title: Caring for a family member with intellectual disability and epilepsy: practical, social and emotional perspectives.
abstract: OBJECTIVE
  To examine the caregiving impact of those who support a family member with intellectual disability and epilepsy.
  
  
  METHODS
  An online, qualitative international survey was conducted via the auspices of the International Bureau of Epilepsy with various stakeholders who support individuals who have intellectual disability and epilepsy. Qualitative comments were analyzed from respondents who identified themselves as family members (n=48; 36%) who referred specifically to the impact of supporting a family member with these combined disabilities.
  
  
  RESULTS
  Four main domains, which were comprised of ten themes, were derived from the qualitative data using Braun and Clarke's qualitative framework. These domains comprised (1) practical concerns, (2) disrupted family dynamics, (3) emotional burden and (4) positive experiences. In combination these themes illustrate the pervasive impact on family life for those supporting an individual with complex needs. Financial concerns, coordination and responsibility of care, diverted attention from other family members and social isolation all contributed a significant burden of care for family members. Positive aspects were, however, also cited including the closeness of the family unit and a fostering of altruistic behavior.
  
  
  CONCLUSIONS
  The study provides an insight into an under-researched area. The burden of caring for a family member across the lifespan has a largely negative and pervasive impact. Targeted service provision could contribute to an amelioration of the challenges faced by these families.
authors.affiliation: Unit for Social and Community Psychiatry, WHO Collaborative Centre for Mental Health Services Development, Barts and the London School of Medicine, Queen Mary University of London, Newham Centre for Mental Health, United Kingdom.
authors.forename: Rose
authors.initials: R
authors.lastname: Thompson
authors.affiliation: Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University, Cardiff, United Kingdom.
authors.forename: Mike
authors.initials: M
authors.lastname: Kerr
authors.affiliation: Epilepsy Ireland, Dublin, Ireland.
authors.forename: Mike
authors.initials: M
authors.lastname: Glynn
authors.affiliation: School of Psychology, University College Dublin, Ireland; Tizard Centre, University of Kent, Canterbury, Kent, United Kingdom; School of Social Work and Social Policy, Trinity College Dublin, Ireland. Electronic address: christine.linehan@ucd.ie.
authors.forename: Christine
authors.initials: C
authors.lastname: Linehan
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D006233:Persons with Disabilities / Q000523:psychology*; D004644:Emotions / Q000502:physiology*; D004827:Epilepsy / Q000523:psychology*; D005190:Family / Q000523:psychology*; D005192:Family Health; D005260:Female; D006801:Humans; D008607:Intellectual Disability / Q000523:psychology*; D008297:Male; D012944:Social Support; D055815:Young Adult
keywords: Co-morbidity; Family support; Intellectual disability; Life-long care burden