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Sponsored by: |
National Human Genome Research Institute (NHGRI) |
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Information provided by: | National Institutes of Health Clinical Center (CC) |
ClinicalTrials.gov Identifier: | NCT00496210 |
This study will explore predictors of how caregivers might adapt to children diagnosed with a pervasive developmental disorder (PDD), including autism, Asperger's syndrome, childhood disintegrative disorder, Rett's disorder or other not specified PDD. PDD presents particular challenges for caregivers because of the communication and socialization challenges of affected children and because of the uncertainty surrounding the cause, prognosis and recurrence risks.
People 18 years of age or older who are the primary caregiver for a child diagnosed with a PDD may be eligible for this study. Participants fill out a survey, either online or in hard copy, that includes information in the following categories:
Condition |
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Autism Asperger's Syndrome Rett's Disorder |
Study Type: | Observational |
Official Title: | Understanding Caregiver Adaptation to Pervasive Developmental Disorders |
Estimated Enrollment: | 600 |
Study Start Date: | June 2007 |
This study aims to understand the predictors of adaptation among primary caregivers of children with a pervasive developmental disorder (PDD). PDD presents particular challenges for caregivers because of the communication and socialization challenges of affected children, as well as the uncertainty surrounding the cause, prognosis and recurrence risks. The literature suggests that these challenges may make the process of adapting to having a child with a PDD different than it is for other chronic conditions. This study of caregivers is based on Lazarus and Folkman's Transactional Model of Stress and Coping. A cross-sectional design will be used to investigate the relationships among causal attributions, control perceptions, coping and adaptation. Caregivers will be recruited from support groups, listservs and magazines targeted to autism and other PDDs. Participants will be asked to complete either a web-based or paper survey. The main outcome measure is psychological adaptation to caregiving a child with PDD.
Ages Eligible for Study: | 18 Years and older |
Genders Eligible for Study: | Both |
Accepts Healthy Volunteers: | No |
Must be 18 or older and the primary caregiver for a child with one of the five diagnosis categorized as a pervasive developmental disorder.
EXCLUSION CRITERIA:
May not be younger than 18 years of age.
Study ID Numbers: | 999907178, 07-HG-N178 |
Study First Received: | July 3, 2007 |
Last Updated: | March 26, 2009 |
ClinicalTrials.gov Identifier: | NCT00496210 History of Changes |
Health Authority: | United States: Federal Government |
Adaptation Pervasive Developmental Disorder Autism Spectrum Disorders |
Pervasive Developmental Disorders Autism Spectrum Disorders Caregiver Adaptation |
Developmental Disabilities Asperger Syndrome Neurodegenerative Diseases Child Development Disorders, Pervasive Mental Retardation Rett Syndrome Heredodegenerative Disorders, Nervous System Genetic Diseases, Inborn |
Autistic Disorder Mental Disorders Mental Disorders Diagnosed in Childhood Genetic Diseases, X-Linked Neurologic Manifestations Autism Neurobehavioral Manifestations |
Developmental Disabilities Disease Asperger Syndrome Nervous System Diseases Neurodegenerative Diseases Mental Retardation Child Development Disorders, Pervasive Rett Syndrome Pathologic Processes Heredodegenerative Disorders, Nervous System |
Genetic Diseases, Inborn Autistic Disorder Mental Disorders Syndrome Mental Disorders Diagnosed in Childhood Genetic Diseases, X-Linked Neurologic Manifestations Mental Retardation, X-Linked Neurobehavioral Manifestations |