The Roles of Adult Siblings of Individuals with a Profound Intellectual Disability

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  • Additional Information
    • Availability:
      Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: [email protected]; Web site: https://www.wiley.com/en-us
    • Peer Reviewed:
      Y
    • Source:
      11
    • Subject Terms:
      Foreign Countries; Adults; Siblings; Severe Intellectual Disability; Role; Health Personnel; Parents; Experience; Sharing Behavior
    • Subject Terms:
      Netherlands
    • Accession Number:
      10.1111/jar.13149
    • ISSN:
      1360-2322
      1468-3148
    • Abstract:
      Background: Adult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume. Method: We examined these roles among 58 participants from the Netherlands, who completed an online questionnaire. Results: Most participants (89.7%) assumed multiple roles, and the majority were content with their roles. Between 7% and 58% indicated that they were the only individuals providing a certain role. Shared roles primarily involved healthcare professionals, other siblings, and parents. Almost half the participants (48.2%) assigned higher scores for the amount of support provided than for the experienced burden. Conclusions: Adult siblings often assume multiple roles. The shared roles emphasise the importance of collaboration.
    • Abstract:
      As Provided
    • Publication Date:
      2023
    • Accession Number:
      EJ1396201