title: 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 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.
authors.affiliation: Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University, UK. ThompsonR5@cf.ac.uk
authors.forename: R
authors.initials: R
authors.lastname: Thompson
authors.forename: C
authors.initials: C
authors.lastname: Linehan
authors.forename: M
authors.initials: M
authors.lastname: Glynn
authors.forename: M P
authors.initials: MP
authors.lastname: Kerr
mesh_terms: D001291:Attitude of Health Personnel; D004827:Epilepsy / Q000628:therapy*; D005260:Female; D017144:Focus Groups; D006306:Health Surveys; D006801:Humans; D008607:Intellectual Disability / Q000628:therapy*; D007494:Ireland / Q000453:epidemiology; D008297:Male; D009862:Online Systems; D036301:Qualitative Research; D057170:Translational Research, Biomedical; D006113:United Kingdom / Q000453:epidemiology
keywords: Epilepsy; Intellectual disability; Medical supports