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Patients’ expectations and experiences of epilepsy surgery: A population-based long-term qualitative study
University of Gothenburg, Institute of Health and Care Sciences, Sahlgrenska Academy, Gothenburg, Sweden.
University West, Department of Health Sciences, Specialist Nursing programme. Umeå University, Department of Nursing, SE-901 87 Umeå, Sweden.
Sahlgrenska University Hospital, Gothenburg, Department of Neurology, Sweden.
University of Gothenburg, Department of Clinical Neuroscience and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Gothenburg, Sweden.
2016 (English)In: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 57, no 4, 605-611 p.Article in journal (Refereed) PublishedText
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.

Place, publisher, year, edition, pages
2016. Vol. 57, no 4, 605-611 p.
Keyword [en]
Epilepsy surgery, Subjective experience, Outcome, Qualitative content analysis, Long-term
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Research subject
URN: urn:nbn:se:hv:diva-9131DOI: 10.1111/epi.13333ISI: 000373800800012PubMedID: 26864971ScopusID: 2-s2.0-84958292447OAI: diva2:919098

Article first published online: 11 FEB 2016

Available from: 2016-04-13 Created: 2016-02-26 Last updated: 2016-12-19Bibliographically approved

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Hällgren Graneheim, Ulla
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