Rare, epilepsy-related disorder including intellectual disability - A scoping review of caregivers' identified information needs.

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.