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  • 1.
    Gauffin, Helena
    et al.
    Division of Neurology, Medical Faculty/IKE, Linköping University, Sweden.
    Flensner, Gullvi
    Högskolan Väst, Institutionen för omvårdnad, hälsa och kultur, Avd för specialistsjuksköterskeutbildning.
    Landtblom, Anne-Marie
    Division of Neurology, Medical Faculty/IKE, Linköping University, Sweden.
    Living with epilepsy accompanied by cognitive difficulties: Young adults’ experiences2011Inngår i: Epilepsy & Behavior, ISSN 1525-5050, E-ISSN 1525-5069, Vol. 22, nr 4, s. 750-758Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objective

    Epilepsy can sometimes be followed by memory impairment. This can result from the underlying cause of epilepsy or from recurrent seizures, or can be a side effect of antiepileptic drugs or a symptom of another disease such as depression. The aim of the study described here was to explore the experience of living with epilepsy and subjective cognitive decline.

    Method

    To better understand the deeper meaning of the phenomenon, a qualitative design was chosen. Fourteen adults aged 18–35 took part in focus group interviews. The participants were divided into four groups, two groups of women and two groups of men, and the interviews were conducted according to a semistructured protocol. Transcripts were analyzed in accordance with the content analysis guidelines.

    Results

    Four themes emerged: “affecting the whole person,” “influencing daily life,” “affecting relationships,” and “meeting ignorance in society.”

    Conclusions

    Cognitive decline has a heavy impact on young adults with intractable epilepsy. In contrast to seizures, the cognitive decline is persistent. The themes reflected different hardships faced by the participants. The consequences of living with epilepsy and cognitive impairment concerned education, employment, social life, self-esteem, and hope for the future. The participants were already using strategies to cope with their cognitive decline, but may benefit from help in developing new strategies to better adjust to their memory problems. Development of more educational programs for both people with epilepsy and their relatives could improve their difficult situations. With help, people can learn to adjust their goals in life and live a fulfilling life despite the disease.

    Highlights

    ► Cognitive decline has a heavy impact on young adults with intractable epilepsy. ► It has consequences for employment, social life, self-esteem, and future plans. ► Participants employed many strategies to cope with their cognitive decline. ► Young people with epilepsy would benefit from help to better adjust to memory problems.

  • 2.
    Ozanne, Anneli
    et al.
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Box 457, 405 30 Gothenburg,Sweden; Sahlgrenska University Hospital, Gothenburg, Sweden; Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Box 410, 405 30 Gothenburg, Sweden.
    Verdinelli, Cecilia
    Sahlgrenska University Hospital, Gothenburg, Sweden; Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Olsson, Ingrid
    Sahlgrenska University Hospital, Gothenburg, Sweden; Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Edelvik, Anna
    Sahlgrenska University Hospital, Gothenburg, Sweden; Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Box 410, 405 30 Gothenburg, Sweden.
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Department of Nursing, Umeå University, 901 87 Umeå, Sweden.
    Malmgren, Kristina
    Sahlgrenska University Hospital, Gothenburg, Sweden; Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Box 410, 405 30 Gothenburg, Sweden.
    Callosotomy in children: Parental experiences reported at long-term follow-up2018Inngår i: Epilepsy & Behavior, ISSN 1525-5050, E-ISSN 1525-5069, Vol. 86, s. 91-97Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    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.

  • 3.
    Ozanne, Anneli
    et al.
    University of Gothenburg, 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, Box 410, 405 30 Gothenburg.
    Verdinelli, Cecilia
    University of Gothenburg, Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, Gothenburg, Sweden.
    Olsson, Ingrid
    University of Gothenburg, Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, Gothenburg, Sweden.
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Umeå University, Department of Nursing, SE-901 87 Umeå, Sweden.
    Malmgren, Kristina
    University of Gothenburg, Department of Clinical Neuroscience and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Box 410, 405 30 Gothenburg, Sweden.
    Parental experiences before and long-term after their children's hemispherotomy: A population-based qualitative study2016Inngår i: Epilepsy & Behavior, ISSN 1525-5050, E-ISSN 1525-5069, Vol. 60, nr July, s. 11-16Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    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.

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