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

Thompson, Rose, Linehan, C., Glynn, M. and Kerr, Michael Patrick 2013. A qualitative study of carers' and professionals' views on the management of people with intellectual disability and epilepsy: A neglected population. Epilepsy & Behavior 28 (3) , p. 379. 10.1016/j.yebeh.2013.05.024

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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.

Item Type: Article
Date Type: Publication
Status: Published
Schools: MRC Centre for Neuropsychiatric Genetics and Genomics (CNGG)
Medicine
Subjects: R Medicine > R Medicine (General)
R Medicine > RZ Other systems of medicine
Uncontrolled Keywords: Epilepsy; Intellectual disability; Medical supports;Attitude of Health Personnel; Female; Focus Groups; Great Britain; Health Surveys; Humans; Ireland; Male; Online Systems; Qualitative Research; Translational Medical Research
Publisher: Elsevier
ISSN: 1525-5050
Last Modified: 22 Nov 2017 22:29
URI: http://orca.cf.ac.uk/id/eprint/75406

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Cited 5 times in Web of Science. View in Web of Science.

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