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- Ozanne, Anneli, 1978, et al.
(författare)
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Parental experiences before and long-term after their children's hemispherotomy - A population-based qualitative study
- 2016
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Ingår i: Epilepsy & Behavior. - : Elsevier BV. - 1525-5050 .- 1525-5069. ; 60, s. 11-16
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Tidskriftsartikel (refereegranskat)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.
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| 2. |
- Ozanne, Anneli, 1978, et al.
(författare)
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Understanding the incomprehensible : patients' and spouses' experiences of comprehensibility before, at and after diagnosis of amyotrophic lateral sclerosis
- 2018
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 32:2, s. 663-671
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Tidskriftsartikel (refereegranskat)abstract
- Background: Previous studies have examined manageability and meaningfulness in amyotrophic lateral sclerosis (ALS), but there is a lack of studies examining the comprehensibility of ALS among patients and their spouses.Aim: This qualitative retrospective study aimed to illuminate patients' and spouses' experiences of comprehensibility in ALS from a long-term perspective, when symptoms appeared before diagnosis, and when the diagnosis was given and in life after diagnosis.Methods: Individual semi-structured interviews with 14 patients and 13 spouses were performed. The transcribed interviews were subjected to qualitative content analysis.Findings:Through the whole disease process, patients and spouses feared the unknown regardless of whether they comprehended the disease or not. They described that they before diagnosis felt uncertainty. It was problematic to comprehend what was wrong and what the deterioration implied. At the diagnosis, they described feelings of losing their foothold. Long-term after diagnosis, they still lived in fear and looked for reasons why they were afflicted.Conclusions: Findings of similar experiences in comprehensibility between patients and spouses strengthen the importance of support and information to both parties. Since they hovered between comprehensibility and incomprehensibility during the whole disease process, it is important that their questions, fears and worries are met, from the first visit at hospital and through the whole process. Multiprofessional teams, such as ALS teams and palliative teams can from a holistic perspective increase the possibility of meeting their needs in their unique situation.
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