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The experience of siblings of individuals with CHARGE syndrome.

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Title: The experience of siblings of individuals with CHARGE syndrome.
Authors: Vert, Rachel (AUTHOR), Olson, Tracy A. (AUTHOR), Kim, Samuel Y. (AUTHOR), Stratton, Kasee K. (AUTHOR), Hoesch, Hayley M. (AUTHOR), Hartshorne, Timothy S. (AUTHOR)
Source: Journal of Intellectual & Developmental Disability. Sep2017, Vol. 42 Issue 3, p240-248. 9p.
Subjects: Siblings, Psychological tests, Questionnaires, Children with disabilities, Family relations, Well-being, CHARGE syndrome, Psychology
Abstract: BackgroundWe investigated the experience of siblings of children with CHARGE syndrome (n = 29). Siblings of children with a disability are an understudied population, and, to our knowledge, this is the first investigation of the sibling relationship in CHARGE. MethodParticipants were asked to complete 5 measures: (a) Sibling Evaluation Questionnaire, (b) UCLA Loneliness Scale, (c) Network Orientation Scale, (d) Family Hardiness Index, and (e) Family Member Well-Being Index. ResultsParticipants accepted their sibling with CHARGE, with the relationship being neither highly negative nor positive. Although siblings reported to be somewhat less lonely, they were no less likely to access social support than college-aged peers. Participants did not indicate adjustment issues; however, more than half of the siblings reported avoiding adding to their parents’ stress. Further, they rated their own personal wellbeing very positively. ConclusionIn spite of acknowledging stress within the family, these siblings represent themselves as well adjusted with a somewhat typical sibling relationship. [ABSTRACT FROM PUBLISHER]
Copyright of Journal of Intellectual & Developmental Disability is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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DbLabel: Psychology and Behavioral Sciences Collection
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PubType: Academic Journal
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Items – Name: Title
  Label: Title
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  Data: The experience of siblings of individuals with CHARGE syndrome.
– Name: Author
  Label: Authors
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  Data: <searchLink fieldCode="AR" term="%22Vert%2C+Rachel%22">Vert, Rachel</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Olson%2C+Tracy+A%2E%22">Olson, Tracy A.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Kim%2C+Samuel+Y%2E%22">Kim, Samuel Y.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Stratton%2C+Kasee+K%2E%22">Stratton, Kasee K.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Hoesch%2C+Hayley+M%2E%22">Hoesch, Hayley M.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Hartshorne%2C+Timothy+S%2E%22">Hartshorne, Timothy S.</searchLink> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Journal+of+Intellectual+%26+Developmental+Disability%22">Journal of Intellectual & Developmental Disability</searchLink>. Sep2017, Vol. 42 Issue 3, p240-248. 9p.
– Name: Subject
  Label: Subjects
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Siblings%22">Siblings</searchLink><br /><searchLink fieldCode="DE" term="%22Psychological+tests%22">Psychological tests</searchLink><br /><searchLink fieldCode="DE" term="%22Questionnaires%22">Questionnaires</searchLink><br /><searchLink fieldCode="DE" term="%22Children+with+disabilities%22">Children with disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Family+relations%22">Family relations</searchLink><br /><searchLink fieldCode="DE" term="%22Well-being%22">Well-being</searchLink><br /><searchLink fieldCode="DE" term="%22CHARGE+syndrome%22">CHARGE syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Psychology%22">Psychology</searchLink>
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: BackgroundWe investigated the experience of siblings of children with CHARGE syndrome (n = 29). Siblings of children with a disability are an understudied population, and, to our knowledge, this is the first investigation of the sibling relationship in CHARGE. MethodParticipants were asked to complete 5 measures: (a) Sibling Evaluation Questionnaire, (b) UCLA Loneliness Scale, (c) Network Orientation Scale, (d) Family Hardiness Index, and (e) Family Member Well-Being Index. ResultsParticipants accepted their sibling with CHARGE, with the relationship being neither highly negative nor positive. Although siblings reported to be somewhat less lonely, they were no less likely to access social support than college-aged peers. Participants did not indicate adjustment issues; however, more than half of the siblings reported avoiding adding to their parents’ stress. Further, they rated their own personal wellbeing very positively. ConclusionIn spite of acknowledging stress within the family, these siblings represent themselves as well adjusted with a somewhat typical sibling relationship. [ABSTRACT FROM PUBLISHER]
– Name: AbstractSuppliedCopyright
  Label:
  Group: Ab
  Data: <i>Copyright of Journal of Intellectual & Developmental Disability is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=123514831
RecordInfo BibRecord:
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        Value: 10.3109/13668250.2016.1234594
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        Text: English
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        PageCount: 9
        StartPage: 240
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      – SubjectFull: Siblings
        Type: general
      – SubjectFull: Psychological tests
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      – SubjectFull: Questionnaires
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      – SubjectFull: Children with disabilities
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      – SubjectFull: Family relations
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      – SubjectFull: Well-being
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      – SubjectFull: CHARGE syndrome
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      – SubjectFull: Psychology
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              Text: Sep2017
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