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1.
BMC Pediatr ; 20(1): 168, 2020 04 17.
Artigo em Inglês | MEDLINE | ID: mdl-32303218

RESUMO

BACKGROUND: Many children and their families are affected by premature birth. Yet, little is known about their healthcare access and adverse family impact during early childhood. This study aimed to (1) examine differences in healthcare access and adverse family impact among young children by prematurity status and (2) determine associations of healthcare access with adverse family impact among young children born prematurely. METHODS: This was a secondary analysis of cross-sectional 2016 and 2017 National Survey of Children's Health data. The sample included 19,482 U.S. children ages 0-5 years including 242 very low birthweight (VLBW) and 2205 low birthweight and/or preterm (LBW/PTB) children. Prematurity status was defined by VLBW (i.e., < 1500 g at birth) and LBW/PTB (i.e., 1500-2499 g at birth and/or born at < 37 weeks with or without LBW). Healthcare access measures were adequate health insurance, access to medical home, and developmental screening receipt. Adverse family impact measures were ≥ $1000 in annual out-of-pocket medical costs, having a parent cut-back or stop work, parental aggravation, maternal health not excellent, and paternal health not excellent. The relative risk of each healthcare access and adverse family impact measure was computed by prematurity status. Propensity weighted models were fit to estimate the average treatment effect of each healthcare access measure on each adverse family impact measure among children born prematurely (i.e., VLBW or LBW/PTB). RESULTS: Bivariate analysis results showed that VLBW and/or LBW/PTB children generally fared worse than other children in terms of medical home, having a parent cut-back or stop working, parental aggravation, and paternal health. Multivariable analysis results only showed, however, that VLBW children had a significantly higher risk than other children of having a parent cut-back or stop work. Adequate health insurance and medical home were each associated with reduced adjusted relative risk of ≥$1000 in annual out-of-pocket costs, having a parent cut-back or stop work, and parental aggravation among children born prematurely. CONCLUSIONS: This study's findings demonstrate better healthcare access is associated with reduced adverse family impact among U.S. children ages 0-5 years born prematurely. Population health initiatives should target children born prematurely and their families.


Assuntos
Acessibilidade aos Serviços de Saúde , Doenças do Recém-Nascido , Doenças do Prematuro , Nascimento Prematuro , Pré-Escolar , Estudos Transversais , Atenção à Saúde , Família , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Gravidez
2.
Matern Child Health J ; 24(1): 39-53, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31650412

RESUMO

OBJECTIVES: One in five children have a learning and attentional disability (LAD). Parents of children with LAD are vulnerable to distress, but an evidence-based treatment has not been developed. METHODS: From June 2016 to November 2017, we conducted a mixed methods study to adapt and assess the virtual delivery of a mind-body group resiliency program, the Stress Management and Resiliency Training-Relaxation Response Resiliency Program (SMART-3RP), to meet the needs of parents of children with LAD; this is an 8-session weekly group intervention. In the first phase, we conducted 4 parent focus group interviews, 2 professional focus group interviews, and 5 professional individual interviews, and 1 pilot group to adapt the SMART-3RP to target the needs of parents of children with LAD. In the second phase, we conducted a pilot wait-list controlled study to assess the feasibility, acceptability, and preliminary efficacy of a videoconferencing delivery of the adapted program. Parents were randomized to an immediate intervention group (IG) or wait-list control group (WC). Surveys were administered at baseline (time 1), end of intervention for the IG or 3 months post-baseline for the WC (time 2), and 3 months post treatment for the IG or end of intervention for the WC (time 3). RESULTS: Qualitative findings illustrated high levels of parental stress, with primary stressors including navigating the educational system, interactions with other parents, familial concerns, and financial and professional sacrifices. We adapted the manual to target these stressors and modified session logistics and delivery. Fifty-three parents (mean age = 46.8; 90.6% female) participated nationally in the pilot trial. 62.5% of participants completed ≥ 6/8 sessions; 81.8% reported continued daily/weekly relaxation response exercise practice. T1-T2 comparisons found that IG versus WC participants showed significant improvements in distress [VAS], ∆M = - 1.95; d = .83 and resilience [CES], ∆M = 6.38; d = .83, as well as stress coping [MOCS-A] ∆M = 8.69; d = 1.39; depression and anxiety [PHQ-4], ∆M = - 1.79; d = .71; social support [MOS-SSS], ∆M = 5.47; d = .71; and empathy [IRI], ∆M = 3.17; d = .77; improvements were sustained at the 3 month post intervention follow-up. CONCLUSION: Pilot wait-list randomized trial findings showed promising feasibility, acceptability, and preliminary efficacy for the SMART-3RP intervention adapted for parents of children with LAD. This virtually-delivered resiliency intervention improved parents' distress, resiliency, and stress coping, which were sustained. CLINICAL TRIALS ID: NCT02772432.


Assuntos
Depressão/terapia , Pais/psicologia , Psicoterapia de Grupo/métodos , Qualidade de Vida/psicologia , Resiliência Psicológica , Estresse Psicológico/terapia , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Criança , Depressão/etiologia , Crianças com Deficiência/psicologia , Família , Estudos de Viabilidade , Feminino , Humanos , Deficiência Intelectual/diagnóstico , Masculino , Meditação , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Pais/educação , Aceitação pelo Paciente de Cuidados de Saúde , Avaliação de Programas e Projetos de Saúde , Estresse Psicológico/psicologia
3.
Cancer ; 124(16): 3390-3400, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29905942

RESUMO

BACKGROUND: To the authors' knowledge, health-related quality of life (HRQOL) outcomes are not well described in patients with medulloblastoma. The use of proton radiotherapy (RT) may translate into an improved HRQOL. In the current study, the authors report long-term HRQOL in patients with proton-treated pediatric medulloblastoma. METHODS: The current study was a prospective cohort HRQOL study of patients with medulloblastoma who were treated with proton RT and enrolled between August 5, 2002, and October 8, 2015. Both child report and parent-proxy report Pediatric Quality of Life Inventory (PedsQL) surveys were collected at baseline during RT and annually thereafter (score range on surveys of 0-100, with higher scores indicating better HRQOL). Patients were dichotomized by clinical/treatment variables and subgroups were compared. Mixed-model analysis was performed to determine the longitudinal trajectory of PedsQL scores. The Student t test was used to compare long-term HRQOL measures with published means from a healthy child population. RESULTS: Survey data were evaluable for 116 patients with a median follow-up of 5 years (range, 1-10.6 years); the median age at the time of diagnosis was 7.6 years (range, 2.1-18.1 years). At baseline, children reported a total core score (TCS) of 65.9, which increased by 1.8 points annually (P<.001); parents reported a TCS of 59.1, which increased by 2.0 points annually. Posterior fossa syndrome adversely affected baseline scores, but these scores significantly improved with time. At the time of last follow-up, children reported a TCS of 76.3, which was 3.3 points lower than that of healthy children (P = .09); parents reported a TCS of 69, which was 11.9 points lower than that of parents of healthy children (P<.001). Increased follow-up time from diagnosis correlated with improved HRQOL scores. CONCLUSIONS: HRQOL scores appear to increase over time after treatment in children treated with proton RT for medulloblastoma but remain lower compared with those of parent-proxy reports as well as published means from a healthy normative sample of children. Additional follow-up may translate into continued improvements in HRQOL. Cancer 2018. © 2018 American Cancer Society.


Assuntos
Meduloblastoma/epidemiologia , Meduloblastoma/radioterapia , Pediatria , Terapia com Prótons/efeitos adversos , Adolescente , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Masculino , Meduloblastoma/patologia , Pais , Qualidade de Vida , Inquéritos e Questionários , Adulto Jovem
4.
J Neurooncol ; 137(1): 119-126, 2018 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-29214403

RESUMO

Radiation therapy (RT) is integral in the treatment of pediatric brain tumors; however, photon RT (XRT) often results in intellectual decline, executive functioning (EF) deficits, academic underachievement/failure, and lower health-related quality of life (HRQoL). Proton RT (PRT) provides more targeted therapy, minimizing damage to the developing brain, yet few studies have examined its neuropsychological effects. This study investigated the role of EF in academic skills and HRQoL in a sample of children treated with PRT. A mediation model was proposed in which academic skills mediated relations between aspects of EF and school-based HRQoL (sHRQoL). Sixty-five children (x̅age = 12.4; 43.9% male) treated with PRT completed follow-up neuropsychological testing as part of routine care. Measures included assessment of intellectual functioning, EF, attention, and academic skills (reading, math, spelling). Parents reported on children's EF and attention problems. sHRQoL was assessed via child self-report. Children who underwent PRT demonstrated relatively intact intelligence, academics, attention, EF, and sHRQoL, but were at risk for reduced processing speed. Poorer working memory and processing speed were related to lower sHRQoL. Better EF and faster processing speed were associated with better academic skills, which were linked to higher sHRQoL. Better working memory was associated with better math performance, which was linked to higher sHRQoL; this relationship did not hold for reading or spelling. Results highlight the importance of EF skills in academic performance and sHRQoL, and the need for routine screening of EF deficits and proactive supports. Supports may include cognitive rehabilitation and in-class accommodations. Overall, results compare favorably to XRT outcomes reported in the literature.


Assuntos
Neoplasias Encefálicas/psicologia , Neoplasias Encefálicas/radioterapia , Função Executiva , Terapia com Prótons/efeitos adversos , Qualidade de Vida , Sucesso Acadêmico , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Memória de Curto Prazo , Testes Neuropsicológicos , Resultado do Tratamento
5.
JCO Oncol Pract ; : OP2300680, 2024 Mar 12.
Artigo em Inglês | MEDLINE | ID: mdl-38471048

RESUMO

PURPOSE: Childhood cancer survivors are at increased risk for underinsurance and health insurance-related financial burden. Interventions targeting health insurance literacy (HIL) to improve the ability to understand and use health insurance are needed. METHODS: We codeveloped a four-session health insurance navigation tools (HINT) intervention, delivered synchronously by a patient navigator, and a corresponding booklet. We conducted a randomized pilot trial with survivors from the Childhood Cancer Survivor Study comparing HINT with enhanced usual care (EUC; booklet). We assessed feasibility, acceptability, and preliminary efficacy (HIL, primary outcome; knowledge and confidence with health insurance terms and activity) on a 5-month survey and exit interviews. RESULTS: Among 231 invited, 82 (32.5%) survivors enrolled (53.7% female; median age 39 years, 75.6% had employer-sponsored insurance). Baseline HIL scores were low (mean = 28.5; 16-64; lower scores better); many lacked knowledge of Affordable Care Act (ACA) provisions. 80.5% completed four HINT sessions, and 93.9% completed the follow-up survey. Participants rated HINT's helpfulness a mean of 8.9 (0-10). Exit interviews confirmed HINT's acceptability, specifically its virtual and personalized delivery and helpfulness in building confidence in understanding one's coverage. Compared with EUC, HINT significantly improved HIL (effect size = 0.94. P < .001), ACA provisions knowledge (effect size = 0.73, P = .003), psychological financial hardship (effect size = 0.64, P < .006), and health insurance satisfaction (effect size = 0.55, P = .03). CONCLUSION: Results support the feasibility and acceptability of a virtual health insurance navigation program targeted for childhood survivors to improve HIL. Randomized trials to assess the efficacy and sustainability of health insurance navigation on HIL and financial burden are needed.

6.
Acad Pediatr ; 23(6): 1196-1203, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36871611

RESUMO

OBJECTIVE: The purpose of the current study was to explore provider perspectives on the strengths and challenges of telehealth services (e.g., behavioral interventions, physical, speech, and occupational therapy, medication management) for children with autism spectrum disorder during coronavirus disease 2019 related shutdowns. METHODS: From September 2020 to May 2021, we conducted qualitative interviews with 35 providers across multiple disciplines from 17 sites in the Autism Care Network. Qualitative data were analyzed using a framework approach and common themes were identified. RESULTS: Providers across clinical disciplines identified strengths of the virtual model, such as its flexibility and the opportunity it provided to see children in their home environment. They also indicated that some interventions worked better virtually than others, and that there were several factors that impacted their success. Respondents were generally satisfied providing parent-mediated interventions but expressed mixed satisfaction in using telehealth for direct-to-patient care. CONCLUSIONS: Results suggest that telehealth services for children with autism spectrum disorder could be a helpful tool in decreasing barriers and improving service delivery, especially when tailored to the individual needs of the patient. More research is needed on the factors contributing to its success in order to eventually inform clinical guidelines regarding the prioritization of children seen for in-person visits.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , COVID-19 , Telemedicina , Humanos , Criança , Transtorno do Espectro Autista/terapia , Pandemias
7.
Acad Pediatr ; 23(6): 1187-1195, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36460184

RESUMO

BACKGROUND /OBJECTIVES: Neurotypical siblings (NT siblings) of children with autism spectrum disorder (ASD) are at elevated risk for emotional distress and adjustment problems. Resiliency is the ability to cope and adapt with ongoing stressors. We conducted a randomized waitlist-controlled pilot trial to examine the feasibility, acceptability, and preliminary efficacy of an adapted virtual mind-body resiliency group intervention for teen NT siblings of children with ASD. METHODS: We modified the Stress Management and Resiliency Training-Relaxation Response Resiliency Program for NT siblings of children with ASD (SibChat). We randomly assigned teens (aged 14-17) to immediate intervention (IG) versus waitlist control (WLC). The intervention included eight 60-minute weekly video conference group sessions. We assessed feasibility (enrollment, attendance, and retention) and acceptability (post treatment survey and weekly relaxation response practice). We explored group differences in pre-post change scores for 1) stress coping (Measure of Current Status-A) and 2) resiliency (Current Experiences Scale) using independent samples t tests and effect size calculations. RESULTS: We enrolled 83% of screened eligible teens. A total of 90% IG and 75% WLC participants attended at least 6/8 sessions. Among IG participants who completed the post treatment survey, 79% reported practicing relaxation response exercises at least "a few times a week". Comparing change in baseline to time 1, the IG showed better relative changes than the WLC group in stress coping (d = 0.60) and resiliency (d = 0.24). CONCLUSIONS: Our pilot trial showed promising feasibility, acceptability, and preliminary efficacy of SibChat on at least one of the 2 primary outcomes supporting further testing of the SibChat intervention. CLINICAL TRIAL REGISTRATION: US National Library of Medicine. REGISTRATION NUMBER: NCT04369417. https://clinicaltrials.gov/ct2/show/NCT04369417.


Assuntos
Transtorno do Espectro Autista , Adolescente , Humanos , Criança , Transtorno do Espectro Autista/terapia , Projetos Piloto , Irmãos , Adaptação Psicológica
8.
J Autism Dev Disord ; 53(9): 3683-3699, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-35831693

RESUMO

A randomized controlled trial established initial efficacy of a novel parent training (PT) intervention for improving oral hygiene and oral health in underserved children with ASD (Fenning et al., 2022), a population at risk for unmet dental needs. The present study describes our emic approach to PT development alongside treatment outcome data examining feasibility, acceptability, and engagement. Families with Medicaid-eligible children with ASD ages 3 to 13 years (85% male, 62% with intellectual disability) were assigned to receive PT (n = 60) or a psychoeducational toolkit (n = 59). Results indicate strong retention, fidelity, and adherence, with quantitative and qualitative metrics revealing high treatment satisfaction and utilization. Discussion focuses on implications for individualizing treatment to optimize engagement of underrepresented families.


Assuntos
Transtorno do Espectro Autista , Humanos , Criança , Masculino , Feminino , Transtorno do Espectro Autista/terapia , Pais/educação , Resultado do Tratamento , Comportamentos Relacionados com a Saúde
9.
Acad Pediatr ; 2023 Nov 02.
Artigo em Inglês | MEDLINE | ID: mdl-37925071

RESUMO

OBJECTIVE: Understanding the types of functional challenges faced by adolescents and young adults with disabilities (AYA-WD) can help payers, clinicians, community-based service providers, and policymakers recognize and meet needs. This paper describes state-level prevalence rates for 1) AYA-WD overall and for 2) impairment types singly and in combinations; and 3) examines how rates may differ between those insured by Medicaid versus commercial insurance. METHODS: This descriptive study uses Colorado's All Payer Claims Dataset 2014-2018 to identify insured 10- to 26-year-olds (Medicaid only: 333,931; commercially only: 392,444). It then applies the previously validated Children with Disabilities Algorithm (CWDA) and its companion, the Diagnosis-to-Impairment-Type Algorithm (DITA), to compare state-level prevalence rates by insurance source for disability overall and for each of five impairment types singly and in combination. RESULTS: Disability prevalence was greater among the Medicaid-insured AYA-WD by +7.6% points (pp)-Medicaid: 11.9% (47,654/333,931), commercial: 4.3% (16,907/392,444). Most AYA-WD had a single impairment, but the prevalence of AYA-WD with two or more impairments was greater among the Medicaid-insured than the commercially insured (+9.9 pp; Medicaid: 33.5% [15,963/47,654], commercial: 23.7% [3992/16, 907]), as was the prevalence of impairment types that were physical (+6.7 pp; Medicaid: 54.7% [26,054/47,654], commercial: 48.0% [8121/16,907]); developmental (+4.1 pp; Medicaid: 35.4% [16,874/47,654], commercial: 31.3% [5290/16,907]); psychiatric (+6.7 pp; Medicaid 21.3% [10,175/47,654], commercial: 14.6% [2470/16,907]), and intellectual (+9.3 pp; Medicaid: 26.2% [12,501/47,654], commercial: 16.9% [2858/16,907]). CONCLUSIONS: CWDA and DITA can be used to understand the rates at which impairment types and combinations occur in a population with childhood-onset disabilities.

10.
Matern Child Health J ; 16(2): 297-305, 2012 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-21318293

RESUMO

Family-centered care (FCC) is a partnership approach to health care decision-making between the family and health care provider. FCC is considered the standard of pediatric health care by many clinical practices, hospitals, and health care groups. Despite widespread endorsement, FCC continues to be insufficiently implemented into clinical practice. In this paper we enumerate the core principles of FCC in pediatric health care, describe recent advances applying FCC principles to clinical practice, and propose an agenda for practitioners, hospitals, and health care groups to translate FCC into improved health outcomes, health care delivery, and health care system transformation.


Assuntos
Serviços de Saúde da Criança/tendências , Atenção à Saúde/tendências , Enfermagem Familiar , Relações Profissional-Família , Criança , Humanos , Assistência Centrada no Paciente/organização & administração , Pediatria
11.
Acad Pediatr ; 22(2S): S22-S27, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-35248244

RESUMO

Families of children and youth with special health care needs (CYSHCN) can face challenges with regard to health and well-being. Health systems are designed to support CYSHCN but do not often consider the health and well-being of their family. Despite a growing body of literature, substantial gaps remain in our understanding of the impact of caregiving on family health and well-being and mechanisms of supporting families. In order to better understand and address these gaps, a national CYSHCN network developed a national research agenda to prioritize key areas of insufficient understanding of health and well-being for families of CYSHCN. Questions identified by the research agenda include: 1) How can family resiliency and adaptability be measured and improved? 2) How can we better assess family mental health needs and implement appropriate interventions? 3) What is the impact of family health on CYSHCN health outcomes? This paper describes a review of what is currently known regarding health for families of CYSHCN, gaps in the literature focused on the research agenda questions, and recommendations for future research. Based on the research agenda and current state of research for family health of CYSHCN, the authors recommend focusing on resiliency and adaptability as outcomes, using implementation science to address mental health concerns of family members and to further assess the impact of family health on health outcomes of CYSHCN. In addition, research should have a special focus on diverse populations of families and consider these questions in the context of different family structures.


Assuntos
Atenção à Saúde , Saúde da Família , Adolescente , Criança , Promoção da Saúde , Humanos
12.
J Autism Dev Disord ; 52(12): 5083-5098, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-35103899

RESUMO

This study examined clinician insights into telehealth assessment services for autism spectrum disorder implemented during the COVID-19 pandemic. 35 clinicians from multiple disciplines across 17 sites in the Autism Care Network were interviewed. Themes identified through qualitative analyses included factors related to confidence in diagnosis (impressions of in-home observation; child and family factors that affected diagnostic confidence; changes in rapport); patient and family factors related to telehealth (perceived family benefits of and barriers to telehealth; factors related to healthcare disparities; factors specific to non-native English speakers); and institutional and workplace factors related to transitioning to telehealth (institutional support; changes to efficacy, attendance, and work satisfaction). Results suggest that telehealth has potential to be an effective tool in autism assessment practice.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , COVID-19 , Telemedicina , Criança , Humanos , Transtorno do Espectro Autista/diagnóstico , Transtorno do Espectro Autista/epidemiologia , Pandemias
13.
Acad Pediatr ; 22(5): 818-823, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35031500

RESUMO

OBJECTIVE: To examine associations between neighborhood characteristics and asthma prevalence and severity among low-income children in a large nationally representative sample. METHODS: Data source: 2018 National Survey of Children's Health, limited to low-income children, ages 0-17 years. We grouped parent responses about neighborhood characteristics into 5 scores: neighborhood support, safety, resources and quality, and a total score. Logistic regression compared rates and severity of asthma by neighborhood scores, adjusting for age, sex, race, and income. RESULTS: Of 8,653 low-income children, those living in neighborhoods with better total neighborhood scores were significantly less likely to have parent-reported asthma; OR = 0.9, 95% CI: 0.8-1.0; P = .02, with similar findings for children living in neighborhoods with higher support, safety, and quality scores. We found no associations between neighborhood scores and asthma severity in this population. CONCLUSIONS: Favorable neighborhoods are associated with lower parent-reported asthma prevalence in low-income children but not asthma severity. These data may support providers and policy makers interested in child asthma in addressing neighborhood improvement.


Assuntos
Asma , Características da Vizinhança , Adolescente , Asma/epidemiologia , Criança , Pré-Escolar , Humanos , Renda , Lactente , Recém-Nascido , Pobreza , Características de Residência
14.
Disabil Health J ; 15(1): 101198, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34489204

RESUMO

BACKGROUND: Therapy services can support developmental needs, improve social emotional outcomes, and reduce persistent health inequities for children with developmental disabilities (DD). Receipt of therapy services may be especially timely when children with DD are school-aged, once diagnosis has often occurred. Yet limited knowledge exists on geographic variability and determinants of therapy use among school-aged U.S. children with DD. OBJECTIVES: We aimed to (1) determine if therapy use varies significantly by state and (2) examine associations of health determinants with therapy use among U.S. school-aged children with DD. METHODS: This was a secondary analysis of 2016 and 2017 National Survey of Children's Health data. The sample included 9984 children with DD ages 6-17 years. We obtained odds ratios and predicted margins with 95% confidence intervals from multilevel logistic regression models to examine therapy use variation and determinants. RESULTS: Overall, 34.6% of children used therapy services. Therapy use varied significantly across states (σ2 = 0.11, SE = 0.04). Younger age, public insurance, functional limitations, individualized education program, frustration accessing services, and care coordination need were associated with higher adjusted odds of therapy access. In states with Medicaid Home and Community-Based Services waivers, higher estimated annual waiver cost was associated with lower adjusted odds of therapy use. CONCLUSIONS: Results highlight geographic disparities in therapy use and multilevel targets to increase therapy use for school-aged children with DD.


Assuntos
Deficiências do Desenvolvimento , Pessoas com Deficiência , Adolescente , Criança , Deficiências do Desenvolvimento/terapia , Humanos , Modelos Logísticos , Medicaid , Razão de Chances , Estados Unidos
15.
Autism ; 26(6): 1460-1476, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-34657479

RESUMO

LAY ABSTRACT: Caregiver strain is the adverse impact that parents of children with emotional and behavioral issues including autism often experience (e.g. negative consequences of caregiving such as financial strain and social isolation; negative feelings that are internal to the caregiver such as worry and guilt; and negative feelings directed toward the child such as anger or resentment). This study showed that on average caregiver strain did not significantly change in North American parents of children with autism during a 2-year period. Improved caregiver strain was linked to improved child functioning and behavior. Routine assessment of caregiver strain and referral to evidence-based programming and supports may help alleviate some of the burden that families of children with autism commonly experience.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Transtorno Autístico/psicologia , Transtorno Autístico/terapia , Cuidadores/psicologia , Criança , Humanos , América do Norte , Pais/psicologia , Sistema de Registros
16.
J Autism Dev Disord ; 52(8): 3598-3611, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34435270

RESUMO

Little is known about how parent health literacy contributes to health-related outcomes for children with autism. This mixed-methods study included 82 U.S. parents of a child with autism 2-5 years-old and sought to describe (1) health literacy dimensions, (2) how health literacy influences services use, and (3) health literacy improvement strategies. Results showed: autism information was accessed from multiple sources; understanding autism information involved "doing your own research"; autism information empowered decision-making; health literacy facilitated behavioral services use; health literacy influenced medication use; family and system characteristics also affected services use; autism education remains needed; services information is needed across the diagnostic odyssey; and greater scientific information accessibility would increase uptake. Findings demonstrate how parent health literacy affects services use.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Letramento em Saúde , Transtorno Autístico/diagnóstico , Transtorno Autístico/terapia , Criança , Pré-Escolar , Escolaridade , Humanos , Pais/educação
17.
J Autism Dev Disord ; 52(2): 617-622, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33751374

RESUMO

This study examined emergency department (ED) utilization by adolescents and young adults, 12-30 years of age (AYA) with autism spectrum disorder (ASD) using the 2016 Healthcare Cost and Utilization Project/National Emergency Department Sample (HCUP/NEDS). We investigated the principal reason for an ED visit, presence of an ambulatory care sensitive condition (ACSC), and likelihood of hospital admission following ED encounter in ASD and Non-ASD cohorts. The ASD cohort had a higher proportion of ED visits for ACSC diagnoses as compared to the Non-ASD cohort. In addition, the likelihood of admission following an ED visit in the ASD cohort was 3.7 times greater than in the Non-ASD cohort.


Assuntos
Transtorno do Espectro Autista , Adolescente , Transtorno do Espectro Autista/diagnóstico , Transtorno do Espectro Autista/epidemiologia , Transtorno do Espectro Autista/terapia , Estudos de Coortes , Serviço Hospitalar de Emergência , Hospitalização , Humanos , Aceitação pelo Paciente de Cuidados de Saúde , Adulto Jovem
18.
Pediatrics ; 149(5)2022 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-35211746

RESUMO

OBJECTIVE: Children with autism spectrum disorder (ASD) have difficulty participating in dental care and experience significant unmet dental needs. We examined the efficacy of parent training (PT) for improving oral hygiene and oral health in underserved children with ASD. METHOD: Families of Medicaid-eligible children with ASD (ages 3-13 years, 85% boys, 62% with intellectual disability) reporting difficulty with dental care participated in a 6-month randomized controlled trial comparing PT (n = 60) with a psychoeducational dental toolkit (n = 59). Primary outcomes were parent-reported frequency of twice-daily toothbrushing and dentist-rated visible plaque. Secondary outcomes included parent-reported child behavior problems during home oral hygiene and dentist-rated caries. Dentists were blind to intervention assignment. Analyses were intention to treat. RESULTS: Retention was high at posttreatment (3 months, 93%) and 6-month follow-up (90%). Compared with the toolkit intervention, PT was associated with increased twice-daily toothbrushing at 3 (78% vs 55%, respectively; P < .001) and 6 (78% vs 62%; P = .002) months and a reduction in plaque at 3 months (intervention effect, -0.19; 95% confidence interval [CI], -0.36 to -0.02; P = .03) and child problem behaviors at 3 (-0.90; 95% CI, -1.52 to -0.28; P = .005) and 6 (-0.77; 95% CI, -1.39 to -0.14; P = .02) months. Comparatively fewer caries developed in children receiving the PT intervention over 3 months (ratio of rate ratios, 0.73; 95% CI, 0.54 to 0.99; P = .04). CONCLUSIONS: PT represents a promising approach for improving oral hygiene and oral health in underserved children with ASD at risk for dental problems.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Cárie Dentária , Comportamento Problema , Adolescente , Transtorno do Espectro Autista/terapia , Criança , Pré-Escolar , Assistência Odontológica , Cárie Dentária/terapia , Feminino , Humanos , Masculino , Pais/educação
19.
Eur Child Adolesc Psychiatry ; 20(8): 401-11, 2011 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-21647553

RESUMO

The objective of the study was to evaluate whether mental health problems identified through screens administered in first grade are related to poorer academic achievement test scores in the fourth grade. The government of Chile uses brief teacher- and parent-completed measures [Teacher Observation of Classroom Adaptation-Revised (TOCA-RR) and Pediatric Symptom Checklist (PSC-Cl)] to screen for mental health problems in about one-fifth of the country's elementary schools. In fourth grade, students take the national achievement tests (SIMCE) of language, mathematics and science. This study examined whether mental health problems identified through either or both screens predicted achievement test scores after controlling for student and family risk factors. A total of 17,252 students had complete first grade teacher forms and these were matched with fourth grade SIMCE data for 11,185 students, 7,903 of whom also had complete parent form data from the first grade. Students at risk on either the TOCA-RR or the PSC-Cl or both performed significantly worse on all SIMCE subtests. Even after controlling for covariates and adjusting for missing data, students with mental health problems on one screen in first grade had fourth grade achievement scores that were 14-18 points (~1/3 SD) lower than students screened as not at risk. Students at risk on both screens had scores that were on average 33 points lower than students at risk on either screen. Mental health problems in first grade were one of the strongest predictors of lower achievement test scores 3 years later, supporting the premise that for children mental health matters in the real world.


Assuntos
Escolaridade , Transtornos Mentais/diagnóstico , Saúde Mental , Logro , Criança , Avaliação Educacional , Feminino , Humanos , Masculino , Programas de Rastreamento , Instituições Acadêmicas , Meio Social , Estudantes
20.
Autism ; 25(3): 840-853, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-32693628

RESUMO

LAY ABSTRACT: Children with autism are at high risk for vision problems, which may compound core social and behavioral symptoms if untreated. Despite recommendations for school-aged children with autism to receive routine vision testing by an eye care practitioner (ophthalmologist or optometrist), little is known about their vision care. This study, therefore, examined vision care among 351 children with autism ages 6-17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Parents were surveyed using the following vision care measures: (1) child's vision was tested with pictures, shapes, or letters in the past 2 years; (2) child's vision was tested by an eye care practitioner in the past 2 years; (3) child was prescribed corrective eyeglasses; and (4) child wore eyeglasses as recommended. Sociodemographic characteristics such as parent education level, child functioning characteristics such as child communication abilities, and family functioning characteristics such as caregiver strain were also assessed in relationship to vision care. Although 78% of children with autism had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Differences in vision care were additionally found among children with autism by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism do not receive recommended vision care and highlight potentially modifiable disparities in vision care.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Adolescente , Transtorno do Espectro Autista/terapia , Canadá , Criança , Humanos , América do Norte , Pais , Sistema de Registros , Instituições Acadêmicas , Estados Unidos
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