Predictors of Caregiver Adaptation to Pervasive Developmental Disorders

NCT ID: NCT00496210

Last Updated: 2019-11-15

Basic Information

• Recruitment Status: COMPLETED
• Total Enrollment: 324 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2007-06-27
• Study Completion Date: 2015-12-07

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.

Detailed Description

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.

Conditions

Autism; Asperger's Syndrome; Rett's Disorder

Study Design

• Study Time Perspective: OTHER

Eligibility Criteria

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.

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

National Human Genome Research Institute (NHGRI)

NIH

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Principal Investigators

Barbara B Biesecker

Role: PRINCIPAL_INVESTIGATOR

National Human Genome Research Institute (NHGRI)

Locations

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

Bethesda, Maryland, United States

Countries

United States

References

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.

Reference Type: BACKGROUND

PMID: 3625467 (View on PubMed)

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.

Reference Type: BACKGROUND

PMID: 3806354 (View on PubMed)

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.

Reference Type: BACKGROUND

PMID: 3625471 (View on PubMed)

Other Identifiers

07-HG-N178

Identifier Type: -

Identifier Source: secondary_id

999907178

Identifier Type: -

Identifier Source: org_study_id