Clinical trial NCT00496210: Predictors of Caregiver Adaptation to Pervasive Developmental Disorders
Official title: Understanding Caregiver Adaptation to Pervasive Developmental Disorders
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Autism
Asperger's Syndrome
Rett's Disorder
Keywords: Adaptation
Pervasive Developmental Disorder
Autism Spectrum Disorders
Pervasive Developmental Disorders
Caregiver Adaptation
Lead sponsor: National Institutes of Health Clinical Center (CC)
Sponsor class: NIH
First posted: 2007-07-04
Enrollment: 324
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Time perspective: OTHER

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.

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.

Primary outcomes:
Secondary outcomes:
Other outcomes:
Locations:
city: Bethesda
country: United States
facility: National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
state: Maryland
Study officials:
affiliation: National Human Genome Research Institute (NHGRI)
name: Barbara B Biesecker
role: PRINCIPAL_INVESTIGATOR
References:
citation: 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.
citation: 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.
citation: 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.