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Impact of infection outbreak on people with intellectual disabilities: A scoping review J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2021-04-02 Petri J. C. M. Embregts, Sara L. P. Nijs, Wietske M. W. J. van Oorsouw
ABSTRACT Background One would assume that infection outbreaks such as the COVID-19 pandemic have a deleterious effect upon the physical, mental, and/or social functioning of people with intellectual disabilities (ID). Methods A systematic search of four databases produced 18 articles. General information pertaining to the topics under consideration, information related to infectious diseases and ID
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Timetabling a transition with dignity: Perspectives of young adults with significant support needs J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2021-03-28 Sarah M. Hart, Mary F. Hill, Janet S. Gaffney
ABSTRACT Background This study investigated transition, or school leaving, as experienced by young adults living in Aotearoa New Zealand who had significant intellectual and developmental disabilities. Method To investigate these typically unheard perspectives, qualitative methods were adapted to individual communication preferences. Personal and contextual intersections were critically analysed using
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Performance, purpose, and creation of encounter between people with and without intellectual disabilities J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2021-03-05 Christine Bigby, Ilan Wiesel
(2021). Performance, purpose, and creation of encounter between people with and without intellectual disabilities. Journal of Intellectual & Developmental Disability: Vol. 46, No. 1, pp. 1-5.
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Obstacles to the transition to adulthood of people with severe to profound intellectual disability and potential solutions: Perspectives of professionals in one region of Quebec J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2021-02-23 C. Gauthier-Boudreault, M. Couture, F. Gallagher
ABSTRACT Background Planning the transition to adulthood of youth with severe to profound intellectual disability (ID) requires professionals from different institutions to work together. However, there are few studies in the literature that focus on professionals involved in this transition. Method This study documented factors impacting the transition to adulthood of youth with severe to profound
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Barriers and facilitators to implementation of a guideline for school-aged children with feeding difficulties J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2021-02-21 Anna Miles, Celine Wong, Bianca Jackson
ABSTRACT Background Swallowing difficulties are common and complex in children with physical, behavioural, and cognitive needs. This study (i) describes mealtime management and (ii) identifies barriers and facilitators to implementation of a guideline for school-aged children with feeding difficulties in one specialist school. Method Three data sets were collected: (i) 51 school records, (ii) 48 meal
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Differences in disease severity and in-hospital mortality in patients hospitalised for pneumonia with and without intellectual disabilities: A matched-pair retrospective cohort study using nationwide in-patient database J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2021-02-21 Naoki Hirose, Kojiro Morita, Taisuke Jo, Yasuhiro Hagiwara, Hiroki Matsui, Kiyohide Fushimi, Hideo Yasunaga
ABSTRACT Background We examined the association between intellectual disabilities (ID) and pneumonia severity at admission. Methods We extracted patients admitted to hospital for pneumonia from July 2010 to March 2018 using the Diagnosis Procedure Combination database. We measured pneumonia severity using the A-DROP system. After 1:4 cohort matching between patients with and without ID, we conducted
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Passing laws is not enough to change staff practice: The case of legally mandated “incident” reporting in Sweden J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2021-02-14 Petra Björne, Roy Deveau, Lena Nylander
ABSTRACT Background It is mandatory for staff in Swedish community services for people with intellectual disabilities to report incidents of error or malpractice. Aim The aim is to study if incident reports contribute to developing quality in services for people with intellectual disabilities who present with challenging behaviours. Method 159 reports on incidents from group homes and daily activities
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Shadowing as a qualitative research method for intellectual disability research: Opportunities and challenges J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2021-02-14 Simon van der Weele, Femmianne Bredewold
ABSTRACT Background While qualitative research on intellectual disability is on the rise, researchers have frequently reported that their methods bring methodological and ethical challenges. The authors advance shadowing as an alternative method to respond to these concerns. Method The authors draw on their experiences with shadowing on the basis of two separate studies respectively, involving 28 and
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“It’s ignorant stereotypes”: Key stakeholder perspectives on stereotypes associated with fetal alcohol spectrum disorder, alcohol, and pregnancy J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2021-02-10 John Aspler, Aline Bogossian, Eric Racine
ABSTRACT Background People with fetal alcohol spectrum disorder (FASD) and women who drink alcohol while pregnant can experience stigma, possibly exacerbated by stereotyped media portrayals. Method To understand experiences of FASD stakeholders and reactions to news coverage, we conducted twelve focus groups across three categories: (1) people with FASD; (2) caregivers; and (3) professionals. Themes
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Barriers to the NDIS for people with intellectual disability and/or complex support needs involved with the criminal justice systems: The current state of literature J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2021-02-08 Claire Spivakovsky
ABSTRACT Background This study synthesises current literature concerning the barriers to the National Disability Insurance Scheme (NDIS) faced by people with intellectual disability and/or complex support needs who are involved with the criminal justice system, or at risk of (re)involvement. Method Through targeted searches of key databases, 41 publications were identified from the scholarly and grey
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What does the French public think about inclusive education? J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2021-02-05 Mickaël Jury, Kamilla Khamzina, Anne-Laure Perrin, Natacha Serour, Emmanuel Guichardaz
ABSTRACT Background To explain that students with intellectual disabilities are not fully included in mainstream education, the present paper investigates public attitudes towards inclusive education and notably examines how these vary according to students' type of disability (i.e., an intellectual, a communicational, a sensory, a motor, or a specific learning one). Method Data were extracted from
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Barriers to the NDIS for people with intellectual disability and/or complex support needs involved with the criminal justice systems: The current state of literature J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2021-02-08 Claire Spivakovsky
ABSTRACT Background This study synthesises current literature concerning the barriers to the National Disability Insurance Scheme (NDIS) faced by people with intellectual disability and/or complex support needs who are involved with the criminal justice system, or at risk of (re)involvement. Method Through targeted searches of key databases, 41 publications were identified from the scholarly and grey
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Caregiver perceptions of care of a medical-dental community clinic for adults with autism and intellectual disabilities: Implementing a program evaluation J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2021-01-31 Jonathan Lai, Owen Dan Luo, Malvina Klag, Keiko Shikako-Thomas
ABSTRACT Background Providing medical and dental care for adults with developmental disabilities requires specialised care that includes caregiver’s perceptions of processes of care as integral to informing care delivery. Method We examined the reach and efficacy of a medical-dental clinic serving adults with developmental disabilities as part of a program evaluation in the community setting. Using
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Growing up with a brother or sister with Down syndrome: Adult siblings’ perceptions of their childhood relationships J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2021-01-21 Lise Lemoine, Benoît Schneider
ABSTRACT Background The increased life expectancy of people with Down syndrome puts pressure on parents, who are usually the main caregivers but who find caring more difficult as they get older. The quality of the support provided by brothers and sisters depends on the intra-family relationships they build when growing up. Methods 121 adult siblings of people with Down syndrome completed a questionnaire
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Examining potential predictors of attention training outcomes in children with intellectual and developmental disorders J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-12-23 Hannah E. Kirk, Adi Raber, Sally Richmond, Kim M. Cornish
ABSTRACT Background: Responses to digital cognitive training interventions vary greatly among children with intellectual and developmental disorders (IDD). Investigating possible predictors of improvements following training is vital in ascertaining which individuals benefit from these interventions. Methods: Seventy-three children (4–11 years) with IDD completed attention training or a placebo program
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Psychometric properties of the ABSI-id, an adapted measure for anger-related interoceptive awareness in individuals with mild intellectual disabilities or borderline intellectual functioning J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-12-23 Tina Bellemans, Robert Didden, Hubert P. L. M. Korzilius, Jooske T. van Busschbach
ABSTRACT Background: The present study examined the psychometric properties of the Anger Bodily Sensations Interview – intellectual disabilities (ABSI-id), an adapted instrument to measure anger-related interoceptive awareness (IA) in individuals with mild intellectual disabilities or borderline intellectual functioning (MID-BIF). Method: The ABSI-id was individually administered to 208 clients (51%
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A visual report on what is of value for people with intellectual disabilities in a Flemish care organisation J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-12-17 Toon Benoot, Wouter Dursin, Bram Verschuere, Rudi Roose
ABSTRACT Background: This paper presents the findings from a qualitative research project that explored what ten people with intellectual disabilities who receive care and support in a residential care facility deem valuable for living a good life and what the opportunity to manage resources for care and support themselves means to them. Method: With the use of photovoice, the 10 participants documented
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Struggling with sameness and strangeness: (Non)-encounters between people with and without intellectual disabilities in two Dutch neighbourhoods J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-12-17 Femmianne Bredewold
ABSTRACT Background In the debate on the social inclusion of people with intellectual disabilities, we find various proposals for dealing with sameness and difference. A more inclusive understanding of difference is needed to ensure that the perspectives of people with intellectual disabilities are taken into account. Method This study involved in-depth interviews with 25 individuals with intellectual
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Exploring the complexity of implementing National Disability Insurance Scheme plans for adults with intellectual disability: Parents’ perspectives J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-12-17 Jan Lloyd, Karen Moni, Monica Cuskelly, Anne Jobling
ABSTRACT Background With the introduction of the National Disability Insurance Scheme (NDIS), creation and implementation of participants’ plans are becoming a research focus. As many families facilitate the implementation of plans, it is important to understand the enablers and barriers to this process. Method This study investigated the experiences of 20 family groups with adult participants with
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Beyond inclusion: Why research on encounter needs a feminist account of freedom J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-12-17 Stacy Clifford Simplican
ABSTRACT Background Though the concept of encounter promises to move the field of social inclusion beyond the dichotomy of presence and participation, new work in political theory pushes encounter in a different direction, making freedom – not inclusion – the central value at stake. Methods Interpretative video analysis was conducted on an online learning program “Supporting Inclusion” developed to
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Struggling with sameness and strangeness: (Non)-encounters between people with and without intellectual disabilities in two Dutch neighbourhoods J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-12-17 Femmianne Bredewold
ABSTRACT Background In the debate on the social inclusion of people with intellectual disabilities, we find various proposals for dealing with sameness and difference. A more inclusive understanding of difference is needed to ensure that the perspectives of people with intellectual disabilities are taken into account. Method This study involved in-depth interviews with 25 individuals with intellectual
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Beyond inclusion: Why research on encounter needs a feminist account of freedom J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-12-17 Stacy Clifford Simplican
ABSTRACT Background Though the concept of encounter promises to move the field of social inclusion beyond the dichotomy of presence and participation, new work in political theory pushes encounter in a different direction, making freedom – not inclusion – the central value at stake. Methods Interpretative video analysis was conducted on an online learning program “Supporting Inclusion” developed to
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2019 JIDD Awards Announcement J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-12-07
(2020). 2019 JIDD Awards Announcement. Journal of Intellectual & Developmental Disability: Vol. 45, No. 4, pp. (i)-(i).
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Dedifferentiation in context J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-12-07 Jennifer A. Clegg
(2020). Dedifferentiation in context. Journal of Intellectual & Developmental Disability: Vol. 45, No. 4, pp. 305-308.
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An ethnography exploring the limits of dedifferentiation in the lives of adults with intellectual disabilities J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-10-06 C. A. Banks, R. Gooberman-Hill, D. Wainwright
ABSTRACT Background: Dedifferentiation refers to the trend of positioning people with intellectual disabilities together with other disabled individuals for political purposes, to act as a counter to differentiated approaches. This article explores the influence of dedifferentiation in professional support settings through the lived experiences of people with intellectual disabilities and their staff
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2020 Reviewers J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-12-07
(2020). 2020 Reviewers. Journal of Intellectual & Developmental Disability: Vol. 45, No. 4, pp. 398-398.
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Mortality, predictors and causes among people with intellectual disabilities: A systematic narrative review supplemented by machine learning J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-11-21 Freya Tyrer, Reza Kiani, Mark J. Rutherford
ABSTRACT Background There is a need to systematically compare and contrast mortality predictors and disparities in people with intellectual disabilities (ID) for global prevention strategy development. Method Bibliographic databases and grey literature were searched using systematic review methodology and the machine learning tool “Abstrackr.” Results Fifty-four relevant articles and reports published
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Perspectives of people with intellectual disability about their family networks: A comparison study with key support worker proxy reports J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-10-21 Tess Tournier, Alexander H. C. Hendriks, Andrew Jahoda, Richard P. Hastings, Sanne A. H. Giesbers, Petri J. C. M. Embregts
ABSTRACT Background The Family Network Method – Intellectual Disability (FNM-ID) was used to compare perspectives of people with mild intellectual disability and their support workers on family networks of people with intellectual disability. Method 138 participants with mild intellectual disability and support workers were interviewed, using the FNM-ID. Paired t-tests were used to examine differences
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Long-term outcomes following Fetal Alcohol Spectrum Disorder (FASD) diagnosis in adulthood J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-10-21 Valerie K. Temple, Sonal Prasad, Svetlana Popova, Ann Lindsay
ABSTRACT Background Early diagnosis of Fetal Alcohol Spectrum Disorder (FASD) is known to improve outcomes in children. It is less clear if diagnosis in adulthood also conveys benefits. This study investigated long-term outcomes for individuals diagnosed with FASD after 18 years of age. Method Twenty adults aged 18–45 years at FASD diagnosis were interviewed. Pre-diagnosis information was compared
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Possibility and risk in encounter between people with and without intellectual disability J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-10-29 Ilan Wiesel, Christine Bigby, Peter Kamstra, Jane Farmer
ABSTRACT Background Unpredictability, the risk of harm and possibility of rewards, are integral elements of encounter. Risk literature offers insight on the complex ways in which risk perceptions and attunements shape behaviours and interactions in encounter between people with and without intellectual disability. Method The paper draws on risk literature, encounter literature, and examples from the
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Study of decision-making capacity in Prader-Willi syndrome with a Gambling Task J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-10-20 J. Chevalère, A.-M. Camblats, V. Laurier, M. Tauber, D. Thuilleaux, V. Postal
ABSTRACT Background The present study investigated decision-making in patients with Prader-Willi syndrome (PWS) using the Soochow Gambling Task (SGT). The objective was to assess whether adults with PWS have impaired hot executive functions and whether the deficit is specific to PWS or linked to intellectual disabilities. Method The SGT performance of 26 adults with PWS was compared to that of 26 healthy
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Searching for balance: The effects of dance training on the postural stability of individuals with intellectual disability J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-10-14 Sarah DiPasquale, Mary Roberts
ABSTRACT Purpose: The purpose of this study was to examine if integrative dance classes have the potential to improve the postural stability in individuals with intellectual disability. Methods: A quasi-experimental, pretest-posttest research design was used to assess changes in postural stability of 16 individuals with intellectual disability. Postural stability was evaluated in bilateral stance with
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Futures of adults with intellectual disability: Staff expectations J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-10-06 Monica Cuskelly, Karen Moni, Mary McMahon, Anne Jobling, Jan Lloyd, Chez Leggatt-Cook
ABSTRACT Background: The study reported here investigated the views of staff who worked with adults with intellectual disability regarding the likely future of such adults. Method: Staff were provided with a short vignette portraying an adult with intellectual disability and asked to describe that individual’s future in five years and then to indicate the likelihood of the individual’s participation
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Micro-recognition, invisibility and hesitation: Theorising the non-encounter in the social inclusion of people with intellectual and developmental disabilities J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-09-21 Laurine Blonk
ABSTRACT Background: Often, people with and without intellectual disabilities do not mingle. Research has mostly focused on how to foster “convivial encounters” for social inclusion, but further thinking is needed on situations in which potential encounters do not take place. Method: Discussion of philosophical and urban sociological literature on social interaction in public. Results: In non-encounters
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Deconstructing the co-production ideal: Dilemmas of knowledge and representation in a co-design project with people with intellectual disabilities J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-09-11 Deborah Chinn, Caroline Pelletier
ABSTRACT Background: The co-production concept holds out the promise of forging new relationships between professionals and service users with intellectual disabilities. However, little empirical research explores the embodied practices of these projects occasion. We identify two key tensions intrinsic to such projects; the tension between expert/professional knowledge and lay/experiential knowledge
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Creating opportunities for convivial encounters for people with intellectual disabilities: “It looks like an accident” J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-09-10 Christine Bigby, Sian Anderson
ABSTRACT Background: “Convivial encounter” provides a new lens for understanding social inclusion of people with intellectual disabilities, characterised by shared activity and friendly interactions with strangers without intellectual disabilities. Places, props and support practices facilitate incidental convivial encounters. This study explored processes for deliberately creating opportunities for
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Being in control: Choice and control of support received in supported living. A study based on the narratives of people with intellectual disability and support staff J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-08-31 Maria Pallisera, Montserrat Vilà, Judit Fullana, Maria-Josep Valls
Background: This research aims to study the role of people with intellectual disability in taking decisions regarding the support provided under the supported living model. Method: Interviews were conducted with 13 people with intellectual disability, and six support professionals with experience working in organisations offering personalised support. These covered the person’s pathway, the support
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Cross-cultural preliminary validation of a measure of social vulnerability in people with intellectual disabilities J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-08-31 Mireille Tabin, Cindy Diacquenod, Nicola De Palma, Fabienne Gerber, Claudio Straccia, Carlene Wilson, Markus Kosel, Geneviève Petitpierre
ABSTRACT Background: Social vulnerability refers to the ways in which an individual is at risk of being victimised. The Test of Interpersonal Competences and Personal Vulnerability [TICPV] is an Australian assessment tool designed for adults with intellectual disabilities (ID) [Wilson et al. (1996). Vulnerability to criminal exploitation: Influence of interpersonal competence differences among people
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Perspectives of adults with intellectual disabilities and key individuals on community participation in inclusive settings: A Canadian exploratory study J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-08-31 Élise Milot, Romane Couvrette, Marie Grandisson
ABSTRACT Background: This article aims to present the results of a study on the facilitators and obstacles to community participation in inclusive settings for people with intellectual disabilities (ID) in Québec City (Canada), as perceived by adults with ID and key individuals involved in their daily lives. Method: Semi-structured interviews were conducted, followed by an inductive thematic analysis
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As if living like others: An idealisation of life in group homes for people with intellectual disability J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-08-14 Petra Björne
ABSTRACT Background: People with Intellectual Disability (ID) in Sweden should be enabled to live like others. This life like others is realised in group homes that have little in common with the typical home. Method: A reading of Appiah’s As if is used to discuss how people with ID are supported in Sweden. Current national data are presented within the framework of idealisation, the use of (useful)
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The role of professionals in strengthening social relations of adults with a disability in independent supported living: Practices and influencing factors J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-08-10 Evy Meys, Koen Hermans, Bea Maes
Background: Professionals play an important role in supporting the social relations of persons with a disability. This study looks at professional practices supporting or strengthening social relations of persons in independent supported living, by integrating the perspectives of adults with a disability, network members and professionals. Method: Fifty-one semi-structured interviews were carried out
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Validity of an instrument that assesses functional abilities in people with profound intellectual and multiple disabilities: Look what I can do! J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-08-10 Marleen D. Wessels, Muirne C. S. Paap, Annette A. J. Van der Putten
ABSTRACT Background: Research about the psychometric properties of the Behavioural Appraisal Scales (BAS) in people with profound intellectual and multiple disabilities (PIMD) is limited. This study evaluates invariance in factor structure, item bias and convergent validity of the BAS. Methods: Data on the BAS from two studies (n = 25; n = 52) were analysed using the oblique multiple group method.
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A systematic review of emotion regulation measurement in children and adolescents diagnosed with intellectual disabilities J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-08-10 Mary Girgis, Josephine Paparo, Ian Kneebone
ABSTRACT Background: Emotion regulation is a challenge for many, in particular children with intellectual disabilities. To support understanding and the development of interventions in this area it is essential to identify valid and reliable measures. Method: This systematic review aimed to identify measures that assess all five emotion regulation domains as described by the process model of emotion
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A process of decision-making support: Exploring supported decision-making practice in Canada J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-08-05 Michelle Browning, Christine Bigby, Jacinta Douglas
ABSTRACT Background: Canada was the first country to develop legal mechanisms that allow for supported decision making, and little research has explored how decision making is supported in this context. This research aimed to understand how seven people with intellectual disabilities, living in two Canadian provinces, were supported with their decision making. Method: The research used constructivist
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COVID-19 and people with intellectual disabilities J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-05-12 Jennifer Clegg
(2020). COVID-19 and people with intellectual disabilities. Journal of Intellectual & Developmental Disability: Vol. 45, No. 3, pp. 203-203.
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First call for papers for JIDD issue 1, 2022: European approaches to intellectual disability J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-07-09
(2020). First call for papers for JIDD issue 1, 2022: European approaches to intellectual disability. Journal of Intellectual & Developmental Disability: Vol. 45, No. 3, pp. 303-303.
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Psychomotor, cognitive, and socio-emotional developmental profiles of children with Rubinstein-Taybi Syndrome and a severe intellectual disability J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-07-09 Emmanuelle Taupiac, Didier Lacombe, Eric Thiébaut, Julien Van-Gils, Grégory Michel, Patricia Fergelot, Jean-Louis Adrien
ABSTRACT Background: Rubinstein-Taybi syndrome (RSTS) is a multiple congenital anomaly syndrome characterised by several typical somatic characteristics and by developmental disabilities with various degrees of severity. Focusing on children with RSTS, the aim of this study was to describe their psychomotor, cognitive, and socio-emotional developmental profiles. Method: Twenty-three children with RSTS
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Assessment of challenging behaviours with the Nisonger Child Behavior Rating Form: Agreement/disagreement between frequency and severity ratings J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-06-25 Yasmin Farage Makhluf, Alice Bacherini, Sandro Elisei, Marc J. Tassé, Giulia Balboni
Background: The Nisonger Child Behavior Rating Form (NCBRF) allows for the assessment of frequency and severity of challenging behaviours of individuals with ID with one combined rating. However, frequency and severity rating of challenging behaviours may be in disagreement. Therefore, the efficacy of frequency and severity independent ratings for each NCBRF item was investigated. Method: Professional
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Prevalence and risk factors of choking in older adults with intellectual disability: Results from a national cross-sectional study J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-06-24 Beatrice Manduchi, Margaret Walshe, Éilish Burke, Rachael Carroll, Philip McCallion, Mary McCarron
Background: Choking is a serious and under-recognised condition for adults with intellectual disability (ID), with health, psychological and potentially fatal consequences. This study aims to determine the prevalence and risk factors for choking in a population-based sample of older adults with ID. Method: 597 adults with ID (mean age: 60 years old; SD = 8) were selected as part of The Intellectual
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Dedifferentiation and people with intellectual disabilities in the Australian National Disability Insurance Scheme: Bringing research, politics and policy together J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-06-24 Christine Bigby
ABSTRACT Background: Dedifferentiated policy treats adults with intellectual disabilities as part of the larger group of people with disabilities. The implications of the dedifferentiated National Disability Insurance Scheme (NDIS) for adults with intellectual disabilities are explored. Methods: Analysis of peer reviewed and grey literature between 2014 and 2020 about design of the NDIS and outcomes
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What is “fair and reasonable”? Norms and strategies guiding the distribution of assets by testators who have an adult child with intellectual disability J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-06-21 Jill Wilson, Cheryl Tilse, Ben White, Linda Rosenman
Background: Parents making a will most commonly distribute assets evenly to adult children. How parents of an adult child with an intellectual disability use wills to plan for future care and support has had limited policy, practice and research attention. Method: This research reports on the perceptions of 20 parents regarding the impact of the needs of their child with disability on estate planning
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Ensuring the reproductive rights of women with intellectual disability J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-06-10 Nicole Agaronnik, Elizabeth Pendo, Tara Lagu, Christene DeJong, Aixa Perez-Caraballo, Lisa I. Iezzoni
ABSTRACT Background: Women with intellectual disability experience disparities in sexual and reproductive health care services. Methods: To explore perceptions of caring for persons with disability, including individuals with intellectual disability, we conducted open-ended individual interviews with 20 practising physicians and three video-based focus group interviews with an additional 22 practising
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Pregnancies and births in women with Down syndrome – An analysis based on the Medical Statistics of Swiss Hospitals J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-06-09 Dagmar Orthmann Bless, Verena Hofmann
ABSTRACT Background: More knowledge about the particularities of pregnancy and childbirth in women with Down syndrome (DS) might improve medical and psychosocial support for expectant mothers. Method: In a sample of 351 pregnancies, women with DS were compared with women with other forms of intellectual disabilities (ID) and women without ID with regard to pregnancy outcome, characteristics of hospitalisation
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Dedifferentiation and difference: People with profound intellectual and multiple disabilities and the National Disability Insurance Scheme (NDIS) J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-06-01 Michelle King
ABSTRACT Dedifferentiation represents the merging of the wider “intellectual disability” category with the broader one of “disability” generally; a product of the ascendance of the social model of disability. The recent re-emergence of the significance of impairment and embodiment in disability theory re-establishes the importance of situated experience and reinserts realities of difference in the
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eHealth in support for daily functioning of people with intellectual disability: Views of service users, relatives, and professionals on both its advantages and disadvantages and its facilitating and impeding factors J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2020-04-19 Noud Frielink, Cathelijn E. M. Oudshoorn, Petri J. C. M. Embregts
ABSTRACT Background: The use of eHealth in support for daily functioning of service users with intellectual disability (ID) is a rather unexplored domain. Therefore, the current study identified the a) level of familiarity, b) advantages/disadvantages, and c) facilitating/impeding factors for the use of eHealth in support for daily functioning of people with ID according to service users, relatives
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Clinicians’ retrospective perceptions of failure to detect sexual abuse in a young man with autism and mild intellectual disability J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2019-11-14 Arvid Nikolai Kildahl, Sissel Berge Helverschou, Hanne Weie Oddli
Background: Individuals with intellectual disability (ID) and autism spectrum disorder (ASD) are at increased risk of sexual abuse. However, little is known about facilitating detection and disclosure. One year after discharge from a specialised psychiatric ward, a young man with mild ID and ASD disclosed previously unknown sexual abuse. The aim of the present study was to explore clinicians’ perceptions
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What is the capability of the Australian mental health workforce to meet the needs of people with an intellectual disability and co-occurring mental ill health? J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2019-09-05 Janelle Weise, Karen R. Fisher, Beth Turner, Julian N. Trollor
Background: People with intellectual disability experience elevated rates of mental ill health. Yet they face barriers in accessing appropriate individualised mental health care. Further research is required to learn about the capability of the mental health workforce to facilitate access and participation in quality mental health care for this group. Methods: Thirty-three Australian intellectual disability
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Physicians’ perceptions on Quality of Life of persons with profound intellectual and multiple disabilities: A qualitative study J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2019-03-27 Appolonia M. Nieuwenhuijse, Dick L. Willems, Erik Olsman
ABSTRACT Background Quality of Life (QoL) may be a factor in physicians’ decisions on treatment of persons with Profound Intellectual and Multiple Disabilities (PIMD). We explored the perception of physicians on the QoL of persons with PIMD. Method We conducted semi-structured interviews with seven experienced physicians treating persons with PIMD, thematically analysed them and identified clusters
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Placement decisions of families co-residing with an adult relative with an intellectual disability J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2019-07-14 Jillian M. Grey, Vasiliki Totsika, Richard P. Hastings
Background Placement behaviours of families of adults with intellectual disabilities has received little or no attention of researches to date. Methods A prospective design was adopted to examine changes in placement decisions of 75 family carers over a 12-month period. Factors associated with changes were also examined. Results Over 12 months, 30 families moved closer to considering an out of home
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Factors associated with long-term use of restrictive interventions J. Intellect. Dev. Disabil. (IF 1.148) Pub Date : 2019-09-15 Ben Richardson, Lynne S. Webber, Frank Lambrick
Background Despite agreement that restrictive intervention (RI) should only be used as a last resort and for as long as required, little is known about long-term RI among individuals with a disability. This study examines long-term RI use. Method From the Restrictive Intervention Data System dataset from Victoria, Australia, a cohort of 1,414 people reported to be restrained or secluded between July