Predictors of Caregiver Adaptation to Pervasive Developmental Disorders

NCT00496210 | Completed

• 2 other identifiers: 99990717807-HG-N178
• Study Type: observational
• Target: 324
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Autism; Asperger's Syndrome; Rett's Disorder

Keywords

Adaptation; Pervasive Developmental Disorder; Autism Spectrum Disorders; Pervasive Developmental Disorders; Caregiver Adaptation

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Must be 18 or older and the primary caregiver for a child with one of the five diagnosis categorized as a pervasive developmental disorder.

You may not qualify if:

• May not be younger than 18 years of age.

Sponsors & Collaborators

• National Human Genome Research Institute (NHGRI): lead

Study Sites (1)

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

Bethesda, Maryland, 20892, United States

Location

Related Publications (3)

• Affleck G, Tennen H, Pfeiffer C, Fifield J. Appraisals of control and predictability in adapting to a chronic disease. J Pers Soc Psychol. 1987 Aug;53(2):273-9. doi: 10.1037//0022-3514.53.2.273.

  PMID: 3625467 BACKGROUND

• Baron RM, Kenny DA. The moderator-mediator variable distinction in social psychological research: conceptual, strategic, and statistical considerations. J Pers Soc Psychol. 1986 Dec;51(6):1173-82. doi: 10.1037//0022-3514.51.6.1173.

  PMID: 3806354 BACKGROUND

• Aldwin CM, Revenson TA. Does coping help? A reexamination of the relation between coping and mental health. J Pers Soc Psychol. 1987 Aug;53(2):337-48. doi: 10.1037//0022-3514.53.2.337.

  PMID: 3625471 BACKGROUND

MeSH Terms

Conditions

Autistic Disorder; Asperger Syndrome; Rett Syndrome; Child Development Disorders, Pervasive; Autism Spectrum Disorder

Condition Hierarchy (Ancestors)

Neurodevelopmental Disorders; Mental Disorders; X-Linked Intellectual Disability; Intellectual Disability; Neurobehavioral Manifestations; Neurologic Manifestations; Nervous System Diseases; Genetic Diseases, X-Linked; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Heredodegenerative Disorders, Nervous System

Study Officials

• Barbara B Biesecker

  National Human Genome Research Institute (NHGRI)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Time Perspective: OTHER
• Sponsor Type: NIH
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 3, 2007
• First Posted: July 4, 2007
• Study Start: June 27, 2007
• Study Completion: December 7, 2015
• Last Updated: November 15, 2019

Record last verified: 2015-12-07

Locations

US (1)