Predictors of Caregiver Adaptation to Pervasive Developmental Disorders

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Brief Title

Predictors of Caregiver Adaptation to Pervasive Developmental Disorders

Official Title

Understanding Caregiver Adaptation to Pervasive Developmental Disorders

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.
    


Study Type

Observational




Condition

Autism



Publications

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information



Estimated Enrollment

324

Start Date

June 27, 2007

Completion Date

December 7, 2015


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.
      

Gender

All

Ages

18 Years - N/A

Accepts Healthy Volunteers

No

Contacts

Barbara B Biesecker, , 

Location Countries

United States

Location Countries

United States

Administrative Informations


NCT ID

NCT00496210

Organization ID

999907178

Secondary IDs

07-HG-N178

Responsible Party

Sponsor

Study Sponsor

National Human Genome Research Institute (NHGRI)


Study Sponsor

Barbara B Biesecker, Principal Investigator, National Human Genome Research Institute (NHGRI)


Verification Date

December 7, 2015