Exploring Stress and Coping Behaviors of the Major Carer Whose Children With Prader-Willi Syndrome

This study is not yet open for participant recruitment.

Verified by Taichung Veterans General Hospital, December 2008

Sponsored by:	Taichung Veterans General Hospital
Information provided by:	Taichung Veterans General Hospital
ClinicalTrials.gov Identifier:	NCT00808548

Purpose

Ask the 4 carers of children with Prader-willi syndrome to disclose their experiences and difficulties for searching better management and intervention

Condition	Intervention
Prader-Willi Syndrome	Other: counseling, emotional support Other: emotional support

Genetics Home Reference related topics: Prader-Willi syndrome

MedlinePlus related topics: Prader-Willi Syndrome

U.S. FDA Resources

Study Type:	Observational
Study Design:	Case-Only, Retrospective

Further study details as provided by Taichung Veterans General Hospital:

Primary Outcome Measures:

experience [ Time Frame: one year ] [ Designated as safety issue: No ]

Biospecimen Retention: None Retained

Biospecimen Description:

Estimated Enrollment:	8
Study Start Date:	December 2008
Estimated Study Completion Date:	December 2009
Estimated Primary Completion Date:	February 2009 (Final data collection date for primary outcome measure)

Groups/Cohorts	Assigned Interventions
Lifestyle counseling	Other: counseling, emotional support no Other: emotional support emotional support during the interview Other: emotional support emotional supporting during the interview

Eligibility

Ages Eligible for Study:	6 Years to 12 Years
Genders Eligible for Study:	Both
Accepts Healthy Volunteers:	No
Sampling Method:	Non-Probability Sample

Study Population

a person who care and live with childre with Prader-Willi syndrome

Criteria

Inclusion Criteria:

a person who care and live with children with Prader-Willi syndrome

Exclusion Criteria:

siblings or less-contact family
teachers

Contacts and Locations

Please refer to this study by its ClinicalTrials.gov identifier: NCT00808548

Locations

Taiwan
Taichung Veterans General Hospital
Taichung, Taiwan, 40707

Sponsors and Collaborators

Taichung Veterans General Hospital

More Information

Responsible Party:	Taichung Veterans General Hospital ( shu chien )
Study ID Numbers:	C08169, no
Study First Received:	December 15, 2008
Last Updated:	December 15, 2008
ClinicalTrials.gov Identifier:	NCT00808548
Health Authority:	Taiwan: Department of Health

Keywords provided by Taichung Veterans General Hospital:

stress
carer's experiences
Prader-willi syndrome
personal experiences

Study placed in the following topic categories:

Chromosomal abnormalities
Obesity
Chromosome Disorders
Stress
Prader-Willi syndrome
Mental Retardation
Genetic Diseases, Inborn

Abnormalities, Multiple
Neurologic Manifestations
Nutrition Disorders
Overnutrition
Prader-Willi Syndrome
Congenital Abnormalities
Neurobehavioral Manifestations

Additional relevant MeSH terms:

Pathologic Processes
Disease
Syndrome
Nervous System Diseases

ClinicalTrials.gov processed this record on January 14, 2009