The Experience of Caregivers of Children With Down Syndrome

NCT00695695 | Completed

• 2 other identifiers: 99990814208-HG-N142
• Study Type: observational
• Target: 546
• Locations: 1 country
• Sites: 1

Brief Summary

This study will explore how caregivers adjust to having a child with Down syndrome. Primary caregivers 18 years of age and older of a child with Down syndrome may be eligible for this study. Participants complete a 20- to 30-minute survey that explores the subject s thoughts and feelings about being a caregiver to a child with Down syndrome. Questions explore the impact on the subject of being a caregiver for a child with Down syndrome, the subject s uncertainties related to the child s condition and goals for the child related to social skills, behavior, learning and education, physical and mental health, independence, and other goals. It also asks questions about the caregiver, the family and the child with Down syndrome. ...

Conditions

Down Syndrome

Keywords

Parents; Down Syndrome; Hope; Uncertainty; Adaptation; DS; Survey

Eligibility Criteria

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

You may qualify if:

• Participants will be men and women ages 18 or older who are the primary caregivers of a child with Down syndrome. The parent may be a biological or adoptive parent or other primary caregiver and the child must reside with the primary caregiver.

You may not qualify if:

• None

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)

• Davis B. Mediators of the relationship between hope and well-being in older adults. Clin Nurs Res. 2005 Aug;14(3):253-72. doi: 10.1177/1054773805275520.

  PMID: 15995154 BACKGROUND

• Folkman S, Greer S. Promoting psychological well-being in the face of serious illness: when theory, research and practice inform each other. Psychooncology. 2000 Jan-Feb;9(1):11-9. doi: 10.1002/(sici)1099-1611(200001/02)9:13.0.co;2-z.

  PMID: 10668055 BACKGROUND

• Lipinski SE, Lipinski MJ, Biesecker LG, Biesecker BB. Uncertainty and perceived personal control among parents of children with rare chromosome conditions: the role of genetic counseling. Am J Med Genet C Semin Med Genet. 2006 Nov 15;142C(4):232-40. doi: 10.1002/ajmg.c.30107.

  PMID: 17068805 BACKGROUND

MeSH Terms

Conditions

Down Syndrome

Condition Hierarchy (Ancestors)

Intellectual Disability; Neurobehavioral Manifestations; Neurologic Manifestations; Nervous System Diseases; Abnormalities, Multiple; Congenital Abnormalities; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Chromosome Disorders; Genetic Diseases, Inborn

Study Officials

• Barbara B Biesecker

  National Human Genome Research Institute (NHGRI)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Time Perspective: PROSPECTIVE
• Sponsor Type: NIH

Study Record Dates

• First Submitted: June 11, 2008
• First Posted: June 12, 2008
• Study Start: May 14, 2008
• Study Completion: February 3, 2014
• Last Updated: December 17, 2019

Record last verified: 2014-02-03

Locations

US (1)