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Callosotomy in children - Parental experiences reported at long-term follow-up

Journal article
Authors Anneli Ozanne
Cecilia Verdinelli
Ingrid Olsson
Anna Edelvik
Ulla H. Graneheim
Kristina Malmgren
Published in Epilepsy & Behavior
Volume 86
Pages 91-97
ISSN 1525-5050
Publication year 2018
Published at Institute of Neuroscience and Physiology, Department of Clinical Neuroscience
Institute of Clinical Sciences, Department of Pediatrics
Institute of Health and Care Sciences
Pages 91-97
Language en
Links dx.doi.org/10.1016/j.yebeh.2018.06....
Keywords Childhood epilepsy, Epilepsy surgery, Callosotomy, Parental experiences, Qualitative content analysis, qualitative content-analysis, resective epilepsy surgery, vagus, nerve-stimulation, corpus callosotomy, lennox-gastaut, seizure, outcomes, stress, sweden, Behavioral Sciences, Neurosciences & Neurology, Psychiatry
Subject categories Pediatrics

Abstract

Callosotomy is a palliative surgery method for selected individuals with severe, drug-resistant epilepsy. The aim of this retrospective study was to explore parental experiences of the family's life situation before and long after their child had undergone callosotomy. Semistructured interviews of the parents of 12 children were analyzed using a combination of inductive and deductive qualitative content analysis. Before surgery, parents felt that they lived in a chaotic bubble with an unbearable situation; their child had severe and frequent seizures and had to be looked after constantly. Most parents were both satisfied and dissatisfied with the given support and information. However, if the child did not improve after surgery, parents often felt that the information before surgery had not been adequate. After surgery, they found a glimpse of hope. They felt that the family got a new life; the reduced seizure severity led to a better life situation for the family. The support was described as both good and poor. The family life situation was complex, and even if they were partly satisfied with the support, it was still not enough. However, the life situation was also very stressful because of remaining seizures, behavioral problems, and sometimes, adverse effects of surgery. The families lived in disappointment and difficulty and had to fight for their rights. This indicates that these families need more information and social service coordination both before and long after surgery. They need not only tools to manage the child's disabilities but also substantial help to care for the child and to receive the social support they need. (C) 2018 Published by Elsevier Inc.

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