The Experience of Caregivers of Children With Down Syndrome
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT00695695|
Recruitment Status : Completed
First Posted : June 12, 2008
Last Update Posted : October 15, 2019
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.
|Condition or disease|
|Study Type :||Observational|
|Actual Enrollment :||546 participants|
|Official Title:||The Role of Hope in Adaptation to Uncertainty: The Experience of Caregivers of Children With Down Syndrome|
|Study Start Date :||May 14, 2008|
|Study Completion Date :||February 3, 2014|
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00695695
|United States, Maryland|
|National Human Genome Research Institute (NHGRI), 9000 Rockville Pike|
|Bethesda, Maryland, United States, 20892|
|Principal Investigator:||Barbara B Biesecker||National Human Genome Research Institute (NHGRI)|