Ignite Creation Date:
2024-05-05 @ 9:29 PM
Last Modification Date:
2024-10-26 @ 10:04 AM
Study NCT ID:
NCT00891956
Status:
COMPLETED
Last Update Posted:
2019-12-09
First Post:
2009-04-30
Brief Title:
The Role of Family Functioning in Adaptation to Being a Caregiver of an Individual With Rett Syndrome
Sponsor:
National Human Genome Research Institute NHGRI
Organization:
National Institutes of Health Clinical Center CC
Study Overview
Official Title:
The Role of Family Functioning in Adaptation to Being a Caregiver of an Individual With Rett Syndrome
Status:
COMPLETED
Status Verified Date:
2016-01-13
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
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
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
Detailed Description:
This study aims to investigate the predictors of family functioning and adaptation in caregivers of individuals with Rett Syndrome RS a neurodevelopmental disorder affecting primarily females After an apparently normal prenatal and postnatal period of development individuals with RS lose intellectual functioning fine and gross motor skills including purposeful hand use and communicative abilities Individuals with RS also experience a host of other medical problems including seizures and respiratory dysfunction Prior research demonstrates that caregivers of individuals with RS experience more stress than normative samples and that family functioning plays a role in maternal mental health However there is much that is not understood about how cognitive appraisals thoughts that assess the circumstances coping methods and family functioning are related to caregiver adaptation in this population This study is based on Thompson and colleagues Transactional Stress and Coping Model which conceptualizes family functioning and adaptation to being a caregiver of an individual with RS A cross-sectional research design using quantitative methodology will explore the relationships between perceived illness burden self-efficacy coping methods family functioning and adaptation In addition an open-ended section will be included to qualitatively describe the role of family relationships on the caregivers perception of their ability to care for their child with RS Caregivers of individuals with RS will be recruited through an international RS organization a national RS educational meeting and several national RS clinics Eligible participants will be able to complete a paper or online version of the survey
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None
Secondary IDs
| Secondary ID | Type | Domain | Link |
|---|---|---|---|
| 09-HG-N132 | None | None | None |