title: Parental experiences before and long-term after their children's hemispherotomy - A population-based qualitative study.
abstract: Severe childhood epilepsy has an impact on the whole family. For selected children, hemispherotomy is the treatment of choice. The aim of this study was to explore parents' experiences before and after hemispherotomy as reported at a long-term follow-up and their view on received information and support. This was a population-based qualitative descriptive study, using qualitative content analysis of interviews. Seven to eighteen years after hemispherotomy, parents of twenty-one operated children were interviewed about the family life situation, expectations before surgery, and support and information before and after surgery. Before surgery, the theme 'Living in a chaotic bubble' illuminates how parents felt: the family lived in isolation, they felt both dissatisfaction and satisfaction about support and information, and they experienced that surgery was a question about life or death. After surgery, the theme 'Hovering between success and disaster' illuminates how parents hovered between happiness if the surgery was successful and sadness about e.g., complications and behavior problems. They experienced both excellent and poor support, in hospital and at rehabilitation. Regardless of all concerns, parents were satisfied that the child had received an operation. The hemispherotomies were successful and generated a better life situation. However, in order to cope, families need support and information throughout the whole process, from the onset of epilepsy and for a long time after surgery. If the child has behavior problems, an assessment should be made before surgery in order for the families to get adequate support. The specialist team needs to be involved as early as possible and follow the families for several years after surgery. Focus should be on the whole family, if needed including grandparents; family-centered care might be relevant for this patient group.
authors.affiliation: Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Box 457, 405 30 Gothenburg, Sweden; Department of Clinical Neuroscience and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Box 410, 405 30 Gothenburg, Sweden. Electronic address: anneli.ozanne@gu.se.
authors.forename: Anneli
authors.initials: A
authors.lastname: Ozanne
authors.affiliation: Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden. Electronic address: verdinelli@gmail.com.
authors.forename: Cecilia
authors.initials: C
authors.lastname: Verdinelli
authors.affiliation: Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden. Electronic address: ingrid.b.olsson@vgregion.se.
authors.forename: Ingrid
authors.initials: I
authors.lastname: Olsson
authors.affiliation: Department of Nursing, Umeå University, 901 87 Umeå, Sweden; Department of Health Sciences, University West, Trollhättan, Sweden. Electronic address: ulla.hallgren.graneheim@umu.se.
authors.forename: Ulla
authors.initials: U
authors.lastname: H Graneheim
authors.affiliation: Department of Clinical Neuroscience and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Box 410, 405 30 Gothenburg, Sweden. Electronic address: kristina.malmgren@neuro.gu.se.
authors.forename: Kristina
authors.initials: K
authors.lastname: Malmgren
mesh_terms: D000293:Adolescent; D017668:Age of Onset; D002648:Child; D002653:Child Behavior Disorders / Q000209:etiology / Q000523:psychology; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D000069279:Drug Resistant Epilepsy / Q000150:complications / Q000523:psychology* / Q000601:surgery*; D005190:Family; D005195:Family Relations; D005260:Female; D005500:Follow-Up Studies; D038421:Hemispherectomy / Q000009:adverse effects / Q000523:psychology*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D010290:Parents / Q000523:psychology*; D017060:Patient Satisfaction; D011153:Population; D016896:Treatment Outcome; D055815:Young Adult
keywords: Childhood epilepsy; Hemispherotomy; Parental experiences; Qualitative content analysis