搜索结果：Journal of intellectual disability research : JIDR

The topics of research papers published in JIDR are diverse. This is largely because the focus of JIDR is on a particular group of people rather than specific types of illnesses, as is the case with purely medical journals, or on research within one academic discipline. In contrast to what is the case for many academic journals JIDR deliberately sets out to publish peer-reviewed findings from across a range of disciplines addressing, many and varied topics relevant to people with intellectual disabilities (ID). We do this through the general editions of the Journal, the specialist mental health editions, and the special editions with invited editors. The wide diversity of research that characterises the field of ID was well-illustrated at the recent 3rd European IASSID conference held in Rome in October 2010. There were eleven themes, ranging from ageing to quality of life, from the biological and bio-behavioural, to education, empowerment, families and ethics and many more (see JARID 2010; 23, volume 5 for abstracts). As an individual the dilemma at such meetings is which sessions of the various parallel themes to attend – those areas of scientific endeavour that are familiar or, instead, whether to step into unknown territory. The tension is keeping up-to-date in one's own fields of research, and, at the same time, engaging in other areas of potential relevance. Sometimes the greatest conceptual advances are made by making connections between different research perspectives, identifying new technologies not previously considered, comparing disparate ideas or using novel approaches to address well-recognised problems. If those of us working in the field don't step beyond our comfort zone in this way, others outside of ID are certainly unlikely to. In many circumstances the complexity of research in ID requires interdisciplinary collaborations. At the IASSID conference there were informal discussions on familiar topics such as the balance of biological versus sociological research, on the role of user engagement in research, and applied versus fundamental research, and much more. Firm positions were held and, for some, compromise was not possible; for others, there was the recognition that different perspectives and more nuanced approaches were needed and were to be valued. However, despite some rigidities there is a strong sense that the field of ID has clearly moved forward with a willingness to embrace different theoretical perspectives as illustrated by the title of the conference –‘Integrating biomedical and psycho-social-educational perspectives’. With such complexity the challenge that we then face in ID is the integration of knowledge from disparate studies in a manner that advances our understanding and ultimately informs policy and practice. The transfer, evaluation, and use of knowledge from multiple sources to effect change is perhaps the greatest challenge of all. What then of the future? Research funding, not easy at the best of times, will undoubtedly become harder to obtain. ‘More is expected from less’ is the phrase increasingly used in these economically problematic times. Priority setting is therefore likely to be necessary, and there may be a focus on funding research that is thought likely to bring demonstrable cost benefits for the population as a whole. Such a focus may disadvantage minority groups, such as people with ID, and in particular, those sub-groups within ID, for example, people with specific syndromes or those with profound or multiple disabilities. At the same time, in ID we must maintain and grow what is a fragile research infrastructure and encourage the very best academics to be interested in this area of study. These are daunting tasks. In many countries there are committed and skilled interdisciplinary research groups that are active and publishing and also contributing directly to changing practice in their own countries and beyond. Certainly in the UK research funding tends to be increasingly concentrated around such centres of expertise. Whilst there are benefits to such an approach, research in ID is often only possible if strong partnerships between individuals and organisations are in place and research is seen clearly as an essential, valued, and respected activity. What then are the main challenges? First, as research funding becomes tighter it will be necessary to identify the main research priorities and also ensure the development and maintenance of the necessary academic and service partnerships that can support such research; and secondly, we must ensure that the new knowledge generated by research is disseminated and used. For many countries their research priorities are likely to include issues relating to demographic changes and the ageing populations of people with ID, and also the high costs of social support for some groups of people, especially those with additional challenging behaviours. Clear differences exist between countries in the way that health and social support services for people with ID are funded, structured, and managed – given this, how might services for people with ID be best designed? How should the skills of the workforce be maintained, and can we marry positive policy aspirations and the wishes and aspirations of individuals with ID and that of their families with the realities of the economic and welfare climate? What are the ‘value added improvements’ that flow from this new knowledge and its application in practice? The discipline of health economics is here to stay! Given this likely emphasis on applied research, how can we be sure that advances in fundamental research within ID are maintained? Here again the case for interdisciplinary research studies is very strong. For all of us working in the field we need to be clear as to what problems are potentially tractable given the research methodologies and technologies that exist, and those that may be intractable at this point in time. In this regard decisions about research priorities should not rest with any one group of people, rather research ideas should emerge from discussions about the priority issues and what is possible and requires a research approach. Not everything does and much may already be known but not understood or not applied! Knowledge transfer was the focus of two workshops at the IASSID meeting in Rome facilitated by Ivan Brown. The presentations and discussions in these workshops highlighted the major challenges that exist, particularly because of the complexity and interdisciplinary nature of the field. How is new knowledge transmitted, interpreted, and used both within the research community and beyond? How can there be some degree of shared understanding across the different groups? We need to ensure that the research itself is robust and soundly based in established and accepted theory. We should encourage conceptual, policy, and briefing papers that integrate relevant bodies of knowledge applied to a specific topic. Conceptual papers may include philosophical and legal analyses, sociological and biological perspectives, and psychological and developmental theories. Policy papers should seek to interpret research findings, drawing out the implications for commissioners and providers of services. In this regard, with every research project, we need to be much more aware who the audiences for the findings will be. Are they clinicians, commissioners of services, people with ID and their families, politicians and policy advisors, researchers, support organisations, and/or support workers etc? In the case of clinical studies, initial fundamental research may lead to applied research which in turn results in the identification of new interventions and the development of best practice guidance by professional bodies. Selected examples of such reports include: Dementia and people with learning disabilities, 2009, Best Practice guidance developed jointly by the Royal College of Psychiatrists and the British Psychological Society; Consensus guidelines into the management of epilepsy in adults with ID by Kerr et al.; (JIDR 2009; 53: 687–694); and Raising our sights: services for people with profound intellectual and multiple disabilities, Mansell, J., 2010, Department of Health. These reports have been informed by research, some are interdisciplinary and international, but all include the considered opinions of acknowledged experts who have the skill to distill and integrate findings. Finally, from a very different perspective, it is instructive to reflect on how the tragic and likely premature deaths of six people with ID in the UK reported by the UK Charity ‘Mencap’ (see Death by Indifference, Mencap 2008; Healthcare for All an independent Report by Sir Jonathan Michael, 2008; and Six lives: the provision of public services to people with learning disabilities, the results of an investigation by the Parliamentary and Health Service Ombudsman, HC 203-1, 2009) was able to mobilise a powerful response from Government. A specialist ID Health Observatory has been established and a confidential enquiry into avoidable and premature deaths of people with ID is underway – both funded by the Department of Health for England. The issue of the health inequalities of people with ID had, however, previously been established (as summarised in the subsequent Michael's Report) but this Mencap report was able to bring to everyone's attention certain issues that no amount of research published in peer review journals had been able to. What the media and Government choose to select for attention is not easy to predict but national and international scientific bodies will need to become more aware of such issues and learn from strong third sector organisations. The message for the future is to build on the inter-agency and interdisciplinary networks and expertise that exist, to be willing to explore new ideas and research technologies developed elsewhere and to bring them into this field, and to be clear how new knowledge derived through research is targeted and is to be integrated with existing knowledge in a manner that advances understanding and may lead to informed change in policy and practice. To end, I would like to thank the editorials assistants, Sue Hampton Matthews and Lorna Rouse; my editorial colleagues, Anna Cooper, Chris Oliver and Jan Blacher; Shoumitro Deb and Kathy Lowe, book editors; and Alison Gridley and Qingwen Li, from Wiley Blackwell for all of their support and thank you, the readership, for submitting papers, and for subscribing to, and reading JIDR. Best wishes for 2011.

It is approaching 50 years since the first empirical studies of self-injurious behaviour (SIB) in people with intellectual disability and autism spectrum disorder were conducted by Ivar Lovaas and colleagues (Lovaas et al. 1965; Lovaas & Simmons 1969). These early studies generated significant clinical and research interest as they demonstrated the potential for applied science, via the principles and methods of operant learning theory, to contribute to the understanding and reduction of one of the most distressing and intractable problems in the field of intellectual disability. As these principles and methods were translated into the technology of Applied Behaviour Analysis, different classes of reinforcement of self-injury were identified and the seminal reviews of the resultant research by Bachman (1972) and Carr (1977) began to shape the research agenda that is still evident today. The review by the late, and sorely missed, Ted Carr was influential in a number ways. First, it outlined a behavioural taxonomy based on the class of reinforcement and its social or sensory delivery. Second, the descriptions of the evidence, derived from manipulations of contingencies, provided the framework for experimental functional analytic assessment methods later developed by Iwata et al. (1982) and Carr & Durand (1985) amongst others. Third, Carr suggested the causes of self-injury might have an operant basis and/or a biological cause. In doing so he identified and tried to amalgamate the polarised positions adopted in the field. Carr did two other things that remain influential today. He promoted both psychological and biological research into the causes of self-injury and he made explicit the basis of a clinical assessment framework that encapsulated both individual characteristics and manipulation of environmental variables. In this special edition of JIDR we have brought together a series of empirical papers and reviews that cover the range of contemporary research on self-injury identified in Carr's review. By doing so, we can evaluate progress toward a more complete account of self-injury that might lead to an effective, comprehensive, data-driven clinical assessment. The need for research that spans environmental and biological variables is evident from a critical appraisal of whether operant learning can offer a complete account of SIB. There are a number of well established observations that are pertinent. The documented association between some genetic disorders and self-injury and the difference in forms of self-injury between syndromes (Arron et al. 2011) alludes to causal variables that are either not in the environment or are operant in nature but interact with aspects of the behavioural phenotype associated with a genetic syndrome (Langthorne & McGill 2008; Tunnicliffe & Oliver 2011). A similar argument may be made for the growing evidence that some psychological characteristics, such as repetitive behaviour, autism spectrum disorder and impulsivity are associated with self-injury and, in the case of repetitive behaviour, more severe self-injury (Arron et al. 2011; Oliver et al. in press). In this edition, Richards et al. (2012) extend these observations to show that ASD characteristics in those who have Fragile X or Down syndrome are associated with a higher prevalence of self-injury and that within the high-risk group of those with ASD, impulsivity is associated with self-injury. Clearly these findings suggest a complete account of self-injury should identify why these individual characteristics are observed in those showing the behaviour. The review by Biswas & Furniss (2012) in this edition updates the literature on these characteristics and highlights the implications for intervention. At about the time that Lovaas published the first operant accounts of self-injury in humans, early reports of self-injury in animals appeared. These reports described pharmacologically induced self-biting in rats and mice (Peters 1967; Genovese et al. 1969), and spontaneous self-biting in rhesus macaques that were raised in impoverished conditions (Harlow & Harlow 1962). Further investigations using these models have helped to reveal neurobiological abnormalities that may contribute to the aetiology of self-injury. For example, cortical lesions enhanced the ability of pemoline to induce stereotypy and self-biting behaviours in rats (Cromwell et al. 1999), demonstrating potential links between the pharmacological model and cortical dysfunction that is common in those with intellectual disability. Harlow's self-injurious monkeys exhibited profound levels of stereotypy during and after their social isolation (Harlow & Harlow 1962; Harlow et al. 1965), and it was eventually found that these animals had significant alterations in striatal chemoarchitecture (Martin et al. 1991). These effects of early impoverishment are redolent of effects in human children. When severely environmentally deprived children who were raised in Romanian orphanages were assessed in the 1990s, 47% were reported to engage in rhythmic stereotypy and 24% in SIB (Beckett et al. 2002). Indeed, there appears to be a high degree of co-morbidity between stereotypy and self-injury in people with intellectual disability (Gal et al. 2009; Oliver et al. in press), and abnormalities in striatal function are thought to be an important component in both behaviours (Turner & Lewis 2002). In this edition, Muehlmann & Lewis (2012) review the evidence for shared phenomenology and pathophysiology, drawing upon evidence from a combination of human conditions and animal models. Over the years, the biological basis of self-injury has been most extensively characterised in a neonatal 6-hydroxydopamine lesion model (Breese et al. 1984, 2005). Additional investigations have been reported with a variety of pharmacological manipulations including caffeine, pemoline, and Bay K 8644 administration (Devine 2011). Evidence is also building that specific transgenic manipulations may promote expression of spontaneous (Welch et al. 2007), or pharmacologically induced (Keebaugh et al. 2011) self-injury in laboratory mice. Taken together, these studies provide evidence that abnormal neurochemical signalling contributes to the pathophysiology of self-injury. Most investigations have focused upon striatal dysfunction, especially in dopaminergic neurotransmission. However, the specific neurochemical substrates are subject to ongoing investigation, and there is clearly a need for broader assessment of hormones, neurotransmitters, and cellular signalling mechanisms. In one recent study, it was reported that individual differences in stress responsiveness confer individual differences in vulnerability for pemoline-induced self-injury in outbred rats (Muehlmann et al. 2011). In this edition, these investigators extend those observations, and report that pre-exposure to social/emotional stressors enhances vulnerability for pharmacologically induced self-injury (Muehlmann et al. 2012). Taken together, the studies indicate important roles for stress-responses in the aetiology of SIB, and suggest that stressful situations should be explored further as potential establishing operations for expression of SIB. Evidence has also accumulated that SIB occurs in animals under a broad variety of conditions outside of the laboratory setting. This includes domestic pets (Jenkins 2001; Schwartz 2003), farm animals (Dodman et al. 1994) and zoo specimens (Novak et al. 2002). Self-injury was even reported in the case of a wild Gombe chimpanzee during a period of severe distress (Goodall 1986) (although it should be noted that self-injury appears to be uncommon in wild animals; Dellinger-Ness & Handler 2006). These observations suggest that the propensity to self-injure is broadly present in vertebrate species. Thus, animal models of self-injury appear to represent neurobiological perturbations that contribute to vulnerability for self-injury, or they imbue setting conditions that may promote the ongoing expression of SIB. Overall, these models share interesting parallels with self-injury in human disorders. An important challenge for future investigations is to identify the ways in which biological predispositions and environmental stimuli interact to contribute to the aetiology and expression of self-injury in animal models of this debilitating behaviour. The work by Courtemanche et al. (2012) and Peebles et al. (2012) highlights a bio-behavioural focus on the potential role for pain and pain perception in emerging models of self-injury informed from the ‘bench’ as well as by practice. Under normal circumstances pain is protective, it is the body's signal that something is wrong, and can be related to acute or chronic medical conditions. It has been recognised for some time that undiagnosed medical conditions that could be expected to be painful co-vary with SIB (see an early paper on this by Bosch et al. 1997 as well as a review by Kennedy & O'Reilly 2006). What is less clear is whether the neurobiological mechanisms regulating nociception may be ‘co-opted’ by the repeated tissue damage associated with chronic SIB. From this perspective, it may be relevant to consider more directly the physiological sensory mechanisms relevant to pain (and possibly itch) transmission and regulation in relation to chronic SIB (see Edelson 1984, for an earlier account). Consider, for example, that peripheral nerve damage secondary to viral infection (e.g. post-herpetic neuralgia) can lead to neuropathic itch (so severe, in some cases that affected individuals scratch to the bone and in a few notable case through bone as well) among otherwise healthy individuals with no psychiatric history (Oaklander et al. 2002). Histological evidence from skin samples implicates abnormal peripheral innervation of primary sensory afferents. Preclinical rodent models, developed to examine putative central nociceptive mechanisms underlying pathological itch/self-injurious scratch, also implicate abnormal innervation as well as local and central immune response (Brewer et al. 2008). Such findings underscore recent observations in skin biopsies taken from small samples of individuals with chronic SIB and intellectual disability showing altered peripheral epidermal innervation densities and corresponding elevations in concentrations of substance P (SP) in the skin of individuals with SIB, sampled from non-self-injurious body sites (Symons 2011). Intriguingly, in many samples, extensive mast cell degranulation (consistent with immune mediated inflammatory response) was also observed. These findings point to the possible relevance for a ‘peripheral biomarker’ approach to improve our understanding of the pathophysiology associated with SIB, or more realistically SIB subtypes. However, the real value here would be in knowing whether the peripheral biomarkers were causally related to SIB and had any predictive value in understanding treatment response, either pharmacological or behavioural. The empirical evidence and critical reviews presented in this special edition clearly indicate the need for models of self-injury that can account for all established observations of influential psychological, environmental and biological variables. Hence, the need for a broad research agenda (and funding for that agenda) remains paramount. However, empirical studies are likely to be more productive if they are open to the methods and concepts of other perspectives. This is nicely demonstrated in this edition in the study by Courtemanche et al. (2012) which used lag sequential analysis, traditionally employed in operant research, to examine possible pain-related behaviour as a precursor to self-injury. Similarly, the innovative review by Peebles et al. (2012) indicates how pain perception might moderate the relationship between self-injury and social reinforcement. The future directions for research that are likely to improve assessment and intervention in clinical practice include a valid and reliable technology for pain assessment (both indicators of presence of pain and compromised pain perception), the effective delivery of applied behaviour analysis at the point of service access, and evaluation of person and environmental characteristics that might be translated into risk markers for the future development of clinically significant self-injury. These clinical directions should be informed by expanding basic research in the potential interactions between operant learning theory, psychological characteristics, and neurobiological mechanisms that encode the pathophysiological basis of syndromic and idiopathic self-injury. The greatest immediate challenge is to increase the availability of demonstrably effective intervention for self-injury shown to be socially reinforced and amenable to reduction using the methods of applied behaviour analysis. The inability of services to make these interventions routinely available and affordable or to make them available only to those with specific diagnoses, seems driven by a proclivity for the use of treatments for which there is little, if any, evidence combined with the lack of appropriately trained professionals. At the same time, we do not have a broad enough empirical base regarding implementation and adherence regarding the successful ‘uptake’ of effective interventions. Despite a few notable longer-term intervention studies (by Wacker and colleagues; e.g. Steege et al. 1989), most intervention studies are focussed on establishing efficacy or explicating a mechanism. These remain necessary agendas but so does work addressing family and related care systems in relation to ‘diffusion of innovation’ to increase our understanding of the variables related to successful intervention implementation that actually maintains and reduces the burden of self-injury. In this respect, the pervasive, enduring and widespread failure of clinical psychology training to lead on these issues is lamentable. The stark contrast between the mandatory requirement for training of clinical psychologists in cognitive behavioural methods and the neglect of applied behaviour analysis warrants action, not least because of the inadvertent bias toward training in interventions that exclude those with the most severe disability. By publishing this special edition we hope to reinvigorate interest in self-injury and promote research that can be translated into effective intervention. In this editorial we wanted to acknowledge the legacy of Ted Carr of promoting the systematic evaluation of the potential causes of this behaviour from different perspectives. It is this approach that will ultimately prove beneficial to those who show self-injury and those who are charged with responsibility for delivering effective interventions at the point of need.

Old ideas can sometimes use new buildings. New ideas must use old buildings. * Such is the gist of this Special Issue of JIDR on autism spectrum disorder (ASD), the first ever for the journal. In seeking papers that addressed the intersection of both ASD and intellectual disability (ID), we were struck by the importance of drawing together the best of both fields. We found that autism-specific instruments and traditional thinking were not always the most accurate for researching populations with ID. Similarly, traditional thinking about developmental constructs in ID, such as in the area of language, could not adequately describe the unique and often uneven profiles in autism. It is interesting that ID is a very common co-morbid disorder with ASD, yet the field over the last decade or two has paid little attention to this fact (Lecavalier, Snow & Norris, 2011), although the definition of ASD in DSM 5 (APA, 2013) may catalyse research in this area. We do know that in a sample of 13-year-old adolescents with ASD whose IQs fell across the spectrum, IQ did not serve as a protective factor for clinically significant behaviour problems or mental health disorders. Yet, same-aged individuals with ID had three times the risk of developing mental health disorders over typically developing adolescents (Baker & Blacher, 2015). While co-morbidity of ASD and ID does not characterise all of the papers in this Special Issue, as we had hoped, most of the papers do present either new ideas or utilise new approaches to the study of ASD. Thus, the papers accepted herein reflect three broad areas: 1) assessment, where the architecture of developmental theory holds up; 2) language, where researchers grapple with using traditional language approaches to study children with ASD and ID; and 3) social context, which in many ways is the ultimate landscape for studying children with this co-morbid disorder. We provide an overview of this Special Issue as follows. Broadening the assessment of ASD. With the now accepted increase in the prevalence of ASD, researchers and professionals are in need of better and briefer instruments for autism screening and assessment. The Bayley Scales of Infant Development have long been useful for cognitive and language assessment of young typically developing children before age 3; the instrument is well-known, psychometrically sound and requires training for its administration. In Assessment of cognition and language in the early diagnosis of autism spectrum disorder: Usefulness of the Bayley Scales of Infant and Toddler Development (3rd Ed.), Montserrat Torras-Mañá and colleagues evaluated the predictive validity of an earlier administered Bayley at age 4 for Spanish children who had a confirmed ASD diagnosis. At the other end of the developmental spectrum, the article by Charlotte Mutsaerts and colleagues, Screening for ASD in adults with ID: Moving toward a standard using the DiBAS-R and the ACL, indicated improved sensitivity and specificity using two screening instruments for more accurate assessment of autism in adults co-morbid with ID. Language processes and outcomes. Four papers in this Special Issue focus more specifically on aspects of language, an area of concern especially in early childhood for children with both ASD and ID. Assessing and understanding the language profiles of children with ASD – with or without ID – have long challenged researchers, and Alexandra Key and colleagues addressed these issues in Consonant differentiation mediates the discrepancy between nonverbal and verbal abilities in children with ASD. Two papers examined effects of early intervention on language outcomes. Lauren Hampton and Ann Kaiser reviewed literature in Early intervention effects on spoken-language outcomes for children with autism: A systematic review and meta-analysis, and suggest that more thorough reporting of critical variables affecting language intervention studies implemented by parents and/or therapists in ASD would better move the field forward. Veronica Rose and colleagues examined the language outcomes of a large cohort of children with ASD in community intervention, comparing definitions for ‘minimally verbal’ in The proportion of minimally verbal children with autism spectrum disorder in a community-based early intervention program. Finally, a more nuanced approach to the study of imitation in children with ASD is provided by Mikael Heimann and colleagues in Children with autism respond differently to spontaneous, elicited, and deferred imitation. Family and social context. In recognition of the growing literature pertaining to families of children and adults with ASD, the paper by Meghan Burke and Tamar Heller, Individual, parent, and social-environmental correlates of caregiving experiences among parents of adults with autism spectrum disorder, offers links between findings about the impact of adults with ASD and public policy. Importantly, the findings indicate that future planning for one's adult offspring is related to one's current caregiving satisfaction, which appears to be more influenced by the target adult's health and maladaptive behaviours than the ID. Liezl Schlebusch and colleagues provide a rich description of family routines in households with a young child with ASD in their paper, South African families raising children with autism spectrum disorder: Relationship between family routines, cognitive appraisal, and family quality of life. They found that the relationship between the family routines and family quality of life was partially accounted for by parent appraisal of the impact of the child with ASD. Two papers addressed issues of service delivery. Sandra Magaña and colleagues, in Functional severity and Latino ethnicity in specialty services for children with autism spectrum disorder, explored the issue of equity in service delivery. Using multivariate linear and logistic regression models, the authors determined from secondary analyses of a large national dataset that Latino children with severe limitations (ID) received fewer targeted autism services than white non-Latino children with similarly severe limitations. Azin Taheri and colleagues, in Examining the social participation of children with intellectual disabilities and autism spectrum disorder in relations to peers, considered the social context of peers and community activities in a large Canadian sample of children and youth who were typically developing (TD), or who had ID or ASD + ID. Although the youth with ID or ASD + ID had fewer opportunities for socialisation and fewer friends than the TD group, those with ASD + ID had significantly fewer school friends than did the ID group, suggesting that these children may be in the greatest need for school-based social skills intervention. All in all, this first ever issue of JIDR devoted to ASD and ID is but a beginning. We hope that it inspires more work in this area and more cross-fertilisation of researchers interested in both ID and ASD.

This is the last editorial I shall be writing as editor-in-chief of the Journal of Intellectual Disability Research (JIDR). In March 2013, I will be handing over to my successor after 10 years in the post. Over this time we have published over 1000 papers in a combination of general, mental health and special editions. The papers published have been diverse in content, reflecting the range of research and of the disciplines undertaking the research. Contributors and readership have become more international with downloads increasing substantially year on year. All of this is encouraging. What then for the future? From a publishing perspective there is the challenge of open access. Few can deny the importance of opening up readership and making the papers available to all, but how to fund this and to ensure that all those who wish to submit sound research have access to the funds to pay, if their paper is accepted? Can we be certain, for a journal such as JIDR, that this will not distort what is submitted and what is accepted? A second area is that of social media. Ten years ago papers were submitted by post and then mailed to referees. Now it is done electronically, yet much more than this is possible. Facebook and Twitter provide the opportunity to publicly comment on papers in a manner that, 10 years ago was only just becoming apparent. JIDR is an important journal in our field and it is consider very successful by our publishers and owners, yet within the academic publishing industry it is a small player, thereby making these changes a particular challenge. Editorial resources are limited for JIDR and the research assessment exercises in different countries throughout the world favour the higher impact journals. For future editors the challenge will be to find a place for JIDR within this changing landscape of academic publishing and at the same time to certainly maintain, and hopefully to further raise standards. JIDR is, of course, dependent on the quality and quantity of research in the field of intellectual disability (ID) being undertaken and on papers being submitted. Numbers of submissions have increased over the years and now approach the 300 mark over the year. With this increase the selection process is becoming tougher thereby further increasing the standard of the papers we publish. This is at a time when resources for research are diminishing, and getting grants, always a challenge, has become even harder. There is concern, certainly in the UK, about the future of academia in this field – are there new researchers entering the field? Yet the paradox is that there is also a sense of the great potential for research through new insights that have been gained in different academic disciplines with the use of new technologies that have, and are continuing to, become available. In addition, internationally there remains great diversity in the way that people with ID are supported and included within society. Political and cultural differences and influences on the relative extent of social inclusion or exclusion of people with ID in their society remain important topics for sociological and human rights research. In stark contrast, the papers we have published on the behavioural phenotypes associated with genetically determined neurodevelopmental syndromes reflect the increasing opportunities in the neurosciences and genetics. It is now becoming possible to investigate the links between identified genetic abnormalities to measures of brain dysfunction and then, in turn, to the impact of these on the complex developmental phenotype of a person with a given genetic syndrome associated with ID. With these developments, new more refined models of understanding will arise leading to novel and more effective interventions. For me, the excitement of this field of ID is how it can challenges us at so many different levels inviting basic and applied research that address problems, which may also be relevant across the whole of society. The post of Editor is not always easy but it is certainly a privilege. It provides the opportunity to, not only promote the findings of research, but also to shape the research agenda. In this task I have been greatly helped by my editorial colleagues. My thanks to Jan Blatcher, Anna Cooper and Chris Oliver; and those of you who have volunteered to edit the many special editions. I would also like to thank Alison Gridley, Qingwen Li and their colleagues from Wiley and, very importantly, Sue Hampton-Matthews, who has been the editorial assistant for JIDR throughout these 10 years and who has been central to the smooth running of the Journal. Thank you also for the many interesting papers you have submitted and to those of you who have reviewed them and my apologies to those whose papers I turned down. I am very grateful for your support to JIDR and my best wishes to those who are taking over.

BACKGROUND: Adults with intellectual and/or developmental disabilities are disproportionately excluded from participation in research, consequently increasing disparities experienced by this group. Gatekeepers, individuals who control access to research participation opportunities, may either support or pose a barrier to inclusion in research. We sought to understand how gatekeepers serve as supports and barriers to the participation of people with intellectual and/or developmental disabilities in research and the factors that may drive their actions. We also sought to identify approaches to interacting with gatekeepers that promoted the sharing of research participation opportunities. METHODS: We conducted a scoping review of manuscripts published between January 2009 and September 2024 describing gatekeeping during recruitment for adults with intellectual and/or developmental disabilities in social/behavioural research. We conducted content analysis of 22 manuscripts to identify 'gate opening' actions (actions that support research participation) and 'gate closing' actions (actions that pose a barrier to research participation) at the point of recruitment. We also identified approaches researchers took when interacting with gatekeepers to promote gate opening actions. RESULTS: Gatekeepers' attitudes (e.g., valuing research) and knowledge about prospective participants were associated with gate opening actions. Gatekeepers' attitudes of mistrust of researchers and/or research, deprioritisation of research and presumed incapacity of people with intellectual and/or developmental disabilities to consent to, participate in and/or benefit from research participation were associated with gate closing actions. Gatekeepers' lack of information (e.g., about research and prospective participants) was also associated with gate closing actions. Restrictive organisational policies and gatekeepers' lack of resources (e.g., time) were also associated with gate closing actions. Approaches for interacting with gatekeepers that may foster gate opening actions included: addressing gatekeeper concerns, educating gatekeepers about the benefits of research participation and developing relationships with gatekeepers. CONCLUSION: We identified several malleable factors that may drive gate opening and gate closing actions. Enhanced collaboration between researchers and gatekeepers may foster greater opportunities for individuals with intellectual and/or developmental disabilities to learn about research opportunities.

BACKGROUND: Stigma towards people with intellectual disability affects various aspects of their lives, including access to employment, housing, health and social care services. Furthermore, this stigma reduces their social opportunities and is even reflected in laws that diminish their autonomy. Due to the practical significance of this issue, the aim of this research is to explore for the first time the social stigma associated with intellectual disability in a representative sample of the Spanish population. METHOD: A cross-sectional quantitative descriptive study was conducted, involving a representative sample of the population (N = 2746). The study includes descriptive analyses and hierarchical regressions to examine various dimensions of stigma, such as attitudes, attributions, and intentions of social distance. RESULTS: Medium levels of stigma are found regarding attitudes and attributions towards people with intellectual disability, while levels are medium-low concerning the intention of social distance. The most reliable indicators of stigma across its various dimensions encompass attitudes, attributions, and the intention of social distance. Factors that contribute to lower stigma include knowing someone with an intellectual disability, being willing to discuss intellectual disability with an acquaintance who has it and having a progressive political ideology. People with intellectual disability show more negative attributions towards themselves. Living with a person with an intellectual disability is another predictor of more stigmatising attitudes, but less intention of social distance. Results are mixed regarding age, gender, and educational level. CONCLUSION: Combating the stigmatisation of people with intellectual disabilities must include comprehensive actions to address attitudes, attributions and behavioural intentions. Public policies, such as national campaigns and programmes, should include contact with and open conversations about intellectual disability, and sensitivity to sociodemographic variables.

Webology is an international peer-reviewed journal in English devoted to the field of the World Wide Web and serves as a forum for discussion and experimentation. It serves as a forum for new research in information dissemination and communication processes in general, and in the context of the World Wide Web in particular. This paper presents a Scientometric analysis of the Webology Journal. The paper analyses the pattern of growth of the research output published in the journal, pattern of authorship, author productivity, and subjects covered to the papers over the period (2013-2017). It is found that 62 papers were published during the period of study (2013-2017). The maximum numbers of articles were collaborative in nature. The subject concentration of the journal noted was Social Networking/Web 2.0/Library 2.0 and Scientometrics or Bibliometrics. Iranian researchers contributed the maximum number of articles (37.10%). The study applied standard formula and statistical tools to bring out the factual result.

This paper develops a multilayer network approach for exploring the evolution of scientific disciplines, using the case of economics before and after the 2008 global financial crisis as a large-scale empirical testing ground. The units of analysis are journals, linked by social and intellectual relationships. The analysis covers all journals indexed in EconLit across three years (2006, 2012 and 2019). In the most recent year (2019), the dataset includes 909 journals, over 30,000 editorial board members, more than 260,000 authors, 134,000 articles, and nearly 2 million cited references. For each period, we model journals as connected in a four-layer multiplex network: the social relationships are based on shared editors (interlocking editorship) and shared authors (interlocking authorship), while the intellectual ones are based on shared references (bibliographic coupling) and textual similarity between articles. These four layers are integrated using Similarity Network Fusion to produce unified similarity networks from which journal communities are identified. Comparing the field across the three periods reveals a high degree of structural continuity. Although research topics chang

Despite the rise in affordable eXtended Reality (XR) technologies, accessibility still remains a key concern, often excluding people with disabilities from accessing these immersive XR platforms. Consequently, there has been a notable surge in HCI research on creating accessible XR solutions (also known as, assistive XR). This increased focus in assistive XR research is also reflected in the number of research and innovative solutions submitted at the ACM Conference on Accessible Computing (ASSETS), with an aim to make XR experiences inclusive for disabled communities. However, till date, there is little to no work that provides a comprehensive overview of state-of-the-art research in assistive XR for disability at ACM ASSETS, a premier conference dedicated for research in HCI for people with disabilities. This study aims to fill this research gap by conducting a scoping review of literature delineating the key focus areas, research methods, statistical and temporal trends in XR research for disability at ACM ASSETS (2019-2023). From a pool of 1595 articles submitted to ASSETS, 26 articles are identified that specifically focus on XR research for disability. Through a detailed anal

Rankings of scholarly journals based on citation data are often met with skepticism by the scientific community. Part of the skepticism is due to disparity between the common perception of journals' prestige and their ranking based on citation counts. A more serious concern is the inappropriate use of journal rankings to evaluate the scientific influence of authors. This paper focuses on analysis of the table of cross-citations among a selection of Statistics journals. Data are collected from the Web of Science database published by Thomson Reuters. Our results suggest that modelling the exchange of citations between journals is useful to highlight the most prestigious journals, but also that journal citation data are characterized by considerable heterogeneity, which needs to be properly summarized. Inferential conclusions require care in order to avoid potential over-interpretation of insignificant differences between journal ratings. Comparison with published ratings of institutions from the UK's Research Assessment Exercise shows strong correlation at aggregate level between assessed research quality and journal citation `export scores' within the discipline of Statistics.

We compare the network of aggregated journal-journal citation relations provided by the Journal Citation Reports (JCR) 2012 of the Science and Social Science Citation Indexes (SCI and SSCI) with similar data based on Scopus 2012. First, global maps were developed for the two sets separately; sets of documents can then be compared using overlays to both maps. Using fuzzy-string matching and ISSN numbers, we were able to match 10,524 journal names between the two sets; that is, 96.4% of the 10,936 journals contained in JCR or 51.2% of the 20,554 journals covered by Scopus. Network analysis was then pursued on the set of journals shared between the two databases and the two sets of unique journals. Citations among the shared journals are more comprehensively covered in JCR than Scopus, so the network in JCR is denser and more connected than in Scopus. The ranking of shared journals in terms of indegree (that is, numbers of citing journals) or total citations is similar in both databases overall (Spearman's \r{ho} > 0.97), but some individual journals rank very differently. Journals that are unique to Scopus seem to be less important--they are citing shared journals rather than bein

Objectives: To examine the distribution, temporal associations, and age/sex-specific patterns of multiple long-term conditions (MLTCs) in adults with intellectual disability (ID). Study Design: Observational study using longitudinal healthcare data. Methods: Analysis of 18144 adults with ID (10168 males and 7976 females) identified in the Clinical Practice Research Datalink, linked to Hospital Episode Statistics Admitted Patient Care and Outpatient data (2000-2021). We used temporal analysis to establish directional associations among 40 long-term conditions, stratified by sex and age groups (under 45, 45-64, 65 and over). Results: The high prevalence of enduring mental illness across all age groups is an important finding unique to this population. In males, mental illness occurred along with upper gastrointestinal conditions (specifically reflux disorders), while in females, mental illness presented alongside reflux disorders, chronic pain, and endocrine conditions such as thyroid problems. Among young males with intellectual disability, the combination of cerebral palsy with dysphagia, epilepsy, chronic constipation, and chronic pneumonia represents a distinctive pattern. In tho

This scientometric study analyzes Avian Influenza research from 2014 to 2023 using bibliographic data from the Web of Science database. We examined publication trends, sources, authorship, collaborative networks, document types, and geographical distribution to gain insights into the global research landscape. Results reveal a steady increase in publications, with high contributions from Chinese and American institutions. Journals such as PLoS One and the Journal of Virology published the highest number of studies, indicating their influence in this field. The most prolific institutions include the Chinese Academy of Sciences and the University of Hong Kong, while the College of Veterinary Medicine at South China Agricultural University emerged as the most productive department. China and the USA lead in publication volume, though developed nations like the United Kingdom and Germany exhibit a higher rate of international collaboration. "Articles" are the most common document type, constituting 84.6% of the total, while "Reviews" account for 7.6%. This study provides a comprehensive view of global trends in Avian Influenza research, emphasizing the need for collaborative efforts ac

DESIDOC Journal of Library & Information Technology (DJLIT) formerly known as DESIDOC Bulletin of Information Technology is a peer-reviewed, open access, bimonthly journal. This paper presents a Scientometric analysis of the DESIDOC Journal. The paper analyses the pattern of growth of the research output published in the journal, pattern of authorship, author productivity, and, subjects covered to the papers over the period (2013-2017). It is found that 227 papers were published during the period of study (2001-2012). The maximum numbers of articles were collaborative in nature. The subject concentration of the journal noted is Scientometrics. The maximum numbers of articles (65%) have ranged their thought contents between 6 and 10 pages. The study applied standard formula and statistical tools to bring out the factual result.

The journal impact factor (JIF) is the average of the number of citations of the papers published in a journal, calculated according to a specific formula; it is extensively used for the evaluation of research and researchers. The method assumes that all papers in a journal have the same scientific merit, which is measured by the JIF of the publishing journal. This implies that the number of citations measures scientific merits but the JIF does not evaluate each individual paper by its own number of citations. Therefore, in the comparative evaluation of two papers, the use of the JIF implies a risk of failure, which occurs when a paper in the journal with the lower JIF is compared to another with fewer citations in the journal with the higher JIF. To quantify this risk of failure, this study calculates the failure probabilities, taking advantage of the lognormal distribution of citations. In two journals whose JIFs are ten-fold different, the failure probability is low. However, in most cases when two papers are compared, the JIFs of the journals are not so different. Then, the failure probability can be close to 0.5, which is equivalent to evaluating by coin flipping.

This study aims to present a scientometric analysis of the journal titled Cognition for a period of 20 years from 1999 to 2018. The present study was conducted with an aim to provide a summary of research activity in current journal and characterize its most aspects. The research coverage includes the year wise distribution of articles, authors, institutions, countries and citation analysis of the journal. The analysis showed that 2870 papers were published in journal of Cognition from 1999 to 2018. The study identified top 20 prolific authors, institutions and countries of the journal. Researchers from USA have been made the most percentage of contributions.

This special issue was co-ordinated by the Families Special Interest Research Group (SIRG) of the International Association for the Scientific Study of Intellectual Disability, and guest edited by us on behalf of that group. The special issue follows on from one published in May–June 2003 in JIDR, edited by Jan Blacher, Chris Hatton and Gwynnyth Llewellyn. In keeping with the previous Families SIRG special issue, the call for papers was very broad and there is no particular theme beyond the description of new quantitative or qualitative data on families of children or adults with intellectual disabilities (IDs). Thus, in the papers published here, we have a fascinating range of material with variation along a number of dimensions. First, there is variation in research method showing how different approaches can be used to study questions relevant to understanding and supporting families of people with IDs. There are two qualitative and 10 quantitative methods, several surveys and a study using secondary analysis of a large dataset. Second, there is variation according to the location of research teams indicating the health of research in this field internationally. In this issue, we have five papers from Australian groups, five from the USA and two from Europe. Third, the family members studied include parents and siblings. Finally, researchers have addressed a very broad range of factors that might affect family members’ well-being and experiences. These include: lifespan and transition issues, socio-economic variables, ethnicity, behaviour problems, personality variables, and marital relationships. We believe that this collection of papers helps to represent the range and quality of research relating to families of people with IDs, and hope that the research findings are of interest to readers of the journal. These papers clearly underscore the central role that families play in adjustment of individuals with IDs and the need to include them as partners in management. In addition, it is clear that families deserve research and practical attention in their own right. We would like to thank the authors who submitted their work for the special issue, reviewers who gave of their time to provide comments on submitted papers, and to JIDR and Blackwell’s editorial staff for their support in the preparation of the special issue.

BACKGROUND: The study aims to understand system barriers to research participation for people with intellectual disabilities. METHODS: A mixed-methods approach examined the inclusivity of people with intellectual disabilities (IDs) in a random sample of National Institute for Health and Care Research (NIHR) studies conducted in 2019-2020. An online questionnaire (stage 1) was sent to the selected studies lead investigators. An expert by experience panel of 25 people with intellectual disabilities (IDs, stage 2), discussed the stage 1 feedback. Descriptive statistics for quantitative data and thematic analysis for qualitative data was conducted. RESULTS: Of 180 studies reviewed, 131 studies (78%) excluded people with IDs. Of these, 45 (34.3%) study researchers provided feedback. Seven (20%) of the 34 studies which included people with IDs gave feedback. Of all respondents over half felt their study had some relevance to people with IDs. A minority (7.6%) stated their study had no relevance. For a quarter of respondents (23.5%), resource issues were a challenge. Qualitative analysis of both stages produced four overarching themes of Research design and delivery, Informed consent, Resource allocation, and Knowledge and skills. CONCLUSION: Health research continues to exclude people with IDs. Researchers and experts by experience identified non-accessible research design, lack of confidence with capacity and consent processes, limited resources such as time and a need for training as barriers. Ethics committees appear reluctant to include people with cognitive deficits to 'protect' them. People with IDs want to be included in research, not only as participants but also through coproduction.

This study provides quantitative evidence on how the use of journal rankings can disadvantage interdisciplinary research in research evaluations. Using publication and citation data, it compares the degree of interdisciplinarity and the research performance of a number of Innovation Studies units with that of leading Business & Management schools in the UK. On the basis of various mappings and metrics, this study shows that: (i) Innovation Studies units are consistently more interdisciplinary in their research than Business & Management schools; (ii) the top journals in the Association of Business Schools' rankings span a less diverse set of disciplines than lower-ranked journals; (iii) this results in a more favourable assessment of the performance of Business & Management schools, which are more disciplinary-focused. This citation-based analysis challenges the journal ranking-based assessment. In short, the investigation illustrates how ostensibly 'excellence-based' journal rankings exhibit a systematic bias in favour of mono-disciplinary research. The paper concludes with a discussion of implications of these phenomena, in particular how the bias is likely to affect