title: Lived experience of having a child with stroke: A qualitative study.
abstract: OBJECTIVE
  To assess the lived experience of parents whose child has suffered a stroke.
  
  
  METHODS
  A qualitative study model was chosen, comprising in-depth interviews with parents separately or altogether. A semi-structured interview guide was used. Interviews were audio-recorded, transcribed verbatim and analysed using constant comparison and content analysis. Participant checking was performed. Thirteen families of children aged 1 month to 17 years, having suffered ischaemic or haemorrhagic arterial stroke within one to five years, were recruited. Interviews were conducted within home setting.
  
  
  RESULTS
  After fourteen interviews, data saturation was met and six main narrative themes were identified, underlining a common path of stroke lived experience: brutality of diagnosis, lack of information regarding disease condition, feeling of abandonment after discharge from hospital, focus on functional recovery, late awareness of cognitive disorders, and need for psychological support and family adaptation.
  
  
  CONCLUSIONS
  This is the first qualitative study reporting lived experience of childhood stroke caregivers. In line with other qualitative studies exploring the feelings of parents coping with severe neurological conditions of childhood, our results advocate the need for evaluation of family centred health interventions.
authors.affiliation: Université Claude Bernard, Institut des Sciences et Techniques de la Réadaptation, F-69677 Lyon, France.
authors.forename: Syrine
authors.initials: S
authors.lastname: Soufi
authors.affiliation: INSERM, SAINBIOSE, U1059, unité dysfonction vasculaire et hémostase, université Jean-Monnet, CIC 1408, F-42055 Saint-Etienne, France; CHU Saint-Étienne, Centre national de référence de l'AVC de l'enfant - Service de médecine physique et réadaptation pédiatrique, F-42055 Saint-Etienne, France.
authors.forename: Stéphane
authors.initials: S
authors.lastname: Chabrier
authors.affiliation: INSERM, SAINBIOSE, U1059, unité dysfonction vasculaire et hémostase, université Jean-Monnet, CIC 1408, F-42055 Saint-Etienne, France.
authors.forename: Laurent
authors.initials: L
authors.lastname: Bertoletti
authors.affiliation: INSERM, SAINBIOSE, U1059, unité dysfonction vasculaire et hémostase, université Jean-Monnet, CIC 1408, F-42055 Saint-Etienne, France.
authors.forename: Silvy
authors.initials: S
authors.lastname: Laporte
authors.affiliation: INSERM, SAINBIOSE, U1059, unité dysfonction vasculaire et hémostase, université Jean-Monnet, CIC 1408, F-42055 Saint-Etienne, France. Electronic address: stefdart@gmail.com.
authors.forename: Stéphane
authors.initials: S
authors.lastname: Darteyre
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D020521:Stroke / Q000523:psychology*
keywords: Caregiver; Childhood; Lived experience; Parenting; Stroke