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

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Brief Title

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

Official Title

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

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.
    

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 Type

Observational




Condition

Rett Syndrome



Publications

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information



Estimated Enrollment

426

Start Date

April 24, 2009

Completion Date

January 13, 2016


Eligibility Criteria

        -  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.
      

Gender

All

Ages

18 Years - N/A

Accepts Healthy Volunteers

No

Contacts

Barbara B Biesecker, , 

Location Countries

United States

Location Countries

United States

Administrative Informations


NCT ID

NCT00891956

Organization ID

999909132

Secondary IDs

09-HG-N132

Responsible Party

Sponsor

Study Sponsor

National Human Genome Research Institute (NHGRI)


Study Sponsor

Barbara B Biesecker, Principal Investigator, National Human Genome Research Institute (NHGRI)


Verification Date

January 13, 2016