The Role of Family Functioning in Adaptation to Being a Caregiver of an Individual With Rett Syndrome
| Status: | Completed |
|---|---|
| Conditions: | Other Indications, Neurology |
| Therapuetic Areas: | Neurology, Other |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 4/5/2019 |
| Start Date: | April 24, 2009 |
| End Date: | January 13, 2016 |
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.
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.
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.
- INCLUSION CRITERIA:
- 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.
EXCLUSION CRITERIA:
-Participants must be able to read and write in English, as it is essential for the
researchers to be able to understand participants responses.
We found this trial at
3
sites
Baylor College of Medicine Baylor College of Medicine in Houston, the only private medical school...
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Kennedy Krieger Institute While not officially part of Johns Hopkins Medicine, Kennedy Krieger Institute is...
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