title: Raising a child with an Autism Spectrum Disorder: 'If this were a partner relationship, I would have quit ages ago'.
abstract: BACKGROUND
  The aim of the study was to determine the experiences of parents having a child with Autism Spectrum Disorder (ASD) and what kind of support parents would like to receive in primary care.
  
  
  METHODS
  Interviews were held with 29 main caregivers, in combination with a standardized questionnaire on quality of life.
  
  
  RESULTS
  Virtually all parents experienced tremendous shortcomings as a caregiver of their affected child and therefore felt guilty both towards their child with ASD and towards their other children. Most parents felt the burden was beyond their possibilities. The perceived physical and mental health was rather fair. They also wished that healthcare professionals should properly listen to them and must share their decisions instead of making decisions without them having a say. They mostly appreciated practical tips for every day handling the child.
  
  
  CONCLUSIONS
  The burden on parents of raising a child with ASD is too high. Parents like caregivers to listen carefully to their experiences and to facilitate shared decision-making. Outreaching professionals who provide practical assistance are most highly valued.
authors.affiliation: Department of Primary and Community Care, Division Gender and Women's Health, Radboud University Medical Centre, Nijmegen.
authors.forename: Michelle A M M
authors.initials: MA
authors.lastname: van Tongerloo
authors.affiliation: Dimence GGz Mental Health, Centre of Developmental Disorders, Deventer, and.
authors.forename: Patricia J M
authors.initials: PJ
authors.lastname: van Wijngaarden
authors.affiliation: Radboud University Medical Centre and Karakter University Centre, Nijmegen, The Netherlands.
authors.forename: Rutger Jan
authors.initials: RJ
authors.lastname: van der Gaag
authors.affiliation: Department of Primary and Community Care, Division Gender and Women's Health, Radboud University Medical Centre, Nijmegen, Toine.Lagro@radboudumc.nl.
authors.forename: Antoine L M
authors.initials: AL
authors.lastname: Lagro-Janssen
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D002648:Child; D002659:Child Development Disorders, Pervasive / Q000628:therapy*; D002668:Child Rearing / Q000523:psychology*; D003657:Decision Making; D005260:Female; D006699:Home Care Services; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D009426:Netherlands; D010290:Parents / Q000523:psychology*; D011320:Primary Health Care / Q000379:methods*; D011368:Professional-Family Relations; D036301:Qualitative Research; D011788:Quality of Life; D011795:Surveys and Questionnaires
keywords: Autism Spectrum Disorders; parents’ experiences; primary care; quality of life.