Predictors of Caregiver Adaptation to Pervasive Developmental Disorders

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:

* How being a caregiver for a child with a PDD has impacted the caregiver. * How much control the caregiver feels that he or she or others have over certain aspects of their child s PDD. * What the caregiver thinks caused the child s PDD. * What coping techniques the caregiver uses in caring for a child with a PDD. * How uncertain the caregiver feels about his or her child s PDD. * What the caregiver feels about him- or herself as a caregiver of a child with a PDD. * General questions about the caregiver, his or her family and the child with a PDD.

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Key information

Conditions

Autism Asperger Syndrome Asperger's Syndrome Autism Spectrum Disorder Autistic Disorder Child Development Disorders, Pervasive Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Genetic Diseases, X-Linked Heredodegenerative Disorders, Nervous System Intellectual Disability Mental Disorders Nervous System Diseases Neurobehavioral Manifestations Neurodevelopmental Disorders Neurologic Manifestations Rett Syndrome Rett's Disorder X-Linked Intellectual Disability

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

National Human Genome Research Institute (NHGRI), 9000 Rockville Pike

Bethesda, Maryland, 20892, United States

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

INCLUSION CRITERIA:

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.

Sponsors and collaborators

Lead sponsor

National Human Genome Research Institute (NHGRI)

Nih

Registry information

Official study title

Understanding Caregiver Adaptation to Pervasive Developmental Disorders

Important dates

Study start: 2007
Study completion: 2015
First posted: Jul 4, 2007
Registry last updated: Nov 15, 2019

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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