TRYING TO STOP A BLOODY BUSINESS: THE EU´S POLICIES TO CURTAIL THE TRADE IN NATURAL RESOURCES THAT FUND ARMED CONFLICTS

In several of the world’s armed conflicts, natural resources are an important source of income for the warring parties. Cutting this stream of revenues has therefore also become an objective of conflict prevention and –management policies of the European Union (EU). However, in contrast to its usual more multilateral leanings the EU is using in this issue field predominantly unilateral measures. The article therefore seeks to explain this policy choice. By borrowing the Global Production Network (GPN)-conceptualisation from the field of the Economic Geography, the article illustrates how the global context in which the EU acts is becoming increasingly adverse for global measures. Many state actors are hesitant to commit themselves to binding, automatic measures regarding the trade in natural resources. Likewise, European companies, NGOs and consumers are losing leverage on the GPNs of many products that potentially use conflict-financing commodities. This situation decreases the EU’s indirect “market power”. As a result of these developments, the only left policy option for the EU to curb the trade in these conflict resources is imposing unilateral measures. This situation, however, creates certain tensions with its self-image as promoter of “effective multilateralism” in the world

The efforts of direct support professionals to facilitate inclusion:The role of psychological determinants and work setting

BackgroundVarious studies have found that direct support professionals (DSPs) play an important role in determining the degree to which people with intellectual disabilities (ID) are included in society. However, less research has been conducted on the psychological processes that may influence the behavioural intentions of DSPs to actually engage with and invest effort in supporting their clients' inclusion. Five possible psychological variables are identified in the literature: attitudes, social norms, experienced competencies, identity and meta‐evaluation. In our research, we tested whether these processes influence the (intended) efforts DSPs make to facilitate their clients' inclusion.MethodA structured questionnaire was sent to 927 DSPs working in one of three different locations (an ordinary non‐segregated setting, a reversed non‐segregated setting and a residential facility). Of these, 336 DSPs completed the questionnaire.ResultsSeveral variables revealed differences between the three locations, specifically in efforts to facilitate inclusion, attitudes, social norms, experienced competencies and professional identity. Looking at the overall means, we found (relatively) high scores for the experienced competencies, role identity and meta‐evaluation. In contrast, the means were relatively negative regarding the DSPs' attitudes to inclusion and their assumed social norms.ConclusionsDirect support professionals' efforts to facilitate inclusion depend on their attitude towards inclusion, the experienced competencies, their role identity, the DSPs' meta‐evaluation and, indirectly through attitudes, also on the assumed social norms of the relevant stakeholders. Organizations responsible for supporting people with ID and which may want their DSPs to make greater efforts to facilitate inclusion should pay attention to these psychological variables

Exploring spontaneous interactions between people with profound intellectual and multiple disabilities and their peers

Background Peers living in the same group form important interaction partners for people with profound intellectual and multiple disabilities (PIMD). Given the severity of their disabilities, direct support persons (DSPs) play a significant role in facilitating interactions between these peers. This study explores the spontaneous interactions between persons with PIMD and the possibilities provided by DSPs related to physical positioning. Method Observational data were obtained from 14 people with PIMD for three consecutive hours in a non-controlled situation. Results Of all 213 observed interactions, 5.1% were with peers, 73.4% with DSPs, 14.9% with the observer, and 6.5% with others. In 61.3% of the observed timeframes, the participants with PIMD were positioned in a way that made it impossible to touch or/and to look at a peer. Conclusion Generally, the observed positioning of the participants made contacts between peers nearly impossible. DSPs should create optimal conditions for interaction between peers

Risk factors associated with challenging behaviour in people with profound intellectual and multiple disabilities

BACKGROUND: Several factors that correlate with the onset or continuation of challenging behaviour are mentioned in research. These are factors related to persons with ID, but also to direct support professionals and the context. Although many of these factors seem to affect the onset or continuation of challenging behaviour in people with ID in general, results are often inconclusive and have little focus on people with profound intellectual and multiple disabilities (PIMD). The present study aimed to assess the extent to which known factors related to challenging behaviour are also applicable to a group of 198 people with PIMD. METHOD: To determine which factors were associated with challenging behaviour, univariate analyses on associations between known risk factors and challenging behaviour were conducted. The associated factors were then subject to a regression analysis to determine the extent to which they explain the prevalence of challenging behaviour and can thus be seen as factors associated with challenging behaviour. RESULTS: The results show that, in particular, factors concerning the personal characteristics of people with PIMD, such as sleeping problems and auditory problems, were related to the variance in mean frequency of challenging behaviour. Only one factor related to the direct support professionals was found: when these professionals had been offered training on the subject of challenging behaviour in people with intellectual disabilities in general, they identified significantly more withdrawn behaviour. We found no contextual factors related to challenging behaviour. CONCLUSION: These findings are generally consistent with findings reported in other studies, especially concerning the personal characteristics of people with PIMD. Further research should focus on the effects of providing safe auditory environments and appropriate sleep schedules for people with PIMD on the occurrence of challenging behaviour

The relationship between soundscapes and challenging behavior:A small-scale intervention study in a healthcare organization for individuals with severe or profound intellectual disabilities

This article evaluates the role of soundscapes in the emotional well-being of individuals with severe or profound intellectual disabilities. Given the high prevalence of visual disabilities in this group, they supposedly depend more on sound to understand their surroundings. Nevertheless, there is little attention for (the effects of) sound in long-term healthcare. To address this issue, we conducted a small-scale intervention study among 13 healthcare professionals with Mobile Soundscape Appraisal and Recording Technology (MoSART: a smartphone application). Pre- and post-test measurements were administered of the emotional well-being (measured as moods and challenging behavior) of 15 clients with intellectual disabilities. Results showed that the MoSART intervention was accompanied by an increased experience of vibrant soundscapes and audibility of human sounds as perceived by the professionals, and a significant decrease of negative moods and severity of stereotypical behavior in the clients

Individuals with Profound Intellectual and Multiple Disabilities at Work?! Activities in Special Day Service Centers in Germany

All individuals have the right to participate in activities. Therefore, productive work or other meaningful activities can promote the individuals' quality of life. While realizing work related activities for individuals with profound intellectual and multiple disabilities (PIMD) is an issue in clinical practice in general, special day service centers in Germany intend to provide work related activities for all individuals of the target group. The aim of the present study was to analyze the activities of all special day service centers in a northern urban region of Germany, in order to describe to what extent such activities could promote the work related quality of life of the individuals with PIMD. Four special day service centers participated in the present study. Data were collected in a diary for one individual with PIMD per group (n = 30). Goals and content were analyzed focusing on the relation with a work related quality of the life model (operationalized as interaction, experience of competences, and self‐determination). The results show that communication and self‐efficacy (as parts of interaction and experience of competences) are often goal and/or content of the presented activities. Stimulation of self‐determination was rarely ticked as a goal. The most important conclusion of the present study is that participation in work related activities of individuals with PIMD is possible. Including elements such as communication, motor activation, and experience of self‐efficacy, the activities can be described as activities promoting the quality of life in individuals with PIMD. Still, different types of special day service centers are needed. Focusing on either work related activities, education, and/or leisure activities accounts for the different needs of individuals with PIMD according to their different characteristics and different phases of life

Copy number variation in a hospital-based cohort of children with epilepsy

Objective: To evaluate the diagnostic yield of microarray analysis in a hospital-based cohort of children with seizures and to identify novel candidate genes and susceptibility loci for epilepsy. Methods: Of all children who presented with their first seizure in the University Medical Center Groningen (January 2000 through May 2013) (n = 1,368), we included 226 (17%) children who underwent microarray analysis before June 2014. All 226 children had a definite diagnosis of epilepsy. All their copy number variants (CNVs) on chromosomes 1-22 and X that contain protein-coding genes and have a prevalence of <1% in healthy controls were evaluated for their pathogenicity. Results: Children selected for microarray analysis more often had developmental problems (82% vs. 25%, p < 0.001), facial dysmorphisms (49% vs. 8%, p < 0.001), or behavioral problems (41% vs. 13%, p < 0.001) than children who were not selected. We found known clinically relevant CNVs for epilepsy in 24 of the 226 children (11%). Seventeen of these 24 children had been diagnosed with symptomatic focal epilepsy not otherwise specified (71%) and five with West syndrome (21%). Of these 24 children, many had developmental problems (100%), behavioral problems (54%) or facial dysmorphisms (46%). We further identified five novel CNVs comprising four potential candidate genes for epilepsy:MYT1L, UNC5D, SCN4B,andNRXN3. Significance: The 11% yield in our hospital-based cohort underscores the importance of microarray analysis in diagnostic evaluation of children with epilepsy

Changes in empowerment and anxiety of patients and parents during genetic counselling for epilepsy

Genetic testing and counselling are increasingly important in epilepsy care, aiming at finding a diagnosis, understanding aetiology and improving treatment and outcome. The psychological impact of genetic counselling from patients' or parents & rsquo; perspectives is, however, unknown. We studied the counseleereported outcome of genetic counselling before and after genetic testing for epilepsy by evaluating empowerment - a key outcome goal of counselling reflecting cognitive, decisional and behavioural control, emotional regulation and hope - and anxiety. We asked patients or their parents (for those (c) 2021 The Author(s). Published by Elsevier Ltd on behalf of European Paediatric Neurology Society. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/)

Looking back, looking forward: Methodological challenges and future directions in research on persons with profound intellectual and multiple disabilities

Within the context of the Special Interest Research Group (SIRG) on Persons with Profound Intellectual and Multiple Disabilities (PIMD), researchers often discuss the methodological problems and challenges they are confronted with. The aim of the current article was to give an overview of these challenges. The challenges are centred on six topics. These reflect the main components of a study's design: (a) participant demarcation, (b) participant recruitment, (c) data collection and instruments, (d) data analysis, (e) ethics/including the “voice” of persons with PIMD and (f) theoretical models. Next, to describing the specific challenges, possible solutions and pathways to address them are discussed. These are illustrated by recent studies by the authors and other researchers in the field. The current contribution wants to stimulate further discussion and ex-change of ideas, and the development of creative research techniques