The Role of Family Functioning in Adaptation to Being a Caregiver of an Individual With Rett Syndrome
|ClinicalTrials.gov Identifier: NCT00891956|
Recruitment Status : Completed
First Posted : May 1, 2009
Last Update Posted : April 5, 2018
- 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.
- 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 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?
- 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.
|Condition or disease|
|Study Type :||Observational|
|Actual Enrollment :||426 participants|
|Official Title:||The Role of Family Functioning in Adaptation to Being a Caregiver of an Individual With Rett Syndrome|
|Study Start Date :||April 24, 2009|
|Study Completion Date :||January 13, 2016|
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00891956
|United States, Alabama|
|University of Alabama|
|Birmingham, Alabama, United States|
|United States, Maryland|
|Kennedy Krieger Institute|
|Baltimore, Maryland, United States, 21205|
|United States, Texas|
|Baylor College of Medicine|
|Houston, Texas, United States, 77030|
|Principal Investigator:||Barbara B Biesecker||National Human Genome Research Institute (NHGRI)|