The Experience of Caregivers of Children With Down Syndrome

This study has been completed.
Sponsor:
Information provided by:
National Institutes of Health Clinical Center (CC)
ClinicalTrials.gov Identifier:
NCT00695695
First received: June 11, 2008
Last updated: February 4, 2014
Last verified: February 2014
  Purpose

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
Down Syndrome

Study Type: Observational
Study Design: Time Perspective: Prospective
Official Title: The Role of Hope in Adaptation to Uncertainty: The Experience of Caregivers of Children With Down Syndrome

Resource links provided by NLM:


Further study details as provided by National Institutes of Health Clinical Center (CC):

Estimated Enrollment: 600
Study Start Date: May 2008
Estimated Study Completion Date: February 2014
Detailed Description:

The proposed study aims to explore the relationships between perceived uncertainty, hope and adaptation in caregivers of children with Down Syndrome (DS). There are often uncertainties surrounding the prognosis of DS which extend into various aspects of the child s life. In addition to the possibility of chronic medical conditions associated with the syndrome, there is also uncertainty related to the level of independence and cognitive, social and behavioral functioning that the child will achieve. It is not fully understood how caregivers adapt to having a child with DS in light of the uncertainty and the particular challenges associated with this condition. While a high level of perceived uncertainty may be seen as a threat to adaptation, there is also evidence that caregivers may find benefits in uncertainty. Literature suggests that a person s level of hope influences how the perceived uncertainty is appraised and that hope is also related to the process of adaptation. There is no research that systematically explores the relationship between perceived uncertainty, hope, and adaptation. This study s conceptual framework is based on Lazarus & Folkman s Transactional Model of Stress and Coping and is also informed by Snyder s conceptualization of hope and Mishel s theory of perceived uncertainty in illness. A cross-sectional research design will quantitatively explore the relationships between perceived uncertainty, hope, and adaptation. In addition, an open-ended section will be included to qualitatively describe the focus of caregivers hope for their child and how the focus of hope relates to the degree of hope. Participants will be recruited from DS support groups, website postings, listservs, and clinic patient lists. They will have the option of completing either a paper or online version of the survey, or completing the survey by phone. The main outcome variable is psychological adaptation to being a care giver for a child with DS.

  Eligibility

Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Criteria
  • INCLUSION CRITERIA:

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.

EXCLUSION CRITERIA:

None

  Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00695695

Locations
United States, Maryland
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
Bethesda, Maryland, United States, 20892
Sponsors and Collaborators
Investigators
Principal Investigator: Barbara B Biesecker National Human Genome Research Institute (NHGRI)
  More Information

Publications:
ClinicalTrials.gov Identifier: NCT00695695     History of Changes
Other Study ID Numbers: 999908142, 08-HG-N142
Study First Received: June 11, 2008
Last Updated: February 4, 2014
Health Authority: United States: Federal Government

Keywords provided by National Institutes of Health Clinical Center (CC):
Parents
Down Syndrome
Hope
Uncertainty
Adaptation
DS
Survey

Additional relevant MeSH terms:
Down Syndrome
Mental Retardation
Neurobehavioral Manifestations
Neurologic Manifestations
Nervous System Diseases
Abnormalities, Multiple
Congenital Abnormalities
Chromosome Disorders
Genetic Diseases, Inborn

ClinicalTrials.gov processed this record on April 22, 2014