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One factor potentially driving healthcare and hospital worker (HHW)'s declining mental health during the COVID-19 pandemic is feeling betrayed by institutional leaders, coworkers, and/or others' pandemic-related responses and behaviors. We investigated whether HHWs' betrayal-based moral injury was associated with greater mental distress and post-traumatic stress disorder (PTSD) symptoms related to COVID-19. We also examined if these associations varied between clinical and non-clinical staff. From July 2020 to January 2021, cross-sectional online survey data were collected from 1,066 HHWs serving COVID-19 patients in a large urban US healthcare system. We measured betrayal-based moral injury in three groups: institutional leaders, coworkers/colleagues, and people outside of healthcare. Multivariate logistic regression analyses were performed to investigate whether betrayal-based moral injury was associated with mental distress and PTSD symptoms. Approximately one-third of HHWs reported feeling betrayed by institutional leaders, and/or people outside healthcare. Clinical staff were more likely to report feelings of betrayal than non-clinical staff. For all respondents, 49.5% reported mental distress and 38.2% reported PTSD symptoms. Having any feelings of betrayal increased the odds of mental distress and PTSD symptoms by 2.9 and 3.3 times, respectively. These associations were not significantly different between clinical and non-clinical staff. As health systems seek to enhance support of HHWs, they need to carefully examine institutional structures, accountability, communication, and decision-making patterns that can result in staff feelings of betrayal. Building trust and repairing ruptures with HHWs could prevent potential mental health problems, increase retention, and reduce burnout, while likely improving patient care.
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COVID-19 , Transtornos de Estresse Pós-Traumáticos , Humanos , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Traição , Estudos Transversais , Saúde Mental , Pandemias , Hospitais , Atenção à SaúdeRESUMO
BACKGROUND: Roughly 40% of those with intellectual/developmental disabilities (IDD) have mental health needs, twice the national average. Unfortunately, outpatient mental health services are often inaccessible, increasing reliance on hospital-based services. While telemental health services hold potential to address this gap, little is known about the effectiveness of telemental health for the diversity of persons with IDD, especially as it relates to crisis prevention and intervention services. Accordingly, the aims of this study are to: (1) compare telemental health versus in-person crisis prevention and intervention services among people with IDD; and (2) understand if outcomes vary across subpopulations, in order to identify potential disparities. METHODS: This study will take place within START (Systemic, Therapeutic, Assessment, Resources, and Treatment), a national evidence-based model of mental health crisis prevention and intervention for people with IDD. A total of 500 youth and adults, located across nine states, will be randomized 1:1 to telemental health vs. in-person. Participant inclusion criteria are ages 12-45 years, living in a family setting, and newly enrolled (within 90 days) to START. Outcomes will be assessed, using a non-inferiority design, for up to 1 year or until discharge. The intervention is comprised of four components: (1) outreach; (2) consultation/coping skills; (3) intake/assessment; and, (4) 24-hour crisis response. The in-person condition will deliver all components in-person. The telemental health condition will deliver components 1 & 2, via telephonic or other communication technology, and components 3 & 4 in-person. Outcomes include mental health crisis contacts, mental health symptoms, emergency psychiatric service use, perceived quality of mental healthcare, and time to discharge. DISCUSSION: To our knowledge, this will be the first trial of a telemental health crisis program for the IDD population. The study will be executed by an interdisciplinary team of experts that includes persons with lived experience of disability. Understanding the benefits of specific telemental health methods has important implications to the design of interventions. This telemental health study offers promise to address disparities in access to mental health care for people with IDD across diverse racial, ethnic, linguistic, and cultural groups. TRIAL REGISTRATION: Clinicaltrials.gov ( #NCT05336955 ; Registration Date: 4/20/2022).
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Pessoas com Deficiência , Deficiência Intelectual , Serviços de Saúde Mental , Adolescente , Adulto , Criança , Humanos , Deficiências do Desenvolvimento/terapia , Deficiência Intelectual/terapia , Grupos Raciais , Adulto Jovem , Pessoa de Meia-Idade , Estudos de Equivalência como Asunto , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
OBJECTIVE: While a growing body of evidence suggests youth with autism are at increased risk of experiencing a mental health crisis, no study has screened for crises in an outpatient setting. The current study fills this gap by examining a) the feasibility and utility of conducting routine crisis screenings; b) the psychometrics of a brief crisis screener (the Mental Health Crisis Assessment Scale-Revised; MCAS-R); and, c) the prevalence of and types of behaviors associated with crises. METHOD: This study was conducted at two different outpatient mental health clinics. Screenings were conducted using the MCAS-R, a 23-item parent report measure. A total of 406 youth with autism (76% Male; 72% White; M = 11.2y; SD = 3.5y), evenly divided across clinics, were screened. Seven clinicians conducted a clinical visit, which incorporated the results of the MCAS-R, to determine whether the child was in crisis. RESULTS: Eighty percent of youth were successfully screened, suggesting crisis screening is feasible. Most parents (73%) felt the MCAS-R helped communicate concerns with the clinician; few (<6%) felt the survey was too long or upsetting. All clinicians (100%) indicated that the MCAS-R was very helpful in facilitating communication and identifying/mitigating safety concerns; although, 33% reported screenings "sometimes" interrupted clinical flow. The MCAS-R strongly aligned with clinician ratings (88% correctly classified). Twenty percent of youth met the cutoff for crisis; aggression and self-injurious behaviors were the most common reasons for crises. CONCLUSION: This study suggests that outpatient crisis screening via the MCAS-R is feasible, accurate, and well received by parents and clinicians. ABBREVIATIONS: ASD: Autism Spectrum Disorder; MCAS-R: Mental Health Assessment Crisis Scale-Revised; DSM-5: Diagnostic and Statistical Manual, 5th Edition; ADOS-2: Autism Diagnostic Observation Schedule, Second Edition; ROC: Receiver Operating Curve.
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BACKGROUND: Cross-sectional studies have found that the coronavirus disease 2019 (COVID-19) pandemic has negatively affected population-level mental health. Longitudinal studies are necessary to examine trajectories of change in mental health over time and identify sociodemographic groups at risk for persistent distress. PURPOSE: To examine the trajectories of mental distress between March 10 and August 4, 2020, a key period during the COVID-19 pandemic. METHODS: Participants included 6,901 adults from the nationally representative Understanding America Study, surveyed at baseline between March 10 and 31, 2020, with nine follow-up assessments between April 1 and August 4, 2020. Mixed-effects logistic regression was used to examine the association between date and self-reported mental distress (measured with the four-item Patient Health Questionnaire) among U.S. adults overall and among sociodemographic subgroups defined by sex, age, race/ethnicity, household structure, federal poverty line, and census region. RESULTS: Compared to March 11, the odds of mental distress among U.S. adults overall were 1.84 (95% confidence interval [CI] = 1.65-2.07) times higher on April 1 and 1.92 (95% CI = 1.62-2.28) times higher on May 1; by August 1, the odds of mental distress had returned to levels comparable to March 11 (odds ratio [OR] = 0.80, 95% CI = 0.66-0.96). Females experienced a sharper increase in mental distress between March and May compared to males (females: OR = 2.29, 95% CI = 1.85-2.82; males: OR = 1.53, 95% CI = 1.15-2.02). CONCLUSIONS: These findings highlight the trajectory of mental health symptoms during an unprecedented pandemic, including the identification of populations at risk for sustained mental distress.
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COVID-19/psicologia , Saúde Mental/tendências , Angústia Psicológica , Adulto , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Questionário de Saúde do Paciente , Autorrelato , Fatores Socioeconômicos , Estados Unidos , Adulto JovemRESUMO
Objectives. To assess the impact of the COVID-19 pandemic on mental distress in US adults.Methods. Participants were 5065 adults from the Understanding America Study, a probability-based Internet panel representative of the US adult population. The main exposure was survey completion date (March 10-16, 2020). The outcome was mental distress measured via the 4-item version of the Patient Health Questionnaire.Results. Among states with 50 or more COVID-19 cases as of March 10, each additional day was significantly associated with an 11% increase in the odds of moving up a category of distress (odds ratio = 1.11; 95% confidence interval = 1.01, 1.21; P = .02). Perceptions about the likelihood of getting infected, death from the virus, and steps taken to avoid infecting others were associated with increased mental distress in the model that included all states. Individuals with higher consumption of alcohol or cannabis or with history of depressive symptoms were at significantly higher risk for mental distress.Conclusions. These data suggest that as the COVID-19 pandemic continues, mental distress may continue to increase and should be regularly monitored. Specific populations are at high risk for mental distress, particularly those with preexisting depressive symptoms.
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Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/psicologia , Pandemias , Pneumonia Viral/epidemiologia , Pneumonia Viral/psicologia , Estresse Psicológico/epidemiologia , Adolescente , Adulto , Consumo de Bebidas Alcoólicas/epidemiologia , Betacoronavirus , COVID-19 , Infecções por Coronavirus/etnologia , Depressão/epidemiologia , Feminino , Humanos , Seguro Saúde , Masculino , Fumar Maconha/epidemiologia , Pessoas sem Cobertura de Seguro de Saúde , Pessoa de Meia-Idade , Pneumonia Viral/etnologia , SARS-CoV-2 , Fatores Socioeconômicos , Estados Unidos/epidemiologia , Adulto JovemRESUMO
Most individuals in the United States have no history of a mental health condition yet are at risk for psychological distress due to the COVID-19 pandemic. The objective of this study was to assess the frequency and risk and protective factors of psychological distress, during the beginning of the COVID-19 pandemic, in this group. Data comes from the Pew Research Center's American Trends Panel (ATP), a probability-based online survey panel representative of the US adult population. The analytic sample consisted of 9687 individuals with no prior history of a mental health condition who completed the survey between March 19-24, 2020. Explanatory variables included sociodemographic factors and items related to behavior, perceptions, and experiences surrounding the pandemic. The outcome was psychological distress, measured by five items on symptoms of anxiety, depression, loneliness, sleep difficulties, and hyperarousal. A multivariable linear regression model was used to identify risk and protective factors for psychological distress. Fifteen percent of the sample experienced 2 psychological distress symptoms for at least 3 days over the past week; 13% had three or more symptoms. Risk factors for higher distress included searching online or using social media to post about coronavirus, reporting that the outbreak caused major changes to personal life, and perception that the virus was a threat to the US economy, the individual's personal health or finances. This has important implications for mental health service delivery.
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Betacoronavirus , Infecções por Coronavirus/psicologia , Pneumonia Viral/psicologia , Estresse Psicológico/epidemiologia , Adolescente , Adulto , Idoso , COVID-19 , Infecções por Coronavirus/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pandemias , Pneumonia Viral/epidemiologia , Fatores de Risco , SARS-CoV-2 , Fatores Socioeconômicos , Inquéritos e Questionários , Estados Unidos , Adulto JovemRESUMO
BACKGROUND: Youth with autism spectrum disorder (ASD) exhibit high rates of psychopathology. These symptoms can pose a risk of injury to self or others when the child is in crisis. Despite this danger, there are no instruments available to identify those with ASD who are at risk or actively in crisis. This study examined the psychometric properties of the Mental Health Crisis Assessment Scale (MCAS), a 28 item parent report measure. METHODS: The MCAS was administered to the parents of 606 children and young adults (aged 3-25 years, M age = 13 years, SD = 5 years) enrolled in the Interactive Autism Network, an online registry of families raising a child with ASD. The MCAS asks parents to rate the severity of various emotional and behavioral symptoms exhibited by their child. The parent then selects the behavior they perceive as the most dangerous behavior and rates the acuity of as well as their efficacy in managing this behavior. The MCAS was tested for internal consistency, construct validity, criterion validity, and convergent validity. RESULTS: The MCAS demonstrated strong internal consistency (Total Scale Cronbach's α = .88). The exploratory and confirmatory factor analyses suggested that a two factor (acuity and behavioral efficacy) model fit the data well, providing evidence of construct validity. Criterion validity, which was assessed by comparing the MCAS to clinician determination of crisis, indicated high levels of agreement (ROC = .85). Strong positive relationships emerged between the MCAS and measures of family distress (r = .56), parental stress, and frustration (r = .48), and use of emergency psychiatric services (OR = 24.2, 95% CI: 8.6-68.2), indicating convergent validity of the measure (all p < .05). CONCLUSIONS: Results of the psychometric analyses suggest the MCAS appears to be a promising tool that can measure mental health crises in youth with ASD.
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Transtorno do Espectro Autista/psicologia , Adolescente , Adulto , Fatores Etários , Transtorno do Espectro Autista/complicações , Criança , Pré-Escolar , Emergências , Análise Fatorial , Feminino , Humanos , Masculino , Transtornos Mentais/complicações , Transtornos Mentais/diagnóstico , Transtornos Mentais/psicologia , Psicometria , Reprodutibilidade dos Testes , Adulto JovemRESUMO
OBJECTIVES: Although injuries are a known cause of morbidity and mortality among children and adolescents, little is known about the epidemiology of injury-related emergency department (ED) visits in the United States by injury intent. The objective of this analysis was to examine ED outcomes, defined as death in the ED, inpatient admission, and visit cost, among ED visits stratified by injury intent (i.e., self-harm, assault, and injury with undetermined intent, as compared with unintentional injuries). METHODS: All injury-related ED visits in the United States for children and adolescents, ages 8 to 17 years, were identified using the 2008 Nationwide Emergency Department Sample. Multivariate survey weighted logistic and linear regression analyses were then used to estimate the likelihood of death on ED visit, inpatient admission, and cost across the 4 injury types. RESULTS: In 2008, with the use of weighted estimates, there were 66,895 self-harm, 176,125 assault, 24,144 undetermined injury, and 4,244,589 unintentional injury ED visits among children 8 to 17 years. Visits due to self-harm, assault and undetermined injuries were more likely to result in death during the ED visit compared with visits due to unintentional injuries. Self-harm and undetermined intent were also associated with greater odds of inpatient admission as well as 90% and 60% higher ED visit costs, respectively. CONCLUSIONS: Data from this nationwide sample of pediatric ED visits highlight the resource burden of self-harm, undetermined intent, and assault injury visits. Pediatric EDs may provide a window of opportunity for better case identification and intervention with children experiencing violence and injury.
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Serviço Hospitalar de Emergência/estatística & dados numéricos , Comportamento Autodestrutivo/epidemiologia , Adolescente , Criança , Mortalidade da Criança , Estudos Transversais , Feminino , Humanos , Masculino , Admissão do Paciente/estatística & dados numéricos , Pediatria , Comportamento Autodestrutivo/mortalidade , Inquéritos e Questionários , Estados Unidos/epidemiologiaRESUMO
OBJECTIVES: Children with ADHD commonly exhibit sleep disturbances, but there is limited knowledge about how sleep and sleep timing are associated with cognitive dysfunction in children with ADHD. METHODS: Participants were 350 children aged 5 to 12 years diagnosed with ADHD. Three sleep-related constructs-time in bed, social jetlag (i.e., discrepancy in sleep timing pattern between school nights and weekend nights), and sleep disturbances were measured using a caregiver-report questionnaire. Linear regression models assessed the associations between sleep-related constructs and cognitive performance. RESULTS: After adjustment for sociodemographic variables, there were few associations between time in bed or sleep disturbances and cognitive performance, however, greater social jetlag was negatively associated with processing speed (ß = -.20, 95% CI [-0.35, -0.06]), visually-based reasoning (ß = -.13, 95% CI [-0.27, 0.00]), and language-based reasoning (ß = -.22, 95% CI [-0.36, -0.08]); all p < .05). CONCLUSION: Social jetlag, but not time in bed or disturbances, was associated with lower cognitive performance among children with ADHD.
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Transtorno do Deficit de Atenção com Hiperatividade , Ritmo Circadiano , Humanos , Criança , Transtorno do Deficit de Atenção com Hiperatividade/complicações , Fatores de Tempo , Sono , Síndrome do Jet Lag/complicações , Inquéritos e Questionários , Velocidade de ProcessamentoRESUMO
BACKGROUND: Our team designed an innovative, observation-based motor impairment measure-the Pediatric Stroke Hemiplegic Motor Impairment Scale (Pedi HEMIs). Here we present the results of a survey describing common practices in the pediatric stroke community and the initial psychometric properties of the upper extremity subscale of the Pedi HEMIs (Pedi HEMIs-UE). METHODS: This is a cross-sectional study whereby participants completed a battery of assessments including the novel Pedi HEMIs-UE. Internal consistency was measured via Cronbach alpha (α). Intraclass correlation (ICC) was used to assess inter-rater reliability (IRR). Concurrent validity was investigated using Pearson or polychoric correlations and simple linear regressions. RESULTS: The study sample consisted of 18 children aged 1.08 to 15 years. Two participants completed two sets of evaluations, totaling 20 data sets. Cronbach α, a measure of internal consistency, was on average 0.91 (range: 0.89 to 0.92). IRR was excellent with the six raters in almost perfect agreement (ICC = 0.91; 95% confidence interval [CI]: 0.83 to 0.96). Pearson correlation coefficient between the Pedi HEMIs-UE and logit Assisting Hand Assessment (AHA)/mini-AHA was -0.938 (95% CI: -0.979 to -0.827, P < 0.001), indicating excellent concurrent validity. CONCLUSIONS: We found excellent feasibility, reliability, and validity of the Pedi HEMIs-UE in a convenience sample of youth with hemiparesis after stroke.
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Hemiplegia , Psicometria , Acidente Vascular Cerebral , Extremidade Superior , Humanos , Criança , Adolescente , Psicometria/normas , Psicometria/instrumentação , Masculino , Feminino , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/fisiopatologia , Extremidade Superior/fisiopatologia , Hemiplegia/fisiopatologia , Hemiplegia/diagnóstico , Hemiplegia/etiologia , Estudos Transversais , Pré-Escolar , Reprodutibilidade dos Testes , Lactente , Índice de Gravidade de Doença , Avaliação da DeficiênciaRESUMO
BACKGROUND: Students with intellectual and developmental disabilities (IDD) were disproportionately impacted by the COVID-19 pandemic. This study's goal was to assess the effectiveness of 2 messaging strategies on participation in SARS-CoV-2 weekly testing. METHODS: Cluster randomized trials were conducted at 2 school systems, the special school district (SSD) and Kennedy Krieger Institute (Kennedy) to assess messaging strategies, general versus enhanced, to increase weekly screening for SARS-CoV-2. Testing was offered to staff and students from November 23, 2020 to May 26, 2022. The primary outcomes were percentage of students and staff consented weekly and percentage of study participants who had a test performed weekly. Generalized estimating equation models were utilized to evaluate the primary outcomes. RESULTS: Increases in enrollment and testing occurred during study start up, the beginning of school years, and following surges in both systems. No statistical difference was observed in the primary outcomes between schools receiving standard versus enhanced messaging. IMPLICATIONS FOR SCHOOL HEALTH POLICY, PRACTICE, AND EQUITY: Frequent and consistent communication is vital for families and staff. Weekly screening testing within schools is possible and highlighted the importance of utilizing equitable protocols to provide important testing to students with IDD. CONCLUSION: Enhanced messaging strategies did not increase the number of participants enrolled or the percentage of enrolled participants being tested on a weekly basis.
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Teste para COVID-19 , COVID-19 , Deficiências do Desenvolvimento , Deficiência Intelectual , Humanos , COVID-19/epidemiologia , Deficiências do Desenvolvimento/diagnóstico , Criança , Masculino , Feminino , Adolescente , Teste para COVID-19/métodos , Estudantes/psicologia , SARS-CoV-2 , Serviços de Saúde Escolar , Programas de Rastreamento/métodos , Instituições AcadêmicasRESUMO
Background: Many diagnostic evaluations abruptly shifted to telehealth during the COVID-19 pandemic; however, little is known about the impact on diagnosis patterns for children evaluated for autism spectrum disorder (ASD). The purpose of this clinical research study was to examine (1) the frequency of diagnoses evaluated beyond ASD; (2) the frequency of diagnoses made, including ASD; and (3) clinician diagnostic certainty for all diagnoses evaluated for children who received an evaluation due to primary concerns about ASD via telehealth during the pandemic compared to those evaluated in person before the pandemic at an ASD specialty clinic. Methods: The sample included 2192 children, 1-17 years (M = 6.5 years; SD = 3.9), evaluated by a physician/psychologist at an ASD specialty center. A total of 649 children were evaluated in-person September 1, 2019-March 13, 2020 (pre-pandemic) and 1543 were evaluated via telehealth March 14, 2020-July 26, 2021 (during pandemic). Upon completion of each evaluation, clinicians provided a final diagnostic determination (i.e., "Yes," "No," "Possible," or "Not Assessed") for the following DSM-5 conditions: ASD, attention-deficit/hyperactivity disorder (ADHD), intellectual developmental disorder (IDD), anxiety (ANX), depression (DEP), and behavioral disorder (BD). "Possible" indicated lower certainty and the diagnosis was not provided. "Not Assessed" indicated the disorder was not evaluated. Results: Diagnostic certainty for ASD and ADHD was lower and clinicians evaluated for and made diagnoses of IDD less often during evaluations that occurred via telehealth during the pandemic versus in person before the pandemic. DEP and BD were diagnosed more frequently, diagnostic certainty of DEP was lower, and no differences in the frequency of ANX diagnoses emerged during evaluations conducted via telehealth during the pandemic compared to those conducted in person before the pandemic. Conclusions: Differences emerged in the frequency of diagnoses evaluated and made and diagnostic certainty for evaluations conducted via telehealth during the pandemic compared to in person before the pandemic, which likely impacted patients and reflect real-word challenges. Future work should examine whether these patterns are generalizable and the mechanisms that contribute to these differences.
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Objective: Missed patient appointments have a substantial negative impact on patient care, child health and well-being, and clinic functioning. This study aims to identify health system interface and child/family demographic characteristics as potential predictors of appointment attendance in a pediatric outpatient neuropsychology clinic. Method: Pediatric patients (N = 6,976 across 13,362 scheduled appointments) who attended versus missed scheduled appointments at a large, urban assessment clinic were compared on a broad array of factors extracted from the medical record, and the cumulative impact of significant risk factors was examined. Results: In the final multivariate logistic regression model, health system interface factors that significantly predicted more missed appointments included a higher percentage of previous missed appointments within the broader medical center, missing pre-visit intake paperwork, assessment/testing appointment type, and visit timing relative to the COVID-19 pandemic (i.e. more missed appointments prior to the pandemic). Demographic characteristics that significantly predicted more missed appointments in the final model included Medicaid (medical assistance) insurance and greater neighborhood disadvantage per the Area Deprivation Index (ADI). Waitlist length, referral source, season, format (telehealth vs. in-person), need for interpreter, language, and age were not predictive of appointment attendance. Taken together, 7.75% of patients with zero risk factors missed their appointment, while 22.30% of patients with five risk factors missed their appointment. Conclusions: Pediatric neuropsychology clinics have a unique array of factors that impact successful attendance, and identification of these factors can help inform policies, clinic procedures, and strategies to decrease barriers, and thus increase appointment attendance, in similar settings.
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Neuropsicologia , Pacientes Ambulatoriais , Humanos , Criança , Pandemias , Testes Neuropsicológicos , Agendamento de Consultas , Assistência Médica , DemografiaRESUMO
Background: Studies of positive psychology and emotional well-being have broadened our understanding of mental health. However, mental health research involving autistic adults has been largely deficit-focused. Few studies have examined well-being using established positive psychological frameworks. Methods: This study examined the psychometric characteristics of the PERMA Profiler, a 23-item questionnaire that measures well-being across five subscales (Positive emotion, Engagement, Relationships, Meaning, and Accomplishment), in a sample of 517 autistic adults ages 18-84 years (M = 39.5, standard deviation [SD] = 13.3). Reliability (internal consistency), structural validity (via confirmatory factor analysis including bifactor modeling), and concurrent validity were examined. Results: The PERMA Profiler mean (SD) well-being score was 5.4 (SD = 1.7), which is notably lower than the mean of 7.0 previously found in nonautistic samples. Subscale scores were highest for Engagement (M = 6.8; SD = 1.9), followed by Accomplishment (M = 5.6; SD = 2.2), Relationships (M = 5.2; SD = 2.6), Meaning (M = 5.2; SD = 2.7), and Positive emotion (M = 5.0; SD = 2.4). Factor analyses revealed strong psychometrics (Cronbach's α = 0.93; Comparative Fit Index = 0.94; Tucker-Lewis Index = 0.97; root mean square error of approximation = 0.08; standardized root mean residual = 0.05) and superior fit of the bifactor model, supporting a general factor for conceptualizing well-being as opposed to a five-factor model. PERMA well-being and subscale scores were significantly correlated (p < 0.001) with mental health conditions and life satisfaction. Conclusion: These findings support use of an adapted version of the PERMA Profiler in mental health research to evaluate well-being among autistic adults. Similar to studies with nonautistic populations, the Engagement measure may not capture the experiences of the autistic population and further refinement is needed. Follow-up research should represent a more diverse autistic population, collaborate with autistic coinvestigators, and explore potential correlates of well-being (such as social stigma) while using the PERMA Profiler.
Why is this an important issue?: "Well-being" captures a state of comfort, health, and happiness and is more than just the absence of disease or negative feelings. Only a few studies to date have focused on the emotional well-being of autistic adults. The positive psychology-based PERMA Profiler (named after the five subscales: Positive emotions, Engagement, Relationships, Meaning, and Accomplishment) is a brief self-report measure for rating well-being using 23 questions. It has been widely used for studying well-being in nonautistic populations. However, no studies have tested how well the PERMA Profiler measures well-being among autistic adults. What was the purpose of this study?: The goal was to evaluate the PERMA Profiler using data from a group of autistic adults living in the United States. This was the first study that tested how well the PERMA Profiler measures the well-being of autistic adults, both overall and across the five subscales. What did the researchers do?: First, we collected responses to the PERMA Profiler and other questions from more than 500 autistic adults. Then, we tested whether the PERMA Profiler measures well-being consistently and if the measure performs as expected (i.e., did it measure what it is supposed to measure?). We also compared well-being scores with the mental health (anxiety and depression) and life satisfaction of the study participants. What were the results of the study?: The average overall well-being score was 5.4 out of 10, with higher values indicating experiencing well-being more often. Notably, the average well-being score was 7.0 in unrelated, previous studies of nonautistic adults). The PERMA Profiler measured well-being consistently in our sample. The overall well-being scores and each of the five subscale scores were related to mental health and life satisfaction as expected. The "Engagement" subscale did not perform as well as the others in our sample, which was consistent with the findings of studies with nonautistic adults. What do these findings add to what was already known?: This is the first study to evaluate the effectiveness of the PERMA Profile or any measure of self-reported well-being in a sample of autistic adults. These results can help future researchers determine how best to study well-being, specifically in autistic adults. These findings point to important changes that might be made to the PERMA Profiler before it is used in future research. What are potential weaknesses in the study?: Autistic adults were not involved in the development of the PERMA Profiler. Therefore, the measure may need to be changed by teams involving autistic coinvestigators before use with other samples. Second, our findings may not represent larger, more diverse groups of autistic adults because most participants were White (85%), well-educated (more than 80% completed at least some college), and did not have intellectual disability. Lastly, the study was conducted during the COVID-19 pandemic, which likely impacted the well-being of participants. How will these findings help autistic adults now or in the future?: Our study provides preliminary support for the PERMA Profiler and suggests next steps for improving it and other measures of well-being before expanding use with autistic adults. Our findings may help the field of autism research develop new measures for understanding and improving well-being. The strengths and weaknesses of the PERMA Profiler that we identified can inform future strengths-based research involving autistic adults.
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Gastrointestinal symptoms (GI) are very common among individuals on the autism spectrum. Prior research reports mixed findings regarding whether individuals with autism and co-occurring intellectual disability (ID) have elevated risk of gastrointestinal symptoms relative to individuals with autism alone. GI symptoms can be challenging to assess in individuals with autism spectrum disorder (ASD) and/or ID given challenges with language, communication, and interoception. Prior research has tended to only include individuals with documented presence or absence of GI symptoms or conditions, that is, to exclude observations in which there is uncertainty regarding presence of GI symptoms. Therefore, none of the prior autism studies reported the association between ID and the certainty regarding presence or absence of GI symptoms. The objective of this study was to examine differences in parental certainty and odds of reporting gastrointestinal signs and symptoms among children on the autism spectrum, with and without intellectual disability. Participants were 308 children (36% ID) with a clinical diagnosis of autism spectrum disorder (6-17 years). Parents endorsed whether their child had experienced or displayed a range of signs or symptoms related to GI problems in the past 3 months. Parents of autistic children with ID were less certain about the presence of more subjective symptoms, including abdominal pain, nausea, and bloating. Conversely, certainty regarding more objective signs (e.g., constipation, diarrhea, spitting up, etc.) was not significantly different. More accurate measures for GI signs/symptoms are needed for this population.
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Transtorno do Espectro Autista , Transtorno Autístico , Gastroenteropatias , Deficiência Intelectual , Criança , Humanos , Transtorno Autístico/epidemiologia , Transtorno do Espectro Autista/complicações , Transtorno do Espectro Autista/epidemiologia , Prevalência , Deficiência Intelectual/complicações , Deficiência Intelectual/epidemiologia , Comorbidade , Gastroenteropatias/epidemiologiaRESUMO
BACKGROUND: A prior drug trial of cannabidiol for treatment-resistant epilepsy in patients with Sturge-Weber syndrome (SWS), a rare neurovascular condition, implicated improvements in neurological, quality of life (QOL), neuropsychologic, psychiatric, and motor outcomes. METHODS: Ten subjects with SWS brain involvement, controlled seizures, and cognitive impairments received study drug in this Johns Hopkins institutional review board-approved, open-label, prospective drug trial. Oral cannabidiol was taken for six months (dose ranged from 5 to 20 mg/kg/day). SWS neuroscore, port-wine birthmark score, QOL, and adverse events were recorded every four to 12 weeks. Neuropsychologic, psychiatric, and motor assessments were administered at baseline and six months' follow-up. Most evaluations were conducted virtually due to the coronavirus disease 2019 pandemic. RESULTS: Cannabidiol was generally well tolerated. Six subjects reported mild to moderate side effects related to study drug and continued on drug; one subject withdrew early due to moderate side effects. No seizures were reported. Significant improvements in SWS neuroscore, patient-reported QOL, anxiety and emotional regulation, and report of bimanual ability use were noted. Migraine QOL scores were high at baseline in these subjects, and remained high. Neuropsychologic and other QOL and motor outcomes remained stable, with some within-subject improvements noted. CONCLUSIONS: Further studies are needed to determine whether Epidiolex can improve quality of life and be beneficial for neurological, anxiety, and motor impairments in SWS independent of seizure control. Large multicentered studies are needed to extend these preliminary findings.
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COVID-19 , Canabidiol , Síndrome de Sturge-Weber , Humanos , Canabidiol/farmacologia , Canabidiol/uso terapêutico , Cognição , Qualidade de Vida , Síndrome de Sturge-Weber/complicações , Síndrome de Sturge-Weber/tratamento farmacológico , Síndrome de Sturge-Weber/diagnósticoRESUMO
Schools provide important services that cannot be provided virtually to children with medical complexity and children with intellectual and developmental disabilities, yet these children are among the most at risk from coronavirus disease 2019 (COVID-19). To keep schools open for children with medical complexity and/or intellectual and developmental disabilities during the COVID-19 pandemic, we implemented severe acute respiratory syndrome coronavirus 2 testing at 3 sites across the United States. We evaluated testing strategies for staff and students at each site, including specimen source (nasopharyngeal or saliva), test type (polymerase chain reaction or rapid antigen), and frequency and type (screening versus exposure/symptomatic) of testing provided. Among the greatest barriers to severe acute respiratory syndrome coronavirus 2 testing in these schools was the engagement of caregivers and challenges navigating legal guardianship for consenting adult students. Additionally, variability in testing strategies nationally and in the community, as well as surges in viral transmission across the United States during the course of the pandemic, led to testing hesitancy and variable participation rates. Essential to the successful implementation of testing programs is building a trusted relationship with school administrators and guardians. Leveraging our experiences with COVID-19 and forming lasting school partnerships can help keep schools for vulnerable children safe in future pandemics.
Assuntos
COVID-19 , Crianças com Deficiência , Criança , Adulto , Humanos , Estados Unidos/epidemiologia , SARS-CoV-2 , COVID-19/epidemiologia , Teste para COVID-19 , Pandemias/prevenção & controle , Instituições AcadêmicasRESUMO
OBJECTIVE: Despite a growing literature on mental health among clinical staff during COVID-19, factors shaping distress for nonclinical staff are understudied and may be driven by inequalities at work. We aimed to discuss the role of workplace factors in shaping psychological distress for a diverse group of clinical, nonclinical, and other health and hospital workers (HHWs). METHODS: This convergent parallel mixed-methods study with HHWs in a US hospital system included an online survey ( n = 1127) and interviews ( n = 73) collected from August 2020 to January 2021. We thematically analyzed interviews; findings informed log binomial regression estimating risk factors for severe psychological distress (Patient Health Questionnaire - 4 item version [PHQ-4] scores of 9 or greater). RESULTS: Qualitatively, day-to-day stressors fostered fear and anxiety, and concerns about work environments manifest as betrayal and frustration with leadership. Distress was associated with burnout, financial concerns, and feeling betrayed or unsupported by the institution and leadership. Staff in service versus clinical roles had higher risk for severe distress (adjusted prevalence ratio = 2.04, 95% confidence interval = 1.13-2.66); HHWs receiving workplace mental health support had lower risk (adjusted prevalence ratio = 0.52, 95% confidence interval = 0.29-0.92. CONCLUSIONS: Our mixed-methods study underscores how the pandemic brought inequalities to the surface to increase distress for vulnerable HHWs. Workplace mental health activities can support HHWs now and during future crises.
Assuntos
Esgotamento Profissional , COVID-19 , Angústia Psicológica , Humanos , COVID-19/epidemiologia , Pessoal de Saúde/psicologia , Esgotamento Profissional/psicologia , Fatores de RiscoRESUMO
OBJECTIVE: In April 2021, the US government made substantial investments in students' safe return to school by providing resources for school-based coronavirus disease 2019 (COVID-19) mitigation strategies, including COVID-19 diagnostic testing. However, testing uptake and access among vulnerable children and children with medical complexities remained unclear. METHODS: The Rapid Acceleration of Diagnostics Underserved Populations program was established by the National Institutes of Health to implement and evaluate COVID-19 testing programs in underserved populations. Researchers partnered with schools to implement COVID-19 testing programs. The authors of this study evaluated COVID-19 testing program implementation and enrollment and sought to determine key implementation strategies. A modified Nominal Group Technique was used to survey program leads to identify and rank testing strategies to provide a consensus of high-priority strategies for infectious disease testing in schools for vulnerable children and children with medical complexities. RESULTS: Among the 11 programs responding to the survey, 4 (36%) included prekindergarten and early care education, 8 (73%) worked with socioeconomically disadvantaged populations, and 4 focused on children with developmental disabilities. A total of 81 916 COVID-19 tests were performed. "Adapting testing strategies to meet the needs, preferences, and changing guidelines," "holding regular meetings with school leadership and staff," and "assessing and responding to community needs" were identified as key implementation strategies by program leads. CONCLUSIONS: School-academic partnerships helped provide COVID-19 testing in vulnerable children and children with medical complexities using approaches that met the needs of these populations. Additional work is needed to develop best practices for in-school infectious disease testing in all children.
Assuntos
COVID-19 , Populações Vulneráveis , Criança , Humanos , Teste para COVID-19 , COVID-19/diagnóstico , Instituições Acadêmicas , EstudantesRESUMO
OBJECTIVE: This study aimed to examine the prevalence and characteristics of psychiatry-related emergency department (ED) visits among children with an autism spectrum disorder (ASD), including the specific reason for visit, as well as the influence of insurance type. METHODS: Data used for this cross-sectional, observational study were obtained from the 2008 National Emergency Department Sample, the largest all-payer ED database in the United States. Psychiatry-related visits to the ED among children with ASD were identified using International Classification of Diseases, Ninth Revision, billing codes. A total of 3,974,332 visits (unweighted) were present for youth 3-17 years, of which 13,191 involved a child with ASD. RESULTS: Thirteen percent of visits among children with ASD were due to a psychiatric problem, as compared with 2% of all visits by youths without ASD. Results from the multivariate analyses revealed that the likelihood for a psychiatric ED visit was increased 9-fold (odds ratio [OR], 9.13; 95% confidence interval [CI], 8.61-9.70) among pediatric ASD visits, compared with non-ASD visits. Children with ASD who were covered by private insurance, compared with those with medical assistance, were at even greater risk for a psychiatric ED visit (OR, 1.58; 95% CI, 1.53-1.63). Visits among children with ASD were more likely to be due to externalizing (OR, 1.62; 95% CI, 1.44-1.83) and psychotic (OR, 1.93; 95% CI, 1.58-2.35) disorders compared with visits among non-ASD children. CONCLUSIONS: This study highlights the need for improving community-based psychiatric systems of care for youths with ASD to divert psychiatry-related ED visits, particularly for those children with private insurance.