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.

Comorbidities of Rare Epilepsies: Results from the Rare Epilepsy Network.

OBJECTIVE: To describe the prevalence and characteristics of comorbidities in persons with rare epilepsies. STUDY DESIGN: Persons with rare epilepsies and caregivers of those affected were recruited through the Epilepsy Foundation and more than 30 rare epilepsy advocacy organizations affiliated with the Rare Epilepsy Network (REN). A web-based survey was conducted using a questionnaire consisting of core sections to collect data from affected persons on various aspects, including comorbidities. Comorbidity information was grouped into 15 classes, 12 of which had a stem question followed by detailed branch questions and 3 that were created from a combination of related questions. RESULTS: Of 795 persons with more than 30 different rare epilepsy diagnosis groups, one-half had ≥5 comorbidity classes and 97% were classified as complex chronic disease (C-CD). The highest number of comorbidity classes reported per person were persons with Aicardi syndrome, Phelan-McDermid syndrome (median, 7.0; IQR, 5.0-9.0), and tuberous sclerosis complex (median, 6.0; IQR, 4.0-8.0). The most common comorbidity classes were learning/developmental disability (71%), mental health issues (71%), sleep disorders (60%), brain abnormalities (52%), oral issues (49%), bone-joint issues (42%), hyper/hypotonia (42%), and eye-vision disorders (38%). The prevalence of brain abnormalities, hyper/hypotonia, eye, and cardiac disorders was significantly higher in persons first diagnosed with epilepsy at a younger age (<9 months) than in those first diagnosed at an older age (P < .05 for trend). CONCLUSIONS: Nearly all persons with rare epilepsies are medically complex, with a high prevalence of multiple comorbidities, especially those who were diagnosed with epilepsy in the first year of life. Comorbidities should be carefully considered in the diagnosis and management of persons with rare epilepsies.

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.

Integration of Parent and Nurse Perspectives of Communication to Plan Care for Technology Dependent Children: The Theory of Shared Communication.

PURPOSE: The purpose of this qualitative research study was to expand our understanding of the process of communication between parents of hospitalized technology dependent children and their nurses originally detailed in the Theory of Shared Communication (TSC). DESIGN AND METHODS: This grounded theory study was conducted with five parents of technology dependent children hospitalized in a large Midwestern children's hospital and nine nurses who care for technology dependent children admitted to the same hospital during July and August 2013. Semi-structured interviews and journals (parents only), field notes and a demographic survey were used to collect data which was analyzed using constant comparative analysis. RESULTS: Parents verified the concepts of the TSC and relationships among them. Nurses' perceptions of communication with parents reflected the same parent identified and verified concepts upon which the TSC was originally grounded including respect for own and other's expertise, asking, listening, explaining, advocating, verifying understanding and negotiating roles to achieve mutual understanding of the child's plan of care. The nurses' perceptions differed stylistically but not categorically from those of the parents. CONCLUSIONS: The addition of the nurse's perspectives to the verified TSC expands our understanding of this process of communication. PRACTICE IMPLICATIONS: With the integration of nurse and parent perspectives, the TSC can be used to enhance communication and care for hospitalized technology dependent children and their families.

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.

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.

Factor analyses of an Adult Epilepsy Self-Management Measurement Instrument (AESMMI).

The purpose of this study was to test the psychometric properties of an enhanced Adult Epilepsy Self-Management Measurement Instrument (AESMMI). An instrument of 113 items, covering 10 a priori self-management domains, was generated through a multiphase process, based on a review of the literature, validated epilepsy and other chronic condition self-management scales and expert input. Reliability and exploratory factor analyses were conducted on data collected from 422 adults with epilepsy. The instrument was reduced to 65 items, converging on 11 factors: Health-care Communication, Coping, Treatment Management, Seizure Tracking, Social Support, Seizure Response, Wellness, Medication Adherence, Safety, Stress Management, and Proactivity. Exploratory factors supported the construct validity for 6 a priori domains, albeit with significant changes in the retained items or in their scope and 3 new factors. One a priori domain was split in 2 subscales pertaining to treatment. The configuration of the 11 factors provides additional insight into epilepsy self-management behaviors. Internal consistency reliability of the 65-item instrument was high (α=.935). Correlations with independent measures of health status, quality of life, depression, seizure severity, and life impact of epilepsy further validated the instrument. This instrument shows potential for use in research and clinical settings and for assessing intervention outcomes and self-management behaviors in adults with epilepsy.

Development of the Adult Epilepsy Self-Management Measurement Instrument (AESMMI).

Epilepsy self-management is the total sum of steps that people perform to maximize seizure control, to minimize the impact of having a seizure disorder, and to maximize quality of life. As part of a phased approach to instrument development, we conducted descriptive analyses of data from epilepsy self-management items covering 10 domains of self-management gathered from 422 adults with epilepsy from multiple study sites. Participants most frequently reported performing sets of behaviors related to managing treatment and stigma, information seeking, managing symptoms, and communicating with providers. Behaviors reported with lower frequency were related to seeking social support and engaging in wellness behaviors. Significant differences for the domains were found for income, gender, and education levels but not for other different demographic variables. A subsequent analytic phase, reported in a companion article, will use factor analysis to identify and validate the subscale structure of the domains.

Chronic disease self-management: a hybrid concept analysis.

BACKGROUND: Chronic diseases require chronic disease self-management (CDSM). Existing CDSM interventions, while improving outcomes, often do not lead to long-lasting effects. To render existing and new CDSM interventions more effective, an exploration of the concept of CDSM from both the literature and patient perspectives is needed. The purpose of this study was to describe the current conceptualization of CDSM in the literature, identify potential inadequacies in this conceptualization based on a comparison of literature- and patient-based CDSM descriptions, and to offer a more comprehensive definition of CDSM. METHODS: A hybrid concept analysis was completed. DISCUSSION: In the literature, CDSM is defined as behaviors influenced by individual characteristics. Patients in the fieldwork phase discussed aspects of CDSM not well represented in the literature. CONCLUSIONS: CDSM is a complex process involving behaviors at multiple levels of a person's environment. Pilot work to develop and test CDSM interventions based on both individual and external characteristics is needed.

Problems, needs, and useful strategies in older adults self-managing epilepsy: implications for patient education and future intervention programs.

OBJECTIVE: The purpose of this study was to determine, in a sample of older adults diagnosed with epilepsy, perceived self-management problems and needs encountered since diagnosis, as well as strategies used to address problems and needs. METHODS: Qualitative description was used. Twenty older adults engaged in face-to-face interviews. Interviews were analyzed via content analysis. RESULTS: Participants reported problems, needs, and strategies in six categories: Information, Physical and Emotional Symptoms, Memory and Concentration, Medications, Commitments, and Relationships. CONCLUSION: Participants noted some problems and needs previously documented in the literature, though current results have built upon extant literature to reveal etiologies of and contexts surrounding problems and needs; new findings were also revealed. This knowledge can be used by health-care providers in counseling and educating older adults with epilepsy and can inform formal self-management interventions. PRACTICE IMPLICATIONS: Determining needs from the patient's perspective is consistent with today's focus on patient-centered care. Current findings have led to an organizing framework for problems and needs of older adults with epilepsy. More research is needed to develop the framework so that it can serve as a template for an intervention. In the interim, findings can inform educational practices of those caring for this population.

Discussing sudden unexpected death in epilepsy (SUDEP) with patients: practices of health-care providers.

There is a lack of consensus regarding how health-care providers should address SUDEP with patients. The purpose of this study was to describe various health-care providers' practices regarding discussion of SUDEP with patients. Separate focus groups were conducted with epileptologists, neurologists, and advanced practice nurses. Across all disciplines, reasons for discussing SUDEP included Practical Accountability, Moral Accountability, Proactivity, and Reactivity. For nurses only, an additional reason was Patient Advocacy. In terms of when not to discuss SUDEP, for all disciplines, and especially the physicians, the theme Not at First emerged. Additional themes that emerged for this question included, in the case of neurologists and epileptologists, Moral Accountability and Out of Options. Ways in which SUDEP is discussed included, in all groups, Discussion and Written Materials. In addition, prevalent in all groups was the finding that procedures for discussing SUDEP with patients and families need to be somewhat standardized. Implications for practice are discussed.