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.

Epilepsy care delivery during COVID-19 in resource-limited countries: A survey in collaboration with International Epilepsy Equity Group.

BACKGROUND: The impact of pandemic has had worse effects in countries with already stretched healthcare resources. study's The study aimed to explore changes in epilepsy care delivery in resource-limited countries during and since the acute phase of the COVID-19 pandemic. METHOD: A cross-sectional survey was conducted in 22 countries among healthcare providers (HCPs) caring for persons with epilepsy (PWE), in collaboration with newly formed global collaborators, the International Epilepsy Equity Group. Findings were compared based on the World Bank Ranking (WBR) and HCPs' practice type. Data were analyzed using Chi-square tests (α = 0.05) and pairwise multiple comparisons with α = 0.017 (Bonferroni adjustment). Open-ended responses were analyzed using thematic analysis. FINDINGS: A total of 241 HCPs participated in the study. Of these, 8.30%, 65.98%, and 21.99% were from high-income (HIC), upper-middle-income (UMIC), and lower-middle-income countries (LMICs), respectively. Among HCPs, 31.12% were adult specialists, and 43.98% were pediatric specialists. During the acute phase of the pandemic, HCPs reported that the major barrier for PWE was difficulty reaching physicians/healthcare providers. Except for difficulty reaching physicians/healthcare providers (WBR P = 0.01 HIC < LMIC), no other significant differences in barriers during the acute phase were observed. Since the acute phase of the pandemic, the major concern for PWE was fear of getting infected with the SARS-CoV-2 virus. Significant differences in concerns since the acute phase included lockdowns (WBR: P = 0.03 UMIC < LMIC), fiscal difficulties (WBR: P < 0.001 UMICs < LMICs, UMICs < HIC; practice type: P = 0.006 adult < others, pediatrics < others), clinic closure (WBR: P = 0.003 UMIC < HIC; practice type: P =< 0.001 adult < others, pediatric < others), and long waiting times (WBR: P = 0.005, LMIC < UMIC, LMIC < HIC; practice type: P = 0.006 pediatric < adults). Diagnostic services, including EEG, MRI, CT (practice type: P < 0.001, adult < others; pediatric < others), and lab work (WBR: P = 0.01 UMIC < HIC), were restricted. The telephone was the most reported teleconsultation method used. Except for SMS/texting (WBR P = 0.02 UMIC < LMIC), there were no significant differences in teleconsultation methods used. DISCUSSION: There is a high probability that the initial wave and consequent reduction of in-person care, restriction of health services, and fiscal difficulties affecting all involved in care delivery, led to the disruption of epilepsy care. Additional support are needed in resource-limited countries to cope with future pandemics.

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.

Barriers and facilitators to treatment seeking behaviors for depression, epilepsy, and schizophrenia in low- and middle-income countries: A systematic review.

Despite the severe consequences, the treatment gap for depression, epilepsy, and schizophrenia continues to be a major concern in low and middle-income countries (LMICs). We conducted a systematic review of literature on barriers and facilitators of treatment-seeking behaviors from the perspective of individuals living with depression, epilepsy, and schizophrenia and stakeholders in LMICs. Knowledge deficits, beliefs, and stigma were barriers to treatment-seeking across disorders. The most cited facilitators were demographics, socioeconomic status, and collaboration with traditional healers. Culturally sensitive interventions in collaboration with stakeholders within the community can facilitate treatment-seeking behaviors among people living with depression, epilepsy, and schizophrenia.

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.

Global Health and Epilepsy: Update and Future Directions.

PURPOSE OF REVIEW: Efforts to improve epilepsy care outcomes in low- and middle-income countries (LMICs) are occurring through global health work. Despite an increase in these efforts, several barriers exist and a significant epilepsy treatment gap remains. This paper will review barriers to epilepsy care in LMICs and summarize recent published and unpublished data about global health projects which aimed to improve epilepsy care in these regions, focusing on work in the past 5 years. RECENT FINDINGS: There are multiple recent and ongoing projects including clinical, research, education, and advocacy programs. We conclude that collaborative efforts are necessary in order to develop long-term and sustainable projects. The creation of a database and a formal method of communication between stakeholders can contribute to improving the efficiency and impact of global health efforts in epilepsy.

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.

Validation of a Novel Neurologic Assessment Test for Healthcare Staff.

ABSTRACT: BACKGROUND: To measure the effectiveness of an educational intervention, it is essential to develop high-quality, validated tools to assess a change in knowledge or skills after an intervention. An identified gap within the field of neurology is the lack of a universal test to examine knowledge of neurological assessment. METHODS: This instrument development study was designed to determine whether neuroscience knowledge as demonstrated in a Neurologic Assessment Test (NAT) was normally distributed across healthcare professionals who treat patients with neurologic illness. The variables of time, knowledge, accuracy, and confidence were individually explored and analyzed in SAS. RESULTS: The mean (standard deviation) time spent by 135 participants to complete the NAT was 12.9 (3.2) minutes. The mean knowledge score was 39.5 (18.2), mean accuracy was 46.0 (15.7), and mean confidence was 84.4 (24.4). Despite comparatively small standard deviations, Shapiro-Wilk scores indicate that the time spent, knowledge, accuracy, and confidence are nonnormally distributed ( P < .0001). The Cronbach α was 0.7816 considering all 3 measures (knowledge, accuracy, and confidence); this improved to an α of 0.8943 when only knowledge and accuracy were included in the model. The amount of time spent was positively associated with higher accuracy ( r2 = 0.04, P < .05), higher knowledge was positively associated with higher accuracy ( r2 = 0.6543, P < .0001), and higher knowledge was positively associated with higher confidence ( r2 = 0.4348, P < .0001). CONCLUSION: The scores for knowledge, confidence, and accuracy each had a slightly skewed distribution around a point estimate with a standard deviation smaller than the mean. This suggests initial content validity in the NAT. There is adequate initial construct validity to support using the NAT as an outcome measure for projects that measure change in knowledge. Although improvements can be made, the NAT does have adequate construct and content validity for initial use.

Pushing Through: How Older Adult Caregivers Manage Wound Care.

Older adults are taking on caregiving roles and are performing complex care procedures, such as wound care, in the home setting yet there is a dearth of knowledge about how older adult caregivers manage the performance of wound care on a day-to-day basis. The theoretical framework developed in this research describes this process of managing the caregiving role. Interviews with 18 caregivers aged 65 years and older who were performing wound care in the home for a care recipient yielded a theoretical framework from their narratives using a qualitative grounded theory analysis. The resultant theoretical framework, Pushing Through, consisted of five phases: (a) accepting the role, (b) lacking confidence, (c) creating a system, (d) trusting in self, and (e) owning the outcomes. An understanding of the older adult caregiver's process creates opportunities for healthcare professionals to develop and implement evidence-based interventions.

Older Adult Caregivers' Perspectives on Wound Care Resources: A Qualitative Study.

With an aging population, increasing numbers of older adults are assuming a caregiving role, including performing complex care procedures, such as wound care. Access to and use of resources are associated with better physical and mental health for caregivers. A thematic analysis of qualitative interviews with adult caregivers aged ≥65 years performing wound care identified seven resources supportive of the caregiver role, including: (a) access to expert guidance from health care professionals; (b) written instructions; (c) relationships with health care professionals for obtaining wound care supplies; (d) need for additional medical equipment; (e) financial resources; (f) coverage for caregiver personal time; and (g) select persons for caregiver social and emotional support. Given that older adults are increasingly cast into caregiver roles in the home setting, providing resources to sustain care recipients and their caregivers is critical. [Research in Gerontological Nursing, 16(4), 194-201.].

Challenges and Opportunities in Stroke Nursing Research: Global Views From a Panel of Nurse Researchers.

ABSTRACT: INTRODUCTION: A diverse group of neuroscience nurse experts discussed stroke nursing research at the 5th International Neuroscience Nursing Research Symposium. Panel experts from Singapore, India, Australia, New Zealand, the Philippines, Malawi, Germany, Palestine, Kenya, Japan, and the United States collaborated to examine similarities and differences in nurse-led stroke research conducted in their home countries. This article reflects panel insights on challenges and opportunities for nurse-led stroke research. DISCUSSION: The research challenges discussed include nursing independence, the processes of informed consent and randomization process, obtaining adequate independent funding, recruiting research subjects, and working with vulnerable groups. The major opportunities to leverage and improve stroke nursing research include facilitating the nurse investigator role, information digitalization, improving health literacy, and collaboration between nurse researchers. SUMMARY: We are living in a volatile, uncertain, complex, and ambiguous world, and the COVID-19 pandemic has accentuated many challenges. There is a need to allow for creativity around recruitment and conducting stroke research. The use of technology reduces travel needs and mitigates many safety, financial, and transportation-related problems. Although the pandemic has highlighted the challenges faced when conducting stroke-related research, there are remarkable similarities in opportunities to improve outcomes.

Pattern and frequency of neurological and neurosurgical care of adult inpatients and outpatients at a tertiary referral hospital in Kenya.

OBJECTIVE: To describe the patterns and burden of neurological and neurosurgical disorders at a national tertiary level referral hospital in western Kenya. METHODS: We conducted a three-month period prevalence study. We recruited consecutive adult patients seeking neurological-neurosurgical care in both inpatient and outpatient settings at Moi Teaching and Referral Hospital. RESULTS: 833 participants were included. The age range was between 19 year and 99 years (mean age = 45.3 years). The most common diagnoses among neurology inpatients were meningitis (12%), ischemic stroke (11.0%) and epilepsy/seizure (6.7%). Among neurology outpatients, epilepsy (35.1%) and ischemic stroke (18.8%) were the most common diagnoses. The most common neurosurgery inpatient diagnosis was hemorrhagic stroke (16.3%) and among outpatients, the most common diagnoses were traumatic brain injury (17.4%) and hemorrhagic stroke (16.3%). Overall, 471 (56.5%) patients underwent HIV testing, of which, 89 (18.9%) were HIV positive and 382 (81.1%) were HIV negative. Thirty-one inpatient deaths (male 58%), attributable to neurological and neurosurgical disorders, occurred during the study period. Meningitis was the most common cause of death. CONCLUSIONS: The findings suggest that meningitis, stroke, epilepsy, and traumatic brain injury were the most common diagnosis. More resources and efforts should be directed towards prevention, diagnosis and management of these conditions in the region.

Challenges in Conducting Ethnography Among Hidden Populations in Rural South India.

International qualitative researchers confront many challenges while conducting studies among hidden populations. This article describes challenges experienced as a US-based researcher and native Indian woman conducting a focused ethnography among women with epilepsy in rural south India. The 5 challenges encountered during this research were (1) obtaining ethical approvals to conduct the study, (2) recruiting hidden participants, (3) being a halfie, (4) addressing a sensitive topic with a vulnerable population, and (5) managing researcher distress and intrapersonal conflicts. The article also details strategies used to confront these challenges.

Qualitative Analysis of Student Perceptions of Bachelor of Science-to-Doctor of Philosophy in Nursing Programs.

BACKGROUND: To address the shortage of Doctor of Philosophy (PhD)-prepared nursing faculty, universities in the United States offer direct-entry Bachelor of Science in Nursing (BSN)-to-PhD nursing programs. Little research has been conducted to explore students' perceptions of these programs and to formally evaluate the successes and opportunities for growth of this academic track. METHOD: Focusing on the perceptions and experiential reflection of BSN-to-PhD education, a survey with open-ended questions was distributed among voluntary participants who are current BSN-to-PhD students or recent graduates (within 5 years) from various universities in the United States. Textual data were analyzed using a qualitative descriptive approach with thematic analysis. RESULTS: This article elaborates on opportunities, challenges, and suggestions related to this educational route, as recognized by 21 participants from seven universities. CONCLUSION: The study findings may facilitate discussion among nurse educators to revise programs to be congruent with the needs of current students while paving the way for future scholars.