A qualitative study of carers' and professionals' views on the management of people with intellectual disability and epilepsy: A neglected population

Abstract Little attention has been paid to the specific needs of people with intellectual disability and epilepsy despite evidence of increased prevalence of epilepsy, increased risk of complex epilepsy, and heightened use of health services among this group. In an attempt to address this gap, an on...

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Bibliographic Details
Published in:Epilepsy & behavior 2013-09, Vol.28 (3), p.379-385
Main Authors: Thompson, R, Linehan, C, Glynn, M, Kerr, M.P
Format: Article
Language:English
Subjects:
Attitude of Health Personnel
Communication
Epilepsy
Epilepsy - therapy
Female
Focus Groups
Health Surveys
Humans
Intellectual disability
Intellectual Disability - therapy
Ireland - epidemiology
Male
Medical supports
Neurology
Online Systems
Qualitative Research
Translational Medical Research
United Kingdom - epidemiology
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Summary:Abstract Little attention has been paid to the specific needs of people with intellectual disability and epilepsy despite evidence of increased prevalence of epilepsy, increased risk of complex epilepsy, and heightened use of health services among this group. In an attempt to address this gap, an online international survey was undertaken inviting health professionals and caregivers, both paid and family members, to share their views on the adequacy and quality of available treatment. This paper reports on the responses obtained from 113 individuals from the UK and Ireland. Findings revealed that professionals and carers differ in their expectations of treatment and with regard to maximizing communication during consultations. In addition, findings suggested that the potential of consultations to provide information for carers, as well as to allay concerns, may not be realized. Rescue medications were viewed favorably; however, respondents expressed less satisfaction with routine medications. These findings may reflect a failure by professionals to appropriately transfer knowledge of these treatments.
ISSN:1525-5050
1525-5069
DOI:10.1016/j.yebeh.2013.05.024