Adolescents' qualitative expressions of functional seizure illness representation.

INTRODUCTION: Adolescents with functional (nonepileptic) seizures experience challenges self-managing this mental health condition, especially at school where adolescents experience stress, bullying, accusations of faking seizures, and stigma. According to the Common Sense Model of Self-Regulation, adolescents' self-management decisions and outcomes may be shaped by their functional seizure illness representation (perceptions or mental depictions formed in response to a health threat). However, current research has only explored adults' functional seizure illness representation; little is known about adolescents. The aim of this study was to explore adolescents' expressions of illness representation characteristics (identity, cause, consequence, controllability/curability, and timeline) when describing their experience attending school with functional seizures. METHODS: We analyzed qualitative data from 10 adolescents (age 12-19 years, 100% female) from the United States with functional seizures. Data collection occurred in 2019 via semistructured interviews about adolescents' school experiences. The theme of illness representation emerged without prompting adolescents to discuss illness representation or its characteristics. This study involved inductive analyses and magnitude coding of adolescents' unsolicited expressions of illness representation. RESULTS: All five characteristics of illness representation were mentioned by adolescents; however, not all characteristics were mentioned by all adolescents. Adolescents' expressions of illness representation characteristics resulted in the following descriptive themes: clashing labels and mind-body façade for identity, stress for cause, gains and losses for consequence, control/lack of control for controllability/curability, and no end of seizures in sight for timeline. CONCLUSIONS: Adolescents' expressions of illness representation reveal perceptions considered "threatening" within the Common Sense Model, especially those expressing lack of controllability/curability and condition timelines with no end in sight. The Common Sense Model offers a framework for understanding how these threatening perceptions may impact health and academic outcomes or change with intervention.

Adolescents' Perceptions of School Nurses' Role in Functional Seizures at School.

Adolescents with functional (psychogenic nonepileptic) seizures experience school-related struggles. School nurses are positioned to address such struggles. However, school nurses report having little education or confidence in their role of managing or responding to this mental health condition. Little is known about adolescents' perceptions of school nurses' role in functional seizure care. This qualitative study used semi-structured interviews with 10 adolescents from across the United States with functional seizures to explore adolescents' perceptions of school nurses' roles in functional seizure care at school. Results revealed school nurses, when present, play a spectrum of roles according to adolescents' perceptions, ranging from negative (harmful and uninvolved) to positive (being present, expressing care, and actively doing tasks for the student). These perceived roles shed light upon school nurses' lack of functional seizure awareness and opportunities to incorporate mental health interventions for adolescents with functional seizures in the school setting.

Adolescents' Perceptions of Functional Seizure Self-Management Strategies, Facilitators, and Barriers in the School Environment.

Adolescents with functional (psychogenic nonepileptic) seizures encounter many struggles within the school environment, including stress, bullying, stigmatization, and accusations of faking seizure events. Mental health nurses and school personnel are poised to support school-based self-management; unfortunately, to date, no evidence exists to detail effective school-based self-management strategies for adolescents with functional seizures. Therefore, in the current qualitative study, we examined adolescents' functional seizure self-management, perceived effectiveness, and facilitators and barriers using semi-structured interviews analyzed using content analysis. We interviewed 10 adolescent females aged 12 to 19 years. Themes of proactive (prior to seizure warning symptoms) and reactive (after seizure warning symptoms) self-management, involving protection, perseverance, and progress monitoring, emerged. Adolescents perceived proactive strategies as primarily effective, whereas reactive strategies were less effective. Adolescents identified school nurses and personnel, family, and peers as facilitators and barriers to self-management. Mental health nurses are positioned to provide care, co-create plans, and advocate for adolescents with functional seizures in collaboration with school nurses and personnel. [Journal of Psychosocial Nursing and Mental Health Services, 61(10), 19-27.].

"It's hard!": Adolescents' experience attending school with psychogenic nonepileptic seizures.

Adolescents with psychogenic nonepileptic seizures (PNES) face many challenges in the school setting. Researchers have identified school stressors as potential predisposing, precipitating, and perpetuating factors for PNES. However, few researchers have explored the perspectives of adolescents with PNES regarding their experiences of attending school, where they spend much of their time. Therefore, this qualitative study employed content analysis to explore the experience of attending school as an adolescent with PNES. Ten adolescents (100% female, 80% White) were interviewed. With an overwhelming response of "It's hard!" from respondents, five themes regarding the school experience emerged: stress, bullying, accusations of "faking" seizure events, feeling left out because of the condition, and school-management of PNES. Underlying these themes were expressions of the need for increased understanding from and collaboration among peers, as well as the need for increased understanding from families, healthcare providers, and school personnel including school nurses. Study findings should inform future adolescent PNES research, practice decisions made by healthcare providers in the health and education sectors, education of healthcare and school professionals, and policy development and implementation.

Hybrid Concept Analysis of Self-Management Support: School Nurses Supporting Students with Psychogenic Nonepileptic Seizures.

Self-management support has been identified as an effective nursing intervention for improving outcomes for people with chronic conditions, yet this concept lacks a clear definition. Furthermore, the concept has not been used in school nursing literature despite the clear connection between school nursing practice and tenets of self-management support. Additionally, the concept has not been explored in the context of difficult-to-manage mental health concerns, such as psychogenic nonepileptic seizures. A conversion disorder in which seizure events in the absence of abnormal brainwave activity result from stress, psychogenic nonepileptic seizures affect the quality of life and school experience for students experiencing them and could be addressed through self-management support. This hybrid concept analysis included a review of extant literature and semi-structured interviews with school nurses to ascertain a definition of self-management support in the context of school nursing using care of students with psychogenic nonepileptic seizures as an exemplar.

Social determinants of health associated with epilepsy treatment adherence in the United States: A scoping review.

PURPOSE: The aim of this paper is to share the results of a scoping review in which we examined the social determinants of health (SDoH) that are associated with anti-seizure medication (ASM) treatment adherence among people living with epilepsy in the United States. METHODS: Our review was informed by the methods of Arksey and O'Malley for a scoping review. A total of 3,826 articles were identified for reference through a literature search, of which 17 publications were deemed relevant to our scoping review. The final articles were mapped using the Epilepsy SDoH Conceptual Framework to identify gaps. FINDINGS: Our review suggests that there are multidimensional associations of SDoH in ASM adherence. The SDoH were interrelated. Race/ethnicity and socioeconomic status appeared to have major associations with ASM adherence. Several gaps in the literature were identified, including inadequately exploring the effect that each SDoH has on treatment adherence, and the methods used for assessment. CONCLUSIONS: Future longitudinal research to address the identified gaps would foster interventions that promote ASM adherence among vulnerable populations living with epilepsy.

Preferred practices for rescue treatment of seizure clusters: A consensus-driven, multi-stakeholder approach.

BACKGROUND: Some of the most difficult issues in the care of people living with epilepsy (PWE) regard the definition, treatment, and communication of unexpected increase(s) in seizure frequency over a relatively short duration of time. In order to address this issue, the Epilepsy Foundation established the Rescue Therapy Project in Epilepsy to understand the gaps, needs, and barriers facing people with epilepsy who use or may benefit from rescue therapies (RTs) for "seizure clusters". The intent was to provide consensus-derived recommendations from a broad stakeholder group including PWE, their caregivers, epilepsy specialist physicians, nurses, pharmacists, and representatives of epilepsy & neurology advocacy and professional organizations. METHODS: During Phase 1, a group of epilepsy experts and stakeholders (N = 54) were divided into 3 workgroups that met by conference calls and in-person. Content of workgroups was developed into preferred practices related to RTs. In Phase 2, these recommendations were evaluated by a larger more diverse group of healthcare professionals, PWE, and caregivers. Agreement with recommended preferred practices at 80% or greater was set as the level to achieve consensus. RESULTS: The preferred practices were centered around four core themes identified by the experts and key stakeholders: the importance of a common language; when RTs should be prescribed; assessing the need for RTs; and education/communication about RTs. Consensus from experts and key stakeholders was reached for 27 recommended preferred practices using the Delphi method. "Rescue therapy" or "rescue medicine" was the preferred term to describe what to name a treatment intervention in this context, and seizure action plans was the preferred term to communicate how to respond to a seizure or SCs and the use of RTs. In Phase 2, 23 of the recommendations reached final consensus, including the need for a common language, and the need to consider RTs and seizure action plans in all PWE in an individualized manner, several circumstances in which RTs should be prescribed, and the importance of education regarding RTs and SAPs.

Epilepsy self-management during a pandemic: Experiences of people with epilepsy.

The purpose of this descriptive study was to, from the perspective of adult people with epilepsy (PWE) and caregivers of PWE, explore the effects of the current pandemic and resulting societal changes on epilepsy self-management. Ninety-four respondents completed a mixed-methods quantitative and qualitative survey focused on their epilepsy self-management experiences during the coronavirus disease-19 (COVID-19) pandemic. Respondents noted significant disruption in epilepsy self-management. Lack of ability to obtain medications or see epilepsy providers, as well as increased stress, social isolation, and changes in routine were all reported as troublesome, and more than one-third of the sample reported an increase in seizure frequency since the onset of the pandemic. Suggestions are given regarding how to support PWE during future COVID-19 outbreaks and to better prepare PWE and their caregivers for any life-altering events, such as a pandemic, with robust self-management skills that will allow them to maintain the highest level of function possible.

An Integrative Review of School-Based Mental Health Interventions and Implications for Psychogenic Nonepileptic Seizures.

Millions of students with mental health concerns attend school each day. It is unknown how many of those students experience psychogenic nonepileptic seizures (PNES); however, quality of life, academic, and mental health outcomes for students experiencing PNES can be bleak. Currently, no authors have addressed potential school nurse interventions for students with PNES. Because PNES is a mental health condition and is often influenced by underlying anxiety and/or depression, an integrative review of school nurse interventions and outcomes for students with general mental health concerns was conducted. An integrative review resulted in the identification of 13 quantitative and 2 qualitative studies that met inclusion criteria. The findings from this review suggest school nurses, following principles from the Framework for 21st Century School Nursing Practice, play an active role in mental health interventions and should be involved in replicating and testing known mental health interventions to investigate their effectiveness for students with PNES.

Epilepsy-related romantic and sexual relationship problems and concerns: Indications from Internet message boards.

The objective of this study was to, utilizing a Big Data set and innovative methods, explore romantic and sexual relationship-related concerns among people with epilepsy and their partners. We applied Word Adjacency Graph modeling to more than 2000 message board posts, and five distinct categories of romantic and sexual relationship-related concerns emerged. We conclude that persons with epilepsy are at particular risk for the experience of decrements in their romantic and sexual relationships, which can negatively impact their self-management and overall health.

Living in the epilepsy treatment gap in rural South India: A focused ethnography of women and problems associated with stigma.

In India, women with epilepsy face unique challenges. A focused ethnography of six women within the epilepsy treatment gap was conducted in rural South India. Women were asked to describe their day-to-day lives. Data were collected through open-ended, semistructured interview questions, participant observation, and field notes. Thematic analysis was done. The disease-related stigma contributed to the women's physical, psychological, and emotional struggles; the women and their family members made every effort to conceal the disease. Educational interventions to create awareness could help women seek effective treatments for their seizures, thereby reducing the stigma and improving the quality of their lives.

Parent Perceptions of Family Social Supports in Families With Children With Epilepsy.

PURPOSE AND BACKGROUND: When a child is diagnosed with epilepsy, not only has the child's life been disrupted but also the family's sense of normalcy. Although there is considerable literature discussing family concerns and social support issues in families with chronically ill children, a major gap lies in the exploration of how the specifics of childhood epilepsy affect parents and family operations. The purpose of this study was to identify psychosocial care needs of parents of children with epilepsy. METHODS: Utilizing the Family Systems Nursing theory as a framework, this correlation study examined the relationships among social and community support, family needs, family empowerment, and family quality of life in 29 primary caregivers of a child with epilepsy. RESULTS: These families felt highly supported; they had low needs and high perceptions of empowerment. There was a negative association between social supports and the total family needs survey scale and the subscales of financial support, help regarding explaining to others, and professional support. There was no association between family empowerment or quality of life with parental perceptions of social support. CONCLUSION: In general, as parental perceptions of family needs increased, perceptions of familial social supports decreased. Further research is recommended to investigate varying socioeconomic status effects in families with children with pediatric epilepsy.

Reliability and Validity for Neuroscience Nurses.

The concepts of reliability and validity are important for neuroscience nurses to understand, particularly because they evaluate existing literature and integrate common scales or tools into their practice. Nurses must ensure instruments measuring specified concepts are both reliable and valid. This article will review types of reliability and validity-sometimes referred to collectively as a psychometric testing-of an instrument. Relevant examples in neuroscience are included to illustrate the importance of reliability and validity to neuroscience nurses.

Perspectives on seizure clusters: Gaps in lexicon, awareness, and treatment.

Seizure clusters in epilepsy can result in serious outcomes such as missed work or school, postictal psychosis, emergency room visits, or hospitalizations, and yet they are often not included in discussions between health-care professionals (HCPs) and their patients. The purpose of this paper was to describe and compare consumer (patient and caregivers) and professional understanding of seizure clusters and to describe how consumers and HCPs communicate regarding seizure clusters. We reviewed social media discussion sites to explore consumers' understanding of seizure clusters. We analyzed professional (medical) literature to explore the HCPs' understanding of seizure clusters. Major themes were revealed in one or both groups, including: communication about diagnosis; frequency, duration, and time frame; seizure type and pattern; severity; and self-management. When comparing discussions of professionals and consumers, both consumers and clinicians discussed the definition of seizure clusters. Discussions of HCPs were understandably clinically focused, and consumer discussions reflected the experience of seizure clusters; however, both groups struggled with a common lexicon. Seizure cluster events remain a problem associated with serious outcomes. Herein, we outline the lack of a common understanding and recommend the development of a common lexicon to improve communication regarding seizure clusters.

Recent changes in attitudes of US adults toward people with epilepsy - Results from the 2005 SummerStyles and 2013 FallStyles surveys.

OBJECTIVES: This study aimed to evaluate the validity and the reliability of two components of the Attitudes and Beliefs about Living with Epilepsy (ABLE) scale and to measure the magnitude of the public's attitudes and behaviors toward persons with epilepsy using U.S. nationally representative samples in 2005 and 2013. METHODS: We used data from the cross-sectional 2005 SummerStyles and 2013 FallStyles surveys to test the underlying structure of 16 items of the work and role expectations and personal fear and social avoidance subscales of ABLE by performing exploratory factor analysis (EFA). We estimated the percentages and 95% confidence intervals of adults who agreed or disagreed with each item. We also calculated the mean score of each subscale and used linear regression to obtain means adjusted for selected sociodemographic characteristics. RESULTS: Exploratory factor analysis confirmed a two-factor structure, but with the exception of omitting one item regarding work activities persons with epilepsy cannot do work activities safely, from one subscale. Both subscales also showed a high level of reliability (Cronbach's α=0.8 and Cronbach's α=0.9, respectively). Among the items in the work and role expectations subscale, a significantly higher percentage of adults in 2013 than in 2005 reported strongly or moderately agreeing that persons with epilepsy can do anything as well as anyone else (56.4%, 95% CI=54.1-58.7 vs. 47.6%, 95% CI=45.8-49.3) and can cope with everyday life (69.8%, 95% CI=67.5-72.0 vs. 55.0%, 95% CI=53.2-56.7). Among the items in the personal fear and social avoidance subscale, a significantly higher percentage of adults reported in 2013 than in 2005 strongly or moderately agreeing that they would be nervous around persons with epilepsy (25.4%, 95% CI=23.4-27.5 vs. 16.8%, 95% CI=15.4-18.2) and would avoid those with frequent seizures (12.4%, 95% CI=11.0-13.9 vs. 7.6%, 95% CI=6.7-8.7). The adjusted mean score for work and role expectations differed by sex, age, race/ethnicity, education, and income in both years. The adjusted mean score for personal fear and social avoidance differed by sex, age, race/ethnicity, education, and marital status. Negative attitudes were slightly but significantly higher in 2013 than in 2005. CONCLUSIONS: Centers for Disease Control and Prevention's ABLE scale is a valid and reliable scale that can be used to study and to track the public's attitudes and behaviors toward persons with epilepsy. Compared with 2005, US adults' reported level of expectations for persons with epilepsy improved only in certain aspects by 2013. Adults' level of personal fear and intention for social avoidance worsened from 2005 to 2013. Because the levels of expectations and of fear and social avoidance differed by sociodemographic characteristics, continued efforts tailored to specific groups are needed. To supplement educational programs focused on improving knowledge, new communication approaches grounded in decision theory that quell risk perceptions and allay negative emotional responses are recommended.

The life changes in epilepsy scale: development and establishment of content and face validity.

PURPOSE/OBJECTIVES: Epilepsy is the most common chronic neurological disease in the United States. Adults with epilepsy suffer downturns in quality of life. The development of self-management interventions aimed at improving the quality of life of adults with epilepsy is hindered by the lack of a sensitive, patient-centered outcome measure. The purpose of this study was to develop the Life Changes in Epilepsy Scale (LCES); a second purpose was to establish evidence of the content and face validity of the LCES. METHODS: The LCES was developed based on existing qualitative data and a theoretical framework derived from the literature; items were developed to measure perceived changes in the areas of social functioning, somatic health, and subjective well-being since epilepsy onset. Content validity indices were calculated based on evaluation of the scale by 3 experts in the field of epilepsy, whereas face validity was evaluated by 5 adults with epilepsy who were recruited from a Midwestern epilepsy clinic; qualitative data regarding the appropriateness of outcomes included in the LCES were also collected. RESULTS: The initial version of the LCES included 41 items. Following review of the LCES by experts in which both scale- and item-content validity indices of 1.0 were achieved, the number of items was reduced to 35. All 35 items were maintained following review of the LCES by adults with epilepsy. Qualitative comments from participants supported the inclusion of outcomes measured by the LCES. CONCLUSIONS/IMPLICATIONS: Results of this study provide evidence of both content and face validity of the LCES. Further psychometric testing of the scale is ongoing. In addition to being used as an outcome measure in intervention studies, the psychometrically tested LCES can serve as a valuable tool for advanced practice nurses caring for adults with epilepsy in inpatient, outpatient, and community settings. The LCES can allow for a brief assessment of ways in which patients' lives have been affected by epilepsy, thus allowing nurses to develop targeted nursing interventions for these patients.