Patient empowerment as capabilities: The perspective of patients with epilepsy at a medical-social center in France

• Published in: Epilepsy & behavior 2021-03, Vol.116, p.107795-107795, Article 107795
• Main Authors: Bogaert, Brenda, Petit, Jérôme
• Format: Article
• Language: English
• Subjects: Capabilities approach; Empowerment; Epilepsy - therapy; European Association of Epilepsy Centers; France; Hospitals; Humanities and Social Sciences; Humans; La Teppe; Patient empowerment; Patient Participation; Person-centered care; Philosophy
• ISSN: 1525-5050; 1525-5069
• DOI: 10.1016/j.yebeh.2021.107795

•A new concept of empowerment based upon the perspective of patients with epilepsy.•Ideas of how to incorporate empowerment into care for patients with epilepsy.•New understandings of what a person-centered perspective implies for clinical care. The aim of the study was to develop a new conceptual framework of empowerment based upon the perspective of patients with refractory epilepsy at the medical-social center of La Teppe (France). A qualitative research methodology was used, which consisted of focused ethnography and in-depth interviews. The 19 patients interviewed came from three hospital services and were in the age range of 20–60. Ten interviews were also conducted with healthcare providers, which included neurologists, psychiatrists, nurses, and social educators. Results were analyzed via an intuitive process of thematic analysis. The researcher also constructed narrative cases of the patient interview to better understand patient responses in context. The results show that patients understood empowerment as the ability to develop and take advantage of opportunities in their overall lives. This included searching to be healthy by reducing their seizures, developing their practical reason in order to be able to make more autonomous life choices, and living with and toward others in positive social relationships. The patient’s perspective on empowerment encompasses but also goes beyond their medical care. We therefore propose a novel conceptual framework for empowerment as the patient’s capabilities to develop and make their life choices, with help as needed from their support network. In order to help patients toward empowerment, clinical care can include discussions and dedicate resources that help patients work toward their overall life projects. Several methodologies, including the use of a personalized project and therapeutic patient education, are elaborated to give ideas for empowerment programming in epilepsy care.