Literaturnachweis - Detailanzeige
| Autor/inn/en | Tschamper, Merete Kristin; Systad, Silje |
|---|---|
| Titel | Rare, Epilepsy-Related Disorder Including Intellectual Disability -- A Scoping Review of Caregivers' Identified Information Needs |
| Quelle | In: Journal of Intellectual Disabilities, 26 (2022) 3, S.704-717 (14 Seiten)
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| Zusatzinformation | ORCID (Tschamper, Merete Kristin) |
| Sprache | englisch |
| Dokumenttyp | gedruckt; online; Zeitschriftenaufsatz |
| ISSN | 1744-6295 |
| DOI | 10.1177/17446295211002348 |
| Schlagwörter | Intellectual Disability; Epilepsy; Caregivers; Access to Information; Information Needs; Caregiver Attitudes; Genetic Disorders; Knowledge Level; Coping; Interdisciplinary Approach |
| 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. (As Provided). |
| Anmerkungen | 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 |
| Erfasst von | ERIC (Education Resources Information Center), Washington, DC |
| Update | 2024/1/01 |
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