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.

Self-esteem and sense of coherence in young people with uncomplicated epilepsy: a 5-year follow-up.

OBJECTIVE: It is not clear how the psychosocial well-being of young people with epilepsy is affected by growing up with the condition. We studied self-esteem and sense of coherence in a group of young adults with epilepsy and compared the results with those obtained 5 years earlier. METHODS: The participants (n = 97) answered questionnaires regarding self-esteem, sense of coherence, and medical characteristics. RESULTS: Self-esteem and sense of coherence both decreased during the 5-year study period. Self-esteem was correlated to epilepsy-related variables. Participants who were seizure free scored higher on sense of coherence, but there was no association between seizure frequency and sense of coherence among participants who still experienced seizures. CONCLUSION: We found that there was a decline in both sense of coherence and self-esteem over time for young adults with epilepsy. Growing up with epilepsy can lead to impairment of sense of coherence. Sense of coherence does not significantly correlate with epilepsy-related factors, but mirrors the phenomenon of epilepsy. Self-esteem is associated with such epilepsy-related factors as seizure frequency.

Epilepsy patients' conceptions of epilepsy as a phenomenon.

This study addressed epilepsy patients' conceptions of epilepsy as a phenomenon and emotions related to those conceptions. Nineteen outpatients were interviewed, and data were analyzed according to the phenomenographical methodology. Patients described epilepsy in six qualitatively different ways: Epilepsy is (a) an illness related to physical disturbances, (b) a condition related to physical disturbances, (c) a mental disturbance related to lack of mental capacity, (d) a handicap related to psychological and/or social aspects, (e) an identity related to being an epileptic, and (f) a punishment. The emotions confidence, happiness, hope, and annoyance were related to epilepsy as an illness or a condition, whereas shame, fear, sorrow, and guilt were related to the other four categories. This study indicated that, to patients, the phenomenon of epilepsy is above all a psychosocial nature and in that dimension closely related to negative emotions.

Medical outcome in epilepsy patients of young adulthood--a 5-year follow-up study.

UNLABELLED: The appearance of new anti-epileptic drugs (AED) during the last decade has provided neurologists and their patients with a greater choice, but the proof for their superiority over traditional AEDs is sparse, especially their use in adolescence and young adulthood. We studied a group of young adults (18-27 years) with epilepsy and compared their situation in 2004 with those 5 years earlier. MATERIALS AND METHODS: The participants (n=97) answered questionnaires regarding seizure-frequency, AED, side-effects and quality-of-life. Information was also taken from medical records. RESULTS: The use of new generation AEDs increased during the 5-year study period, particularly among women. However seizure frequency had not changed significantly over time, and compared to men the effectiveness in controlling seizures was lower in women. The participants reported normal quality-of-life (QOL), which may indicate that the increase in number of AEDs to choose from actually improved the situation for these young adults with epilepsy. Frequency of seizures and cognitive side-effects of AEDs were associated with a lower QOL. CONCLUSIONS: More women than men seem to be treated with new AEDs, and that the increase in use of new AEDs does not reduce seizure frequency in young adulthood. The effectiveness in controlling seizures seems to be lower in women in the age group studied. Further studies are required to better understand how epilepsy related factors interact.

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.

Emotions in relation to healthcare encounters affecting self-esteem.

This study identifies emotions in patients with epilepsy as a result of confirming and disconfirming healthcare experiences. A discussion of emotions as a motive for patients' goal-directed actions was a further aim of this study. The critical incident method was used for data collection. Emotions occurring in confirming and disconfirming healthcare encounters were analyzed using the Belief-Desire Theory of Emotions and were categorized as basic, complex, or self-evaluating. Confirming encounters aroused emotions like hope, a feeling of security, joy, relief, and pride, while disconfirming encounters aroused emotions like despair, fear, unrest, resignation, shame, and guilt. The emotions identified in the healthcare encounters were recognized as motives for action. An emotion such as a feeling of security aroused a desire in the patients to strengthen their positive self and motivated them to have a constructive and sympathetic attitude toward the healthcare experience. An emotion such as anger caused patients to strive to maintain their self-respect either by avoiding difficult situations and ignoring the problem (patients with a low self-esteem) or by trying to re-create a positive self-image (patients with a high self-esteem). Healthcare encounters between patient and caregiver considerably affect the patient's emotional status and thereby his or her well-being. The importance of establishing healthcare encounters that evoke positive emotions that strengthen patients' resources must be addressed in future nursing care.

Psychosocial aspects of health in adolescence: the influence of gender, and general self-concept.

PURPOSE: The aim of this study was to describe age and gender differences in psychosocial aspects of health in adolescents. A further aim was to explore if self-rated behavior problems varied with the adolescents' general self-concept and sense of coherence. METHODS: Questionnaires on self-rated psychosocial aspects of health were answered by 282 (n = 282/390) randomly selected adolescents, aged 13-22 years (M 17.9/18.0). The instruments used were "I think I am (ITIA)," "Youth Self Report (YSR)," "Sense of coherence (SOC)," and "Family APGAR." Differences between males and females (cross-individual grouping) were analyzed using nonparametric tests. A cluster analysis was performed using a three-cluster solution to identify and describe profiles (person-centered grouping). RESULTS: Compared with males, adolescent females scored less favorably on self-esteem (ITIA) (p = .028), reported more behavior problems (YSR) (p = .000), and showed a lower sense of coherence (SOC) (p = .003). The differences were most evident in the age group 15-17 years. The three clusters significantly differed from each other regarding how high proportions of problems the adolescents of each profile reported. CONCLUSIONS: Compared with male adolescents, adolescent females experienced a poorer psychosocial health in somatic, depressive, and internalizing areas. The result indicated that psychological factors had a major impact on the proportions of problems that the adolescents reported.

The relationship between illness severity, sociodemographic factors, general self-concept, and illness-specific attitude in Swedish adolescents with epilepsy.

PURPOSE: The aim of this study was to describe the relationship between the epilepsy condition (illness severity), sociodemographic factors, general self-concept, and illness-specific attitude in adolescents with uncomplicated epilepsy. METHODS: Adolescents, aged 13-22, fulfilling criteria registered in four Swedish hospitals, answered questionnaires (n = 149). The instruments "I think I am" and "Sense of coherence" measured the patients' general self-concept. The "Child Attitude Toward Illness Scale" measured illness-specific attitude. A summary score (index) calculated from seizure frequency, seizure type, and antiepileptic drug (AED) with side effects measured "Illness Severity". RESULTS: Illness severity was significantly related to the participants' general self-concept, as well as to their attitude toward their condition; i.e. higher illness severity scores were correlated with lower sense of coherence (SOC), poorer self-esteem, and a more negative attitude towards the epilepsy condition. Females had more severe illness according to the Illness Severity Index, with almost 80% found in the moderate and high severity groups as compared to 63% of males in the moderate/high severity groups. CONCLUSIONS: It was concluded that the severity of the epilepsy condition was related to the adolescents' general self-concept and illness-specific attitude, but further research is needed to understand the causality of the relationship. The brief assessment of illness severity, constructed and used in this study should be addressed and developed further.

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.

Seizures and therapy in adolescents with uncomplicated epilepsy.

PURPOSE: This study aimed to describe seizures and their therapy among Swedish adolescents, aged 13-22, with active but uncomplicated epilepsy. METHOD: The adolescents answered questionnaires (158/193). Data were also obtained from medical records. RESULTS: Epileptic seizure types could be specified in 92.1% of the cases. Predominant types were Primary Generalised Tonic-Clonic Seizures and Partial Complex Seizures with Secondary Generalisation. Clinical diagnoses by physicians were unspecified in 25.8%. Ninety percent were on antiepileptic drugs (AEDs), most commonly valproate and carbamazepine. New AEDs were used in 9.3% of the cases and polytherapy in 13.9%. More than 40% of the respondents had seizures despite AED treatment. Side effects of AEDs were experienced by 61%, most commonly tiredness, concentration difficulties and headache. Patients on polytherapy experienced significantly more side effects. The choice of a new AED over a traditional one was not related to seizure type or seizure control. CONCLUSIONS: Many adolescents had persistent seizures despite treatment at a specialist regional epilepsy centre. This, plus the high reported rate of side effects of AED treatment, suggests that treatment is not optimal for the group studied. As traditional AEDs strongly dominated treatment possibly newly marketed AEDs are underused in this group.

The influence of confirming and disconfirming healthcare encounters on the self-relation and quality of life of persons with epilepsy.

The nature of epilepsy-related healthcare encounters is important for the self-relation and quality of life of patients with epilepsy. Seventeen positive and 16 negative encounters (critical incident method) were hermeneutically interpreted by an action-theoretic and confirmatory framework. For patients with positive self-assessment (SA), confirming (positive) encounters were intimately related to feelings of partnership and of manageability of their life situation and future. For patients with negative SA, confirming encounters showed that their struggle for human worth had succeeded and their dependence on positive evidence and energy from the healthcare professional was evident. Disconfirming encounters for patients with positive SA were closely linked to experiences of nonchalance and not being taken seriously as resourceful persons, and for patients with negative SA, being objectified as persons without getting any help in their troublesome life situations. The quality of life was especially improved for patients with positive SA by creating and revising life projects, and for patients with negative SA by engaging in social activities. Patients with positive SA and negative SA have different expectations and demands on encounters. This information could be of help in developing programs for encounters based on patients' own evaluation of their self-esteem and their expectations of care and nursing.