RESUMO
Before colonization, Aboriginal and Torres Strait Islander communities had nurturing, holistic, and communitarian approaches that promoted extended and healthy lives for their children. Colonization, marked by policies of genocide and assimilation, has resulted in an alarming overrepresentation of Aboriginal and Torres Strait Islander children under the care of child protection agencies, resulting in compromised health outcomes and reduced life expectancies. We are conducting a study designed to enhance positive developmental outcomes for Aboriginal and Torres Strait Islander children by articulating and enabling the rights of mothers and children to breastfeed in the context of a child protection intervention and child removal. To understand and address this problem, it is critical to implement culturally safe, de-colonized, emancipatory research that is guided by and benefits Aboriginal and Torres Strait Islander communities. This article presents an emancipatory framework that we are applying to our study using an Aboriginal participatory action research approach, that serves as a guide for non-Indigenous researchers seeking to conduct research with Indigenous communities. We emphasize the importance of incorporating an Aboriginal participatory action research framework, using community consultation and codesign; culturally secure data collection methods, and paying attention to Indigenous data sovereignty. Developing trusting respectful relationships is conducive to knowledge acquisition, exchange, and use, when research approaches deeply rooted in community involvement are applied. A call to action by the critical midwifery studies collective, urges non-Indigenous researchers to become accountable allies that demonstrates respect for community leadership while actively striving to ensure research does not perpetuate further harm, and produces effective change. This article provides an overview of ways to conduct ethical emancipatory research with Indigenous participants, that is, of benefit to midwifery practitioners and is applicable to many areas of research, policy, and practice.
RESUMO
Globally, Indigenous children have historical and contemporary connections with government child protection services that have caused significant harm to their long-term health and wellbeing. Innovative, culturally secure and recovery focussed service provision is required. This paper describes a research protocol that has been designed by Indigenous researchers led by Indigenous Elders, to explore culturally secure care planning and service delivery in out-of-home care agencies in Australia. Using participatory action research methods, we will collect data using a variety of forums, including focus groups and semi-structured interviews. These data will explore the challenges for out-of-home care agencies in providing culturally secure care-planning, cultural activity and resources, and explore solutions to address factors that influence health and can assist to redress social inequities for Indigenous children. We aim to recruit approximately 100 participants for the qualitative study and 40 participants for the quantitative survey. Study participants will initially be recruited using purposive sampling, and as the study progresses will be recruited using a mixture of purposive and convenience sampling techniques. The rich data that this study is expected to yield, will inform ways to collect cultural information about Indigenous children and ways to provide cultural connections and activities that will have benefit to Indigenous children and families, and a broad range of social services.
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Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Pesquisa Participativa Baseada na Comunidade , Criança , Feminino , Humanos , Masculino , Austrália , Grupos Focais , Serviços de Saúde do Indígena , Pesquisa Qualitativa , Projetos de PesquisaRESUMO
Fetal alcohol spectrum disorder (FASD) is a lifelong disability of varying severity that occurs among individuals prenatally exposed to alcohol. Among Aboriginal and Torres Strait Islander (Indigenous) Australians, the effects of colonisation and ongoing racism could increase the risk of alcohol consumption during pregnancy. Much of the research and the effort towards prevention of and caring for people with FASD in Indigenous communities has been targeted towards women and children. More support and effort towards prevention of FASD is needed across the whole Indigenous community. In this paper, we discuss several areas for increased involvement by Indigenous men in future FASD research, prevention, care and support.
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Transtornos do Espectro Alcoólico Fetal , Serviços de Saúde do Indígena , Feminino , Humanos , Masculino , Gravidez , Consumo de Bebidas Alcoólicas , Austrália/epidemiologia , Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , LactenteRESUMO
Aboriginal culture intuitively embodies and interconnects the threads of life that are known to be intrinsic to human wellbeing: connection. Therefore, Aboriginal wisdom and practices are inherently strengths-based and healing-informed. Underpinned by an Indigenist research methodology, this article presents findings from a collaboration of Aboriginal and non-Aboriginal peoples to develop an Australian Fetal Alcohol Spectrum Disorder (FASD) Indigenous Framework during 2021 to 2023. The FASD Indigenous Framework unfolds the changes that non-Aboriginal clinicians and Aboriginal peoples each need to make in their respective ways of knowing, being and doing in order to facilitate access to healing-informed, strengths-based and culturally responsive FASD knowledge, assessment, diagnosis and support services among Aboriginal peoples. Drawing on the Aboriginal practices of yarning and Dadirri, written and oral knowledges were gathered. These knowledges were mapped against Aboriginal cultural responsiveness and wellbeing frameworks and collaboratively and iteratively reflected upon throughout. This article brings together Aboriginal wisdom (strengths-based, healing-informed approaches grounded in holistic and integrated support) and Western wisdom (biomedicine and therapeutic models) in relation to FASD. From a place of still awareness (Dadirri), both forms of wisdom were drawn upon to create Australia's first FASD Indigenous Framework, a new practice in the assessment and diagnosis of FASD, which offers immense benefit to equity, justice, support and healing for Aboriginal families with a lived experience of FASD.
Assuntos
Transtornos do Espectro Alcoólico Fetal , Serviços de Saúde do Indígena , Feminino , Gravidez , Humanos , Austrália/epidemiologia , Transtornos do Espectro Alcoólico Fetal/terapia , Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Povos IndígenasRESUMO
In Australia, the number of young people presenting to the emergency department with mental health concerns, in particular, suicidal behaviour (defined here as suicidal ideation, thoughts, intent and attempts) is increasing. Little is known about the experiences of Australian young people who present to hospital emergency departments with suicidal behaviour. In this qualitative study, we conducted a series of focus groups with 55 young people aged 16-25 years, with a view to developing a framework for youth suicide prevention for Western Australia. The data were analysed using a general inductive analysis approach. We explored the experiences and perceptions of the care and management of 35 young people presenting to Western Australian hospital emergency departments. Participants described a range of negative experiences relating to the emergency department environment, staff attitudes and their treatment by staff. We argue that adapting ED practices and approaches to young people presenting with suicidal thoughts and behaviours based on these findings will result in lower rates of repeated presentations and admissions to hospital and lower rates of suicide attempts and deaths by suicide.
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Ideação Suicida , Tentativa de Suicídio , Adolescente , Adulto , Atitude do Pessoal de Saúde , Austrália/epidemiologia , Serviço Hospitalar de Emergência , Humanos , Adulto JovemRESUMO
Little is known about the significance of cultural differences to how caregivers receive a diagnosis of neurodevelopmental disability. As part of a Fetal Alcohol Spectrum Disorder prevalence study among sentenced, detained youth, our qualitative study explored the experiences of diagnostic assessment among detained young people and their caregivers. We present findings from the perspectives of caregivers. In conversation with the sociology of diagnosis literature, we present vignettes of three Aboriginal and two non-Aboriginal caregivers' experiences of the diagnostic assessment process. We found that Aboriginal caregivers conceptualised their children's diagnosis and ongoing management in the context of their family networks and community. In contrast, non-Aboriginal caregivers focused on how the diagnosis would affect their child and interactions with various institutions including healthcare systems and schools. Caregivers' engagement with diagnostic reports and resources also followed cultural lines. Reflections on intergenerational drinking were voiced by Aboriginal caregivers, who expressed shame at receiving diagnosis. These findings advance our appreciation of cultural difference in receiving a diagnosis, the examination of which is in its nascent stages. We also suggest ways to mitigate harm from a stigmatising diagnosis and soften the well-established effects of medical dominance over the process of defining a person's capacity and status.
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Cuidadores , Havaiano Nativo ou Outro Ilhéu do Pacífico , Adolescente , Austrália , Família , Humanos , Pesquisa QualitativaRESUMO
Undertaking research with young people presents an array of methodological challenges. We report the findings from a qualitative study that took place alongside a fetal alcohol spectrum disorder (FASD) prevalence study among detainees in Australia. Of 38 participants, 27 were Aboriginal youth. Interviews were conducted using "social yarning" and "research topic yarning," an Indigenous research method which allows for data collection in an exploratory, culturally safe way. A complex interplay emerged between social yarning and research topic yarning which provided a space to explore responsively with participants their experiences of FASD assessments. Flexibility, including language adaptation and visual descriptions about assessments, was utilized to assist participants recall and retell their experiences. There were, however, challenges in gathering data on the assessment experiences of some participants. We describe how employing a "yarning" method for collecting data could benefit children and young people undergoing neurodevelopmental assessments in the future.
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Coleta de Dados/métodos , Pessoas com Deficiência/psicologia , Transtornos do Espectro Alcoólico Fetal/diagnóstico , Transtornos Mentais/reabilitação , Havaiano Nativo ou Outro Ilhéu do Pacífico/psicologia , Adolescente , Criança , Características Culturais , Feminino , Humanos , Entrevistas como Assunto , Prisões Locais , Masculino , Austrália OcidentalRESUMO
BACKGROUND: Prenatal alcohol exposure (PAE) can result in permanent disability, including physical, neurodevelopmental, and cognitive impairments, known as fetal alcohol spectrum disorder (FASD). Individuals with FASD are more likely to engage with the law, including being placed in detention, than individuals without FASD. Young people who were sentenced to detention participated in a FASD prevalence study in Western Australia. The diagnosis of FASD requires a multidisciplinary assessment and confirmation of maternal alcohol consumption during pregnancy. Obtaining accurate assessment of PAE for young people participating in the study was challenging. METHODS: An interview with the birth mother or other responsible adult for young people sentenced to detention in Western Australia was conducted as part of the FASD assessment. The Alcohol Use Disorders Identification Test consumption subset (AUDIT-C), other relevant questions, and documentary evidence were used to assess PAE. PAE was categorized according to the Australian Guide to the Diagnosis of FASD: no PAE reported, confirmed or confirmed high-risk, or unknown. RESULTS: Among the 101 participants, information on PAE was unable to be obtained for 13 (13%) young people. Of the remaining 88 participants with information of PAE, 41 reported no PAE and 47 had confirmed PAE. CONCLUSIONS: Accurately assessing prenatal alcohol consumption is challenging in any setting, but it is exceptionally challenging when assessed 13 to 17 years retrospectively as part of a FASD assessment for a young person sentenced to detention. Recording and recoding detailed qualitative responses was required to provide an accurate assessment of PAE using the AUDIT-C. Standardized recording of PAE in antenatal and birth records would facilitate later assessments for FASD and provide opportunities for advice and support for women who continue to drink during pregnancy.
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Consumo de Bebidas Alcoólicas/epidemiologia , Confiabilidade dos Dados , Transtornos do Espectro Alcoólico Fetal/diagnóstico , Efeitos Tardios da Exposição Pré-Natal/diagnóstico , Adolescente , Consumo de Bebidas Alcoólicas/efeitos adversos , Criança , Feminino , Humanos , Delinquência Juvenil , Masculino , Mães , Gravidez , Austrália Ocidental/epidemiologiaRESUMO
OBJECTIVES: To estimate the prevalence of fetal alcohol spectrum disorder (FASD) among young people in youth detention in Australia. Neurodevelopmental impairments due to FASD can predispose young people to engagement with the law. Canadian studies identified FASD in 11%-23% of young people in corrective services, but there are no data for Australia. DESIGN: Multidisciplinary assessment of all young people aged 10-17 years 11 months and sentenced to detention in the only youth detention centre in Western Australia, from May 2015 to December 2016. FASD was diagnosed according to the Australian Guide to the Diagnosis of FASD. PARTICIPANTS: 99 young people completed a full assessment (88% of those consented; 60% of the 166 approached to participate); 93% were male and 74% were Aboriginal. FINDINGS: 88 young people (89%) had at least one domain of severe neurodevelopmental impairment, and 36 were diagnosed with FASD, a prevalence of 36% (95% CI 27% to 46%). CONCLUSIONS: This study, in a representative sample of young people in detention in Western Australia, has documented a high prevalence of FASD and severe neurodevelopmental impairment, the majority of which had not been previously identified. These findings highlight the vulnerability of young people, particularly Aboriginal youth, within the justice system and their significant need for improved diagnosis to identify their strengths and difficulties, and to guide and improve their rehabilitation.