Determining the role and responsibilities of the community epilepsy nurse in the management of epilepsy.

AIMS AND OBJECTIVES: The aim of this study is to enhance the understanding of the core elements and influencing factors on the community-based epilepsy nurse's role and responsibilities. BACKGROUND: Internationally, epilepsy nurse specialists play a key role in providing person-centred care and management of epilepsy but there is a gap in understanding of their role in the community. DESIGN: A national three-stage, mixed-method study was conducted. METHODS: One-on-one, in-depth semi-structured qualitative interviews were conducted online with 12 community-based epilepsy nurses (Stage 1); retrospective analysis of data collected from the National Epilepsy Line, a nurse-led community helpline (Stage 2); and focus group conducted with four epilepsy nurses, to delve further into emerging findings (Stage 3). A thematic analysis was conducted in Stages 1 and 3, and a descriptive statistical analysis of Stage 2 data. Consolidated Criteria for Reporting Qualitative studies checklist was followed for reporting. RESULTS: Three key themes emerged: (1) The epilepsy nurse career trajectory highlighted a lack of standardised qualifications, competencies, and career opportunities. (2) The key components of the epilepsy nurse role explored role diversity, responsibilities, and models of practice in the management of living with epilepsy, and experiences navigating complex fragmented systems and practices. (3) Shifting work practices detailed the adapting work practices, impacted by changing service demands, including COVID-19 pandemic experiences, role boundaries, funding, and resource availability. CONCLUSION: Community epilepsy nurses play a pivotal role in providing holistic, person-centred epilepsy management They contribute to identifying and addressing service gaps through innovating and implementing change in service design and delivery. RELEVANCE TO CLINICAL PRACTICE: Epilepsy nurses' person-centred approach to epilepsy management is influenced by the limited investment in epilepsy-specific integrated care initiatives, and their perceived value is impacted by the lack of national standardisation of their role and scope of practice. NO PATIENT OR PUBLIC CONTRIBUTION: Only epilepsy nurses' perspectives were sought.

Extreme Stress Events in a Forensic Hospital Setting: Prevalence, Impact, and Protective Factors in Staff.

The current research explored the prevalence of stressful events in a forensic hospital setting, and their impact on staff. A systematic review of the literature on responses following exposure to extreme stress comprised 46 articles. This was followed by a Delphi study of professionals based in a forensic hospital (n = 43) to explore views on the factors that affect responses to extreme stress. This comprised three rounds to build consensus. Finally, a study of forensic hospital staff was conducted (n = 153, 47% male) to capture current trauma symptoms. The systematic review indicated three superordinate themes: outcomes adversely impacting staff and patients; personal characteristics moderating the impact of events; and organisational and interpersonal support moderating the impact of events. The Delphi supported these themes and noted the importance of factors external to the workplace and internal factors, such as self-blame. The final study demonstrated how a fifth of the workforce showed at least some trauma symptomology. Those who experienced less burnout reported lower trauma symptoms, while staff who experienced higher levels of secondary trauma at work reported higher levels of trauma symptoms. A higher level of resilience was related to lower levels of trauma symptomology. Findings are discussed in relation to the importance of recognising trauma in staff and implementing strategies to reduce and/or buffer the impact of stress on wellbeing. In doing so, the research presents a new model for consideration and development, the Impact and Amelioration of extreme stress events Model (IA-Model).

Return to driving after a diagnosis of epilepsy: A prospective registry study.

OBJECTIVE: To determine the frequency and predictors of return to driving within 1 year after a diagnosis of epilepsy. METHODS: SEISMIC (the Sydney Epilepsy Incidence Study to Measure Illness Consequences) was a prospective, multicenter, community-wide study of people of all ages with newly diagnosed epilepsy in Sydney, Australia. Demographic, socioeconomic, and clinical characteristics and driving status were obtained as soon as possible after baseline registration with a diagnosis of epilepsy. Multivariate logistic regression was used to determine predictors of return to driving at 12-month follow-up. RESULTS: Among 181 (76%) adult participants (≥18 years old) who reported driving before an epilepsy diagnosis, 152 provided information on driving at 12 months, of whom 118 (78%) had returned to driving. Driving for reasons of getting to work or place of education (odds ratio [OR] = 4.70, 95% confidence intervals [CI] = 1.87-11.86), no seizure recurrence (OR = 5.15, 95% CI = 2.07-12.82), and being on no or a single antiepileptic drug (OR = 4.54, 95% CI = 1.45-14.22) were associated with return to driving (C statistic = 0.79). More than half of participants with recurrent seizures were driving at follow-up. SIGNIFICANCE: Early return to driving after a diagnosis of epilepsy is related to work/social imperatives and control of seizures, but many people with recurrent seizures continue to drive. Further efforts are required to implement driving restriction policies and to provide transport options for people with epilepsy.

An Australian nationwide survey on medicinal cannabis use for epilepsy: History of antiepileptic drug treatment predicts medicinal cannabis use.

Epilepsy Action Australia conducted an Australian nationwide online survey seeking opinions on and experiences with the use of cannabis-based products for the treatment of epilepsy. The survey was promoted via the Epilepsy Action Australia's main website, on their Facebook page, and by word of mouth. The survey consisted of 39 questions assessing demographics, clinical factors, including diagnosis and seizure types, and experiences with and opinions towards cannabis use in epilepsy. A total of 976 responses met the inclusion criteria. Results show that 15% of adults with epilepsy and 13% of parents/guardians of children with epilepsy were currently using, or had previously used, cannabis products to treat epilepsy. Of those with a history of cannabis product use, 90% of adults and 71% of parents reported success in reducing seizure frequency after commencing cannabis products. The main reasons for medicinal cannabis use were to manage treatment-resistant epilepsy and to obtain a more favorable side-effect profile compared to standard antiepileptic drugs. The number of past antiepileptic drugs tried was a significant predictor of medicinal cannabis use in both adults and children with epilepsy. Fifty-six percent of adults with epilepsy and 62% of parents/guardians of children with epilepsy expressed willingness to participate in clinical trials of cannabinoids. This survey provides insight into the use of cannabis products for epilepsy, in particular some of the likely factors influencing use, as well as novel insights into the experiences of and attitudes towards medicinal cannabis in people with epilepsy in the Australian community. This article is part of a Special Issue entitled "Cannabinoids and Epilepsy".

Frequency and predictors of psychological distress after a diagnosis of epilepsy: A community-based study.

OBJECTIVE: The objective of the study was to determine the frequency and predictors of psychological distress after a diagnosis of epilepsy. METHODS: The Sydney Epilepsy Incidence Study to Measure Illness Consequences (SEISMIC) was a prospective, multicenter, community-based study of people of all ages with newly diagnosed epilepsy in Sydney, Australia. Analyses involved multivariate logistic regression and multinomial logit regression to identify predictors of psychological distress, assessed using the Hospital Anxiety and Depression Scale (HADS) and the Strengths and Difficulties Questionnaire (SDQ), as part of structured interviews. RESULTS: Psychological distress occurred in 33% (95% confidence interval [CI] 26 to 40%) and 24% (95% CI 18 to 31%) of 180 adults at baseline and 12months, respectively, and 23% (95% CI 14 to 33%) of 77 children at both time points. Thirty adults and 7 children had distress at baseline who recovered at 12months, while 15 adults and 7 children had new onset of distress during this period. History of psychiatric or behavioral disorder (for adults, odds ratio [OR] 6.82, 95% CI 3.08 to 15.10; for children, OR 28.85, 95% CI 2.88 to 288.60) and higher psychosocial disability (adults, OR 1.17, 95% CI 1.07 to 1.27) or lower family functioning (children, OR 1.80, 95% CI 1.08 to 3.02) were associated with psychological distress (C statistics 0.80 and 0.78). CONCLUSIONS: Psychological distress is common and fluctuates in frequency after a diagnosis of epilepsy. Those with premorbid psychological, psychosocial, and family problems are at high risk of this adverse outcome.

Personality structure among prisoners: how valid is the five-factor model, and can it offer support for Eysenck's theory of criminality?

BACKGROUND: Research with offenders has tended to use a categorical system of diagnosis or a three-factor model. There is growing evidence among non-offending groups that a five-factor model (FFM), which is more holistic and emphasises strengths as well as limitations, may be more clinically useful. AIM: The purpose of this study was to test the validity of the FFM of personality in a sample of adult male prisoners. It was predicted that they would show higher scores for extraversion (E) and lower scores for emotional stability (ES) [the equivalent of higher neuroticism (N)], that E would be predicted by prison experience and age and that the FFM would be confirmed as a better fit to the data over Eysenck's three-factor [P(psychoticism)EN] model. METHODS: Two independent samples of adult male prisoners were asked to complete the International Personality Item Pool while locked in their cells over the lunchtime period. Parallel and confirmatory factor analyses were used to test the hypotheses. RESULTS: There was a 65 and 75% response rate across the independent samples, resulting in samples of 259 and 183, respectively. Overall, more positive personality traits were evidenced across both samples. E was not predicted by prison experience or age, with increased ES related to increased age in only one sample. The best-fitting model comprised five factors, but represented a variant of the FFM. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The value of applying broad conceptualisations of personality to special samples is discussed, with the importance of accounting for positive, as well as negative, traits acknowledged. The presence of increased positive traits in comparison to negative traits is not in keeping with Eysenck's original personality theory of criminal behaviour, with the study highlighting value in accounting more for environmental factors.

Staff Beliefs Toward Self-Injurious Behavior in Patients: A Study of Secure Services.

ABSTRACT: Staff beliefs toward patient self-harm in secure forensic services are explored, capturing forensic nurses and other clinical staff from four secure units from one National Health Service trust, comprising high through low and forensic learning disability. One hundred fifty-five respondents took part (overall completion rate: 61%). The Theory-Driven Measure of Self-Injurious Behavior and the Suicide Competency Assessment Form were completed. It was predicted that higher competency and increased levels of training would associate with beliefs toward patient self-harm. Beliefs differed in accordance to location; perceiving self-injurious behavior as planned and within patient control was endorsed more in high-security settings by forensic nurses, with nurses in high security also more likely to endorse the perception that patients engaging in such behaviors were able to cope and felt valued. Competence and training experience were identified as factors of relevance. The study offers suggestions for future research, including a focus on capturing the environment, exploring "endorsed beliefs" as opposed to "negative attitudes," and proposing the concept of "professional exposure to self-harm" as an important variable.

Understanding Factors Relevant to Self-Injurious Behavior in a High-Risk Secure Psychiatric Sample: Developing the Theory-Driven Measure of Self-Injurious Behavior Engagement.

ABSTRACT: A measure for the assessment of self-injurious behavior is developed. Commencing with a Delphi composed of 33 experts: detached experts (academics), experts by exposure (staff), and experts by experience (patients), the Theory-driven Measure of Self-Injurious Behavior Engagement is outlined. This is then examined in two samples: high-secure psychiatric male patients (n = 76) and high-secure psychiatric nursing staff (n = 100; 50 men, 50 women). We predicted that all components of the Theory of Planned Behavior and the capacity, belongingness, and burdensomeness elements of the Interpersonal Psychological Theory of Suicidal Behavior would be confirmed as important inclusions. Results initially showed the importance of including intention, perceived behavioral control, affect, capacity, and burdensomeness. The role of environmental and individual factors, such as coping, was captured as additional variables of value. However, the structure of items differed between patients and staff. Being valued consistently represented a core consideration, as did capacity and affect. Directions for future research are indicated.

Determining the role and responsibilities of the Australian epilepsy nurse in the management of epilepsy: a study protocol.

INTRODUCTION: Epilepsy is a common neurological condition affecting between 3% and 3.5% of the Australian population at some point in their lifetime. The effective management of chronic and complex conditions such as epilepsy requires person-centred and coordinated care across sectors, from primary to tertiary healthcare. Internationally, epilepsy nurse specialists are frequently identified as playing a vital role in improving the integration of epilepsy care and enhancing patient self-management. This workforce has not been the focus of research in Australia to date. METHODS AND ANALYSIS: This multistage mixed-method study examines the role and responsibilities of epilepsy nurses, particularly in primary and community care settings, across Australia, including through the provision of a nurse helpline service. A nationwide sample of 30 epilepsy nurses will be purposively recruited via advertisements distributed by epilepsy organisations and through word-of-mouth snowball sampling. Two stages (1 and 3) consist of a demographic questionnaire and semistructured interviews (individual or group) with epilepsy nurse participants, with the thematic data analysis from this work informing the areas for focus in stage 3. Stage 2 comprises of a retrospective descriptive analysis of phone call data from Epilepsy Action Australia's National Epilepsy Line service to identify types of users, their needs and reasons for using the service, and to characterise the range of activities undertaken by the nurse call takers. ETHICS AND DISSEMINATION: Ethics approval for this study was granted by Macquarie University (HREC: 52020668117612). Findings of the study will be published through peer-reviewed journal articles and summary reports to key stakeholders, and disseminated through public forums and academic conference presentations. Study findings will also be communicated to people living with epilepsy and families.

Psychopathy and trauma: Exploring a potential association.

This research presents a series of linked studies exploring the association between psychopathy and trauma. It comprises a systematic review (n = 58), followed by an expert Delphi (n = 19), and patient file trawl using a male forensic psychiatric patient sample (n = 66). An association between psychopathy and developmental trauma was predicted. It was further predicted that different types of trauma would be associated with different subtypes of psychopathy and that the severity of trauma would be important. The systematic review identified the following core themes: presence of Post-Traumatic Stress Disorder and/or symptoms; trauma type; trauma/abuse variables; and sex differences. The ensuing Delphi study indicated the specific variant of psychopathy to be important, with secondary psychopathy particularly relevant. The final study found that the severity of developmental trauma related differentially to primary and secondary psychopathy. Implications and directions for future research are discussed, most notably with regards to the conceptualisation of psychopathy.

Coping, mental health, and subjective well-being among mental health staff working in secure forensic psychiatric settings: Results from a workplace health assessment.

Given raised rates of patient suicide and violence in secure psychiatric facilities, staff in such settings are arguably at increased risk for burnout and reduced mental health. The present article responds to the recent U.K. National Institute for Health and Care Excellence (NICE) call to assess workforce well-being. This article held the following aims: (1) to quantify existing levels of mental health (i.e., depression, anxiety, distress, and posttraumatic stress) and subjective well-being (i.e., job satisfaction, life satisfaction, and four domains of burnout) and (2) to evaluate Coping Self-Efficacy (CSE) and Need for Affect (NFA) as factors associated with staff mental health and subjective well-being. We conducted a voluntary cross-sectional health needs assessment of forensic mental health staff (N = 170) between 2017 and 2018 from one National Health Service (NHS) Trust. Descriptive findings suggest staff possessed nonclinical average ranges of mental health symptoms. Subjective well-being findings showed burnout was relatively low, whereas job and life satisfaction were modest. Regression models demonstrated that (a) thought/emotion stopping beliefs were negatively associated with psychological exhaustion; (b) social support beliefs were positively associated with life satisfaction and job enthusiasm; (c) NFA Avoidance was linked with poor mental health and burnout, and; (d) NFA Approach was positively associated with two health subjective well-being indicators. Overall, assessment results suggest NHS forensic mental health staff reported relatively good health. Cognitive- and emotion-focused coping beliefs demonstrate promise as content for prevention programming. Using Emotional Labor Theory, we offer psychological services-based recommendations for future prevention programming and research. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Course and impact of sleep disturbance in newly diagnosed epilepsy: A prospective registry study.

OBJECTIVE: To determine the course of sleep distrurbance (insomnia symptoms and short sleep duration) after a diagnosis of epilepsy and their associations with seizure control, mood, disability, and quality of life. PATIENTS AND METHODS: One hundred and sixty-nine adults were drawn from the Sydney Epilepsy Incidence Study to Measure Illness Consequences (SEISMIC), a prospective, multicenter, community-wide study in Sydney, Australia. Socio-demographic, psychosocial, clinical characteristics, and information on sleep disturbance were obtained early (median 48 [IQR15-113] days) after a diagnosis of epilepsy, and at 12 months. Logistic regression models were used to determine associations between patterns of sleep disturbance with outcomes at 12 months. RESULTS: Insomnia symptoms and/or short sleep duration were present in 18-23% of participants at both time points, with over half (54-61%) showing a chronic pattern. There was no association of sleep disturbance pattern with recurrent seizures, medication use or disability. Chronic insomnia symptoms and short sleep duration were strongly associated with worse mental health (aOR 3.76, 95% CI 1.28-11.06; and aOR 5.41, 95% CI 1.86-15.79) and poorer quality of life at 12 months (aOR 3.02, 95% CI 1.03-8.84; and aOR 3.11, 95% CI 1.10-8.82), after adjusting for clinical features of epilepsy and comorbidity. Those whose sleep disturbance remitted had no adverse outcomes. CONCLUSIONS: Insomnia symptoms and short sleep duration are less common in people with recently-diagnosed than chronic epilepsy. The temporal association with poor psycholosocial outcomes supports specific interventions addressing sleep disturbance.

Predicting security incidents in high secure male psychiatric care.

PURPOSE: The contribution of environmental and organisational factors in predicting security incidents within a high secure male psychiatric setting is considered using a series of connected studies; a systematic literature review comprising 41 studies and five inquiries (Study 1) to identify core themes of likely importance; application of these themes to incident data through assessment of the ward culture, as perceived by 73 male psychiatric patients and 157 staff (Study 2); and detailed examination of noted relevant factors in the form of interpersonal style, meaningful activity and physical environmental characteristics in a study comprising 62 patients and 151 staff (Study 3). It was predicted that security incidents would be identified through inclusion of environmental and organisational factors. RESULTS: The systematic review demonstrated the importance of accounting for staff characteristics, patient interactions, physical environment and meaningful activity. The subsequent study noted the importance of only specific aspects of the social environment, with the final study demonstrating that incidents were associated with controlling interpersonal styles of staff, lower perceived fairness, and less involvement in off-ward activities. Perception of fair treatment and off-ward activities mediated the staff interpersonal style and security incident relationship. CONCLUSIONS: The research proposes a preliminary framework - the McKenna Framework for understanding Incidents in Secure Settings (M-FISS) - to explain the occurrence of security incidents in secure psychiatric care.

Disability patterns over the first year after a diagnosis of epilepsy.

OBJECTIVE: To determine the patterns and predictors of disability over the first 12 months after a diagnosis of epilepsy. PATIENTS AND METHODS: The Sydney Epilepsy Incidence Study to Measure Illness Consequences (SEISMIC) was a prospective, multicenter, community-based study of people with newly diagnosed epilepsy in Sydney, Australia. Disability was assessed using the World Health Organization's, Disability Assessment Schedule (WHODAS) 2.0 12-item version, at baseline (i.e. within 28 days of diagnosis) and 12 months post-diagnosis. Demographic, socioeconomic, clinical and epilepsy-related data, obtained through structured interviews, were entered into multivariable linear regression and shift analysis to determine predictors of greater disability. RESULTS: Of 259 adults (≥18 years), 190 (73%) had complete WHODAS at baseline (mean ± SD scores 4 ± 6) and follow-up (4 ± 8). After adjustment for age, sex and co-morbidity, greater overall disability at 12 months was associated with lower education (P = 0.05), economic hardship (P = 0.004), multiple antiepileptic medications (P = 0.02) and greater disability (P < 0.001) at the time of diagnosis; these variables explained 38.3% of the variance. Among the 12 WHODAS items, "being emotionally affected by health problems" was the most frequent disability problem identified at both time points (all P < 0.0001). The proportion of participants without problems in that domain improved over 12 months (from 24% to 50%, P < 0.0001), whereas the other 11 items remained relatively stable. Independent baseline predictors of a worse emotional outcome at 12 months were severe/extreme emotional distress (odds ratio [OR] 4.52, 95% confidence intervals [CI] 1.67-12.24), economic hardship (OR 2.30, 95% CI 1.24-4.25) and perceived stigma (OR 2.02, 95% CI 1.03-3.93). CONCLUSION: Most people report problems with emotional health after a diagnosis of epilepsy but many recover over the next 12 months. Services addressing the social and psychological impact of diagnosis may be needed to improve outcome.

Intra-group aggression among prisoners: bullying intensity and exploration of victim-perpetrator mutuality.

A new multiple indicator method of assessing bullying behaviour is employed (Direct and Indirect Prisoner behaviour Checklist - Scaled version [DIPC-SCALED]) with 605 adult prisoners (487 men and 118 women). The study explores if the DIPC-SCALED is a reliable method comprising of identifiable aggression factors; if prisoners can be classified into groups based on behavioural frequency; and if there is evidence for mutual victim/perpetrator groups. The DIPC-SCALED proved reliable, comprising of a number of aggression factors. Prisoners could be classified into groups based on behavioural frequency with one-fifth classified into an "intense" perpetrator and/or victim group. Evidence for mutual perpetrator/victims was found. Results are discussed with regards to the method used and the value in accounting for behavioural frequency in group classification.

Creating a community coalition to address violence.

Building a community-wide coalition to address violence evolved out of a five-year federally funded project on abuse during pregnancy. The setting for this coalition building is Haverhill, Massachusetts, a city of about 60,000, located northeast of Boston in the Merrimack River Valley. For nearly eight years, representatives of more than 30 agencies and institutions have been meeting monthly and creating programs and strategies to address violence in homes, schools, and neighborhoods, and designing interventions for children witnessing this violence. The purpose of this article is to describe the process of coalition building and provide an analysis of this work.

Initial development of the Psychopathic Processing and Personality Assessment (PAPA) across populations.

Three studies describe development of the Psychopathic Processing and Personality Assessment (PAPA). Study one outlines a literature review and Expert Delphi (n=32) to develop the initial PAPA. Study two validates the PAPA with 431 participants (121 male prisoners and 310 university students: 154 men, 156 women), also using the Levenson Self Report Psychopathy scale and a measure of cognitive schema and affect. Study three refined the PAPA, employing it with 50 male students and 40 male forensic psychiatric patients using clinical (interview) assessments of psychopathy: the Psychopathy Checklist - Screening Version and the Affect, Cognitive and Lifestyle assessment. The PAPA comprised four factors; dissocial tendencies; emotional detachment; disregard for others; and lack of sensitivity to emotion. It positively correlated with existing psychopathy measures. Variations across PAPA subscales were noted across samples when associated with clinical measures of psychopathy. Support for the validity of the PAPA was indicated across samples. Directions for research and application are outlined.

Initial development of an implicit and explicit approach to assess psychopathy.

Four studies outline the ACL (Affective, Cognitive and Lifestyle) assessment, a new means of assessing psychopathy capturing implicit and explicit functioning. Studies 1 and 2 comprised students (Study 1, n=42, 14 men, 28 women; Study 2, n=50 men), Study 3 comprised 80 young prisoners (men) and Study 4, 40 forensic psychiatric patients (men). It was predicted that the ACL affective, cognitive and interpersonal components would positively correlate with the interpersonal factor of another measure of psychopathy (PCL-SV), whereas the ACL Lifestyle component would correlate with the criminal history/lifestyle component of the PCL-SV. Evidence for internal reliability for the ACL was noted. The ACL correlated as expected with the PCL-SV although variation across samples was noted. Implicit affect and specific aspects of cognition positively correlated with increased psychopathy on the PCL-SV. Implicit affect correlated differently across samples. Findings are discussed regarding implications. Directions for future research are indicated.

Sleep and its association with aggression among prisoners: Quantity or quality?

OBJECTIVE: The current paper aims to examine the association between self-reported sleep quality and quantity and how these relate to aggression motivation and hostile cognition in a male prisoner sample. The cognitive component of sleep, namely perception, is consequently a variable of particular interest and one neglected by previous research. METHODS: Two independent studies are presented. The first comprised 95 adult male prisoners who completed a sleep quality index along with measures of implicit and explicit aggression. The second study extended this to consider aggression motivation and hostile attribution biases using a sample of 141 young male adult prisoners. RESULTS: In study one, sleep quantity and indicators of sleep quality were found not to associate with aggression whereas the perception of poor sleep did; those perceiving poor sleep quality were more likely than those perceiving good sleep to report they had perpetrated aggression in the previous week and to report higher levels of implicit aggression. Study two found that while increased indicators of poor sleep quality were associated with lower prosocial attribution tendencies and higher levels of reactive and proactive aggression, sleep quantity was not associated. The perception of poor quality sleep was important; those perceiving poor sleep were more likely to report higher levels of reactive and proactive aggression than those reporting good sleep. CONCLUSIONS: Collectively the studies highlight the importance of accounting for the perception of sleep quality as an important cognitive component in understanding the association between sleep and aggression.