Authors :
Presenting Author: Klara Andersson, MD, PhD – Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg
John Chaplin, Dr – Institute of clinical sciences, Sahlgrenska Academy, University of Gothenburg; Johan Zelano, Professor – Institute of neuroscience and physiology, Sahlgrenska Academy, University of Gothenburg; Kristina Malmgren, Professor – Institute of neuroscience and physiology, Sahlgrenska Academy, University of Gothenburg; Anneli Ozanne, Associate professor – Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg
Rationale:
Results from previous studies indicate social disparities in epilepsy care. This qualitative study aimed to explore the perspectives of persons with epilepsy (PWE) and health professionals on social influence in epilepsy care. Methods:
Focus group interviews were conducted with PWE and health professionals working in epilepsy care at three different out-patient neurology departments in the southwest of Sweden: a university hospital, a suburban daycare hospital, and a regional hospital. The interviews were audio recorded and transcribed verbatim. The text was analyzed using qualitative content analysis. The content was sorted into categories and subcategories. Results:
Three focus group interviews were conducted with PWE (n=9) and three focus group interviews were conducted with health professionals (n=12). The results are highlighted in two categories. The first category, “challenging factors,” is described further in the subcategories: complex medical situations, social barriers, stigma, a lack of public knowledge and a lack of resources in epilepsy care. The second category, “supportive functions of the multidisciplinary team,” describes possible solutions to many of the challenges in epilepsy care in the sub-categories: individual mapping, communication tools, psychological support, education, and cooperation with external sectors (such as psychiatric and pediatric care, schools, the social Insurance system, the public employment agency, private employers, etc.)Conclusions:
An individually tailored approach in epilepsy care where the multidisciplinary team gather to define difficulties and need for support for individual patients seem particularly important in the care of socially vulnerable PWE. To improve social support for PWE, there is a need for established routines for communication with external sectors and for education about epilepsy among PWE, their relatives, and the public. There is also a need for established routines for the screening and treatment of psychiatric comorbidities, and for the provision of psychological support for patients and their relatives.
Funding: Margaretahemmet Foundation, Angered Hospital Research Department, NEURO Sweden, Gothenburg Foundation for Neurological Research (ISNF)