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"There is No Help:" Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism.
Ferguson, Emily F; Barnett, Miya L; Goodwin, Jon W; Vernon, Ty W.
Afiliación
  • Ferguson EF; Division of Child and Adolescent Psychiatry, Department of Psychiatry and Behavioral Sciences, School of Medicine, Stanford University, 401 Quarry Rd, Stanford, CA, 94305-5719, USA. eferguso@stanford.edu.
  • Barnett ML; University of California, Santa Barbara, CA, USA.
  • Goodwin JW; University of California, Santa Barbara, CA, USA.
  • Vernon TW; University of California, Santa Barbara, CA, USA.
J Autism Dev Disord ; 2024 Jul 04.
Article en En | MEDLINE | ID: mdl-38963473
ABSTRACT
The underrepresentation of individuals with profound autism (who require 24/7 access to care) in autism research has resulted in limited knowledge about their service needs and a lack of evidence-based practices tailored to those needs. This study explored caregiver perspectives on service needs, barriers to accessing care, and treatment priorities to guide treatment development and improvement of service delivery. A sequential mixed-methods design integrated quantitative survey data (n = 423; Mage = 18.89 years; 26.7% female) with qualitative interviews (n = 20) with caregivers of adolescents and adults with profound autism. Quantitative findings indicated regular socialization opportunities were the most frequently endorsed unmet service need (60.3% of caregivers), followed by primary health care with autism-trained staff (59.3%), social skills instruction (55.8%), life skills instruction (51.3%), and behavioral support (47.3%). Higher likelihood of needing social activity groups was associated with elevated emotional reactivity, higher language level, minoritized ethnicity, and lower household income. Greater need for specialized primary health care was associated with lower income, while the need for social and life skills instruction was associated with increased age and elevated dysphoria. Qualitative analysis identified 10 themes that converged and expanded quantitative findings by highlighting a pervasive shortage of individualized, goal-oriented services, common barriers to care, and the priority of developing centralized treatment settings that coordinate care throughout adulthood. This study identified pressing service needs for adolescents and adults with profound autism in the United States. These insights are crucial for improving the accessibility and quality of clinical care.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: J Autism Dev Disord Año: 2024 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Estados Unidos
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: J Autism Dev Disord Año: 2024 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Estados Unidos