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Objectives The current study used a transdiagnostic approach to explore experiences of consumers and professionals on how the process of assessing and diagnosing neurodevelopmental conditions can be improved. Methods Individuals with personal and/or professional experience of this clinical pathway were invited to complete an online survey. A convenience sample of 117 Australian participants provided qualitative data describing how to improve this clinical pathway, including 71 consumers and 53 professionals (seven participants held both roles). Descriptive statistics were used to summarize the characteristics of the participants and two researchers analyzed the qualitative responses using a template approach. Results Participants described a five-stage “journey” spanning before, during and after diagnosis of a neurodevelopmental condition. They progressed through “searching” for an explanation, “waiting” for the diagnostic evaluation, “investigating” the signs and symptoms, “knowing” that their child has a neurodevelopmental condition and “accessing” support. Participants also suggested nine key improvements to this process that were named “awareness” through professional training and empathy, “clearer pathways” through professional checklists and plans, “acceptable timeframes” through reduced local waitlists, “more holistic” through assessment and supports, “more collaboration” through communication with key parties, “stability and consistency” through continuous and coordinated services, “generic community programs” through early needs-based support, “understanding” through meaningful diagnostic disclosure and “addressing their needs” through further targeted supports. Conclusions The findings from this study provide a foundation for future work to improve the diagnostic journey for neurodevelopmental conditions through a collaborative effort between consumers, professionals, researchers and policy makers. These findings highlight the importance of a transdiagnostic and comprehensive clinical pathway that spans the entire journey, where supports are readily available to consumers before, during and after diagnosis. Further research is required to explore the experience of consumers and professionals from more diverse backgrounds, as a limitation of this study was that almost all participants were females and very few identified as belonging to a specific cultural group.

Aboriginal and Torres Strait Islander young people are over-represented in Australian youth detention centres and the justice system. In contrast to deficit-focused approaches to health and justice research, this article engages with the hopes, relationships and educational experiences of 38 detained youth in Western Australia who participated in a study of screening and diagnosis for fetal alcohol spectrum disorder. We report on a qualitative study that used a 'social yarning' approach. While the participants reported lives marred by substance use, crime, trauma and neurodevelopmental disability, they also spoke of strong connections to country and community, their education experiences and their future goals. In line with new efforts for a 'positive youth justice' and extending on models of recovery capital, we argue that we must celebrate success and hope through a process of mapping and building recovery capital in the justice context at an individual and institutional level. Refereed/Peer-reviewed

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.

Following the outbreak of COVID-19, social distancing restrictions limited access to face-to-face mental health services in Western Australia (WA), necessitating a rapid transition to non-face-to-face alternatives, including telehealth. The current study investigated barriers and facilitators to telehealth access and engagement, and preferences for child and youth mental health service delivery during and beyond COVID-19. Three participant groups were recruited via social media and partner organisations, and completed a tailored online survey: i) young people (14–25 years) who had ever accessed or attempted to access mental health support or services (n = 84), ii) parents of young people with a child aged 0–25 years who had ever accessed or attempted to access mental health support or services with or on behalf of their child (n = 68), and iii) professionals working in the child or youth mental health sector (n = 167). Regarding barriers to engagement, young people were primarily concerned with the privacy implications of telehealth and its efficacy relative to face-to-face alternatives. Parents and clinicians were more concerned with the technological pitfalls of telehealth (e.g., internet-connectivity, picture/sound issues). Telehealth’s accessibility was highlighted as a facilitator for all groups. Although certain participant groups were considered to be more suited to telehealth than others, most participants endorsed a blended approach to the future provision of mental health services. To facilitate a blended approach to the delivery of child and youth mental health services, participants recommended more reliable and affordable internet access, implementing funding models that support telehealth delivery, and training for clinical staff. What is already known about this topic:At the time of writing, Western Australia has been fortunate enough to resist a large-scale outbreak of COVID-19, making the state relatively unique in its experience of the pandemic. Despite this, the state has experienced periods of social distancing requirements and associated impact on mental health service provision.Young people have been especially susceptible to mental health decline during the pandemic.Social distancing requirements have necessitated the rapid transition of mental health service provision from face-to-face to non-face-to-face alternatives. At the time of writing, Western Australia has been fortunate enough to resist a large-scale outbreak of COVID-19, making the state relatively unique in its experience of the pandemic. Despite this, the state has experienced periods of social distancing requirements and associated impact on mental health service provision. Young people have been especially susceptible to mental health decline during the pandemic. Social distancing requirements have necessitated the rapid transition of mental health service provision from face-to-face to non-face-to-face alternatives. What this topic adds:Findings from this study provide localised insights into barriers and facilitators to engagement with non-face-to-face service delivery from the perspective of children and young people, carers and mental health professionals.Despite concerns about the relative efficacy of telehealth compared to traditional face-to-face services and challenges with technology, the majority of young people, parents, and mental health professionals in the study felt that moving forwards, child and youth mental health services should be provided using a flexible, blended approach where both face-to-face and non-face-to-face options are available. Findings from this study provide localised insights into barriers and facilitators to engagement with non-face-to-face service delivery from the perspective of children and young people, carers and mental health professionals. Despite concerns about the relative efficacy of telehealth compared to traditional face-to-face services and challenges with technology, the majority of young people, parents, and mental health professionals in the study felt that moving forwards, child and youth mental health services should be provided using a flexible, blended approach where both face-to-face and non-face-to-face options are available.

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.

Little is known about the challenges non-custodial youth detention centre staff face supporting young people with foetal alcohol spectrum disorder (FASD). We undertook qualitative inquiry to identify and describe the perspectives of non-custodial staff detention staff regarding the value of an FASD prevalence study. Data were collected using semi-structured interviews and focus groups and analysed using thematic network analysis. Staff held few concerns about the prevalence study and its impact on participating young people; however, they identified barriers related to study processes, and practices and culture within their workplace, which hindered gaining maximum benefit from the research and its findings. Refereed/Peer-reviewed

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., This study discusses the challenges of assessing prenatal alcohol exposure (PAE) as part of a fetal alcohol spectrum disorder assessment for young people sentenced to detention in Western Australia. PAE was assessed using the AUDIT‐C with the birth mother or another responsible adult who was present during the mother's pregnancy. Recording and recoding detailed qualitative responses was required to provide an accurate assessment of PAE, as recalling prenatal alcohol consumption retrospectively, 13 to 17 years post‐pregnancy, is challenging.

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.

Supplemental material, QHR_SUPPLEMENTAL_FILE for Disability “In-Justice”: The Benefits and Challenges of “Yarning” With Young People Undergoing Diagnostic Assessment for Fetal Alcohol Spectrum Disorder in a Youth Detention Center by Sharynne Hamilton, Tracy Reibel, Sarah Maslen, Rochelle Watkins, Freeman Jacinta, Hayley Passmore, Raewyn Mutch, Melissa O’Donnell, Valerie Braithwaite and Carol Bower in Qualitative Health Research

ObjectivesTo 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.DesignMultidisciplinary 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.Participants99 young people completed a full assessment (88% of those consented; 60% of the 166 approached to participate); 93% were male and 74% were Aboriginal.Findings88 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%).ConclusionsThis 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.

ObjectivesTo describe the comprehensive clinical paediatric assessment of a representative sample of children and adolescents (young people) sentenced to detention in Western Australia (WA) and participating in the first Fetal Alcohol Spectrum Disorder (FASD) prevalence study. SettingsIndividuals with FASD have lifelong difficulties with memory, attention, communication, emotional reg-ulation and social skills with associated risk of engagement with juvenile justice. We found prevalence of FASD in 36% of young people sentenced to juvenile detention in WA. This paper describes the comprehensive clinical paediatric assessment of all young people participating in this study. ParticipantsAll young people aged 10–17 years 11 months and sentenced to detention in WA were eligible. All assess-ments were completed by a multidisciplinary team comprising a speech and language pathologist, occupational therapist, neuropsychologist and a paediatrician. ResultsIn all, 103 young people completed the comprehensive clinical paediatric assessment, with maximum num-ber of males (93%) and Aboriginal Australians (73%). One in two participants reported someone close to them, or themselves, having experienced a frightening event with associated symptoms of post-traumatic stress. One-third (36%) of participants had experienced suicide of a family member. Half of the young people had one or no parent (53%), an incarcerated sibling (44%) or an incarcerated family member (57%). One-fifth of participants talked about experiences of emotional neglect (20%), physical neglect (19%), physical abuse (21%) and suicidal ideation (18%). More than half (60%) of participants were 1 year or more behind their school-year grade according to their chronological age, and 73% reported waking tired. Polysubstance use was common, including cigarettes (82%), marijuana (76%), alcohol (66%) and methamphetamine (36%). Almost two-thirds (64%) had abnormal neuromotor findings, 47% reported head injury without hospitalisation, 38% had prior musculoskeletal injuries, 29% had impaired motor skills and 15% had abnormal visual fields. ConclusionComprehensive clinical paediatric assessment of young people sentenced to detention in WA found signif-icant psychosocial and physical difficulties. The findings of multiple and serious impairments and health issues, through completion of comprehensive clinical paediatric and multidisciplinary health and neuro-developmental assessments for this study, support their routine provision to all young people on entry to systems of juvenile justice.

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. Refereed/Peer-reviewed