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1.
Front Psychol ; 12: 717389, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34721165

RESUMEN

Background: Individuals on the autism spectrum are often described as having atypical social interactions. Ideally, interactional synchrony helps any interaction flow smoothly with each individual responding verbally, non-verbally, and/or emotionally within a short timeframe. Differences in interactional synchrony may impact how individuals on the autism spectrum experience social encounters. Method: This mixed methods pilot study examined interactional synchrony in five cases of adolescents and adults on the autism spectrum through secondary analysis of video of the participants in movement-based mirroring tasks during dance/movement therapy. Raters described the movement and interactions of the participants while they were leading and following mirroring and engaged in open-ended free dances with a partner. Videos were also scored on measures of affective engagement, flow of the interaction, and synchrony. Results: One of the most striking findings of this study was the difference between engagement in the instructions of the task and engagement with the partner: participants often followed the instructions for the mirroring tasks with little further social engagement with their partner. When participants did engage in moments of social initiation, attunement to the partner, and interactive behaviors, these did not develop into longer interactions. A paired t-test of the correlation coefficients for each participant showed that scores on synchrony and affective engagement were more strongly positively correlated in the less structured open-ended dance and in video clips of interactive behaviors, than in the videos of simply leading or following mirroring. Synchrony was also significantly more strongly positively correlated with the observed flow of the interaction than with observed affective engagement. With the small sample size, however, most of the correlation coefficients were not significant and should be tested on a larger sample. Discussion: Interpersonal synchrony may not be sufficient to effectively support social engagement when individuals on the autism spectrum simply follow instructions to synchronize their movements. Synchrony-based interventions may therefore need to include more complex open-ended social scenarios as interactional synchrony may then be more correlated with perceived interaction quality. Therapists may also need to partner with participants to model using non-verbal social behaviors to develop interactions within mirroring tasks.

2.
Res Dev Disabil ; 112: 103897, 2021 May.
Artículo en Inglés | MEDLINE | ID: mdl-33610079

RESUMEN

BACKGROUND AND AIMS: Research in school-aged children, adolescents, and adults with autism spectrum disorder (ASD) has found sex-based differences in behavioral, developmental, and diagnostic outcomes. These findings have not been consistently replicated in preschool-aged children. We examined sex-based differences in a large sample of 2-5-year-old children with ASD symptoms in a multi-site community-based study. METHODS AND PROCEDURES: Based on a comprehensive evaluation, children were classified as having ASD (n = 1480, 81.55 % male) or subthreshold ASD characteristics (n = 593, 70.15 % male). Outcomes were behavior problems, developmental abilities, performance on ASD screening and diagnostic tests, and parent-reported developmental conditions diagnosed before study enrollment. OUTCOMES AND RESULTS: We found no statistically significant sex differences in behavioral functioning, developmental functioning, performance on an ASD screening test, and developmental conditions diagnosed before study enrollment among children with ASD or subthreshold ASD characteristics. Males in both study groups had more parent reported restricted interests and repetitive behaviors than females, but these differences were small in magnitude and not clinically meaningful. CONCLUSIONS AND IMPLICATIONS: Preschool males and females who showed risk for ASD were more similar than different in the outcomes assessed in our study. Future research could examine sex-based differences in ASD phenotypes as children age.


Asunto(s)
Trastorno del Espectro Autista , Adolescente , Adulto , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Niño , Preescolar , Femenino , Humanos , Masculino , Fenotipo , Caracteres Sexuales
3.
J Pediatr ; 232: 264-271, 2021 05.
Artículo en Inglés | MEDLINE | ID: mdl-33493493

RESUMEN

OBJECTIVES: To explore how many pre-school aged children with autism spectrum disorder (ASD) used psychotropic medication, child and geographic factors associated with psychotropic medication use, and how many children who used psychotropic medication did or did not ever receive behavior therapy. STUDY DESIGN: Children 2-5 years of age were enrolled from 2012 to 2016 in a multisite case-control study designed to investigate the development and risk factors of ASD. Children with a positive ASD screen or ASD diagnosis upon enrollment were asked to complete a comprehensive evaluation to determine ASD status and developmental level. Caregivers completed a Services and Treatments Questionnaire and multiple self-administered questionnaires to determine child use of psychotropic medication, ever receipt of behavior therapy, and presence of co-occurring symptoms. RESULTS: There were 763 children who were classified as ASD and had data collected on the Services and Treatments Questionnaire. Of those, 62 (8.1%) used psychotropic medication to treat behavioral symptoms and 28 (3.7%) were ≤3 years of age when medication was first started. Attention problems (aOR, 7.65; 95% CI, 3.41-16.1; P < .001) and study site (aOR, 2.62; 95% CI, 1.04-6.56; P = .04) were significantly associated with psychotropic medication use after controlling for maternal race/ethnicity. More than one-half (59.7%) of those who used psychotropic medication did not ever receive behavior therapy. CONCLUSIONS: Many preschool-aged children with ASD who use psychotropic medication do not receive behavior therapy. Pediatricians are an important resource for children and families and can help facilitate behavioral treatment for children with ASD and other disorders.


Asunto(s)
Trastorno del Espectro Autista/terapia , Terapia Conductista/estadística & datos numéricos , Utilización de Medicamentos/estadística & datos numéricos , Pautas de la Práctica en Medicina/estadística & datos numéricos , Psicotrópicos/uso terapéutico , Trastorno del Espectro Autista/psicología , Estudios de Casos y Controles , Preescolar , Terapia Combinada , Femenino , Encuestas de Atención de la Salud , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Humanos , Masculino , Resultado del Tratamiento , Estados Unidos
4.
J Dev Behav Pediatr ; 41(4): 251-257, 2020 05.
Artículo en Inglés | MEDLINE | ID: mdl-31977588

RESUMEN

OBJECTIVES: (1) Report the occurrence of wandering, or leaving a supervised space, among children with confirmed autism spectrum disorder (ASD), other developmental delay (DD) with a previous but unconfirmed ASD diagnosis (DDprevASD), DD without a previous ASD diagnosis, and a population comparison group (POP) at an age when wandering is no longer expected and (2) explore whether ASD status is associated with wandering independent of behavioral, developmental, and maternal factors. METHOD: Parents and children aged 4 to 5 years enrolled in the Study to Explore Early Development Phase-1+2. All children were screened for ASD symptoms upon enrollment. Those with ASD symptoms and/or a previous ASD diagnosis received the Mullen Scales of Early Learning (MSEL) to determine their developmental level and 2 ASD diagnostic tests to determine their ASD status. All other children were evaluated with the MSEL alone. Mothers completed the Child Behavior Checklist/1½-5, which includes an item on whether the child wanders away (categorized as at least sometimes true vs not true) and items assessing behavior problems. RESULTS: Children with ASD (N = 1195) were significantly more likely to wander than children classified as DDprevASD (N = 230), DD (N = 1199), or POP (N = 1272) (60.4%, 41.3%, 22.3%, and 12.4%, respectively, p < 0.01). ASD status, very low developmental level, and affective, anxiety, attention, and oppositional problems were each independently associated with wandering behavior. CONCLUSION: Wandering is significantly more common among children with ASD and those with behavioral and developmental problems compared with other children. These findings can be used to increase the awareness of wandering among children with atypical development.


Asunto(s)
Trastorno del Espectro Autista/complicaciones , Conducta Infantil , Discapacidades del Desarrollo/complicaciones , Conducta Errante , Trastorno del Espectro Autista/epidemiología , Preescolar , Estudios de Cohortes , Discapacidades del Desarrollo/epidemiología , Femenino , Humanos , Masculino , Estados Unidos/epidemiología , Conducta Errante/estadística & datos numéricos
5.
Arch Psychiatr Nurs ; 32(2): 215-223, 2018 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-29579515

RESUMEN

BACKGROUND/PURPOSE: The purpose of the study was to explore and describe: (a) the prevalence of incidents of aggression and violence among patients, including frequency, kinds and severity of incidents of among patients; target of the aggression; (b) situational factors including time of location and time of event; and (c) staff interventions. We describe the relationships among variables to answer the following research questions: (1) What factors are associated with incidents of aggression and violence, and (2) are factors modifiable? METHODS: The exploratory descriptive study used data collected by retrospective chart review over a three-year period; the dates of January 1, 2011 to December 31, 2013. A medical record was included if it met the following criteria: 1) person ages 18-75years; 2) admitted to the psychiatric mental care unit (PMCU) during the designated time frame; 3) the length of stay was up to 7days; and 4) during this time the person made a verbal threat of violence or exhibited violent behavior towards property, self, another patient, or a member of the hospital staff. We examined data for a relationship among score on risk assessment items, sociodemographic factors, and outcome variables. We employed a variety of statistical analytic approaches to describe our data and uncover relationships among variables. RESULTS: There were 132 incidents of aggression/violence between January 1, 2011 and December 31, 2013Of the 93 patients, 68% (n=63) were male and 32% (n=30) were female. Their ages ranged from 20 to 57years with a mean age of 37 for females and 39 for males. Significant associations were found between type of intervention and patients' admitting diagnoses: Χ2 (5, N=97)=11.603, p=0.004. Significant associations were also found with regard to drug history, Χ2(1, n=96)=4.673, p=0.03 and history of violence, Χ2(1, N=91)=7.618, p=0.006. Key variables were target (the staff) and location (the hallway). Multiple factor analysis yielded inconclusive results, as numerous factors were identified and variable loadings were weak possibly due to the small sample size and high number of relevant variables. CONCLUSION: Findings from this study can be used to improve high quality care for hospitalized patients with acute mental health problems. All incidents of aggression/violence cannot realistically be prevented. Staff must stay vigilant for self-safety. The hallway may be modified to reduce visual and auditory stimuli.


Asunto(s)
Agresión/psicología , Hospitalización , Pacientes Internos/estadística & datos numéricos , Servicios de Salud Mental/estadística & datos numéricos , Violencia/estadística & datos numéricos , Adulto , Femenino , Humanos , Masculino , Trastornos Mentales/epidemiología , Trastornos Mentales/psicología , Personal de Enfermería en Hospital , Grupo de Atención al Paciente , Prevalencia , Servicio de Psiquiatría en Hospital , Estudios Retrospectivos , Medición de Riesgo/métodos , Administración de la Seguridad , Violencia/psicología
6.
J Autism Dev Disord ; 47(5): 1453-1463, 2017 May.
Artículo en Inglés | MEDLINE | ID: mdl-28229350

RESUMEN

Despite increasing utilization of chromosomal microarray analysis (CMA) for autism spectrum disorders (ASD), limited information exists about how results influence parents' beliefs about etiology and prognosis. We conducted in-depth interviews and surveys with 57 parents of children with ASD who received CMA results categorized as pathogenic, negative or variant of uncertain significance. Parents tended to incorporate their child's CMA results within their existing beliefs about the etiology of ASD, regardless of CMA result. However, parents' expectations for the future tended to differ depending on results; those who received genetic confirmation for their children's ASD expressed a sense of concreteness, acceptance and permanence of the condition. Some parents expressed hope for future biomedical treatments as a result of genetic research.


Asunto(s)
Actitud Frente a la Salud , Trastorno del Espectro Autista/psicología , Cultura , Padres/psicología , Trastorno del Espectro Autista/genética , Niño , Femenino , Genómica , Humanos , Masculino , Análisis por Micromatrices , Pronóstico , Investigación Cualitativa , Encuestas y Cuestionarios
7.
J Autism Dev Disord ; 46(11): 3607-3614, 2016 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-27565654

RESUMEN

Self-injurious behaviors (SIB) have been reported in more than 30 % of children with an autism spectrum disorder (ASD) in clinic-based studies. This study estimated the prevalence of SIB in a large population-based sample of children with ASD in the United States. A total of 8065 children who met the surveillance case definition for ASD in the Autism and Developmental Disabilities Monitoring (ADDM) Network during the 2000, 2006, and 2008 surveillance years were included. The presence of SIB was reported from available health and/or educational records by an expert clinician in ADDM Network. SIB prevalence averaged 27.7 % across all sites and surveillance years, with some variation between sites. Clinicians should inquire about SIB during assessments of children with ASD.


Asunto(s)
Trastorno del Espectro Autista/epidemiología , Conducta Autodestructiva/epidemiología , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/psicología , Niño , Comorbilidad , Estudios Transversales , Femenino , Humanos , Masculino , Prevalencia , Conducta Autodestructiva/diagnóstico , Conducta Autodestructiva/psicología , Estados Unidos
8.
J Spec Pediatr Nurs ; 20(4): 244-58, 2015 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-26112659

RESUMEN

PURPOSE: The aim of this study was to examine mothers' experiences with chromosomal microarray analysis (CMA) for a child with autism spectrum disorder (ASD). DESIGN AND METHODS: This is a descriptive qualitative study using thematic content analysis of in-depth interview with 48 mothers of children who had genetic testing for ASD. RESULTS: The principal theme, "something is missing," included missing knowledge about genetics, information on use of the results, explanations of the relevance to the diagnosis, and relevance to life-long care. Two subordinate themes were (a) disappreciation of the helpfulness of scientific information to explain the diagnosis, and (b) returning to personal experience for interpretation. PRACTICE IMPLICATIONS: The test "appreciated" in value when results could be linked to the phenotype.


Asunto(s)
Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/genética , Aberraciones Cromosómicas , Análisis por Micromatrices/métodos , Aceptación de la Atención de Salud , Adolescente , Adulto , Niño , Preescolar , Estudios de Evaluación como Asunto , Femenino , Humanos , Entrevistas como Asunto , Cuidados a Largo Plazo , Masculino , Persona de Mediana Edad , Relaciones Madre-Hijo , Madres/psicología , Satisfacción Personal
9.
J Autism Dev Disord ; 45(10): 3262-75, 2015 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-26066358

RESUMEN

Clinical guidelines recommend chromosomal microarray analysis (CMA) for all children with autism spectrum disorders (ASDs). We explored the test's perceived usefulness among parents of children with ASD who had undergone CMA, and received a result categorized as pathogenic, variant of uncertain significance, or negative. Fifty-seven parents participated in a semi-structured telephone interview, and 50 also completed a survey. Most parents reported that CMA was helpful for their child and family. Major themes regarding perceived usefulness were: medical care, educational and behavioral interventions, causal explanation, information for family members, and advancing knowledge. Limits to utility, uncertainties and negative outcomes were also identified. Our findings highlight the importance of considering both health and non-health related utility in genomic testing.


Asunto(s)
Trastorno del Espectro Autista/psicología , Pruebas Genéticas , Padres/psicología , Aceptación de la Atención de Salud , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/genética , Niño , Preescolar , Femenino , Humanos , Masculino , Análisis por Micromatrices
10.
J Autism Dev Disord ; 45(10): 3183-94, 2015 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-26048040

RESUMEN

This study examined the phenotypic profiles of children aged 30-68 months in the Study to Explore Early Development (SEED). Children classified as autism spectrum disorder (ASD), developmental delay (DD) with ASD symptoms, DD without ASD symptoms, and population comparison (POP) differed significantly from each other on cognitive, adaptive, behavioral, and social functioning and the presence of parent-reported conditions. Children with ASD and DD with ASD symptoms had mild to severe ASD risk on several measures compared to children with other DD and POP who had little ASD risk across measures. We conclude that children in SEED have varying degrees of ASD impairment and associated deficits. SEED thus provides a valuable sample to explore ASD phenotypes and inform risk factor analyses.


Asunto(s)
Trastorno del Espectro Autista/diagnóstico , Desarrollo Infantil , Discapacidades del Desarrollo/diagnóstico , Trastorno del Espectro Autista/complicaciones , Trastorno del Espectro Autista/epidemiología , Niño , Preescolar , Discapacidades del Desarrollo/complicaciones , Femenino , Humanos , Masculino , Padres , Fenotipo
11.
Adv Emerg Nurs J ; 36(2): 145-63, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-24785668

RESUMEN

Visits to the emergency department (ED) are stressful for any patient and pose special challenges and potential barriers to care for those with autism spectrum disorder (ASD). In addition, people (both children and adults) with ASD differ in their perception of, or responses to, environmental stimuli. Some people with ASD present with sensory defensiveness that is environmentally moderated, but there is a gap in our knowledge about patterns or thresholds of stimulation that kindle behavioral responses. We systematically recorded visual and auditory stimuli in an ED. Data were collected in four areas, hallway, doorway of waiting room, chair in waiting room, and treatment room, over several weeks and times of day. The mean light intensity ranged from 127 to 184 lux. There were significant differences (F = 16.77, df = 3, p > 0.001) between the five ED locations. Mean sound levels ranged from a high of 63.291 dB in the waiting room chair to a low of 51.289 dB in the treatment room. The highest consistent level of noise was recorded while sitting in the waiting room chair (60.657-63.291 dB). The findings suggest significant differences in light and sound intensity in common ED locations, with the highest mean readings of light and noise in the waiting areas. The differences and descriptions of light and sound patterns support the need for additional studies in both the measurement of the ED environment and its role in stimulating sensory defensiveness in people with ASD.


Asunto(s)
Trastornos Generalizados del Desarrollo Infantil/terapia , Tratamiento de Urgencia , Niño , Trastornos Generalizados del Desarrollo Infantil/fisiopatología , Trastornos Generalizados del Desarrollo Infantil/psicología , Servicio de Urgencia en Hospital , Audición , Humanos , Iluminación , Ruido , Estados Unidos , Visión Ocular
12.
Disabil Health J ; 6(3): 227-35, 2013 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-23769482

RESUMEN

BACKGROUND: Transition to community (TC) is the movement out of secondary school to independent living or higher education. It is challenging for young people who have typical neurodevelopment and daunting for those who have neurodevelopmental characteristics associated with Asperger syndrome (AS). OBJECTIVE: This grounded theory study describes the phenomenon of transition to community among adolescents and young adults with AS. METHODS: Audiotaped interviews were transcribed verbatim and analyzed using constant comparison to explore the socially constructed phenomenon of TC. Our sample comprised 36 participants from four groups deemed central to the phenomenon including: individuals with AS age 18-22 years (N = 13), parents (n = 13); and five each of educators and potential employers. RESULTS: The core psychosocial problem of TC is to stay afloat while feeling "adrift." This problem was experienced by the individual with AS, and parents and others were observers and facilitators. Adolescents, with the support of parents, teachers and sympathetic employers solved this problem by using three psychosocial processes of structuring, anchoring, and embarking. CONCLUSIONS: Clinicians who work with this population, potential employers, and educators are stakeholders who can apply our findings to the development of effective and personalized transition services. Findings from our study are grounded in the experiences of participants, and therefore, have explicit practical value. The conceptual model of TC can be used by health care providers, educators, employers and parents to guide adolescents as they transition to community.


Asunto(s)
Adaptación Psicológica , Síndrome de Asperger , Vida Independiente , Características de la Residencia , Apoyo Social , Adolescente , Adulto , Síndrome de Asperger/psicología , Educación , Empleo , Femenino , Humanos , Vida Independiente/psicología , Entrevistas como Asunto , Masculino , Padres , Universidades , Adulto Joven
13.
J Am Acad Child Adolesc Psychiatry ; 52(4): 401-413.e8, 2013 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-23582871

RESUMEN

OBJECTIVE: The DSM-IV-TR specifies 12 behavioral features that can occur in hundreds of possible combinations to meet diagnostic criteria for autism spectrum disorder (ASD). This paper describes the frequency and variability with which the 12 behavioral features are documented in a population-based cohort of 8-year-old children under surveillance for ASD, and examines whether documentation of certain features, alone or in combination with other features, is associated with earlier age of community identification of ASD. METHOD: Statistical analysis of behavioral features documented for a population-based sample of 2,757 children, 8 years old, with ASD in 11 geographically-defined areas in the US participating in the Autism and Developmental Disabilities Monitoring Network in 2006. RESULTS: The median age at ASD identification was inversely associated with the number of documented behavioral features, decreasing from 8.2 years for children with only seven behavioral features to 3.8 years for children with all 12. Documented impairments in nonverbal communication, pretend play, inflexible routines, and repetitive motor behaviors were associated with earlier identification, whereas impairments in peer relations, conversational ability, and idiosyncratic speech were associated with later identification. CONCLUSIONS: The age dependence of some of the behavioral features leading to an autism diagnosis, as well as the inverse association between age at identification and number of behavioral features documented, have implications for efforts to improve early identification. Progress in achieving early identification and provision of services for children with autism may be limited for those with fewer ASD behavioral features, as well as features likely to be detected at later ages.


Asunto(s)
Trastornos Generalizados del Desarrollo Infantil/diagnóstico , Trastornos Generalizados del Desarrollo Infantil/fisiopatología , Factores de Edad , Niño , Trastornos Generalizados del Desarrollo Infantil/epidemiología , Humanos , Tamizaje Masivo , Vigilancia de la Población , Estados Unidos/epidemiología
14.
J Pediatr Nurs ; 28(6): 563-74, 2013.
Artículo en Inglés | MEDLINE | ID: mdl-23541737

RESUMEN

In this thematic content analysis we examined the expectations, and perceived facilitators of (referred to as bridges) and barriers to transition to community as reported by adolescents and young adults with Asperger syndrome. Participants were adolescents/young adults, ages 18-23 years were from the East Coast of the United States. Seventy percent of adolescents hoped for employment (n = 10). Thirty percent desired to find a partner and raise a family. Perceived barriers were: self-assessed behavioral problems, self-assessed associated features, other personal factors, and institutional factors. Bridges to facilitate transition were: accommodations in the community, cognitive abilities, personal qualities/strengths, and mentor's qualities.


Asunto(s)
Síndrome de Asperger/psicología , Relaciones Interpersonales , Conducta Social , Adolescente , Adulto , Empleo , Femenino , Humanos , Masculino , Servicios de Salud Mental/estadística & datos numéricos , Aceptación de la Atención de Salud/psicología , Enfermería Pediátrica , Atención Primaria de Salud , Apoyo Social , Adulto Joven
15.
J Nurs Scholarsh ; 45(1): 69-78, 2013 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-23368711

RESUMEN

PURPOSE: To present the current state of the evidence regarding translation of genetics (the study of single genes) and genomics (the study of all genes and gene-gene or gene-environment interactions) into health care of children with autism spectrum disorder (ASD). METHODS: This article presents an overview of ASD as an international health challenge, the emerging science related to broad diagnostic criteria, and the role of the nurse in research, education, and practice. FINDINGS: Much progress is being made in the understanding of genetics and genomics of ASD. Environmental factors are thought to contribute to the risk of developing ASD by interacting with a number of genes in different ways, thus suggesting causal heterogeneity. The rising identified prevalence of ASD, the changing diagnostic criteria for ASD, and the complexity of the core and associated features have made it difficult to define the ASD phenotype (observable behaviors that result from gene-environment interaction). Because early identification improves opportunities for intervention, researchers are looking for a useful biomarker to detect ASD. This search is complicated by the likelihood that there are multiple causes for multiple expressions that are defined as the autism spectrum. CONCLUSIONS: To date, genetic and genomic research on ASD have underscored the complexity of the causes of ASD indicating that there are very complex genetic processes involved that are still not well understood. CLINICAL RELEVANCE: Nurses will benefit from new knowledge related to early identification, diagnosis, and implications for the family to promote early intervention. Families who have a child with ASD will require nursing support for advocacy for optimal health outcomes.


Asunto(s)
Trastornos Generalizados del Desarrollo Infantil/genética , Trastornos Generalizados del Desarrollo Infantil/enfermería , Interacción Gen-Ambiente , Genoma Humano , Genómica , Investigación Biomédica , Niño , Pruebas Genéticas , Humanos , Rol de la Enfermera , Educación del Paciente como Asunto , Factores de Riesgo
16.
Nurs Clin North Am ; 47(4): 529-45, 2012 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-23137604

RESUMEN

This article presents an argument for research on the practical outcomes of genetics education in professional nursing programs. Nurse educators should aggressively conduct educational outcomes research on the translation of genetics core competencies at all levels of clinical practice. There should be a systematic examination of the factors, that influence graduate nurses' applications of concepts to patient care including type of educational preparation in genetics. The best way to improve health is to understand normal genome biology and its relationship to disease biology. Assuring genetics and genomic literacy among all nurses is a crucial task for contemporary nursing education programs.


Asunto(s)
Competencia Clínica , Educación en Enfermería/organización & administración , Genómica/educación , Humanos , Investigación en Educación de Enfermería , Investigación en Evaluación de Enfermería
17.
J Autism Dev Disord ; 42(10): 2121-40, 2012 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-22350336

RESUMEN

The Study to Explore Early Development (SEED), a multisite investigation addressing knowledge gaps in autism phenotype and etiology, aims to: (1) characterize the autism behavioral phenotype and associated developmental, medical, and behavioral conditions and (2) investigate genetic and environmental risks with emphasis on immunologic, hormonal, gastrointestinal, and sociodemographic characteristics. SEED uses a case-control design with population-based ascertainment of children aged 2-5 years with an autism spectrum disorder (ASD) and children in two control groups-one from the general population and one with non-ASD developmental problems. Data from parent-completed questionnaires, interviews, clinical evaluations, biospecimen sampling, and medical record abstraction focus on the prenatal and early postnatal periods. SEED is a valuable resource for testing hypotheses regarding ASD characteristics and causes.


Asunto(s)
Trastorno Autístico/epidemiología , Discapacidades del Desarrollo/epidemiología , Trastorno Autístico/etiología , Trastorno Autístico/psicología , Estudios de Casos y Controles , Preescolar , Discapacidades del Desarrollo/etiología , Discapacidades del Desarrollo/psicología , Femenino , Humanos , Masculino , Padres , Fenotipo , Prevalencia , Encuestas y Cuestionarios
18.
Disabil Health J ; 5(1): 9-17, 2012 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-22226293

RESUMEN

BACKGROUND: Racial differences are documented in the timing and type of autism spectrum disorder (ASD) diagnosis among white and African American children. Differences in clinical presentation by race may contribute to these disparities. This study explores documented differences in core ASD symptoms and associated behavioral features among African American and white children. METHODS: This project is a secondary data analysis from the Pennsylvania Autism and Developmental Disabilities Surveillance Program and utilized methodology that evaluates existing records, reviews, and codes for DSM-IV criteria for ASD and 12 associated behavioral features. The sample comprised 343 children meeting surveillance case definition for ASD, from 3 population-based cohorts of children in Philadelphia County. RESULTS: A higher frequency of white children compared to African American children with ASD have documented DSM-IV criteria of inflexible adherence to nonfunctional routines/rituals (92% vs 81%; p = .005) and persistent preoccupation with parts of objects (67% vs 50%; p = .002). A higher frequency of white children with ASD compared to African American children with ASD have documented abnormal motor development (74% vs 60%; p = .008) and odd responses to sensory stimuli (76% vs 51%; p < .001). There were no significant differences in externalizing behaviors or reciprocal social interaction. CONCLUSIONS: This study suggests differences in the types of ASD symptoms and associated behavioral features exhibited by African American as compared to white children with ASD. Further research is needed to determine if these differences contribute to disparities in the timing or type of ASD diagnosis.


Asunto(s)
Síntomas Conductuales/etnología , Negro o Afroamericano , Trastornos Generalizados del Desarrollo Infantil/etnología , Población Blanca , Síntomas Conductuales/diagnóstico , Niño , Conducta Infantil/etnología , Desarrollo Infantil , Trastornos Generalizados del Desarrollo Infantil/diagnóstico , Conducta Compulsiva/diagnóstico , Conducta Compulsiva/etnología , Discapacidades del Desarrollo , Manual Diagnóstico y Estadístico de los Trastornos Mentales , Femenino , Disparidades en el Estado de Salud , Humanos , Masculino , Destreza Motora , Conducta Obsesiva/diagnóstico , Conducta Obsesiva/etnología , Pennsylvania , Philadelphia , Prevalencia , Sensación
19.
J Contin Educ Nurs ; 43(4): 169-76, 2012 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-22106877

RESUMEN

The prevalence of autism spectrum disorders (ASDs) is 1 in 110 in the United States. Nurses encounter patients with ASDs across practice settings. This article describes the results of an evaluation research pilot that assessed the perceived value to nurses of a continuing education program on comprehensive care of people with ASDs. Two 2-day workshops were offered in 2010. Of the 37 participants, 92% were female; 35% worked in pediatrics, 35% worked in adult care, and 30% were administrators; and 33% had practiced for 11 years or more. Six months after the course, 74% shared information with their employers and 94% shared information with coworkers. Although 77% incorporated learning into practice, 23% reported that they had not yet had the opportunity to do so. All participants valued the course content. Future programs can target audiences in specific service areas or those who work with specific populations. This pilot provided useful feedback on the nursing care of people with ASDs that is relevant to a variety of potential audiences. Continuing education programs can target sponsors, donors, client groups, administrators, and staff as they prepare to care for patients with ASDs.


Asunto(s)
Trastornos Generalizados del Desarrollo Infantil/enfermería , Educación Continua en Enfermería/organización & administración , Conocimientos, Actitudes y Práctica en Salud , Personal de Enfermería en Hospital/educación , Enfermería Pediátrica/educación , Adulto , Niño , Femenino , Humanos , Masculino , Investigación en Evaluación de Enfermería , Proyectos Piloto
20.
J Immigr Minor Health ; 13(6): 1055-68, 2011 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-21512747

RESUMEN

The purposes of this exploratory pilot were to describe perceived barriers to participation in cervical cancer prevention research, and identify culturally-appropriate communication strategies to recruit Asian women into cancer prevention research. This thematic analysis of transcripts, from focus groups and in-depth interviews, was conducted in English, Vietnamese, and Mandarin Chinese, at a community clinic in Philadelphia, Pennsylvania. Thirty participants were either Vietnamese (35%) or Chinese (65%). Mean age was 36.8 (SD 9.9 years). Reasons for non-participation were: lack of time, inconvenience, mistrust of institutions and negative experiences, lack of translated materials, feeling intimidated by English, and the lack of translation of key words or terms. Enhancers of participation were: endorsement by a spouse, monetary compensation, and a personalized approach that offers a benefit for Asian women. To increase participation, first one must remove language barriers and, preferably, use specific dialects. Second, one must specify if benefits are indirectly or directly related to the family or cultural group. Asian research participants in our study consistently expressed that a significant motivator was their desire to be of help, in some way, to a family member or to the Asian community in general.


Asunto(s)
Asiático , Participación de la Comunidad , Accesibilidad a los Servicios de Salud , Investigación sobre Servicios de Salud , Neoplasias del Cuello Uterino/prevención & control , Adulto , Femenino , Humanos , Entrevistas como Asunto , Persona de Mediana Edad , Philadelphia , Proyectos Piloto , Neoplasias del Cuello Uterino/etnología , Salud de la Mujer
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