The experience of siblings of individuals with CHARGE syndrome

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.