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1.
BMJ Open ; 14(6): e080746, 2024 Jun 04.
Article in English | MEDLINE | ID: mdl-38834317

ABSTRACT

INTRODUCTION: Autism is a common neurodevelopmental condition with a complex genetic aetiology that includes contributions from monogenic and polygenic factors. Many autistic people have unmet healthcare needs that could be served by genomics-informed research and clinical trials. The primary aim of the European Autism GEnomics Registry (EAGER) is to establish a registry of participants with a diagnosis of autism or an associated rare genetic condition who have undergone whole-genome sequencing. The registry can facilitate recruitment for future clinical trials and research studies, based on genetic, clinical and phenotypic profiles, as well as participant preferences. The secondary aim of EAGER is to investigate the association between mental and physical health characteristics and participants' genetic profiles. METHODS AND ANALYSIS: EAGER is a European multisite cohort study and registry and is part of the AIMS-2-TRIALS consortium. EAGER was developed with input from the AIMS-2-TRIALS Autism Representatives and representatives from the rare genetic conditions community. 1500 participants with a diagnosis of autism or an associated rare genetic condition will be recruited at 13 sites across 8 countries. Participants will be given a blood or saliva sample for whole-genome sequencing and answer a series of online questionnaires. Participants may also consent to the study to access pre-existing clinical data. Participants will be added to the EAGER registry and data will be shared externally through established AIMS-2-TRIALS mechanisms. ETHICS AND DISSEMINATION: To date, EAGER has received full ethical approval for 11 out of the 13 sites in the UK (REC 23/SC/0022), Germany (S-375/2023), Portugal (CE-085/2023), Spain (HCB/2023/0038, PIC-164-22), Sweden (Dnr 2023-06737-01), Ireland (230907) and Italy (CET_62/2023, CEL-IRCCS OASI/24-01-2024/EM01, EM 2024-13/1032 EAGER). Findings will be disseminated via scientific publications and conferences but also beyond to participants and the wider community (eg, the AIMS-2-TRIALS website, stakeholder meetings, newsletters).


Subject(s)
Autistic Disorder , Genomics , Registries , Whole Genome Sequencing , Humans , Europe , Autistic Disorder/genetics , Cohort Studies , Multicenter Studies as Topic , Research Design , Child , Male
2.
J Anal Toxicol ; 2024 Apr 22.
Article in English | MEDLINE | ID: mdl-38648400

ABSTRACT

The Tennessee Bureau of Investigation (TBI) serves all 95 counties of Tennessee, but the data included in this article is primarily focused in upper east and east Tennessee (the parts of the state included in the eastern time zone). The forensic chemistry [seized drug] unit of the TBI began reporting nitazene analogues in late 2019. The primary analogues found in forensic chemistry cases were isotonitazene and metonitazene. After discussion and review of reporting statistics, the forensic toxicology unit began to monitor for these compounds in toxicology samples by using ions characteristic with the nitazene analogues. Between March 2021 and December 2023, TBI toxicology received 49,639 cases statewide. Of those, 20,105 (40.5%) received toxicology testing. Approximately 95% of TBI toxicology cases are related to DUI/motor vehicle related incidents. Fatal overdoses and cases from the medical examiner office comprise less than 5% of TBI toxicology caseload. The toxicology section utilizes the SCIEX 3200 Qtrap with a SCIEX Exion LC AC autosampler system to monitor MRM transition of nitazene analogues. The ion monitoring for two nitazene analogues, isotonitazene and metonitazene, started in March of 2021. Ion monitoring should not be construed as a confirmed result but rather as an indication that a drug may be present. A comparison of this data from the forensic toxicology and forensic chemistry units revealed the rise of new drugs that required a more in-depth review to understand the magnitude and scope. This article is also intended to encourage collaboration between forensic toxicology and forensic chemistry [seized drug] units.

3.
Autism ; : 13623613231202432, 2023 Oct 26.
Article in English | MEDLINE | ID: mdl-37882480

ABSTRACT

LAY ABSTRACT: Large randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population.

4.
Autism ; : 13623613231205630, 2023 Oct 16.
Article in English | MEDLINE | ID: mdl-37842827

ABSTRACT

LAY ABSTRACT: What do we already know?Autistic people are more likely to have negative life experiences than non-autistic people, from bullying and ostracization, to being victims of crime, to unemployment and homelessness. This includes being victims of intimate partner violence, sexual assault and domestic abuse. Quantitative work has suggested that as many as 90% of autistic people experience these forms of abuse in some form during their lives, but there is little work asking them to talk about harmful relationships in their own words.What does this article add?This article reports on interviews with 24 autistic adults about their experiences of being victims of intimate partner violence, sexual assault and/or domestic abuse. Some of the themes which came from these interviews are shared with non-autistic victims, but others appeared unique to autistic people. One of these was evidence for unique autism-related vulnerabilities, as well as the impact the abuse had on their relationships long term. Participants also talked about how the sex and relationship education they had received had inadequately prepared them for adult relationships, and how this had contributed to their struggle to recognize and react to abusive behaviour.Implications for practice, research and policyPolicies around intimate partner violence and sexual assault need to be updated to account for the different ways in which neurodivergent people (people whose brains process information differently from the majority) may discuss their experiences, rather than looking for 'standard narratives' as an indicator of a need for support. Relationship and sex education should be tailored for autistic young people to help them recognize abusive behaviours, and include how to respond to these safely. We recommend that future research tries to focus specifically on the abuse experiences of autistic men, non-binary and trans people, who have been under-represented in studies to date. In addition, much less is known about the abuse experiences of autistic people of colour or autistic people with intellectual disabilities, who also need to be actively included in these discussions.

5.
Cell ; 186(18): 3747-3752, 2023 08 31.
Article in English | MEDLINE | ID: mdl-37657415

ABSTRACT

A paradigm shift in research culture is required to ease perceived tensions between autistic people and the biomedical research community. As a group of autistic and non-autistic scientists and stakeholders, we contend that through participatory research, we can reject a deficit-based conceptualization of autism while building a shared vision for a neurodiversity-affirmative biomedical research paradigm.


Subject(s)
Autistic Disorder , Biomedical Research , Humans , Biomedical Research/ethics , Behavior , Community-Based Participatory Research
6.
Autism Adulthood ; 5(3): 301-310, 2023 Sep 01.
Article in English | MEDLINE | ID: mdl-37663442

ABSTRACT

Background: The COVID-19 pandemic resulted in large-scale public health restrictions and lockdowns across many countries. There is an increasing literature on the varied impact of such lockdowns in autistic adults. However, there is very little research on how the pandemic and related public health measures may impact the willingness of autistic people in engaging and taking part in research. The aim of this qualitative study was to explore autistic adults' experiences of the COVID-19 lockdown and how the pandemic may affect future research participation. Methods: We conducted in-depth interviews with 31 autistic adults between March and July 2020. Transcripts were analyzed thematically within a critical realism framework. Results: Participants identified positive aspects of lockdown such as enjoying the lack of social pressures and using their well-developed skills for dealing with uncertainty. Autistic people also shared challenges of adjusting to lockdown, for example, rapid change in daily routines. While hopeful about the freedom gained from easing restrictions, participants were concerned about the inconsistent communication and application of rules during the transition out of lockdown. This may have exacerbated already rising mental health issues among autistic people. The participants viewed research participation and engagement with increased relevance during the pandemic and welcomed efforts to conduct research using online methods of communication. Conclusion: The COVID-19 lockdown had a varied effect in the lives and routines of autistic people. However, health care providers and researchers need to be mindful of rising mental health issues in the aftermath of the pandemic, especially for people who were already vulnerable. The response to the pandemic may have offered opportunities for innovation in research processes enabling more autistic people to engage with research and making studies more inclusive.


Why is this an important issue?: We did not know how the pandemic and the strict restrictions that followed would affect autistic people's well-being and mental health.Also, there was a worry that the pandemic would affect the number of volunteers taking part in research that matters the most to autistic people. Thus, it was important to understand any implications for the way we conduct research with the autistic community after the pandemic. What was the purpose of this study?: We explored the experiences of autistic people living through the first 6 months of the COVID-19 lockdown in the United Kingdom. We were particularly interested in autistic people's views on how the pandemic may affect them taking part in research. What did the researchers do?: We co-produced this interview study to answer our research questions. We carried out in-depth interviews with 31 autistic people. We looked for patterns or themes in what the participants said. What were the results of the study?: Autistic people we interviewed reported being able to enjoy a quieter pace of life. They felt less anxious early in the lockdown. But they also faced great challenges adjusting to changes in their daily routines. Inconsistent public health communication caused worry during the transition out of lockdown. Unnecessary stress might have led to worsening of mental health issues in some people. Our participants held positive views on taking part in and engage with research, despite the pandemic. We identified opportunities that could make research more inclusive for autistic people, for example, online methods for taking consent and taking part in research remotely. What do these findings add to what was already known?: Our study adds to the evidence of the varied responses of autistic people to the pandemic and the public health measures that it led to. One important strength of our work is our focus on the impact of the pandemic on research and implications of future research. We learnt that autistic people welcome and value the use of online technology to reach study participants. Wider use of remote technology can make research more inclusive and participatory. What are potential weaknesses in the study?: Many of our participants were already had experience participating in research. Also most had relatively high education levels. We did not include autistic people with intellectual disabilities. We did not collect information on ethnicity. Our sample is likely to have little ethnic diversity. How will these findings help autistic adults now or in the future?: We describe the experiences of autistic people in the face of unprecedented circumstances. We found the need for clear public health communication to avoid unnecessary stress. The pandemic has provided the opportunity for a wider use of remote methods of research, even in areas where this was not done in the past (e.g., clinical trials). Our study found that such approaches would make research more inclusive.

7.
J Pediatr Nurs ; 71: e46-e56, 2023.
Article in English | MEDLINE | ID: mdl-37127476

ABSTRACT

PURPOSE: Although family involvement is critical to successful augmentative and alternative communication (AAC) device utilization, little is known about how families adapt to technology. The aim of this qualitative study was to explore parent-reported factors contributing to family adaptation among families with adolescents diagnosed with autism and/or Down syndrome (DS) utilizing AAC technology. This study describes families' experiences related to several interacting variables of the Resiliency Model, including demand, type, appraisal, resources, and problem-solving/coping, that helped shape the outcome of adaptation to AAC technology. Nurses are well-positioned in a variety of practice settings to assess vulnerable families and assist with identifying resources and navigating complex service systems. DESIGN AND METHODS: Semi-structured interviews were conducted with eight parents of adolescents with autism and/or DS (aged 13-18) recruited through online research registries, support organizations, and a social networking site. Recorded interviews were transcribed, and two independent reviewers coded and analyzed the data. Comparisons across all families' thematic summaries were examined for patterns. RESULTS: Five themes described aspects of family adaptation: Contextual Strains and Influences, Continuum of Person-First Approach, Opening Doors, Facilitators of Support, and Planning Is Key. CONCLUSIONS: Findings highlighted the challenges and demands associated with raising an adolescent using an AAC device, as well as the attributes, resources, perceptions, and strategies that either contributed or hindered family adaptation. PRACTICE IMPLICATIONS: AAC technology is readily available for adolescents with developmental disabilities. It is essential that nurses assess key adaptation components to support families in integrating and using the technology.


Subject(s)
Autistic Disorder , Communication Aids for Disabled , Humans , Adolescent , Parents , Adaptation, Psychological , Communication
8.
J Commun Disord ; 102: 106315, 2023.
Article in English | MEDLINE | ID: mdl-36822146

ABSTRACT

INTRODUCTION: Culturally and linguistically diverse families who have children with complex communication needs (CCN) often have limited access to augmentative and alternative communication (AAC) devices and interventions due to the lack of services that acknowledge their families' cultural and linguistic needs. Despite the increasing need for culturally responsive services, little is known about Chinese-English speaking families' perspectives and experience related to AAC use and services. The objective of this study was to understand the perspectives and experiences of Chinese-English speaking family members of children who use AAC use. METHODS: This study employs a qualitative descriptive methodology approach. The researchers conducted individual or group semi-structured interviews with 10 adult family members (mother, father, and grandparent) from four Chinese-English speaking families in the U.S. and Canada who have a child who uses AAC (ages 3-8). RESULTS: Chinese-English speaking families have high acceptance and satisfaction with their child's AAC as long as they see the benefits of the AAC system. Mothers and siblings play unique roles in supporting home AAC practice given frequent engagement with and observed influence on the child who uses AAC. Family members indicated goals in building stronger family connections, but noted that the child's speech difficulties interfered with this goal. Chinese-English speaking families felt they can overcome limitations resulting from lower English language proficiency, but still find difficulties in obtaining resources because of the Western expectations of advocacy. Additionally, service providers' lack of responsiveness related to family goals could prevent families in obtaining AAC resources. CONCLUSIONS: The findings suggest the need for family-centered services with cultural sensitivity and humility for those serving Chinese-English speaking families with children who use AAC. Additionally, involving family members beyond the mother within services may improve both family functioning and child communication.


Subject(s)
Communication Aids for Disabled , Communication Disorders , Adult , Female , Humans , Child , Child, Preschool , East Asian People , Language , Mothers , Communication , Emotions
9.
Intellect Dev Disabil ; 61(1): 31-48, 2023 02 01.
Article in English | MEDLINE | ID: mdl-36706008

ABSTRACT

Telepractice has become increasingly utilized in disability services, particularly with recent and ongoing measures to slow the spread of the novel coronavirus (COVID-19). In this study, 361 speech-language pathologists (SLPs) responded to a national, web-based survey about their views on utilizing telepractice with children aged 3 to 21 who used aided augmentative and alternative communication (AAC), such as picture symbols or speech-generating devices. The views of SLPs varied, and SLPs who received training on AAC telepractice within the last 12 months had more positive views about telepractice than those who did not. Several factors were associated with when and how SLPs thought telepractice was beneficial to serve children who use aided AAC, including SLPs' foundational perspectives about telepractice, service delivery options, considerations related to the child and family, and broader resources and constraints.


Subject(s)
COVID-19 , Communication Disorders , Intellectual Disability , Humans , Child , Pathologists , Speech , Attitude of Health Personnel , Communication Disorders/therapy , Communication
10.
J Autism Dev Disord ; 53(7): 2587-2599, 2023 Jul.
Article in English | MEDLINE | ID: mdl-35437675

ABSTRACT

Family-centered capacity-building practices have been shown to benefit children and families. However, limited research explores these practices for children who use augmentative and alternative communication. This study explored an intervention to teach family members to implement an Aided Language Modeling (ALM) strategy across natural activities at home. A single case multiple probe design was used to evaluate the intervention with five family members and a girl with autism. Results showed the intervention increased family members' percentage of high-fidelity ALM strategy use and rate of ALM. Descriptively, a modest increase was also observed in the proportion of the child's communication using the speech-generating device. Social validity interviews suggested the goals, procedures, and outcomes were socially valid and supported family capacity building.


Subject(s)
Autism Spectrum Disorder , Communication Aids for Disabled , Communication Disorders , Child , Female , Humans , Family , Language , Communication , Speech Therapy/methods
11.
Musculoskeletal Care ; 21(2): 582-591, 2023 06.
Article in English | MEDLINE | ID: mdl-36349698

ABSTRACT

OBJECTIVE: An estimated 5.5 million people in England have high-impact chronic pain, which is severe pain associated with significant disability. Current models of healthcare often fail to address their broad range of symptoms and address their complex non-medical needs. METHODS: A pilot project was designed with the aim of improving the quality of care and addressing unmet needs of patients high-impact musculoskeletal (MSK) pain through providing a personalised approach to their pain and wider psychosocial needs. The model comprised a longer initial appointment with a general practitioner, a later follow-appointment, and support of the multidisciplinary team (MDT) (informally and through a formal MDT meeting) with both primary care clinicians and specialists based in secondary care. RESULTS: Forty six patients were seen using this model, with prominent themes of consultations including self-management, social needs, mental health and understanding their diagnosis. Evaluation of the pilot demonstrated improvements in MSK and non-MSK symptoms, together with improved patient confidence in self-management and knowledge and understanding of their condition. Multidisciplinary working proved to be invaluable in addressing patients' wider needs but also upskilling and supporting primary care clinicians. Primary care staff also found it to be a satisfying way to care for patients, and developed increasing skills and confidence in supporting patients with chronic pain. CONCLUSION: This model of care appears to be an effective way to help primary care teams to provide more holistic personalised care to a group of patients who are highly complex and so often forgotten.


Subject(s)
Chronic Pain , Fibromyalgia , Musculoskeletal Pain , Humans , Fibromyalgia/therapy , Secondary Care , Chronic Pain/therapy , Pilot Projects , Musculoskeletal Pain/therapy , Primary Health Care
12.
J Intellect Disabil ; 26(4): 919-937, 2022 Dec.
Article in English | MEDLINE | ID: mdl-35898186

ABSTRACT

Perinatal depression/anxiety is a significant concern for mothers of children with Down syndrome. This is influenced by the way the Down syndrome diagnosis is shared with parents. This study examined social media posts from mothers regarding experiences of the birth of their child with Down syndrome. Forty-three total stories were coded using thematic content analysis. Results highlighted the experiences of mother's who received a diagnosis of Down syndrome for their newborn. Two themes were found with relevant subthemes (i.e., receiving the diagnosis-mother's intuition, confirmation of the diagnosis, influence of potential health concerns, initial emotions, impact of the medical professional; Processing the diagnosis-life-altering, child not meeting expectations, reframing the diagnosis, impact of partner and others). Findings highlight the need for medical personnel to understand this identity-changing process, as perinatal depression/anxiety looks different for these mothers. There is also a need to help them engage in services accordingly.


Subject(s)
Down Syndrome , Intellectual Disability , Social Media , Pregnancy , Child , Female , Infant, Newborn , Humans , Mothers/psychology , Emotions , Qualitative Research
13.
Sci Adv ; 8(9): eabl9155, 2022 Mar 04.
Article in English | MEDLINE | ID: mdl-35235355

ABSTRACT

Tropical cyclones drive coastal ecosystem dynamics, and their frequency, intensity, and spatial distribution are predicted to shift with climate change. Patterns of resistance and resilience were synthesized for 4138 ecosystem time series from n = 26 storms occurring between 1985 and 2018 in the Northern Hemisphere to predict how coastal ecosystems will respond to future disturbance regimes. Data were grouped by ecosystems (fresh water, salt water, terrestrial, and wetland) and response categories (biogeochemistry, hydrography, mobile biota, sedentary fauna, and vascular plants). We observed a repeated pattern of trade-offs between resistance and resilience across analyses. These patterns are likely the outcomes of evolutionary adaptation, they conform to disturbance theories, and they indicate that consistent rules may govern ecosystem susceptibility to tropical cyclones.

14.
Lang Speech Hear Serv Sch ; 53(2): 335-359, 2022 04 11.
Article in English | MEDLINE | ID: mdl-35290095

ABSTRACT

PURPOSE: The global COVID-19 pandemic brought about widespread use of telepractice to provide services to children with communication disorders, including students who use aided augmentative and alternative communication (AAC) such as speech-generating devices. This descriptive quantitative study utilized network analysis to investigate the nature of speech-language pathologists' (SLPs') professional resource networks during the pandemic, including what aspects of their professional networks were associated with their confidence to use telepractice to serve students who use aided AAC and whether there were differences for school-based compared to nonschool-based SLPs. METHOD: Participants were 283 SLPs who responded to an online survey that consisted of closed- and open-ended survey items. A resource generator approach was used to gather data about SLPs' professional resource networks for AAC telepractice. RESULTS: SLPs varied widely in their confidence for AAC telepractice. School-based SLPs and SLPs who had 3 years or fewer of AAC experience reported lower confidence, whereas SLPs who spent more work time each week using telepractice and who accessed a greater number of different types of training reported higher confidence. The number of people in different roles providing personal support and the number of different electronic/print resources accessed were not significant predictors of SLPs' confidence. The majority of SLPs wanted additional training, support, or resources related to AAC telepractice. CONCLUSION: The findings from this research suggest the importance of SLPs' access to quality training and support in the areas of AAC and telepractice, particularly for school-based SLPs.


Subject(s)
COVID-19 , Communication Disorders , Speech-Language Pathology , Child , Communication , Humans , Pandemics
15.
HGG Adv ; 3(1): 100074, 2022 Jan 13.
Article in English | MEDLINE | ID: mdl-35047859

ABSTRACT

Robinow syndrome (RS) is a genetically heterogeneous disorder with six genes that converge on the WNT/planar cell polarity (PCP) signaling pathway implicated (DVL1, DVL3, FZD2, NXN, ROR2, and WNT5A). RS is characterized by skeletal dysplasia and distinctive facial and physical characteristics. To further explore the genetic heterogeneity, paralog contribution, and phenotypic variability of RS, we investigated a cohort of 22 individuals clinically diagnosed with RS from 18 unrelated families. Pathogenic or likely pathogenic variants in genes associated with RS or RS phenocopies were identified in all 22 individuals, including the first variant to be reported in DVL2. We retrospectively collected medical records of 16 individuals from this cohort and extracted clinical descriptions from 52 previously published cases. We performed Human Phenotype Ontology (HPO) based quantitative phenotypic analyses to dissect allele-specific phenotypic differences. Individuals with FZD2 variants clustered into two groups with demonstrable phenotypic differences between those with missense and truncating alleles. Probands with biallelic NXN variants clustered together with the majority of probands carrying DVL1, DVL2, and DVL3 variants, demonstrating no phenotypic distinction between the NXN-autosomal recessive and dominant forms of RS. While phenotypically similar diseases on the RS differential matched through HPO analysis, clustering using phenotype similarity score placed RS-associated phenotypes in a unique cluster containing WNT5A, FZD2, and ROR2 apart from non-RS-associated paralogs. Through human phenotype analyses of this RS cohort and OMIM clinical synopses of Mendelian disease, this study begins to tease apart specific biologic roles for non-canonical WNT-pathway proteins.

16.
Dementia (London) ; 21(2): 457-476, 2022 Feb.
Article in English | MEDLINE | ID: mdl-34558340

ABSTRACT

BACKGROUND: Depression in dementia is common and associated with negative health outcomes. Mindfulness-based cognitive therapy is a recommended treatment of choice for recurrent depression, but its use for depression in dementia is yet to be assessed. OBJECTIVE: This study aimed to investigate the experiences of people with depression and dementia who participated in the mindfulness-based cognitive therapy intervention and those of their carers and facilitators. METHODS: This qualitative study was nested within a randomised controlled feasibility study. Semi-structured interviews were conducted with 18 people (eight people with dementia and depression, six carers and four course facilitators). Thematic analysis was used to analyse the data. FINDINGS: Several beneficial effects of mindfulness-based cognitive therapy were described. These were a sense of shared suffering among the group, greater present moment focus and awareness, various positive emotional changes, including greater self-compassion, and benefits for carers, such as the reduction of anxiety. Specific aspects of the programme were identified as particularly useful, including facilitator characteristics and certain mindfulness practices. Carer involvement, cognitive difficulties and barriers to home practice influenced engagement with the course. Facilitators described adaptations made to mindfulness-based cognitive therapy and suggested additional modifications for future groups. CONCLUSION: Results of this process evaluation suggest that mindfulness-based cognitive therapy is a potentially useful intervention for people with depression in dementia, but that further adaptation of the intervention is required to make the programme suitable for this clinical population.


Subject(s)
Cognitive Behavioral Therapy , Dementia , Mindfulness , Caregivers , Dementia/complications , Depression/therapy , Humans
17.
Subst Use Misuse ; 57(1): 21-26, 2022.
Article in English | MEDLINE | ID: mdl-34738494

ABSTRACT

ObjectiveThe emergence of synthetic fentanyl has been a main contributor to North America's rising overdose death rates. While increasing attention has been given to drug-related harm among youth, little is known about how social-structural conditions influence their risk of fentanyl exposure. Therefore, we evaluated potential relationships between social-structural conditions and fentanyl exposure among youth who use illicit drugs in Vancouver, BC. Methods: Data were derived from the At-Risk Youth Study (ARYS), a prospective cohort study. The ARYS cohort involves street-involved youth, who use illicit substances in Vancouver, Canada. A multivariable logic regression analysis model was used to identify social factors associated with recent fentanyl exposure as determined through urine drug screening. Results: Overall, 423 participants were included in this analysis, with 380 (38.23%) testing positive for recent fentanyl exposure. In a multivariable relative risk analysis, living in Vancouver's Downtown Eastside in the last six months (RR = 1.16, 95% CI: 1.03-1.32) and daily heroin injection drug use (RR = 1.31, 95% CI: 1.15 - 1.50) were positively associated with fentanyl exposure. As a secondary measure, we found that within the encounters who denied using fentanyl (92.25% of total encounters), 321 (35.05%) still tested positive. Conclusions: We found that youth residing in Vancouver's Downtown Eastside was positively associated with being exposed to fentanyl. Our findings highlight the need to support youth in finding secure housing outside of Vancouver's drug use epicenter to reduce fentanyl exposure.


Subject(s)
Drug Overdose , Homeless Youth , Illicit Drugs , Adolescent , Canada/epidemiology , Drug Overdose/prevention & control , Fentanyl , Humans , Prospective Studies
18.
Am J Speech Lang Pathol ; 31(1): 303-321, 2022 01 18.
Article in English | MEDLINE | ID: mdl-34905413

ABSTRACT

PURPOSE: The novel coronavirus (COVID-19) pandemic has led to sudden, widespread use of telepractice, including providing services to children who use aided augmentative and alternative communication (AAC). This exploratory study examined speech-language pathologists' (SLPs) experiences using telepractice to provide services to children and youth aged 3-21 years who used aided AAC during the earlier months of the pandemic (May-June 2020). METHOD: Three hundred thirty-one SLPs responded to an online survey. Closed- and open-ended survey items were analyzed quantitatively and qualitatively and mixed at the point of interpretation to understand the experiences of SLPs related to the use of telepractice with children who use aided AAC, including how they perceived effectiveness. RESULTS: Most SLPs were using telepractice to provide both direct and consultation/coaching services to children who used aided AAC. There was fairly wide variation in perceptions of effectiveness of both types of services, but SLPs were more likely to rate consultation/coaching services as being more effective than direct services. SLPs identified factors impacting effectiveness across five dimensions: broader factors, practice-based factors (i.e., technology, the type of services), the child, parents and family members, and professionals. School-based SLPs perceived telepractice as being less effective than non-school-based SLPs. CONCLUSIONS: The use of telepractice during the COVID-19 pandemic has unfolded quite differently for different SLPs and the children who use aided AAC that they serve. Although AAC telepractice offers promise for the future, particularly for partnering with families, further research is needed to know how to overcome challenges experienced by SLPs. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.17139434.


Subject(s)
COVID-19 , Speech-Language Pathology , Adolescent , Child , Humans , Pandemics , Pathologists , SARS-CoV-2 , Speech
19.
Res Dev Disabil ; 120: 104141, 2022 Jan.
Article in English | MEDLINE | ID: mdl-34875549

ABSTRACT

BACKGROUND: School education for children with severe disabilities tends to occur in restricted or segregated settings, especially for students who require augmentative and alternative communication (AAC). AIM: We sought to understand the role played by AAC, especially in supporting students' academic learning and social participation in studies conducted in segregated school settings. METHODS: We conducted a scoping review, searching five databases, supplemented by hand, ancestral and forward citation searches of studies published from 2000 to 2020 involving compulsory school-aged students and featuring AAC. Data were extracted and summarized regarding study and participant characteristics, and key findings. RESULT: Our search yielded 141 studies conducted in a segregated setting (n = 129) or mixed settings (n = 12). Most studies focused on communication skills (n = 69); academic skills (n = 27) and social participation (n = 17) were addressed to a far lesser extent. CONCLUSIONS: Research into students requiring or using AAC has focused on teaching communication skills and far less on academic learning and social activities of classrooms and schools. There is a need for research that extends beyond functional communication into how AAC can promote access to these key aspects of school education.


Subject(s)
Communication Aids for Disabled , Communication Disorders , Child , Communication , Humans , Schools , Students
20.
Front Integr Neurosci ; 15: 647928, 2021.
Article in English | MEDLINE | ID: mdl-33994966

ABSTRACT

This study described the developmental and behavioral characteristics of children identified with idiopathic sensory processing disorder (SPD) as well as the relations among specific types of SPD as proposed by the nosology presented by Miller et al. (2007), adaptive behavior profiles, and behaviors associated with mental functioning. A retrospective, non-experimental design applying descriptive and correlational analyses was used. Data were obtained from clinic medical records of 78 children ages 2 to 7 years who were identified with sensory processing problems affecting daily life, but who did not meet criteria for any other neurodevelopmental or mental disorders following a comprehensive diagnostic evaluation. Results revealed that all SPD types as described by current typologies were well represented with the most common being the over-responsivity sensory modulation subtype. Within the sample, 53% of the children displayed more than one SPD type. Atypical externalizing and internalizing behavior scores associated with various mental disorders as measured by the child behavior checklist (CBCL) fell in the borderline dysfunctional range. Adaptive behavior for all developmental domains was below average, and the severity of SPD symptoms moderately and positively correlated with behaviors associated with mental disorders, and with lower adaptive behavior performance. It was concluded that symptoms characteristic of the various types of idiopathic SPD overlap substantially suggesting that current typologies may include more types/subtypes than are necessary or clinically useful. Children with SPD share similar, but often less severe pathological behaviors associated with other mental or related neurodevelopmental disorders. Psychometrically sound measures of SPD are needed, and further study of the neural mechanisms involved in sensory processing deficits is vital for validating idiopathic SPD as its own diagnostic entity.

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