title: The caregivers' perspectives of burden before and after an internet-based intervention of young persons with ADHD or autism spectrum disorder.
abstract: BACKGROUND
  Everyday life in a family with a young person with attention-deficit/hyperactivity disorder (ADHD) and/or autism spectrum disorder (ASD), is multifaceted and may be a burden to the caregivers. The aim was to explore experiences of the caregiver situation, and how they were affected when the young persons received Internet-Based Support and Coaching (IBSC).
  
  
  METHODS
  A multiple descriptive case design was used. Ten caregivers of 10 young persons with ADHD and/or ASD participated, and completed a questionnaire, measuring caregiver burden. Three analysis methods were used; statistical analysis of the caregivers' scores, case reports and qualitative content analysis of an open question.
  
  
  RESULTS
  Most of the caregivers never had to provide hands-on help with primary ADL, and were able to cope with the young person's problems. The caregivers' role required patience. They had major worries about the future, when they would no longer be around to provide support. After the intervention, there was no common trajectory for all caregivers; their situation either remained unchanged, improved or deteriorated.
  
  
  CONCLUSIONS
  The caregiver's burden is more or less complex when the young person undergoes the transition into adulthood. The caregiver burden decreased in some families following the young person's participation in IBSC.
authors.affiliation: a Department of Health and Rehabilitation , The Sahlgrenska Academy at University of Gothenburg, Institute of Neuroscience and Physiology , Sweden.
authors.forename: Helena
authors.initials: H
authors.lastname: Söderqvist
authors.affiliation: a Department of Health and Rehabilitation , The Sahlgrenska Academy at University of Gothenburg, Institute of Neuroscience and Physiology , Sweden.
authors.forename: Eklund
authors.initials: E
authors.lastname: Kajsa
authors.affiliation: b Department of Health Sciences, Section for Health Promotion and Care Sciences , University West , Trollhättan , Sweden.|c The Vårdal Institute, Swedish Institute for Health Sciences , Lund , Sweden.
authors.forename: Britt Hedman
authors.initials: BH
authors.lastname: Ahlström
authors.affiliation: c The Vårdal Institute, Swedish Institute for Health Sciences , Lund , Sweden.|d Department of Psychiatry and Neurochemistry , Institute of Neuroscience and Physiology , Gillberg Neuropsychiatry Centre , Sahlgrenska Academy, University of Gothenburg , Göteborg , Sweden.
authors.forename: Elisabet
authors.initials: E
authors.lastname: Wentz
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000223:Adaptation, Psychological; D001289:Attention Deficit Disorder with Hyperactivity / Q000523:psychology*; D000067877:Autism Spectrum Disorder / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D005260:Female; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D011795:Surveys and Questionnaires
keywords: ADHD; Activities of daily living; autism; caregiver burden; internet-based support