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1.
Am J Occup Ther ; 77(2)2023 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-36996455

RESUMO

Research has indicated a high prevalence of mental health problems among autistic people, with elevated rates of depression, anxiety, and suicidality. The profession of occupational therapy has its roots in mental health and can offer a unique focus on occupation to support the mental health needs of autistic clients. In this Guest Editorial we introduce articles for this special issue of the American Journal of Occupational Therapy related to autism and mental health and use the Person-Environment-Occupation Model. The articles offer insights into how interactions among person, environment, and occupation factors affect the mental health of autistic populations and demonstrate ways that mental health can be supported through occupational engagement. Opportunities to support the mental health of autistic people include promoting engagement in meaningful activities, supporting individual strengths, and bolstering clients' sense of self and identification with their autistic identity. Future research is needed to uncover and test interventions to support autistic clients and should reflect cultural humility and participatory approaches. We chose to use identity-first language (rather than person-first language) to describe the autistic community in this Guest Editorial out of respect for common community member preferences and in accordance with recommendations for anti-ableist language use (Bottema-Beutel et al., 2021). Decisions about language for each article in this special issue were made by the respective authors.


Assuntos
Transtorno Autístico , Terapia Ocupacional , Humanos , Transtorno Autístico/psicologia , Saúde Mental , Transtornos de Ansiedade , Ansiedade
2.
Am J Occup Ther ; 76(5)2022 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-35900364

RESUMO

In the wake of sociopolitical movements to address health inequities and race-based violence in the United States, there have been calls to take up antiracist practices in the occupational therapy profession. This call aligns with Vision 2025 and requires intentional dialogue and instruction on racism and antiracism, beginning in occupational therapy academic programs. Although it is important to engage in discussions on racism and antiracism, it is equally imperative that members of the profession take action to ameliorate the consequences of racism. In this column, we argue for the need for occupational therapy educators to take immediate action. We provide specific recommendations and strategies to broach these topics, examples of classroom activities, and practical approaches for translating these skills to fieldwork settings. Continued work is needed to establish robust policies and practices to ensure that all occupational therapy program graduates enter the workforce prepared to promote health equity through antiracism.


Assuntos
Promoção da Saúde , Racismo , Humanos , Estados Unidos
3.
Am J Med Genet B Neuropsychiatr Genet ; 189(3-4): 60-73, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-35212135

RESUMO

Suicide accounts for >800,000 deaths annually worldwide; prevention is an urgent public health issue. Identification of risk factors remains challenging due to complexity and heterogeneity. The study of suicide deaths with increased extended familial risk provides an avenue to reduce etiological heterogeneity and explore traits associated with increased genetic liability. Using extensive genealogical records, we identified high-risk families where distant relatedness of suicides implicates genetic risk. We compared phenotypic and polygenic risk score (PRS) data between suicides in high-risk extended families (high familial risk (HFR), n = 1,634), suicides linked to genealogical data not in any high-risk families (low familial risk (LFR), n = 147), and suicides not linked to genealogical data with unknown familial risk (UFR, n = 1,865). HFR suicides were associated with lower age at death (mean = 39.34 years), more suicide attempts, and more PTSD and trauma diagnoses. For PRS tests, we included only suicides with >90% European ancestry and adjusted for residual ancestry effects. HFR suicides showed markedly higher PRS of suicide death (calculated using cross-validation), supporting specific elevation of genetic risk of suicide in this subgroup, and also showed increased PRS of PTSD, suicide attempt, and risk taking. LFR suicides were substantially older at death (mean = 49.10 years), had fewer psychiatric diagnoses of depression and pain, and significantly lower PRS of depression. Results suggest extended familiality and trauma/PTSD may provide specificity in identifying individuals at genetic risk for suicide death, especially among younger ages, and that LFR of suicide warrants further study regarding the contribution of demographic and medical risks.


Assuntos
Predisposição Genética para Doença , Transtornos Mentais , Família , Humanos , Herança Multifatorial/genética , Tentativa de Suicídio/psicologia
4.
Am J Occup Ther ; 75(3)2021 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-34781348

RESUMO

IMPORTANCE: Parents play an essential role in the transition to adulthood for autistic youth, yet often feel they do not have adequate training and resources. OBJECTIVE: To evaluate data on the preliminary efficacy of and collect participant feedback about the Maximizing Adolescent Post-Secondary Success (MAPSS) intervention. DESIGN: Single-group, pretest-posttest pilot study. SETTING: Clinic. PARTICIPANTS: Twenty-two families of autistic youth (ages 13-19 yr, 72.7% male). INTERVENTION: MAPSS is a group intervention for parent-youth dyads that is designed to guide parents in facilitating the development of independent skills for adulthood. Outcomes and Measures: Measures included the Transition Preparation Activities Measure (T-PAM), Family Empowerment Scale (FES), 10-item Perceived Stress Scale (PSS-10), Adulthood Expectations Questionnaire (AEQ), Adaptive Behavior Assessment System-Third Edition (ABAS-3), and a study-specific participant feedback survey. RESULTS: Frequency of transition preparation activities (T-PAM) significantly increased from before to after the intervention, and although the frequency of preparation activities decreased by 1-mo follow-up, it remained significantly higher than at baseline. Parent self-efficacy (FES), parent expectations (AEQ), and parent sense of control over outcomes (AEQ) also significantly increased from preintervention to follow-up; however, parent coping (PSS-10) was unchanged. Youth self-care skills (ABAS-3) demonstrated improvements 6 mo after the completion of the intervention, although other areas of adaptive behavior did not significantly change. Feedback from parents suggested they had positive experiences and felt the intervention was beneficial. CONCLUSIONS AND RELEVANCE: Our data suggest that the MAPSS intervention is an appropriate candidate for larger, controlled clinical trials. What This Article Adds: With additional evidence, this intervention can offer guidelines for occupational therapists to work with autistic youth and their parents to prepare for adulthood.


Assuntos
Transtorno Autístico , Adolescente , Adulto , Feminino , Humanos , Masculino , Pais , Projetos Piloto , Inquéritos e Questionários , Adulto Jovem
5.
Am J Med Genet B Neuropsychiatr Genet ; 186(8): 508-520, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34042246

RESUMO

Identification of genetic factors leading to increased risk of suicide death is critical to combat rising suicide rates, however, only a fraction of the genetic variation influencing risk has been accounted for. To address this limitation, we conducted the first comprehensive analysis of rare genetic variation in suicide death leveraging the largest suicide death biobank, the Utah Suicide Genetic Risk Study (USGRS). We conducted a single-variant association analysis of rare (minor allele frequency <1%) putatively functional single-nucleotide polymorphisms (SNPs) present on the Illumina PsychArray genotyping array in 2,672 USGRS suicide deaths of non-Finnish European (NFE) ancestry and 51,583 NFE controls from the Genome Aggregation Database. Secondary analyses used an independent control sample of 21,324 NFE controls from the Psychiatric Genomics Consortium. Five novel, high-impact, rare SNPs were identified with significant associations with suicide death (SNAPC1, rs75418419; TNKS1BP1, rs143883793; ADGRF5, rs149197213; PER1, rs145053802; and ESS2, rs62223875). 119 suicide decedents carried these high-impact SNPs. Both PER1 and SNAPC1 have other supporting gene-level evidence of suicide risk, and psychiatric associations exist for PER1 (bipolar disorder, schizophrenia), and for TNKS1BP1 and ESS2 (schizophrenia). Three of the genes (PER1, TNKS1BP1, and ADGRF5), together with additional genes implicated by genome-wide association studies on suicidal behavior, showed significant enrichment in immune system, homeostatic and signal transduction processes. No specific diagnostic phenotypes were associated with the subset of suicide deaths with the identified rare variants. These findings suggest an important role for rare variants in suicide risk and implicate genes and gene pathways for targeted replication.


Assuntos
Predisposição Genética para Doença , Suicídio , Estudo de Associação Genômica Ampla , Humanos , Proteínas Nucleares/genética , Proteínas Circadianas Period/genética , Polimorfismo de Nucleotídeo Único , Receptores Acoplados a Proteínas G/genética , Proteína 1 de Ligação a Repetições Teloméricas/genética , Fatores de Transcrição/genética
6.
Am J Occup Ther ; 73(2): 7302205040p1-7302205040p14, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30915965

RESUMO

IMPORTANCE: Children with autism spectrum disorder (ASD) and other developmental disabilities (DD) commonly display unusual responses to sensory input. Previous work has suggested concurrent associations linking sensory features with aspects of family functioning, including activity participation and caregiver strain. What is unknown, however, is the extent to which sensory features affect family functioning over time, as well as the influence of received services on these relationships. OBJECTIVE: To assess hypothesized longitudinal associations between sensory features and family functioning and examine interactions by group and service usage (i.e., educational and therapy services). DESIGN: Multigroup longitudinal observational study. SETTING: Community. PARTICIPANTS: A volunteer sample of 81 children (50 with ASD, 31 with DD; 76% male), ages 2-12 yr, and their caregivers participated in assessments at two points, 3.3 yr apart on average. OUTCOMES AND MEASURES: Key measures included the Sensory Experiences Questionnaire, Sensory Profile, Sensory Processing Assessment for Young Children, Tactile Defensiveness and Discrimination Test-Revised, Caregiver Strain Questionnaire, and Home and Community Activities Scale. We also measured the amount of time children received educational and therapy services. RESULTS: Regression analyses confirmed long-term associations linking sensory features with aspects of activity participation and caregiver strain in this population; group and service usage interactions were also identified. CONCLUSIONS AND RELEVANCE: Sensory features can affect the everyday experiences of both children and caregivers. It is important for practitioners to understand the potentially enduring effects of children's sensory features on family functioning so as to begin to identify supportive interventions with more optimal long-term effects.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Deficiências do Desenvolvimento , Família/psicologia , Adaptação Psicológica , Criança , Pré-Escolar , Feminino , Humanos , Estudos Longitudinais , Masculino
7.
J Vocat Rehabil ; 51(1): 77-86, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-32189959

RESUMO

BACKGROUND: Parent expectations are known to be significant predictors of postsecondary outcomes among youth with disabilities. However, little is known about the relationship between parent and youth expectations and their differential prediction of postsecondary outcomes among youth with disabilities. OBJECTIVE: To determine the relationship between parent and youth expectations among students with disabilities in the United States. METHODS: Through analysis of the National Longitudinal Transition Study-2 (NLTS2), we compared wave two parent and youth expectations across disability categories (N=1,940) and explored the extent to which they predicted youth postsecondary outcomes. RESULTS: We identified that parent and youth expectations are related but significantly different, with parents consistently holding less independent expectations than youth. Both parent and youth expectations were identified as significant predictors of postsecondary outcomes, with youth expectations more strongly predicting education and independent living outcomes, and parent expectations more strongly predicting employment and Social Security benefit outcomes. CONCLUSIONS: Transition providers should work with parents and youth to develop collaborative goals and expectations to best support youth with disabilities for independent activities in adulthood.

8.
Am J Occup Ther ; 71(3): 7103100010p1-7103100010p8, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28422625

RESUMO

OBJECTIVE: This study had a twofold purpose: (1) identify the characteristics of people with disabilities who received occupational therapy services during their transition to adulthood and (2) determine factors associated with their successful postsecondary transition. METHOD: This study was a secondary analysis of National Longitudinal Transition Study-2 data. Data analyses include descriptive statistics, binary logistic regression, and simple linear regression. RESULTS: Autism, cerebral palsy, and intellectual disability were the most commonly reported disability classifications. Participation in postsecondary education was significantly associated with functional use of arms and hands. Postsecondary employment was significantly associated with verbal comprehension. Participation in community activities was significantly related to students' health status, and participation in community service was significantly related to students' functional use of arms and hands. CONCLUSION: Providing transition services to students with disabilities remains an emerging area of practice. Occupational therapy practitioners may contribute to transition teams by intervening to improve functional abilities and health status.


Assuntos
Logro , Transtorno Autístico/reabilitação , Paralisia Cerebral/reabilitação , Emprego , Deficiência Intelectual/reabilitação , Terapia Ocupacional , Estudantes , Feminino , Humanos , Modelos Lineares , Modelos Logísticos , Estudos Longitudinais , Masculino , Participação Social , Adulto Jovem
9.
Am J Occup Ther ; 70(4): 7004360010p1-6, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27294999

RESUMO

Children with autism spectrum disorder often demonstrate unusual behavioral responses to sensory stimuli (i.e., sensory features). To manage everyday activities, caregivers may implement strategies to address these features during family routines. However, investigation of specific strategies used by caregivers is limited by the lack of empirically developed measures. In this study, we describe the development and pilot results of the Caregiver Strategies Inventory (CSI), a supplement to the Sensory Experiences Questionnaire Version 3.0 (SEQ 3.0; Baranek, 2009) that measures caregivers' strategies in response to their children's sensory features. Three conceptually derived and empirically grounded strategy types were tested: cognitive-behavioral, sensory-perceptual, and avoidance. Results indicated that the CSI demonstrated good internal consistency and that strategy use was related to child age and cognition. Moreover, parent feedback after completing the CSI supported its utility and social validity. The CSI may be used alongside the SEQ 3.0 to facilitate a family-centered approach to assessment and intervention planning.


Assuntos
Transtorno do Espectro Autista/enfermagem , Cuidadores , Pais , Transtornos da Percepção/enfermagem , Adolescente , Transtorno do Espectro Autista/psicologia , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Transtornos da Percepção/psicologia , Projetos Piloto , Inquéritos e Questionários
10.
Am J Occup Ther ; 69(3): 6903220010p1-9, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25871592

RESUMO

Sensory interests, repetitions, and seeking behaviors (SIRS) are common among children with autism spectrum disorder (ASD) and other developmental disabilities (DD) and involve unusual actions that intensify or reinforce a sensory experience. Researchers and practitioners typically use parent-report measures or informal clinical observations to understand the presence and nature of SIRS. In this study, we used a scoring supplement to the Sensory Processing Assessment for Young Children, an observational measure, to characterize SIRS across three groups of children-those with ASD (n=40), DD (n=37), and typical development (n=39). Group differences were identified in frequency and intensity of overall SIRS, complexity of SIRS, and incidence of particular types of SIRS (i.e., posturing, sighting, proprioceptive seeking, spinning). Facial affect was also explored and found to be primarily neutral during engagement in SIRS across groups. Implications for practice and future research are discussed.


Assuntos
Transtorno do Espectro Autista/psicologia , Deficiências do Desenvolvimento/psicologia , Sensação , Estudos de Casos e Controles , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Masculino
11.
Autism Res ; 17(5): 898-905, 2024 05.
Artigo em Inglês | MEDLINE | ID: mdl-38429939

RESUMO

Understanding suicide risk is critical for supporting prevention. A growing body of evidence shows autistic people are at greater risk for multiple suicide-related outcomes than non-autistic people. This commentary is in response to an observed pattern of miscommunication in scientific and community spaces about autistic females having higher risk of suicide. However, it is not always clear who they are being compared with in these statements. To address this confusion, we summarize the current population-based evidence on autistic suicide risk, highlighting findings related to sex similarities and differences, which actually indicates comparable rates of suicide death among autistic males and females, and mixed findings related to sex differences in risk of other suicidal behaviors. We call for greater clarity in suicide risk communication moving forward focused on outcomes, measurement, sampling methods, and comparison groups to reflect accurate conclusions about existing evidence. Further research is needed about the full range of suicide-related outcomes for autistic people, including a greater understanding of sex differences as well as potential gender differences to include transgender and nonbinary autistic people. However, studies of sex and gender differences should not overshadow the compelling need for efforts to understand and address the elevated risk of suicidal thoughts, behaviors, and death among autistic people across sex and gender boundaries.


Assuntos
Prevenção do Suicídio , Suicídio , Humanos , Feminino , Suicídio/estatística & dados numéricos , Suicídio/psicologia , Masculino , Transtorno Autístico , Fatores Sexuais , Fatores de Risco
12.
Int J Qual Stud Health Well-being ; 19(1): 2296694, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38213230

RESUMO

PURPOSE: The purpose of this study was to understand the lived experiences of family caregivers who provide care to individuals across a broad range of ages, caregiving relationships, and health conditions and/or disabilities. Family caregiver research is typically siloed by health condition or by caregiving relationship, leaving gaps in understanding similarities and differences among caregivers. METHODS: We hosted three virtual focus groups with diverse family caregivers (n = 26) caring for an individual with a long-term disability and/or health condition(s). We conducted a qualitative thematic analysis using an iterative, inductive process. RESULTS: Participants primarily expressed shared experiences, despite having unique caregiving situations. We identified themes among a) caregiver experiences: Trying to Do It All, Balancing Complex Emotions, Managing Expectations, and Adjusting to Changes Over Time and b) caregiver needs: Longing for Breaks and Self-Care; Lacking Help, Support and Resources; and Desiring Understanding and Recognition. CONCLUSIONS: These findings emphasize that many elements of the caregiving experience transcend care recipient age, condition, and relationship and are applicable to clinicians, researchers, and policy makers. The evidence of shared caregiver experiences can guide efficiencies in policy and practice (e.g., pooling of existing resources, expansion of interventions) to meet the needs of a broader population of caregivers.


Assuntos
Cuidadores , Longevidade , Humanos , Cuidadores/psicologia , Família/psicologia , Emoções , Autocuidado , Pesquisa Qualitativa
13.
Bull Appl Transgend Stud ; 3(1-2): 69-97, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39007095

RESUMO

Trans people are at significantly elevated risk of suicide death, suicide attempts, and suicidal ideation than their cisgender peers. Suicide prevention efforts are needed that address the most important issues to the trans community. In this qualitative study conducted in the United States in 2021, we aimed to broadly explore trans community member perspectives on suicidality and suicide prevention needs. We conducted four virtual focus groups-including one exclusively for trans people of color. We also solicited additional online responses to the same focus group questions. A total of 56 trans individuals with a history of suicidality participated. We utilized reflexive thematic analysis to develop themes to inform suicide prevention efforts for the trans community. The themes were multicontextual, representing needs across healthcare, legal and political arenas, workplaces, community groups, and interpersonal relationships. The central organizing theme identified as crucial for suicide prevention was 'Having (Real) Rights and Respect.' Supporting themes were 'Being in Control of Our Own Bodies,' 'Being Safe as Ourselves,' and 'Feeling Support and Acceptance,' which also included a subtheme of 'Embracing Diversity within the Trans Community.' We provide suggestions and directions for suicide prevention, which build on these themes.

14.
JAMA Netw Open ; 6(10): e2337679, 2023 10 02.
Artigo em Inglês | MEDLINE | ID: mdl-37831452

RESUMO

Importance: People with disability are at heightened risk for suicide ideation, planning, and attempt, with risk growing as the number of disabling limitations increases. Military veterans have higher rates of suicide deaths and disability relative to nonveterans. Objective: To evaluate whether veteran status is associated with greater risk for suicide in those with disability. Design, Setting, and Participants: This survey study used cross-sectional self-reported data from US adults who participated in the 2015-2020 National Survey on Drug Use and Health. Data were weighted to represent the population. Data analysis was conducted from July to August 2022. Main Outcomes and Measures: Suicide ideation, planning, and attempt served as primary outcomes. Disability status (present or absent) and number of disabling limitations (1, 2, or ≥3) served as factors. Veteran status was determined based on self-report (veteran or nonveteran). Multivariable logistic regression examined suicide ideation, planning, and attempt as a function of veteran status and disability variables. Results: Participants included 231 099 US veterans and nonveterans, representing 236 551 727 US adults, of whom 20.03% (weighted n = 47 397 876) reported a disabling limitation, 8.92% were veterans (weighted n = 21 111 727; 16.0% aged 35-49 years; 91.0% men; 6.7% Hispanic; 10.9% non-Hispanic Black; and 78.4% non-Hispanic White) and 91.08% were nonveterans (weighted n = 215 440 000; 25.4% aged 35-49 years; 44.0% male; 16.5% Hispanic; 11.7% non-Hispanic Black; and 63.3% non-Hispanic White). Overall, 4.39% reported suicide ideation, planning, or attempt (weighted n = 10 401 065). Among those with no disability, veteran status was associated with higher risk of suicide planning (adjusted odds ratio [AOR], 1.71; 95% CI, 1.17-2.49). Among those with 1 or 2 disabling limitations, being a veteran was associated with a lower risk of suicide planning (AOR, 0.57; 95% CI, 0.34-0.95) and history of attempt (AOR, 0.46; 95% CI, 0.24-0.88). Conclusions and Relevance: In this study of how suicide risk differs as a function of disability and veteran status, risk for death by suicide was lower among veterans with disability relative to nonveterans with disability. Veteran status may mitigate risk for suicide given increased receipt of more disability-related care through the Department of Veterans Affairs. Further research would extend this line of inquiry by examining the cause and type of disability as well as perceptions of disability on self-worth. It is possible that physical wounds of war are protective because of the meaning and value of service to one's country.


Assuntos
Pessoas com Deficiência , Veteranos , Adulto , Humanos , Masculino , Feminino , Estudos Transversais , Fatores de Risco , Ideação Suicida
15.
Pediatrics ; 152(1)2023 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-37345494

RESUMO

OBJECTIVES: The study objectives were to examine the contents of individualized education programs (IEPs) of adolescents with autism spectrum disorder (ASD), including postsecondary transition goals, services, and changes in special education classification over time. METHODS: This study involved a longitudinal population-based surveillance cohort from the Autism Developmental Disabilities Monitoring Network from 2002 to 2018 in 3 catchment areas in the United States. The sample included 322 adolescents who were born in 2002, identified with ASD, and had an IEP available for review at ages 15-16 years. RESULTS: We found that 297 (92%) adolescents with ASD had an IEP including a transition plan. Those without intellectual disability (ID) were more likely to have postsecondary education and employment goals and have those goals be to pursue higher education or competitive employment compared with those with ID. Forty-one percent of adolescents with ASD had a postsecondary living arrangement goal. Although 28% of adolescents with ASD received school-based mental health services, none of these adolescents were Black; additionally, 15% of those with ID received mental health services compared with 34% without ID. The percentage of adolescents with ASD served under an autism classification increased from 44% at age 8 years to 62% by age 16. CONCLUSIONS: We identified gaps and disparities in school-based postsecondary transition planning. Working with education partners, families, and adolescents will be important to identify what challenges contribute to these findings and what supports are needed to improve the equity and quality of the transition planning process for adolescents with ASD so they are prepared for adulthood.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Deficiência Intelectual , Humanos , Adolescente , Estados Unidos , Adulto Jovem , Adulto , Criança , Transtorno do Espectro Autista/terapia , Transtorno do Espectro Autista/epidemiologia , Educação Inclusiva , Vigilância da População , Emprego
16.
J Autism Dev Disord ; 52(9): 4044-4055, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-34528163

RESUMO

Knowledge is needed about specific supports and barriers for successful transitions to adulthood for autistic youth, especially from the perspective of parents, who are highly involved in transition preparation. We conducted a qualitative thematic analysis of previously conducted semi-structured interviews with 39 parents of 41 autistic adolescents to identify themes related to supports and barriers; we then used Bronfenbrenner's Ecological System's Theory to aid in interpreting the themes. We identified three main supports and four main barriers to the transition to adulthood from the parent interviews. The supports and barriers represent factors to consider at each theorized ecological level. Results point to opportunities to promote person-environment fit and support the transition to adulthood for autistic youth at multiple system levels.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Adolescente , Adulto , Humanos , Pais , Pesquisa Qualitativa
17.
Disabil Rehabil ; 44(19): 5592-5602, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-34251954

RESUMO

PURPOSE: To explore the processes of community reintegration of children and families at least one year following a paediatric brain injury from the perspective of caregivers and outpatient/community service providers. MATERIALS AND METHODS: A qualitative analysis of semi-structured interviews from outpatient or community service providers (N = 14; occupational, physical, and speech and language therapists, neuropsychologists, school counsellors, recreational providers) and caregivers of six children (N = 8) at least one year after their injury. Interviews were transcribed and thematically coded using deductive (employing Bronfenbrenner's ecological systems theory) and inductive approaches. RESULTS: Themes from both providers and caregivers indicated additional supports needed at all levels of Bronfenbrenner's ecological systems theory (i.e., individual, microsystem, mesosystem/exosystem, macrosystem, chronosystem). Participants felt that several characteristics would be needed in an ideal service system following paediatric brain injury including: community solutions ("it takes a village"), long-term approaches to care, and new financial approaches. CONCLUSIONS: The results suggest that children and families have substantial community reintegration needs following paediatric brain injury. Multi-system interventions are needed to support long-term community reintegration, especially those that increase communication and support transitions. There is also a strong need for alternative funding to support these efforts.Implications for RehabilitationFamilies with a child with a moderate to severe brain injury face challenges with community reintegration a year or more after their child's injury.Effort should be put into helping families navigate the complex medical, insurance, and school systems with a navigator service and step-down care to ensure a continuum of care and to support community reintegration.Special support should be provided during transitions, such as transitions from hospital care to outpatient care, and across school transitions.


Assuntos
Lesões Encefálicas , Cuidadores , Criança , Comunicação , Família , Necessidades e Demandas de Serviços de Saúde , Humanos , Pesquisa Qualitativa
18.
Autism Adulthood ; 4(1): 32-41, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35663130

RESUMO

Introduction: The expectations individuals hold about the future can influence the decisions they make toward achieving their goals. Existing research suggests parents of autistic adolescents hold expectations about the future that are significantly related to the postsecondary outcomes they achieve. However, less research exists about the adolescents' own expectations and the extent to which autistic adolescents and their parents agree about the future. Methods: We used a scoring procedure to "quantitize" semi-structured interview data about what 46 adolescent-parent dyads envisioned for the future of the autistic adolescent across three areas of adulthood (postsecondary education, employment, and living situation). Adolescents ranged in age from 13-19 years (85.1% male) and were able to participate in a verbal interview. We scored the dyads' interviews on the extent to which they agreed or disagreed about the postsecondary future of the adolescent, as well as whose expectations were higher (when they differed). Results: Proportions of agreement and disagreement did not significantly differ, demonstrating moderate agreement. Notably, fewer than half (37.0-47.8%) of adolescents and their parents partly or strongly agreed about their visions for the future in each of the three areas. Only 17.4% of dyads partly or strongly agreed across all three areas, and 23.9% did not agree in any area. When adolescents' and parents' views differed, adolescents were significantly more likely to have a higher expectation across all three areas (ps < 0.01). Conclusions: Future research is needed to examine differences in autistic adolescents' and parents' visions of the future, and to explore interventions to support families to work toward shared goals for the future. This study contributes to a growing body of literature emphasizing the importance of including the perspectives of autistic adolescents in research and for them to have an active and substantial role in their own transition planning.

19.
J Psychiatr Res ; 153: 213-222, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35841817

RESUMO

While research on suicidal behavior for people with disability (PWD) suggests they experience higher risk than people without disability, less is known about variations among individuals with different disability types. This nationally representative, cross-sectional study compared differences in suicide-related outcomes (ideation, planning, attempts) among PWD by functional disability type (hearing, vision, cognitive, mobility, complex activity) and number. Secondary analysis of adult PWD in the 2015-2019 National Survey on Drug Use and Health (unweighted N = 35,544; representing 47,723,378 PWD, weighted) was used to estimate relationships between suicide-related outcomes and disability type and number. Most respondents were female (55.9%), and 36.0% were aged ≥65 years. Adjusted odds ratios (AORs) from multivariable logistic regression indicated that suicidal ideation and suicide attempt, respectively, were significantly more likely among individuals with cognitive (AOR = 1.71, 95% CI = 1.24-2.35; AOR = 2.54, 95% CI = 1.31-4.91), complex activity (AOR = 1.96, 95% CI = 1.37-2.81; AOR = 2.67, 95% CI = 1.32-5.41), and ≥2 limitations (AOR = 2.02, 95% CI = 1.52-2.69; AOR = 3.46, 95% CI = 1.84-6.50) than hearing limitation. Also, relative to other disability types, suicide-related outcomes were significantly more likely among individuals with cognitive limitation and complex activity limitation (p < 0.001). Additionally, suicide-related outcomes elevated in likelihood as the number of limitations increased, with the largest associations among those with ≥5 limitations for suicidal ideation (AOR = 2.31, 95% CI = 1.46-3.66), suicide planning (AOR = 3.34, 95% CI = 1.97-5.68), and suicide attempt (AOR = 6.37, 95% CI = 3.76-10.79). Subgroup analyses showed that presence of cognitive limitation and multiple limitations differentiated between suicidal ideators and suicide attempters. Further research is needed to identify causes of these risks and develop suicide prevention efforts for these particularly vulnerable groups.


Assuntos
Pessoas com Deficiência , Transtornos Relacionados ao Uso de Substâncias , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Fatores de Risco , Transtornos Relacionados ao Uso de Substâncias/epidemiologia , Ideação Suicida , Tentativa de Suicídio
20.
Autism Res ; 15(4): 751-760, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-35040592

RESUMO

Sensory features (i.e., atypical responses to sensory stimuli) are included in the current diagnostic criteria for autism spectrum disorder. Yet, large population-based studies have not examined these features. This study aimed to determine the prevalence of sensory features among autistic children, and examine associations between sensory features, demographics, and co-occurring problems in other areas. Analysis for this study included a sample comprised of 25,627 four- or eight-year-old autistic children identified through the multistate Autism and Developmental Disabilities Monitoring Network (2006-2014). We calculated the prevalence of sensory features and applied multilevel logistic regression modeling. The majority (74%; 95% confidence interval: 73.5%-74.5%) of the children studied had documented sensory features. In a multivariable model, children who were male and those whose mothers had more years of education had higher odds of documented sensory features. Children from several racial and ethnic minority groups had lower odds of documented sensory features than White, non-Hispanic children. Cognitive problems were not significantly related to sensory features. Problems related to adaptive behavior, emotional states, aggression, attention, fear, motor development, eating, and sleeping were associated with higher odds of having documented sensory features. Results from a large, population-based sample indicate a high prevalence of sensory features in autistic children, as well as relationships between sensory features and co-occurring problems. This study also pointed to potential disparities in the identification of sensory features, which should be examined in future research. Disparities should also be considered clinically to avoid reduced access to supports for sensory features and related functional problems. LAY SUMMARY: In a large, population-based sample of 25,627 autistic children, 74% had documented differences in how they respond to sensation. We also identified significant associations of sensory features with adaptive behavior and problems in other domains. Sensory features were less common among girls, children of color, and children of mothers with fewer years of education, suggesting potential disparities in identification.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Transtorno do Espectro Autista/epidemiologia , Transtorno Autístico/epidemiologia , Criança , Etnicidade , Feminino , Humanos , Masculino , Grupos Minoritários , Vigilância da População/métodos , Prevalência
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