title: "Sometimes, it just stops me from doing anything": A qualitative exploration of epilepsy management in people with intellectual disabilities and their carers.
abstract: Epilepsy affects 1 in 5 people with an intellectual disability (ID), but little is known about their experiences of living with epilepsy. A qualitative study was conducted to investigate the impact and management of epilepsy in people with ID.
  
  
  
  People with epilepsy and ID and their carers were invited to take part in semi-structured interviews. Eleven participants with ID and their carers were interviewed together, one participant with ID and their carer were interviewed separately, two interviews took place with the participant with ID only, and one interview took place with the carer only. The interviews were transcribed verbatim, coded, and analyzed thematically (dual independent coding for 30% of the transcripts).
  
  
  
  Three themes emerged (participant characteristics, living with epilepsy, epilepsy management and information needs) which indicated the following: 1) diversity regarding health profiles, communication abilities, severity of epilepsy, perceived control of epilepsy, and support needs; 2) a reduction in severity and frequency of seizures for a sizeable proportion of participants through antiepileptic drugs; 3) the lifelong impact of epilepsy and related seizures on participants' activities and quality of life; 4) the perceived burden of epilepsy and difficulty managing the condition for a large proportion of participants; 5) high levels of satisfaction with epilepsy-related services and care; and 6) an overall lack of written accessible information about epilepsy.
  
  
  
  This study has highlighted a significant impact of epilepsy and related seizures on the daily lives and quality of life of people with ID. Although a sizeable proportion of participants and their carers considered their epilepsy to be well controlled, the majority reported difficulties managing epilepsy and minimizing its impact on their wellbeing. Excluding care staff and the support provided by epilepsy clinics, the participants had not accessed any adapted self-management or information resources about epilepsy.
authors.affiliation: Centre for Health Services and Clinical Research, Department of Psychology, University of Hertfordshire, Hatfield, UK. Electronic address: s.mengoni@herts.ac.uk.
authors.forename: Silvana E
authors.initials: SE
authors.lastname: Mengoni
authors.affiliation: Institute for Practice, Interdisciplinary Research and Enterprise (INSPIRE), University of West London, UK.
authors.forename: Bob
authors.initials: B
authors.lastname: Gates
authors.affiliation: Learning Disabilities Services, Hertfordshire Partnership University NHS Foundation Trust, St Albans, UK.
authors.forename: Georgina
authors.initials: G
authors.lastname: Parkes
authors.affiliation: Centre for Health Services and Clinical Research, Department of Psychology, University of Hertfordshire, Hatfield, UK.
authors.forename: David
authors.initials: D
authors.lastname: Wellsted
authors.affiliation: Norwich Medical School and Norwich Clinical Trials Unit, University of East Anglia, UK.
authors.forename: Garry
authors.initials: G
authors.lastname: Barton
authors.affiliation: Department of Psychiatry, University of Cambridge, School of Clinical Medicine, Box 189, Cambridge Biomedical Campus, Cambridge CB2 2QQ, UK.
authors.forename: Howard
authors.initials: H
authors.lastname: Ring
authors.affiliation: Research and Development, Hertfordshire Partnership University NHS Foundation Trust, St Albans, UK.
authors.forename: Mary Ellen
authors.initials: ME
authors.lastname: Khoo
authors.affiliation: Research and Development, Hertfordshire Partnership University NHS Foundation Trust, St Albans, UK; NIHR Clinical Research Network: Eastern, Division 4, Mental Health, UK.
authors.forename: Deela
authors.initials: D
authors.lastname: Monji-Patel
authors.affiliation: Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, UK.
authors.forename: Karin
authors.initials: K
authors.lastname: Friedli
authors.affiliation: Learning Disabilities Services, Hertfordshire Partnership University NHS Foundation Trust, St Albans, UK.
authors.forename: Asif
authors.initials: A
authors.lastname: Zia
authors.affiliation: Centre for Health Services and Clinical Research, Department of Psychology, University of Hertfordshire, Hatfield, UK; The Dartmouth Institute for Health Policy & Clinical Practice, Dartmouth College, Lebanon, NH, USA.
authors.forename: Marie-Anne
authors.initials: MA
authors.lastname: Durand
mesh_terms: D000328:Adult; D017028:Caregivers; D015897:Comorbidity; D004827:Epilepsy / Q000453:epidemiology / Q000503:physiopathology / Q000523:psychology / Q000628:therapy; D005260:Female; D006801:Humans; D008607:Intellectual Disability / Q000453:epidemiology; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D011788:Quality of Life; D012648:Self Care
keywords: Epilepsy; Intellectual disabilities; Qualitative study; Self-management