Field Of Intellectual Disability Research Articles

Successful strategies for including adults with intellectual disabilities in research studies that use interpretative phenomenological analysis.

Adults with intellectual disabilities are not often asked to participate in health research. This may be because researchers perceive them as unable to participate meaningfully with or without significant support and anticipate difficulty in obtaining ethical approval because of issues concerning consent and mental capacity. This means that the voices of adults with intellectual disabilities are often missing from health research and their experiences and views are unexplored. To share successful strategies for accessing, recruiting and collecting data from a purposive sample of adults with intellectual disabilities from a study that used interpretative phenomenological analysis (IPA). IPA is a person-centred, flexible and creative approach to research. Meaningful collaboration with people with intellectual disabilities, their families, carers, advocacy group managers, specialists in intellectual disability services and research supervisors was vital to the success of the study. The authors share practical strategies for including people with intellectual disabilities, from the perspective of a novice researcher who is an outsider to the field of intellectual disability. It is important to include people with intellectual disabilities in healthcare research. This article presents a framework to support researchers outside the specialist field of intellectual disabilities in achieving this. Personal views and perceptions of healthcare are important if health services are to meet individual needs. Adults with intellectual disabilities often receive poor healthcare and have poorer outcomes. This will be perpetuated without their input into research. People with intellectual disabilities can make valuable contributions to the evidence base.

Critical factors in capacity building of NGOs in the intellectual disability sector in India: PLS SEM modelling

PurposeMost of the services being delivered to persons with disabilities (PwDs) in India are through non-government organizations (NGOs). The quality and effectiveness for the delivery of services to PwDs largely depends on the capacity of the NGOs involved. This study attempts to understand the linkage between various capabilities of non-profits organizations working in the field of intellectual and developmental disabilities and their value creation.Design/methodology/approachUsing a mixed methodology, the study has conducted various interviews with the involved stakeholders and interviews to obtain a complete understanding and overcome the limitations of quantitative or qualitative approach alone.FindingsThe findings of this study exhibit that there is a significant and positive influence of financial capability, human resource capability, stakeholder capability, dynamic capability and collaboration capability on non-profit performance. However, knowledge capability has no effect on non-profit performance.Originality/valueThis study will help in making policies for policymakers in capacity building of NGOs. This research study is the first attempt in exploring the critical factors in capacity building of NGOs in the intellectual disability sector, particularly in India.

Understanding environmental epigenomics in autism spectrum disorder: an interview with Farah RZahir.

In this interview, Dr Farah RZahir speaks with Storm Johnson, Commissioning Editor for Epigenomics, on her work to date in the field of epigenomics, autism and intellectual disability. Dr Farah RZahir specializes in the identification of novel genetic and epigenetic causes for neurodevelopmental diseases. Her PhD, awarded in 2011 by the University of British Columbia (UBC), resulted in the characterization of new intellectual disability (ID) syndromes, as well as discovery of several new causative genes for the disorder. She was awarded the prestigious James Miller Memorial Prize for integrating basic and clinical science in 2010. Her PhD dissertation was nominated for the Governor General's gold medal - the highest possible accolade at UBC for doctoral research work. She then completed a postdoctoral tenure in Canada's premier Michael Smith Genome Sciences Centre, where she used whole-genome-sequencing methods to comprehensively assess genetic, molecularand structural causes for ID, employing several firsts for bioinformatic data mining in the field. During her postdoctorate she won three distinguishedawards and was a fellow of the Canadian Institute of Health Research, ranking in the top 2% nationally. Dr Zahir was appointed as an Assistant Professor at the Hamad Bin Khalifa University in 2016, where she led a group focused on neurogenomics and neuroepigenomics research. She was a foundingmember of the Precision and Genomics Medicine graduate program there. Currently she has rejoined UBC's department of Medical Genetics. Among her most significant achievements is the establishment of the novel Zahir Friedman syndrome, an intellectual disability/autism spectrum disorder syndrome that is caused by a major epigenomic regulator. Her current primary research interest is how epigenomics can be changed by environmental impactsand how these effects may be harnessed for neurodevelopmental disorders' prophylaxis and therapeutics.

The perspective of emerging adults with Down syndrome – On quality of life and well-being

This study explored the thoughts of emerging adults with Down syndrome on quality of life and subjective well-being. Eight 22-year-olds participated in interviews. Data was analysed with content analysis. Four themes were revealed: Work based on interest and capability, having an active and social leisure life, a safe place to live and the use of information and communication technology. Two context related patterns were identified showing that quality of life and subjective well-being were related to individualised support to enhance independency in work, social leisure and place of living. Knowledge of their perception of independency and their awareness of needing customised help and support is valuable. This study supports the proposed emerging Quality of Life Supports Paradigm in the field of intellectual disabilities, which integrates key concepts of quality of life and supports.

Who Is Leading the Field in 2020?: AAIDD Students and Early Career Professionals.

The American Association on Intellectual and Developmental Disabilities (AAIDD) has been a leader in the field of intellectual and developmental disabilities since its founding in 1876. Today, student and early career professionals make up approximately 8.5% of the organization, with their engagement supported by the Student and Early Career Professional Interest Network (SECP). An article by Havercamp et al. (2003), "Who Will Lead the Field Beyond 2020?", recommended organizational changes that have been largely addressed in the years following by SECP. The present research replicates Havercamp et al.'s (2003) original survey of the organization's student and early career professionals, and results support the effectiveness of SECP as a welcoming platform from which students and early career professionals can establish themselves in the organization.

Ed Zigler's developmental approach to intellectual disabilities: Past, present, and future contributions.

Comprising two parts, Ed Zigler's developmental approach has greatly influenced how one conceptualizes children with intellectual disabilities (ID). In part one, Zigler championed a "two-group approach" concerning the cause of children's ID. He distinguished persons with a clear, organic cause of their ID from those displaying no clear cause. Members of this "organic" group often displayed IQs below 50 and co-occurring physical-medical conditions. The second, "cultural-familial" group, mostly showed IQs of 50-70, did not possess co-occurring physical or health problems, and often came from families of lower IQs and lower socioeconomic status. While the presence of these two groups has been supported, recent advances have also further differentiated the organic group, mostly in relation to behavioral phenotypes of persons with several genetic etiologies. In part two, Zigler championed the child with ID as a "whole person." Originally focused on the child's reactions to social deprivation and failure, recent studies directly examine parent-child, within-family, and wider system interactions throughout the life span. For decades a force within the ID field, Zigler's developmental approach to children with ID continues to influence researchers, interventionists, and policymakers.

Estimated Effects of Web-Based Course from Adult Vocational Students’ Perspective—A PFA Course in Scandinavian Intellectual Disability Practice

In Scandinavia, the field of intellectual disability (ID) practice lacks specific course, professional training, theoretical foundation, guidelines, and practice consensus. However, Pedagogiskt Förhållnings-och Arbetsätt (PFA model) has the potential to offer a pedagogical attitude and a way of working within ID practice. PFA was developed in the context of Swedish ID practice and has attracted national and European interest. Most staff working in ID practice in Scandinavia are educated to upper secondary school (adolescent students) level or vocational course (adult students) level. In the present pilot study, we examined the effects of providing a web-based PFA course as a complement to the Swedish national curriculum. The aim of this pilot study was to assess the effects of self-assessed knowledge and learning using a web-based PFA course intervention on an adult vocational course. The study involved a quantitative intervention approach involving two equivalent groups in an experimental design: an experimental group (n = 12) and a comparison group (n = 46). These groups were administered a pre-test and a post-test questionnaire that estimated their knowledge of the course through self-reporting tests. The findings provide empirical evidence of the informed and sustained use of knowledge building through complementary web-based PFA courses.

Editorial introductions.

Current Opinion in Psychiatry was launched in 1988. It is one of a successful series of review journals whose unique format is designed to provide a systematic and critical assessment of the literature as presented in the many primary journals. The field of psychiatry is divided into 11 sections that are reviewed once a year. Each section is assigned a Section Editor, a leading authority in the area, who identifies the most important topics at that time. Here we are pleased to introduce the Journal's Section Editors for this issue. SECTION EDITORS James C. HarrisJames C. HarrisDr James C. Harris is the founding Director of the Developmental Neuropsychiatry program at the Johns Hopkins University School of Medicine and the Kennedy Krieger Institute and Professor of Psychiatry and Behavioral Sciences, Pediatrics, Mental Health, and History of Medicine, USA. Dr Harris’ two volume single authored textbook, Developmental Neuropsychiatry, established the agenda for this emerging clinical specialty, garnering the Medical Book of the Year award from Doody's Health Science Books. He is series editor for Developmental Perspectives in Psychiatry for Oxford University Press US and writes the section on Developmental Neuropsychiatry for the Oxford Textbook of Psychiatry. In 1983, he founded the Autism Clinic at Johns Hopkins University School of Medicine. He received the George Tarjan Award for outstanding leadership and continuous contributions in the field of intellectual disability from the American Academy of Child and Adolescent Psychiatry, and is the recipient of the Agnes Purcell McGavin Award for Distinguished Career Achievement from the American Psychiatric Association in recognition of his pioneering work in developmental neuropsychiatry. In 2011, he received the Leon Eisenberg Award from Harvard Medical School, USA, for outstanding leadership and stewardship in the field of mental health and disabilities. He is the 2015 recipient of the Frank J. Menolascino Award for Psychiatric Services for Persons with Intellectual Developmental Disorders and the 2017 recipient of the American Academy of Child and Adolescent Psychiatry Catcher in the Rye Award for Life Time Steadfast Advocacy for Children with Psychiatric Disorders. His goal in working with children with neurodevelopmental disabilities has focused on helping each child to reach his or her individual potential believing, as he does, that all children are capable of personal self-expression and growth. Perminder S. SachdevPerminder S. SachdevDr Perminder S. Sachdev is Scientia Professor of Neuropsychiatry at the University of New South Wales, Australia, Co-Director of the Centre for Healthy Brain Ageing (CHeBA), and Clinical Director of the Neuropsychiatric Institute, the Prince of Wales Hospital in Sydney, Australia. He graduated from the All-India Institute of Medical Sciences, New Delhi, India, and completed his MD in psychiatry from that institution before migrating to New Zealand and then to Australia where he completed his psychiatric training and went on to head the Neuropsychiatric Institute. His doctorate was on the ethnopsychological concepts in Maori culture. His early work in neuropsychiatry was on drug-induced movement disorders, in particular akathisia, tardive dyskinesia and neuroleptic malignant syndrome. His most recent work has been in cognitive ageing, dementia and pre-dementia syndromes. Dr Sachdev is Past-President of the International Neuropsychiatric Association and was inaugural Chair of the Section of Neuropsychiatry of the Royal Australian and New Zealand College of Psychiatrists. He was the recipient of the Organon Senior Research Award of the RANZCP in 1995, the Novartis Oration of the Australasian Society for Psychiatric Research in 2004, and the inaugural INA-India lecture in 2005. He has published five books and over 350 original papers in peer-reviewed journals. His recent academic book is Secondary Schizophrenia (Cambridge University Press). His foray into popular science writing was celebrated with his recent book The Yipping Tiger and other tales from the neuropsychiatric clinic, which won the 2009 Rotary Health Knowledge Dissemination Award. He was awarded the NSW Biomedical Scientist of the Year 2010. He was made Member of the Order of Australia in 2011. He is the current President of the International College of Geriatric Psychoneuropharmacology.

A New Paradigm in the Field of Intellectual and Developmental Disabilities: Characteristics and Evaluation.

A new paradigm, which we refer to as The Quality of Life Supports Paradigm, is emerging internationally in the field of intellectual and developmental disabilities. The new paradigm integrates the key concepts of "quality of life" and "supports". This article addresses the question of how one evaluates a new paradigm. This is a conceptual work that describes five characteristics of a paradigm. The characteristics are based on the groundbreaking work of relevant authors in the field of intellectual and developmental disabilities, quality of life, supports, and evaluation. The five characteristics are that a paradigm is theory driven, ethical, flexible, adaptable, and measurable. The article especially delves into the fifth characteristic and provides specific examples of how to evaluate the new paradigm. The new paradigm encompasses core values, accommodates contextual factors, and can be used for multiple purposes to positively impact the development and implementation of value-based policies and practices that enhance the quality of life and personal well-being of people with intellectual and developmental disabilities.

Goal Attainment Scaling: A Framework for Research and Practice in the Intellectual and Developmental Disabilities Field.

Goal setting and attainment is often a targeted outcome in the intellectual and developmental disabilities field; however, standardizing the measurement of attainment of individualized goals is challenging. The purpose of this article is to introduce a four-domain framework that provides a series of questions to research and evaluation teams in planning for the use of goal attainment scaling (GAS) as an outcome measure at the individual or aggregate level. We intend to stimulate discussion and ongoing work to further systematize how GAS is used in (a) intervention research to establish evidence-based practices and (b) practice to assess the extent to which interventions and supports lead to intended outcomes. The goal is to promote a clear planning process to inform data collection on individualized goal attainment outcomes that are rooted in goals and outcomes valued by people with intellectual and developmental disabilities.

Blurring the Boundaries: Reflections From Early Career Faculty During the COVID-19 Era.

The last three issues of Intellectual and Developmental Disabilities (IDD) have featured perspectives from a diverse set of contributors on how the field of intellectual and developmental disabilities (IDD) is being impacted by COVID-19. As four newly appointed faculty members with diverse backgrounds, the editor of IDD invited us to share our experiences with beginning academic careers during this unique time. In making this request, he pointed out that approximately half the members of the American Association on Intellectual and Developmental Disabilities (AAIDD) are those who have some type of affiliation with an institution of higher education. While the perspectives outlined in this article do not represent those of all early career faculty, we hope our stories resonate with IDD readers who may be facing similar circumstances. This article includes a series of brief essays addressing how the pandemic has affected our academic job searches, research, teaching, and service. Although penned by different authors, each section encompasses our collective experiences, concerns, and hopes for the broader IDD community. We close with guiding questions that might support more socially responsive and integrated approaches to traditional academic roles as faculty continue to navigate the repercussions of COVID-19.

Internet and People with Intellectual Disability: A Bibliometric Analysis

The use of the Internet by people with intellectual disabilities is an area of study that has captured the interest of scientists in recent years. The studies have focused on analyzing specific aspects such as usability, the activities carried out online, and Internet benefits and risks, among others. The reviews published on this matter have been of a narrative or systematic approach. The present study aimed to examine the academic output in the field of Internet and people with intellectual disability from a bibliometric perspective. A sample of 95 documents related to the topic was retrieved from the core collection of Web of Science (WoS) and analyzed using the bibliometrix R-Tool. Findings show a recent increase in publications related to the subject and confirm Price’s and Bradford’s laws. The most relevant sources on the topic are devoted to the research field of intellectual disability and Spain, the United Kingdom and Sweden stand out as the most productive countries. Studies tend to be published by co-authorship in journals indexed at the Journal Citation Reports (JCR) achieving a global impact. However, international scientific collaboration is still scarce. Further bibliometric analyses are recommended to build a complete panorama of the research field.

UK psychiatrists' experience of withdrawal of antipsychotics prescribed for challenging behaviours in adults with intellectual disabilities and/or autism.

A high proportion of adults with intellectual disabilities are prescribed off-licence antipsychotics in the absence of a psychiatric illness. The National Health Service in England launched an initiative in 2016, 'Stopping over-medication of people with a learning disability [intellectual disability], autism or both' (STOMP), to address this major public health concern. To gain understanding from UK psychiatrists working with adults with intellectual disabilities on the successes and challenges of withdrawing antipsychotics for challenging behaviours. An online questionnaire was sent to all UK psychiatrists working in the field of intellectual disability (estimated 225). Half of the 88 respondents stated that they started withdrawing antipsychotics over 5 years ago and 52.3% stated that they are less likely to initiate an antipsychotic since the launch of STOMP. However, since then, 46.6% are prescribing other classes of psychotropic medication instead of antipsychotics for challenging behaviours, most frequently the antidepressants. Complete antipsychotic discontinuation in over 50% of patients treated with antipsychotics was achieved by only 4.5% of respondents (n = 4); 11.4% reported deterioration in challenging behaviours in over 50% of patients on withdrawal and the same proportion (11.4%) reported no deterioration. Only 32% of respondents made the diagnosis of psychiatric illness in all their patients themselves. Family and paid carers' concern, lack of multi-agency and multidisciplinary input and unavailability of non-medical psychosocial intervention are key reported factors hampering the withdrawal attempt. There is an urgent need to develop national guidelines to provide a framework for systematic psychotropic drug reviews and withdrawal where possible.

COVID-19 and the Field of Intellectual and Developmental Disabilities: Where Have We Been? Where Are We? Where Do We Go?

The coronavirus (COVID-19) pandemic has affected, and will continue to affect, every aspect of the intellectual and developmental disabilities (IDD) community. We provide recommendations to (a) support people with IDD and the broader of field of IDD during the course of the pandemic, and (b) place the IDD community in a strong position when the health threats associated with the pandemic abate and post-pandemic social and policy structures are formed.

Impacto de la musicoterapia en la calidad de vida de personas con discapacidad intelectual: una revisión de la literatura

La musicoterapia es una modalidad de intervención ampliamente utilizada en el ámbito de la discapacidad intelectual. Los resultados personales de las intervenciones que suponen una mejora en la calidad de vida son considerados, a día de hoy, como un indicador de buenas prácticas en este ámbito. El objetivo del presente trabajo es relacionar los resultados de intervenciones de musicoterapia en personas con discapacidad intelectual con las dimensiones del modelo de calidad de vida de Schalock y Verdugo. Con tal fin se ha llevado a cabo una revisión bibliográfica con un resultado de doce estudios con validez metodológica. Se ha procedido a relacionar los resultados de las intervenciones con los indicadores de cada una de las dimensiones del modelo de calidad de vida propuestos por Schalock y Verdugo. Los resultados informan que la mayor parte de las intervenciones persiguen objetivos relacionados con las dimensiones: bienestar emocional, relaciones interpersonales e inclusión social.

Empowerment and ownership in intellectual disability gaming

As with other populations, the usage of games by people with Intellectual Disability (ID) has been increasingly approached by research. Notwithstanding, the role of games in the lives of people with disabilities tends to be studied through a categorical picture that emphasizes its therapeutic characteristics and neglects games as recreation and as a form of cultural expression. The present work aims to review the main research outcomes of the last 10 years in the field of gaming and ID. It presents an analysis of the main research objectives and approaches to gaming adopted in the analysed studies, as a path to reflect on two specific concepts: empowerment and ownership. Therefore, a Systematic Literature Review (SLR) methodology, accompanied by statistical and content analysis procedures, was adopted to analyse a sample of 61 peer-reviewed research papers (2010-2020) in this field. The obtained results emphasize the passive role of individuals with ID in games research, with gaming mainly seen through therapeutic our game-based learning approaches. The presented reflection on inclusive research, through the parallelism between game studies and critical disability studies, also highlights that the access to games, as a cultural expression, for people with ID could foster the inclusion of these individuals in the public sphere, both in media and in the democratic civic structures. The produced insights intend to frame future approaches that situate the potential of games and their accessibility as strategies to decrease environmental barriers and hindrances that people with ID face in their specific contexts and foster inclusion.

Autodétermination et promotion de la santé chez les adultes présentant une déficience intellectuelle : une revue systématique de la littérature

Despite major improvements in the conceptual and functional approach of disability, some fundamental inequities remain. Among them, lacks in health access and health status are of importance both for research and public health policies. Particularly as regards intellectual disability (ID), in which major inequities remain and contrast with specific and sometimes increased somatic and mental health needs. In this context, health promotion initiatives designed for adult with intellectual disabilities should succeed to integrate several variables such as a holistic view of health, the importance of individual–environmental interaction, as well as the concept of self-determination. These variables have indeed been largely documented as key component in the field of ID. The purpose of this study is to analyse the available literature on health promotion for adults with ID as regards the integration of these variables, both in form and content. The results suggest several lacks in the conception of health promotion initiatives; such as an over-focus on individual abilities at the expense of environmental actions, and low consideration for the concept of global health or the volitional dimension of behaviours. Therefore, once more pointing the gap between knowledge and practice in the field of ID. Results are discussed in terms of future direction for research and clinical practice.

Vocabulario y comprensión lectora: una investigación empírica con escolares intelectualmente discapacitados

Reading is one of the priority objectives of Elementary Education (from 1st to 8th grade in Chile), which in turn enables further learning at school. However, reading comprehension is an under-explored topic in the field of intellectual disability (ID). Studies on the reading of children with ID are very scarce and there is no known research that analyses the impact of the vocabulary level of students with ID on reading proficiency. In this context, a research study was carried out to analyse the relationship between vocabulary and reading comprehension in a sample of intellectually disabled students, in which 12 schoolchildren from the 1st to 4th grade and 10 schoolchildren from the 5th to 8th grade participated from three urban schools of the same city. Through an exploratory, correlational and cross-sectional study, it was concluded that in general vocabulary does not correlate significantly with reading comprehension in schoolchildren with ID.

Estructura Dimensional de la Escala KidsLife, versión Colombia, para la Evaluación de Calidad de Vida en Discapacidad Intelectual

The discussion about the validity of the factor structure of the dimensions that constitute the quality of life (QOL) construct in the field of intellectual disability has highlighted the need to conduct new studies. The aim of this study was to analyze the dimensional structure of the KidsLife Scale, designed upon the basis of the 8-factor QOL model advanced by Schalock and Verdugo Alonso (2007). Using a convenience sample, the scale was administered to the caregivers of 220 people receiving support in specialized institutions. These caregivers' wards were between 4 and 21 years old, had been diagnosed with intellectual disability, and resided in 3 cities in Colombia. The study, of an instrumental nature, was conducted using structural equation modeling, confirmatory factor analysis, construct reliability analysis, average variance extracted, and multiple correlations R2. Working hypotheses based on 5 different models were analyzed. The model composed of 8 interrelated dimensions displayed factor loadings ranging from 0,63 to 0,95, multiple correlations between 0,24 and 0,81, a general reliability value of 0,979, and an average variance extracted greater than 50%, without any second-order dimensions being identified. It is concluded that the proposed KidsLife Scale model positively reports the QOL of people with intellectual disabilities in 3 Colombian cities. New studies are needed to identify the possible existence of second-order factors.

Intellectual disability stigma and initiatives to challenge it and promote inclusion around the globe

There is a dearth of studies that have examined the attitudes of society toward people with intellectual disabilities (IDs) on a global scale. This study set out to gauge the extent to which ID continues to be stigmatized and to which initiatives are in place to increase their inclusion and tackle stigma around the globe. Data were collected using a web survey from 667 experts and organizations in the (intellectual) disability field pertaining to 88 countries and covering all world regions. Information about the study was disseminated by four multinational disability organizations, and the survey was available in five languages. Findings and responses indicated that the general public in many parts of the world broadly support the fundamental principle of inclusion of children and adults with IDs, yet negative attitudes persist. High levels of stigma and denial of fundamental rights still appeared a reality in many places. Initiatives to tackle stigma appeared patchy and least in evidence where they were most needed. In many parts of the world the life chances of people with IDs often appear still very poor, and support and advocacy almost entirely their families' responsibility. More needs to be done globally to reduce the stigma associated with ID and to promote active engagement and regular social interactions between persons with IDs and their fellow citizens without IDs.