‘Epileptic’, ‘epileptic person’ or ‘person with epilepsy’? Bringing quantitative and qualitative evidence on the views of UK patients and carers to the terminology debate

How to refer to someone with epilepsy is a divisive topic. Arguments for and against different approaches, including traditional adjective labels, disability-first labels, and person-first terms have been presented. The preferences of those with epilepsy and their family and friends have, though, never been determined. This study provides this information for the first time. Via epilepsy interest groups and organizations in the UK and Republic of Ireland, 638 patients and 333 significant others completed an online survey. Three distinct phrases were presented: “They're epileptic” (traditional label), “They're an epileptic person” (disability-first) and “That person has epilepsy” (person-first). Participants identified which they preferred and explained their choices. Patients' median age was 39, with 69% having experienced seizures in the prior 12 months. Significant others were typically parents. Most (86.7%) patients and significant others (93.4%) favored the person-first term. Traditional and disability-first terms were “Disliked”/“Strongly disliked”. Regression found it was not possible to reliably distinguish between participants favoring the different terms on the basis of demographics. Qualitative analysis of answers to open-ended questions, however, revealed most favored person-first terminology as by not including the word ‘epileptic’ and by affirming personhood before disability, it was felt to less likely restrict a listener's expectations or evoke the condition's negative association. It was also considered to suggest the person being referred to might have some mastery over their condition. The findings indicate consensus amongst these key stakeholders others for the use of person-first terminology in English. A truly informed debate on the topic can now begin.     

Some further thoughts on the subject of ‘internal cohabitation’ and the genesis of an ‘other’: A response to Tim Wright's paper ‘Art therapy and the concept of internal cohabitation’

Abstract

This paper is a response to Tim Wright's article ‘Art Therapy and the Concept of Internal-Cohabitation’ (Inscape, Volume 9, No.1 2004, pp. 26–37). Wright presented his work using a potentially universally applicable model of the mind(s). I begin to look at the complexity of his argument and open up some of the debates around the genesis of an ‘other’ mind. For example, is it an aspect of the self or not? If there is an ongoing, internal view different to the one identified as a relational self, how is it formed? And can this ‘other’ presence offer a benign hand in creativity? Whilst I do not endeavour to provide answers to these questions I support the notion that part of the art therapy work needs to involve an exploration of the validity of some analytic assumptions about ‘self’ and ‘other’ if there is to be a consistent, non-contradictory approach.     

Social learning,culture and the ‘socio-cultural brain’ of human and non-human primates

Noting important recent discoveries, we review primate social learning, traditions and culture, together with associated findings about primate brains. We survey our current knowledge of primate cultures in the wild, and complementary experimental diffusion studies testing species’ capacity to sustain traditions. We relate this work to theories that seek to explain the enlarged brain size of primates as specializations for social intelligence, that have most recently extended to learning from others and the cultural transmission this permits. We discuss alternative theories and review a variety of recent findings that support cultural intelligence hypotheses for primate encephalization. At a more fine-grained neuroscientific level we focus on the underlying processes of social learning, especially emulation and imitation. Here, our own and others’ recent research has established capacities for bodily imitation in both monkeys and apes, results that are consistent with a role for the mirror neuron system in social learning. We review important convergences between behavioural findings and recent non-invasive neuroscientific studies.     

‘Following the word of God’: Empirical insights into managerial perceptions on spirituality,culture and health

Abstract

This article focuses on managers in a selected South African organization and the connections they draw between mental health, culture and spirituality within the workplace. The aim is to gain a deeper understanding of the interrelationships in this complex and growing scientific discourse and to respond to the research question of how mental health, culture and spirituality are interrelated from a managerial perspective. The study follows an inductive single case study approach within the phenomenological paradigm. Qualitative research methods using in-depth interviews and observation were used. The sample comprised 27 managers within the international South African automotive organization. The findings show that not only culture, but also spirituality and religion in particular, influence mental health and well-being of managers at work. Conclusions are drawn and recommendations made.     

How does the ‘environment’ come to the person? The ‘ecology of the person’ and addiction

Currently, psychiatry lacks a field that can be called “theoretical psychiatry”, which uses theoretical concepts and explanatory models: The main stream of research is to collect data of all kinds in the hope that the computational Big Data approach will shed a bright light on the black box of mental disorders. Accordingly, the biology-based Research Domain Criteria of the National Institute of Mental Health have been established. However, as philosophical analyses of concepts and methods have shown, several epistemological gaps stand in the way of a consistent multilevel understanding of mental disorders. Also, the implicit ontological problems in the biological reduction of the psychosocial level and in the integration of so-called hard and soft disciplines are mostly left out. As a consequence, a non-reductive psychological theory of mental disorders is sought that also integrates correlating biological and sociological issues. In this context, one example of promising nonreductive psychiatric research is the option of systems/network psychopathology. The possibilities for integrating different psychological perspectives are highlighted for the field of addiction research and treatment, where pragmatic behaviorist approaches dominate over the theory-based practice of psychoanalysis. In comparing the theoretical constructs of these two approaches, the relevance of the concept of “(social) environment” as the wealth of influential sociocultural factors is discussed at levels superior to the interpersonal micro-level, namely the organizational meso- and societal macro level, which is not sufficiently considered in current biopsychiatry. On this basis of argumentation, the usefulness of grounding and framing psychiatry through the field of ecological sciences, especially human ecology, is demonstrated. Finally, to this end, an outline of an ecological model of mental health and illness is presented.     

Views of Addiction Neuroscientists and Clinicians on the Clinical Impact of a ‘Brain Disease Model of Addiction’

Addiction is increasingly described as a “chronic and relapsing brain disease”. The potential impact of the brain disease model on the treatment of addiction or addicted individuals’ treatment behaviour remains uncertain. We conducted a qualitative study to examine: (i) the extent to which leading Australian addiction neuroscientists and clinicians accept the brain disease view of addiction; and (ii) their views on the likely impacts of this view on addicted individuals’ beliefs and behaviour. Thirty-one Australian addiction neuroscientists and clinicians (10 females and 21 males; 16 with clinical experience and 15 with no clinical experience) took part in 1 h semi-structured interviews. Most addiction neuroscientists and clinicians did not uncritically support the use of brain disease model of addiction. Most were cautious about the potential for adverse impacts on individuals’ recovery and motivation to enter treatment. While some recognised the possibility that the brain disease model of addiction may provide a rationale for addicted persons to seek treatment and motivate behaviour change, Australian addiction neuroscientist and clinicians do not assume that messages about “diseased brains” will always lead to increased treatment-seeking and reduced drug use. Research is needed on how neuroscience research could be used in ways that optimise positive outcomes for addicted persons.     

Living with ‘Hwa-byung’: the psycho-social impact of elder mistreatment on the health and well-being of older people

Objectives: Elder abuse and neglect is an increasing concern that adversely affects the health and well-being of older people in most societies. The purpose of this paper is to describe the psycho-social impact of elder mistreatment on the health and well-being of older Korean people living in New Zealand.

Method: Data were collected from in-depth interviews. The lived experiences of elder abuse and neglect were studied with 10 older people who were, or who had been, mistreated in their family context. To analyse the data collected, a combined analysis approach was employed using traditional code-based techniques and a concept-mapping method.

Results: The findings of the study show that the effects of elder mistreatment were complex and multidimensional. The older persons who were mistreated in family settings experienced a range of emotional, psychological distress and physical symptoms. Many of them identified ‘Hwa-byung’ (literally anger disease) as a health issue associated with suppressed emotions of anger, demoralisation, heat sensation and other somatised symptoms.

Conclusion: Elder abuse and neglect is a traumatic life event that has considerable psycho-social impacts on older people experiencing the problem. It is important to recognise the power of multidimensional challenges caused by elder mistreatment in health and well-being.     

Perception of patients’ unpredictability and beliefs on the causes and consequences of schizophrenia

Abstract.Background: The belief that mental disorders involve a high risk of unpredictable behaviours is a factor which influences negatively the social acceptance of the mentally ill. In this paper, we compare the beliefs about the causes and psychosocial consequences of schizophrenia expressed by 536 respondents who had the firm conviction that patients with schizophrenia are unpredictable and by 457 respondents who firmly believed that they are not.Methods: The survey was conducted in 30 Italian geographic areas, randomly selected taking into account their location and population density. The data were collected by the Questionnaire about Opinions on Mental Illness (QO).Results: Respondents who believed that patients with schizophrenia are unpredictable reported more frequently factors such as use of alcohol and drugs and frequenting bad company as being involved in the development of the disorder. In addition, this group showed more restrictive opinions about patients civil and affective rights. Low education was found to be significantly associated with perception of unpredictability in schizophrenia.Conclusions: These results suggest the need to: a) inform the general public on the main clinical characteristics of schizophrenia and on the risk of unpredictable behaviours in the acute phases of this mental disorder; b) carry out sensitisation campaigns against discrimination toward people with schizophrenia emphasising successful experiences of social integration.     

Short-term Effects of the ‘Rubber Hand’ Illusion on Aspects of Visual Neglect

The ‘rubber hand’ illusion was induced in a patient showing unilateral visual neglect, with the patient experiencing a shift in the felt position of his right hand towards a contralesional rubber hand. Immediately following the illusion, there were short-lasting reductions in neglect for bisecting about the midline and for cancelling multiple stimuli. No effects were found on the ability to encode briefly presented visual stimuli on the contralesional side. The data demonstrate that the illusion can temporarily alter some aspects of neglect, without altering basic visual encoding. The underlying mechanisms, and the relations to other rehabilitation procedures, are discussed.     

Dose-related biphasic effect of the Parkinson’s disease neurotoxin MPTP,on the spread,accumulation, and toxicity of α-synuclein

BackgroundParkinson’s disease (PD), the second most common progressive neurodegenerative disorder, is characterized by the abnormal accumulation of intraneuronal inclusions enriched in aggregated α-synuclein (α-syn), known as Lewy bodies (LBs) and Lewy neurites (LNs), and significant loss of dopaminergic (DA) neurons in the substantia nigra pars compacta (SNpc) of the brain. Recent evidence suggests that the intrastriatal inoculation of α-syn preformed fibrils (PFF) in mice brain triggers endogenous α-syn in interconnected brain regions. 1-methyl, 4-phenyl, 1,2,3,6 tetrahydropyridine (MPTP), a mitochondrial neurotoxin, has been used previously to generate a PD mouse model. However, the common methods of MPTP exposure do not induce LB or α-syn aggregation in mice. In the present study, we evaluated the effect of different doses of MPTP (10 mg/kg.b.wt and/or 25 mg/kg.b.wt) on the spread, accumulation, and toxicity of endogenous α-syn in mice administered an intrastriatal injection of human α-syn PFF.MethodsWe inoculated human WT α-syn PFF in mouse striatum. At 6 weeks post PFF injection, we challenged the animal with two different doses of MPTP (10 mg/kg.b.wt and 25 mg/kg.b.wt) once daily for five consecutive days. At 2 weeks from the start of the MPTP regimen, we collected the mice brain and performed immunohistochemical analysis, and Rotarod test to assess motor coordination and muscle strength before and after MPTP injection.ResultsA single injection of human WT α-syn PFF in the mice striatum induced the propagation of α-syn, occurring as phosphorylated α-synuclein (pS129), towards the SNpc, within a very short time. Injection of a low dose of MPTP (10 mg/kg.b.wt) at 6 weeks post α-syn PFF inoculation further enhanced the spread, whereas a high dose of MPTP (25 mg/kg.b.wt.) reduced the spread. Majority of the accumulated α-syn were proteinase K resistant, as recognized using a conformation-specific α-syn antibody. Injection of α-syn PFF alone caused 12 % reduction in the number of tyrosine hydroxylase positive neurons while α-syn PFF + a low dose of MPTP caused 33 % reduction (loss), compared to the control mice injected with saline. This combination also reduced the motor coordination. Interestingly, a low dose of MPTP alone did not cause any significant reduction in the number of tyrosine hydroxylase positive neurons compared to saline treatment. Animals that received α-syn PFF and a high dose of MPTP showed massive activation of glial cells and decreased spread of α-syn, majority of which were detected in the nucleus.ConclusionOur results suggest that a combination of human WT α-syn PFF and a low dose of MPTP increases the pathological conversion and propagation of endogenous α-syn, and neurodegeneration, within a very short time. Our model can be used to study the mechanisms of α-syn propagation and screen for potential drugs against PD.     

Comparative microanatomy of the lateral wall of the ‘cavernous sinus’ in humans and the olive baboon

Abstract

Despite many studies of the ‘cavernous sinus’ lateral wall, the anatomy of this area remains controversial. We performed a comparative microanatomical and histoarchitectural study in 14 humans and in 10 nonhuman primates (Papio cynocephalus anubis). Venous channels and cranial nerves were embedded in the ‘interperiosteodural space’. The dura propria of the lateral wall could be removed without entering the venous compartment. The oculomotor and trochlear nerves were accompanIed by an arachnoidal and dural sheath. The oculomotor nerVe sheath stopped under the anterior clinoid process in baboons. The trigeminal ganglion was covered posteriorly with an arachnoid membrane and adhered firmly to the dura propria on lateral aOnd anterior sections. The three branches of the trigeminal nerve had no arachnoid covering, except for arachnoid granulations in humans. In baboons, the oculomotor and trochlear nerves were thicker than in humans, while the ophthalmic nerve was thinner. The abducens nerve belonged to the lateral wall of the sinus in baboons and had no arachnoidal sheath except in the first millimeters of Dorello’s canal. After leaving their arachnoidal and dural sheath, the intracavernous cranial nerves acquired a typical peripheral sheath. The venous channels in both species’ were true dural sinuses. Willis cords and adipose tissue were identified. [Neural Res 1997; 19: 571-576]     

What Influences the Beliefs, Behaviours and Consumption Patterns of ‘Moderate Risk’ Gamblers?

Gambling is emerging as a significant health issue. Problem gambling does not develop instantaneously and is often the result of risky consumption patterns over a period of time. Early intervention strategies depend on a detailed understanding of ‘at risk’ gamblers, yet surprisingly little is known about this group. This qualitative study explores the beliefs, behaviours, risk perceptions, and consumption patterns of 35 individuals who were screened as having ‘moderate risk’ gambling behaviours. Two thirds of participants gambled at least once a week and most consumed multiple types of gambling products. Participants gambled for social or emotional reasons, with many using gambling as a mechanism to socially connect and interact with others. Perceptions of behavioural control led many to believe that they were not at risk or could control gambling risks. Understanding the range of drivers that influence gambling risk is essential in developing prevention and harm minimisation strategies.     

Predicting the psychosocial outcome of epilepsy surgery: A longitudinal perspective on the ‘burden of normality’

Good seizure outcomes and good psychosocial outcomes following epilepsy surgery do not necessarily follow one from the other. This study explored the relationship between several presurgical psychosocial characteristics and postsurgical quality-of-life outcomes. The study aimed to develop the concept of ‘the burden of normality’ and identify risk factors for a poor psychosocial outcome that could be targeted with ameliorative presurgery cognitive behavioral techniques. Data were collected from 77 epilepsy surgery patients from three UK epilepsy centers and presurgery and postsurgery follow-up data were obtained from 30–34 patients, depending on the measure. Measures were self-report. Postsurgery intervals were determined by the epilepsy surgery care pathway at individual centers. Presurgery poor levels of mental health, poor social functioning, increased belief in illness chronicity, and associating epilepsy with social role limitations were all associated with poor postsurgical quality of life. Adopting an accepting coping strategy presurgery was associated with good postoperative quality of life. Regression analysis showed that a good postsurgical quality of life was positively predicted by a presurgical coping style of being able to make the best of a situation and see challenges in a positive light (i.e., positive reinterpretation and growth from the COPE scale) and negatively predicted by presurgical levels of anxiety. These data are presented as an important step in identifying psychological red flags for an adverse psychosocial outcome to epilepsy surgery, as exemplified by the concept of the ‘burden of normality’ and specifying targets for preoperative ameliorative psychological advice.     

Importance of ‘inflammatory molecules’, but not necessarily of inflammation,in the pathophysiology of bipolar disorder and in the mechanisms of action of anti-bipolar drugs

It is often supposed that inflammation plays a major role in the pathophysiology of bipolar disorder and that reduction of inflammation by the classical anti-bipolar drugs, the lithium ion (lithium), carbamazepine and valproic acid, partly explain their therapeutic effect. The present mini-review summarizes data for enhanced expression in bipolar patients of ‘inflammatory molecules’, i.e., cytokines and metabolites of arachidonic acid (e.g., prostaglandins) and the enzymes (e.g., COX2) that catalyze this metabolism. However, it points out that enhanced transmitter activity during manic phases may play a major part in this upregulation. It also shows that chronic treatment with any of the 3 anti-bipolar drugs, known to decrease expression of the enzyme that releases arachidonic acid (cPLA₂) in whole brain, has this effect only in neurons, whereas it upregulates cPLA₂ expression in astrocytes. Literature data are presented that this upregulation may have therapeutically beneficial effects in bipolar disorder, supporting increasing evidence for involvement of not only neurons but also astrocytes in bipolar disorder and anti-bipolar drug action.     

Influence of neurotoxins and oxidative stress on the onset and progression of Parkinson’s disease

It is generally accepted that progressive, irreversible and regionally specific neurodegeneration and the presence of Lewy bodies are the essential pathological hallmarks of idiopathic parkinsonism. The causes of these phenomena, however, remain to be elucidated. One of the leading hypotheses is that oxidative stress induced by reactive oxygen species (ROS), such as the hydroxyl radical, damages essential components of the neuron, resulting ultimately in cell death. Observations in the parkinsonian brain at post-mortem support this hypothesis; for example, widespread oxidative protein modification is evident. There are several potential sources of increased oxidative stress in Parkinson’s disease, including mitochondrial dysfunction, increased free iron levels and impaired free radical defence mechanisms. Further, it is possible that glial, rather than neuronal, elements are primarily responsible for the initial increase in oxidative stress in the substantia nigra. It is likely that parkinsonism is the result of aberrations at multiple levels of neuronal function. Oxidative stress is no doubt one of the events involved in neurodegeneration, but is unlikely to be the initiating event. It is to be expected that the search for this event will continue for many years.

     

The effects of 2,3,7,8-tetrachlorodibenzo-p-dioxin on the development and function of the blood–brain barrier

Prenatal exposure to environmental chemicals such as dioxins is known to have adverse effects on the developing central nervous system (CNS) in mammals. Because the fetal blood–brain barrier (BBB) is immature, dioxins are thought to exert their toxic effects on the CNS by crossing the BBB and acting on neural cells directly. However, little is known whether dioxins alter the BBB. In this study, to investigate the effects of dioxins on BBB function, we exposed an in vitro BBB system comprising rat endothelial cells, astrocytes, and pericytes to the toxicant 2,3,7,8-tetrachlorodibenzo-p-dioxin (TCDD) either before or after BBB formation. We assessed BBB permeability and the function of tight junctions by measuring transendothelial electric resistance (TEER) values following exposure. Subsequently, total RNA and proteins were obtained from the cells for analysis. TEER values following TCDD exposure before but not after BBB formation were lower than those of the control group. We also observed that the expression of the tight junction proteins ZO-1 and claudin-5 was suppressed following TCDD exposure. To examine the cause of this reduction in protein levels, we performed a real-time quantitative polymerase chain reaction assay and observed low expression of the glial cell line-derived neurotrophic factor (GDNF) mRNA in the exposed groups. Moreover, to rescue the effects of TCDD, we applied extrinsic GDNF with TCDD. The several disruptions caused by TCDD were rescued by the GDNF addition. Our findings suggest that exposure to TCDD during BBB formation disrupts and impairs BBB function in part by the suppression of GDNF action, which may contribute to the adverse effects of TCDD on the fetal CNS.     

The Impact of ‘Being There’: Psychiatric Staff Attitudes on the Use of Restraint

The practice of mechanically restraining psychiatric patients is constantly under debate, and staff attitudes are considered a central factor influencing restraining practices. The aim of this study was to explore associations between psychiatric staff members’ presence and participation in incidences of restraint and attitudes towards mechanical restraints. Methods: Staff members (psychiatrists, nurses, paramedical staff; N = 143 working in a government psychiatric hospital in Israel) completed a questionnaire including personal information, participation in incidents of restraint and attitudes towards mechanical restraints. Items were categorized into the following categories: security and care; humiliation and offending; control; order; education and punishment. Results: Compared to those who were not present during restraint, staff members who were present agreed significantly less with statements indicating that restraints are humiliating and offending and agreed more with statements indicating that restraints are used primarily for security and care (p < .05). Among those present in incidences of restraint, staff members who physically participated in restraint agreed significantly more with statements indicating that restraints are a means for security, care and order, and less with statements indicating restraints are humiliating and offending, compared to those present but not physically participating in restraint (p < .05). Conclusions: These findings highlight the importance of proximity of staff members to incidences of restraints. This may have implications in understanding the professional and social discourse concerning mechanical restraints.