The Evaluation of Care Demand and Intervention Models for Individuals With ASD in Taiwan
Condition: Autism Spectrum Disorder
MeSH terms: Autism Spectrum Disorder
Study type: Observational

Summary: 
      The prevalence of autism in Taiwan has been significantly increasing over this decade. Though
      early intervention program and special and resource education have been applied in helping
      individuals with autism in Taiwan, studies regarding autism in this country so far focus
      mostly on the prevalence and demographics in restricted populations, diagnostic category,
      single case observation, and clinical research. Although the data of needs of care and
      intervention models in autism emerges in Western countries, there is a lack of such data in
      Taiwan. Due to the high prevalence, long-term impairing and lack of effective prevention,
      detection, and treatment for autism, tremendous of the resource is needed to be given to
      individuals with autism. However, the investigators do not know the gap between the need and
      provided care in currently. This study aims to understand the current state of needs of care
      and intervention in autism from different stakeholders to inform and improve the health care
      policies for autism and to establish a holistic care/intervention model for autism in Taiwan.
    

Detailed description: 
      This study will enroll individuals with autism and their family members from autism-related
      medical, nongovernmental organizations, and general educational settings, where from
      elementary schools to colleges, in Taiwan. For patients and their family, the investigators
      will enroll total 2000 adult individuals with autism and their family members for the
      questionnaire survey. The needs of assessment and care, and intervention models in autism
      will be examined using the Chinese version of Camberwell Assessment of Need, autistic traits
      assessment, emotional difficulty questionnaire, quality of life and Self-administered
      questionnaire with different versions for stakeholders. The guides for parents and clinicians
      on autism will be discussed with the patient and family representatives and developed by
      different autism stakeholders, experts, and scholars based on regular research meetings.
      Quantitative analyses will be conducted to understand the need and difficulty of care and
      interventions in autism across different developmental stage.

      The investigators anticipate to find differences in care needs by personal characteristics.
      The survey of the care needs of autism will provide family members, medical and nursing
      personnel, and related caregivers more information about understanding their care
      requirements. These results will help the government for the formulation of policies related
      to early treatment and long-term care. Finally, the guides for parents and clinician on
      autism would be suggested references.
    

Observational model: Case-Only
Time perspective: Cross-Sectional
Sampling method: Non-Probability Sample
Study population: 
        For patients and their family, we will enroll total 2000 adult individuals with autism and
        their family members for the questionnaire survey. The needs of assessment and care, and
        intervention models in autism will be examined using the Chinese version of Camberwell
        Assessment of Need, autistic traits assessment, emotional difficulty questionnaire, quality
        of life and Self-administered questionnaire with different versions for stakeholders.