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ERIC Number: EJ1350006
Record Type: Journal
Publication Date: 2022-Sep
Pages: 14
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1744-6295
EISSN: EISSN-1744-6309
Rare, Epilepsy-Related Disorder Including Intellectual Disability -- A Scoping Review of Caregivers' Identified Information Needs
Tschamper, Merete Kristin; Systad, Silje
Journal of Intellectual Disabilities, v26 n3 p704-717 Sep 2022
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.
SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com
Publication Type: Journal Articles; Information Analyses
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A