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.

Constructive communication patterns as related to relationship satisfaction, seizure severity, and patient activation among people with epilepsy.

PURPOSE: People with epilepsy (PWE) must manage their condition properly for both quality and longevity of life. Effective self-management is critical and can be monitored via levels of patient activation (i.e., a continuum of taking a passive vs active role in personal healthcare) and the presence/severity of seizures. One known influencer of self-management is the quality of one's intimate relationship, a documented area of major concern for PWE. Here we examined a critical facet of PWEs' intimate relationships-(un)constructive communication with their partner. METHODS: Using data from a web-based survey of 89 PWE, and regression-based mediation analyses, we examined associations with patient activation and seizure severity. We added further explanatory utility by examining relationship satisfaction as a mediator of those links. RESULTS: There were positive links between more constructive communication, more patient activation, and less severe seizures. The explanatory path of constructive communication to better relationship satisfaction to lower seizure severity emerged as a significant partial mediation (i.e., direct effect remained significant), while relationship satisfaction fully mediated (i.e., direct effect became non-significant) the link between constructive communication and greater patient activation. CONCLUSION: Our results provide insight into how relationship processes may impact the experience of epilepsy, including seizure severity and patient activation. Future research is needed.

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.].

Small cohort of patients with epilepsy showed increased activity on Facebook before sudden unexpected death.

Sudden Unexpected Death in Epilepsy (SUDEP) remains a leading cause of death in people with epilepsy. Despite the constant risk for patients and bereavement to family members, to date the physiological mechanisms of SUDEP remain unknown. Here we explore the potential to identify putative predictive signals of SUDEP from online digital behavioral data using text and sentiment analysis tools. Specifically, we analyze Facebook timelines of six patients with epilepsy deceased due to SUDEP, donated by surviving family members. We find preliminary evidence for behavioral changes detectable by text and sentiment analysis tools. Namely, in the months preceding their SUDEP event patient social media timelines show: i) increase in verbosity; ii) increased use of functional words; and iii) sentiment shifts as measured by different sentiment analysis tools. Combined, these results suggest that social media engagement, as well as its sentiment, may serve as possible early-warning signals for SUDEP in people with epilepsy. While the small sample of patient timelines analyzed in this study prevents generalization, our preliminary investigation demonstrates the potential of social media data as complementary data in larger studies of SUDEP and epilepsy.

"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.

Nursing in the spotlight: Talk about nurses and the nursing profession on Twitter during the early COVID-19 pandemic.

BACKGROUND: Nurses comprise the largest portion of healthcare workers and are integral to the COVID-19 response. Twitter has become a popular platform for the public, including nurses, to engage in pandemic-related discourse. PURPOSE: We sought to analyze the representation of the nursing profession and characterize nurses' experiences during the pandemic from tweets published in April 2020. METHODS: We analyzed tweets using natural language processing, Word Adjacency Graph (WAG) Modeling, and thematic analysis. Authors independently reviewed 10% of raw tweets in each WAG-generated topic, qualitatively analyzed tweets, and identified emerging themes. FINDINGS: Six themes emerged: Support and Recognition of Nurses, Military Metaphors, Superhuman/Spiritual Metaphors, Advocacy, Personal Experiences with Nurses, and Social/Political Commentary. Public perception of nurses was positive, but nurses conveyed harsh realities of their work. DISCUSSION: Findings highlight discrepancies in nursing experiences and public perceptions of nursing. Further research should accurately identify and convey the complexities of the nursing profession.

Inflammatory Bowel Disease Self-Management: Exploring Adolescent Use of an Online Instagram Support Community.

The purpose of this qualitative study was to explore the challenges adolescents with inflammatory bowel disease (IBD) experience with disease self-management as expressed in an online Instagram social support community. Public Instagram posts between January and December 2019 were manually collected from an online IBD support community. To focus on adolescent self-management needs, only posts from Instagram users who (1) indicated they had inflammatory bowel disease, (2) were 13-24 years old, or were in middle school, high school, or college were collected. Using thematic analysis, authors independently coded and identified emerging themes about self-management. Of 2,700 Instagram posts assessed for eligibility, 83 posts met inclusion criteria. Six major themes about inflammatory bowel disease self-management emerged: Desire for Normalcy, Dietary Changes, Education and Career, Healthcare System, Relationships With Others, and Symptoms and Complications. As the first thematic analysis of Instagram posts in an online inflammatory bowel disease community, results provide a crucial perspective of the concerns of adolescents with inflammatory bowel disease. Self-management challenges were wide-ranging and complex, underscoring the importance of IBD self-management in the adolescent population. Nurses should take a holistic approach to assess self-management challenges and tailor care to the specific needs of adolescents living with inflammatory bowel disease.

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.

The Impact of COVID-19 on HIV Self-Management, Affective Symptoms, and Stress in People Living with HIV in the United States.

COVID-19 has the potential to detrimentally impact HIV self-management in people living with HIV (PLHIV). Effective HIV-self management is critically important in managing symptoms as well as viral suppression. We examined the impact of the COVID-19 pandemic on HIV self-management, social support, social isolation, depressive symptoms, anxiety, and stress in PLHIV. 85 PLHIV were recruited from social media sites and completed an online survey. Data were collected between April 23 and 30, 2020. Participants reported increases in social isolation, depressive symptoms, anxiety, and stress and decreases in social support and overall HIV self-management from pre- to during the pandemic. Additionally, the Social Support domain and Chronic Nature of HIV domain of the HIV Self-Management Scale were also decreased from pre- to during the pandemic. The ability for PLHIV to maintain HIV self-management during this time is essential and HIV care providers should have plans in place to provide support.

Evaluation of emergency department-based seizure and epilepsy education: Exploring the need for early epilepsy self-management intervention.

Many people with epilepsy (PWE) present to the emergency department setting with their first seizure and must wait weeks or months to be seen by a specialized epilepsy provider. The time period between presentation of first seizure and entry into specialized care can be extremely stressful and precarious for PWE and their families. In order to achieve optimal outcomes, epilepsy self-management should be initiated as soon as possible, including in the emergency department setting. The purpose of this study was to review and evaluate existing epilepsy/seizure-related education materials provided to patients in the emergency room setting to determine the degree to which these materials prepare patients and their families for self-management of epilepsy, or potential epilepsy, during the interim between emergency department discharge and entry into specialized care. Twenty emergency department epilepsy/seizure patient discharge education materials were collected and evaluated using a rubric based on the framework of the Epilepsy Self-Management Scale (AESMMI). Materials were rated on a 0-3 scale based on the degree to which self-management education, resources, and skill building were included. The mean score of materials reviewed was quite low at just 10.4, with a score of 33 possible. Also concerning is that the materials scored lowest in the domains of social support, stress management, and coping, all of which are extremely important areas for PWE, especially in the early phases of the disease when patients and families are adjusting. Findings highlight the need for development of robust self-management interventions tailored to PWE in the transition period from presentation of first seizure to entry to specialized care.

Relationship and sexual satisfaction are associated with better disease self-management in persons with epilepsy.

Prior research has demonstrated that PWEs view intimate interpersonal relationships as personally important and as a substantive challenge in their lives. This is significant as high-quality intimate relationships have been linked with greater well-being and better healthcare self-management in other disease contexts. For persons with epilepsy (PWEs), self-management is critical for seizure control, lower mortality, and better quality of life. In the current study, we conducted the first known investigation into the quality of PWEs' intimate relationships and their self-management abilities. In a sample of 88 PWEs, using the Adult Epilepsy Self-Management Instrument, results demonstrate links between greater relationship satisfaction and sexual satisfaction with better self-management on seven of the eleven subscales: health communication, coping skills, social support, seizure tracking, seizure response, stress management, and wellness; satisfaction was unrelated to the treatment, safety, medical adherence, and proactivity subscales. Importantly, these results held while controlling for age, gender, social support, and presence of comorbidities. These findings provide some evidence of the importance of intimate relationships in understanding PWEs' healthcare management abilities. Given that intimate relationship dynamics have been shown to be highly amenable to intervention, this is an area of potential interest for improving self-management in PWEs.

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.

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.

Finding the Patient's Voice Using Big Data: Analysis of Users' Health-Related Concerns in the ChaCha Question-and-Answer Service (2009-2012).

BACKGROUND: The development of effective health care and public health interventions requires a comprehensive understanding of the perceptions, concerns, and stated needs of health care consumers and the public at large. Big datasets from social media and question-and-answer services provide insight into the public's health concerns and priorities without the financial, temporal, and spatial encumbrances of more traditional community-engagement methods and may prove a useful starting point for public-engagement health research (infodemiology). OBJECTIVE: The objective of our study was to describe user characteristics and health-related queries of the ChaCha question-and-answer platform, and discuss how these data may be used to better understand the perceptions, concerns, and stated needs of health care consumers and the public at large. METHODS: We conducted a retrospective automated textual analysis of anonymous user-generated queries submitted to ChaCha between January 2009 and November 2012. A total of 2.004 billion queries were read, of which 3.50% (70,083,796/2,004,243,249) were missing 1 or more data fields, leaving 1.934 billion complete lines of data for these analyses. RESULTS: Males and females submitted roughly equal numbers of health queries, but content differed by sex. Questions from females predominantly focused on pregnancy, menstruation, and vaginal health. Questions from males predominantly focused on body image, drug use, and sexuality. Adolescents aged 12-19 years submitted more queries than any other age group. Their queries were largely centered on sexual and reproductive health, and pregnancy in particular. CONCLUSIONS: The private nature of the ChaCha service provided a perfect environment for maximum frankness among users, especially among adolescents posing sensitive health questions. Adolescents' sexual health queries reveal knowledge gaps with serious, lifelong consequences. The nature of questions to the service provides opportunities for rapid understanding of health concerns and may lead to development of more effective tailored interventions.

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.