Study, expression and coping with emotions of patients with epilepsy and their caregivers

Author(s)

Gabriela Salim Spagnol

• Document type: Doctoral Thesis
• Institution: Universidade Estadual de Campinas (UNICAMP). Faculdade de Ciências Médicas
• Defense date: 2020-03-10

Examining board members

Fernando Cendes; Luiz Eduardo Gomes Garcia Betting; Carlos Eduardo Soares Silvado; Ana Carolina Coan

• Advisor: Li Li Min

Abstract

Introduction: epilepsy is a chronic disease with a psychosocial impact on the patient and the family. Epilepsy patients may experience difficulties in expressing and recognizing their emotions. The general objective of this project was to study the emotions of patients with epilepsy and their caregivers and strategies for their expression and coping. Specific objetives were: to analyze qualitatively the causes of psychological distress in patients with epilepsy and their caregivers through the group "Dialogue with emoticons"; (b) to translate the results of the previous study into artistic expression, as an innovative way of spreading knowledge about epilepsy; (c) to evaluate the acute effect of Mandalas of Emotionas as a method for recognizing emotions. Method and subjects: three studies were developed: (a) a qualitative assessment of feelings and difficulties in the daily lives of patients and family members, through a group experience with patients and family members at a time that precedes an outpatient medical consultation; (b) reinterpretation of the data from this evaluation and presentation of the results through artistic expression, with the objective of seeking awareness and dialogue with society about difficulties faced by patients; (c) evaluation of the effects of Mandalas of the Emotions through a randomized case control study with patients with epilepsy and caregivers in the Neurology Outpatients Clinic. For studies (a) and (c), we recruited patients and their caregivers at an Adult Epilepsy Outpatient Clinic. In studies (a) and (c), approved by the Ethics Committee of the School of Medical Sciences of UNICAMP, the participants answered a questionnaire composed of demographic data and perception of emotions, after completing the Informed Consent Form. In (a), sharing life stories allowed to learn about epilepsy and new possibilities of coping with the disease, creating a potential for personal development. In (b), a presentation communicated perceptions about epilepsy in order to create an experience for its audience, disseminated research results and promoted empathy and compassion. In (c), the randomized case control study showed a greater report of significant difference only in perception of changes after 5 minutes of procedure when comparing control and intervention; with a greater effect on the intervention group and on caregivers compared to patients. The aforementioned studies contributed with benefits both to the community it serves, when promoting access to a group an integrative practice, as well as to increase the number of clinical studies that support its application (AU)

• FAPESP's process: 15/24233-0 - Relation between the Mental Model and Brain Function measured by Functional Neuroimaging
• Grantee: Gabriela Salim Spagnol
• Support Opportunities: Scholarships in Brazil - Doctorate