Patients' perceptions of living with epilepsy: a phenomenographic study.

AIM: The study aimed to describe how patients with epilepsy perceive living with epilepsy. BACKGROUND: Epilepsy signifies a medical diagnosis as well as a social label. Persons living with epilepsy have more psychosocial problems compared with the general population, and stigma is often experienced. Few studies address patients' life situations as a whole, and there are no studies on how patients perceive living with epilepsy. DESIGN: This was a qualitative interview study where 19 outpatients were purposively chosen and interviewed. METHOD: A phenomenographic approach was used for interviewing and for analysing the interviews. RESULTS: Living with epilepsy was perceived in two different ways depending on the person's feelings towards the condition. A positive feeling signified 'Living with epilepsy means living a normal life - gaining and maintaining control' with the descriptive categories: 'Accepting the person with epilepsy', 'Taking responsibility' and 'Appreciating the good things'. A negative feeling signified 'Living with epilepsy means living with focus on the condition - conflict and avoidance or resigning to fate' with the descriptive categories: 'Struggling with feelings of stigma, prejudices and loss of control' and 'Giving up hope of recovery, accepting loss of control'. CONCLUSION: The findings indicate that patients' perceptions of living with epilepsy are closely related to their feelings towards the condition. There is a need for further exploration of the relationship between perceptions of epilepsy as a phenomenon, perceptions of living with epilepsy and feelings related to the condition. Relevance to clinical practice. The findings demonstrated how important feelings and perceptions are to how patients with epilepsy regard themselves. This knowledge is essential for nurses when helping patients to better understand underlying reasons for their reactions to various situations. Forming interventions to help patients with epilepsy to find coping strategies that enhance self-esteem and self-value is another area of relevance.

Daily life in epilepsy: patients' experiences described by emotions.

OBJECTIVE: According to the literature, emotions are closely related to health and well-being. The aim of this study was to illuminate the impact of epilepsy on daily life in young adulthood, described by the patients' emotions. METHOD: Young adults, 18-27 years of age (n=95/102), answered a questionnaire eliciting descriptions of their daily lives with epilepsy in their own words. A content analysis was performed, and the material was categorized, according to the Belief Desire Theory of Emotions. RESULTS: The patients experienced positive (confidence, hope, harmony, and forbearance); negative (anxiety, despair, fear, resignation, indignation, sadness, insecurity, and anger); and self-evaluating emotions (being valuable, being insignificant, shame, guilt, and self-doubt). Two different groups of patients could be identified: one group whose members regarded themselves as "healthy" and another group whose members regarded themselves as being ill or "handicapped". The "healthy" group was active and flexible, focusing on possibilities and planning how to handle negative emotions. The "handicapped" group was passive and resigned to the epilepsy in a negative way, afraid of being exposed. They focused on obstacles, and their negative emotions were also directed toward the self. CONCLUSION: This study pointed out the importance of paying attention to the role of emotions in the experiences and well-being of patients with epilepsy.

Quality of life in young adults with uncomplicated epilepsy.

This aim of this study was to illuminate quality of life (QOL) of young adults with epilepsy. Subjects (n=102) answered the Quality of Life Index (QLI) questionnaire together with an overall open question (n=95/102) regarding the impact of epilepsy on daily life. The highest QOL was reported in relation to the family domain, and the lowest, in relation to the psychological/spiritual domain. Overall the participants were satisfied with their lives. Most important were the well-being of their families, their relationships with their spouses, and their ability to control their lives. Half of the participants experienced a negative effect of epilepsy on their daily lives. Of those, 70% considered the effect insignificant or small. This study supports the conclusions that uncomplicated epilepsy does not significantly affect QOL in young adulthood and that the risk of social isolation due to uncomplicated epilepsy is not significantly increased.

Health-related quality of life in youth: a comparison between adolescents and young adults with uncomplicated epilepsy and healthy controls.

PURPOSE: To describe health-related quality of life (HRQOL) in adolescents and young adults with uncomplicated epilepsy and to compare it with a random sample of the general population. METHODS: Young people, aged 13-22 years, meeting the criteria and registered in four Swedish hospitals answered questionnaires (n = 158/193) on HRQOL together with 282 (n = 282/390) random controls living in the same areas in Sweden. The instruments used were "I think I am," "Youth Self Report," "Sense of coherence," and "Family APGAR." Data were analyzed by using factorial analysis of variance. RESULTS: Girls had a poorer HRQOL than boys. The epilepsy group reported lower competence (i.e., they were less active, had lower social competence and poorer school achievement). Both groups had an overall positive self-esteem. Differences between girls in the epilepsy and control groups were small, whereas differences among boys were more evident. Older age was related to poorer HRQOL in both groups. CONCLUSIONS: This study points out the importance of being observant of signs of stigmatization in adolescents with epilepsy.