Rare, Epilepsy-Related Disorder Including Intellectual Disability -- A Scoping Review of Caregivers' Identified Information Needs

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  • Author(s): Tschamper, Merete Kristin (ORCID Tschamper, Merete Kristin (ORCID 0000-0002-7167-1130); Systad, Silje
  • Language:
    English
  • Source:
    Journal of Intellectual Disabilities. Sep 2022 26(3):704-717.
  • Publication Date:
    2022
  • Document Type:
    Journal Articles
    Information Analyses
  • Additional Information
    • Availability:
      SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: [email protected]; Web site: https://sagepub.com
    • Peer Reviewed:
      Y
    • Source:
      14
    • Subject Terms:
      Intellectual Disability; Epilepsy; Caregivers; Access to Information; Information Needs; Caregiver Attitudes; Genetic Disorders; Knowledge Level; Coping; Interdisciplinary Approach
    • Accession Number:
      10.1177/17446295211002348
    • ISSN:
      1744-6295
      1744-6309
    • Abstract:
      Persons with rare, epilepsy-related disorders often have intellectual disability and need long-term care. Informal and formal caregivers need information in order to care for the persons in a safe way. Aims: The aims of this review were: (1) to obtain an overview of caregiver-reported information needs; and (2) to investigate if there are information needs that are unique for caregivers of persons with rare epilepsies. Method: We followed the scoping review framework outlined by Arksey and O'Malley and the preferred reporting items outlined by PRISMA. Results: Among the 17 articles that met the inclusion criteria, 5 included caregivers of persons with rare epilepsies. Categories of information needs: (1) Medical information; (2) Information on how to cope with emotional distress; (3) Experiential information from peers; and (4) Interdisciplinary information exchange. The need for disorder-specific information seemed particularly important for caregivers of persons with rare epilepsies. Conclusion: There is a need for further studies, particularly on formal caregivers' information needs.
    • Abstract:
      As Provided
    • Publication Date:
      2022
    • Accession Number:
      EJ1350006