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...

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Bibliographic Details
Published in:European journal of paediatric neurology 2017-05, Vol.21 (3), p.542-548
Main Authors: Soufi, Syrine, MSc, Chabrier, Stéphane, MD, Msc, Bertoletti, Laurent, MD, PhD, Laporte, Silvy, MD, PhD, Darteyre, Stéphane, MD, MSc
Format: Article
Language:English
Subjects:
Adaptation, Psychological
Adolescent
Adult
Caregiver
Child
Child, Preschool
Childhood
Female
Health Knowledge, Attitudes, Practice
Humans
Lived experience
Male
Neurology
Parenting
Parents - psychology
Pediatrics
Qualitative Research
Stroke
Stroke - psychology
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Summary: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 ischemic 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. Conclusion 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.
ISSN:1090-3798
1532-2130
DOI:10.1016/j.ejpn.2017.01.007