ERIC Number: EJ1187925
Record Type: Journal
Publication Date: 2017
Pages: 9
Abstractor: As Provided
ISBN: N/A
ISSN: EISSN-1469-9532
EISSN: N/A
The Experience of Siblings of Individuals with CHARGE Syndrome
Vert, Rachel; Olson, Tracy A.; Kim, Samuel Y.; Stratton, Kasee K.; Hoesch, Hayley M.; Hartshorne, Timothy S.
Journal of Intellectual & Developmental Disability, v42 n3 p240-248 2017
Background: We 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. Method: Participants 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. Results: Participants 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. Conclusion: In spite of acknowledging stress within the family, these siblings represent themselves as well adjusted with a somewhat typical sibling relationship.
Descriptors: Siblings, Disabilities, Family Environment, Sibling Relationship, Psychological Patterns, Stress Variables, Well Being, Adjustment (to Environment), Child Rearing, Questionnaires, Measures (Individuals), Foreign Countries, Social Isolation, Peer Relationship, Gender Differences, Age Differences, Birth Order
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Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: United States; Canada
Identifiers - Assessments and Surveys: UCLA Loneliness Scale
Grant or Contract Numbers: N/A