and allied health care. Greater efforts by governments and policy makers are needed to strengthen outreach, recognition, referral and follow-up.


Subject(s)
Australian Aboriginal and Torres Strait Islander Peoples , Health Services, Indigenous , Patient Acceptance of Health Care , Child , Female , Humans , Health Services , Prospective Studies , South Australia/epidemiology
6.
Article in English | MEDLINE | ID: mdl-36901341

ABSTRACT

Indigenous families tend to move house more often, especially families with young children. However, little is known about the impact of high mobility on children's well-being and development. The aim of this systematic review was to examine the relationship between residential mobility and children's health, developmental, and educational outcomes for Australian, Canadian, and New Zealand Indigenous children (0-12 years). Four databases were investigated with pre-determined inclusion and exclusion criteria. The search identified 243 articles after independent screening by two authors. Eight studies assessing four child health outcomes were included, six quantitative and two qualitative. Child health outcomes were classified into four broad categories-physical health, social and emotional behavior, learning and development, and developmental risk. The review identified limited evidence; possible links were identified between high mobility and emotional and behavioral difficulties for younger children. One study identified evidence of a linear relationship between the number of houses a child has lived in since birth and developmental risk. Further research is needed to fully understand the impact of high residential mobility for Indigenous children at different developmental stages. Prioritizing the involvement, collaboration, and empowerment of Indigenous communities and leadership is critical for future research.


Subject(s)
Child Health , Learning , Humans , Child , Child, Preschool , New Zealand , Canada , Australia
7.
BMJ Open ; 12(9): e060229, 2022 09 16.
Article in English | MEDLINE | ID: mdl-36113941

ABSTRACT

OBJECTIVE: Development and testing of a comprehensive and social and culturally inclusive child-report measure of resilience factors supporting positive outcomes in the face of adversity. DESIGN: The measure is based on a socioecological model of resilience and was developed and revised using community-based participatory research methods with Aboriginal and refugee background communities. Pilot testing and validation of the child-report version (Child Resilience Questionnaire-Child report (CRQ- C)) is described in this paper. SETTING: Australia. PARTICIPANTS: Children aged 7-12 years from culturally and socially diverse backgrounds completed the CRQ- C in the pilot (n=387) and validation study (n=775). Families recruited via hospital clinics, Aboriginal and refugee background communities and nested follow-up of participants in an existing cohort study. ANALYSIS: The factor structure and construct validity of CRQ-C scales were assessed using exploratory and confirmatory factor analyses. Preliminary assessment of criterion validity was conducted usinghe Strengths and Difficulties Questionnaire (SDQ). Internal consistency of final scales was assessed using Cronbach's alpha. RESULTS: Conceptually developed CRQ-C was over inclusive of resilience factors and items. Exploratory factor analyses and confirmatory factor analyses supported 10 subscales reflecting personal resilience factors (positive self/future, managing emotions) and connectedness to family, school and culture. Excellent scale reliability (α=0.7-0.9) for all but one scale (Friends, α=0.6). Significant negative correlation between CRQ-C and SDQ total difficulty score supporting criterion validity (rs=-0.317, p<0.001). CONCLUSION: The CRQ-C is a new culturally and socially inclusive self-report measure of resilience factors in childhood, with demonstrated content, construct and scale reliability. Further testing of criterion validity required. Availability of child and parent report CRQ supports broad applications in clinical, research and intervention work. Socially inclusive and culturally appropriate tools are fundamental to create the evidence needed to assess and guide intervention efforts.


Subject(s)
Community-Based Participatory Research , Australia , Cohort Studies , Humans , Psychometrics/methods , Reproducibility of Results , Surveys and Questionnaires
8.
BMJ Open ; 12(8): e059576, 2022 08 25.
Article in English | MEDLINE | ID: mdl-36008073

ABSTRACT

OBJECTIVE: Few studies employ culturally safe approaches to understanding Indigenous women's experiences of intimate partner violence (IPV). The aim of this study was to develop a brief, culturally safe, self-report measure of Aboriginal and Torres Strait Islander women's experiences of different types of IPV. DESIGN: Multistage process to select, adapt and test a modified version of the Australian Composite Abuse Scale using community discussion groups and pretesting. Revised draft measure tested in Wave 2 follow-up of an existing cohort of Aboriginal families. Psychometric testing and revision included assessment of the factor structure, construct validity, scale reliability and acceptability to create the Aboriginal Women's Experiences of Partner Violence Scale (AEPVS). SETTING: South Australia, Australia. PARTICIPANTS: 14 Aboriginal women participated in discussion groups, 58 women participated in pretesting of the draft version of the AEPVS and 216 women participating in the Aboriginal Families Study completed the revised draft version of the adapted measure. RESULTS: The initial version of the AEPVS based on item review and adaptation by the study's Aboriginal Advisory Group comprised 31 items measuring physical, emotional and financial IPV. After feedback from community discussion groups and two rounds of testing, the 18-item AEPVS consists of three subscales representing physical, emotional and financial IPV. All subscales had excellent construct validity and internal consistency. The AEPVS had high acceptability among Aboriginal women participating in the Aboriginal Families Study. CONCLUSIONS: The AEPVS is the first co-designed, multidimensional measure of Aboriginal women's experience of physical, emotional and financial IPV. The measure demonstrated cultural acceptability and construct validity within the setting of an Aboriginal-led, community-based research project. Validation in other settings (eg, primary care) and populations (eg, other Indigenous populations) will need to incorporate processes for community governance and tailoring of research processes to local community contexts.


Subject(s)
Health Services, Indigenous , Intimate Partner Violence , Australia , Birth Cohort , Female , Humans , Indigenous Peoples , Intimate Partner Violence/psychology , Native Hawaiian or Other Pacific Islander , Reproducibility of Results
9.
BMJ Open ; 12(6): e061129, 2022 06 20.
Article in English | MEDLINE | ID: mdl-35725263

ABSTRACT

OBJECTIVE: Develop a comprehensive socially inclusive measure to assess child resilience factors. DESIGN: A socioecological model of resilience, community-based participatory research methods and two rounds of psychometric testing created the Child Resilience Questionnaire (parent/caregiver report, child report, school report). The parent/caregiver report (CRQ-P/C) is the focus of this paper. SETTING: Australia. PARTICIPANTS: Culturally and socially diverse parents/caregivers of children aged 5-12 years completed the CRQ-P/C in the pilot (n=489) and validation study (n=1114). Recruitment via a large tertiary hospital's outpatient clinics, Aboriginal and refugee background communities (Aboriginal and bicultural researchers networks) and nested follow-up of mothers in a pregnancy cohort and a cohort of Aboriginal families. ANALYSIS: Exploratory and confirmatory factor analyses conducted to assess the structure and construct validity of CRQ-P/C subscales. Cronbach's alpha used to assess internal consistency of subscales. Criterion validity assessed with the Strengths and Difficulties Questionnaire (SDQ) parent report. RESULTS: Conceptually developed CRQ comprised 169 items in 19 subscales across five socioecological domains (self, family, friends, school and community). Two rounds of psychometric revision and community consultations created a CRQ-P/C with 43 items in 11 scales: self (positive self, positive future, managing emotions), family (connectedness, guidance, basic needs), school (teacher support, engagement, friends) and culture (connectedness, language). Excellent scale reliability (α=0.7-0.9), except basic needs scale (α=0.61) (where a highly endorsed item was retained for conceptual integrity). Criterion validity was supported: scales had low to moderate negative correlations with SDQ total difficulty score (Rs= -0.2/-0.5. p<0.001); children with emotion/behavioural difficulties had lower CRQ-P/C scores (ß=-14.5, 95% CI -17.5 to -11.6, adjusted for gender). CONCLUSION: The CRQ-P/C is a new multidomain measure of factors supporting resilience in children. It has good psychometric properties and will have broad applications in clinical, educational and research settings. The tool also adds to the few culturally competent measures relevant to Aboriginal and refugee background communities.


Subject(s)
Caregivers , Community-Based Participatory Research , Australia , Child , Humans , Psychometrics , Reproducibility of Results , Surveys and Questionnaires
10.
Trauma Violence Abuse ; 23(2): 567-580, 2022 04.
Article in English | MEDLINE | ID: mdl-33025855

ABSTRACT

Although many Indigenous peoples demonstrate resilience and strength despite the ongoing impact colonization has on their peoples, evidence suggests poor experiences and expectations of health care professionals and access to health care. Health care professionals play an essential role in responding to family violence (FV), yet there is a paucity of evidence detailing Indigenous people's experiences and expectations of health care professionals in the context of FV. Using a meta-synthesis of qualitative studies, this article aims to address the following research question: What are Indigenous people's experiences and expectations of health care professionals when experiencing FV? The inclusion criteria comprised a qualitative study design, Indigenous voices, and a focus on expectations and experiences of health care professionals when FV is experienced. Reviewers independently screened article abstracts, and the findings from included papers were subject to a thematic analysis. Six studies were included in the final meta-synthesis representing studies from Australia, the Americas, and New Zealand. Three themes were identified. Health care professionals need to center the Indigenous person in the care they provide and demonstrate cultural awareness of how history and culture influence an individual's care requirements. Health care professionals also need to ensure they are connecting for trust with the Indigenous person, by slowly developing a rapport, yarning, and investing in the relationship. Finally, Indigenous peoples want their health care professional to work on strengthening safety from culturally inappropriate care, institutional control, and potential lack of confidentiality associated with tight-knit communities.


Subject(s)
Domestic Violence , Indigenous Peoples , Domestic Violence/prevention & control , Health Personnel , Humans , Motivation , Qualitative Research
11.
Article in English | MEDLINE | ID: mdl-34886396

ABSTRACT

While much is known about the health implications of low birthweight for infants and adults, there is limited information about the health implications in childhood, particularly for Indigenous children. The aim of this systematic review was to assess associations between low birthweight (LBW) and/or small for gestational age (SGA) and the developmental, physical or mental health outcomes for Australian, Canadian and New Zealand Indigenous children (5-12 years), including the potential mediating role of cultural connections. The review was guided by an Aboriginal Advisory Group established to guide the Aboriginal Families Study. Four databases were investigated with pre-determined inclusion/exclusion criteria. The search identified 417 articles after independent screening by two authors. Eight studies assessing six child outcomes were included. The review identified limited evidence, although the review suggested possible links between LBW and/or SGA and childhood asthma, lower body mass index (BMI) and poorer academic performance. Links between LBW, SGA and disability, global health and developmental vulnerability were inconclusive. One study identified cultural-based resilience as protective against perinatal adversity. In summary, research on the relationship between adverse birth outcomes and Indigenous children's health and development is limited. Further investigation and collaboration with Indigenous communities is required to drive optimised health and social services responses and equitable system reform.


Subject(s)
Child Health , Adult , Australia/epidemiology , Birth Weight , Canada/epidemiology , Child , Child, Preschool , Female , Gestational Age , Humans , Infant , Infant, Newborn , New Zealand/epidemiology , Pregnancy
12.
J Health Care Poor Underserved ; 32(4): 1844-1871, 2021.
Article in English | MEDLINE | ID: mdl-34803047

ABSTRACT

BACKGROUND: Resilience entails drawing on resources to navigate adversity; few measures exist to explore how children cope with adversity in varying cultural contexts. PURPOSE: We aimed to develop a socially-inclusive measure of child resilience by (1) co-designing methods to engage diverse families, and (2) identifying resilience factors. METHODS: We used a community-based participatory research (CBPR) approach to recruit Aboriginal families, refugee families, and families from hospital outpatient clinics. To triangulate findings and codesign methods, we held discussion groups with 21 service providers. Codesigned group-based visual methods were employed in discussion groups with 97 parents and 106 children (5-12 years). FINDINGS: Participants identified culturally-meaningful resilience factors such as loving family, speaking their home language (for families of Non-English speaking backgrounds). We discuss differences and commonalities across participant groups. CONCLUSION: Co-designing research that is both rigorous and inclusive is critical for gleaning culturally-meaningful data from diverse families.


Subject(s)
Community-Based Participatory Research , Parents , Child , Humans
13.
Rural Remote Health ; 21(2): 6473, 2021 04.
Article in English | MEDLINE | ID: mdl-33887949

ABSTRACT

CONTEXT: This article considers the role of governance in Indigenous medical education research through the lens of an Australian Aboriginal research project titled Healing Conversations. The Healing Conversations project is developing and testing a targeted educational framework for improved clinical communication between healthcare practitioners and Australian Aboriginal peoples in regional and urban locations. It is proposed that an effective governance approach can support Indigenous and non-Indigenous stakeholders to work together in decision-making structures to enable outcomes that promote and prioritise Indigenous worldviews and values in medical education research. ISSUE: The case study explored here puts forth the notion of effective governance as one practical way to decolonise medical education research structures in both the urban and regional setting. The importance of relationships between Indigenous and non-Indigenous stakeholders is supported in tailored governance structures, as knowledge translation efforts are situated in mainstream tertiary education structures that hold collective responsibility and accountability for change in this space. LESSONS LEARNT: Reflections from the Healing Conversations research case study are outlined for future consideration regarding sustainable and effective Indigenous governance initiatives in medical education and research structures. This includes the importance of an Indigenous governance structure within the research team and a strong understanding of the roles and contributions of each research team member, along with the required humanistic qualities to action effective governance in Indigenous medical education research. Collaborative governance structures are fundamental as the inclusion and prioritisation of Indigenous worldviews and values is a key step in redressing Indigenous healthcare disparities and providing culturally safe healthcare institutions.


Subject(s)
Education, Medical , Health Services, Indigenous , Australia , Healthcare Disparities , Humans , Native Hawaiian or Other Pacific Islander , Population Groups
14.
Br J Cardiol ; 28(1): 5, 2021.
Article in English | MEDLINE | ID: mdl-35747477

ABSTRACT

A trial fibrillation (AF) increases cardio-embolic stroke risk, yet AF diagnosis and subsequent prophylactic anticoagulant prescription rates are suboptimal globally. This project aimed to increase AF diagnosis and subsequent anticoagulation prescription rates in East Midlands Clinical Commissioning Groups (CCGs). This service improvement evaluation of the East Midlands AF Advance programme investigated the implementation of mobile AF detection devices (Kardia, AliveCor) into primary-care practices within East Midlands CCGs, along with audit tools and clinician upskilling workshops designed to increase AF diagnosis and anticoagulation prescription rates. AF prevalence and prescription data were collected quarterly from July to September (Q3) 2017/18 to April to June/July to September (Q2/3) 2018/19. AF prevalence increased from 1.9% (22,975 diagnoses) in Q3 2017/18 to 2.4% (24,246 diagnoses) in Q2 2018/19 (p=0.026), while the percentage of high-risk AF patients receiving anticoagulants increased from 80.5% in Q3 2017/18 to 86.9% in Q3 2018/19 (p=0.57), surpassing the Public Health England 2019 target of 85%. The East Midlands AF Advance programme increased AF diagnosis and anticoagulation rates, which is expected to be of significant clinical benefit. The mobile AF detection devices provide a more practical alternative to traditional 12-lead electrocardiograms (ECGs) and should be incorporated into routine clinical practice for opportunistic AF detection, in combination with medication reviews to increase anticoagulant prescription.

15.
BMC Med Res Methodol ; 20(1): 79, 2020 04 10.
Article in English | MEDLINE | ID: mdl-32276606

ABSTRACT

BACKGROUND: The lack of attention to Indigenous epistemologies and, more broadly, Indigenous values in primary research, is mirrored in the standardised critical appraisal tools used to guide evidence-based practice and systematic reviews and meta-syntheses. These critical appraisal tools offer no guidance on how validity or contextual relevance should be assessed for Indigenous populations and cultural contexts. Failure to tailor the research questions, design, analysis, dissemination and knowledge translation to capture understandings that are specific to Indigenous peoples results in research of limited acceptability and benefit and potentially harms Indigenous peoples. A specific Aboriginal and Torres Strait Islander Quality Appraisal Tool is needed to address this gap. METHOD: The Aboriginal and Torres Strait Islander Quality Appraisal Tool (QAT) was developed using a modified Nominal Group and Delphi Techniques and the tool's validity, reliability, and feasibility were assessed over three stages of independent piloting. National and international research guidelines were used as points of reference. Piloting of the Aboriginal and Torres Strait Islander QAT with Aboriginal and Torres Strait Islander and non-Indigenous experts led to refinement of the tool. RESULTS: The Aboriginal and Torres Strait Islander QAT consists of 14 questions that assess the quality of health research from an Aboriginal and Torres Strait Islander perspective. The questions encompass setting appropriate research questions; community engagement and consultation; research leadership and governance; community protocols; intellectual and cultural property rights; the collection and management of research material; Indigenous research paradigms; a strength-based approach to research; the translation of findings into policy and practice; benefits to participants and communities involved; and capacity strengthening and two-way learning. Outcomes from the assessment of the tool's validity, reliability, and feasibility were overall positive. CONCLUSION: This is the first tool to appraise research quality from the perspective of Indigenous peoples. Through the uptake of the Aboriginal and Torres Strait Islander QAT we hope to improve the quality and transparency of research with Aboriginal and Torres Strait Islander peoples, with the potential for greater improvements in Aboriginal and Torres Strait Islander health and wellbeing.


Subject(s)
Health Services Research , Health Services, Indigenous , Australia , Chronic Disease , Health Services Research/standards , Humans , Native Hawaiian or Other Pacific Islander , Reproducibility of Results
16.
BMJ Open ; 9(6): e028397, 2019 06 11.
Article in English | MEDLINE | ID: mdl-31189682

ABSTRACT

INTRODUCTION: Child maltreatment and other traumatic events can have serious long-term physical, social and emotional effects, including a cluster of distress symptoms recognised as 'complex trauma'. Aboriginal and Torres Strait Islander (Aboriginal) people are also affected by legacies of historical trauma and loss. Trauma responses may be triggered during the transition to parenting in the perinatal period. Conversely, becoming a parent offers a unique life-course opportunity for healing and prevention of intergenerational transmission of trauma. This paper outlines a conceptual framework and protocol for an Aboriginal-led, community-based participatory action research (action research) project which aims to co-design safe, acceptable and feasible perinatal awareness, recognition, assessment and support strategies for Aboriginal parents experiencing complex trauma. METHODS AND ANALYSIS: This formative research project is being conducted in three Australian jurisdictions (Northern Territory, South Australia and Victoria) with key stakeholders from all national jurisdictions. Four action research cycles incorporate mixed methods research activities including evidence reviews, parent and service provider discussion groups, development and psychometric evaluation of a recognition and assessment process and drafting proposals for pilot, implementation and evaluation. Reflection and planning stages of four action research cycles will be undertaken in four key stakeholder workshops aligned with the first four Intervention Mapping steps to prepare programme plans. ETHICS AND DISSEMINATION: Ethics and dissemination protocols are consistent with the National Health and Medical Research Council Indigenous Research Excellence criteria of engagement, benefit, transferability and capacity-building. A conceptual framework has been developed to promote the application of core values of safety, trustworthiness, empowerment, collaboration, culture, holism, compassion and reciprocity. These include related principles and accompanying reflective questions to guide research decisions.


Subject(s)
Child Abuse/prevention & control , Community-Based Participatory Research/methods , Health Services, Indigenous , Parents/psychology , Perinatal Care/methods , Program Development/methods , Adult , Australia , Female , Humans , Infant, Newborn , Male , Native Hawaiian or Other Pacific Islander/psychology , Research Design
17.
Women Birth ; 32(5): 404-411, 2019 Oct.
Article in English | MEDLINE | ID: mdl-31202584

ABSTRACT

OBJECTIVE: The aim of this study was to investigate the relationship between perceived discrimination in perinatal care and birth outcomes of women giving birth to an Aboriginal baby in South Australia using methods designed to respect Aboriginal culture and communities. DESIGN AND SETTING: Population-based study of women giving birth to Aboriginal infants in South Australia, July 2011-June 2013. Women completed a structured questionnaire with an Aboriginal researcher. Study measures include: standardised measure of perceived discrimination in perinatal care; maternal smoking, cannabis use and exposure to stressful events and social health issues; infant birthweight and gestation. PARTICIPANTS: 344 women (mean age 25, range 15-43 years) living in urban, regional and remote areas of South Australia. RESULTS: Half of women (51%) perceived that they had experienced discrimination or unfair treatment by hospitals or health services providing care during pregnancy and soon after childbirth. Women experiencing three or more stressful events or social health issues were more likely to perceive that care was discriminatory or unfair. Aboriginal women who perceived that they had experienced discrimination in perinatal care were more likely to have a baby with a low birthweight (Adj Odds Ratio 1.9, 95% CI 1.0-3.8) or small for gestational age (Adj Odds Ratio 1.9, 95% CI 1.0-3.5), adjusting for parity, smoking and cannabis use. CONCLUSIONS: The study provides evidence of the 'inverse care law'. Aboriginal women most at risk of poor infant health outcomes were the least likely to perceive that they received care well matched to their needs. Building stronger evidence about what works to create cultural safety in perinatal health care is an urgent priority.


Subject(s)
Discrimination, Psychological , Healthcare Disparities , Mothers/psychology , Native Hawaiian or Other Pacific Islander/psychology , Native Hawaiian or Other Pacific Islander/statistics & numerical data , Patient Satisfaction/ethnology , Pregnancy Complications/psychology , Quality of Health Care , Stress, Psychological/psychology , Adolescent , Adult , Female , Health Services, Indigenous , Humans , Infant , Infant, Low Birth Weight , Infant, Newborn , Infant, Small for Gestational Age , Maternal Health Services , Postpartum Period/psychology , Pregnancy , Smoking , South Australia , Surveys and Questionnaires , Young Adult
18.
Women Birth ; 32(1): 72-79, 2019 Feb.
Article in English | MEDLINE | ID: mdl-29699794

ABSTRACT

BACKGROUND: Aboriginal women and families are under-represented in Australian research on pregnancy and childbirth. The Aboriginal Families Study aimed to investigate the views and experiences of a representative sample of women giving birth to an Aboriginal baby in South Australia between July 2011 and June 2013, using methods designed to respect Aboriginal culture and communities. METHODS: A team of 12 Aboriginal researchers facilitated community engagement and recruitment of Aboriginal and non-Aboriginal mothers of Aboriginal infants in urban, regional and remote areas of South Australia over a two-year period. RESULTS: A total of 344 women took part, around a quarter of all Aboriginal women giving birth in South Australia in the study period (39% urban, 35% regional and 25% from remote areas). Participants were representative in relation to maternal age (mean age of 25 years, range=15-43 years). Over half of women (56%) first heard about the study via a member of the fieldwork team making contact with them through community connections. Other major sources of recruitment were: Aboriginal health services/programs (20%) and public maternity hospitals (16%). Almost all of the women (95%) recruited via community networks of the fieldwork team completed the questionnaire. In contrast, 51% of women recruited via public hospitals completed the questionnaire (odds ratio=0.1, 95% confidence interval 0.0-0.1, p<0.001). CONCLUSIONS: Aboriginal researchers' community knowledge and leadership is critical to the conduct of successful Aboriginal health research. High levels of participation in research by 'harder to reach' populations are achievable when researchers take time to build relationships and work in partnership with communities.


Subject(s)
Community-Based Participatory Research/statistics & numerical data , Native Hawaiian or Other Pacific Islander/statistics & numerical data , Parturition , Adolescent , Adult , Australia , Female , Hospitals, Public , Humans , Infant , Leadership , Maternal Age , Mothers , Odds Ratio , Pregnancy , Research Personnel/organization & administration , South Australia , Young Adult
19.
Women Birth ; 32(3): e315-e322, 2019 Jun.
Article in English | MEDLINE | ID: mdl-30104173

ABSTRACT

BACKGROUND: Benefits of breastfeeding are well-established. Few studies have examined initiation and duration of breastfeeding of Aboriginal infants. METHODS: Population-based study of women giving birth to an Aboriginal infant in South Australia, July 2011-June 2013. FINDINGS: 344 women took part. Participants were representative in relation to maternal age, infant birthweight and gestation. Eighty-six percent initiated breastfeeding, declining to 54% at 12 weeks postpartum. Women living in remote areas were more likely to be breastfeeding at 12 weeks than women living in Adelaide (Odds Ratio=2.6, 95% Confidence Interval 1.5-4.7). Two-thirds of women (67%) attending standard public antenatal care in regional areas and 61% attending regional Aboriginal Family Birthing Program Services were breastfeeding at 12 weeks, compared to one third of women (36%) attending standard metropolitan public antenatal care and 49% of women attending metropolitan Aboriginal Family Birthing Program Services. Less than half of women (45%) described their postnatal care as 'very good', and 40% were not always able to access support with infant feeding when needed. The most common reasons for switching to formula before 6 weeks were: low milk supply/baby not gaining weight, mastitis/sore breasts or other feeding problems. Mothers also identified their own health as a factor. CONCLUSION: While the findings must be treated with caution due to small numbers, they suggest benefits for women attending Aboriginal Family Birthing Program services in the urban environment where rates of initiation and continued breastfeeding are lowest. Provision of culturally appropriate support to Aboriginal women during and after pregnancy is key to improving outcomes.


Subject(s)
Breast Feeding/statistics & numerical data , Mothers/statistics & numerical data , Native Hawaiian or Other Pacific Islander/statistics & numerical data , Time Factors , Adult , Birth Weight , Breast Feeding/ethnology , Breast Feeding/psychology , Female , Humans , Infant , Infant, Newborn , Maternal Age , Mothers/psychology , Odds Ratio , Pregnancy , Prenatal Care/statistics & numerical data , South Australia
20.
Acta Crystallogr D Struct Biol ; 73(Pt 9): 775-792, 2017 Sep 01.
Article in English | MEDLINE | ID: mdl-28876241

ABSTRACT

Mammalian Golgi-associated plant pathogenesis-related protein 1 (GAPR-1) is a negative autophagy regulator that binds Beclin 1, a key component of the autophagosome nucleation complex. Beclin 1 residues 267-284 are required for binding GAPR-1. Here, sequence analyses, structural modeling, mutagenesis combined with pull-down assays, X-ray crystal structure determination and small-angle X-ray scattering were used to investigate the Beclin 1-GAPR-1 interaction. Five conserved residues line an equatorial GAPR-1 surface groove that is large enough to bind a peptide. A model of a peptide comprising Beclin 1 residues 267-284 docked onto GAPR-1, built using the CABS-dock server, indicates that this peptide binds to this GAPR-1 groove. Mutation of the five conserved residues lining this groove, H54A/E86A/G102K/H103A/N138G, abrogates Beclin 1 binding. The 1.27 Šresolution X-ray crystal structure of this pentad mutant GAPR-1 was determined. Comparison with the wild-type (WT) GAPR-1 structure shows that the equatorial groove of the pentad mutant is shallower and more positively charged, and therefore may not efficiently bind Beclin 1 residues 267-284, which include many hydrophobic residues. Both WT and pentad mutant GAPR-1 crystallize as dimers, and in each case the equatorial groove of one subunit is partially occluded by the other subunit, indicating that dimeric GAPR-1 is unlikely to bind Beclin 1. SAXS analysis of WT and pentad mutant GAPR-1 indicates that in solution the WT forms monomers, while the pentad mutant is primarily dimeric. Thus, changes in the structure of the equatorial groove combined with the improved dimerization of pentad mutant GAPR-1 are likely to abrogate binding to Beclin 1.


Subject(s)
Beclin-1/metabolism , Membrane Proteins/metabolism , Protein Interaction Maps , Amino Acid Sequence , Animals , Autophagy , Beclin-1/chemistry , Binding Sites , Conserved Sequence , Crystallography, X-Ray , Humans , Membrane Proteins/chemistry , Membrane Proteins/genetics , Molecular Docking Simulation , Mutation , Protein Binding , Protein Conformation , Protein Multimerization , Scattering, Small Angle , Sequence Alignment , X-Ray Diffraction
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