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  • 1.
    Ozanne, Anneli
    et al.
    University of Gothenburg, Institute of Health and Care Sciences, Sahlgrenska Academy, Gothenburg, Sweden.
    Hällgren Graneheim, Ulla
    University West, Department of Health Sciences, Specialist Nursing programme. University West, Department of Health Sciences, Section for nursing - graduate level. Umeå University, Department of Nursing, SE-901 87 Umeå, Sweden.
    Ekstedt, Gerd
    Sahlgrenska University Hospital, Gothenburg, Department of Neurology, Sweden.
    Malmgren, Kristina
    University of Gothenburg, Department of Clinical Neuroscience and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Gothenburg, Sweden.
    Patients’ expectations and experiences of epilepsy surgery: A population-based long-term qualitative study2016In: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 57, no 4, p. 605-611Article in journal (Refereed)
    Abstract [en]

    Objective The aim of this prospective and population-based longitudinal study was to explore patients’ expectations before surgery and their experiences both short and long term after epilepsy surgery. Methods A national sample of adult patients answered open-ended questions preoperatively, 2 years after surgery and at a cross-sectional long-term follow-up (mean 13 years, standard deviation [SD] 1.85). The answers were analyzed by qualitative content analysis. Results Eighty patients participated in the study. Before surgery, patients experienced a belief in a “normal” life; they hoped for reduction of seizures and medication, a richer social life, and more self-confidence. However, they also experienced anxiety of the unknown. They were afraid of the operation, of continued seizures, and of complications. At both postoperative follow-ups patients experienced increased independence. They had symptom reduction, felt relief from worries and fears, and felt that they had a new life. However, some patients experienced that the operation had changed their life to the worse due to both psychological and neurologic adverse effects, regardless of whether they had obtained seizure freedom or improvement. Significance Positive experiences of epilepsy surgery dominated, both in the short and long term. However, attention must be paid to negative expectations before and negative experiences after surgery in order to provide individual support and information. This should increase the possibility for patients to have realistic hopes before surgery and to find coping strategies in the new life situation after surgery.

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