The Role of Family Functioning in Adaptation to Being a Caregiver of an Individual With Rett Syndrome

NCT00891956 | Completed

• 2 other identifiers: 99990913209-HG-N132
• Study Type: observational
• Target: 426
• Locations: 1 country
• Sites: 3

Brief Summary

Background:

• Rett syndrome (RS) is a panethnic (affecting all ethnicities) neurodevelopmental (impairment of the growth and development of the brain) disorder affecting primarily females. RS is characterized by the loss of intellectual functioning, fine and gross motor skills, and communicative abilities after a period of seemingly normal development.
• Caregivers of individuals with RS face many psychosocial challenges. The stressors can be grouped into the following six categories: emotional difficulties, health-related stressors, uncertainty about their daughter s illness, rejection by their social environment, lack of available or competent experts, and unfavorable comparison with healthy children.
• Researchers are making a significant contribution to the adaptation literature with a focus on family functioning and to the little psychosocial research that exists on families with RS.
• Researchers hope to narrow down the most important areas on which to focus for intervention strategies in families with RS. Objectives:
• To describe family functioning, perceived illness burden, self-efficacy, types of coping methods, and adaptation in caregivers of individuals with RS to examine the relationships between these variables and the outcomes of family functioning and adaptation.
• To examine the extent to which appraisals of being a caregiver of an individual with RS and methods of coping are associated with family functioning.
• To examine the extent to which appraisals of being a caregiver of an individual with RS, methods of coping, and family functioning are associated with caregiver adaptation. Eligibility: \- Eligibility is based on answering yes to the following three questions: Are you 18 years old or older? Are you the caregiver of a child diagnosed with Rett Syndrome? and Does the child with Rett Syndrome currently reside in your home with you? Design:
• Participants in this cross-sectional research design will answer a quantitative survey that includes some open-ended questions. The cross-sectional study involves a one-time self-administered questionnaire that takes approximately 20 to 30 minutes to complete.
• The survey will be available in paper and electronic versions and includes demographics questions, measures of perceived illness burden, parental self-efficacy, coping methods, family functioning, and adaptation. Participants also will answer open-ended questions related to the individual s diagnosis.
• Participants may withdraw from the study at any point up until submission of the survey and may skip any question.
• Participants who experience psychological distress as a result of taking the survey are advised to contact the researcher. Study coordinators at the various clinics from which participants will be recruited will be notified of the possibility of adverse events and instructed to direct any members who experience distress to the appropriate professional services.
• Participants will receive a small financial compensation for completing the survey.

Conditions

Rett Syndrome

Keywords

Rett Syndrome

Eligibility Criteria

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

You may qualify if:

• The study population will consist of men and women ages 18 or older who are the primary caregivers of a child with Rett Syndrome.
• The parent may be a biological or adoptive parent or other primary caregiver and the child must reside with the primary caregiver.
• Individuals of all ethnic, religious, socioeconomic, and educational backgrounds and from a variety of geographic locations in the United States will be included.

You may not qualify if:

• Participants must be able to read and write in English, as it is essential for the researchers to be able to understand participants responses.

Sponsors & Collaborators

• National Human Genome Research Institute (NHGRI): lead

Study Sites (3)

University of Alabama

Birmingham, Alabama, United States

Location

Kennedy Krieger Institute

Baltimore, Maryland, 21205, United States

Location

Baylor College of Medicine

Houston, Texas, 77030, United States

Location

Related Publications (3)

• Hagberg B. Rett syndrome: clinical peculiarities and biological mysteries. Acta Paediatr. 1995 Sep;84(9):971-6. doi: 10.1111/j.1651-2227.1995.tb13809.x.

  PMID: 8652969 BACKGROUND

• Lotan M, Ben-Zeev B. Rett syndrome. A review with emphasis on clinical characteristics and intervention. ScientificWorldJournal. 2006 Dec 6;6:1517-41. doi: 10.1100/tsw.2006.249.

  PMID: 17160339 BACKGROUND

• Weaving LS, Ellaway CJ, Gecz J, Christodoulou J. Rett syndrome: clinical review and genetic update. J Med Genet. 2005 Jan;42(1):1-7. doi: 10.1136/jmg.2004.027730.

  PMID: 15635068 BACKGROUND

MeSH Terms

Conditions

Rett Syndrome

Condition Hierarchy (Ancestors)

X-Linked Intellectual Disability; Intellectual Disability; Neurobehavioral Manifestations; Neurologic Manifestations; Nervous System Diseases; Genetic Diseases, X-Linked; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Heredodegenerative Disorders, Nervous System

Study Officials

• Barbara B Biesecker

  National Human Genome Research Institute (NHGRI)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Time Perspective: PROSPECTIVE
• Sponsor Type: NIH
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: April 30, 2009
• First Posted: May 1, 2009
• Study Start: April 24, 2009
• Study Completion: January 13, 2016
• Last Updated: December 9, 2019

Record last verified: 2016-01-13

Locations

US (3)