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Göteborgs universitets publikationer

Parental experiences before and long-term after their children's hemispherotomy - A population-based qualitative study

Författare och institution:
Anneli Ozanne (Institutionen för vårdvetenskap och hälsa & Institutionen för neurovetenskap och fysiologi); Cecilia Verdinelli (Institutionen för kliniska vetenskaper, sektionen för kvinnors och barns hälsa, Avdelningen för pediatrik); Ingrid Olsson (Institutionen för kliniska vetenskaper, sektionen för kvinnors och barns hälsa, Avdelningen för pediatrik); U. H. Graneheim (-); Kristina Malmgren (Institutionen för neurovetenskap och fysiologi, sektionen för klinisk neurovetenskap och rehabilitering)
Publicerad i:
Epilepsy & Behavior, 60 s. 11-16
ISSN:
1525-5050
Publikationstyp:
Artikel, refereegranskad vetenskaplig
Publiceringsår:
2016
Språk:
engelska
Fulltextlänk:
Sammanfattning (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. (C) 2016 Elsevier Inc. All rights reserved.
Ämne (baseras på Högskoleverkets indelning av forskningsämnen):
MEDICIN OCH HÄLSOVETENSKAP ->
Medicinska grundvetenskaper ->
Neurovetenskaper ->
Neurovetenskap
MEDICIN OCH HÄLSOVETENSKAP ->
Hälsovetenskaper ->
Omvårdnad
Nyckelord:
Childhood epilepsy, Hemispherotomy, Parental experiences, Qualitative content analysis, of-life, epilepsy surgery, hemispherectomy, seizure, adolescents, disability, outcomes, stress, sweden
Postens nummer:
240018
Posten skapad:
2016-08-09 11:26

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