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Sample records for delay intellectual disability

  1. Mutations in HIVEP2 are associated with developmental delay, intellectual disability, and dysmorphic features

    NARCIS (Netherlands)

    Steinfeld, Hallie; Cho, Megan T.; Retterer, Kyle; Person, Rick; Schaefer, G. Bradley; Danylchuk, Noelle; Malik, Saleem; Wechsler, Stephanie Burns; Wheeler, Patricia G.; van Gassen, Koen L I; Terhal, P. A.; Verhoeven, Virginie J M; van Slegtenhorst, Marjon A.; Monaghan, Kristin G.; Henderson, Lindsay B.; Chung, Wendy K.

    Human immunodeficiency virus type I enhancer binding protein 2 (HIVEP2) has been previously associated with intellectual disability and developmental delay in three patients. Here, we describe six patients with developmental delay, intellectual disability, and dysmorphic features with de novo likely

  2. The Diagnostic Yield of Array Comparative Genomic Hybridization Is High Regardless of Severity of Intellectual Disability/Developmental Delay in Children.

    Science.gov (United States)

    D'Arrigo, Stefano; Gavazzi, Francesco; Alfei, Enrico; Zuffardi, Orsetta; Montomoli, Cristina; Corso, Barbara; Buzzi, Erika; Sciacca, Francesca L; Bulgheroni, Sara; Riva, Daria; Pantaleoni, Chiara

    2016-05-01

    Microarray-based comparative genomic hybridization is a method of molecular analysis that identifies chromosomal anomalies (or copy number variants) that correlate with clinical phenotypes. The aim of the present study was to apply a clinical score previously designated by de Vries to 329 patients with intellectual disability/developmental disorder (intellectual disability/developmental delay) referred to our tertiary center and to see whether the clinical factors are associated with a positive outcome of aCGH analyses. Another goal was to test the association between a positive microarray-based comparative genomic hybridization result and the severity of intellectual disability/developmental delay. Microarray-based comparative genomic hybridization identified structural chromosomal alterations responsible for the intellectual disability/developmental delay phenotype in 16% of our sample. Our study showed that causative copy number variants are frequently found even in cases of mild intellectual disability (30.77%). We want to emphasize the need to conduct microarray-based comparative genomic hybridization on all individuals with intellectual disability/developmental delay, regardless of the severity, because the degree of intellectual disability/developmental delay does not predict the diagnostic yield of microarray-based comparative genomic hybridization. © The Author(s) 2015.

  3. What is an Intellectual Disability?

    Science.gov (United States)

    ... for Educators Search English Español What Is an Intellectual Disability? KidsHealth / For Kids / What Is an Intellectual Disability? ... learning and becoming an independent person. What Causes Intellectual Disabilities? Intellectual disabilities happen because the brain gets injured ...

  4. Segregation of a 4p16.3 duplication with a characteristic appearance, macrocephaly, speech delay and mild intellectual disability in a 3-generation family

    DEFF Research Database (Denmark)

    Schönewolf-Greulich, Bitten; Ravn, Kirstine; Hamborg-Petersen, Bente

    2013-01-01

    delay/intellectual disability. In contrast small duplications of 4p are rare but with the advent of microarray techniques a few cases have been reported in recent years. Here we describe a 3 Mb duplication at 4p16.3 segregating with a characteristic phenotype, macrocephaly, speech delay and mild...

  5. Mothers with intellectual disabilities

    OpenAIRE

    Kolarič, Sandra

    2015-01-01

    For the theoretical part of this master's thesis foreign literature and finished foreign researches were studied. In this part of the thesis the characteristics of mothers with intellectual disabilities; factors, which influence the success of carrying out their mother role; and the rights of people with intellectual disabilities as parents, all based on Slovene legislation are included. We listed reasons for limiting reproduction for women with intellectual disabilities and issues concerning...

  6. Understanding intellectual disability through RASopathies.

    Science.gov (United States)

    San Martín, Alvaro; Pagani, Mario Rafael

    2014-01-01

    Intellectual disability, commonly known as mental retardation in the International Classification of Disease from World Health Organization, is the term that describes an intellectual and adaptive cognitive disability that begins in early life during the developmental period. Currently the term intellectual disability is the preferred one. Although our understanding of the physiological basis of learning and learning disability is poor, a general idea is that such condition is quite permanent. However, investigations in animal models suggest that learning disability can be functional in nature and as such reversible through pharmacology or appropriate learning paradigms. A fraction of the cases of intellectual disability is caused by point mutations or deletions in genes that encode for proteins of the RAS/MAP kinase signaling pathway known as RASopathies. Here we examined the current understanding of the molecular mechanisms involved in this group of genetic disorders focusing in studies which provide evidence that intellectual disability is potentially treatable and curable. The evidence presented supports the idea that with the appropriate understanding of the molecular mechanisms involved, intellectual disability could be treated pharmacologically and perhaps through specific mechanistic-based teaching strategies. Copyright © 2014 Elsevier Ltd. All rights reserved.

  7. Everyday Memory and Working Memory in Adolescents with Mild Intellectual Disability

    Science.gov (United States)

    Van der Molen, M. J.; Van Luit, J. E. H.; Van der Molen, Maurits W.; Jongmans, Marian J.

    2010-01-01

    Everyday memory and its relationship to working memory was investigated in adolescents with mild intellectual disability and compared to typically developing adolescents of the same age (CA) and younger children matched on mental age (MA). Results showed a delay on almost all memory measures for the adolescents with mild intellectual disability…

  8. Understanding Intellectual Disability through Rasopathies

    OpenAIRE

    Alvaro, San Martín; Rafael, Pagani Mario

    2014-01-01

    Intellectual disability, commonly known as mental retardation in the International Classification of Disease from World Health Organization, is the term that describes an intellectual and adaptive cognitive disability that begins in early life during the developmental period. Currently the term intellectual disability is the preferred one. Although our understanding of the physiological basis of learning and learning disability is poor, a general idea is that such condition is quite permanent...

  9. Confirmation of an ARID2 defect in SWI/SNF-related intellectual disability.

    Science.gov (United States)

    Van Paemel, Ruben; De Bruyne, Pauline; van der Straaten, Saskia; D'hondt, Marleen; Fränkel, Urlien; Dheedene, Annelies; Menten, Björn; Callewaert, Bert

    2017-11-01

    We present a 4-year-old girl with delayed neuromotor development, short stature of prenatal onset, and specific behavioral and craniofacial features harboring an intragenic deletion in the ARID2 gene. The phenotype confirmed the major features of the recently described ARID2-related intellectual disability syndrome. However, our patient showed overlapping features with Nicolaides-Baraitser syndrome and Coffin-Siris syndrome, providing further arguments to reclassify these disorders as "SWI/SNF-related intellectual disability syndromes." © 2017 Wiley Periodicals, Inc.

  10. From "Learning Disability to Intellectual Disability"--Perceptions of the Increasing Use of the Term "Intellectual Disability" in Learning Disability Policy, Research and Practice

    Science.gov (United States)

    Cluley, Victoria

    2018-01-01

    Background: The term "intellectual disability" is increasingly used to refer to people with learning disabilities in British learning disability policy, practice and research. This change is undoubtedly a reflection of the changing international context. The inclusion of the term "intellectual disability" has been particularly…

  11. Disability impact and coping in mothers of children with intellectual disabilities and multiple disabilities.

    Science.gov (United States)

    Kishore, M Thomas

    2011-12-01

    Understanding the disability impact on parenting and caregiving is important for intervention. The present study was designed to understand the differences in perceived disability impact and related coping in mothers having children with intellectual disabilities alone compared to those having children with intellectual disabilities and additional disabilities. Accordingly, 30 mothers of children with intellectual disabilities and 30 mothers of children with intellectual and additional disabilities were assessed for disability impact and coping. Group differences for disability impact were present in specific domains but not overall. Despite variations in coping pattern, both positive and negative coping strategies were observed in both groups. The results may imply that the impact of intellectual disability is so pervasive that except in certain domains mothers may not perceive the further impact of additional disabilities. Positive coping does not rule out negative coping strategies. These findings have specific relevance to service delivery in a cultural context.

  12. Beaulieu-Boycott-Innes syndrome: an intellectual disability syndrome with characteristic facies.

    Science.gov (United States)

    Casey, Jillian; Jenkinson, Allan; Magee, Alex; Ennis, Sean; Monavari, Ahmad; Green, Andrew; Lynch, Sally A; Crushell, Ellen; Hughes, Joanne

    2016-10-01

    We report a female child from an Irish Traveller family presenting with severe intellectual disability, dysmorphic features, renal anomalies, dental caries and cyclical vomiting. Current health issues include global developmental delay, mild concentric left ventricular hypertrophy, dental malocclusion and caries and a single duplex left kidney. The proband and her mother also have multiple epiphyseal dysplasia. Whole-exome sequencing was performed to identify the underlying genetic cause. DNA from the proband was enriched with the Agilent Sure Select v5 Exon array and sequenced on an Illumina HiSeq. Rare homozygous variants were prioritized. Whole-exome sequencing identified three linked homozygous missense variants in THOC6 (c.298T>A, p.Trp100Arg; c.700G>C, p.Val234Leu; c.824G>A, p.Gly275Asp) as the likely cause of this child's intellectual disability syndrome, resulting in a molecular diagnosis of Beaulieu-Boycott-Innes syndrome (BBIS). This is the first report of BBIS in Europe. BBIS has been reported previously in two Hutterite families and one Saudi family. A review of all patients to date shows a relatively homogenous phenotype. Core clinical features include low birth weight with subsequent growth failure, short stature, intellectual disability with language delay, characteristic facies, renal anomalies and dental malocclusion with caries. Some patients also have cardiac defects. All patients show characteristic dysmorphic facial features including a tall forehead with high anterior hairline and deep-set eyes with upslanting palpebral fissures. The coexistence of intellectual disability together with these characteristic facies should provide a diagnostic clue for BBIS during patient evaluation.

  13. The Sexuality of Adults with Intellectual Disability in Poland.

    Science.gov (United States)

    Kijak, Remigiusz

    2013-06-01

    Sexuality is one of the most important aspects of human life that relates to sex, one's identification, sexual role, sexual preferences, eroticism, pleasure and intimacy. It fulfils such functions as procreative, hedonistic and relationship-building as well as constitutes an integral part of human's personality. The sexuality of people with intellectual disability is a special case - both from medical, pedagogical, psychological and ethical point of view. Little available research shows that it may become a significant factor that modifies their psychological and sexual functioning. The basic poll involved altogether 133 people with mild intellectual disability. The work was carried out in 11 schools and special institutions of three provinces in Poland: kujawsko - pomorskie, wielkopolskie and dolnośląskie (provinces of Kujavy and Pomerania, Great Poland and Lower Silesia) The respondents qualified to take part in the poll constituted a very uniform group - homogenous as regards their age of 18-25 as well as IQ level that was average for the people with higher degree of intellectual disability (HDID). Their age was of importance as in that life period one can observe the formation of first partner relationships with the clear aim of establishing a family. It is accompanied by a quick development of sexual desire and taking up various forms of sexual activity. People with intellectual disability don't form a homogenous group as regards their psychological and sexual development. In this group, one can observe both different forms of clinical mental handicap which definitely affects the whole process of sexual development. The sexual development is delayed by an average period of 3 years. The people with intellectual disability take up mostly autoerotic behaviour whereas partner relationships wthin that group are more seldom. The phenomenon of sexuality of people with higher degree of intellectual disability is an issue that needs further constant analysis. The

  14. Anesthesia for intellectually disabled

    Directory of Open Access Journals (Sweden)

    Kapil Chaudhary

    2017-01-01

    Full Text Available Anesthetizing an intellectually disabled patient is a challenge due to lack of cognition and communication which makes perioperative evaluation difficult. The presence of associated medical problems and lack of cooperation further complicates the anesthetic technique. An online literature search was performed using keywords anesthesia, intellectually disabled, and mentally retarded and relevant articles were included for review. There is scarcity of literature dealing with intellectually disabled patients. The present review highlights the anesthetic challenges, their relevant evidence-based management, and the role of caretakers in the perioperative period. Proper understanding of the associated problems along with a considerate and unhurried approach are the essentials of anesthetic management of these patients.

  15. Children with intellectual disability and hospice utilization.

    Science.gov (United States)

    Lindley, Lisa C; Colman, Mari Beth; Meadows, John T

    2017-02-01

    Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital conditions, and comorbidities. Yet, little is known about hospice care for children with intellectual disability. The purpose of this study was to explore the relationship between intellectual disability and hospice utilization. Additionally, we explored whether intellectual disability combined with motor dysfunction, progressive congenital conditions, and comorbidities influenced pediatric hospice utilization. Using a retrospective cohort design and data from the 2009 to 2010 California Medicaid claims files, we conducted a multivariate analysis of hospice utilization. This study shows that intellectual disability was negatively related to hospice enrollment and length of stay. We also found that when children had both intellectual disability and comorbidities, there was a positive association with enrolling in hospice care. A number of clinical implications can be drawn from the study findings that hospice and palliative care nurses use to improve their clinical practice of caring for children with ID and their families at end of life.

  16. Emerging role of the KCNT1 Slack channel in intellectual disability.

    Science.gov (United States)

    Kim, Grace E; Kaczmarek, Leonard K

    2014-01-01

    The sodium-activated potassium KNa channels Slack and Slick are encoded by KCNT1 and KCNT2, respectively. These channels are found in neurons throughout the brain, and are responsible for a delayed outward current termed I KNa. These currents integrate into shaping neuronal excitability, as well as adaptation in response to maintained stimulation. Abnormal Slack channel activity may play a role in Fragile X syndrome, the most common cause for intellectual disability and inherited autism. Slack channels interact directly with the fragile X mental retardation protein (FMRP) and I KNa is reduced in animal models of Fragile X syndrome that lack FMRP. Human Slack mutations that alter channel activity can also lead to intellectual disability, as has been found for several childhood epileptic disorders. Ongoing research is elucidating the relationship between mutant Slack channel activity, development of early onset epilepsies and intellectual impairment. This review describes the emerging role of Slack channels in intellectual disability, coupled with an overview of the physiological role of neuronal I KNa currents.

  17. A Desire for Love: Considerations on Sexuality and Sexual Education of People With Intellectual Disability in Poland.

    Science.gov (United States)

    Kijak, Remigiusz J

    2011-03-01

    This article is intended to attract public attention to the fact that people with intellectual disability, despite their delayed sexual development, still remain sexual beings, which is connected with many individual and social consequences. The empirical data collected in this work provides knowledge about biological and psychological conditioning of sexual development of individuals with intellectual disability. However, the problem of sexuality for this population should be further analyzed. One should also think about the possibility of supporting the psychological and sexual development of people with more severe intellectual disability.

  18. [Barcelona Test for Intellectual Disability: a new instrument for the neuropsychological assessment of adults with intellectual disability].

    Science.gov (United States)

    Esteba-Castillo, S; Pena-Casanova, J; Garcia-Alba, J; Castellanos, M A; Torrents-Rodas, D; Rodriguez, E; Deus-Yela, J; Caixas, A; Novell-Alsina, R

    2017-05-16

    Neuropsychological assessment in individuals with intellectual disability is of utmost importance in order to determine the cognitive deficits underlying brain dysfunction and limiting intellectual functioning and adaptive behavior. However, no neuropsychological batteries in Spanish language have been created and validated for this population. To adapt the 'programa integrado de exploracion neuropsicologica-test Barcelona' and to validate the new version, the Barcelona Test for Intellectual Disability (TB-DI). To create normative data for its clinical use. The original test was modified based on data from a pilot sample of 65 individuals with intellectual disability. In order to study the psychometric properties of the TB-DI, it was administered to a sample of 170 individuals with intellectual disability and to a group of 60 individuals without it. The relevant variables for stratification of normative data were determined by means of regression models. The TB-DI was finally composed by 67 subtests grouped in eight cognitive domains and it showed good psychometric properties. Normative data were created for five groups taking into account intellectual disability level, age and acquired curricular competence. These data were organized in percentiles in a way that allows the creation of cognitive profiles in the clinical and experimental fields. The TB-DI constitutes a tool of high applicability in the population with intellectual disability. It shows adequate validity and reliability, and it has good psychometric properties. The cognitive profiles obtained by the TB-DI will provide valuable information for the treatment of adult adults with mild and moderate intellectual disability.

  19. An inexorable rise in intellectual disability?

    OpenAIRE

    Michiel Ras; Isolde Woittiez; Hetty van Kempen; Klarita Sadiraj

    2010-01-01

    Original title: Steeds meer verstandelijk gehandicapten? Demand for intellectual disability care has grown strongly in the Netherlands in recent years. Partly at the request of the Dutch Ministry of Health, Welfare and Sport, the Netherlands Institute for Social Research/SCP measured the number of people with intellectual disabilities applying for care. The results are contained in this report. Our inventory reveals that demand for intellectual disability care has risen by an average of 9% pe...

  20. Adolescents with intellectual disability and suicidal behavior.

    Science.gov (United States)

    Merrick, Joav; Merrick, Efrat; Morad, Mohammed; Kandel, Isack

    2005-09-08

    It has been assumed that impaired intellectual capacity could act as a buffer to suicidality in the population of children and adolescents with intellectual disability. The few studies that have been conducted contest this assumption and in fact the findings showed that the characteristics of suicidality in the population of children and adolescents with intellectual disability are very similar to other adolescents without intellectual disability. This paper reviews the few studies conducted and describe the symptomatology in this population.

  1. Everyday memory and working memory in adolescents with mild intellectual disability

    NARCIS (Netherlands)

    van der Molen, M.J.; van Luit, J.E.H.; van der Molen, M.W.; Jongmans, M.J.

    2010-01-01

    Everyday memory and its relationship to working memory was investigated in adolescents with mild intellectual disability and compared to typically developing adolescents of the same age (CA) and younger children matched on mental age (MA). Results showed a delay on almost all memory measures for the

  2. Research Paper: Effectiveness of Social Skills Training on Behavioral Problems in Adolescents with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Abbas Nesayan

    2016-07-01

    Conclusion This research showed that social skills training were not significantly effective on behavioral problems in adolescents with intellectual disability. Although our results were not effective, research evidence shows that people with cognitive delays (such as intellectual disability require social skill training programs that include all of their academic, career, daily life, and social skills. As social skills learning plays a role in personal and social adjustment, it is necessary to pay more attention to these skills.

  3. Age at Death in Individuals with Intellectual Disabilities.

    Science.gov (United States)

    Arvio, Maria; Salokivi, Tommi; Bjelogrlic-Laakso, Nina

    2017-07-01

    We aimed to ascertain the average age at death (AD) in the intellectual disability population for each gender and compare them to those of the general population during 1970-2012. By analysing medical records, we calculated the ADs of all deceased clients (N = 1236) of two district organizations responsible for intellectual disability services. Statistics Finland's database generated data regarding ADs of all inhabitants who had died after having resided in same district. During the follow-up, average ADs for the intellectual disability population and general population increased, and simultaneously the AD difference between these populations decreased. In the 2000s, the AD difference between the intellectual disability population and the whole population was 22 years for men (95% CI: -24 to -20) and 30 years for women (95% CI: -33 to -27). In 2000s, the mean AD of those with mild-to-moderate intellectual disability (IQ 50-69) for women and men was 56 (SD17) and 54 (SD18), and those with severe to profound intellectual disability (IQ<50), 44 (SD23) and 43 (SD21). Intellectual disability is still a considerable risk factor for early death. Among the intellectual disability population, unlike in general population, the lifespans of women and men are equal. © 2016 John Wiley & Sons Ltd.

  4. Consensus statement of the International Summit on Intellectual Disability and Dementia on valuing the perspectives of persons with intellectual disability.

    Science.gov (United States)

    Watchman, Karen; Janicki, Matthew P; Udell, Leslie; Hogan, Mary; Quinn, Sam; Beránková, Anna

    2018-01-01

    The International Summit on Intellectual Disability and Dementia covered a range of issues related to dementia and intellectual disability, including the dearth of personal reflections of persons with intellectual disability affected by dementia. This article reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from the Summit attendees and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. Systemic recommendations included reinforcing the value of the involvement of persons with intellectual disability in (a) research alongside removing barriers to inclusion posed by institutional/ethics review boards, (b) planning groups that establish supports for dementia and (c) peer support. Practice recommendations included (a) valuing personal perspectives in decision-making, (b) enabling peer-to-peer support models, (c) supporting choice in community-dwelling arrangements and (d) broadening availability of materials for persons with intellectual disability that would promote understanding of dementia.

  5. Adolescents with Intellectual Disability and Suicidal Behavior

    Directory of Open Access Journals (Sweden)

    Joav Merrick

    2005-01-01

    Full Text Available It has been assumed that impaired intellectual capacity could act as a buffer to suicidality in the population of children and adolescents with intellectual disability. The few studies that have been conducted contest this assumption, and in fact, the findings showed that the characteristics of suicidality in the population of children and adolescents with intellectual disability are very similar to other adolescents without intellectual disability. This paper reviews the few studies conducted and describe the symptomatology in this population.

  6. Mood disorders in intellectual disability.

    Science.gov (United States)

    Hurley, Anne D

    2006-09-01

    This article examines reviews and research on the diagnosis and treatment of mood disorders in people with intellectual disability published from September 2004 to December 2005. Patients with intellectual disability have limitations in verbal ability, and with increasing levels of disability may have an atypical clinical presentation. Thus, methods to diagnose mood disorders were a major research focus. Informant-rating scales and two self-report instruments provided data on thought patterns, aberrant behavior, appetite, and suicidality. Behavioral symptoms such as aggression were frequently associated with mood disorders. Pharmacotherapy and electroconvulsive therapy were found to be effective treatments. Mood disorders were frequently identified in people with intellectual disability, although suicide was still quite rare. Patients with milder levels of disability can use self-report measures and can be diagnosed using standard criteria with little modification. For those with more severe disability, diagnosis is challenging and often requires the use of residual categories. Atypical clinical presentation, including maladaptive behaviors, lent support for 'behavioral equivalent' substitutes of standard criteria. Typical pharmacological agents were effective for depression and electroconvulsive therapy for treatment-resistant bipolar disorder.

  7. Factors Affecting Placement of a Child with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Isack Kandel

    2005-01-01

    Full Text Available Parents of disabled children often face the question whether or not to keep the child at home or to place them. The choice between the two alternatives resides with the parents and various factors influence their decision. Several researchers have identified these factors, which include child-related parameters, family and parental attitudes, the influence of the social environment, and the external assistance provided to the family. In a pilot study, we attempted to isolate the main factors involved in the parental decision either to keep the child at home or place the child by examining a sample comprised of 50 parents of children suffering severe intellectual disability studying in a special education school and 48 parents of adults with intellectual disability working in sheltered workshops. Each parent filled out a questionnaire used in a study in the United States and results of the research indicated parental-related factors as the dominant factors that delayed the placement of their child in residential care; guilt feelings were the main factor.

  8. Identifying classes of persons with mild intellectual disability or borderline intellectual functioning: a latent class analysis.

    Science.gov (United States)

    Nouwens, Peter J G; Lucas, Rosanne; Smulders, Nienke B M; Embregts, Petri J C M; van Nieuwenhuizen, Chijs

    2017-07-17

    Persons with mild intellectual disability or borderline intellectual functioning are often studied as a single group with similar characteristics. However, there are indications that differences exist within this population. Therefore, the aim of this study was to identify classes of persons with mild intellectual disability or borderline intellectual functioning and to examine whether these classes are related to individual and/or environmental characteristics. Latent class analysis was performed using file data of 250 eligible participants with a mean age of 26.1 (SD 13.8, range 3-70) years. Five distinct classes of persons with mild intellectual disability or borderline intellectual functioning were found. These classes significantly differed in individual and environmental characteristics. For example, persons with a mild intellectual disability experienced fewer problems than those with borderline intellectual disability. The identification of five classes implies that a differentiated approach is required towards persons with mild intellectual disability or borderline intellectual functioning.

  9. Mutations in SPATA5 Are Associated with Microcephaly, Intellectual Disability, Seizures, and Hearing Loss

    NARCIS (Netherlands)

    Tanaka, Akemi J.; Cho, Megan T.; Millan, Francisca; Juusola, Jane; Retterer, Kyle; Joshi, Charuta; Niyazov, Dmitriy; Garnica, Adolfo; Gratz, Edward; Deardorff, Matthew; Wilkins, Alisha; Ortiz-Gonzalez, Xilma; Mathews, Katherine; Panzer, Karin; Brilstra, Eva; Van Gassen, Koen L I; Volker-Touw, Catharina M L; van Binsbergen, Ellen; Sobreira, Nara; Hamosh, Ada; McKnight, Dianalee; Monaghan, Kristin G.; Chung, Wendy K.

    2015-01-01

    Using whole-exome sequencing, we have identified in ten families 14 individuals with microcephaly, developmental delay, intellectual disability, hypotonia, spasticity, seizures, sensorineural hearing loss, cortical visual impairment, and rare autosomal-recessive predicted pathogenic variants in

  10. Genetics Home Reference: X-linked intellectual disability, Siderius type

    Science.gov (United States)

    ... Cleft Lip and Palate MalaCards: x-linked intellectual disability, siderius type March of Dimes: Cleft Lip and Cleft Palate Merck Manual Consumer Version: Intellectual Disability Orphanet: X-linked intellectual disability, Siderius type Patient ...

  11. Model of Intellectual Disability and the Relationship of Attitudes Towards the Sexuality of Persons with an Intellectual Disability.

    Science.gov (United States)

    Parchomiuk, Monika

    2013-06-01

    The following article discusses the relationship between the model of intellectual disability and the attitudes towards sexuality of people with disabilities. This correlation has been verified during the author's own research conducted on students of several medical faculties such as nursing, public health, emergency medical services and physiotherapy. Tools of the author's design have been used in the research. Likert-type scale "Perspective of intellectual disability" has been used to determine the model of disability seen from the medical (individual) or social perspective. To examine the attitudes towards sexuality two tools of the author's own design have been used: a Likert-type scale "The essence of sexuality in persons with an intellectual disability" which has been used to analyze the cognitive aspect of the attitudes, and a semantic differential with notions concerning physical and psychosocial aspects of sexuality including the affective-evaluative aspect. As expected, significant correlations have been found between the model and the attitudes both in the cognitive and the affective-evaluative aspect. Higher scores for the individual model correlated with: (a) lover scores for most aspects of sexuality of people with intellectual disability, (b) perceiving them as asexual, (c) biological determinism in the sexual sphere. The social model concurred with positive values given to sexuality of people with intellectual disability and its normalization in the sphere of its determinants and symptoms.

  12. The Relation Between Intellectual Functioning and Adaptive Behavior in the Diagnosis of Intellectual Disability.

    Science.gov (United States)

    Tassé, Marc J; Luckasson, Ruth; Schalock, Robert L

    2016-12-01

    Intellectual disability originates during the developmental period and is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. In this article, we present a brief history of the diagnostic criteria of intellectual disability for both the DSM-5 and AAIDD. The article also (a) provides an update of the understanding of adaptive behavior, (b) dispels two thinking errors regarding mistaken temporal or causal link between intellectual functioning and adaptive behavior, (c) explains that there is a strong correlational, but no causative, relation between intellectual functioning and adaptive behavior, and (d) asserts that once a question of determining intellectual disability is raised, both intellectual functioning and adaptive behavior are assessed and considered jointly and weighed equally in the diagnosis of intellectual disability. We discuss the problems created by an inaccurate statement that appears in the DSM-5 regarding a causal link between deficits in intellectual functioning and adaptive behavior and propose an immediate revision to remove this erroneous and confounding statement.

  13. Paediatric palliative care and intellectual disability-A unique context.

    Science.gov (United States)

    Duc, Jacqueline K; Herbert, Anthony Robert; Heussler, Helen S

    2017-11-01

    Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions. A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required. © 2017 John Wiley & Sons Ltd.

  14. Attitudes towards People with Disabilities--What Do People with Intellectual Disabilities Have to Say?

    Science.gov (United States)

    Corr McEvoy, Sandra; Keenan, Emer

    2014-01-01

    Attitudes towards people with intellectual disabilities have traditionally been very negative, resulting in people with intellectual disabilities being treated badly by other. This claim was explored by conducting focus groups with adults who have an intellectual disability to find out about their everyday experiences in different places and using…

  15. Autonomy Support in People with Mild-to-Borderline Intellectual Disability: Testing the Health Care Climate Questionnaire-Intellectual Disability

    Science.gov (United States)

    Frielink, Noud; Schuengel, Carlo; Embregts, Petri J. C. M.

    2018-01-01

    Background: Autonomy support in people with intellectual disability (ID) is an important yet understudied topic. Psychometrically sound instruments are lacking. This study tested the factor structure and reliability of an instrument for assessing the extent people with intellectual disability perceive their support staff as autonomy supportive.…

  16. Intellectual disability in cerebral palsy: a population-based retrospective study.

    Science.gov (United States)

    Reid, Susan M; Meehan, Elaine M; Arnup, Sarah J; Reddihough, Dinah S

    2018-04-18

    A population-based observational study design was used to describe the epidemiology of intellectual disability in cerebral palsy (CP) in terms of clinical and neuroimaging associations, and to report the impact of intellectual disability on utilization of health services and length of survival. Population CP registry data were used to retrospectively assess the frequency of intellectual disability and strength of associations between intellectual disability and mobility, epilepsy, vision, hearing, communication, and neuroimaging patterns (n=1141). Data linkage was undertaken to assess usage of hospital inpatient and emergency department services. Survival analysis was performed in a 30-year birth cohort (n=3248). Intellectual disability, present in 45% of the cohort, was associated with non-ambulation (47% vs 8%), later walking (mean 2y 7mo vs 1y 9mo), hypotonic (8% vs 1%) or dyskinetic (9% vs 5%) CP, a quadriplegic pattern of motor impairment (42% vs 5%), epilepsy (52% vs 12%), more emergency and multi-day hospital admissions, and reduced 35-year survival (96% vs 71%). Grey matter injuries (13% vs 6%), malformations (18% vs 6%), and miscellaneous neuroimaging patterns (12% vs 4%) were more common in people with intellectual disability. Intellectual disability adds substantially to the overall medical complexity in CP and may increase health and mortality disparities. Cerebral maldevelopments and grey matter injuries are associated with higher intellectual disability rates. Health care is more 'crisis-driven' and 'reactive' in children with co-occurring intellectual disability. Length of survival is reduced in individuals with CP and co-occurring intellectual disability. © 2018 Mac Keith Press.

  17. Genetics Home Reference: alpha thalassemia X-linked intellectual disability syndrome

    Science.gov (United States)

    ... Alpha thalassemia X-linked intellectual disability syndrome Alpha thalassemia X-linked intellectual disability syndrome Printable PDF Open ... to view the expand/collapse boxes. Description Alpha thalassemia X-linked intellectual disability syndrome is an inherited ...

  18. Inhibitory control as a factor of adaptive functioning of children with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Gligorović Milica

    2012-01-01

    Full Text Available Bearing in mind that the adaptive behaviour is one of the defining parameters of intellectual disability, determining of the influence of inhibitory control on adaptive functioning in children with mild intellectual disability was defined as a basic aim of this research. The sample covered 95 children with mild intellectual disability (MID, of both genders, from 10 to 14 years of age. By analysis of the data of schools' pedagogical-psychological departments, data on age and intellectual abilities of participants were collected. Inhibitory control was estimated by Go no Go task, consisted of Conflict Response and Response Delay sets. Adaptive skills data were gained on the basis of a standardized interview with special education teachers, by applying of AAMR Scale of adaptive functioning. On the basis of factor analysis, Scale scores were grouped in five factors: Personal independence, Social Independence, Personal and Social Responsibility, Social Adaptability and Personal Adaptability. Significance of relations among the observed variables was established by Pearson's correlation coefficient, by partial correlation coefficient and multifactorial variance analysis. Based on the analysis of results a statistically significant relationship between errors in the execution of tasks that belong to the set of conflict motor responses and adaptive functioning (p≤0.000 was established. The relationship between errors that belong to the set of the response delay, and adaptive functioning is not statistically significant (p=0.324. Inhibition of the interference response is a significant factor of practical (partial η2=0.227, conceptual (partial η2=0.341 and social (partial η2=0.131 adaptive skills, while the response delay is significantly associated with the conceptual skills (p=0.029 only. Inhibitory control did not prove itself a significant factor in behaviour problems of externalizing and internalized type.

  19. The Relation between Intellectual Functioning and Adaptive Behavior in the Diagnosis of Intellectual Disability

    Science.gov (United States)

    Tassé, Marc J.; Luckasson, Ruth; Schalock, Robert L.

    2016-01-01

    Intellectual disability originates during the developmental period and is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. In this article, we present a brief history of the diagnostic criteria of intellectual disability for both…

  20. Video Modeling to Teach Social Safety Skills to Young Adults with Intellectual Disability

    Science.gov (United States)

    Spivey, Corrine E.; Mechling, Linda C.

    2016-01-01

    This study evaluated the effectiveness of video modeling with a constant time delay procedure to teach social safety skills to three young women with intellectual disability. A multiple probe design across three social safety skills (responding to strangers who: requested personal information; requested money; and entered the participant's…

  1. Prevalence and outcomes of heart transplantation in children with intellectual disability.

    Science.gov (United States)

    Wightman, Aaron; Bartlett, Heather L; Zhao, Qianqian; Smith, Jodi M

    2017-03-01

    Heart transplantation in children with intellectual disability is a controversial issue. We sought to describe the prevalence and outcomes of heart transplantation in children with intellectual disability and hypothesized that recipients with intellectual disability have comparable short-term outcomes compared to recipients without intellectual disability. We performed a retrospective cohort analysis of children receiving a first heart-alone transplant in the UNOS STAR database from 2008 to 2013. Recipients with intellectual disability were compared to those without using chi-square tests. Kaplan-Meier curves were constructed for patient and graft survival. Cox proportional hazard models were used to estimate the association between intellectual disability and graft failure and patient survival. Over the study period, 107 children with intellectual disability underwent initial heart transplantation, accounting for 8.9% of first pediatric heart transplants (total=1204). There was no difference in the incidence of acute rejection between groups in the first year after transplant. Mean functional status scores at follow-up improved in both groups after transplantation, but tended to be lower among children with intellectual disability than children without. Log-rank tests did not suggest significant differences in graft survival between those with and without intellectual disability during the first 4 years following transplantation. Children with intellectual disability constitute a significant portion of total heart transplants with short-term outcomes comparable to children without intellectual disability. © 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

  2. Expanding Opportunities for Students with Intellectual Disability

    Science.gov (United States)

    Giangreco, Michael F.

    2017-01-01

    Research and experience tell us a great deal about how to successfully educate students with intellectual disability, but unfortunately this knowledge remains underutilized and inconsistently applied, writes researcher Michael F. Giangreco. Students with intellectual disability who have virtually identical profiles but live in different locales…

  3. Interrogated with Intellectual Disabilities: The Risks of False Confession.

    Science.gov (United States)

    Schatz, Samson J

    2018-02-01

    False confessions happen. At least 245 people have been exonerated from convictions in cases featuring confessions that were simply not true. Confessions offer a narrative that allows law enforcement, and society in general, to neatly resolve cases with apparent clarity and closure. And yet the pressures officers place on suspects to provide that closure weigh disproportionately on the vulnerable, including individuals with intellectual disabilities. These individuals are disadvantaged at every step of the custodial interrogation, and they face heightened risks of falsely confessing. Moreover, the principal judicial safeguards against false confessions--assessing a suspect's Miranda waiver and determining whether a confession was voluntarily given within the bounds of the Fourteenth Amendment’s Due Process Clause--provide little protection for the innocent with intellectual disabilities. Few pieces of scholarship focus specifically on the heightened risks faced by individuals with intellectual disabilities throughout the process of police interrogation. This Note describes the various ways these individuals are disadvantaged. And it offers an additional data point illustrating the vulnerability of people with intellectual disabilities. This Note analyzes the 245 individuals (as of June 2, 2017) on the National Registry of Exonerations who have falsely confessed. Over one-quarter of them display indicia of intellectual disability. This percentage dwarfs the prevalence of people with intellectual disabilities in the general population and even exceeds most estimates of the proportion of the prison population suffering from intellectual disabilities. This Note concludes with several policy and doctrinal suggestions to better protect individuals with intellectual disabilities from the risks of false confession.

  4. Sibling advocates of people with intellectual disabilities.

    Science.gov (United States)

    Ying Li, Eria Ping

    2006-06-01

    The aim of this study was to examine the experience of the first generation of sibling advocates in Hong Kong. A qualitative approach was adopted and six sibling advocates of people with intellectual disabilities from one non-government organization were interviewed. Data were analyzed using a constant comparative method and content analysis. Findings revealed that the six participants were reactive in the process of taking up the caregiver responsibility and they performed three functions: to advocate for more service provision, to improve service quality, and to facilitate communication between individual service units and family members of people with intellectual disabilities. All of the participants expressed that they needed support from service providers when they tried to function as the sibling advocates. Strategies to promote the involvement of siblings of people with intellectual disabilities as advocates are discussed and it is expected that more siblings of people with intellectual disabilities will be supported to have a higher level of involvement in advocacy.

  5. Intellectual disability and the prison setting

    Directory of Open Access Journals (Sweden)

    V. Tort

    2016-06-01

    Full Text Available Introduction: The prevalence of intellectual disability (ID in the prison setting has scarcely been studied. Although some approximations or estimates regarding people with intellectual disabilities have been performed in Spain, there is little in the way of reliable data. Objectives: 1 To determine the prevalence of ID in a sample population in the residential modules of a Spanish prison, 2 Obtain data on the prevalence of ID in prison psychiatric units and hospitals. Methods: 1 A TONI II test was performed on a sub-sample (n = 398 of a prevalence study in Spanish prisons33 to identify inmates with intellectual disabilities. 2 We reviewed the reports of the psychiatric department of Parc Sanitari Sant Joan de Deu to establish the diagnosis at discharge of patients with a primary diagnosis of intellectual disability 3 Data from the Directorate General of Prisons on the prevalence of ID in Prison Psychiatric Hospitals was reviewed. Results: The data obtained from the TONI II test found 3.77% of the study population has an IQ below 70, and 7.54 % has a borderline IQ rate. Assessment of penitentiary psychiatric hospitalization data showed these figures to be higher. Conclusions: The data from a Spanish prison population showed that ID levels were higher than those in the community, especially amongst prisoners requiring specialized psychiatric care. What is also evident is that adequate resources are required in prisons and in the community to provide better care for people with intellectual disabilities who are in the pathway of the criminal justice system.

  6. Autonomy support in people with mild to borderline intellectual disability : Testing the Health Care Climate Questionnaire-Intellectual Disability (HCCQ-ID)

    NARCIS (Netherlands)

    Frielink, N.; Schuengel, C.; Embregts, P.J.C.M.

    2017-01-01

    Background Autonomy support in people with intellectual disability (ID) is an important yet understudied topic. Psychometrically sound instruments are lacking. This study tested the factor structure and reliability of an instrument for assessing the extent people with intellectual disability

  7. Sexual health for people with intellectual disability.

    Science.gov (United States)

    Eastgate, Gillian

    2008-01-01

    People with intellectual disability experience the same range of sexual needs and desires as other people. However, they experience many difficulties meeting their needs. They may be discouraged from relieving sexual tension by masturbating. They face a high risk of sexual abuse. They are likely not to be offered the full range of choices for contraception and sexual health screening. Poor education and social isolation may increase their risk of committing sexual offences. However, with appropriate education and good social support, people with intellectual disability are capable of safe, constructive sexual expression and healthy relationships. Providing such support is an essential part of supporting people with intellectual disability.

  8. Twenty-Five Year Survival of Children with Intellectual Disability in Western Australia.

    Science.gov (United States)

    Bourke, Jenny; Nembhard, Wendy N; Wong, Kingsley; Leonard, Helen

    2017-09-01

    To investigate survival up to early adulthood for children with intellectual disability and compare their risk of mortality with that of children without intellectual disability. This was a retrospective cohort study of all live births in Western Australia between January 1, 1983 and December 31, 2010. Children with an intellectual disability (n = 10 593) were identified from the Western Australian Intellectual Disability Exploring Answers Database. Vital status was determined from linkage to the Western Australian Mortality database. Kaplan-Meier product limit estimates and 95% CIs were computed by level of intellectual disability. Hazard ratios (HRs) and 95% CIs were calculated from Cox proportional hazard regression models adjusting for potential confounders. After adjusting for potential confounders, compared with those without intellectual disability, children with intellectual disability had a 6-fold increased risk of mortality at 1-5 years of age (adjusted HR [aHR] = 6.0, 95%CI: 4.8, 7.6), a 12-fold increased risk at 6-10 years of age (aHR = 12.6, 95% CI: 9.0, 17.7) and a 5-fold increased risk at 11-25 years of age (aHR = 4.9, 95% CI: 3.9, 6.1). Children with severe intellectual disability were at even greater risk. No difference in survival was observed for Aboriginal children with intellectual disability compared with non-Aboriginal children with intellectual disability. Although children with intellectual disability experience higher mortality at all ages compared with those without intellectual disability, the greatest burden is for those with severe intellectual disability. However, even children with mild to moderate intellectual disability have increased risk of death compared with unaffected children. Copyright © 2017 Elsevier Inc. All rights reserved.

  9. Is There Really a Difference? Distinguishing Mild Intellectual Disability from "Similar" Disability Categories

    Science.gov (United States)

    Bouck, Emily C.; Satsangi, Rajiv

    2015-01-01

    Students with mild intellectual disability generally garner less individual attention in research, as they are often aggregated with students with moderate and severe intellectual disability or students with other high incidence disabilities. This study used the National Longitudinal Transition Study-2 (NLTS2) to look at the personal…

  10. Staffs' documentation of participation for adults with profound intellectual disability or profound intellectual and multiple disabilities.

    Science.gov (United States)

    Talman, Lena; Gustafsson, Christine; Stier, Jonas; Wilder, Jenny

    2017-06-21

    This study investigated what areas of International Classification of Functioning, Disability and Health were documented in implementation plans for adults with profound intellectual disability or profound intellectual and multiple disabilities with focus on participation. A document analysis of 17 implementation plans was performed and International Classification of Functioning, Disability and Health was used as an analytic tool. One hundred and sixty-three different codes were identified, especially in the components Activities and participation and Environmental factors. Participation was most frequently coded in the chapters Community, social and civic life and Self-care. Overall, the results showed that focus in the implementation plans concerned Self-care and Community, social and civic life. The other life areas in Activities and participation were seldom, or not at all, documented. A deeper focus on participation in the implementation plans and all life areas in the component Activities and participation is needed. It is important that the documentation clearly shows what the adult wants, wishes, and likes in everyday life. It is also important to ensure that the job description for staff contains both life areas and individual preferences so that staff have the possibility to work to fulfill social and individual participation for the target group. Implications for rehabilitation There is a need for functioning working models to increase participation significantly for adults with profound intellectual disability or profound intellectual and multiple disabilities. For these adults, participation is achieved through the assistance of others and support and services carried out must be documented in an implementation plan. The International Classification of Functioning, Disability and Health can be used to support staff and ensure that information about the most important factors in an individual's functioning in their environment is not omitted in

  11. Central nervous system medication use in older adults with intellectual disability: Results from the successful ageing in intellectual disability study.

    Science.gov (United States)

    Chitty, Kate M; Evans, Elizabeth; Torr, Jennifer J; Iacono, Teresa; Brodaty, Henry; Sachdev, Perminder; Trollor, Julian N

    2016-04-01

    Information on the rates and predictors of polypharmacy of central nervous system medication in older people with intellectual disability is limited, despite the increased life expectancy of this group. This study examined central nervous system medication use in an older sample of people with intellectual disability. Data regarding demographics, psychiatric diagnoses and current medications were collected as part of a larger survey completed by carers of people with intellectual disability over the age of 40 years. Recruitment occurred predominantly via disability services across different urban and rural locations in New South Wales and Victoria. Medications were coded according to the Monthly Index of Medical Specialties central nervous system medication categories, including sedatives/hypnotics, anti-anxiety agents, antipsychotics, antidepressants, central nervous system stimulants, movement disorder medications and anticonvulsants. The Developmental Behaviour Checklist for Adults was used to assess behaviour. Data were available for 114 people with intellectual disability. In all, 62.3% of the sample was prescribed a central nervous system medication, with 47.4% taking more than one. Of those who were medicated, 46.5% had a neurological diagnosis (a seizure disorder or Parkinson's disease) and 45.1% had a psychiatric diagnosis (an affective or psychotic disorder). Linear regression revealed that polypharmacy was predicted by the presence of neurological and psychiatric diagnosis, higher Developmental Behaviour Checklist for Adults scores and male gender. This study is the first to focus on central nervous system medication in an older sample with intellectual disability. The findings are in line with the wider literature in younger people, showing a high degree of prescription and polypharmacy. Within the sample, there seems to be adequate rationale for central nervous system medication prescription. Although these data do not indicate non-adherence to

  12. Cell Phone Use by Adults with Intellectual Disabilities

    Science.gov (United States)

    Bryen, Diane Nelson; Carey, Allison; Friedman, Mark

    2007-01-01

    Although cell phone use has grown dramatically, there is a gap in cell phone access between people with disabilities and the general public. The importance of cell phone use among people with intellectual disabilities and studies about use of cell phones by adults with intellectual disabilities was described. Our goal was to determine the extent…

  13. Epilepsy in Children with Intellectual Disability in Bosnia and Herzegovina: Effects of Sex, Level and Etiology of Intellectual Disability

    Science.gov (United States)

    Memisevic, Haris; Sinanovic, Osman

    2009-01-01

    The purpose of this study was to examine the occurrence of epilepsy in children with intellectual disability. An additional goal was to determine if there were statistical differences in the occurrence of epilepsy related to the sex, level and etiology of intellectual disability of children. The sample consisted of 167 children with intellectual…

  14. National Disability Insurance Scheme, health, hospitals and adults with intellectual disability.

    Science.gov (United States)

    Wallace, Robyn A

    2018-03-01

    Preventable poor health outcomes for adults with intellectual disability in health settings have been known about for years. Subsequent analysis and the sorts of reasonable adjustments required in health and disability support settings to address these health gaps are well described, but have not really been embedded in practice in any significant way in either setting. As far as health is concerned, implementation of the National Disability Insurance Scheme (NDIS, the Scheme) affords an opportunity to recognise individual needs of people with intellectual disability to provide reasonable and necessary functional support for access to mainstream health services, to build capacity of mainstream health providers to supply services and to increase individual capacity to access services. Together these strands have potential to transform health outcomes. Success of the Scheme, however, rests on as yet incompletely defined operational interaction between NDIS and mainstream health services and inherently involves the disability sector. This interaction is especially relevant for adults with intellectual disability, known high users of hospitals and for whom hospital outcomes are particularly poor and preventable. Keys to better hospital outcomes are first, the receiving of quality person-centred healthcare from physicians and hospitals taking into account significance of intellectual disability and second, formulation of organised quality functional supports during hospitalisation. Achieving these require sophisticated engagement between consumers, the National Disability Insurance Agency, Commonwealth, State and Territory government leaders, senior hospital and disability administrators, NDIS service providers and clinicians and involves cross fertilisation of values, sharing of operational policies and procedures, determination of boundaries of fiscal responsibility for functional supports in hospital. © 2018 Royal Australasian College of Physicians.

  15. Parent training support for intellectually disabled parents.

    Science.gov (United States)

    Coren, Esther; Hutchfield, Jemeela; Thomae, Manuela; Gustafsson, Carina

    2010-06-16

    Intellectual disability may impact on an individual's capacity to parent a child effectively. Research suggests that the number of intellectually disabled people with children is increasing. Children of parents with intellectual disabilities may be at increased risk of neglectful care which could lead to health, developmental and behavioural problems, or increased risk of intellectual disability.However, there is some indication that some parents with intellectual disabilities are able to provide adequate child care if they are given appropriate training and support to do so. To assess the effectiveness of parent training interventions to support the parenting of parents with intellectual disabilities We searched the following databases: Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library), MEDLINE, EMBASE, CINAHL, PsycINFO, ASSIA, Sociological Abstracts, Dissertation Abstracts International, MetaRegister of Controlled Trials, and ZETOC. Randomised controlled trials comparing parent training interventions for parents with intellectual disabilities with usual care or with a control group. Outcomes of interest were: the attainment of parenting skills specific to the intervention, safe home practices and the understanding of child health. Two review authors independently assessed risk of bias and undertook data extraction. Three trials met the inclusion criteria for this review but no meta-analysis was possible. One study reported improved maternal-child interaction following group parent training compared with the control group. The second study reported some improvements in parents knowledge of life threatening emergencies, ability to recognise dangers and identify precautions and smaller improvements in their ability to implement precautions, use medicines safely and recognise child illness and symptoms. The third study reported improvement in child care and safety skills following the intervention. There is some risk of bias in the

  16. Meeting the support needs of persons with mild intellectual disability or borderline intellectual functioning: still a long way to go.

    Science.gov (United States)

    Nouwens, P J G; Smulders, N B M; Embregts, P J C M; van Nieuwenhuizen, C

    2017-12-01

    Among persons with a mild intellectual disability or borderline intellectual functioning, differences in their characteristics imply that a differentiated approach is required to meet their needs. This retrospective study examined whether the history of support/treatment programs and the type of healthcare providers involved matched the specific support needs of persons with a mild intellectual disability or borderline intellectual functioning. Five (previously identified) profiles of persons with a mild intellectual disability or borderline intellectual functioning were used to investigate to what extent the support needs of this group had been met. For the 250 persons with mild intellectual disability or borderline intellectual functioning who matched these five profiles, data were collected retrospectively from their case files. Persons with mild intellectual disability or borderline intellectual functioning received a very similar amount and type of support/treatment programs. Differences between the profiles were found for non-verbal therapy, residential treatment and contacts with social work. Regarding the type of healthcare providers involved, differences between the profiles emerged for specialised intellectual disability services, youth services and specialised addiction services. The support programs for a heterogeneous population of persons with mild intellectual disability or borderline intellectual functioning seem to be suboptimal, indicating that more differentiation is required in the services offered to these individuals. © 2017 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  17. Psychopathology in Young People With Intellectual Disability

    Science.gov (United States)

    Einfeld, Stewart L.; Piccinin, Andrea M.; Mackinnon, Andrew; Hofer, Scott M.; Taffe, John; Gray, Kylie M.; Bontempo, Daniel E.; Hoffman, Lesa R.; Parmenter, Trevor; Tonge, Bruce J.

    2008-01-01

    Context Comorbid severe mental health problems complicating intellectual disability are a common and costly public health problem. Although these problems are known to begin in early childhood, little is known of how they evolve over time or whether they continue into adulthood. Objective To study the course of psychopathology in a representative population of children and adolescents with intellectual disability. Design, Setting, and Participants The participants of the Australian Child to Adult Development Study, an epidemiological cohort of 578 children and adolescents recruited in 1991 from health, education, and family agencies that provided services to children with intellectual disability aged 5 to 19.5 years in 6 rural and urban census regions in Australia, were followed up for 14 years with 4 time waves of data collection. Data were obtained from 507 participants, with 84% of wave 1 (1991-1992) participants being followed up at wave 4 (2002-2003). Main Outcome Measures The Developmental Behaviour Checklist (DBC), a validated measure of psychopathology in young people with intellectual disability, completed by parents or other caregivers. Changes over time in the Total Behaviour Problem Score and 5 subscale scores of the DBC scores were modeled using growth curve analysis. Results High initial levels of behavioral and emotional disturbance decreased only slowly over time, remaining high into young adulthood, declining by 1.05 per year on the DBC Total Behaviour Problem Score. Overall severity of psychopathology was similar across mild to severe ranges of intellectual disability (with mean Total Behaviour Problem Scores of approximately 44). Psychopathology decreased more in boys than girls over time (boys starting with scores 2.61 points higher at baseline and ending with scores 2.57 points lower at wave 4), and more so in participants with mild intellectual disability compared with those with severe or profound intellectual disability who diverged from

  18. Predictors of Visual-Motor Integration in Children with Intellectual Disability

    Science.gov (United States)

    Memisevic, Haris; Sinanovic, Osman

    2012-01-01

    The aim of this study was to assess the influence of sex, age, level and etiology of intellectual disability on visual-motor integration in children with intellectual disability. The sample consisted of 90 children with intellectual disability between 7 and 15 years of age. Visual-motor integration was measured using the Acadia test of…

  19. Everyday Life of Young Adults with Intellectual Disabilities: Inclusionary and Exclusionary Processes among Young Adults of Parents with Intellectual Disability

    Science.gov (United States)

    Starke, Mikaela

    2013-01-01

    Ten young adults with an intellectual disability whose parents, too, have an intellectual disability were interviewed and completed questionnaires for this exploratory study aimed at charting their experiences of everyday life. Most of the participants reported high life satisfaction, especially with the domains of friends, leisure time, and…

  20. Asthma in intellectual disability: are we managing our patients appropriately?

    Science.gov (United States)

    2016-01-01

    People with intellectual disability are a vulnerable group of people with asthma that has, to date, largely been ignored in the medical literature. Although guidelines for medication management for people with intellectual disability suggest asthma is treated as for other populations, there are special considerations that should be taken into account when managing asthma in this group. Due to their cognitive impairment as well as comorbidities, they are likely to require support with asthma self-management, including inhaler use. Their varying degrees of autonomy mean that there is often a need to provide education and information to both the person and their caregivers. Educational aims To understand general principles of health of people with intellectual disability and how this affects the healthcare professional’s approach to asthma management. To understand how intellectual disability affects cognition, autonomy and communication, and therefore the ability of a person to self-manage asthma. To recognise ways of mitigating respiratory disease risk in people with intellectual disability. To describe ways for healthcare professionals to support people with intellectual disability and their caregivers in asthma management. PMID:28210318

  1. Health promotion and intellectual disability: listening to men.

    Science.gov (United States)

    Bollard, Martin

    2017-01-01

    Taking responsibility for your own health has been a central tenet of public health policy internationally for a number of decades. Governments in the UK and internationally continue to promote a plethora of health promotion strategies, encouraging individuals and communities to adopt healthy lifestyle choices. Although it is widely recognised that men are not as proactive in seeking out medical help or taking on health promotion advice as women, limited gender-sensitive research exists in the field of intellectual disability. Despite many health promotion policy and practice strategies targeted at this population, little research exists exploring whether men with intellectual disability acknowledge health promotion advice. The study aimed to explore how men with mild-to-moderate intellectual disability understood and perceived their health and what health promotion messages they acted upon. The study was based on a participatory approach which enabled 11 men with intellectual disability to contribute as steering group members and as participants through one-to-one interviews. Data were collected between September 2011 and July 2012. Thematic analysis was undertaken. The participants demonstrated a capacity to understand their own health. This was inclusive of a concern about associating being obese with being unhealthy. The participants reported good relationships with their general practitioners (GPs) and felt valued, in particular when the GP was prepared to offer specific intellectual disability and health promotion advice. More gendered research inclusive of the views of this male population is required and the study reiterates the importance of promoting the health of men and women with intellectual disability. © 2015 John Wiley & Sons Ltd.

  2. Ageing in individuals with intellectual disability: issues and concerns in Hong Kong.

    Science.gov (United States)

    Tse, M My; Kwan, R Yc; Lau, J L

    2018-02-01

    The increasing longevity of people with intellectual disability is testimony to the positive developments occurring in medical intervention. Nonetheless, early-onset age-related issues and concerns cause deterioration of their overall wellbeing. This paper aimed to explore the issues and concerns about individuals with intellectual disability as they age. Articles that discussed people older than 30 years with an intellectual disability and those that identified ageing health issues and concerns were included. Only studies reported in English from 1996 to 2016 were included. We searched PubMed, Google Scholar, and Science Direct using the terms 'intellectual disability', 'ageing', 'cognitive impairment', 'health', and 'screening'. Apart from the early onset of age-related health problems, dementia is more likely to develop by the age of 40 years in individuals with intellectual disability. Geriatric services to people with intellectual disability, however, are only available for those aged 60 years and older. Cognitive instruments used for the general population are not suitable for people with intellectual disability because of floor effects. In Hong Kong, the Chinese version of the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities is the only validated instrument for people with intellectual disability. The use of appropriate measurement tools to monitor the progression of age-related conditions in individuals with intellectual disability is of great value. Longitudinal assessment of cognition and function in people with intellectual disability is vital to enable early detection of significant deterioration. This allows for therapeutic intervention before substantial damage to the brain occurs such as dementia that hastens cognitive and functional decline.

  3. Psychodynamic Therapy and Intellectual Disabilities: Dealing with Challenging Behaviour.

    Science.gov (United States)

    Berry, Paul

    2003-01-01

    Four case studies concerning long-term psychodynamic treatment of German individuals with intellectual disabilities are presented: an aggressive young man with a mild intellectual disability; a young man with multiple disabilities with destructive behavior; a withdrawn young woman with self-destructive behavior; and a young man with autism with…

  4. What Is Right? Ethics in Intellectual Disabilities Research

    Science.gov (United States)

    McDonald, Katherine E.; Kidney, Colleen A.

    2012-01-01

    There are important benefits to including adults with intellectual disabilities in research. Calls for their increased participation in research co-occur with notable discussion about how to conduct ethically strong research with adults with intellectual disabilities, a population widely considered vulnerable in the context of research. The…

  5. Fruit flies and intellectual disability.

    Science.gov (United States)

    Bolduc, François V; Tully, Tim

    2009-01-01

    Mental retardation--known more commonly nowadays as intellectual disability--is a severe neurological condition affecting up to 3% of the general population. As a result of the analysis of familial cases and recent advances in clinical genetic testing, great strides have been made in our understanding of the genetic etiologies of mental retardation. Nonetheless, no treatment is currently clinically available to patients suffering from intellectual disability. Several animal models have been used in the study of memory and cognition. Established paradigms in Drosophila have recently captured cognitive defects in fly mutants for orthologs of genes involved in human intellectual disability. We review here three protocols designed to understand the molecular genetic basis of learning and memory in Drosophila and the genes identified so far with relation to mental retardation. In addition, we explore the mental retardation genes for which evidence of neuronal dysfunction other than memory has been established in Drosophila. Finally, we summarize the findings in Drosophila for mental retardation genes for which no neuronal information is yet available. All in all, this review illustrates the impressive overlap between genes identified in human mental retardation and genes involved in physiological learning and memory.

  6. Students' Attitudes towards Individuals with an Intellectual Disability

    Science.gov (United States)

    Patel, Meera; Rose, John

    2014-01-01

    The aim of the study was to investigate attitudes held by a British student population towards individuals with an intellectual disability. Students participated in focus groups addressing their attitudes, behaviours and perceptions of individuals with an intellectual disability. Thematic analysis was the method used to identify emergent themes.…

  7. Intellectual disability and patient activation after release from prison: a prospective cohort study.

    Science.gov (United States)

    Young, J T; Cumming, C; van Dooren, K; Lennox, N G; Alati, R; Spittal, M J; Brophy, L; Preen, D B; Kinner, S A

    2017-10-01

    Intellectual disability and patient activation may be important drivers of inequities in health service access and health outcomes for people with intellectual disability transitioning from prison to the community. We assessed the association between intellectual disability and patient activation after prison release and examined whether this association varied, depending on whether intellectual disability was identified prior to prison release. Overall, 936 prisoners were screened for intellectual disability by using the Hayes Ability Screening Index and completed the Patient Activation Measure (PAM) within 6 weeks of prison release and again at 1, 3 and 6 months post-release. We estimated the association between intellectual disability status and PAM scores by using a multilevel linear model, adjusting for sociodemographic, behavioural, health and criminogenic factors. We used propensity score matching to estimate the impact of being identified with intellectual disability prior to release from prison on the change in mean PAM score after prison release. Compared with those who screened negative for intellectual disability, ex-prisoners who screened positive, both with and without prior identification of intellectual disability, had significantly decreased mean PAM scores [(B = -4.3; 95% CI: -6.3, -2.4) and (B = -4.5; 95% CI: -6.8, -2.3), respectively] over 6 months of follow-up. Among those who reported being identified with intellectual disability prior to release from prison, a significant increase in PAM score at the 6-month follow-up interview (B = 5.89; 95% CI: 2.35, 9.42; P = 0.001) was attributable to being identified with intellectual disability prior to release. Ex-prisoners screening positive for possible intellectual disability have decreased patient activation for at least 6 months after release from prison. However, individuals whose possible intellectual disability is unidentified appear to be particularly vulnerable. Incarceration is a

  8. Health promotion for people with intellectual disabilities - A concept analysis.

    Science.gov (United States)

    Roll, Anne E

    2018-03-01

    Whereas 'health promotion' is a well-known concept for healthcare professionals, the concept of 'health promotion for people with intellectual disabilities' and its unique associated challenges are not well understood. This article provides a systematic analysis of how health promotion is being conceptualised for people with intellectual disabilities and how health promotion can work best in the light of this group's specific needs and limitations. Rodgers' evolutionary concept analysis. MEDLINE, PsycINFO, CINAHL and SocINDEX were searched using the search terms 'health promotion', 'people with intellectual disabilities' and 'developmental disabilities'. This review includes studies published between 1992 and 2014. A total of 52 articles were included. Health promotion for people intellectual disabilities, as discussed in the literature, focuses on four aspects, namely supporting a healthy lifestyle, providing health education, involving supporters and being person-centred. Antecedents of the concept 'health promotion for people with intellectual disabilities' were healthcare access and sensitised healthcare providers. The outcomes were improved health, being empowered, enhanced quality of life and reduced health disparities. This analysis provides a solid foundation for healthcare stakeholders' planning, implementing and evaluating health-promotion activities for people with intellectual disabilities at the policy level and in the community. © 2017 Nordic College of Caring Science.

  9. Identifying the key concerns of Irish persons with intellectual disability.

    Science.gov (United States)

    García Iriarte, Edurne; O'Brien, Patricia; McConkey, Roy; Wolfe, Marie; O'Doherty, Siobhain

    2014-11-01

    Internationally, people with intellectual disability are socially marginalized, and their rights under the United Nations Convention for the Rights of Persons with Disabilities (CRPD) are often ignored. This paper aims to define the key concerns of adults with an intellectual disability in relation to their participation in society using an inclusive research strategy for both data gathering and data analysis. A national study involving 23 focus groups and 168 persons was conducted on the island of Ireland with people with intellectual disability as co-facilitators. A thematic content analysis was undertaken of the verbatim transcripts initially by university co-researchers, and 19 themes were identified. Co-researchers with intellectual disability joined in identifying the eight core themes. These were as follows: living options, employment, relationships, citizenship, leisure time, money management, self-advocacy, and communication. The concerns are discussed within the framework of the CRPD, and implications for transforming service policy are drawn. Why we did the research In many countries, people with intellectual disability have difficulties doing things other people without disabilities do, for example to study, to get a job or to live independently. They also find that their rights are not respected under the Convention on the Rights of Persons with Disabilities (the Convention). We did this study to Learn what are the main issues for adults with intellectual disability in Ireland. Do research with people with intellectual disability. How we did the research People with intellectual disability and their supporters worked with university researchers to plan and do the research. We met with people in groups and 168 people told us about things important to them. What we found out We found that there were very important things that people talked about in the groups. We chose the most important: living options, employment, relationships, rights, leisure, money

  10. Is Celiac Disease an Etiological Factor in Children with Nonsyndromic Intellectual Disability?

    Science.gov (United States)

    Sezer, Taner; Balcı, Oya; Özçay, Figen; Bayraktar, Nilufer; Alehan, Füsun

    2016-03-01

    To determine the prevalence of celiac disease in children and adolescents with nonsyndromic intellectual disability, we investigated serum levels of tissue transglutaminase antibody and total IgA from 232 children with nonsyndromic intellectual disability and in a healthy control group of 239 children. Study participants who were positive for tissue transglutaminase antibody underwent a duodenal biopsy. A total of 3 patients in the nonsyndromic intellectual disability group (5.45%) and 1 in the control group (0.41%) had positive serum tissue transglutaminase antibody (P > .05). Duodenal biopsy confirmed celiac disease in only 1 patient who had nonsyndromic intellectual disability. In this present study, children with nonsyndromic intellectual disability did not exhibit a higher celiac disease prevalence rate compared with healthy controls. Therefore, we suggest that screening test for celiac disease should not be necessary as a part of the management of mild and moderate nonsyndromic intellectual disability. However, cases of severe nonsyndromic intellectual disability could be examined for celiac disease. © The Author(s) 2015.

  11. Intellectual Disability and Space: Critical Narratives of Exclusion

    Science.gov (United States)

    Gabel, Susan L.; Cohen, Carie J.; Kotel, Kathleen; Pearson, Holly

    2013-01-01

    The language of intellectual disability is rife with spatial terms. Students labeled with intellectual disability are "placed in" special education where they may be "self-contained," "segregated," "excluded," or "included." Conversations ensue about where to seat them, "next" to whom, and at what distance "from" the teacher and other students. In…

  12. Teaching Students with Intellectual Disabilities: Constructivism or Behaviorism?

    Science.gov (United States)

    Algahtani, Faris

    2017-01-01

    Many teaching strategies have been postulated over the past years by various scholars in an effort to enhance the education system among students with intellectual disabilities. There is much debate on the application of constructivist and behaviorist perspectives for teaching students with intellectual disabilities as addressed in this paper.…

  13. Genetics Home Reference: PPP2R5D-related intellectual disability

    Science.gov (United States)

    ... Health Conditions PPP2R5D-related intellectual disability PPP2R5D-related intellectual disability Printable PDF Open All Close All Enable Javascript ... view the expand/collapse boxes. Description PPP2R5D -related intellectual disability is a neurological disorder characterized by moderate to ...

  14. Self-Esteem of Greek Mothers of Children with Intellectual Disabilities.

    Science.gov (United States)

    Argyrakouli, Effi; Zafiropoulou, Maria

    2003-01-01

    This study examined the self-esteem of 50 mothers of children with intellectual disabilities living in central Greece and 50 similar mothers of non-disabled children. Results indicated significantly lower self-esteem for mothers of children with intellectual disabilities. The best predictor of positive maternal self-esteem in the disabled group…

  15. KEMANDIRIAN ANAK INTELLECTUAL DISABILITY TERKAIT DENGAN TINGKAT KEMATANGAN SOSIAL

    OpenAIRE

    Muh Khoironi Fadli; Dewi Retno Pamungkas; Retno Sumiyarini

    2014-01-01

    Background:Intellectual disability is disorder of intellectual function that is significantly below averagewith various deficits in adaptive function, such as taking care of oneself or occupational activities thatemerge before the age of 18 years old. One characteristic of intellectuallydisabled children in adaptivefunction is social maturity disorder. Children with intellectual disability haveproblem in social maturityandlimitation in fulfilling needs in daily activities.Objective:To identif...

  16. BEHAVIORAL PROBLEMS IN CHILDREN WITH MILD AND MODERATE INTELLECTUAL DISABILITY

    Directory of Open Access Journals (Sweden)

    Vesna KOSTIKJ-IVANOVIKJ

    2009-06-01

    Full Text Available Large number of children with intellectual disabilities encounters behavioral problems or show disharmonic behavior within the family, at school and in the community. Researches show that 30-50% of persons with intellectual disabilities have some behavioral problems. The behavior of children with intellectual disabilities depends on many factors: age of the child, level of intellectual disability, cognitive potentials, level of psycho-physical development, differentiation of emotions, communicative skills, social status and conditions of the environment (in the family and the wider community where the child lives. The influence of some of these factors has been analyzed by this research. There are many ins truments (questionnaires, scales that evaluate behavior of persons with intellectual disabilities, and reveal problems that these persons have in their psychosocial development and social life. This research used the AAMD Adaptive behavior Scale (part II and Scale for evaluating behavior of the child in school by authors Bojanin, Savanovikj.

  17. Children With Intellectual Disability and Hospice Utilization: The Moderating Effect of Residential Care.

    Science.gov (United States)

    Lindley, Lisa C

    2017-01-01

    Children with intellectual disability commonly lack access to pediatric hospice care services. Residential care may be a critical component in providing access to hospice care for children with intellectual disability. This research tested whether residential care intensifies the relationship between intellectual disability and hospice utilization (ie, hospice enrollment, hospice length of stay), while controlling for demographic characteristics. Multivariate regression analyses were conducted using 2008 to 2010 California Medicaid claims data. The odds of children with intellectual disability in residential care enrolling in hospice care were 3 times higher than their counterparts in their last year of life, when controlling for demographics. Residential care promoted hospice enrollment among children with intellectual disability. The interaction between intellectual disability and residential care was not related to hospice length of stay. Residential care did not attenuate or intensify the relationship between intellectual disability and hospice length of stay. The findings highlight the important role of residential care in facilitating hospice enrollment for children with intellectual disability. More research is needed to understand the capability of residential care staff to identify children with intellectual disability earlier in their end-of-life trajectory and initiate longer hospice length of stays.

  18. Non-verbal communication between Registered Nurses Intellectual Disability and people with an intellectual disability: an exploratory study of the nurse's experiences. Part 1.

    Science.gov (United States)

    Martin, Anne-Marie; Connor-Fenelon, Maureen O'; Lyons, Rosemary

    2012-03-01

    This is the first of two articles presenting the findings of a qualitative study which explored the experiences of Registered Nurses Intellectual Disability (RNIDs) of communicating with people with an intellectual disability who communicate non-verbally. The article reports and critically discusses the findings in the context of the policy and service delivery discourses of person-centredness, inclusion, choice and independence. Arguably, RNIDs are the profession who most frequently encounter people with an intellectual disability and communication impairment. The results suggest that the communication studied is both complicated and multifaceted. An overarching category of 'familiarity/knowing the person' encompasses discrete but related themes and subthemes that explain the process: the RNID knowing the service-user; the RNID/service-user relationship; and the value of experience. People with an intellectual disability, their families and disability services are facing a time of great change, and RNIDs will have a crucial role in supporting this transition.

  19. Intellectual Disability in Children; a Systematic Review

    Directory of Open Access Journals (Sweden)

    Dasteh Goli N.*BSc

    2016-03-01

    Full Text Available Abstract Aims: Intellectual disability is a condition characterised by the inability of a person to undertake normal psychological activities. The purpose of this study was to systematically review the intellectual disability in children and discuss the implications of different environmental and genetic factors, which describe particular categories of intellectual disable cases. Information & Methods: This systematic review was performed in 2014 by searching the existing literature in PubMed database in the scope of “intellectual disability in children”. 38 articles written from 1987 to 2014 were selected and surveyed for review. Findings: The prevalence of ID in the general population is estimated to be approximately 1%. ID disorder is multi-causal, encompassing all factors that interfere with brain development and functioning. Causes usually are classified according to the time of the insult, as prenatal, perinatal, and postnatal or acquired. Some causes, such as environmental toxins or endocrine disorders, may act at multiple times. Others, such as genetic disorders, have different manifestations during postnatal development. The outcome for ID is variable and depends upon the aetiology, associated conditions, and environmental and social factors. The goals of management of ID are to strengthen areas of reduced function, minimize extensive deterioration in mental cognitive and adaptability, and lastly, to promote optimum or normal functioning of the individuals in their community. Conclusion: Prominent features of ID include significant failures in both intellectual functioning and adaptive behaviour, which comprises daily social and practical life skills, commencing earlier in life.

  20. Reported Wandering Behavior among Children with Autism Spectrum Disorder and/or Intellectual Disability

    Science.gov (United States)

    Rice, Catherine E.; Zablotsky, Benjamin; Avila, Rosa M.; Colpe, Lisa J.; Schieve, Laura A.; Pringle, Beverly; Blumberg, Stephen J.

    2016-01-01

    Objective To characterize wandering, or elopement, among children with autism spectrum disorder (ASD) and intellectual disability. Study design Questions on wandering in the previous year were asked of parents of children with ASD with and without intellectual disability and children with intellectual disability without ASD as part of the 2011 Survey of Pathways to Diagnosis and Services. The Pathways study sample was drawn from the much larger National Survey of Children with Special Health Care Needs conducted in 2009-2010. Results For children with special healthcare needs diagnosed with either ASD, intellectual disability, or both, wandering or becoming lost during the previous year was reported for more than 1 in 4 children. Wandering was highest among children with ASD with intellectual disability (37.7%) followed by children with ASD without intellectual disability (32.7%), and then children with intellectual disability without ASD (23.7%), though the differences between these groups were not statistically significant. Conclusions This study affirms that wandering among children with ASD, regardless of intellectual disability status, is relatively common. However, wandering or becoming lost in the past year was also reported for many children with intellectual disability, indicating the need to broaden our understanding of this safety issue to other developmental disabilities. PMID:27157446

  1. Measurement of Mood in Adolescents with Intellectual Disability

    Science.gov (United States)

    Argus, Geoffrey R.; Terry, Peter C.; Bramston, Paul; Dinsdale, Sarah L.

    2004-01-01

    To date, there has been limited research into mood responses among adolescents with intellectual disability. One reason for this is the absence of a reliable and valid measure for the assessment of mood among this population. The present study evaluated such a measure among a sample of 135 adolescents with mild intellectual disability. Results…

  2. In-school service predictors of employment for individuals with intellectual disability.

    Science.gov (United States)

    Park, Jiyoon; Bouck, Emily

    2018-04-17

    Although there are many secondary data analyses of the National Longitudinal Transition Study-2 (NLTS-2) to investigate post-school outcome for students with disabilities, there has been a lack of research with in-school service predictors and post-school outcome for students with specific disability categories. This study was a secondary data analysis of NLTS-2 to investigate the relationship between current employment status and in-school services for individuals with intellectual disability. Statistical methods such as descriptive statistics and logistic regression were used to analyze NLTS-2 data set. The main findings included that in-school services were correlated with current employment status, and that primary disability (i.e., mild intellectual disability and moderate/severe intellectual disability) was associated with current employment status. In-school services are critical in predicting current employment for individuals with intellectual disability. Also, data suggest additional research is needed to investigate various in-school services and variables that could predict employment differences between individuals with mild and moderate/severe intellectual disability. Copyright © 2018 Elsevier Ltd. All rights reserved.

  3. The effects of rehabilitation on intellectually-disabled people – a systematic review

    Directory of Open Access Journals (Sweden)

    Ernest J. Sechoaro

    2014-08-01

    Objective: To synthesise critically and summarise the best available evidence of the effects of rehabilitation on intellectually-disabled people. Method: Literature searches of different electronic databases and manual searches were conducted using selected keywords. Studies on the effects of rehabilitation on intellectually-disabled people were selected systematically, appraised critically for methodological quality and summarised. Results: Rehabilitation interventions indicated good outcomes with regard to intellectually-disabled people. Findings showed that people with mild to moderate intellectual disabilities improved in terms of activities of daily living (ADL after rehabilitation. Improvement was noted in ADL, self-care skills, communication skills and cognitive achievements. Conclusion: Findings demonstrated positive rehabilitation effects on intellectually-disabled people. This study contributes to the comprehensive nursing care of intellectually-disabled people by endorsement of the effectiveness of rehabilitation in terms of ADL, self-care skills, communication skills and cognitive achievements. The collected evidence of this study may contribute to the education of more effective nurse practitioners involved in the daily care and rehabilitation of intellectually-disabled people.

  4. Sexuality and Intellectual Disability

    Science.gov (United States)

    ... for loving and fulfilling relationships with others. Individual rights to sexuality, which is essential to human health and well-being, have been denied. This loss has negatively affected people with intellectual disabilities in gender identity, friendships, self-esteem, body image ...

  5. Healthy living: A health promotion program for adults with intellectual disability.

    Science.gov (United States)

    An, Andrea; McPherson, Lyn; Urbanowicz, Anna

    2018-04-04

    Adults with intellectual disability are more likely to experience a range of physical and mental health problems in comparison to the general population. However with access to appropriate health care and promotion, many of these health problems can be prevented. To explore the perspectives of stakeholders of a health promotion program established for adults with intellectual disability. Semi-structured interviews were conducted with 12 stakeholders of a health promotion program. Stakeholders included adults with intellectual disability (n = 6), their support persons (n = 4) and program presenters (n = 2). Adults with intellectual disability included three males and three females with a mean age of 45.5 years (range 37-51 years). Interviews were digitally recorded and transcribed verbatim. Transcripts were analysed using thematic analysis. Four main themes emerged from the data. The first theme highlights the positive feedback all stakeholders, especially adults with intellectual disability, had for the program and the second focuses on suggestions for changes to improve it. The third and final themes explore how having input from adults with intellectual disability and their support persons, who have a unique understanding of their needs, could be better incorporated into the development of the program. This health promotion program has been well received by people with intellectual disability when incorporated into their weekly social club meetings With encouragement and training, people with intellectual disability and their support workers could be more involved in the development of the program to ensure it is relevant to their needs. Copyright © 2018 Elsevier Inc. All rights reserved.

  6. Gender Differences in Psychiatric Diagnoses among Inpatients with and without Intellectual Disabilities

    Science.gov (United States)

    Lunsky, Yona; Bradley, Elspeth A.; Gracey, Carolyn D.; Durbin, Janet; Koegl, Chris

    2009-01-01

    There are few published studies on the relationship between gender and psychiatric disorders in individuals with intellectual disabilities. Adults (N = 1,971) with and without intellectual disabilities who received inpatient services for psychiatric diagnosis and clinical issues were examined. Among individuals with intellectual disabilities,…

  7. Physical Fitness and Fatness in Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Salaun, Laureline; Berthouze-Aranda, Sophie E.

    2012-01-01

    Background: This study investigated health-related fitness in adolescents with intellectual disabilities and analysed the various performances in physical fitness tests according to degrees of obesity. Materials and Methods: Eighty-seven French intellectual disabilities adolescents (14.24 [plus or minus] 1.48 years) performed the EUROFIT physical…

  8. Is It Worth It? Benefits in Research with Adults with Intellectual Disability

    Science.gov (United States)

    McDonald, Katherine E.; Conroy, Nicole E.; Olick, Robert S.

    2016-01-01

    Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family…

  9. "I Never Thought about It": Teaching People with Intellectual Disability to Vote

    Science.gov (United States)

    Agran, Martin; MacLean, William; Andren, Katherine Anne Kitchen

    2015-01-01

    Despite an increasing commitment in promoting the full inclusion of people with intellectual disability in their communities, it appears that few adults with intellectual disability participate in elections as registered voters. We surveyed a variety of stakeholders about voting by people with intellectual disability using quantitative and…

  10. Indigenous Australians, Intellectual Disability and Incarceration: A Confluence of Rights Violations

    Directory of Open Access Journals (Sweden)

    Claire E. Brolan

    2018-02-01

    Full Text Available Abstract: This article reviews the health and wellbeing of Aboriginal and Torres Strait Islander Australians with intellectual disability in the Australian prison system through a human rights lens. There is an information gap on this group of Australian prisoners in the health and disability literature and the multi-disciplinary criminal law and human rights law literature. This article will consider the context of Indigenous imprisonment in Australia and examine the status of prisoner health in that country, as well as the status of the health and wellbeing of prisoners with intellectual disability. It will then specifically explore the health, wellbeing and impact of imprisonment on Indigenous Australians with intellectual disability, and highlight how intersectional rights deficits (including health and human rights deficits causally impact the ability of Indigenous Australians with intellectual disability to access due process, equal recognition and justice in the criminal justice and prison system. A central barrier to improving intersectional and discriminatory landscapes relating to health, human rights and justice for Indigenous Australian inmates with intellectual disability, and prisoners with intellectual disability more broadly in the Australian context, is the lack of sufficient governance and accountability mechanisms (including Indigenous-led mechanisms to enforce the operationalisation of consistent, transparent, culturally responsive, rights-based remedies.

  11. Working memory functions in children with different degrees of intellectual disability.

    Science.gov (United States)

    Schuchardt, K; Gebhardt, M; Mäehler, C

    2010-04-01

    In recent years, there has been increased research interest in the functioning of working memory in people with intellectual disabilities. Although studies have repeatedly found these individuals to have weak working memory skills, few investigations have distinguished between different degrees of intellectual disability. This study aims to help close this research gap and, in so doing, to examine whether the deficits observed reflect a developmental lag or a qualitative deviation from normal development. In a 5-group design, the working memory performance of a group of 15-year-olds with mild intellectual disability (IQ 50-69) was compared with that of two groups of children (aged 10 and 15 years) with borderline intellectual disability (IQ 70-84) and with that of two groups of children with average intellectual abilities (IQ 90-115) matched for mental and chronological age (aged 7 and 15 years). All children were administered a comprehensive battery of tests assessing the central executive, the visual-spatial sketchpad, and the phonological loop. The results showed deficits in all three components of working memory, and revealed that these deficits increased with the degree of intellectual disability. The findings indicate that, relative to their mental age peers, children with learning difficulties show structural abnormalities in the phonological store of the phonological loop, but developmental lags in the other two subsystems. Similar patterns of results emerged for both subgroups of children with intellectual disability, indicating that problems with phonological information processing seem to be one of the causes of cognitive impairment in individuals with intellectual disability.

  12. Feasibility of Eight Physical Fitness Tests in 1,050 Older Adults with Intellectual Disability : Results of the Healthy Ageing with Intellectual Disabilities Study

    NARCIS (Netherlands)

    Hilgenkamp, Thessa I. M.; van Wijck, Ruud; Evenhuis, Heleen M.

    Although physical fitness is relevant for well-being and health, knowledge on the feasibility of instruments to measure physical fitness in older adults with intellectual disability (ID) is lacking. As part of the study Healthy Ageing with Intellectual Disabilities with 1,050 older clients with ID

  13. De novo duplication of 17p13.1-p13.2 in a patient with intellectual disability and obesity.

    Science.gov (United States)

    Kuroda, Yukiko; Ohashi, Ikuko; Tominaga, Makiko; Saito, Toshiyuki; Nagai, Jun-Ichi; Ida, Kazumi; Naruto, Takuya; Masuno, Mitsuo; Kurosawa, Kenji

    2014-06-01

    17p13.1 Deletion encompassing TP53 has been described as a syndrome characterized by intellectual disability and dysmorphic features. Only one case with a 17p13.1 duplication encompassing TP53 has been reported in a patient with intellectual disability, seizures, obesity, and diabetes mellitus. Here, we present a patient with a 17p13.1 duplication who exhibited obesity and intellectual disability, similar to the previous report. The 9-year-old proposita was referred for the evaluation of intellectual disability and obesity. She also exhibited insulin resistance and liver dysfunction. She had wide palpebral fissures, upturned nostrils, a long mandible, short and slender fingers, and skin hyperpigmentation. Array comparative genomic hybridization (array CGH) detected a 3.2 Mb duplication of 17p13.1-p13.2 encompassing TP53, FXR2, NLGN2, and SLC2A4, which encodes the insulin-responsive glucose transporter 4 (GLUT4) associated with insulin-stimulated glucose uptake in adipocytes and muscle. We suggest that 17p13.1 duplication may represent a clinically recognizable condition characterized partially by a characteristic facial phenotype, developmental delay, and obesity. © 2014 Wiley Periodicals, Inc.

  14. Motor performance of children with mild intellectual disability and borderline intellectual functioning

    NARCIS (Netherlands)

    Vuijk, P. J.; Hartman, E.; Scherder, E.; Visscher, C.

    2010-01-01

    Background There is a relatively small body of research on the motor performance of children with mild intellectual disabilities (MID) and borderline intellectual functioning (BIF). Adequate levels of motor skills may contribute to lifelong enjoyment of physical activity, participation in sports and

  15. Qualitative Study of Malnutrition in People with Intellectual Disabilities

    Science.gov (United States)

    Franssen, Janine J. L.; Maaskant, Marian A.; van Schrojenstein Lantman-de Valk, Henny M. J.

    2011-01-01

    The prevalence of underweight status is relatively high in persons with intellectual disabilities. However, it is not clear whether this is due to malnourishment. The authors sought to examine the awareness and knowledge of physicians, dieticians, and direct care staff regarding malnutrition in people with intellectual disabilities. They also…

  16. Non-suicidal self-injury among children with hearing loss and intellectual disability.

    Science.gov (United States)

    Akram, Bushra; Tariq, Amina; Rafi, Zeeshan

    2017-10-01

    To find the prevalence and to identify the predictors of non-suicidal self-injury among school-going children.. This cross-sectional study was conducted at the University of Gujrat, Gujrat Pakistan, from September 2015 to October 2016, and comprised children with intellectual disability and hearing loss. Participants were recruited from schools for special children located in Gujranwala, Jhelum and Gujrat. Multistage stratified sampling technique was used. Of the 325 children, 178(50.4%) had intellectual disability and 175(49.6%) had hearing loss. Findings indicated that the prevalence of self-injurious behaviour was higher in children with intellectual disability 48(27%) compared to their counterparts with hearing loss 3(2%). Neural network, when administered on whole data set, indicated type of disability 0.474(100%), education/training 0.99(20.9%) and access of counselling 0.114(24%) as important predictors of non-suicidal self-injury in both groups. On the other hand, the degree of disability (hearing loss 0.42[100%]; intellectual disability 0.32[100%]), education/ training (hearing loss 0.18[43%]; intellectual disability 0.27[84.5%]) and access of counselling (hearing loss 0.175[41.8%]; intellectual disability 0.256[78.7%]) were important predictors of non-suicidal self-injury among the participants, when neural network was run on the split files on the basis of disability. The prevalence of non-suicidal self-injury among children with intellectual disability was higher as compared to those with hearing loss.

  17. KEMANDIRIAN ANAK INTELLECTUAL DISABILITY TERKAIT DENGAN TINGKAT KEMATANGAN SOSIAL

    Directory of Open Access Journals (Sweden)

    Muh Khoironi Fadli

    2014-04-01

    Full Text Available Background:Intellectual disability is disorder of intellectual function that is significantly below averagewith various deficits in adaptive function, such as taking care of oneself or occupational activities thatemerge before the age of 18 years old. One characteristic of intellectuallydisabled children in adaptivefunction is social maturity disorder. Children with intellectual disability haveproblem in social maturityandlimitation in fulfilling needs in daily activities.Objective:To identify correlation between social maturity and self-reliance of children with intellectualdisability.Methods:The study was non experimental. It used cross sectional design and quantitative approach.Samples were taken throughproportionate stratified random samplingtechnique. Research instrumentused to assess social maturity was Vineland Social Maturity Scale (VSMS and self-reliance wasFunctional Independence Measure for Children (WeeFIM. Subject of the study were children withintellectual disability in SLB Bakti Siwithat met inclusion and exclusion criteria as many as 61children.The study usednon parametricSpearman’s Rank Correlationtestat significancep<0.05.Result:Social maturity was high in 9 children (14.8%, medium in 23 children (37.7%, and low in 29children (47.9%. Self-reliance of children with intellectual disability showed average score (mean105.36with deviation standard15.43and range56-126.Score of correlation between social maturity andself-reliance of children with intellectual disability inSLB Bakti Siwishowedpvalue 0.000 (p<0.05.Conclusion: There was significant correlation between social maturity and sel-reliance of children withintellectual disability in SLB Bakti Siwi with score of correlation in strong category.

  18. Behaviour Problems in Children with Intellectual Disabilities in a Resource-Poor Setting in India--Part 1: Association with Age, Sex, Severity of Intellectual Disabilities and IQ

    Science.gov (United States)

    Lakhan, Ram; Kishore, M. Thomas

    2018-01-01

    Background: Behaviour problems are most common in people with intellectual disabilities. Nature of behaviour problems can vary depending upon the age, sex and intellectual level (IQ). Objectives: This study examined the distribution of behaviour problems across intellectual disability categories and their association with IQ age and sex in…

  19. Fruit flies and intellectual disability

    OpenAIRE

    Bolduc, François V.; Tully, Tim

    2009-01-01

    Mental retardation—known more commonly nowadays as intellectual disability—is a severe neurological condition affecting up to 3% of the general population. As a result of the analysis of familial cases and recent advances in clinical genetic testing, great strides have been made in our understanding of the genetic etiologies of mental retardation. Nonetheless, no treatment is currently clinically available to patients suffering from intellectual disability. Several animal models have been use...

  20. An Initial Evaluation of the Comprehensive Quality of Life Scale--Intellectual Disability.

    Science.gov (United States)

    Cummins, Robert A.; And Others

    1997-01-01

    A study of 59 Australian people with an intellectual disability and 69 university students evaluated a new scale to measure the life quality of people with an intellectual disability. The Comprehensive Quality of Life Scale--Intellectual Disability was found to be a useful instrument to measure comparative life quality. (Author/CR)

  1. Do individuals with intellectual disability have a lower peak heart rate and maximal oxygen uptake?

    Science.gov (United States)

    Hilgenkamp, Thessa Irena Maria; Baynard, Tracy

    2017-12-12

    Individuals with intellectual disability (ID) have very low physical activity and low peak oxygen uptake (VO 2peak ), potentially explained by physiologically lower peak heart rates (HR peak ). The present authors performed a retrospective analysis of a large data set of individuals with intellectual disability (n = 100), with Down syndrome (DS) (n = 48) and without intellectual disability (n = 224) using multiple linear regression analyses, to determine if individuals with intellectual disability exhibit lower HR peak and VO 2peak than individuals without intellectual disability, controlling for age, sex and body mass index (BMI). Individuals with intellectual disability on average have significantly lower HR peak and VO 2peak than individuals without intellectual disability, even when controlling VO 2peak for the lower HR peak . This study suggests potential physiological differences in individuals with intellectual disability and warrants further investigation to determine their relevance to physical activity promotion and exercise testing in individuals with intellectual disability. © 2017 John Wiley & Sons Ltd.

  2. The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals: evidence from a mixed-methods study.

    Science.gov (United States)

    Tuffrey-Wijne, Irene; Goulding, Lucy; Gordon, Vanessa; Abraham, Elisabeth; Giatras, Nikoletta; Edwards, Christine; Gillard, Steve; Hollins, Sheila

    2014-09-24

    There has been evidence in recent years that people with intellectual disabilities in acute hospitals are at risk of preventable deterioration due to failures of the healthcare services to implement the reasonable adjustments they need. The aim of this paper is to explore the challenges in monitoring and preventing patient safety incidents involving people with intellectual disabilities, to describe patient safety issues faced by patients with intellectual disabilities in NHS acute hospitals, and investigate underlying contributory factors. This was a 21-month mixed-method study involving interviews, questionnaires, observation and monitoring of incident reports to assess the implementation of recommendations designed to improve care provided for patients with intellectual disabilities and explore the factors that compromise or promote patient safety. Six acute NHS Trusts in England took part. Data collection included: questionnaires to clinical hospital staff (n = 990); questionnaires to carers (n = 88); interviews with: hospital staff including senior managers, nurses and doctors (n = 68) and carers (n = 37); observation of in-patients with intellectual disabilities (n = 8); monitoring of incident reports (n = 272) and complaints involving people with intellectual disabilities. Staff did not always readily identify patient safety issues or report them. Incident reports focused mostly around events causing immediate or potential physical harm, such as falls. Hospitals lacked effective systems for identifying patients with intellectual disabilities within their service, making monitoring safety incidents for this group difficult.The safety issues described by the participants were mostly related to delays and omissions of care, in particular: inadequate provision of basic nursing care, misdiagnosis, delayed investigations and treatment, and non-treatment decisions and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders. The events leading to avoidable harm

  3. Effectiveness of Speech Therapy in Adults with Intellectual Disabilities

    Science.gov (United States)

    Terband, Hayo; Coppens-Hofman, Marjolein C.; Reffeltrath, Maaike; Maassen, Ben A. M.

    2018-01-01

    Background: This study investigated the effect of speech therapy in a heterogeneous group of adults with intellectual disability. Method: Thirty-six adults with mild and moderate intellectual disabilities (IQs 40-70; age 18-40 years) with reported poor speech intelligibility received tailored training in articulation and listening skills delivered…

  4. Genetic testing of aetiology of intellectual disability in a dedicated physical healthcare outpatient clinic for adults with intellectual disability.

    Science.gov (United States)

    Wallace, R A

    2016-02-01

    No guidelines exist for assessment of aetiology of intellectual disability in adults with intellectual disability by adult physicians, although robust guidelines exist for paediatric populations. It was speculated that the paediatric guidelines would also be suitable for adults. In rural/regional setting with limited clinical genetics, to perform a quality assurance evaluation on genetics assessment of aetiology of developmental disability in adults attending a dedicated healthcare clinic for adults with intellectual disability, compared results with paediatric standards, speculates if these seem appropriate for adults and speculates on a role for clinical genetics services. Retrospective chart audit of eligible patients looking at genetic clinical assessment, tests selected (molecular karyotype, G banding, metabolics), and yields of positive results. The results were compared with the recommended paediatric guidelines. Of 117 eligible adult patients, ideal genetic history was incomplete for 40% of patients without Down syndrome because of physician cause and lack of information. The number of abnormal genetic results increased from 46% to 66%, mainly from the molecular karyotype, though not all may have been clinically relevant. The improved yield from this test was similar to that in paediatric studies. Use of G banding and metabolic testing could be refined. Improvement can be made in clinical genetic assessment, but results generally support use of molecular karyotyping as first tier testing of cause of unknown intellectual disability in adults, as in the case for paediatric populations. The study highlights a necessary complementary role for clinical geneticists to interpret abnormal results. © 2016 Royal Australasian College of Physicians.

  5. The Association between Education and Mortality for Adults with Intellectual Disability.

    Science.gov (United States)

    Landes, Scott D

    2017-03-01

    Although the relationship between education and mortality is well documented in the general population, it has not been examined for adults with intellectual disability. Informed by fundamental cause theory, I explore the association between education and mortality in a sample of 4,241 adults with intellectual disability from the 1986-2009 National Health Interview Survey with Linked Mortality Files through 2011. Cox regression models were utilized to analyze the predictive effect of education on mortality risk while taking into account birth cohort differences. Increased education was associated with lower mortality risk for adults with intellectual disability, and this relationship strengthened in later birth cohorts who had greater access to the public education system. Comparison with a sample of 21,205 adults without intellectual disability demonstrates that the association between education and mortality risk was not as robust for adults with intellectual disability and highlights the ongoing socioeconomic challenges faced by this population.

  6. Sibling relationships in adults who have siblings with or without intellectual disabilities.

    Science.gov (United States)

    Doody, Mairéad A; Hastings, Richard P; O'Neill, Sarah; Grey, Ian M

    2010-01-01

    There is relatively little research on the relationships between adults with intellectual disability and their siblings, despite the potential importance of these relationships for either individual's psychological well-being and future care roles that might be adopted by adult siblings. In the present study, sibling relationships of adults with adult siblings with (N=63) and without (N=123) intellectual disability were explored. Contact, warmth, conflict, and rivalry were measured using questionnaires available as an on-line survey. Expressed emotion was measured using the Five Minute Speech Sample over the telephone to establish an independently coded measure of criticism from the participant towards their sibling. Overall, there were few group differences in contact and sibling relationship. There was less telephone contact in the intellectual disability group, and less reported warmth in the relationship with siblings with intellectual disability although this was mainly associated with severe/profound intellectual disability. Exploratory analyses were conducted of the correlates of sibling relationships in both the intellectual disability and control groups. These analyses revealed a small number of different associations especially for conflict, which was lower when either the participant or sibling was younger in the control group but associated with relative age in the intellectual disability group.

  7. Special education for intellectual disability: current trends and perspectives.

    Science.gov (United States)

    Kauffman, James M; Hung, Li-Yu

    2009-09-01

    To inform readers of current issues in special education for individuals with intellectual disabilities and summarize recent research and opinion. Two issues dominate special education for students with intellectual disabilities in the early 21st century. First, what should be taught to such students and who should teach them? Second, where should such students be taught - in 'inclusive' settings alongside normal peers or in special settings dedicated to their special needs? Research on teaching reading, arithmetic, and functional daily living skills to students with disabilities suggests the superiority of direct, systematic instruction. Universal design is often seen as supportive of inclusion. Inclusion has been seen as the central issue in special education but is gradually giving way to concern for what students learn. Direct, systematic instruction in reading, arithmetic, and daily living skills is the most effective approach to teaching students with intellectual disabilities. Basic concepts and logic suggest that special and general education cannot be equivalent. We conclude that what students are taught should be put ahead of where they are taught. Our fundamental concern is that students with intellectual disabilities be respected and be taught all they can learn.

  8. Postoperative adverse outcomes in intellectually disabled surgical patients: a nationwide population-based study.

    Directory of Open Access Journals (Sweden)

    Jui-An Lin

    Full Text Available BACKGROUND: Intellectually disabled patients have various comorbidities, but their risks of adverse surgical outcomes have not been examined. This study assesses pre-existing comorbidities, adjusted risks of postoperative major morbidities and mortality in intellectually disabled surgical patients. METHODS: A nationwide population-based study was conducted in patients who underwent inpatient major surgery in Taiwan between 2004 and 2007. Four controls for each patient were randomly selected from the National Health Insurance Research Database. Preoperative major comorbidities, postoperative major complications and 30-day in-hospital mortality were compared between patients with and without intellectual disability. Use of medical services also was analyzed. Adjusted odds ratios using multivariate logistic regression analyses with 95% confidence intervals were applied to verify intellectual disability's impact. RESULTS: Controls were compared with 3983 surgical patients with intellectual disability. Risks for postoperative major complications were increased in patients with intellectual disability, including acute renal failure (odds ratio 3.81, 95% confidence interval 2.28 to 6.37, pneumonia (odds ratio 2.01, 1.61 to 2.49, postoperative bleeding (odds ratio 1.35, 1.09 to 1.68 and septicemia (odds ratio 2.43, 1.85 to 3.21 without significant differences in overall mortality. Disability severity was positively correlated with postoperative septicemia risk. Medical service use was also significantly higher in surgical patients with intellectual disability. CONCLUSION: Intellectual disability significantly increases the risk of overall major complications after major surgery. Our findings show a need for integrated and revised protocols for postoperative management to improve care for intellectually disabled surgical patients.

  9. Intellectually disabled students’ conceptions concerning the earth and heavenly bodies

    Directory of Open Access Journals (Sweden)

    Engin Baysen

    2014-08-01

    Full Text Available Learning scientific concepts are crucial for both normally achieving and intellectually disabled students attending inclusion classes. This research study aimed to reveal intellectually disabled students’ conceptions and thinkings utilizing data of interviews and drawings concerning the earth and heavenly bodies and comparing them with the findings belonging to those showing normal mental achievement. Thirty intellectually disabled students (19 boys and 11 girls participated to this research. They were questioned individually using clinical interview technique. Intellectually disabled students have main similarities to those of normally achieving concerning the phenomenon. All the students participating in the present research study do have misconceptions concerning the phenomenon. Their thinking approaches (tendencies and the way they are affected by certain context while constructing their conceptions is similar to those of normally achieving. They used their concepts consistently and showed theory-like mental constructions.

  10. An Audit of the Irish National Intellectual Disability Database

    Science.gov (United States)

    Dodd, Philip; Craig, Sarah; Kelly, Fionnola; Guerin, Suzanne

    2010-01-01

    This study describes a national data audit of the National Intellectual Disability Database (NIDD). The NIDD is a national information system for intellectual disability (ID) for Ireland. The purpose of this audit was to assess the overall accuracy of information contained on the NIDD, as well as collecting qualitative information to support the…

  11. Overweight and Obesity in Older People with Intellectual Disability

    Science.gov (United States)

    de Winter, C. F.; Bastiaanse, L. P.; Hilgenkamp, T. I. M.; Evenhuis, H. M.; Echteld, M. A.

    2012-01-01

    Overweight and obesity are major health problems associated with increased cardiovascular disease risk, which is not sufficiently studied in people with intellectual disability yet. The present study was part of the Healthy Ageing in Intellectual Disability (HA-ID) study. The aim of this study was to establish (1) the prevalence of overweight,…

  12. Suicide behavior in persons with intellectual disability.

    Science.gov (United States)

    Merrick, Joav; Merrick, Efrat; Lunsky, Yona; Kandel, Isack

    2005-09-08

    Suicide is today in the Western world one of the leading causes of death and most people have had suicidal ideation at some time during their life. In the population of persons with intellectual disability some researchers have thought that impaired intellectual capacity could act as a buffer to suicidal behavior, but the fact is that the few studies conducted in that population contest this assumption and showed that the characteristics of suicidality in this population are very similar to persons without intellectual disability. This paper reviews the studies conducted and describe the symptomatology in this population. Professionals working with this population should therefore be aware of and assess for this behavior. Sadness or depression are symptoms that could indicate later suicidal behavior.

  13. Suicide Behavior in Persons with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Joav Merrick

    2005-01-01

    Full Text Available Suicide is today in the Western world one of the leading causes of death and most people have had suicidal ideation at some time during their life. In the population of persons with intellectual disability some researchers have thought that impaired intellectual capacity could act as a buffer to suicidal behavior, but the fact is that the few studies conducted in that population contest this assumption and showed that the characteristics of suicidality in this population are very similar to persons without intellectual disability. This paper reviews the studies conducted and describe the symptomatology in this population. Professionals working with this population should therefore be aware of and assess for this behavior. Sadness or depression are symptoms that could indicate later suicidal behavior.

  14. Therapy of depression in persons with intellectual disability

    OpenAIRE

    Tomić, Katarina; Mihajlović, Goran

    2012-01-01

    Considering the high frequency of depression among people with intellectual disability, the question of an appropriate therapeutic approach seems to be very important. The propper choice of therapy depends of the right diagnosis, which could present a problem, because of the atipical presentation of simptoms. Still, the efforts made to overcome onesidedness in treating depression among people with intellectual disability, which was seen mostly through insisting on psychopharmacotherapy, have ...

  15. PREVALENCE OF REFRACTIVE ERROR, STRABISMUS AND AMBLYOPIA AMONG CHILDREN WITH NORMAL DEVELOPMENT OR GLOBAL DEVELOPMENTAL DELAY/INTELLECTUAL DISABILITY ATTENDING OPHTHALMOLOGY OPD AT KLES HOSPITAL, BELAGAVI- A RETROSPECTIVE STUDY

    Directory of Open Access Journals (Sweden)

    Smitha K. S

    2017-04-01

    Full Text Available BACKGROUND Global developmental delay/intellectual disability are on a rise in children in the present time. Ocular and visual anomalies are frequently associated with it of which refractive errors are the most frequent. This if goes unnoticed leads to strabismus and amblyopia. MATERIALS AND METHODS This study aims to assess the prevalence of refractive error, strabismus and amblyopia among children with normal development or global developmental delay/intellectual disability attending ophthalmology OPD at KLES Hospital, Belagavi. Case records of all 200 new patients less than or equal to 12 years of age group who attended KLES, Dr. Prabhakar Kore Hospital between January 2015 and December 2015 were retrospectively reviewed. RESULTS The male:female ratio was 1.22:1. Out of the total evaluated 200 cases, 130 cases were with normal development and 70 with GDD/ID. Refractive errors were 85%, whereas the cases of amblyopia was 45.50% and strabismus 39.50%. Amblyopia with refractive error having GDD/ID was stastically significant as compared to amblyopia with refractive error having normal development (p=0.001. CONCLUSION Refractive error was the most common ocular disorder seen. Refractive error with amblyopia is more in children with GDD/ID as compared to normal children. Owing to the high percentage of visual anomalies, ophthalmological referral becomes essential in children with developmental anomalies.

  16. INTELLECTUAL DISABILITY IN INDIVIDULAS WITH MENTAL DISORDERS

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    Miodrag VUJOVIKJ

    2017-10-01

    Full Text Available Introduction: A successful treatment of any disorder, condition or disease requires timely detection and accurate diagnostics. This is precisely what is missing in individuals with a dual diagnosis of an intellectual disability and a mental disorder, both in Macedonia and worldwide. In order to overcome the deficiencies in the treatment, and to improve the quality of life for these individuals as well, they should be detected on time and then approached with diagnosing and preparation of a plan for treating them. Goal: The main goal of this research is obtaining a result of the presence of intellectual disability among institutionalized individuals with mental disorders on the basis of the type of mental disorder, the age and the gender of the person. Also, one of the main goals is presenting the mental deterioration in individuals with mental disorders, as well as its connection with the age of the individuals with mental disorder. Despite having the basic goals, this research, as well as research on this subject from all over the world, serves as an example for raising the awareness about the diversity and atypical presentations of the patients with a dual diagnosis of intellectual disability and mental disorder. Methodology: For achieving the goal and tasks of this research, 50 individuals with different diagnosis of mental disorder, different age and different gender were tested. The sample that took part in this research was a suitable sample, i.e. individuals that during the research were hospitalized in the below mentioned public health institution. The research took place in PHI Psychiatric Hospital „Skopje“ from Skopje. For collecting the data in this research, as well as for achieving the goals of the research, two methods, three research techniques and two instruments were used. The methods that were used during this research included the method of comparative analysis and the method of correlation analysis, while the techniques

  17. Epilepsy and Intellectual and Developmental Disabilities

    Science.gov (United States)

    Oguni, Hirokazu

    2013-01-01

    The co-occurrence of epilepsy in people with intellectual disabilities (ID) and other developmental disabilities (DD) has received attention because it has a significant negative impact on health, well-being, and quality of life. The current research investigating the frequency and form of epilepsy in children with ID and DD is reviewed, with…

  18. 'It's our everyday life' - The perspectives of persons with intellectual disabilities in Norway.

    Science.gov (United States)

    Witsø, Aud Elisabeth; Hauger, Brit

    2018-01-01

    This study illuminates how adults with intellectual disabilities understand and describe their everyday life and its shortcomings when it comes to equal rights in the context of Norwegian community living. An inclusive research design, including nine persons with mild intellectual disability, two university researchers and two intellectual disability nurses from the municipality, was undertaken. An inductive thematic analysis of data identified three key themes: everyday life - context, rhythm and structure, social participation and staff - an ambiguous part of everyday life. Results show that service provision had institutional qualities; participants experienced lack of information and reduced possibilities for social inclusion and community participation like everyone else. More attention on the role of policy development, support staff and leadership, in relation to facilitating an everyday life with more user involvement, social inclusion and community participation of people needing support, is essential. Participatory, appreciative, action and reflection in workshops for persons with intellectual disabilities and support staff represent a promising approach to promote the voices and interests of persons with intellectual disabilities. Accessible abstract This article tells you about the everyday life of people with intellectual disabilities living in Norway. Nine people with intellectual disabilities worked together with two university researchers and two intellectual disability nurses in the community, in workshops. The people with intellectual disabilities liked to have their own apartment and going to work every day. They said that they wanted more social participation with friends and more participation in activities in the community, just like everyone else. They wanted to be treated with more respect by their staff. All participants in the project saw great value in working together and some of them are working together in a new project about

  19. Short-term memory coding in children with intellectual disabilities.

    Science.gov (United States)

    Henry, Lucy

    2008-05-01

    To examine visual and verbal coding strategies, I asked children with intellectual disabilities and peers matched for MA and CA to perform picture memory span tasks with phonologically similar, visually similar, long, or nonsimilar named items. The CA group showed effects consistent with advanced verbal memory coding (phonological similarity and word length effects). Neither the intellectual disabilities nor MA groups showed evidence for memory coding strategies. However, children in these groups with MAs above 6 years showed significant visual similarity and word length effects, broadly consistent with an intermediate stage of dual visual and verbal coding. These results suggest that developmental progressions in memory coding strategies are independent of intellectual disabilities status and consistent with MA.

  20. Motor Performance of Children with Mild Intellectual Disability and Borderline Intellectual Functioning

    Science.gov (United States)

    Vuijk, P. J.; Hartman, E.; Scherder, E.; Visscher, C.

    2010-01-01

    Background: There is a relatively small body of research on the motor performance of children with mild intellectual disabilities (MID) and borderline intellectual functioning (BIF). Adequate levels of motor skills may contribute to lifelong enjoyment of physical activity, participation in sports and healthy lifestyles. The present study compares…

  1. 228 THE INTELLECTUAL DISABLED (MENTALLY IMPAIRED) IN ...

    African Journals Online (AJOL)

    Elizabeth

    The Intellectual disabled child is characterized by significantly sub average general intellectual ... by abnormal development, learning difficulties, and problem in social ... softened and classifications redefined some what to mild (IQ of 55 –70) moderate .... parents do not like the isolation of their children from normal children.

  2. Crime and victimisation in people with intellectual disability: a case linkage study.

    Science.gov (United States)

    Fogden, Billy C; Thomas, Stuart D M; Daffern, Michael; Ogloff, James R P

    2016-05-28

    Studies have suggested that people with intellectual disability are disproportionately involved in crime both as perpetrators and victims. A case linkage design used three Australian contact-level databases, from disability services, public mental health services and police records. Rates of contact, and official records of victimisation and criminal charges were compared to those in a community sample without intellectual disability. Although people with intellectual disability were significantly less likely to have an official record of victimisation and offending overall, their rates of violent and sexual victimisation and offending were significantly higher. The presence of comorbid mental illness considerably increased the likelihood of victimisation and offending; several sex differences were also noted. People with intellectual disability are at increased risk for both violent and sexual victimisation and offending. The presence of comorbid mental illness aggravates the risk of offending and victimisation. Future research should focus on a more nuanced exploration of the risks associated with intellectual disability and specific mental disorders and related indices of complexity.

  3. Stressful Social Interactions Experienced by Adults with Mild Intellectual Disability

    Science.gov (United States)

    Hartley, Sigan L.; MacLean, William E., Jr.

    2009-01-01

    Adults with intellectual disability are vulnerable to stressful social interactions. We determined frequency and severity of various stressful social interactions, identified the social partners in these interactions, and examined the specific interpersonal skill difficulties of 114 adults with mild intellectual disability. Participants'…

  4. Contextual Predictors of Self-Determined Actions in Students with and without Intellectual Disability

    Science.gov (United States)

    Mumbardó-Adam, Cristina; Shogren, Karrie A.; Guàrdia-olmos, Joan; Giné, Climent

    2017-01-01

    Research in the field of intellectual disability suggests that promotion of self-determination triggers positive transition outcomes for youth with intellectual disability. This article examines the contributions of personal and environmental variables in predicting self-determined action in students with and without intellectual disability. The…

  5. Young children's attitudes toward peers with intellectual disabilities: effect of the type of school.

    Science.gov (United States)

    Georgiadi, Maria; Kalyva, Efrosini; Kourkoutas, Elias; Tsakiris, Vlastaris

    2012-11-01

    This study explored typically developing children's attitudes towards peers with intellectual disabilities, with special reference to the type of school they attended. Two hundred and fifty-six Greek children aged 9-10 (135 in inclusive settings) completed a questionnaire and an adjective list by Gash (European Journal of Special Needs Education 1993; 8, 106) and drew a child with intellectual disabilities, commenting also on their drawings. Typically developing children expressed overall neutral attitudes towards peers with intellectual disabilities. Type of school differentiated their attitudes, with children from inclusive settings being more positive towards peers with intellectual disabilities and choosing less negative adjectives to describe them than children from non-inclusive settings. Girls and students who expressed more positive social, emotional and overall attitudes towards students with intellectual disabilities chose more positive adjectives to describe a child with intellectual disabilities. It was also found that children from inclusive settings drew children with intellectual disabilities as more similar to a child with Down syndrome in comparison with children from non-inclusive settings. Effective inclusive practices should be promoted to foster social acceptance of students with intellectual disabilities. © 2012 Blackwell Publishing Ltd.

  6. Mothering with an Intellectual Disability: A Phenomenological Exploration of Making Infant-Feeding Decisions

    Science.gov (United States)

    Guay, Amanda; Aunos, Marjorie; Collin-Vézina, Delphine

    2017-01-01

    Background: Mothers with intellectual disability are less likely than mothers without intellectual disability to breastfeed their infants, but there is little literature that addresses infant-feeding decisions among this population. This study explores experiences of mothers with intellectual disability in making and carrying out infant-feeding…

  7. Teaching Reading for Students with Intellectual Disabilities: A Systematic Review

    Science.gov (United States)

    Alnahdi, Ghaleb Hamad

    2015-01-01

    A systematic review of the literature related to instructional strategies to improve reading skills for students with intellectual disabilities was conducted. Studies reviewed were within three categories; early reading approaches, comprehensive approaches, and one method approach. It was concluded that students with intellectual disabilities are…

  8. Feasibility of Eight Physical Fitness Tests in 1,050 Older Adults with Intellectual Disability: Results of the Healthy Ageing with Intellectual Disabilities Study

    Science.gov (United States)

    Hilgenkamp, Thessa I. M.; van Wijck, Ruud; Evenhuis, Heleen M.

    2013-01-01

    Although physical fitness is relevant for well-being and health, knowledge on the feasibility of instruments to measure physical fitness in older adults with intellectual disability (ID) is lacking. As part of the study Healthy Ageing with Intellectual Disabilities with 1,050 older clients with ID in three Dutch care services, the feasibility of 8…

  9. Understanding suicide and disability through three major disabling conditions: Intellectual disability, spinal cord injury, and multiple sclerosis.

    Science.gov (United States)

    Giannini, Margaret J; Bergmark, Brian; Kreshover, Samantha; Elias, Eileen; Plummer, Caitlin; O'Keefe, Eileen

    2010-04-01

    Disability is not a category of disease but rather relates to the physical, sensory, cognitive, and/or mental disorders that substantially limit one or more major life activities. These functional limitations have been found to be predictive of suicide, with psychiatric comorbidities increasing the risk for suicide. Enormous gaps exist in the understanding of the relationship between disability and suicide. We reviewed the current literature addressing the prevalence of and risk factors for suicide among persons with three major disabling conditions and identify priorities for future research. We performed a literature review investigating the relationship between three major disabilities (intellectual disability, spinal cord injury, multiple sclerosis) and suicide. To ensure thorough evaluation of the available literature, we searched PubMed, the Cochrane Library, and Google Scholar with terms including "suicide," "disability," "intellectual disability," "spinal cord injury," "multiple sclerosis," and permutations thereof. By this method we evaluated 110 articles and included 21 in the review. Suicide rates are significantly higher among persons with multiple sclerosis and spinal cord injury than in the general population. A more nuanced picture of suicide rates and risk factors exists for the intellectual disability population, in which it appears that rates of suicide risk factors are higher than among the general population while suicide rates may be lower. The highest rates of suicide are reported among study populations of persons with multiple sclerosis, followed by persons with spinal cord injury, and then individuals with intellectual disability. Suicide among persons with disabilities is a complex and pressing public health concern. Urgent research priorities include (1) valid estimates of suicide rates among persons with disabilities by age cohort; (2) assessment of the predictive importance of suicide risk factors; and (3) determination of best

  10. Social anxiety and parental overprotection in young adults with and without intellectual disabilities.

    Science.gov (United States)

    Hemm, Cahley; Dagnan, Dave; Meyer, Thomas D

    2018-05-01

    Developmental literature highlights peer relationships and parental overprotection as factors implicated in the development of social anxiety. These factors are highly prevalent in the lives of people with intellectual disabilities; however research has not examined whether these factors are associated with social anxiety for this population. Twenty-one individuals without intellectual disabilities and 21 individuals with intellectual disabilities (aged 16-24 years) completed the Social Anxiety Scale for Adolescents with follow-up questions, the Glasgow Anxiety Scale-Intellectual disabilities and the parental overprotection subscale of the Parental Bonding Instrument with follow-up questions. Aspects of general and social anxiety were significantly greater in the intellectual disabilities group. There were no significant differences in parental overprotection between groups, however, qualitative analyses revealed differences in experiences of social anxiety and parental overprotection. Further research into factors associated with social anxiety in people with intellectual disabilities may inform adaptations to therapies and early intervention. © 2017 John Wiley & Sons Ltd.

  11. Bereavement process of people with intellectual disability

    Directory of Open Access Journals (Sweden)

    Virginia MUÑIZ FERNÁNDEZ

    2018-03-01

    Full Text Available The main goal of this work is focused on detecting the support needs of people with intellectual disabilities during the bereavement process in order to guide about professional interventions and practices aimed to provide more adequate individualized support to their real needs. The sample consists of 93 adults with ID, with ages ranging from 21 to 72 years old (M = 49.9; SD = 11.79, who have suffered the loss of a significant person. The professionals who worked with them and knew them well completed two questionnaires: Staff Attitude Questionnaire (SAQ and Bereavement Needs Assessment (BNAT. Beside descriptive analyses, results were analyzed according to several variables (i.e., gender, age, level of intellectual disability, and level of dependency. Level of intellectual disability and level of dependency were the ones that resulted significant. In order to provide the best answer to their needs, good practices are suggested such as facilitating the understanding of loss, helping them express feelings and emotions, dealing with each case individually, and encouraging to continue education about death.

  12. What’s the Harm? Harms in Research with Adults with Intellectual Disability

    Science.gov (United States)

    McDonald, Katherine E.; Conroy, Nicole E.; Olick, Robert S.

    2017-01-01

    Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability. PMID:28095059

  13. Pragmatic skills of children and youth with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Brojčin Branislav

    2016-01-01

    Full Text Available Pragmatic competence means the use of language in social context. Persons with intellectual disability experience numerous problems in this aspect of communication, but they are relatively pragmatically skilled in well-known situations, in which they are not subjected to significant cognitive and social requirements. The aim of this paper is to determine the level of pragmatic abilities of children and youth with mild intellectual disability and to perceive its relation to chronological age, speech comprehension, speech production, the level of intellectual functioning, gender and bilingualism of the participants. The level of pragmatic competence was tested in the sample of 120 children with mild intellectual disability, aged between 8 and 16, by using the Test of pragmatic language competence. The Clinical scales of Luria-Nebraska neuropsychological battery for children were also used. The results obtained in this research suggest that general level of achievement of children with mild intellectual disability in this domain of development is far below the expectations based on their chronological age. Significant progress appears between 12 and 14 years of age, but there are also two critical periods in their development. Important relations of pragmatic skills with speech comprehension, speech production, chronological age and intellectual level were established.

  14. Co-researching with people who have intellectual disabilities: insights from a national survey.

    Science.gov (United States)

    O'Brien, Patricia; McConkey, Roy; García-Iriarte, Edurne

    2014-01-01

    Inclusive research with people with intellectual disabilities is growing internationally but with few studies examining its feasibility. In undertaking a national study exploring what life was like in Ireland for people with intellectual disabilities, a community of practice was developed involving a core group of co-researchers: five people with intellectual disabilities, four university researchers and three service support staff. An additional cadre of 15 co-researchers with intellectual disabilities was recruited to undertake data gathering and analysis with 23 focus groups involving 168 participants. The research experience was documented through oral feedback, progress reports, minutes and a project review. The key learning is documented arising from the setting up of an inclusive advisory group and implementation of each of six research steps. The study demonstrates feasibility and the added value of university co-researchers recruiting and developing skills together with co-researchers with intellectual disabilities. Topics for further research and development are identified. This paper tells you about how people with intellectual disabilities worked with a group of university researchers. Both groups were called co-researchers and together they ran 23 focus groups across Ireland. People with intellectual disabilities talked about their lives and what could make them better. They said they needed to have a good place to live; a job; enough money; relationships; and acceptance as respected citizens. The university co-researchers wrote about what it was like doing research together and how people with intellectual disabilities joined the advisory group; decided on the questions; ran focus groups; and presented findings. Together they grew into a community of researchers where the university co-researchers shared their research skills and people with intellectual disabilities shared what it was like living with a disability. They both saw great value in

  15. ADAT3-related intellectual disability: Further delineation of the phenotype.

    Science.gov (United States)

    El-Hattab, Ayman W; Saleh, Mohammed A; Hashem, Amal; Al-Owain, Mohammed; Asmari, Ali Al; Rabei, Hala; Abdelraouf, Hanem; Hashem, Mais; Alazami, Anas M; Patel, Nisha; Shaheen, Ranad; Faqeih, Eissa A; Alkuraya, Fowzan S

    2016-05-01

    ADAT3-related intellectual disability has been recently described in 24 individuals from eight Saudi families who had cognitive impairment and strabismus. Other common features included growth failure, microcephaly, tone abnormalities, epilepsy, and nonspecific brain abnormalities. A single homozygous founder mutation (c.382G>A:p.(V128M)) in the ADAT3 gene, which encodes a protein that functions in tRNA editing, was identified in all affected individuals. In this report, we present additional 15 individuals from 11 families (10 Saudis and 1 Emirati) who are homozygous for the same founder mutation. In addition to the universal findings of intellectual disability and strabismus, the majority exhibited microcephaly and growth failure. Additional features not reported in the original cohort include dysmorphic facial features (prominent forehead, up-slanted palpebral fissures, epicanthus, and depressed nasal bridge), behavioral problems (hyperactivity and aggressiveness), recurrent otitis media, and growth hormone deficiency. ADAT3-related intellectual disability is an important recognizable cause of intellectual disability in Arabia. © 2016 Wiley Periodicals, Inc.

  16. Monitoring the prevalence of severe intellectual disability in children across Europe

    DEFF Research Database (Denmark)

    van Bakel, Marit; Einarsson, Ingolfur; Arnaud, Catherine

    2014-01-01

    Our aim was to study the feasibility of creating a framework for monitoring and undertaking collaborative research on intellectual disability at the European level, based on existing databases of children with such disability.......Our aim was to study the feasibility of creating a framework for monitoring and undertaking collaborative research on intellectual disability at the European level, based on existing databases of children with such disability....

  17. The main signs of ageing in people with intellectual disability.

    Science.gov (United States)

    Wark, Stuart; Hussain, Rafat; Edwards, Helen

    2016-12-01

    Investigations around ageing with an intellectual disability have increased substantially in the past three decades. A research gap continued to exist regarding the detection of ageing issues in this cohort of people, particularly in rural areas where access to specialist support continued to be limited. The purpose of this study was to identify the main signs of ageing in rural people with intellectual disabilities. A multi-round Delphi design was used to examine what signs of ageing were observed by disability support staff, who assisted people with intellectual disability. The project was conducted across nine of the ten rural regions (as defined by the government funding body) in New South Wales (NSW). There were 31 participants representing 14 non-government organisations. The group was composed of 26 women and 5 men, with a mean age of 47 years, who averaged 10-year experience with people with intellectual disabilities. The objective was to gain the direct input of rurally based disability workers to identify the main signs of ageing in people with intellectual disabilities. Thirty-two specific signs of ageing, including emerging mental health issues, grief, loss of identity and aggression, were identified. A thematic analysis indicated two main categories: mental/emotional functioning and physical functioning. When carers have the information and skills needed to identify the main signs of ageing, they can more accurately recognise and address potential problems in a timely manner. Such understandings have the potential to reduce premature admissions to residential aged-care. © 2016 National Rural Health Alliance Inc.

  18. The Siblings Relationship of Adolescents with and without Intellectual Disabilities

    Science.gov (United States)

    Begum, Gazi; Blacher, Jan

    2011-01-01

    The sibling relationship of adolescents with and without intellectual disabilities was examined. Participants were 70 sibling dyads--each dyad was comprised of one 12-year old adolescent with (N = 23) or without intellectual disabilities (N = 47). Sibling relationships, behavior problems, and social skills were assessed using mother reports.…

  19. Parenting Training for Intellectually Disabled Parents: A Cochrane Systematic Review

    Science.gov (United States)

    Coren, Esther; Thomae, Manuela; Hutchfield, Jemeela

    2011-01-01

    Objectives: This article presents a Cochrane/Campbell systematic review of the evidence on the effect of parent training to support the parenting of parents with intellectual disabilities. Method: Randomized controlled trials (RCTs) comparing parent training interventions for parents with intellectual disability with usual care or with a control…

  20. Families' perceptions of the contribution of intellectual disability clinical nurse specialists in Ireland.

    Science.gov (United States)

    Doody, Owen; Slevin, Eamonn; Taggart, Laurence

    2018-01-01

    To explore families' perceptions of the contribution of clinical nurse specialists in intellectual disability nursing in Ireland. Clinical nurse specialists roles have developed over the years and are seen as complex and multifaceted, causing confusion, frustration and controversy. 2001 saw the formal introduction of clinical nurse specialists roles in Ireland across nursing including intellectual disability. A exploratory qualitative approach using semistructured one-to-one interviews with 10 family members regarding their perceptions of the clinical nurse specialists in intellectual disability. Data were audio-recorded, transcribed and analysed using Burnard's framework. Ethical approval was gained and access granted by service providers. The study highlights that intellectual disability clinical nurse specialists contribute and support care deliver across a range of areas, including personal caring, supporting and empowering families, liaison, education and leadership. Clinical nurse specialists have an important role and contribution in supporting families and clients, and Ireland is in a unique position to develop knowledge regarding specialist care for people with intellectual disability that can be shared nationally and internationally. Ireland is in a unique position to develop knowledge regarding specialist care for people with intellectual disability that can be shared and adapted by other healthcare professionals in other countries that do not have a specialised intellectual disability nurses. © 2017 John Wiley & Sons Ltd.

  1. Knowledge about the joy in children with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Jasielska Aleksandra

    2017-06-01

    Full Text Available The aim of this study was to characterize the knowledge about the joy in children with mild intellectual disability. The premises relating to mental functioning of these children suggest that this knowledge is poorer and less complex than the knowledge of their peers in the intellectual norm. The study used the authoring tool to measure children’s knowledge of emotions including the joy. This tool takes into account the cognitive representation of the basic emotions available in three codes: image, verbal, semantic and interconnection between the codes - perception, symbolization and conceptualization which perform the functions of perception, expression and understanding. The study included children with the intellectual norm (N = 30 and children with mild intellectual disability (N = 30. The obtained results mainly indicate the differences in how the happiness is understood by particular groups, to the detriment of children with disability. The character of the results is largely determined by the level of organization of knowledge about the joy and accompanying mental operations. The results will be discussed, among others, in the context of the adjustment of the programs of lasting increase of happiness for people with intellectual disability.

  2. Evaluating the characteristics of the grieving process in people with intellectual disability.

    Science.gov (United States)

    Alcedo Rodríguez, M Ángeles; Cristóbal Fernández, Leticia; Gómez Sánchez, Laura E; Arias González, Víctor B

    2018-04-23

    The aim of this study was to examine the characteristics associated with the grieving process among a population with intellectual disability and the influence of particular variables. The sample was composed of 380 participants with intellectual disability, on whose behalf 149 professionals completed a 20-item questionnaire with four Likert-type answer options, developed to evaluate the grieving process: Inventory of Grief and Coping Strategies in Intellectual Disability (IGCS-ID). The IGCS-ID shows adequate levels of reliability. It covers three dimensions: understanding of the concept of death, coping with the loss and post-bereavement reactions. The level of intellectual disability, the time elapsed since the loss and the residential setting gave rise to significant differences in the three dimensions based on the participants. An assessment of the grieving process would help to put in place effective resources to help people with intellectual disability overcome the loss and cope with the changes that it brings. © 2018 John Wiley & Sons Ltd.

  3. Eye movement desensitization and reprocessing in an adolescent with epilepsy and mild intellectual disability

    NARCIS (Netherlands)

    Rodenburg, R.; Benjamin, A.; Meijer, A.M.; Jongeneel, R.

    2009-01-01

    Intellectual disability is a comorbid condition in epilepsy. People with epilepsy and intellectual disability are at high risk of developing behavioral problems. Among the many contributors to behavioral problems in people with epilepsy and intellectual disability are those of traumatic experiences.

  4. The Role of Learning Disability Nurses in Promoting Cervical Screening Uptake in Women with Intellectual Disabilities: A Qualitative Study

    Science.gov (United States)

    Lloyd, Jennifer L.; Coulson, Neil S.

    2014-01-01

    Research suggests that the uptake of cervical screening by women with intellectual disabilities (commonly known as learning disabilities within UK policy frameworks, practice areas and health services) is poor compared to women without intellectual disabilities. The present study explored learning disability nurses' experiences of supporting women…

  5. The role of learning disability nurses in promoting cervical screening uptake in women with intellectual disabilities: A qualitative study.

    Science.gov (United States)

    Lloyd, Jennifer L; Coulson, Neil S

    2014-06-01

    Research suggests that the uptake of cervical screening by women with intellectual disabilities (commonly known as learning disabilities within UK policy frameworks, practice areas and health services) is poor compared to women without intellectual disabilities. The present study explored learning disability nurses' experiences of supporting women with intellectual disabilities to access cervical screening in order to examine their role in promoting attendance and elucidate potential barriers and facilitators to uptake. Ten participants recruited from a specialist learning disability service completed a semi-structured interview and data were analysed using experiential thematic analysis. Identified individual barriers included limited health literacy, negative attitudes and beliefs and competing demands; barriers attributed to primary care professionals included time pressures, limited exposure to people with intellectual disabilities and lack of appropriate knowledge, attitudes and skills. Attendance at cervical screening was facilitated by prolonged preparation work undertaken by learning disability nurses, helpful clinical behaviours in the primary care context and effective joint working. © The Author(s) 2014.

  6. Non-verbal communication between nurses and people with an intellectual disability: a review of the literature.

    Science.gov (United States)

    Martin, Anne-Marie; O'Connor-Fenelon, Maureen; Lyons, Rosemary

    2010-12-01

    This article critically synthesizes current literature regarding communication between nurses and people with an intellectual disability who communicate non-verbally. The unique context of communication between the intellectual disability nurse and people with intellectual disability and the review aims and strategies are outlined. Communication as a concept is explored in depth. Communication between the intellectual disability nurse and the person with an intellectual disability is then comprehensively examined in light of existing literature. Issues including knowledge of the person with intellectual disability, mismatch of communication ability, and knowledge of communication arose as predominant themes. A critical review of the importance of communication in nursing practice follows. The paucity of literature relating to intellectual disability nursing and non-verbal communication clearly indicates a need for research.

  7. Exploring the self-concepts of persons with intellectual disabilities.

    Science.gov (United States)

    Li, Eria Ping-Ying; Tam, Alan Sing-Fai; Man, David Wai-Kwong

    2006-03-01

    This study explores the self-concepts of Hong Kong Chinese with intellectual disabilities. Face-to-face and individual interviews were conducted in Cantonese, using the Chinese version of the Adult Source of Self-Esteem Inventory (ASSEI) together with three open-ended questions to explore the participants' self-conceptions in different life domains. An opportunity sample of 135 young adults with intellectual disabilities was interviewed. The findings showed that the family self, the social self and achievement in school and work were the self-concept attributes most important to the participants. The participants of this study had a higher total self-concept than that of a comparison group of people without disabilities when the participants used the in-group social comparison to maintain positive self-perception. The importance of partnership with family, self-concept enhancement strategies and quality employment service are discussed in order to facilitate people with intellectual disabilities to develop more positive self-concepts and thus achieve better community integration.

  8. LEARNING PROBLEMS IN CHILDREN WITH MILD INTELLECTUAL DISABILITY

    Directory of Open Access Journals (Sweden)

    Keskinova Angelka

    2018-04-01

    Full Text Available School failure is one of the more complex, more difficult and unfortunately frequent problem that modern school meets. Many factors can cause school failure, such as: child development characteristics, family and school-originated factors. The purpose of the research is analysis of the specific learning problems in students with a mild intellectual disability. For our research we used ACADIA test, which contains 13 subtests for assessing the overall individual functioning. The research involved 144 students. We divided the sample into two groups, children with intellectual disability (our target group and control group. We found that generally all students with the intellectual disability have special learning problems. According to individual subtests analysis we concluded that the ability for visual association is best developed among these students while on the subtest for auditory memory they achieved worse results. With the analysis of the control group we found that 13.75% of the students have special learning problems.

  9. Organising healthcare services for persons with an intellectual disability.

    Science.gov (United States)

    Balogh, Robert; McMorris, Carly A; Lunsky, Yona; Ouellette-Kuntz, Helene; Bourne, Laurie; Colantonio, Angela; Gonçalves-Bradley, Daniela C

    2016-04-11

    When compared to the general population, persons with an intellectual disability have lower life expectancy, higher morbidity, and more difficulty finding and obtaining healthcare. Organisational interventions are used to reconfigure the structure or delivery of healthcare services. This is the first update of the original review. To assess the effects of organisational interventions of healthcare services for the mental and physical health problems of persons with an intellectual disability. For this update we searched CENTRAL, MEDLINE, EMBASE, CINAHL and other databases, from April 2006 to 4 September 2015. We checked reference lists of included studies and consulted experts in the field. Randomised controlled trials of organisational interventions of healthcare services aimed at improving care of mental and physical health problems of adult persons with an intellectual disability. We employed standard methodological procedures as outlined in the Cochrane Handbook of Systematic Reviews of Interventions, in addition to specific guidance from the Cochrane Effective Practice and Organisation of Care (EPOC) Group. We identified one new trial from the updated searches.Seven trials (347 participants) met the selection criteria. The interventions varied but had common components: interventions that increased the intensity and frequency of service delivery (4 trials, 200 participants), community-based specialist behaviour therapy (1 trial, 63 participants), and outreach treatment (1 trial, 50 participants). Another trial compared two active arms (traditional counselling and integrated intervention for bereavement, 34 participants).The included studies investigated interventions dealing with the mental health problems of persons with an intellectual disability; none focused on physical health problems. Four studies assessed the effect of organisational interventions on behavioural problems for persons with an intellectual disability, three assessed care giver burden, and

  10. Sibling Relationship Quality and Social Functioning of Children and Adolescents with Intellectual Disability

    Science.gov (United States)

    Floyd, Frank J.; Purcell, Susan E.; Richardson, Shana S.; Kupersmidt, Janis B.

    2009-01-01

    We examined sibling relationships for children and adolescents with intellectual disability and assessed implications for their social functioning. Targets (total N = 212) had either intellectual disability, a chronic illness/physical disability, or no disability. Nontarget siblings reported on relationship quality, sibling interactions were…

  11. Unsupportive parenting and internalising behaviour problems in children with or without intellectual disability.

    Science.gov (United States)

    Rodas, N V; Zeedyk, S M; Baker, B L

    2016-12-01

    Children with intellectual disability (ID) are at heightened risk for developing other psychological disorders, including internalising disorders. Anxiety and depression have been shown to be familial, and parenting is a contributing factor to the development of these disorders. To extend this research, we examined the extent to which mother and father depression and negative, unsupportive parenting related to child internalising behaviour problems, in children with ID or with typical development (TD). Participants were 156 mother and father dyads and their children, assessed at ages 4 and 5 years. We examined parent (mother and father) and child delay status (ID and TD) in relation to measures of both observed and self-reported unsupportive, negative parenting. Utilising moderation models, we examined the relationship between parental depression, unsupportive/negative parenting and child internalising behaviour problems. Unsupportive, negative parenting differed based on parent gender and child delay status. In addition, father depression was a significant moderator of the relationship between unsupportive parenting and child internalising behaviour problems. Children with ID were found to be at higher risk of experiencing unsupportive, negative parenting than children with TD. Children of depressed fathers were especially vulnerable to developing internalising behaviour problems in an unsupportive parenting context. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  12. Short-Term Memory Coding in Children With Intellectual Disabilities

    OpenAIRE

    Henry, L.; Conners, F.

    2008-01-01

    To examine visual and verbal coding strategies, I asked children with intellectual disabilities and peers matched for MA and CA to perform picture memory span tasks with phonologically similar, visually similar, long, or nonsimilar named items. The CA group showed effects consistent with advanced verbal memory coding (phonological similarity and word length effects). Neither the intellectual disabilities nor MA groups showed evidence for memory coding strategies. However, children in these gr...

  13. Mortality Among Adults With Intellectual Disability in England: Comparisons With the General Population

    Science.gov (United States)

    Hosking, Fay J.; Shah, Sunil M.; Harris, Tess; DeWilde, Stephen; Beighton, Carole; Cook, Derek G.

    2016-01-01

    Objectives. To describe mortality among adults with intellectual disability in England in comparison with the general population. Methods. We conducted a cohort study from 2009 to 2013 using data from 343 general practices. Adults with intellectual disability (n = 16 666; 656 deaths) were compared with age-, gender-, and practice-matched controls (n = 113 562; 1358 deaths). Results. Adults with intellectual disability had higher mortality rates than controls (hazard ratio [HR] = 3.6; 95% confidence interval [CI] = 3.3, 3.9). This risk remained high after adjustment for comorbidity, smoking, and deprivation (HR = 3.1; 95% CI = 2.7, 3.4); it was even higher among adults with intellectual disability and Down syndrome or epilepsy. A total of 37.0% of all deaths among adults with intellectual disability were classified as being amenable to health care intervention, compared with 22.5% in the general population (HR = 5.9; 95% CI = 5.1, 6.8). Conclusions. Mortality among adults with intellectual disability is markedly elevated in comparison with the general population, with more than a third of deaths potentially amenable to health care interventions. This mortality disparity suggests the need to improve access to, and quality of, health care among people with intellectual disability. PMID:27310347

  14. Intelligence and specific cognitive functions in intellectual disability: implications for assessment and classification.

    Science.gov (United States)

    Bertelli, Marco O; Cooper, Sally-Ann; Salvador-Carulla, Luis

    2018-03-01

    Current diagnostic criteria for intellectual disability categorize ability as measured by IQ tests. However, this does not suit the new conceptualization of intellectual disability, which refers to a range of neuropsychiatric syndromes that have in common early onset, cognitive impairments, and consequent deficits in learning and adaptive functioning. A literature review was undertaken on the concept of intelligence and whether it encompasses a range of specific cognitive functions to solve problems, which might be better reported as a profile, instead of an IQ, with implications for diagnosis and classification of intellectual disability. Data support a model of intelligence consisting of distinct but related processes. Persons with intellectual disability with the same IQ level have different cognitive profiles, based on varying factors involved in aetiopathogenesis. Limitations of functioning and many biopsychological factors associated with intellectual disability are more highly correlated with impairments of specific cognitive functions than with overall IQ. The current model of intelligence, based on IQ, is of limited utility for intellectual disability, given the wide range and variability of cognitive functions and adaptive capacities. Assessing level of individual impairment in executive and specific cognitive functions may be a more useful alternative. This has considerable implications for the revision of the International Classification of Diseases and for the cultural attitude towards intellectual disability in general.

  15. Family perceptions of intellectual disability: Understanding and support in Dar es Salaam

    Science.gov (United States)

    2012-01-01

    When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability. PMID:28729979

  16. Injury among adolescents with intellectual disability: A prospective cohort study.

    Science.gov (United States)

    White, David; McPherson, Lyn; Lennox, Nicholas; Ware, Robert S

    2018-04-12

    Injury is the leading cause of mortality and morbidity in adolescents worldwide, and injury rates have been shown to be higher among youth with intellectual disability. Despite this, injury among adolescents with intellectual disability remains poorly investigated. This study aimed to identify characteristics associated with injury among adolescents with intellectual disability living in the community. A cohort of adolescents with intellectual disability living in southern Queensland, Australia was investigated prospectively between January 2006 and June 2010. Personal characteristics were collected via postal questionnaire. Injury information, including mechanism and location of injury, was extracted from general practitioner records. The association between demographic, social and clinical characteristics of participants and episodes of injury was investigated using negative binomial regression. A total of 289 injuries were recorded from 432 participants over 1627.3 years of study-time. The overall annual injury incidence was 17.5 (95%CI 14.7, 20.9) per 100 person years. Presence of ADHD and less severe disability was associated with increased risk of injury. Down syndrome and reduced verbal communication capacity were associated with decreased risk of injury. Falls accounted for the highest single mechanism of injury (19.0%) with the majority (73.2%) of injuries involving either upper or lower limbs. ADHD is a co-morbidity that increases risk of injury among adolescents with intellectual disability. A critical component of injury prevention is avoidance of the great variety of environmental risk factors for injury relevant to this population. Copyright © 2018 Elsevier Ltd. All rights reserved.

  17. A Systematic Review of Suicidality in People with Intellectual Disabilities.

    Science.gov (United States)

    Dodd, Philip; Doherty, Ailbhe; Guerin, Suzanne

    2016-01-01

    Suicidality in people with intellectual disability has not been extensively researched. To identify the nature of the research that has actually been conducted on this topic. A search of research databases was conducted according to predefined criteria. Key information was extracted and rated for methodological merit. Twenty-four studies met the inclusion criteria for this systematic review. The aspects of suicidality investigated, which varied among studies, included suicidal attempts, behavior, ideation, and completed suicide. Thirteen studies highlighted risk factors for suicidality in this population. The most frequently noted risk factors were a concurrent mental health difficulty and the level of intellectual disability. Eight studies referred to people with intellectual disabilities' understanding of the concept of death or suicide. Various methodological issues were identified in the studies included. In what we believe to be first systematic review of suicidality in people with intellectual disabilities, it was apparent that well-designed, standardized research studies on the topic are scarce. There is consequently limited evidence to guide prevention and intervention strategies for suicidality in this population.

  18. Nurses' experience of caring for people with intellectual disability and dementia.

    Science.gov (United States)

    Cleary, Josephine; Doody, Owen

    2017-03-01

    To explore nurses' experiences of caring for older people with intellectual disability and dementia. Ageing and dementia prevalence is increasing along with the life expectancy of people with intellectual disability. As a population group, people with intellectual disability have a high prevalence of dementia, which is higher within the subpopulation of Down syndrome. People with intellectual disability live in residential care, community or residential settings, and nurses are required to adapt their practices to meet the changed needs of the individual. A qualitative Husserlian descriptive phenomenological methodology facilitated the researcher to become absorbed in the quintessence of meaning and explore nurses' experience of working with older people with intellectual disability and dementia. Ethical approval was obtained, and data were collected utilising semistructured interviews (n = 11). Interviews were transcribed and analysed using Colaizzi's framework for data analysis. Three key themes were identified: 'knowledge of dementia', 'person-centred care' and 'transitioning within the service'. The study highlights the need for proactive planning, life story books of the patient, and funding to support client and staff. Overall, the study highlights the importance of knowing the person, supporting the individual and recognising presenting behaviours as outside the control of the individual. This article presents the experiences of nurses caring for the older person with intellectual disability and dementia. Transitions are often very difficult for both the person and their peers, and they experience benefit from the efforts of a multidisciplinary team facilitating a person-centred approach. © 2016 John Wiley & Sons Ltd.

  19. Psychopathology of adolescents with an intellectual disability who present to general hospital services.

    Science.gov (United States)

    Theodoratos, Oreste; McPherson, Lyn; Franklin, Catherine; Tonge, Bruce; Einfeld, Stewart; Lennox, Nicholas; Ware, Robert S

    2017-10-01

    Adolescents with intellectual disability have increased rates of psychopathology compared with their typically developing peers and present to hospital more frequently for ambulant conditions. The aim of this study is to describe the psychopathology and related characteristics of a sample of adolescents with intellectual disability who presented to general hospital services. We investigated a cohort of adolescents with intellectual disability in South East Queensland, Australia between January 2006 and June 2010. Demographic and clinical data were obtained via mailed questionnaires and from general practice notes. Psychopathology was measured with the Short Form of the Developmental Behaviour Checklist. Of 98 individuals presenting to hospital, 71 (72.5%) had significant levels of psychopathology. Unknown aetiology for the intellectual disability was associated with presence of problem behaviours. Adolescents with more severe intellectual disability were more likely to have major problem behaviours. Co-morbid physical health issues were not associated with psychopathology. Only 12 (12.1%) adolescents had undergone specialized mental health intervention. The general hospital environment may offer opportunities for liaison psychiatry services to screen and provide management expertise for adolescent individuals with intellectual disability presenting for physical health issues.

  20. Inclusion in political and public life: the experiences of people with intellectual disability on government disability advisory bodies in Australia.

    Science.gov (United States)

    Frawley, Patsie; Bigby, Christine

    2011-03-01

    Civil and political participation lies at the core of citizenship. Increasingly, people with intellectual disability are members of disability advisory bodies. This study investigated the political orientations of advisory body members with intellectual disability, their participatory experiences, and the types of support they received. The 9 people with intellectual disability who in 2005 were members of disability advisory bodies at a state, national, and Victorian local government level were interviewed, together with 12 other members or secretariat staff of these bodies. Observations were also conducted of advisory body meetings. The political perspective of members with intellectual disability varied, but all had a background in self-advocacy. They found the work hard but rewarding and encountered both practical and intangible obstacles to participation. Members received varying types of practical support, but a supportive collegial milieu was characteristic among members who felt most confident about their participation. The milieu, structures, and processes of advisory bodies must all be adjusted to accommodate people with intellectual disability if they are to participate meaningfully.

  1. Intellectual developmental disorders: towards a new name, definition and framework for "mental retardation/intellectual disability" in ICD-11.

    Science.gov (United States)

    Salvador-Carulla, Luis; Reed, Geoffrey M; Vaez-Azizi, Leila M; Cooper, Sally-Ann; Martinez-Leal, Rafael; Bertelli, Marco; Adnams, Colleen; Cooray, Sherva; Deb, Shoumitro; Akoury-Dirani, Leyla; Girimaji, Satish Chandra; Katz, Gregorio; Kwok, Henry; Luckasson, Ruth; Simeonsson, Rune; Walsh, Carolyn; Munir, Kemir; Saxena, Shekhar

    2011-10-01

    Although "intellectual disability" has widely replaced the term "mental retardation", the debate as to whether this entity should be conceptualized as a health condition or as a disability has intensified as the revision of the World Health Organization (WHO)'s International Classification of Diseases (ICD) advances. Defining intellectual disability as a health condition is central to retaining it in ICD, with significant implications for health policy and access to health services. This paper presents the consensus reached to date by the WHO ICD Working Group on the Classification of Intellectual Disabilities. Literature reviews were conducted and a mixed qualitative approach was followed in a series of meetings to produce consensus-based recommendations combining prior expert knowledge and available evidence. The Working Group proposes replacing mental retardation with intellectual developmental disorders, defined as "a group of developmental conditions characterized by significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills". The Working Group further advises that intellectual developmental disorders be incorporated in the larger grouping (parent category) of neurodevelopmental disorders, that current subcategories based on clinical severity (i.e., mild, moderate, severe, profound) be continued, and that problem behaviours be removed from the core classification structure of intellectual developmental disorders and instead described as associated features.

  2. Does visual impairment lead to additional disability in adults with intellectual disabilities?

    NARCIS (Netherlands)

    Sjoukes, L.; Koot, H. M.; Kooijman, A. C.; Evenhuis, H.

    This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with observant-based

  3. Does visual impairment lead to additional disability in adults with intellectual disabilities?

    NARCIS (Netherlands)

    Evenhuis, H.M.; Sjoukes, L.; Koot, H.M.; Kooijman, A.C.

    2009-01-01

    Background: This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). Method: In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with

  4. Mortality in People with Intellectual Disabilities

    Science.gov (United States)

    Heslop, Pauline; Lauer, Emily; Hoghton, Matt

    2015-01-01

    This paper reviews why an understanding of mortality data in general, and in relation to people with intellectual disabilities in particular, is an important area of concern, and introduces the papers in this Special Edition.

  5. Analysis of Intellectual Disability Copy Number Variants for Association With Schizophrenia.

    Science.gov (United States)

    Rees, Elliott; Kendall, Kimberley; Pardiñas, Antonio F; Legge, Sophie E; Pocklington, Andrew; Escott-Price, Valentina; MacCabe, James H; Collier, David A; Holmans, Peter; O'Donovan, Michael C; Owen, Michael J; Walters, James T R; Kirov, George

    2016-09-01

    At least 11 rare copy number variants (CNVs) have been shown to be major risk factors for schizophrenia (SZ). These CNVs also increase the risk for other neurodevelopmental disorders, such as intellectual disability. It is possible that additional intellectual disability-associated CNVs increase the risk for SZ but have not yet been implicated in SZ because of previous studies being underpowered. To examine whether additional CNVs implicated in intellectual disability represent novel SZ risk loci. We used single-nucleotide polymorphism (SNP) array data to evaluate a set of 51 CNVs implicated in intellectual disability (excluding the known SZ loci) in a large data set of patients with SZ and healthy persons serving as controls recruited in a variety of settings. We analyzed a new sample of 6934 individuals with SZ and 8751 controls and combined those data with previously published large data sets for a total of 20 403 cases of SZ and 26 628 controls. Burden analysis of CNVs implicated in intellectual disability (excluding known SZ CNVs) for association with SZ. Association of individual intellectual disability CNV loci with SZ. Of data on the 20 403 cases (6151 [30.15%] female) and 26 628 controls (14 252 [53.52%] female), 51 intellectual disability CNVs were analyzed. Collectively, intellectual disability CNVs were significantly enriched for SZ (P = 1.0 × 10-6; odds ratio [OR], 1.9 [95% CI, 1.46-2.49]). Of the 51 CNVs tested, 19 (37%) were more common in SZ cases; only 4 (8%) were more common in controls (no observations were made for the remaining 28 [55%] loci). One novel locus, deletion at 16p12.1, was significantly associated with SZ after correction for multiple testing (rate in SZ, 33 [0.16%]; rate in controls, 12 [0.05%]; corrected P = .017; OR, 3.3; 95% CI, 1.61-7.05), and 2 loci reached nominal levels of significance (deletions at 2q11.2: 6 [0.03%] vs 1 [0.004%]; OR, 9.3; 95% CI, 1.03-447.76; corrected P > .99; and duplications

  6. Understanding Sources of Knowledge for Coaches of Athletes with Intellectual Disabilities

    Science.gov (United States)

    MacDonald, Dany J.; Beck, Katie; Erickson, Karl; Côté, Jean

    2016-01-01

    Background: Recent research has investigated development of coaching knowledge; however, less research has investigated the development of coaches who coach athletes with intellectual disabilities. The purpose of this study was to understand how coaches of athletes with intellectual disabilities gain their knowledge. Method: Forty-five Special…

  7. Intellectual disability and homelessness.

    Science.gov (United States)

    Mercier, C; Picard, S

    2011-04-01

    The association between poverty and intellectual disability (ID) has been well documented. However, little is known about persons with ID who face circumstances of extreme poverty, such as homelessness. This paper describes the situation of persons with ID who were or are homeless in Montreal and are currently receiving services from a team dedicated to homeless persons. (1) To describe the characteristics, history and current situation of these persons; and (2) to report within-group differences as a function of gender and current residential status. The data were collected from files using an anonymous chart summary. Descriptive statistics on the whole sample (n = 68) and inferential statistics on cross-tabulations by gender and residential status were performed. Persons with ID exhibited several related problems. Some of these persons, primarily women, experienced relatively short periods of homelessness and their situations stabilised once they were identified and followed up. Other persons with ID experienced chronic homelessness that appeared to parallel the number and severity of their other problems. When compared with a previous epidemiological study of the homeless in Montreal, the population of homeless persons with ID differed from the overall homeless population in a number of respects. The results suggest prevention and intervention targets. The need for epidemiological research appears particularly clear in light of the fact that below-average intellectual functioning has been identified as a risk factor for homelessness and a predisposing factor for vulnerability among street people. © 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

  8. Prevalence of Overweight and Obesity in Children with Intellectual Disabilities in Korea

    Science.gov (United States)

    Choi, Eunsook; Park, HyunJu; Ha, Yeongmi; Hwang, Won Ju

    2012-01-01

    Background: Overweight and obesity in children with intellectual disabilities may be a major health threat. The purpose of this study was to examine the prevalence of overweight and obesity in Korean children with intellectual disabilities aged 7-18 years who did not have specific genetic syndromes or physical disabilities. Materials and methods:…

  9. Math Practice and Its Influence on Math Skills and Executive Functions in Adolescents with Mild to Borderline Intellectual Disability

    Science.gov (United States)

    Jansen, Brenda R. J.; De Lange, Eva; Van der Molen, Mariet J.

    2013-01-01

    Adolescents with mild to borderline intellectual disability (MBID) often complete schooling without mastering basic math skills, even though basic math is essential for math-related challenges in everyday life. Limited attention to cognitive skills and low executive functioning (EF) may cause this delay. We aimed to improve math skills in an…

  10. A review of suicidality in persons with intellectual disability.

    Science.gov (United States)

    Merrick, Joav; Merrick, Efrat; Lunsky, Yona; Kandel, Isack

    2006-01-01

    It has been assumed that impaired intellectual capacity could act as a buffer to suicidality in the population of persons with intellectual disability (ID), developmental disability or mental retardation. The few studies conducted contest this assumption and in fact findings show that the characteristics of suicidality in that population were very similar to that in persons without intellectual disability. This paper reviews the studies conducted and describes the symptomatology in this population, risk factors, screening and intervention. Professionals working with this population should therefore be aware of and assess for this behavior, since in one study it was found that many caregivers were unaware of suicidality in their clients. Only two studies had systematically examined differences between suicidal and non-suicidal individuals with ID with regard to risk factors. Risk factors found were history of prior psychiatric hospitalization, comorbid physical disabilities, loneliness, sadness, depression or anxiety. There is limited research on intervention for suicidal behavior in the ID population, but professionals should consider risk factors for suicide in this population and intervene when suicidal risk/behavior is found.

  11. Patterns of sport participation for youth with autism spectrum disorder and intellectual disability.

    Science.gov (United States)

    Ryan, Stephanie; Fraser-Thomas, Jessica; Weiss, Jonathan A

    2018-05-01

    Little is known about sport participation in youth with Autism Spectrum Disorder (ASD). The current study examined sport characteristics (frequency, diversity, positive social experiences [PSE]) for youth with ASD and intellectual disability compared to youth with intellectual disability alone and explored the personal and contextual correlates of involvement. Parents (N = 409) completed an online survey, and multiple mediation analyses were used to examine the factors that explained the relationships between sport involvement in youth with ASD and intellectual disability. No significant main effects of ASD status were found for frequency or diversity, but youth with intellectual disability alone had higher scores for PSE compared to youth with ASD and intellectual disability. Sociocommunicative abilities, coach relationship and resources mediated the relationship between ASD status and PSE. A better understanding of the factors related to sport is essential for allowing families, service providers and policy makers to improve involvement for youth with ASD. © 2017 John Wiley & Sons Ltd.

  12. A study of behaviour problems and psychiatric disorders among people with intellectual disability

    OpenAIRE

    Myrbakk, Even

    2008-01-01

    The present thesis investigates behaviour problems and their relationship to psychiatric disorders in people with intellectual disability living in the northern part of Norway, as well as the concordances between four of the most commonly used assessment instruments for psychiatric disorders in people with intellectual disability. A total of one hundred and eighty-one individuals with intellectual disability living in the counties of Nordland, Troms and Finnmark participated in the studies. ...

  13. Supporting primary healthcare professionals to care for people with intellectual disability: a research agenda.

    Science.gov (United States)

    Lennox, Nicholas; Van Driel, Mieke L; van Dooren, Kate

    2015-01-01

    The vast health inequities experienced by people with intellectual disability remain indisputable. Persistent and contemporary challenges exist for primary healthcare providers and researchers working to contribute to improvements to the health and well-being of people with intellectual disability. Over two decades after the only review of supports for primary healthcare providers was published, this paper contributes to an evolving research agenda that aims to make meaningful gains in health-related outcomes for this group. The present authors updated the existing review by searching the international literature for developments and evaluations of multinational models of care. Based on our review, we present three strategies to support primary healthcare providers: (i) effectively using what we know, (ii) considering other strategies that offer support to primary healthcare professionals and (iii) researching primary health care at the system level. Strengthening primary care by supporting equitable provision of health-related care for people with intellectual disability is a much needed step towards improving health outcomes among people with intellectual disability. More descriptive quantitative and qualitative research, as well as intervention-based research underpinned by rigorous mixed-methods evaluating these strategies at the primary care level, which is sensitive to the needs of people with intellectual disability will assist primary care providers to provide better care and achieve better health outcomes. Many people with intellectual disability have poor health. The authors reviewed what has been written by other researchers about how to improve the health of people with intellectual disability. In the future, people who support adults with intellectual disability should continue doing what they do well, think of other ways to improve health, and do more research about health. At all times, the needs of people with intellectual disability should be the

  14. Barriers to Increasing the Physical Activity of People with Intellectual Disabilities

    Science.gov (United States)

    Cartwright, Luke; Reid, Marie; Hammersley, Richard; Walley, Robert M.

    2017-01-01

    Background: The prevalence of obesity, inactivity and related morbidity and mortality is higher amongst people with intellectual disabilities than in the population in general, an issue of global concern. This research examined the perspectives of people with intellectual disabilities and their carers, on exercise and activity. Materials and…

  15. Parental Explanatory Models of Child's Intellectual Disability: A Q Methodology Study

    Science.gov (United States)

    John, Aesha; Montgomery, Diane

    2016-01-01

    This study with families caring for an individual with an intellectual disability in a mid-sized Indian city explored the diverse explanatory models that parents constructed of causes, preferred treatment approaches and perceived social effects of their child's intellectual disability. Seventeen mothers and three fathers rank ordered 48 disability…

  16. Groups for Parents with Intellectual Disabilities: A Qualitative Analysis of Experiences

    Science.gov (United States)

    Gustavsson, Marie; Starke, Mikaela

    2017-01-01

    Background: Parents with intellectual disabilities (IDs) are often socially isolated and need support. Materials and Methods: This qualitative study is based on participant observations of a group for parents with with intellectual disabilities. Data were categorized and interpreted in the framework of social capital and symbolic interactionism.…

  17. READING-WRITING AND LITERACY IN CHILDREN WITH INTELLECTUAL DISABILITIES

    Directory of Open Access Journals (Sweden)

    Marilene Bortolotti Boraschi

    2013-07-01

    Full Text Available This article focuses on the role and learning of reading and wrinting to human development as a social practice, considering the necessary condition to reading and writing as an exercise in citizenship. Aims to reflect on the occurrence of reading-writing processes and literacy in children with intellectual disabilities. The study was conducted by means of literature, and are based on a qualitative research. The reflections made throughout the investigation brought some considerations on intellectual disability, charactering it. Allowed some notes on the processes of reading-writing and literacy. As the survey results, some thoughts were about the possible occurrence of the processes of reading-writing and literacy in intellectually disabled children, discussing how these processes can take place through pedagogical practices in classrooms common regular education, contributing to the appropriation of the world literate and active participation by such child in society.

  18. Obesity in British children with and without intellectual disability: cohort study.

    Science.gov (United States)

    Emerson, Eric; Robertson, Janet; Baines, Susannah; Hatton, Chris

    2016-07-27

    Reducing the prevalence of and inequities in the distribution of child obesity will require developing interventions that are sensitive to the situation of 'high risk' groups of children. Children with intellectual disability appear to be one such group. We aimed to estimate the prevalence of obesity in children with and without intellectual disability in a longitudinal representative sample of British children and identify risk factors associated with obesity at age 11. Information was collected on a nationally representative sample of over 18,000 at ages 9 months, 3, 5, 7 and 11 years. We used UK 1990 gender-specific growth reference charts and the LMS Growth programme to identify age and gender-specific overweight and obesity BMI thresholds for each child at ages 5, 7 and 11 years. Children with intellectual disabilities were significantly more likely than other children to be obese at ages five (OR = 1.32[1.03-1.68]), seven (OR = 1.39[1.05-1.83]) and eleven (OR = 1.68[1.39-2.03]). At ages five and seven increased risk of obesity among children with intellectual disabilities was only apparent among boys. Among children with intellectual disability risk of obesity at age eleven was associated with persistent maternal obesity, maternal education, child ethnicity and being bullied at age five. Children with intellectual disability are a high-risk group for the development of obesity, accounting for 5-6 % of all obese children. Interventions to reduce the prevalence and inequities in the distribution of child obesity will need to take account of the specific situation of this group of children.

  19. Lived experiences of student nurses caring for intellectually disabled people in a public psychiatric institution

    Directory of Open Access Journals (Sweden)

    Annie Temane

    2016-06-01

    Full Text Available Background: Caring for intellectually disabled people can be demanding for student nurses who are novices in the nursing profession. To ensure that quality nursing care is provided, student nurses should have an understanding of and a positive attitude towards intellectually disabled people. Nursing intellectually disabled people can be a challenge for the student nurses. Therefore, student nurses need to be able to deal with challenges of caring for intellectually disabled people. Objective: This article aims to explore and describe experiences of student nurses caring for intellectually disabled people in a public psychiatric institution. Design and method: A qualitative, exploratory, descriptive and contextual research design was used. Data were collected through individual in-depth phenomenological interviews, naïve sketches and field notes. Thematic analysis was utilised to analyse the collected data. Results were contextualised within the literature and measures to ensure trustworthiness were adhered to. Ethical principals were also applied throughout the research process. Results: Five themes emerged from the data. Student nurses experienced a profoundly unsettling impact on their whole being when caring for intellectually disabled people; they developed a sense of compassion and a new way of looking at life, and experienced a need for certain physical, mental and spiritual needs to be met. Conclusion: From the results, it is evident that student nurses were challenged in caring for intellectually disabled people. However, they developed a sense of awareness that intellectually disabled people have a need to be cared for like any other person. Keywords: experiences, student nurses, caring, intellectually disabled people, public psychiatric institution

  20. An Interstitial Deletion at 7q33-36.1 in a Patient with Intellectual Disability, Significant Language Delay, and Severe Microcephaly

    Directory of Open Access Journals (Sweden)

    Trupti Kale

    2016-01-01

    Full Text Available Interstitial deletions of the distal 7q region are considered a rare entity. In this report, we describe a seven-year-old male with a heterozygous interstitial deletion at 7q33-36.1 with characteristic dysmorphic facial features, intellectual disability, severe microcephaly, and significant language delay. The primary focus of our report is to compare our case with the few others in the literature describing interstitial deletions at the long arm of chromosome 7. Based on the various breakpoints in prior studies, a number of phenotypic variations have been identified that are unique to each of the reports. However, there are also a number of similarities among these cases as well. We hope to provide a concise review of the literature and genes involved within our deletion sequence in the hope that it will contribute to creating a phenotypic profile for this patient population.

  1. Transition and Students with Mild Intellectual Disability: Findings From the National Longitudinal Transition Study-2

    Science.gov (United States)

    Bouck, Emily C.; Joshi, Gauri S.

    2016-01-01

    Students with intellectual disability historically struggle with post-school outcomes. However, much of the research on students with intellectual disability relative to post-school outcomes and transition services is aggregated for students with mild, moderate, and severe intellectual disability. This secondary analysis of the National…

  2. Obesity in adolescents with intellectual disability: Prevalence and associated characteristics.

    Science.gov (United States)

    Krause, Sharon; Ware, Robert; McPherson, Lyn; Lennox, Nicholas; O'Callaghan, Michael

    Studies from a number of countries have indicated an increased risk of obesity in adolescents with intellectual disability. Whether risk factors for adults with intellectual disability apply to adolescents however is uncertain. This study examines obesity in a community sample of adolescents with intellectual disability in Australia, and investigates risk factors associated with obesity and overweight. A cross-sectional survey and medical record review on 261 adolescents with intellectual disability attending special education facilities in South-East Queensland, Australia between January 2006 and September 2010 was conducted. Information on age, gender, weight, height, syndrome specific diagnoses, problematic behaviours, mobility, taking psychotropic or epileptic medication, and perceived household financial difficulties was collected. Body mass index (BMI) was calculated and participants categorised as normal/underweight, overweight or obese according to the International Obesity Taskforce definitions. Overall 22.5% (95% CI: 17.8-28.0%) of adolescents were obese, and 23.8% (95% CI: 19.0-29.4%) were overweight, a marked increase compared to Australian norms. Adolescents with Down syndrome were more likely to be obese than other participants (odds ratio=3.21; 95% CI: 1.41-7.30). No association was found with other risk factors examined. Prevalence of obesity and overweight were increased compared to general Australian adolescents. The only significant risk factor was the presence of Down syndrome. These findings reinforce the need for a health policy and practice response to obesity that is inclusive of individuals with intellectual disability. Copyright © 2015 Asia Oceania Association for the Study of Obesity. Published by Elsevier Ltd. All rights reserved.

  3. [Occupational burdens in special educators working with intellectually disabled students].

    Science.gov (United States)

    Plichta, Piotr

    2014-01-01

    The article presents the results of psychosocial burdens in special educators (specialists in the field of oligophrenopedagogy) with intellectually disabled students. In theoretical part, specific context of occupational stress in special educators was introduced. Additionally, the need of broader research context regarding occupational stress and the risk of burnout in special educators working with intellectually disabled individuals were included. The results were obtained using Plichta and Pyzalski's Questionnaire of Occupational Burdens in Teaching (QOBT). The presented results are based on a research sample (N = 100) of special educators (female) teaching intellectually disabled students attending special schools in the city of Lódz. The obtained results were compared with the results coming from a large random sample of public school teachers working with non-intellectually disabled children from the Lodi voivodeship (N = 429) and referred to the norms of QOBT. The results show significant percentage of respondents obtaining high level of occupational burdens (conflict situations - 45%, organizational burdens - 31%, lack of work sense - 40%, global score - 40%). Seniority is not related to the level of burdens. Some significant differences concerning the level of occupational burdens between both groups of teachers were found. The study showed e.g. the strong need for supporting special educators in the workplace context and the need of implementing preventive and remedial measures at both individual and organizational levels (especially in terms of improving personal relationships in a workplace). Generally, the results show similarity of the stressors' ranking in special educators and school teachers working with non-intellectually disabled children.

  4. Occupational burdens in special educators working with intellectually disabled students

    OpenAIRE

    Piotr Plichta

    2014-01-01

    Background: The article presents the results of psychosocial burdens in special educators (specialists in the field of oligophrenopedagogy) with intellectually disabled students. In theoretical part, specific context of occupational stress in special educators was introduced. Additionally, the need of broader research context regarding occupational stress and the risk of burnout in special educators working with intellectually disabled individuals were included. Material and Methods: The resu...

  5. Cyberbullying among students with intellectual and developmental disability in special education settings.

    NARCIS (Netherlands)

    Didden, R.; Scholte, R.H.J.; Korzilius, H.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.; Lancioni, G.E.

    2009-01-01

    OBJECTIVE: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. METHODS: Students (n = 114) with intellectual and developmental disability who were between 12-19 years of age

  6. Cyberbullying among students with intellectual and developmental disability in special education settings

    NARCIS (Netherlands)

    Didden, R.; Scholte, R.H.J.; Korzilius, H.P.L.M.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.; Lancioni, G.E.

    2009-01-01

    OBJECTIVE: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. METHODS: Students (n = 114) with intellectual and developmental disability who were between 12-19 years of age

  7. Perceived social acceptance, theory of mind and social adjustment in children with intellectual disabilities.

    Science.gov (United States)

    Fiasse, Catherine; Nader-Grosbois, Nathalie

    2012-01-01

    Perceived social acceptance, theory of mind (ToM) and social adjustment were investigated in 45 children with intellectual disabilities (ID) compared with 45 typically developing (TD) preschoolers, matched for developmental age assessed by means of the Differential Scales of Intellectual Efficiency-Revised edition (EDEI-R, Perron-Borelli, 1996). Children's understanding of beliefs and emotions was assessed by means of ToM belief tasks (Nader-Grosbois & Thirion-Marissiaux, 2011) and ToM emotion tasks (Nader-Grosbois & Thirion-Marissiaux, 2011). Seven items from the Pictorial Scale of Perceived Competence and Social Acceptance for children (PSPCSA, Harter & Pike, 1980) assessed children's perceived social acceptance. Their teachers completed the Social Adjustment for Children Scale (EASE, Hughes, Soares-Boucaud, Hochmann, & Frith, 1997). For both groups together, the results showed that perceived social acceptance mediates the relation between ToM skills and social adjustment. The presence or absence of intellectual disabilities does not moderate the relations either between ToM skills and perceived social acceptance, or between perceived social acceptance and social adjustment. The study did not confirm the difference hypothesis of structural and relational patterns between these three processes in children with ID, but instead supported the hypothesis of a similar structure that develops in a delayed manner. Copyright © 2012 Elsevier Ltd. All rights reserved.

  8. Experiences of parents of children with intellectual disabilities in the Ashanti Region of Ghana

    Directory of Open Access Journals (Sweden)

    Eric Badu

    2016-07-01

    Full Text Available Parents of children with intellectual disabilities could experience difficulties associated with their care. Yet, insight into individual experiences is inadequate to guide effective responses to the needs of parents and their sons and daughters with intellectual disability. This study sought to explore the experiences of parents of children with intellectual disability with the aim of making these experiences visible to guide the design and provision of support services for the parents and their children. In-depth interviews were conducted with 20 parents of children with intellectual disability between the ages of 4 and 15 years residing in the Ashanti Region of Ghana. Data were analyzed using qualitative content analysis to explore themes that describe the experiences of the parents. The study found that parents of intellectually disabled children encounter challenges looking after their children due to the negative perceptions associated with having such children. Financial costs and managing behavioral challenges of intellectually disabled children were also major sources of stressors for parents. Although informal support and assurances from professionals alleviated parental stress and gave them some hope about the future of their children, these support services seem inadequate. A more structured support programme that includes financial empowerment of the parents and recognizes the importance of early detection and intervention practices is needed.  Keywords: Intellectual disability, parents, caregivers, support services, health professionals

  9. Cyberbullying among students with intellectual and developmental disability in special education settings

    NARCIS (Netherlands)

    Didden, H.C.M.; Scholte, R.H.J.; Korzilius, H.P.L.M.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.B.; Lancioni, G.E.

    2009-01-01

    Objective: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. Methods: Students (n = 114) with intellectual and developmental disability who were between 12–19 years of age

  10. Communication problems in children with autism and intellectual disability : depicting the phenotype

    NARCIS (Netherlands)

    Maljaars, Janne Pieternella Wilhelmina

    2012-01-01

    Children with autism and intellectual disability form a particularly vulnerable group, as both disorders have a significant impact on the way and level of information processing and communication. However, children with autism and co-occurring intellectual disability are often excluded from

  11. Social Inclusion and People with Intellectual Disability and Challenging Behaviour: A Systematic Review

    Science.gov (United States)

    Bigby, Christine

    2012-01-01

    Background: Social inclusion is central to disability policies internationally. The high risk of social exclusion for people with intellectual disability is compounded for those with challenging behaviour. Method: A systematic literature review examined how social inclusion of people with intellectual disability and challenging behaviour has been…

  12. A novel mutation in PGAP2 gene causes developmental delay, intellectual disability, epilepsy and microcephaly in consanguineous Saudi family.

    Science.gov (United States)

    Naseer, Muhammad Imran; Rasool, Mahmood; Jan, Mohammed M; Chaudhary, Adeel G; Pushparaj, Peter Natesan; Abuzenadah, Adel M; Al-Qahtani, Mohammad H

    2016-12-15

    PGAP2 (Post-GPI Attachment to Proteins 2) gene is involved in lipid remodeling steps of Glycosylphosphatidylinositol (GPI)-anchor maturation. At the surface of the cell this gene is required for proper expression of GPI-anchored proteins. Hyperphosphatasia with mental retardation syndrome-3 is an autosomal recessive disorder usually characterized by severe mental retardation. Mutations in the PGAP2 gene cause hyperphosphatasia mental retardation syndrome-3. We have identified a large consanguineous family from Saudi origin segregating developmental delay, intellectual disability, epilepsy and microcephaly. Whole exome sequencing with 100× coverage was performed on two affected siblings of the family. Data analysis in the patient revealed a novel missense mutation c.191C>T in PGAP2 gene resulting in Alanine to Valine substitution (Ala64Val). The mutation was reconfirmed and validated by subsequent Sanger sequencing method. The mutation was ruled out in 100 unrelated healthy controls. We suggest that this pathogenic mutation disrupts the proper function of the gene proteins resulting in the disease state. Copyright © 2016 Elsevier B.V. All rights reserved.

  13. Family-Peer Linkages for Children with Intellectual Disability and Children with Learning Disabilities.

    Science.gov (United States)

    Floyd, Frank J; Olsen, Darren L

    2017-09-01

    Family interactions are potential contexts for children with intellectual and learning disabilities to develop skillful social behaviors needed to relate effectively with peers. This study examined problem solving interactions within families of elementary school-age children (7-11 years) with intellectual disability (n = 37), specific learning disabilities (n =48), and without disabilities (n = 22). After accounting for group differences in children's behaviors and peer acceptance, across all groups, mothers' behaviors that encouraged egalitarian problem solving predicted more engaged and skillful problem solving by the children. However, mothers' controlling, directive behaviors predicted fewer of these behaviors by the children. Fathers' behaviors had mixed associations with the children's actions, possibly because they were reactive to children's unengaged and negative behaviors. For the children, greater involvement, more facilitative behaviors, and less negativity with their families were associated with greater acceptance from their peers, supporting family-peer linkages for children at risk for peer rejection.

  14. A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?

    Science.gov (United States)

    McDonald, Katherine E; Conroy, Nicole E; Olick, Robert S

    2017-12-13

    Attitudes toward the research participation of adults with intellectual disability inform research policy and practice, impact interest in and support for research participation, and promote or discourage the generation of new knowledge to promote health among adults with intellectual disability. Yet we know little about these beliefs among the public and the scientific community. We quantitatively studied attitudes among adults with intellectual disability, family and friends, disability service providers, researchers, and Institutional Review Board (IRB) members. We predicted that adults with intellectual disability, and researchers would espouse views most consistent with disability rights, whereas IRB members, and to a lesser degree family, friends, and service providers, would espouse more protective views. We surveyed five hundred and twelve members of the five participant stakeholder groups on their attitudes toward the research participation of adults with intellectual disability. We found broad support for research about people with intellectual disability, though slightly more tempered support for their direct participation therein. In general, IRB members and to some extent adults with intellectual disability endorsed direct participation less than others. We also found that adults with intellectual disability strongly believed in their consent capacity. Resources should be directed toward health-related research with adults with intellectual disability, and interventions should be pursued to address ethical challenges and promote beliefs consistent with human rights. Copyright © 2017 Elsevier Inc. All rights reserved.

  15. Setting Global Research Priorities for Developmental Disabilities, Including Intellectual Disabilities and Autism

    Science.gov (United States)

    Tomlinson, M.; Yasamy, M. T.; Emerson, E.; Officer, A.; Richler, D.; Saxena, S.

    2014-01-01

    Objectives: The prevalence of intellectual disabilities (ID) has been estimated at 10.4/1000 worldwide with higher rates among children and adolescents in lower income countries. The objective of this paper is to address research priorities for development disabilities, notably ID and autism, at the global level and to propose the more rational…

  16. Leveraging Social Capital of Individuals with Intellectual Disabilities through Participation on Facebook.

    Science.gov (United States)

    Shpigelman, Carmit-Noa

    2018-01-01

    Participation in social networking sites has considerable potential to leverage the individual's social capital, including persons with intellectual disabilities, whose real-world social networks are fairly limited. This study aimed to understand how individuals with intellectual disabilities use Facebook to access social capital benefits, if at all. Qualitative interviews and observations were conducted with 20 adult Facebook users with intellectual disabilities. The online participation enhanced their bonding social capital as well as contributed to their psychological well-being through increasing their online visibility, popularity and sense of belonging. At the same time, they experienced stress and frustration due to usage difficulties, which prevented them from enhancing their bridging social capital. Participation in social networking sites may also leverage bridging social capital of persons with intellectual disabilities, but they need a more accessible platform and ongoing support to ensure safe and fruitful participation. © 2016 John Wiley & Sons Ltd.

  17. Intellectual disability, mental illness and offending behaviour: forensic cases from early twentieth-century Ireland.

    Science.gov (United States)

    Kelly, B D

    2010-09-01

    The history of institutional care for individuals with intellectual disability is under-researched, complex and troubling. To explore the experiences of women who may have had intellectual disability and/or mental illness and were admitted to forensic psychiatric care in early twentieth-century Ireland. All female case records at the Central Mental Hospital, Dublin from 1910 to 1948 (n = 42) were studied for evidence of possible intellectual disability and a series of five cases is presented in detail. These committals occurred in the context of adverse social conditions, over-crowding in asylums and a belief that rates of mental illness were rising. Particular challenges included diagnostic issues (especially in relation to intellectual disability), adjustment to asylum environments, mental illness and physical ill-health. The institutional experiences of individuals with intellectual disability represents an important area for further historical research, using larger and more varied forensic populations.

  18. Intellectual disability sport and Paralympic classification

    OpenAIRE

    Anna van Dijk; Klára Daďová; Irena Martínková

    2017-01-01

    Sometimes it might seem that elite disability sport, especially as represented by the Paralympic Movement, is only for athletes with an amputation, or a spinal cord injury, or cerebral palsied or blind athletes, rather than for athletes with an intellectual disability (ID). However, after we set out the various opportunities open to ID athletes, that offer different kinds of sporting engagement, we find interesting and alarming issues with respect to the elite competitive event offer for athl...

  19. Best Practices in Intellectual Disability Identification

    Science.gov (United States)

    Fiorello, Catherine A.; Jenkins, Tiffany K.

    2018-01-01

    This article is an overview of identification of intellectual disabilities (ID), with a focus on meeting legal and ethical requirements when assessing children from culturally and linguistically diverse backgrounds and those living in poverty. Specific procedures and recommended instruments will be reviewed.

  20. An inexorable rise in intellectual disability?

    NARCIS (Netherlands)

    Michiel Ras; Isolde Woittiez; Hetty van Kempen; Klarita Sadiraj

    2010-01-01

    Original title: Steeds meer verstandelijk gehandicapten? Demand for intellectual disability care has grown strongly in the Netherlands in recent years. Partly at the request of the Dutch Ministry of Health, Welfare and Sport, the Netherlands Institute for Social Research/SCP measured the

  1. Modeling contextual influences on parents with intellectual disability and their children.

    Science.gov (United States)

    Wade, Catherine; Llewellyn, Gwynnyth; Matthews, Jan

    2011-11-01

    Many parents with intellectual disability experience living conditions associated with risk for children and parents. This study used structural equation modeling to test a theoretical model of the relationships among parent, child, family, and contextual variables in 120 Australian families where a parent had an intellectual disability. Findings revealed that parenting practices had a direct effect on children's well being, that social support was associated with children's well being through the mediator of parenting practices, and that access to social support had a direct influence on parenting practices. Implications of the findings for research, intervention, and policy are explored, with the goal of promoting optimal well being for children who are raised by parents with intellectual disability.

  2. BELIEFS OF TEACHERS ABOUT BEHAVIOR PROBLEMS IN STUDENTS WITH INTELLECTUAL DISABILITIES

    Directory of Open Access Journals (Sweden)

    A. L. Gavia P.

    2013-09-01

    Full Text Available Hermeneutic research study conducted with seventeen primary regular and special education teachers to examine their beliefs about intellectual disabilities and behavior problems. Teachers beliefs about the influence that the context has the proliferation of conduct and disability issues is unveiled. It is an approach to the theoretical reference from beliefs, teachers in regular and special education, they have in common that their beliefs about intellectual disabilities are circumscribed or based on his work experience, rather than in references up-to-date intellectual disability. On the other hand found that teachers, based their beliefs on behavioural problems in the characteristics that have been observed through the experience with his students. Finally the strategies and style for setting the order were also based on their beliefs, elementary and special education teachers were using corrective strategies, although the latter also used cognitive strategies.

  3. The practical implication of comparing how adults with and without intellectual disability respond to music

    DEFF Research Database (Denmark)

    Hooper, Jeff; Wigram, Tony; Carson, Derek

    2011-01-01

    Previous researchers who compared how people with, and without, an intellectual disability respond to music focused on musical aptitude, but not on arousal. This paper presents the background, methodology, and results of a study that selected fifteen different pieces of music, and compared...... the arousal response of adults with (n = 48), and without (n = 48), an intellectual disability. There was a very strong significant positive correlation (rho = 0.831, N = 15, P ... an intellectual disability, can be used appropriately in an intervention predicated for lowering the arousal levels of the intellectually disabled population....

  4. Characteristics, etiology and assessment of sexual offending in persons with intellectual disability

    Directory of Open Access Journals (Sweden)

    Tomić Katarina

    2017-01-01

    Full Text Available The paper presents an overview of the studies dealing with the etiology, types and clinical expression of sexual offending in people with intellectual disability, with a brief overview of some of the methods and techniques of structured assessment of deviant sexual behavior. A review of possible etiological factors provides an overview of the static and dynamic risks factors of sexual offending and recidivism. The results indicate an increased incidence of sexual offending in people with intellectual disability compared to those of a typical development. The most important risk factors for the manifestation of deviant sexual behavior include: early victimization, misunderstanding of social rules and restrictions, poor impulse inhibition, behavioral and emotional dysregulation and some neurobiological factors associated with genetic syndromes. People with intellectual disabilities usually choose other people with disabilities, as well as children, for victims of sexual offences. The results of the presented research point to the importance of continuous sexual education of people with intellectual disability and preventive action in order to mitigate the well known risk factors for expressing sexually deviant behavior.

  5. Attributional and Emotional Determinants of Aggression in People with Mild Intellectual Disabilities.

    Science.gov (United States)

    Baker, Warren; Bramston, Paul

    1997-01-01

    People (n=103) with mild intellectual disabilities responded to several scales of anger, hostility, aggression, and personality. Results were consistent with earlier studies of relationships among anger, hostility, and aggression conducted with the general population. Findings suggest that people with intellectual disabilities may benefit from…

  6. Processing of Facial Expressions of Emotions by Adults with Down Syndrome and Moderate Intellectual Disability

    Science.gov (United States)

    Carvajal, Fernando; Fernandez-Alcaraz, Camino; Rueda, Maria; Sarrion, Louise

    2012-01-01

    The processing of facial expressions of emotions by 23 adults with Down syndrome and moderate intellectual disability was compared with that of adults with intellectual disability of other etiologies (24 matched in cognitive level and 26 with mild intellectual disability). Each participant performed 4 tasks of the Florida Affect Battery and an…

  7. Occupational burdens in special educators working with intellectually disabled students

    Directory of Open Access Journals (Sweden)

    Piotr Plichta

    2014-04-01

    Full Text Available Background: The article presents the results of psychosocial burdens in special educators (specialists in the field of oligophrenopedagogy with intellectually disabled students. In theoretical part, specific context of occupational stress in special educators was introduced. Additionally, the need of broader research context regarding occupational stress and the risk of burnout in special educators working with intellectually disabled individuals were included. Material and Methods: The results were obtained using Plichta and Pyżalski's Questionnaire of Occupational Burdens in Teaching (QOBT. The presented results are based on a research sample (N = 100 of special educators (female teaching intellectually disabled students attending special schools in the city of Łódź. The obtained results were compared with the results coming from a large random sample of public school teachers working with non-intellectually disabled children from the Łodź voivodeship (N = 429 and referred to the norms of QOBT. Results: The results show significant percentage of respondents obtaining high level of occupational burdens (conflict situations - 45%, organizational burdens - 31%, lack of work sense - 40%, global score - 40%. Seniority is not related to the level of burdens. Some significant differences concerning the level of occupational burdens between both groups of teachers were found. Conclusions: The study showed e.g. the strong need for supporting special educators in the workplace context and the need of implementing preventive and remedial measures at both individual and organizational levels (especially in terms of improving personal relationships in a workplace. Generally, the results show similarity of the stressors' ranking in special educators and school teachers working with non-intellectually disabled children. Med Pr 2014;65(2:239–250

  8. Genetic Testing in Intellectual Disability Psychiatry: Opinions and Practices of UK Child and Intellectual Disability Psychiatrists

    Science.gov (United States)

    Wolfe, Kate; Stueber, Kerstin; McQuillin, Andrew; Jichi, Fatima; Patch, Christine; Flinter, Frances; Strydom, André; Bass, Nick

    2018-01-01

    Background: An increasing number of genetic causes of intellectual disabilities (ID) are identifiable by clinical genetic testing, offering the prospect of bespoke patient management. However, little is known about the practices of psychiatrists and their views on genetic testing. Method: We undertook an online survey of 215 psychiatrists, who…

  9. PHYSICAL AND SPORT ACTIVITIES OF INTELLECTUALLY DISABLED INDIVIDUALS

    Directory of Open Access Journals (Sweden)

    Zoran Stanišić

    2012-06-01

    Full Text Available The low level of physical fitness of intellectually disabled individuals is most often the result of a sedentary lifestyle and the lack of the possibility for these individuals to take part in various forms of physical activity, and as a consequence these individuals are often unable to take part in any form of planned physical activities, are unable to adequately perform everyday activities and have limited abilities for performing workrelated duties. Regular physical activity can have a preventive effect, can reduce health risks and prevent the onset of various illnesses, as well as to promote an active lifestyle and increase physical and work capacities among the members of this particular population. Sport can play an important role in the life of individuals with intellectual disability as it represents a good basis for the development of physical and cognitive abilities. Team sports, which include interaction among a large number of people, a decision-making processes in a variety of situations and the understanding of the game itself in its constituent parts can be used as an effective and practical treatment of individuals with intellectual disability.

  10. [Psychiatric disorders and neurological comorbidity in children with intellectual disability].

    Science.gov (United States)

    Wriedt, Elke; Wiberg, Anja; Sakar, Vehbi; Noterdaeme, Michele

    2010-05-01

    This article gives an overview of the consultant child and adolescent psychiatric services in the region of Upper Bavaria (Germany). The data of 257 children and adolescents with intellectual disability and psychiatric disorders were evaluated. About 14% of the children with ID in special schools or day care centers, and 40% of the children with ID in residential care showed a definite psychiatric disorder. The most frequently diagnosed disorders were adjustment disorders, hyperkinetic disorders and conduct disorders, as well as emotional problems and pervasive developmental disorders. Children with severe intellectual disability had more additional somatic disorders and were more impaired in their psychosocial functions. The results show the need for psychiatric services for children and adolescents with intellectual disability and psychiatric disorders. The development and implementation of integrative and interdisciplinary models is necessary to allow for adequate medical care for these patients.

  11. Cognitive-Behavioral Therapy for Depression in Individuals with Intellectual Disabilities: A Review

    Science.gov (United States)

    James, Jessica S.

    2017-01-01

    Depression is common in individuals with intellectual disabilities, but evidence regarding treatment for this population is lacking. Through a systematic literature review of cognitive-behavioral therapy (CBT) with individuals with intellectual disabilities, a total of six studies were identified that used pretest-post-test nonequivalent control…

  12. Training of Child and Adolescent Psychiatry Fellows in Autism and Intellectual Disability

    Science.gov (United States)

    Marrus, Natasha; Veenstra-VanderWeele, Jeremy; Hellings, Jessica A.; Stigler, Kimberly A.; Szymanski, Ludwik; King, Bryan H.; Carlisle, L. Lee; Cook, Edwin H., Jr.; Pruett, John R., Jr.

    2014-01-01

    Patients with autism spectrum disorders and intellectual disability can be clinically complex and often have limited access to psychiatric care. Because little is known about post-graduate clinical education in autism spectrum disorder and intellectual disability, we surveyed training directors of child and adolescent psychiatry fellowship…

  13. Eye movement desensitization and reprocessing in an adolescent with epilepsy and mild intellectual disability.

    Science.gov (United States)

    Rodenburg, Roos; Benjamin, Anja; Meijer, Anne Marie; Jongeneel, Ruud

    2009-09-01

    Intellectual disability is a comorbid condition in epilepsy. People with epilepsy and intellectual disability are at high risk of developing behavioral problems. Among the many contributors to behavioral problems in people with epilepsy and intellectual disability are those of traumatic experiences. As such, behavioral problems can be seen as a reflection of these traumatic experiences. Among established trauma therapies, eye movement desensitization and reprocessing (EMDR) is an emerging treatment that is effective in adults and also seems to be effective in children. This article is a case report of EMDR in an adolescent with epilepsy and mild intellectual disability, in whom the EMDR children's protocol was used. The aim was to assess whether clinical trauma status significantly diminished to nonclinical status posttreatment. Change in trauma symptoms was evaluated with the Reliable Change Index (RCI). Results showed a significant decrease in trauma symptoms toward nonclinical status from pretreatment to posttreatment. EMDR consequences for epilepsy and intellectual disability are discussed.

  14. Intellectual disability health content within medical curriculum: an audit of what our future doctors are taught.

    Science.gov (United States)

    Trollor, Julian N; Ruffell, Beth; Tracy, Jane; Torr, Jennifer J; Durvasula, Seeta; Iacono, Teresa; Eagleson, Claire; Lennox, Nicolas

    2016-04-11

    There is a high burden of unmet health needs for people with intellectual disability. Despite experiencing significantly higher rates of morbidity and mortality compared with the general population, this group faces greater barriers to accessing healthcare. While increasing workplace capacity is one way to reduce this inequitable access, previous research indicates a scarcity of undergraduate teaching in intellectual disability. The aim of the study was to determine the extent and nature of intellectual disability content currently offered within medical degree curricula. All Australian universities (n = 20) providing accredited medical training were invited to participate in a two-phase audit via an email invitation to the Dean of each medical school. The Dean's delegate from 14 medical schools completed Phase 1, which involved a questionnaire or telephone interview about the overall medical course structure. Unit coordinators and/or teaching staff from 12 medical schools completed Phase 2, which involved an online survey about intellectual disability content within the curriculum. In Australia, medical school curricula contain a median of 2.55 h of compulsory intellectual disability content. The majority of universities only offer a small amount of compulsory content. Of compulsory units, intellectual disability teaching is minimal in sexual health and emergency medicine (only one unit offered in one school for each). Topics of key relevance in intellectual disability health such as human rights issues, interdisciplinary team work and preventative health are poorly represented in intellectual disability teaching. Elective content varies markedly across universities (1 to 122 h), but emergency medicine, women's health, men's health and many other specialist medicine areas are not represented. Inclusive practice is inconsistent in degree and nature, but a majority of universities (nine) involve people with intellectual disability in the development or delivery

  15. Friendships and Intimate Relationships among People with Intellectual Disabilities: A Thematic Synthesis.

    Science.gov (United States)

    Fulford, Casey; Cobigo, Virginie

    2018-01-01

    The purpose of this thematic synthesis was to review qualitative studies on perspectives of persons with intellectual disabilities regarding friendships and intimate relationships. A literature search was conducted, including studies published between 2004 and 2014, involving participants 14 years of age or older, who had intellectual disabilities, and participated in focus groups or interviews. Eighteen studies were included. Three master themes were identified: (i) How do I know someone is my friend? (ii) How do I know someone is my boyfriend or girlfriend? and (iii) What helps and hinders relationships? Understanding how people with intellectual disabilities describe relationships, and being aware of factors that support and impede relationships, will aid stakeholders in developing training, policies, programmes and services. Knowledge translation of research that focuses on strategies aimed at supporting relationships is crucial to affect change in applied settings and improve quality of life for persons with intellectual disabilities. © 2016 John Wiley & Sons Ltd.

  16. A survey on awareness of parents about friendship between their children with an intellectual disability and children without a disability

    OpenAIRE

    渋谷, 真二; 今野, 和夫; SHIBUYA, Shinji; KONNO, Kazuo

    2009-01-01

    The awareness of parents about friendship between their children with an intellectual disability and children without a disability is an important factor for their children to make friends without a disability. A questionnare survey was used to parents of upper secondary department of special schools for students with an intellectual disability. They thought that their children had fewer opportunities to get involved with children without a disability. Many of them wished that their children ...

  17. Identifying classes of persons with mild intellectual disability or borderline intellectual functioning : A latent class analysis

    NARCIS (Netherlands)

    Nouwens, P.J.G.; Lucas, R.; Smulders, N.B.M.; Embregts, P.J.C.M.; van Nieuwenhuizen, Ch.

    2017-01-01

    Background Persons with mild intellectual disability or borderline intellectual functioning are often studied as a single group with similar characteristics. However, there are indications that differences exist within this population. Therefore, the aim of this study was to identify classes of

  18. Prevalence of Falls and Risk Factors in Adults with Intellectual Disability

    Science.gov (United States)

    Hsieh, Kelly; Rimmer, James; Heller, Tamar

    2012-01-01

    The purpose of this study was to examine the prevalence of falls and risk factors for falls in 1,515 adults (greater than or equal to 18 years) with intellectual disability using baseline data from the Longitudinal Health and Intellectual Disability Study. Nearly 25% of adults from the study were reported to have had one or more falls in the past…

  19. Carer Knowledge and Perceptions of Healthy Lifestyles for Adults with Intellectual Disabilities

    Science.gov (United States)

    Melville, Craig A.; Hamilton, Sarah; Miller, Susan; Boyle, Susan; Robinson, Nicola; Pert, Carol; Hankey, Catherine R.

    2009-01-01

    Background: Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers' training needs on diet and physical activity. Methods: A cross-sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities.…

  20. Masculinity Theory in Applied Research with Men and Boys with Intellectual Disability

    Science.gov (United States)

    Wilson, Nathan John; Shuttleworth, Russell; Stancliffe, Roger; Parmenter, Trevor

    2012-01-01

    Researchers in intellectual disability have had limited theoretical engagement with mainstream theories of masculinity. In this article, the authors consider what mainstream theories of masculinity may offer to applied research on, and hence to therapeutic interventions with, men and boys with intellectual disability. An example from one research…

  1. A Comparison of Two Methods for Recruiting Children with an Intellectual Disability

    Science.gov (United States)

    Adams, Dawn; Handley, Louise; Heald, Mary; Simkiss, Doug; Jones, Alison; Walls, Emily; Oliver, Chris

    2017-01-01

    Background: Recruitment is a widely cited barrier of representative intellectual disability research, yet it is rarely studied. This study aims to document the rates of recruiting children with intellectual disabilities using two methods and discuss the impact of such methods on sample characteristics. Methods: Questionnaire completion rates are…

  2. Strategies to Advance Drug Discovery in Rare Monogenic Intellectual Disability Syndromes

    Science.gov (United States)

    Hettige, Nuwan C; Manzano-Vargas, Karla; Jefri, Malvin; Ernst, Carl

    2018-01-01

    Abstract Some intellectual disability syndromes are caused by a mutation in a single gene and have been the focus of therapeutic intervention attempts, such as Fragile X and Rett Syndrome, albeit with limited success. The rate at which new drugs are discovered and tested in humans for intellectual disability is progressing at a relatively slow pace. This is particularly true for rare diseases where so few patients make high-quality clinical trials challenging. We discuss how new advances in human stem cell reprogramming and gene editing can facilitate preclinical study design and we propose new workflows for how the preclinical to clinical trajectory might proceed given the small number of subjects available in rare monogenic intellectual disability syndromes. PMID:29040584

  3. Aging in Rare Intellectual Disability Syndromes

    Science.gov (United States)

    Dykens, Elisabeth M.

    2013-01-01

    This review highlights several methodological challenges involved in research on aging, health, and mortality in adults with rare intellectual disability syndromes. Few studies have been performed in this area, with research obstacles that include: the ascertainment of older adults with genetic versus clinical diagnoses; likelihood that adults…

  4. Computerised cognitive-behavioural therapy for adults with intellectual disability: randomised controlled trial.

    Science.gov (United States)

    Cooney, Patricia; Jackman, Catherine; Coyle, David; O'Reilly, Gary

    2017-08-01

    Background Despite the evidence base for computer-assisted cognitive-behavioural therapy (CBT) in the general population, it has not yet been adapted for use with adults who have an intellectual disability. Aims To evaluate the utility of a CBT computer game for adults who have an intellectual disability. Method A 2 × 3 (group × time) randomised controlled trial design was used. Fifty-two adults with mild to moderate intellectual disability and anxiety or depression were randomly allocated to two groups: computerised CBT (cCBT) or psychiatric treatment as usual (TAU), and assessed at pre-treatment, post-treatment and 3-month follow-up. Forty-nine participants were included in the final analysis. Results A significant group × time interaction was observed on the primary outcome measure of anxiety (Glasgow Anxiety Scale for people with an Intellectual Disability), favouring cCBT over TAU, but not on the primary outcome measure of depression (Glasgow Depression Scale for people with a Learning Disability). A medium effect size for anxiety symptoms was observed at post-treatment and a large effect size was observed after follow-up. Reliability of Change Indices indicated that the intervention produced clinically significant change in the cCBT group in comparison with TAU. Conclusions As the first application of cCBT for adults with intellectual disability, this intervention appears to be a useful treatment option to reduce anxiety symptoms in this population. © The Royal College of Psychiatrists 2017.

  5. Predictors of admission to a high-security hospital of people with intellectual disability with and without schizophrenia.

    Science.gov (United States)

    Doody, G A; Thomson, L D; Miller, P; Johnstone, E C

    2000-04-01

    Admission to secure hospital facilities is a rare outcome for people with intellectual disability with or without concomitant psychosis. The present study compares people with mild intellectual disability with and without schizophrenia resident in the Scottish and Northern Irish State Hospital, Carstairs, to matched mild intellectual disability controls, also with and without schizophrenia, in the community. It is hoped that this study may identify socio-demographic, clinical or historical predictors which may lead to admission to secure hospital facilities for people with mild intellectual disability. One hundred and eight subjects were identified from two previous studies which concerned State Hospital patients and patients with intellectual disability with and without schizophrenia. Four experimental groups were derived: (1) 14 individuals with comorbid intellectual disability and schizophrenia who had been resident in the State Hospital; (2) 34 comorbid community control subjects; (3) 33 individuals with intellectual disability and no psychosis who had been resident in the State Hospital; and (4) 27 community control subjects with mild intellectual disability. The four groups were compared on a range of socio-demographic, historical and clinical variables obtained from case records and subject interviews. Relative to community controls, people with intellectual disability and no psychosis in the State Hospital are likely to be single, to have a later age of first psychiatric hospital admission, and to have a history of previous suicide attempts, alcohol abuse or drug misuse. Subjects with comorbid intellectual disability and schizophrenia in the State Hospital are more likely to be male, to have an early age of first psychiatric admission, and to have no family history of either schizophrenia or intellectual disability. Strategies aimed at addressing suicidal behaviour, alcohol and drug misuse amongst people with intellectual disability may facilitate a

  6. Dental Care among Young Adults with Intellectual Disability

    Science.gov (United States)

    Kancherla, Vijaya; Van Naarden Braun, Kim; Yeargin-Allsopp, Marshalyn

    2013-01-01

    Dental care among young adults with intellectual disability (ID) is poorly documented and largely unmet. By using population-based data from the Metropolitan Atlanta Developmental Disabilities Follow-Up Study, we assessed factors associated with at least one or two dental visits per year among young adults with and without ID. Significantly fewer…

  7. "You Have to Care." Perceptions of Promoting Autonomy in Support Settings for Adults with Intellectual Disability

    Science.gov (United States)

    Petner-Arrey, Jami; Copeland, Susan R.

    2015-01-01

    This study from the south-western United States investigated the perceptions of persons with intellectual disability receiving support and of persons providing support regarding the autonomy of people with intellectual disability. The participants included 10 people with intellectual disability and 10 support workers. Through interviews, this…

  8. A survey of clinical nursing skills in intellectual disability nursing

    OpenAIRE

    McKeon, Michael

    2009-01-01

    In this study the question asked is: what clinical nursing skills are predominantly used in intellectual disability nursing? A survey of the nursing needs of people with moderate to severe intellectual disability in both residential and community units was undertaken with a questionnaire.The measure was a Likert design scale ranging across: skills used more than once a day, skills used daily, skills used weekly, skills used monthly, skills very rarely used, and skills never used.The results o...

  9. Ensuring oral health for older individuals with intellectual and developmental disabilities.

    Science.gov (United States)

    Waldman, H Barry; Perlman, Steven P

    2012-04-01

    To emphasise the oral health needs of older individuals with intellectual and developmental disabilities, the impact on the individual's general health and the role that can be played by nurses. All too often an examination and consideration of the oral health condition of this patient population by nurses/physicians is cursory at best. The increasing retention of the dentition into later years of life provides both the favourable abilities for eating, speech and self esteem, but also the potential for local and general health concerns. Discursive paper. Based on the findings from dental examination of thousands of international athletes in the Special Olympic Games and clinical experiences in academic and private practice settings for care of individuals with intellectual and developmental disabilities, a discursive listing was developed for use in a preliminary examination of the oral cavity. A nurse can play a critical role in the examination, preventive services and referrals for dental care for older individuals with intellectual and developmental disabilities. The specific oral health needs of older individuals with intellectual and developmental disabilities should be an integral component of the preventive and general health care provided by nurses. © 2012 Blackwell Publishing Ltd.

  10. NDST1 missense mutations in autosomal recessive intellectual disability.

    Science.gov (United States)

    Reuter, Miriam S; Musante, Luciana; Hu, Hao; Diederich, Stefan; Sticht, Heinrich; Ekici, Arif B; Uebe, Steffen; Wienker, Thomas F; Bartsch, Oliver; Zechner, Ulrich; Oppitz, Cornelia; Keleman, Krystyna; Jamra, Rami Abou; Najmabadi, Hossein; Schweiger, Susann; Reis, André; Kahrizi, Kimia

    2014-11-01

    NDST1 was recently proposed as a candidate gene for autosomal recessive intellectual disability in two families. It encodes a bifunctional GlcNAc N-deacetylase/N-sulfotransferase with important functions in heparan sulfate biosynthesis. In mice, Ndst1 is crucial for embryonic development and homozygous null mutations are perinatally lethal. We now report on two additional unrelated families with homozygous missense NDST1 mutations. All mutations described to date predict the substitution of conserved amino acids in the sulfotransferase domain, and mutation modeling predicts drastic alterations in the local protein conformation. Comparing the four families, we noticed significant overlap in the clinical features, including both demonstrated and apparent intellectual disability, muscular hypotonia, epilepsy, and postnatal growth deficiency. Furthermore, in Drosophila, knockdown of sulfateless, the NDST ortholog, impairs long-term memory, highlighting its function in cognition. Our data confirm NDST1 mutations as a cause of autosomal recessive intellectual disability with a distinctive phenotype, and support an important function of NDST1 in human development. © 2014 Wiley Periodicals, Inc.

  11. Dementia care mapping to support staff in the care of people with intellectual disability and dementia: a feasibility study.

    Science.gov (United States)

    Schaap, Feija D; Fokkens, Andrea S; Dijkstra, Geke J; Reijneveld, Sijmen A; Finnema, Evelyn J

    2018-04-24

    The number of people with intellectual disability and dementia increases; this combination causes behavioural changes. Dementia Care Mapping (DCM) supports staff in dementia care in nursing homes and may be useful in intellectual disability-care. This qualitative study examines the feasibility of DCM for older people with intellectual disability and dementia. The present authors obtained data in focus groups and interviews with professional users and analysed using a framework for feasibility studies. With experts in dementia and intellectual disability researches, the present authors determined the overall feasibility. DCM was found to be feasible in intellectual disability-care, regarding five domains of feasibility. Staff reported DCM to be useful and valuable and addresses to their demand for skills and knowledge. All professional users found DCM feasible in intellectual disability-care, which was confirmed by experts. DCM is feasible in intellectual disability-care. When fully tailored to intellectual disability-care, DCM is useful and provides opportunities to assess its effectiveness. © 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.

  12. Intellectual disability health content within nursing curriculum: An audit of what our future nurses are taught.

    Science.gov (United States)

    Trollor, Julian N; Eagleson, Claire; Turner, Beth; Salomon, Carmela; Cashin, Andrew; Iacono, Teresa; Goddard, Linda; Lennox, Nicholas

    2016-10-01

    Individuals with intellectual disability experience chronic and complex health issues, but face considerable barriers to healthcare. One such barrier is inadequate education of healthcare professionals. To establish the quantity and nature of intellectual disability content offered within Australian nursing degree curricula. A two-phase national audit of nursing curriculum content was conducted using an interview and online survey. Australian nursing schools offering pre-registration courses. Pre-registration course coordinators from 31 universities completed the Phase 1 interview on course structure. Unit coordinators and teaching staff from 15 universities in which intellectual disability content was identified completed the Phase 2 online survey. Quantity of compulsory and elective intellectual disability content offered (units and teaching time) and the nature of the content (broad categories, specific topics, and inclusive teaching) were audited using an online survey. Over half (52%) of the schools offered no intellectual disability content. For units of study that contained some auditable intellectual disability content, the area was taught on average for 3.6h per unit of study. Units were evenly distributed across the three years of study. Just three participating schools offered 50% of all units audited. Clinical assessment skills, and ethics and legal issues were most frequently taught, while human rights issues and preventative health were poorly represented. Only one nursing school involved a person with intellectual disability in content development or delivery. Despite significant unmet health needs of people with intellectual disability, there is considerable variability in the teaching of key intellectual disability content, with many gaps evident. Equipping nursing students with skills in this area is vital to building workforce capacity. Crown Copyright © 2016. Published by Elsevier Ltd. All rights reserved.

  13. On self-identity: the process of inclusion of individuals with intellectual disabilities in the military.

    Science.gov (United States)

    Werner, Shirli; Hochman, Yael

    2018-02-23

    Identity development among individuals with disabilities may depend on their being included in central institutions in society. The centrality of the military in Israeli society makes it a highly important setting for inclusion and identity development. We examined the self-identity of young adults with intellectual disabilities who serve in the "Equal in Uniform" project. Forty-nine interviews were conducted with 31 individuals with intellectual disabilities. Findings showed that military service helped develop the identity of soldiers, which enhanced their self-efficacy. Participants described their participation in the military as an opportunity to take an active part in socially valued roles. Findings are discussed with reference to the effect of the project on the self-identity of individuals with intellectual disabilities. The meaning of successfully serving in socially valued roles for self-efficacy is discussed. Implications for rehabilitation Completing socially valued roles leads to greater self-efficacy, enhanced self-esteem and greater psychological well-being among individuals with intellectual disabilities. Inclusion of individuals with intellectual disabilities within a central community setting (specifically the military) allows them to deal with issues of identity development, as it does for other young people without intellectual disabilities. Receiving ongoing positive input from others for one's abilities and success is a conducive factor in positive identity formation.

  14. Stability of cognitive performance in children with mild intellectual disability.

    Science.gov (United States)

    Jenni, Oskar G; Fintelmann, Sylvia; Caflisch, Jon; Latal, Beatrice; Rousson, Valentin; Chaouch, Aziz

    2015-05-01

    Longitudinal studies that have examined cognitive performance in children with intellectual disability more than twice over the course of their development are scarce. We assessed population and individual stability of cognitive performance in a clinical sample of children with borderline to mild non-syndromic intellectual disability. Thirty-six children (28 males, eight females; age range 3-19y) with borderline to mild intellectual disability (Full-scale IQ [FSIQ] 50-85) of unknown origin were examined in a retrospective clinical case series using linear mixed models including at least three assessments with standardized intelligence tests. Average cognitive performance remained remarkably stable over time (high population stability, drop of only 0.38 IQ points per year, standard error=0.39, p=0.325) whereas individual stability was at best moderate (intraclass correlation of 0.58), indicating that about 60% of the residual variation in FSIQ scores can be attributed to between-child variability. Neither sex nor socio-economic status had a statistically significant impact on FSIQ. Although intellectual disability during childhood is a relatively stable phenomenon, individual stability of IQ is only moderate, likely to be caused by test-to-test reliability (e.g. level of child's cooperation, motivation, and attention). Therefore, clinical decisions and predictions should not rely on single IQ assessments, but should also consider adaptive functioning and previous developmental history. © 2014 Mac Keith Press.

  15. Using applied behavior analysis and smart technology for meeting the health needs of individuals with intellectual disabilities.

    Science.gov (United States)

    Haymes, Linda K; Storey, Keith; Maldonado, Ana; Post, Michal; Montgomery, Joyce

    2015-01-01

    Individuals with intellectual disabilities often have special healthcare concerns such as diabetes, kidney disease, severe allergies, progressive illnesses, respiratory weaknesses, and obesity. Smart technology can be an asset for individuals with intellectual disabilities for better managing their healthcare needs. A critical review of the literature related to applied behavior analysis, smart technology, and health needs of individuals with intellectual disabilities was conducted. This discussion paper describes factors that contribute to the successful use of smart technology for the health issues of individuals with intellectual disabilities. We see key components in developing appropriate access and use of smart technology for the health of people with intellectual disabilities being: (a) systematic instructional methods for consistent and accurate use of the technology, (b) modifying the current technology for people with intellectual disabilities, (c) guidelines for implementation, and (d) resources for getting the technology.

  16. Prevalence of mental illness, intellectual disability, and developmental disability among homeless people in Nagoya, Japan: A case series study.

    Science.gov (United States)

    Nishio, Akihiro; Yamamoto, Mayumi; Ueki, Hirofumi; Watanabe, Takahiro; Matsuura, Kenshin; Tamura, Osamu; Uehara, Ryosuke; Shioiri, Toshiki

    2015-09-01

    While it has been reported that the prevalence of mental illness is higher in homeless people than in the national population, few studies have investigated the prevalence of intellectual and developmental disability among the homeless. In this study, we conducted a survey to comprehensively assess these mental problems among homeless people in Nagoya, Japan. The subjects were 18 homeless men. Mental illness was diagnosed with semi-structured interviews conducted by psychiatrists. We used the Wechsler Adult Intelligence Scale III to diagnose intellectual disability. Discrepancies between Wechsler Adult Intelligence Scale III subtest scores were used as criteria for developmental disability. Eleven of the 18 participants were diagnosed with mental illness: six with mood disorder, two with psychotic disorder, and six with alcohol problems. The mean IQ of all subjects was 83.4 ± 27.4. The 95% confidence interval (CI) was 96.2-69.1. Seven participants were found to have intellectual disability. Three men showed discrepancies of more than 10 between subtest scores, and all of them were diagnosed with a mental illness. We divided the participants into four groups: those with mental illness only; those with intellectual disability only; those with both problems; and those without diagnosis. The men with intellectual disability only were significantly younger and had been homeless since a younger age than the other groups. Participants diagnosed with a mental illness had been homeless for longer than those without mental health problems. Although the sample size was limited, this study revealed the high prevalence of mental illness and intellectual disability, 61% (95%CI, 35-83%) and 39% (95%CI, 17-64%), respectively, in homeless people in Nagoya, Japan. © 2014 The Authors. Psychiatry and Clinical Neurosciences © 2014 Japanese Society of Psychiatry and Neurology.

  17. Interventions to promote physical activity for adults with intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Viviene A Temple

    2017-07-01

    Full Text Available Objective. To describe interventions designed to promote physical activity for adults with intellectual disabilities and the effects on overall physical activity levels and on health outcomes. Materials and methods. A systematic review of eight databases until January 31, 2015 identified 383 citations. The inclusion criteria were: a the study sample consisted of adults with intellectual disabilities, b the study implemented an intervention to initiate, increase, or maintain physical activity, and c quantitative or qualitative data were used to report the effectiveness of the intervention. Six articles from the 383 citations met this criterion. Results. Three studies resulted in significant increases in physical activity behaviour; however well-controlled trials designed to improve weight status by increasing physical activity did not produce significant effects. Conclusion. Overall, the results indicate that interventions to increase physical activity should simultaneously target the individual with intellectual disability as well as their proximal environment over a sustained period of time.

  18. Updates in the genetic evaluation of the child with global developmental delay or intellectual disability.

    Science.gov (United States)

    Flore, Leigh Anne; Milunsky, Jeff M

    2012-12-01

    Global developmental delay (GDD) and intellectual disability (ID) occur in up to 3% of the general population and are even more commonly encountered in the setting of the pediatric neurology clinic. New advances in technology and in the understanding of genetic disorders have led to changes in the diagnostic approach to a child with unexplained GDD or ID. Chromosomal microarray has become a first-line test for evaluation of patients in this population and has both significantly increased diagnostic yield and introduced new challenges in the interpretation of copy number variants of uncertain significance. The G-banded karyotype is now frequently utilized as an adjunct to the microarray rather than as a first-line test in individuals with GDD or ID. Fragile X DNA testing continues to be recommended in the initial evaluation of the child with GDD or ID. The presence or absence of certain cardinal features (such as microcephaly or macrocephaly, seizures, autism, abnormal neurologic examination, and facial dysmorphism) can be utilized to direct single-gene molecular testing. The availability of next-generation and massively parallel sequencing technologies has enabled the use of genetic testing panels, in which dozens of genes associated with GDD or ID may be rapidly analyzed. Most recently, the clinical availability of whole-genome and whole-exome sequencing has opened new possibilities for the evaluation of individuals with GDD or ID who have previously eluded a genetic diagnosis. Consultation with a medical geneticist is recommended when progressing beyond first-tier analyses to most efficiently prioritize testing. Copyright © 2012 Elsevier Inc. All rights reserved.

  19. Self-Reported Participation in Sport/Exercise Among Adolescents and Young Adults With and Without Mild to Moderate Intellectual Disability.

    Science.gov (United States)

    Robertson, Janet; Emerson, Eric; Baines, Susannah; Hatton, Chris

    2018-04-01

    Physical inactivity is a leading risk factor for mortality. Adults with intellectual disability are extremely inactive, but less is known about physical activity levels in children and youth with intellectual disability. This paper examines the participation by adolescents and young adults with and without mild to moderate intellectual disability in sport/exercise. Secondary analysis was undertaken of Next Steps, an annual panel study that followed a cohort from early adolescence into adulthood. Participants with mild to moderate intellectual disability were identified through data linkage with educational records. Sport/exercise participation rates were consistently lower for adolescents and young people with mild to moderate intellectual disability than for their peers without intellectual disability. Matching participants on between-group differences in exposure to extraneous risk factors did not impact on these between-group differences in participation in sport/exercise. The results support limited existing evidence regarding the low level of participation of children and young people with intellectual disability in sport/exercise compared with their peers. Future work on promoting sport/exercise and physical activity in children and young people with intellectual disability may play a role in helping to reduce the health inequalities experienced by people with intellectual disability.

  20. Dr. Tulp attends the soft machine: patient simulators, user involvement and intellectual disability.

    Science.gov (United States)

    McClimens, Alex; Lewis, Robin; Brewster, Jacqui

    2012-09-01

    Simulation as a way to teach clinical skills attracts much critical attention. Its benefits, however, might be significantly reduced when the simulation model used relies exclusively on patient simulators. This is particularly true if the intended patient population for students taught is characterized by intellectual disability. Learning to care for people with intellectual disability might be better supplemented when the simulation model used incorporates input from 'real' people. If these people themselves have intellectual disabilities then the verisimilitude of the simulation will be higher and the outcomes for learners and potential patients will also be improved.

  1. Examining Rater Effects of the TGMD-2 on Children with Intellectual Disability

    Science.gov (United States)

    Kim, Youngdeok; Park, Ilhyeok; Kang, Minsoo

    2012-01-01

    The purpose of this study was to investigate rater effects on the TGMD-2 when it applied to children with intellectual disability. A total of 22 children with intellectual disabilities participated in this study. Children's performances in each of 12 subtests of the TGMD-2 were recorded via video and scored by three adapted physical activity…

  2. Executive Function in Children with Intellectual Disability--The Effects of Sex, Level and Aetiology of Intellectual Disability

    Science.gov (United States)

    Memisevic, H.; Sinanovic, O.

    2014-01-01

    Background: Executive function is very important in the children's overall development. The goal of this study was to assess the executive function in children with intellectual disability (ID) through the use of the Behavior Rating Inventory of Executive Function (BRIEF) teacher version. An additional goal was to examine the differences in…

  3. Delays in early neuropsychic development: Approaches to diagnosis

    Directory of Open Access Journals (Sweden)

    N. N. Zavadenko

    2015-01-01

    Full Text Available The population frequency of neuropsychic developmental delays in infants is estimated at nearly 10%; that of global intellectual disability (mental retardation is at 1-3%. Delayed development is denned as a substantial retardation as compared to the standard indicators in any of the basic spheres: motor, communicative, cognitive, adaptive-behavioral, and socioemotional ones. Global developmental delay is characterized by a significant lag in two or more spheres. The use of current diagnostic techniques, such as the Bayley or Griffiths scales, can provide an objective quantitative assessment of both an infant's overall development and indicators in individual spheres. At the preliminary examination stage, it is expedient to carry out a Denver developmental screening test that may be directly used in a doctor's consulting room. The causes of global developmental delay/intellectual disability in infants may be perinatal central nervous system (CNS lesions; brain malformations; intrauterine infections; intrauterine intoxications; early-onset psychoneurological diseases (neuroinfections, CNS injuries, epilepsies, autism spectrum disorders, etc.; congenital hypothyroidism; genetic diseases. Among all genetic causes of global developmental delay/intellectual disability, there are chromosomal anomalies (25-30%, monogenic diseases (metabolic diseases, neuroectodermal syndromes, diseases with predominant grey and white matter involvement. The diagnostic possibilities of current genetic methods are considered.

  4. Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities.

    Science.gov (United States)

    Burke, Meghan M; Taylor, Julie Lounds; Urbano, Richard; Hodapp, Robert M

    2012-01-01

    With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving expectations. Siblings expected to assume greater caregiving responsibility for their brother or sister with disabilities if they were female, had closer relationships with and lived closer to their brother or sister with intellectual and developmental disabilities, and were the lone sibling without a disability. Siblings who expected to assume higher levels of caregiving had parents who were currently more able to care for their brother or sister with disabilities. With a better understanding of who intends to fulfill future caregiving roles, support can be provided to these siblings.

  5. Characteristics of People with Intellectual Disabilities in a Secure U.S. Forensic Hospital

    Science.gov (United States)

    Stinson, Jill Diane; Robbins, Sharon Bradford

    2014-01-01

    Prior research examining persons with intellectual disabilities who have committed criminal offenses has focused primarily on correctional populations, or those who reside in secure forensic settings in the United Kingdom and Australia. This study describes 235 persons with intellectual, developmental, and cognitive disabilities who reside in a…

  6. Love and Resistance of Mothers with Intellectual Disability from Ethnocultural Communities in Canada

    Science.gov (United States)

    Pacheco, Laura; McConnell, David

    2017-01-01

    Background: Mothers with intellectual disability are thought to be passive, dependent and in need of protection. This study contributes to a nascent body of research that challenges this schema, revealing how women with intellectual disability who are mothers resist oppression. Methods: Narrative research methods underpinned by intersectionality…

  7. Community Involvement of Young Adults with Intellectual Disabilities: Their Experiences and Perspectives on Inclusion.

    Science.gov (United States)

    Hall, Sarah A

    2017-09-01

    Inclusion in the community is essential to enhancing a person's quality of life. Although people with intellectual disabilities have a desire to be more involved in activities, they experience barriers that limit their inclusion. The purpose of this study was to describe the community involvement of young adults with intellectual disability. I interviewed fourteen young adults with intellectual disability to explore their involvement in work, recreation and leisure activities. Four themes emerged from the data: vocational endeavours, leisure pursuits, social inclusion and supports. The contexts of their experiences either facilitated or hindered their community involvement. The community involvement of young adults with intellectual disability varies depending on the opportunities and supports available to them. Their inclusion in the community may be enhanced by additional transportation options, continuing education in vocational and social skills, personalized guidance from group members and environments that are welcoming to people with disabilities. © 2016 John Wiley & Sons Ltd.

  8. "It Is Only Natural….": Attitudes of Young People with Intellectual Disabilities toward Sexuality in Greece

    Science.gov (United States)

    Karellou, Ioanna

    2017-01-01

    Although there is an increasing awareness of the rights of people with intellectual disabilities, limited progress has been made in supporting people with intellectual disabilities to create and sustain intimate personal relationships in Greece. This article looks at the attitudes of 66 adolescents and young adults with intellectual disabilities…

  9. Adapting Building Design to Access by Individuals with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    L Castell

    2012-11-01

    Full Text Available Over the last 15 years, since introductionof the Disability Discrimination Act (DDA(Commonwealth Government of Australia,1992, there has been much discussionabout the extent and nature of buildingaccess for the disabled, particularly inresponse to proposed revisions to theBuilding Code of Australia (BCA and theintroduction of a Premises Standardcovering building access. Much of theargument which contributed to the twoyear delay in submitting a final version ofthese documents for government approvalrelated to the extent of access provisionsand the burden of cost. The final versionsubmitted to government by the AustralianBuilding Codes Board (ABCB (notreleased publicly appears to still containinconsistencies between the DDA and theBCA in several areas such as wayfindingand egress.In the debate preceding submission of thefinal version there appears to have beenlittle reference to access requirements forindividuals with intellectual disability (ID.This may be due to a general lack ofresearch on the topic. Consequently, thispaper uses a combination of theknowledge gained from a limited numberof previous wayfinding studies, literaturedescribing general problems faced bythose with ID and the author’s personalexperience observing others with ID tocreate a list of probable difficulties andsuggested solutions. The paperconcludes with a discussion about theassociated cost implications and benefitsin providing the required access.

  10. Caregiver awareness of reproductive health issues for women with intellectual disabilities

    OpenAIRE

    Lin, Lan-Ping; Lin, Pei-Ying; Hsu, Shang-Wei; Loh, Ching-Hui; Lin, Jin-Ding; Lai, Chia-Im; Chien, Wu-Chien; Lin, Fu-Gong

    2011-01-01

    Abstract Background Limited attention has been paid to the issue of reproductive health as it affects women with intellectual disabilities, despite reproductive health being a vital issue in public health policy for women in the general population. This paper describes caregiver awareness of reproductive health issues relative to women with intellectual disabilities who are being cared for in welfare institutions in Taiwan. Methods The study employed a cross-sectional, questionnaire-based stu...

  11. A critical appraisal of Western Cape Forum for Intellectual Disability ...

    African Journals Online (AJOL)

    The 2011 the Western Cape Forum for Intellectual Disability v Government of The Republic of South Africa case flagged a lot of issues faced by persons with disabilities relating to access to education in South Africa. The case tackled certain perceptions about the ineducability of persons with profound and severe disability ...

  12. Social Interaction with Adults with Severe Intellectual Disability: Having Fun and Hanging Out

    Science.gov (United States)

    Johnson, Hilary; Douglas, Jacinta; Bigby, Christine; Iacono, Teresa

    2012-01-01

    Background: Social interaction is integral to social inclusion. Little is known about the nature of social interaction between adults with severe intellectual disability and those with whom they engage. Method: Participants were six adults with intellectual disability and people identified as those with whom they shared demonstrable pleasurable…

  13. Practitioners Who Work with Parents with Intellectual Disability: Stress, Coping and Training Needs

    Science.gov (United States)

    Clayton, Olivia; Chester, Andrea; Mildon, Robyn; Matthews, Jan

    2008-01-01

    Background: Challenges for practitioners who work with parents with intellectual disability arise from several sources. The purpose of the current study was to identify the stressors experienced by practitioners who work with parents with intellectual disability in Australia, investigate coping strategies and explore training needs so as to inform…

  14. Needs and Supports of People with Intellectual Disability and Their Families in Catalonia

    Science.gov (United States)

    Vilaseca, Rosa; Gràcia, Marta; Beltran, Francesc S.; Dalmau, Mariona; Alomar, Elisabeth; Adam-Alcocer, Ana Luisa; Simó-Pinatella, David

    2017-01-01

    Background: The study assesses the support needs of individuals with intellectual disability and their families in Catalonia. The present authors examine family quality of life (FQoL), identify the individual services required and assess families' perceptions of the extent to which their family member with intellectual disability and they…

  15. Intellectual disability in Africa: implications for research and service development.

    Science.gov (United States)

    McKenzie, Judith Anne; McConkey, Roy; Adnams, Colleen

    2013-09-01

    Although intellectual disability (ID) is probably the largest impairment grouping on the African continent, few indigenous research and evaluation studies have been undertaken. This article is an initial attempt to relate service delivery issues to an African research agenda. We critically analysed the available literature, drawing on academic publications and those of non-governmental agencies. In this process we identified several key issues for further investigation, namely: understanding ID in African contexts, access to education and health care, the provision of appropriate assistance and support, and income generation. We relate our analysis to the recommendations made in the World Report on Disability but with a specific focus on ID in Africa. The need for mainstreaming and prioritising ID in non-disability related and across impairment programmes is highlighted. We note the importance of families and emphasise the need to draw on informal and traditional forms of care and participation. The need for reliable research evidence to support practice is highlighted. We conclude with a call to action by and on behalf of individuals with ID to be included in the development priorities of the continent. Implications for Rehabilitation Service provision for people with intellectual disabilities in Africa is not always well served by insights obtained from western research agendas. Appropriate and effective rehabilitation requires an understanding of the context and the environment in which the disabled person operates. Indigenous research into the provision of support to families and the inclusion of persons with intellectual disability into mainstream programmes as well as disability specific provision is recommended.

  16. Copy Number Variations Found in Patients with a Corpus Callosum Abnormality and Intellectual Disability.

    Science.gov (United States)

    Heide, Solveig; Keren, Boris; Billette de Villemeur, Thierry; Chantot-Bastaraud, Sandra; Depienne, Christel; Nava, Caroline; Mignot, Cyril; Jacquette, Aurélia; Fonteneau, Eric; Lejeune, Elodie; Mach, Corinne; Marey, Isabelle; Whalen, Sandra; Lacombe, Didier; Naudion, Sophie; Rooryck, Caroline; Toutain, Annick; Caignec, Cédric Le; Haye, Damien; Olivier-Faivre, Laurence; Masurel-Paulet, Alice; Thauvin-Robinet, Christel; Lesne, Fabien; Faudet, Anne; Ville, Dorothée; des Portes, Vincent; Sanlaville, Damien; Siffroi, Jean-Pierre; Moutard, Marie-Laure; Héron, Delphine

    2017-06-01

    To evaluate the role that chromosomal micro-rearrangements play in patients with both corpus callosum abnormality and intellectual disability, we analyzed copy number variations (CNVs) in patients with corpus callosum abnormality/intellectual disability STUDY DESIGN: We screened 149 patients with corpus callosum abnormality/intellectual disability using Illumina SNP arrays. In 20 patients (13%), we have identified at least 1 CNV that likely contributes to corpus callosum abnormality/intellectual disability phenotype. We confirmed that the most common rearrangement in corpus callosum abnormality/intellectual disability is inverted duplication with terminal deletion of the 8p chromosome (3.2%). In addition to the identification of known recurrent CNVs, such as deletions 6qter, 18q21 (including TCF4), 1q43q44, 17p13.3, 14q12, 3q13, 3p26, and 3q26 (including SOX2), our analysis allowed us to refine the 2 known critical regions associated with 8q21.1 deletion and 19p13.1 duplication relevant for corpus callosum abnormality; report a novel 10p12 deletion including ZEB1 recently implicated in corpus callosum abnormality with corneal dystrophy; and) report a novel pathogenic 7q36 duplication encompassing SHH. In addition, 66 variants of unknown significance were identified in 57 patients encompassed candidate genes. Our results confirm the relevance of using microarray analysis as first line test in patients with corpus callosum abnormality/intellectual disability. Copyright © 2017 Elsevier Inc. All rights reserved.

  17. De novo mutations of KIAA2022 in females cause intellectual disability and intractable epilepsy

    Science.gov (United States)

    de Lange, Iris M; Helbig, Katherine L; Weckhuysen, Sarah; Møller, Rikke S; Velinov, Milen; Dolzhanskaya, Natalia; Marsh, Eric; Helbig, Ingo; Devinsky, Orrin; Tang, Sha; Mefford, Heather C; Myers, Candace T; van Paesschen, Wim; Striano, Pasquale; van Gassen, Koen; van Kempen, Marjan; de Kovel, Carolien G F; Piard, Juliette; Minassian, Berge A; Nezarati, Marjan M; Pessoa, André; Jacquette, Aurelia; Maher, Bridget; Balestrini, Simona; Sisodiya, Sanjay; Warde, Marie Therese Abi; De St Martin, Anne; Chelly, Jamel; van ‘t Slot, Ruben; Van Maldergem, Lionel; Brilstra, Eva H; Koeleman, Bobby P C

    2016-01-01

    Background Mutations in the KIAA2022 gene have been reported in male patients with X-linked intellectual disability, and related female carriers were unaffected. Here, we report 14 female patients who carry a heterozygous de novo KIAA2022 mutation and share a phenotype characterised by intellectual disability and epilepsy. Methods Reported females were selected for genetic testing because of substantial developmental problems and/or epilepsy. X-inactivation and expression studies were performed when possible. Results All mutations were predicted to result in a frameshift or premature stop. 12 out of 14 patients had intractable epilepsy with myoclonic and/or absence seizures, and generalised in 11. Thirteen patients had mild to severe intellectual disability. This female phenotype partially overlaps with the reported male phenotype which consists of more severe intellectual disability, microcephaly, growth retardation, facial dysmorphisms and, less frequently, epilepsy. One female patient showed completely skewed X-inactivation, complete absence of RNA expression in blood and a phenotype similar to male patients. In the six other tested patients, X-inactivation was random, confirmed by a non-significant twofold to threefold decrease of RNA expression in blood, consistent with the expected mosaicism between cells expressing mutant or normal KIAA2022 alleles. Conclusions Heterozygous loss of KIAA2022 expression is a cause of intellectual disability in females. Compared with its hemizygous male counterpart, the heterozygous female disease has less severe intellectual disability, but is more often associated with a severe and intractable myoclonic epilepsy. PMID:27358180

  18. Rare diseases and intellectual disability: assessment of quality of life of children and adolescents

    Directory of Open Access Journals (Sweden)

    Erica GONZÁLEZ MARTÍN

    2017-02-01

    Full Text Available Antecedents. The main objective of this study was to evaluate the quality of life in children and young people with rare diseases and intellectual disability, as well as to determine the incidence of certain predictors (i. e., gender, age, level of intellectual disability, type of school, type of illness and autonomous community in the criterion variable. Method. The KidsLife Scale was applied, a questionnaire based on the eight domain model of quality of life by Schalock and Verdugo. The sample comprised 103 participants with rare diseases and intellectual disability, aged between 3 and 21, who received supports in any organization providing educational, social, or health services. Results. The best scores were found in physical wellbeing, while the lowest were in social inclusion. The level of intellectual disability and support needs resulted in significant differences for the total score of the scale. Analyses by domains showed differences by gender, intellectual disability level, and type of schooling. Conclusions. The results argue for designing practices aimed to improve quality of life-related personal outcomes with regard to self-determination, inclusion, and interpersonal relationships.

  19. Health behaviours and mental health status of parents with intellectual disabilities: cross sectional study.

    Science.gov (United States)

    Emerson, E; Brigham, P

    2013-12-01

    The authors sought to: (1) estimate the prevalence of health behaviours, mental health and exposure to social determinants of poorer health among parents with and without intellectual disability; and (2) determine the extent to which between-group differences in health behaviours/status may be attributable to differential exposure to social determinants of poorer health. Cross sectional survey. Secondary analysis of confidentialized needs analysis data collected in three Primary Care Trusts in England on 46,023 households with young children. Households containing a parent with intellectual disabilities are at increased risk of: (1) poorer parental mental health, parental drug and alcohol abuse and smoking; (2) exposure to a range of environmental adversities. Controlling for the latter eliminated the increased risk of poorer health for single parent households headed by a person with intellectual disabilities. For two parent headed households, risk of poorer parental mental health remained elevated. The poorer health of parents with intellectual disability may be accounted for by their markedly greater risk of exposure to common social determinants of poorer health rather than being directly attributable to their intellectual disability. Copyright © 2013 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.

  20. Digital mental health and intellectual disabilities: state of the evidence and future directions.

    Science.gov (United States)

    Sheehan, Rory; Hassiotis, Angela

    2017-11-01

    The use of digital technologies in the management of mental illness, and more generally in the promotion of well-being and mental health, has received much recent attention and is a focus of current health policy. We conducted a narrative review to explore the opportunities and risks of digital technologies in mental healthcare specifically for people with intellectual disability, a sometimes marginalised and socially excluded group. The scope of digital mental health is vast and the promise of cheaper and more effective interventions delivered digitally is attractive. People with intellectual disability experience high rates of mental illness and could benefit from the development of novel therapies, yet seem to have been relatively neglected in the discourse around digital mental health and are often excluded from the development and implementation of new interventions. People with intellectual disability encounter several barriers to fully embracing digital technology, which may be overcome with appropriate support and adaptations. A small, but growing, literature attests to the value of incorporating digital technologies into the lives of people with intellectual disability, not only for promoting health but also for enhancing educational, vocational and leisure opportunities. Clearly further evidence is needed to establish the safety and clinical efficacy of digital mental health interventions for people with and without intellectual disability. A digital inclusion strategy that explicitly addresses the needs of people with intellectual disability would ensure that all can share the benefits of the digital world. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  1. Neonatal hypocalcemia, neonatal seizures, and intellectual disability in 22q11.2 deletion syndrome

    Science.gov (United States)

    Cheung, Evelyn Ning Man; George, Susan R.; Andrade, Danielle M.; Chow, Eva W. C.; Silversides, Candice K.; Bassett, Anne S.

    2015-01-01

    Purpose Hypocalcemia is a common endocrinological condition in 22q11.2 deletion syndrome. Neonatal hypocalcemia may affect neurodevelopment. We hypothesized that neonatal hypocalcemia would be associated with rare, more severe forms of intellectual disability in 22q11.2 deletion syndrome. Methods We used a logistic regression model to investigate potential predictors of intellectual disability severity, including neonatal hypocalcemia, neonatal seizures, and complex congenital heart disease, e.g., interrupted aortic arch, in 149 adults with 22q11.2 deletion syndrome. Ten subjects had moderate-to-severe intellectual disability. Results The model was highly significant (P < 0.0001), showing neonatal seizures (P = 0.0018) and neonatal hypocalcemia (P = 0.047) to be significant predictors of a more severe level of intellectual disability. Neonatal seizures were significantly associated with neonatal hypocalcemia in the entire sample (P < 0.0001), regardless of intellectual level. There was no evidence for the association of moderate- to-severe intellectual disability with other factors such as major structural brain malformations in this sample. Conclusion The results suggest that neonatal seizures may increase the risk for more severe intellectual deficits in 22q11.2 deletion syndrome, likely mediated by neonatal hypocalcemia. Neonatal hypocalcemia often remains unrecognized until the postseizure period, when damage to neurons may already have occurred. These findings support the importance of early recognition and treatment of neonatal hypocalcemia and potentially neonatal screening for 22q11.2 deletions. PMID:23765047

  2. Inclusive Education for Students with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Janaki Balakrishnan

    2012-08-01

    Full Text Available This paper traces briefly the evolution of Inclusive Education for students with special education needs (SEN and discusses some significant challenges in its implementation. While the aim of Inclusive Education is to include all children with SEN in mainstream schools, there are many challenges that have to be overcome for their education to be meaningful. This paper focuses primarily on the inclusion of students with intellectual disability, since they are likely to be the largest number with special education needs in ‘inclusive’ schools. It offers the outline of a curriculum that may be derived from the mainstream one in use, and suggests a model that emphasises the replacement of age / grade placement, as is the present practice, with experience and maturity underpinning learning in persons with intellectual disability. The proposed model needs, of course, to be field-tested.doi 10.5463/DCID.v23i2.111

  3. Movement side effects of antipsychotic drugs in adults with and without intellectual disability: UK population-based cohort study.

    Science.gov (United States)

    Sheehan, Rory; Horsfall, Laura; Strydom, André; Osborn, David; Walters, Kate; Hassiotis, Angela

    2017-08-03

    To measure the incidence of movement side effects of antipsychotic drugs in adults with intellectual disability and compare rates with adults without intellectual disability. Cohort study using data from The Health Improvement Network. UK primary care. Adults with intellectual disability prescribed antipsychotic drugs matched to a control group of adults without intellectual disability prescribed antipsychotic drugs. New records of movement side effect including acute dystonias, akathisia, parkinsonism, tardive dyskinaesia and neuroleptic malignant syndrome. 9013 adults with intellectual disability and a control cohort of 34 242 adults without intellectual disability together contributed 148 709 person-years data. The overall incidence of recorded movement side effects was 275 per 10 000 person-years (95% CI 256 to 296) in the intellectual disability group and 248 per 10 000 person-years (95% CI 237 to 260) in the control group. The incidence of any recorded movement side effect was significantly greater in people with intellectual disability compared with those without (incidence rate ratio 1.30, 95% CI 1.18 to 1.42, pmovement side effects between the groups were not due to differences in the proportions prescribed first and second-generation antipsychotic drugs. This study provides evidence to substantiate the long-held assumption that people with intellectual disability are more susceptible to movement side effects of antipsychotic drugs. Assessment for movement side effects should be integral to antipsychotic drug monitoring in people with intellectual disability. Regular medication review is essential to ensure optimal prescribing in this group. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  4. Risk factors related to antisocial behavior in teenagers with intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Pavel A. Kislyakov

    2017-06-01

    Full Text Available Background. Throughout the ontogenic development period and life journey, everyone faces numerous threats and challenges. Certain of these challenges are beyond the individual’s control and are caused by social and environmental factors, but others, conversely, are provoked by the individual’s own lifestyle and mental and/or physical health condition. This paper considers how the social adaptation of children with intellectual developmental disorders affects the development of various forms of socially dangerous behavior. Objective. The primary goal of the study described in the article is to identify and analyze the potential risk factors related to antisocial behavior among teenagers with intellectual disabilities (mental retardation based on a survey of teachers in special (correctional schools. The methodological basis of our research uses the provisions of Lev Vygotsky’s theory of socialization among children with intellectual disabilities. This article shows the importance of implementing Lev Vygotsky’s doctrine of correction and compensation of disturbed psychological, emotional and social development of schoolchildren with intellectual disabilities. Design. To achieve this purpose, the following methods were used: interviews, questionnaires, and factor analysis. In the first stage of the study, interviews were conducted with teachers working in special (correctional schools (teachers, child and youth counselors, school psychologists, developmental pediatricians — of 108 teachers from 10 schools. Analysis of the interviews revealed a list of risk factors related to antisocial behavior among teenagers with intellectual disabilities (only 35 points. The collected data formed the basis for a questionnaire, “Social Safety for Children with Intellectual Disabilities”. In the second stage, 83 teachers working in the special (correctional schools were surveyed. The survey was completed by teachers of children (12-13 years old who

  5. IQ is an independent predictor of glycated haemoglobin level in young and middle-aged adults with intellectual disability.

    Science.gov (United States)

    Yano, T; Miki, T; Itoh, T; Ohnishi, H; Asari, M; Chihiro, S; Yamamoto, A; Aotsuka, K; Kawakami, N; Ichikawa, J; Hirota, Y; Miura, T

    2015-01-01

    Here we examined whether intellectual disability is independently associated with hyperglycaemia. We recruited 233 consecutive young and middle-aged adults with intellectual disability. After exclusion of subjects on medication for metabolic diseases or with severe intellectual disability (IQ IQ into a group with moderate intellectual disability (35 ≤ IQ ≤ 50), a mild intellectual disability group (51 ≤ IQ ≤ 70) and a borderline group (IQ > 70). HbA1c level was higher in subjects with moderate intellectual disability (42 ± 9 mmol/mol; 6.0 ± 0.8%) than those in the borderline group (36 ± 4 mmol/mol; 5.5 ± 0.3%) and mild intellectual disability group (37 ± 5 mmol/mol; 5.5 ± 0.5%) groups. HbA1c level was correlated with age, BMI, blood pressure, serum triglycerides and IQ in simple linear regression analysis. Multiple regression analysis indicated that IQ, age, BMI and diastolic blood pressure were independent explanatory factors of HbA1c level. An unfavourable effect of intellectual disability on lifestyle and untoward effect of hyperglycaemia on cognitive function may underlie the association of low IQ with hyperglycaemia. © 2014 The Authors. Diabetic Medicine © 2014 Diabetes UK.

  6. Intellectual Disabilities and Child Psychiatry: Looking to the Future

    Science.gov (United States)

    Hodapp, Robert M.; Dykens, Elisabeth M.

    2009-01-01

    We begin this article by examining the role of intellectual disabilities within child psychiatry, highlighting the relatively steady role of disabilities and the recent movement to examine behavior in specific genetic syndromes. We next propose five questions for future work. Questions relate to (1) specifying the nature of gene-brain-behavior…

  7. Exogenous Melatonin for Sleep Problems in Individuals with Intellectual Disability: A Meta-Analysis

    Science.gov (United States)

    Braam, Wiebe; Smits, Marcel G.; Didden, Robert; Korzilius, Hubert; van Geijlswijk, Ingeborg M.; Curfs, Leopold M. G.

    2009-01-01

    Recent meta-analyses on melatonin has raised doubts as to whether melatonin is effective in treating sleep problems in people without intellectual disabilities. This is in contrast to results of several trials on melatonin in treating sleep problems in individuals with intellectual disabilities. To investigate the efficacy of melatonin in treating…

  8. Screening for Intellectual Disability Using High-Resolution CMA Technology in a Retrospective Cohort from Central Brazil

    Science.gov (United States)

    Pereira, Rodrigo Roncato; Pinto, Irene Plaza; Minasi, Lysa Bernardes; de Melo, Aldaires Vieira; da Cruz e Cunha, Damiana Mirian; Cruz, Alex Silva; Ribeiro, Cristiano Luiz; da Silva, Cláudio Carlos; de Melo e Silva, Daniela; da Cruz, Aparecido Divino

    2014-01-01

    Intellectual disability is a complex, variable, and heterogeneous disorder, representing a disabling condition diagnosed worldwide, and the etiologies are multiple and highly heterogeneous. Microscopic chromosomal abnormalities and well-characterized genetic conditions are the most common causes of intellectual disability. Chromosomal Microarray Analysis analyses have made it possible to identify putatively pathogenic copy number variation that could explain the molecular etiology of intellectual disability. The aim of the current study was to identify possible submicroscopic genomic alterations using a high-density chromosomal microarray in a retrospective cohort of patients with otherwise undiagnosable intellectual disabilities referred by doctors from the public health system in Central Brazil. The CytoScan HD technology was used to detect changes in the genome copy number variation of patients who had intellectual disability and a normal karyotype. The analysis detected 18 CNVs in 60% of patients. Pathogenic CNVs represented about 22%, so it was possible to propose the etiology of intellectual disability for these patients. Likely pathogenic and unknown clinical significance CNVs represented 28% and 50%, respectively. Inherited and de novo CNVs were equally distributed. We report the nature of CNVs in patients from Central Brazil, representing a population not yet screened by microarray technologies. PMID:25061755

  9. The relationship between physical ill-health and mental ill-health in adults with intellectual disabilities.

    Science.gov (United States)

    Dunham, A; Kinnear, D; Allan, L; Smiley, E; Cooper, S-A

    2018-05-01

    People with intellectual disabilities face a much greater burden and earlier onset of physical and mental ill-health than the general adult population. Physical-mental comorbidity has been shown to result in poorer outcomes in the general population, but little is known about this relationship in adults with intellectual disabilities. To identify whether physical ill-health is associated with mental ill-health in adults with intellectual disabilities and whether the extent of physical multi-morbidity can predict the likelihood of mental ill-health. To identify any associations between types of physical ill-health and mental ill-health. A total of 1023 adults with intellectual disabilities underwent comprehensive health assessments. Binary logistic regressions were undertaken to establish any association between the independent variables: total number of physical health conditions, physical conditions by International Classification of Disease-10 chapter and specific physical health conditions; and the dependent variables: problem behaviours, mental disorders of any type. All regressions were adjusted for age, gender, level of intellectual disabilities, living arrangements, neighbourhood deprivation and Down syndrome. The extent of physical multi-morbidity was not associated with mental ill-health in adults with intellectual disabilities as only 0.8% of the sample had no physical conditions. Endocrine disease increased the risk of problem behaviours [odds ratio (OR): 1.22, 95% confidence interval (CI): 1.02-1.47], respiratory disease reduced the risk of problem behaviours (OR: 0.73, 95% CI: 0.54-0.99) and mental ill-health of any type (OR: 0.73, 95% CI: 0.58-0.92), and musculoskeletal disease reduced the risk of mental ill-health of any type (OR: 0.84, 95% CI: 0.73-0.98). Ischaemic heart disease increased the risk of problem behaviours approximately threefold (OR: 3.29, 95% CI: 1.02-10.60). The extent of physical multi-morbidity in the population with intellectual

  10. The Development of Research Skills in Young Adults with Intellectual Disability in Participatory Research

    Science.gov (United States)

    Morgan, Michelle F.; Moni, Karen B.; Cuskelly, Monica

    2015-01-01

    There is limited information about specific research constructs developed by adults with intellectual disability in undertaking research despite increasing involvement in research "with" rather than "on" these individuals. Participatory research was used with three young adults with intellectual disability to collaboratively…

  11. Physical Punishment, Mental Health and Sense of Coherence Among Parents of Children with Intellectual Disability in Japan.

    Science.gov (United States)

    Kimura, Miyako; Yamazaki, Yoshihiko

    2016-09-01

    Although sense of coherence (SOC) moderates parental stress, the relationship between SOC, parental mental health and physical punishment of children with intellectual disabilities remains uncertain. The present authors describe parental physical punishment towards children with intellectual disabilities and investigate its related demographic characteristics, SOC and parental mental health. With the cooperation of Tokyo's 10 special needs schools, the present authors obtained 648 questionnaire responses from parents of children with intellectual disabilities. Of the parents, 69.7% reported having physically punished their children with intellectual disabilities. This was positively associated with parents' younger age, poorer mental health, lower SOC, children's younger age, birth order (firstborns) and disability type (autism/pervasive developmental disorder). This is the first study supporting the relationship between SOC, mental health and physical punishment use among parents of children with intellectual disabilities. It may assist the development of strategies to prevent physical abuse of children with disabilities. © 2015 John Wiley & Sons Ltd.

  12. A guide to psychopharmacological treatment of patients with intellectual disability in psychiatry.

    Science.gov (United States)

    Molina-Ruiz, Rosa M; Martín-Carballeda, Julia; Asensio-Moreno, Inmaculada; Montañés-Rada, Francisco

    2017-03-01

    Background Subjects with intellectual disability are at increased risk of having comorbid psychiatric disorders and worse response to psychotherapeutic and psychopharmacological treatment interventions. On the other hand, available data on best treatment approach in this population are scarce and lack scientific evidence due to methodological limitations. The present study aims to perform a systematic review of the literature to facilitate the use of psychotropic drugs in clinical practice and better establish future research targets in this field. Objectives To review the available psychopharmacological strategies for patients with intellectual disabilities, psychiatric disorders, and behavioural disturbances. Serve as a quick guide for clinicians working in the field of intellectual disability. Methods We conducted a selective evidence-based review of the literature using Pubmed and EMBASE databases and selected most recent and relevant papers for this review. Results There are several available psychotropic drugs for the treatment of patients with intellectual disability and comorbid psychiatric disorders, although scientific evidence is limited. Treatment should be individualized according to risk-benefit balance. Discussion Further studies are needed and new available drugs should be considered to gain knowledge in effectiveness of different therapeutic approaches available in this population.

  13. Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability.

    Science.gov (United States)

    McDonald, Katherine E; Conroy, Nicole E; Kim, Carolyn I; LoBraico, Emily J; Prather, Ellis M; Olick, Robert S

    2016-12-01

    Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public's views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.

  14. Psychiatric morbidity in prisoners with intellectual disabilities: analysis of prison survey data for England and Wales.

    Science.gov (United States)

    Hassiotis, Angela; Gazizova, Dina; Akinlonu, Leah; Bebbington, Paul; Meltzer, Howard; Strydom, Andre

    2011-08-01

    A substantial number of prisoners have intellectual disabilities. We analysed data on a sample drawn from all prisons in England and Wales. Intellectual disability was defined as Quick Test scores equivalent to an IQ of ≤65. We found a significantly higher prevalence of probable psychosis, attempted suicide and cannabis use in prisoners with intellectual disabilities. Presence of intellectual disability was twice as likely to be associated with probable psychosis but the relationship was fully mediated by self-rated health status. It is important to identify this group as early as possible in order to provide timely interventions to cope in adverse environments and manage substance misuse.

  15. Perceptions of the Judiciary and Intellectual Disability.

    Science.gov (United States)

    Cockram, Judith; And Others

    1993-01-01

    Seventeen Supreme Court Judges, District Court Judges, and Magistrates in Western Australia were surveyed to examine perceptions concerning overrepresentation of individuals with intellectual disability in the criminal justice system. The judiciary felt these individuals had several characteristics that would disadvantage them in contacts with the…

  16. Residential Transitions among Adults with Intellectual Disability across 20 Years

    Science.gov (United States)

    Woodman, Ashley C.; Mailick, Marsha R.; Anderson, Kristy A.; Esbensen, Anna J.

    2014-01-01

    The present study addresses critical gaps in the literature by examining residential transitions among 303 adults with intellectual disability over 10 years (Part 1) and 75 adults with Down syndrome over 20 years (Part 2). All adults lived at home at the start of the study, but many moved to a variety of settings. Several characteristics of the adults with intellectual disability differed across settings, most notably adaptive behavior and the number of residential transitions, while characteristics such as age, type of disability, and behavior problems were less predictive of residential placements. The number of moves over the course of the study varied widely, with critical links to earlier family dynamics, social relationships, and health and adaptive behavior. PMID:25354121

  17. Language disorder with mild intellectual disability in a child affected by a novel mutation of SLC6A8 gene.

    Science.gov (United States)

    Battini, R; Chilosi, A M; Casarano, M; Moro, F; Comparini, A; Alessandrì, M G; Leuzzi, V; Tosetti, M; Cioni, G

    2011-02-01

    We describe the clinical and molecular features of a child harboring a novel mutation in SLC6A8 gene in association with a milder phenotype than other creatine transporter (CT1) deficient patients (OMIM 300352) [1-7]. The mutation c.757 G>C p.G253R in exon 4 of SLC6A8 was hemizygous in the child, aged 6 years and 6 months, who showed mild intellectual disability with severe speech and language delay. His carrier mother had borderline intellectual functioning. Although the neurochemical and biochemical parameters were fully consistent with those reported in the literature for subjects with CT1 deficit, in our patient within a general cognitive disability, a discrepancy between nonverbal and verbal skills was observed, confirming the peculiar vulnerability of language development under brain Cr depletion. Copyright © 2010 Elsevier Inc. All rights reserved.

  18. Genetics Home Reference: SYNGAP1-related intellectual disability

    Science.gov (United States)

    ... intellectual disability develops epilepsy, and about half have autism spectrum disorder . Related Information What does it mean if a disorder seems to run in my family? What is the prognosis of a genetic condition? ...

  19. Genomic imbalance in subjects with idiopathic intellectual disability ...

    Indian Academy of Sciences (India)

    Department of Human Genetics, Sri Ramachandra University, Chennai 600 116, India. [Mohan S., Venkatesan ... Intellectual disability (ID) is a complex disorder with hetero- geneous aetiology. .... The ratios are tabulated on the right. Table 2.

  20. Out of sight, out of mind? The inclusion and identification of people with intellectual disability in public health research.

    Science.gov (United States)

    Brooker, Katie; van Dooren, Kate; Tseng, Chih-Han; McPherson, Lyn; Lennox, Nick; Ware, Robert

    2015-07-01

    Adults with intellectual disability experience substantial health inequities. Public health research aiming to improve the lives of this population group is needed. We sought to investigate the extent to which a sample of international public health research includes and identifies people with intellectual disability. In this systematic review, we examined a select number of public health journals to determine (1) how often people with intellectual disability are explicitly included in randomised controlled trials (RCTs) and cohort studies and (2) how the presence of intellectual disability is identified and reported. Among eligible articles in these selected public health journals, it was found that cohort studies passively exclude people with intellectual disability, while RCTs actively exclude this population. Most general population articles that explicitly identified people with intellectual disability did so through self-report or proxy report and databases. A more extensive and adequate evidence base relating to the health of this overlooked population group is needed. A useful first step would be for researchers specialising in intellectual disability to identify how we can best assist mainstream researchers to include and identify people with intellectual disability in their population-level studies. © Royal Society for Public Health 2014.

  1. Early Detection of Dementia in People with an Intellectual Disability--A German Pilot Study

    Science.gov (United States)

    Kuske, Bettina; Wolff, Christian; Gövert, Uwe; Müller, Sandra Verena

    2017-01-01

    Background: This study investigated the application of a newly developed neuropsychological assessment, the Wolfenbütteler Dementia Test for Individuals with Intellectual Disabilities (WDTIM) in combination with the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID). Methods: The instruments were evaluated in…

  2. Evaluation of a social network intervention for people with mild to borderline intellectual disabilities

    NARCIS (Netherlands)

    van Asselt-Goverts, A.E.; Embregts, P.J.C.M; Hendriks, A.H.C.

    2018-01-01

    Background: Little is known about the effectiveness of interventions aimed at enhancing the social networks of people with intellectual disabilities. This study explores the results of such an intervention. How did the clients with mild to borderline intellectual disabilities and their support

  3. Are different soil metals near the homes of pregnant women associated with mild and severe intellectual disability in children?

    Science.gov (United States)

    MCDERMOTT, SUZANNE; BAO, WEICHAO; TONG, XIN; CAI, BO; LAWSON, ANDREW; AELION, CMARJORIE

    2014-01-01

    AIM We explored the association of relatively low concentrations of metals in the soil proximal to maternal residence during pregnancy, with intellectual disability. We hypothesized different metals would be associated with mild versus severe intellectual disability. METHOD We used a mixed methods design, starting with a retrospective cohort from 1996–2002, of 10 051 pregnant mothers, soil sampling in the areas where these mothers resided during pregnancy, and follow-up of their children to determine if there was an intellectual disability outcome. We tested the soil and then predicted the soil concentration at the maternal homes, and modeled the association with the severity of the child’s intellectual disability. RESULTS We found a significant positive association between mild intellectual disability and soil mercury (p=0.007). For severe intellectual disability, there was a significant positive association with the soil arsenic and lead (p=0.025). INTERPRETATION This is the first report of the differential impact of metals in soil and severity of intellectual disability in children. Soil mercury concentration in the area the mother lived during pregnancy is associated with significantly increased odds of mild intellectual disability; a combination of arsenic and lead is associated with significantly increased odds of severe intellectual disability. These associations are present when controlling for maternal, child, and neighborhood characteristics. PMID:24750016

  4. The Intersection of Intellectual Disability and Dementia: Report of The International Summit on Intellectual Disability and Dementia.

    Science.gov (United States)

    Watchman, Karen; Janicki, Matthew P

    2017-11-02

    An International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland (October 13-14, 2016), drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability (ID) affected by dementia. A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas: (a) human rights and personal resources (applications of the Convention for Rights of People with Disabilities and human rights to societal inclusion, and perspectives of persons with ID), (b) individualized services and clinical supports (advancing and advanced dementia, post-diagnostic supports, community supports and services, dementia-capable care practice, and end-of-life care practices), and (c) advocacy, public impact, family caregiver issues (nomenclature/terminology, inclusion of persons with ID in national plans, and family caregiver issues). Outcomes included recommendations incorporated into a series of publications and topical summary bulletins designed to be international resources, practice guidelines, and the impetus for planning and advocacy with, and on behalf of, people with ID affected by dementia, as well as their families. The general themes of the conceptual areas are discussed and the main recommendations are associated with three primary concerns. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  5. Self-concept, self-esteem and psychopathological symptoms in persons with intellectual disability.

    Science.gov (United States)

    Garaigordobil, Maite; Pérez, José Ignacio

    2007-05-01

    The purpose of this study is two-fold: (a) to analyze self-concept, self-esteem, and psychopathological symptoms in individuals with and without intellectual disability; and (b) to explore whether there were gender differences in these same variables in both groups. The sample is made up of 170 participants aged 19 to 40, 128 without disability and 42 with intellectual disability. The methodology is descriptive. To measure the variables, three assessment instruments were applied: the "Listado de adjetivos para la evaluaci6n del autoconcepto en adolescentes y adultos" (LAEA; Garaigordobil, in press), the Rosenberg Self-Esteem Scale (RSE; Rosenberg, 1965), and the Revised Symptom Checklist-90 (SCL-90; Derogatis, 1983). The ANOVA showed that participants with intellectual disability scored significantly lower in self-concept and self-esteem, and higher in all the psychopathological symptoms except for somatization. The ANOVA did not reveal significant gender differences in any variables in either of the two groups.

  6. Intellectual disability, oncogenes and tumour suppressor genes: the ...

    Indian Academy of Sciences (India)

    Identifying pathogenic copy number variations (CNV) involved in genomic disorders ... pathogenicity in the diagnosis of patients with intellectual disability, the ... tein has an essential role in the developing nervous system for the correct timing ...

  7. Legal Rights & Intellectual Disability: A Short Guide.

    Science.gov (United States)

    Hall, Julia, Ed.; And Others

    The book examines actions that may be taken to redress wrongs illegally perpetrated against people with intellectual disabilities in New South Wales, Australia. Ten topic areas are addressed (sample subtopics in parentheses): protecting rights (complaints to government departments, use of the ombudsman); discrimination (legal aid); personal…

  8. How Do People with Intellectual Disability Describe the Experience of Falling in Love?

    Science.gov (United States)

    Mattila, Jenni; Uusiautti, Satu; Määttä, Kaarina

    2017-01-01

    The phenomenon of falling in love among people with intellectual disability has not received much attention in research. In this study, seven Finnish young adults (5 women and 2 men) with mild intellectual disability (ID) were asked about their experiences of falling in love. They were interviewed with a qualitative themed interview method. The…

  9. Effectiveness of Mobile Skill Teaching Software for Parents of Individuals with Intellectual Disability

    Science.gov (United States)

    Cankaya, Serkan; Kuzu, Abdullah

    2018-01-01

    Mobile skill teaching software has been developed for the parents of the children with intellectual disability to be used in teaching daily life skills. The purpose of this research is to investigate the effectiveness of the mobile skill teaching software developed for the use of the parents of the children with intellectual disability. In…

  10. Beyond the Feeble Mind: Foregrounding the Personhood of Inmates with Significant Intellectual Disabilities in the Era of Institutionalization

    Directory of Open Access Journals (Sweden)

    Holly Allen

    2016-05-01

    Full Text Available This essay explores the experiences of persons with significant intellectual disabilities at the Vermont State School for Feebleminded Children (later Brandon Training School in the period 1915-1960.  We discuss the limits of existing histories of intellectual disability in accounting for the distinct experiences of significantly intellectually disabled people. This essay works to correct the tendency to define the nominal intellectual disability of "morons" and "borderline" cases—both in the past and in disability historiography of the past—against the abject, embodied difference of the "low-grade idiot" or "imbecile."  The history we offer has implications for the present-day disability rights movement.

  11. Autism and Intellectual Disability-Associated KIRREL3 Interacts with Neuronal Proteins MAP1B and MYO16 with Potential Roles in Neurodevelopment.

    Directory of Open Access Journals (Sweden)

    Ying F Liu

    Full Text Available Cell-adhesion molecules of the immunoglobulin superfamily play critical roles in brain development, as well as in maintaining synaptic plasticity, the dysfunction of which is known to cause cognitive impairment. Recently dysfunction of KIRREL3, a synaptic molecule of the immunoglobulin superfamily, has been implicated in several neurodevelopmental conditions including intellectual disability, autism spectrum disorder, and in the neurocognitive delay associated with Jacobsen syndrome. However, the molecular mechanisms of its physiological actions remain largely unknown. Using a yeast two-hybrid screen, we found that the KIRREL3 extracellular domain interacts with brain expressed proteins MAP1B and MYO16 and its intracellular domain can potentially interact with ATP1B1, UFC1, and SHMT2. The interactions were confirmed by co-immunoprecipitation and colocalization analyses of proteins expressed in human embryonic kidney cells, mouse neuronal cells, and rat primary neuronal cells. Furthermore, we show KIRREL3 colocalization with the marker for the Golgi apparatus and synaptic vesicles. Previously, we have shown that KIRREL3 interacts with the X-linked intellectual disability associated synaptic scaffolding protein CASK through its cytoplasmic domain. In addition, we found a genomic deletion encompassing MAP1B in one patient with intellectual disability, microcephaly and seizures and deletions encompassing MYO16 in two unrelated patients with intellectual disability, autism and microcephaly. MAP1B has been previously implicated in synaptogenesis and is involved in the development of the actin-based membrane skeleton. MYO16 is expressed in hippocampal neurons and also indirectly affects actin cytoskeleton through its interaction with WAVE1 complex. We speculate KIRREL3 interacting proteins are potential candidates for intellectual disability and autism spectrum disorder. Moreover, our findings provide further insight into understanding the molecular

  12. Medical Students' Attitudes towards Health Care for People with Intellectual Disabilities: A Qualitative Study

    Science.gov (United States)

    Ryan, Travis A.; Scior, Katrina

    2016-01-01

    Background: People with intellectual disabilities experience serious health inequalities (e.g. they die younger than people without intellectual disabilities). Medical students' attitudes towards health care for this population warrant empirical attention because, as tomorrow's doctors, they will affect the health inequalities that people with…

  13. Our experience with the aetiological diagnosis of global developmental delay and intellectual disability: 2006-2010.

    Science.gov (United States)

    López-Pisón, J; García-Jiménez, M C; Monge-Galindo, L; Lafuente-Hidalgo, M; Pérez-Delgado, R; García-Oguiza, A; Peña-Segura, J L

    2014-09-01

    Global developmental delay (GDD) and intellectual disability (ID) are common reasons for consultation in paediatric neurology. Results from aetiological evaluations of children with GDD/ID vary greatly, and consequently, there is no universal consensus regarding which studies should be performed. We review our experience with determining aetiological diagnoses for children with GDD/ID who were monitored by the paediatric neurology unit over the 5-year period between 2006 and 2010. During the study period, 995 children with GDD/ID were monitored. An aetiological diagnosis was established for 309 patients (31%), but not in 686 (69%), despite completing numerous tests. A genetic cause was identified in 142 cases (46% of the total aetiologies established), broken down as 118 cases of genetic encephalopathy and 24 of metabolic hereditary diseases. Our data seem to indicate that diagnosis is easier when GDD/ID is associated with cerebral palsy, epilepsy, infantile spasms/West syndrome, or visual deficit, but more difficult in cases of autism spectrum disorders. Genetic studies provide an increasing number of aetiological diagnoses, and they are also becoming the first step in diagnostic studies. Array CGH (microarray-based comparative genomic hybridisation) is the genetic test with the highest diagnostic yield in children with unexplained GDD/ID. The cost-effectiveness of complementary studies seems to be low if there are no clinically suspected entities. However, even in the absence of treatment, aetiological diagnosis is always important in order to provide genetic counselling and possible prenatal diagnosis, resolve family (and doctors') queries, and halt further diagnostic studies. Copyright © 2013 Sociedad Española de Neurología. Published by Elsevier Espana. All rights reserved.

  14. Participation Patterns of Preschool Children With Intellectual Developmental Disabilities.

    Science.gov (United States)

    Gilboa, Yafit; Fuchs, Reut

    2018-04-01

    We aim to examine the pattern of participation of children with intellectual developmental disabilities (IDD) or global developmental delay (GDD) in comparison with typically developing preschoolers. In addition, to identify environmental and personal factors associated with their participation, 20 children with mild to moderate GDD or IDD, and 24 age- and gender-matched controls, aged 3 to 6 years, were assessed using the Assessment of Preschool Children's Participation and the Environmental Restriction Questionnaire. Significant differences were found between the groups, both for general scales of participation and for each activity area. For the IDD/GDD group, participation was significantly negatively correlated with environmental restrictions at home. For the control group, participation was correlated with demographic variables. Typically developing children participate at a higher frequency and in a more diverse range of activities compared with children with IDD/GDD. Associations between participation and contextual factors varied depending on the child's health condition.

  15. The phenotypic spectrum of ARHGEF9 includes intellectual disability, focal epilepsy and febrile seizures.

    Science.gov (United States)

    Klein, Karl Martin; Pendziwiat, Manuela; Eilam, Anda; Gilad, Ronit; Blatt, Ilan; Rosenow, Felix; Kanaan, Moien; Helbig, Ingo; Afawi, Zaid

    2017-07-01

    Mutations or structural genomic alterations of the X-chromosomal gene ARHGEF9 have been described in male and female patients with intellectual disability. Hyperekplexia and epilepsy were observed to a variable degree, but incompletely described. Here, we expand the phenotypic spectrum of ARHGEF9 by describing a large Ethiopian-Jewish family with epilepsy and intellectual disability. The four affected male siblings, their unaffected parents and two unaffected female siblings were recruited and phenotyped. Parametric linkage analysis was performed using SNP microarrays. Variants from exome sequencing in two affected individuals were confirmed by Sanger sequencing. All affected male siblings had febrile seizures from age 2-3 years and intellectual disability. Three developed afebrile seizures between age 7-17 years. Three showed focal seizure semiology. None had hyperekplexia. A novel ARHGEF9 variant (c.967G>A, p.G323R, NM_015185.2) was hemizygous in all affected male siblings and heterozygous in the mother. This family reveals that the phenotypic spectrum of ARHGEF9 is broader than commonly assumed and includes febrile seizures and focal epilepsy with intellectual disability in the absence of hyperekplexia or other clinically distinguishing features. Our findings suggest that pathogenic variants in ARHGEF9 may be more common than previously assumed in patients with intellectual disability and mild epilepsy.

  16. Narrative ethics in nursing for persons with intellectual disabilities.

    Science.gov (United States)

    Meininger, Herman P

    2005-04-01

    Both in The Netherlands and in Britain, practices of 'life story work' have emerged in nursing for persons with intellectual disabilities. The narrative approach to care and support may at the same time be considered as an attempt to compensate for the 'disabled authorship' of many persons with intellectual disabilities and as a sign of controversy with standard practices of diagnosis and treatment that tend to neglect the personal identities of both clients and care givers, their particular historical and relational contexts and their spiritual needs. This paper argues that narrative ethics not only offers an appropriate moral framework for practices of life story work, but that these practices are a narrative ethics in action. Starting with an account of the concept of 'life story work' as it has been introduced in nursing practices in the field of intellectual disability, the paper explains its relationship with key characteristics of narrative ethics. The teleological dimension in narrative ethics and in practices of life story work sparks off a dialectic process of understanding of the client and self-understanding of the care giver. It also invites a respect for life in its openness toward the future and presupposes an openness toward other possible versions of the life narrative. The phenomenological and hermeneutic-interpretative methodologies in narrative ethics aim at a 'sudden moment of intimacy' in relationships of nurses and clients. The 'epiphany' of this essential moment of recognition, insight and engagement cannot, however, be brought about by methodology.

  17. Impact of Dementia-Derived Nonpharmacological Intervention Procedures on Cognition and Behavior in Older Adults with Intellectual Disabilities: A 3-Year Follow-Up Study

    Science.gov (United States)

    De Vreese, Luc P.; Mantesso, Ulrico; De Bastiani, Elisa; Weger, Elisabeth; Marangoni, Annachiara C.; Gomiero, Tiziano

    2012-01-01

    Dementia appears at a higher rate among some adults with intellectual disabilities (ID) and this potentially poses a greater risk of nursing home admission. Yet, to date, there is no evidence on the efficacy of general dementia-derived environment-, personnel-, and patient-oriented intervention strategies in delaying onset of dementia or in…

  18. Self-Concept of Children with Intellectual Disability in Mainstream Settings

    Science.gov (United States)

    Huck, Sally; Kemp, Coral; Carter, Mark

    2010-01-01

    Background: Positive self-concept is an important educational outcome for individuals with disability. Method: Perceived competence and acceptance of 17 children with intellectual disability, included in mainstream classes, were assessed using the Pictorial Scale of Perceived Competence and Social Acceptance for Young Children (PSPCSA) and…

  19. "It's My Life": Autonomy and People with Intellectual Disabilities

    Science.gov (United States)

    Björnsdóttir, Kristín; Stefánsdóttir, Guðrún V; Stefánsdóttir, Ástríður

    2015-01-01

    This article discusses autonomy in the lives of adults with intellectual disabilities. The article draws on inclusive research in Iceland with 25 women and 16 men and employs ideas of relational autonomy from the perspectives of the Nordic relational approach to disability. In this article, we examine autonomy in relation to private life, that is,…

  20. Enabling Access and Enhancing Comprehension of Video Content for Postsecondary Students with Intellectual Disability

    Science.gov (United States)

    Evmenova, Anya S.; Behrmann, Michael M.

    2014-01-01

    There is a great need for new innovative tools to integrate individuals with intellectual disability into educational experiences. This multiple baseline study examined the effects of various adaptations for improving factual and inferential comprehension of non-fiction videos by six postsecondary students with intellectual disability. Video…

  1. Promoting Health of People with Intellectual Disabilities: Views of Professionals Working in Group Homes

    Science.gov (United States)

    Wahlström, Lina; Bergström, Helena; Marttila, Anneli

    2014-01-01

    Deinstitutionalisation has influenced the life situation for people with intellectual disabilities, whilst the experiences of health promotion in group homes now are limited. This study aimed to explore aspects important to consider when promoting health amongst persons with intellectual disabilities in group homes, from the perspective of…

  2. Effects of Mindfulness-Based Intervention to Improve Task Performance for Children with Intellectual Disabilities

    Science.gov (United States)

    Kim, Jeongil; Kwon, Miyoung

    2018-01-01

    Background: Task performance is a critical factor for learning in individuals with intellectual disabilities. This study aimed to examine mindfulness-based intervention (MBI) to improve task performance for children with intellectual disability (ID). Methods: Three elementary school children with ID participated in the study. A multiple baseline…

  3. Impact of Physical Activity on Obesity and Lipid Profile of Adults with Intellectual Disability

    Science.gov (United States)

    Gawlik, Krystyna; Zwierzchowska, Anna; Celebanska, Diana

    2018-01-01

    Introduction: This study assessed overweight, obesity and lipid profiles in adults with intellectual disability and compared these metrics with their physical activity. Materials and Method: Basic somatic parameters, lipid profile and weekly physical activity were examined in 27 adults with moderate intellectual disability. Chi-square independence…

  4. Intellectual Disability and Parenthood

    Directory of Open Access Journals (Sweden)

    Isack Kandel

    2005-01-01

    Full Text Available Parenthood in persons with intellectual disability (ID is an issue of concern for the family, guardians, and professionals as there are many sentiments and problems involved: financial, technical, medical, legal, and above all moral. People with intellectual, developmental, or other disabilities have feelings, want relationships, and are able to have children also. The attitude of society has changed through time from the early eugenic concern with heredity and fertility, to a focus on the risk to the children due to parental neglect or abuse, to acceptance and a search for solutions to parental training and support. This change can be seen as a result of a shift from institutional care to community care and normalization. This paper reviews available research, prevalence, service issues, experience from around the world, and relates to the situation in Israel. Jewish Law has been very progressive regarding the possibility of marriage between persons with ID (in contrast to American Law where historically this right has been denied, until recently. Recent research has shown that, in the case of such a union resulting in children, although they require some supervision, family, friends, and social welfare agencies have scrutinized these families so much they are in constant fear of their child being taken away. There is little information on the number of such cases and an overall dearth of information on the effects on the children, although one recent study from the U.K. has shown a varied picture of resilience and a close, warm relationship later on with the family and especially the mother.

  5. Structured Medication Review to Improve Pharmacotherapy in People with Intellectual Disability and Behavioural Problems.

    Science.gov (United States)

    Scheifes, Arlette; Egberts, Toine C G; Stolker, Joost Jan; Nijman, Henk L I; Heerdink, Eibert R

    2016-07-01

    Polypharmacy and chronic drug use are common in people with intellectual disability and behavioural problems, although evidence of effectiveness and safety in this population is lacking. This study examined the effects of a structured medication review and aimed to improve pharmacotherapy in inpatients with intellectual disability. In a treatment facility for people with mild to borderline intellectual disability and severe behavioural problems, a structured medication review was performed. Prevalence and type of drug-related problems (DRPs) and of the recommended and executed actions were calculated. In a total of 55 patients with intellectual disability and behavioural problems, 284 medications were prescribed, in which a DRP was seen in 106 (34%). No indication/unclear indication was the most prevalent DRP (70). Almost 60% of the recommended actions were also executed. This high prevalence of DRPs is worrying. The structured medication review is a valuable instrument to optimize pharmacotherapy and to support psychiatrists in adequate prescribing of both psychotropic and somatic drugs. © 2015 John Wiley & Sons Ltd.

  6. Attributions of Stability, Control and Responsibility: How Parents of Children with Intellectual Disabilities View their Child's Problematic Behaviour and Its Causes.

    Science.gov (United States)

    Jacobs, Myrthe; Woolfson, Lisa Marks; Hunter, Simon C

    2016-01-01

    Children with intellectual disabilities have high rates of behaviour problems. This study explored parents' causal beliefs and attributions for general problematic child behaviour in children with different aetiologies of intellectual disabilities. Ten parents of children with intellectual disabilities participated in interviews about their child's problematic behaviour. Thematic analysis using NVivo revealed that parents viewed their child's problematic behaviour not only as caused by the child's intellectual disabilities but also by other causes unrelated to the intellectual disabilities, as well as by aspects of the social environmental context. Some causes were viewed as stable and uncontrollable and others as unstable and controllable. In addition, parents showed a strong sense of responsibility for child behaviour. Parents of children with intellectual disabilities do not solely interpret their child's problematic behaviour through the intellectual disabilities but incorporate the environment and causes and attributions that are not related to the intellectual disabilities, which may help to promote more effective parenting. © 2015 John Wiley & Sons Ltd.

  7. Relation between paralinguistic skills and social skills in adults with mild and moderate intellectual disability

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    Đorđević Mirjana

    2016-01-01

    Full Text Available Facial expressions and prosodic acoustic characteristics jointly present paralinguistic features of communication. By analyzing literature, we observe that respondents with intellectual disabilities manifest emphasized difficulties in detecting emotions in tasks of facial and vocal expression. However, we do not know if there are data on how paralinguistic abilities correlate with social skills in adults with intellectual disabilities. This research was conducted in order to determine the relation between the ability of paralinguistic production and paralinguistic understanding, on one side, and social skills on the other side. The sample consisted of 44 adults of both genders with mild (N=22 and moderate intellectual disabilities (N=22, aged between 20 and 50 (M=32.41, SD=9.36. The Paralinguistic scale from the battery for the assessment of communication (The Assessment Battery for Communication, Abaco, Sacco et al., 2008 was used for the assessment of paralinguistic skills, and three subscales of Vineland adaptive behavior scale - teaching form (Sparrow, Cicchetti & Balla, 2006 were used for the assessment of social skills. The results show that the achievement on subscales of Playing and leisure time positively correlated with the ability to understand emotions in communication (r = 0.486, p < 0.05 in respondents with mild intellectual disability. Achievements on the subscales Skills of adapting had a moderate and positive correlation with the ability to understand emotions in communication (r=0.522, p<0.05 in subjects with mild intellectual disability. Statistically significant correlations between the examined variables were not observed in the group of respondents with moderate intellectual disability. We can conclude that in adults with mild intellectual disability the ability to understand emotional paralinguistic elements significantly correlates with the ability to organize social activities and to adapt behavior in social interactions.

  8. Child Welfare-Involved Youth with Intellectual Disabilities: Pathways into and Placements in Foster Care

    Science.gov (United States)

    Slayter, Elspeth; Springer, Cheryl

    2011-01-01

    Existing literature suggests that youth with intellectual disabilities are at increased risk for child maltreatment. Little is known about youth with intellectual disabilities who are supervised by child welfare authorities or living in foster care. Reasons for child welfare system involvement and placement types are explored. In this…

  9. Pedagogical guidelines for educational accompaniment for grieving to adults with intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Pablo RODRÍGUEZ HERRERO

    2013-11-01

    Full Text Available It is needed a foundation and some orientations to act in loss and grief situations with adults with intellectual disabilities. In this article, through a relevant literature review, we based the educational accompaniment as a pedagogic methodology of support with three principal elements: a The conception of grief from its formative potential, b The prevention of disorders associated to grief complications, c The pedagogic intervention preferably from the tutorship or from the actuation of educators or professionals near to intellectual disabilities people. The educational accompaniment model is a proposal that can be placed on humanist models of grief since it considers both the characteristics of the grieving process and the formative possibilities of its elaboration. The article’s conclusions present some of the benefits of the educational accompaniment for adults with intellectual disabilities.

  10. Classification of intellectual disability using the Wechsler Intelligence Scale for Children: Full Scale IQ or General Abilities Index?

    Science.gov (United States)

    Koriakin, Taylor A; McCurdy, Mark D; Papazoglou, Aimilia; Pritchard, Alison E; Zabel, T Andrew; Mahone, E Mark; Jacobson, Lisa A

    2013-09-01

    We examined the implications of using the Full Scale IQ (FSIQ) versus the General Abilities Index (GAI) for determination of intellectual disability using the Wechsler Intelligence Scales for Children, fourth edition (WISC-IV). Children referred for neuropsychological assessment (543 males, 290 females; mean age 10y 5mo, SD 2y 9mo, range 6-16y) were administered the WISC-IV and the Adaptive Behavior Assessment System, second edition (ABAS-II). GAI and FSIQ were highly correlated; however, fewer children were identified as having intellectual disability using GAI (n=159) than when using FSIQ (n=196). Although the 44 children classified as having intellectual disability based upon FSIQ (but not GAI) had significantly higher adaptive functioning scores than those meeting intellectual disability criteria based upon both FSIQ and GAI, mean adaptive scores still fell within the impaired range. FSIQ and GAI were comparable in predicting impairments in adaptive functioning. Using GAI rather than FSIQ in intellectual disability diagnostic decision-making resulted in fewer individuals being diagnosed with intellectual disability; however, the mean GAI of the disqualified individuals was at the upper end of criteria for intellectual impairment (standard score 75), and these individuals remained adaptively impaired. As GAI and FSIQ were similarly predictive of overall adaptive functioning, the use of GAI for intellectual disability diagnostic decision-making may be of limited value. © 2013 Mac Keith Press.

  11. Aged and Dependency Ratios among Autism, Intellectual Disability and Other Disabilities: 10-Year Trend Analysis

    Science.gov (United States)

    Lin, Jin-Ding; Lin, Lan-Ping; Sung, Chang-Lin; Wu, Jia-Ling

    2011-01-01

    Dependency ratios are useful as general indicators of future economic and social health. The present paper focuses on the description of dependency ratios and over time change in different kind of disability which include autism, intellectual disability, vision, hearing, and limb impairments. We analyzed data mainly from the public web-access…

  12. De novo mutations of KIAA2022 in females cause intellectual disability and intractable epilepsy.

    Science.gov (United States)

    de Lange, Iris M; Helbig, Katherine L; Weckhuysen, Sarah; Møller, Rikke S; Velinov, Milen; Dolzhanskaya, Natalia; Marsh, Eric; Helbig, Ingo; Devinsky, Orrin; Tang, Sha; Mefford, Heather C; Myers, Candace T; van Paesschen, Wim; Striano, Pasquale; van Gassen, Koen; van Kempen, Marjan; de Kovel, Carolien G F; Piard, Juliette; Minassian, Berge A; Nezarati, Marjan M; Pessoa, André; Jacquette, Aurelia; Maher, Bridget; Balestrini, Simona; Sisodiya, Sanjay; Warde, Marie Therese Abi; De St Martin, Anne; Chelly, Jamel; van 't Slot, Ruben; Van Maldergem, Lionel; Brilstra, Eva H; Koeleman, Bobby P C

    2016-12-01

    Mutations in the KIAA2022 gene have been reported in male patients with X-linked intellectual disability, and related female carriers were unaffected. Here, we report 14 female patients who carry a heterozygous de novo KIAA2022 mutation and share a phenotype characterised by intellectual disability and epilepsy. Reported females were selected for genetic testing because of substantial developmental problems and/or epilepsy. X-inactivation and expression studies were performed when possible. All mutations were predicted to result in a frameshift or premature stop. 12 out of 14 patients had intractable epilepsy with myoclonic and/or absence seizures, and generalised in 11. Thirteen patients had mild to severe intellectual disability. This female phenotype partially overlaps with the reported male phenotype which consists of more severe intellectual disability, microcephaly, growth retardation, facial dysmorphisms and, less frequently, epilepsy. One female patient showed completely skewed X-inactivation, complete absence of RNA expression in blood and a phenotype similar to male patients. In the six other tested patients, X-inactivation was random, confirmed by a non-significant twofold to threefold decrease of RNA expression in blood, consistent with the expected mosaicism between cells expressing mutant or normal KIAA2022 alleles. Heterozygous loss of KIAA2022 expression is a cause of intellectual disability in females. Compared with its hemizygous male counterpart, the heterozygous female disease has less severe intellectual disability, but is more often associated with a severe and intractable myoclonic epilepsy. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  13. Focus group interviews examining the contribution of intellectual disability clinical nurse specialists in Ireland.

    Science.gov (United States)

    Doody, Owen; Slevin, Eamonn; Taggart, Laurence

    2017-10-01

    To explore the contribution of clinical nurse specialists in intellectual disability nursing in Ireland. While clinical nurse specialists exist since the 1940s, they have only been a reality in Ireland since 2001. While the role of clinical nurse specialist has developed over the years, it still however is often seen as a complex multifaceted role that causes confusion, frustration and controversy. A exploratory qualitative approach using focus groups with Irish intellectual disability clinical nurse specialists (n = 31). Five focus group interviews were conducted to gather qualitative data to gain insight into the attitudes, perceptions and opinions of the participants. Data were audio-recorded, transcribed and analysed using Burnard's (Vital Notes for Nurses: Research for Evidence-Based Practice in Healthcare, 2011, Blackwell Publishing, Oxford) framework. Ethical approval was gained from the researcher's university and access granted by the national council for the professional development of nursing/midwifery in Ireland. The study highlights that intellectual disability clinical nurse specialists contribute to and support care delivery across a range of areas including client-focused and family-centred care, staff support, organisation support, community support and supporting other agencies. Overall, the study shows the importance of intellectual disability clinical nurse specialists and their contribution across a range of services, care environments and the support they offer to clients/families/staff/multidisciplinary team members and outside agencies. Ireland is in a unique position to develop knowledge regarding specialist care for people with intellectual disability that can be shared and adapted by other healthcare professionals in other countries that do not have specialised intellectual disability nurses. © 2016 John Wiley & Sons Ltd.

  14. Life Satisfaction in Persons with Intellectual Disabilities

    Science.gov (United States)

    Lucas-Carrasco, Ramona; Salvador-Carulla, Luis

    2012-01-01

    We appraised life satisfaction using the Satisfaction with Life Scale (SWLS), and analysed its psychometric properties in persons with intellectual disability (ID). Ninety-nine persons with ID from four services in Spain participated. A battery of subjective assessments was used, including the SWLS, a Quality of Life measure (WHOQOL-BREF), and…

  15. ERP evaluation of auditory sensory memory systems in adults with intellectual disability.

    Science.gov (United States)

    Ikeda, Kazunari; Hashimoto, Souichi; Hayashi, Akiko; Kanno, Atsushi

    2009-01-01

    Auditory sensory memory stage can be functionally divided into two subsystems; transient-detector system and permanent feature-detector system (Naatanen, 1992). We assessed these systems in persons with intellectual disability by measuring event-related potentials (ERPs) N1 and mismatch negativity (MMN), which reflect the two auditory subsystems, respectively. Added to these, P3a (an ERP reflecting stage after sensory memory) was evaluated. Either synthesized vowels or simple tones were delivered during a passive oddball paradigm to adults with and without intellectual disability. ERPs were recorded from midline scalp sites (Fz, Cz, and Pz). Relative to control group, participants with the disability exhibited greater N1 latency and less MMN amplitude. The results for N1 amplitude and MMN latency were basically comparable between both groups. IQ scores in participants with the disability revealed no significant relation with N1 and MMN measures, whereas the IQ scores tended to increase significantly as P3a latency reduced. These outcomes suggest that persons with intellectual disability might own discrete malfunctions for the two detector systems in auditory sensory-memory stage. Moreover, the processes following sensory memory might be partly related to a determinant of mental development.

  16. Perceived stigma, self-esteem and social comparison of people with intellectual disability

    OpenAIRE

    Stanković Ivana; Milačić-Vidojević Ivona

    2014-01-01

    The aim of this study was to determine the relationship between self-esteem, perceived stigma and social comparison of persons with intellectual disabilities. The sample consisted of 100 persons with mild and moderate intellectual disability, aged 18 years and older, of different sexes, with or without stigmatized characteristics, who lived in an institution or in a family. We used questionnaires of Perceived stigma, Adapted Scale of Social Comparison and Adapted Rosenberg Self-Esteem Scale. ...

  17. "You can't be cold and scientific": community views on ethical issues in intellectual disability research.

    Science.gov (United States)

    McDonald, Katherine E; Schwartz, Nicole M; Gibbons, Colleen M; Olick, Robert S

    2015-04-01

    Perceptions, attitudes, and ethical concerns related to conducting research with adults with intellectual disability hinder scientific innovation to promote health. Yet we lack an understanding of community views on effective research policy and practice. To address this knowledge void, we qualitatively studied the views of adults with intellectual disability and those who provide them support regarding research participation of adults with intellectual disability. We found substantial support for their inclusion, particularly given the possibility of benefits to adults with intellectual disability, researchers, and society. We also found concerns for potential harm and differing ideas on how to promote safety. Our findings emphasize the importance of their inclusion in research, and the need for policies and practices that promote respect and safety. © The Author(s) 2015.

  18. Minor Neurological Dysfunctions (MNDs in Autistic Children without Intellectual Disability

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    Gabriele Tripi

    2018-04-01

    Full Text Available Background: Children with autism spectrum disorder (ASD require neurological evaluation to detect sensory-motor impairment. This will improve understanding of brain function in children with ASD, in terms of minor neurological dysfunctions (MNDs. Methods: We compared 32 ASD children without intellectual disability (IQ ≥ 70 with 32 healthy controls. A standardized and age-specific neurological examination according to Touwen was used to detect the presence of MNDs. Particular attention was paid to severity and type of MNDs. Results: Children with ASD had significantly higher rates of MNDs compared to controls (96.9% versus 15.6%: 81.3% had simple MNDs (p < 0.0001 and 15.6% had complex MNDs (p = 0.053. The prevalence of MNDs in the ASD group was significantly higher (p < 0.0001 than controls. With respect to specific types of MNDs, children with ASD showed a wide range of fine manipulative disability, sensory deficits and choreiform dyskinesia. We also found an excess of associated movements and anomalies in coordination and balance. Conclusions: Results replicate previous findings which found delays in sensory-motor behavior in ASD pointing towards a role for prenatal, natal and neonatal risk factors in the neurodevelopmental theory of autism.

  19. Causal beliefs about intellectual disability and schizophrenia and their relationship with awareness of the condition and social distance.

    Science.gov (United States)

    Scior, Katrina; Furnham, Adrian

    2016-09-30

    Evidence on mental illness stigma abounds yet little is known about public perceptions of intellectual disability. This study examined causal beliefs about intellectual disability and schizophrenia and how these relate to awareness of the condition and social distance. UK lay people aged 16+(N=1752), in response to vignettes depicting intellectual disability and schizophrenia, noted their interpretation of the difficulties, and rated their agreement with 22 causal and four social distance items. They were most likely to endorse environmental causes for intellectual disability, and biomedical factors, trauma and early disadvantage for schizophrenia. Accurate identification of both vignettes was associated with stronger endorsement of biomedical causes, alongside weaker endorsement of adversity, environmental and supernatural causes. Biomedical causal beliefs and social distance were negatively correlated for intellectual disability, but not for schizophrenia. Causal beliefs mediated the relationship between identification of the condition and social distance for both conditions. While all four types of causal beliefs acted as mediators for intellectual disability, for schizophrenia only supernatural causal beliefs did. Educating the public and promoting certain causal beliefs may be of benefit in tackling intellectual disability stigma, but for schizophrenia, other than tackling supernatural attributions, may be of little benefit in reducing stigma. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

  20. Stigma and restriction on the social life of families of children with intellectual disabilities in Vietnam.

    Science.gov (United States)

    Ngo, Hong; Shin, Jin Y; Nhan, Nguyen Viet; Yang, Lawrence H

    2012-07-01

    Intellectual disabilities are as prevalent in East Asian countries as in the West (0.06%-1.3%). Widespread discrimination against intellectual disabilities in Asia may initiate stigma that places unfair restrictions on the social life of these individuals and their caregivers. We utilised established stigma frameworks to assess the extent to which a child's intellectual disability contributes to the social exclusion of caregivers in Vietnam. A mixed quantitative and qualitative approach was employed to examine the experience of social life restriction among parents of children with intellectual disabilities. The child's disability level and restrictions on caregivers' social experiences were assessed among 70 mothers and fathers recruited from schools in Hue City, Vietnam. Qualitative responses describing social exclusion were also recorded. Caregivers reported elevated levels of social exclusion. As hypothesised, parents of children with greater intellectual disability experienced more restrictions on their social life (Beta = 0.79, 95% confidence interval 0.27-1.30, standard error = 0.26, p stigma, which in turn restricts key social interactions among caregivers. Psycho-educational interventions may address the social domains in which caregivers are impacted and encourage sustained help-seeking among caregivers for their children.

  1. Extracurricular activities and the development of social skills in children with intellectual and specific learning disabilities.

    Science.gov (United States)

    Brooks, B A; Floyd, F; Robins, D L; Chan, W Y

    2015-07-01

    Children with intellectual disability and specific learning disabilities often lack age-appropriate social skills, which disrupts their social functioning. Because of the limited effectiveness of classroom mainstreaming and social skills training for these children, it is important to explore alternative opportunities for social skill acquisition. Participation in social activities is positively related to children's social adjustment, but little is known about the benefits of activity participation for children with intellectual and specific learning disabilities. This study investigated the association between frequency and type of social activity participation and the social competence of 8-11-year-old children with intellectual disability (n = 40) and specific learning disabilities (n = 53), in comparison with typically developing peers (n = 24). More time involved in unstructured activities, but not structured activities, was associated with higher levels of social competence for all children. This association was strongest for children with intellectual disability, suggesting that participation in unstructured social activities was most beneficial for these children. Future research on the quality of involvement is necessary to further understand specific aspects of unstructured activities that might facilitate social development. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  2. Music for All: Including young people with intellectual disability in a university environment.

    Science.gov (United States)

    Rickson, Daphne; Warren, Penny

    2017-01-01

    We investigated a continuing education course in creative music making, initiated to promote the inclusion of young people with intellectual disability in a university setting. Despite organizers' attempts to foster diversity within the student cohort, enrolments were almost exclusively from students who had intellectual disability. Being in the university environment, and in a place of higher learning, seemed to be valued by some. However, students' main focus was on group musicking in a dedicated music room rather than interacting with the wider university community. Those who did not identify as disabled believed it was important to continue to address the barriers to wider inclusion. While acknowledging the risks around mediating the social interactions of young people with intellectual disability, we argue that future courses should include activities specifically designed to bring them to classes with typical students and to the wider activities of the university.

  3. [Aging and quality of life: challenges and opportunities for people with intellectual disabilities].

    Science.gov (United States)

    Schäper, S; Graumann, S

    2012-10-01

    In the coming years, a growing number of people with an intellectual disability will reach retirement age. In line with the change of paradigms, the leading ideas of participation, inclusion and self-determination have become the principles of the ideological and conceptual framework in social services for people with disabilities. However, in many places convincing concepts and arrangements of support for elderly people with intellectual disabilities are lacking, particularly beyond institutionalized concepts. The research project "Lebensqualität inklusiv(e)" (quality of life included) tries to bridge this gap. On the base of an estimation of the demographic development for this group of people, models of best practice have been documented and evaluated focusing on living conditions and the special requirements for elderly people with intellectual disabilities in order to gather ideas for the development of arrangements of support. The results show that an interdisciplinary cooperation is indispensable.

  4. Agreement in Quality of Life Assessment between Adolescents with Intellectual Disability and Their Parents

    Science.gov (United States)

    Golubovic, Spela; Skrbic, Renata

    2013-01-01

    Intellectual disability affects different aspects of functioning and quality of life, as well as the ability to independently assess the quality of life itself. The paper examines the agreement in the quality of life assessments made by adolescents with intellectual disability and their parents compared with assessments made by adolescents without…

  5. Evaluation of a Social Network Intervention for People with Mild to Borderline Intellectual Disabilities

    Science.gov (United States)

    van Asselt-Goverts, A. E.; Embregts, P. J. C. M.; Hendriks, A. H. C.

    2018-01-01

    Background: Little is known about the effectiveness of interventions aimed at enhancing the social networks of people with intellectual disabilities. This study explores the results of such an intervention. How did the clients with mild to borderline intellectual disabilities and their support workers evaluate the intervention? What did they learn…

  6. “You Can’t be Cold and Scientific”: Community Views on Ethical Issues in Intellectual Disability Research

    OpenAIRE

    McDonald, Katherine E.; Schwartz, Nicole M.; Gibbons, Colleen M.; Olick, Robert S.

    2015-01-01

    Perceptions, attitudes, and ethical concerns related to conducting research with adults with intellectual disability hinder scientific innovation to promote health. Yet we lack an understanding of community views on effective research policy and practice. To address this knowledge void, we qualitatively studied the views of adults with intellectual disability and those who provide them support regarding research participation of adults with intellectual disability. We found substantial suppor...

  7. Comparative Policy Brief: Status of Intellectual Disabilities in the Republic of Haiti

    Science.gov (United States)

    Jacobson, Erik

    2008-01-01

    An estimated 800,000 persons have disabilities in Haiti, but there are no data that refer specifically to those with intellectual disabilities. Traditional fears and stigma about disability are widespread. While the constitution supports the idea that people with disabilities should have autonomy and education, there are no laws to mandate…

  8. Self-efficacy perception in high school students with mild intellectual disability in practical training

    Directory of Open Access Journals (Sweden)

    Milanović-Dobrota Biljana

    2013-01-01

    Full Text Available The main goal of this paper is to determine how students with mild intellectual disability perceive self-efficacy in practical training, with regard to the intellectual level, gender, work field and professional level for which they are being trained. The sample consists of 120 students with mild intellectual disability, of both genders, undergoing vocational training in five work fields for the second and third level professions. Adapted Self-Efficacy to Regulate Training Scale (Bandura, 2006 was used to assess the influence of negative internal and external factors on the students' efficacy at performing tasks in practical training. It was determined that there is a statistically significant difference among the examinees of the same disability category, but different level of intellectual functioning. Girls with lower and higher levels of intellectual functioning were found to perceive self-efficacy in practical training with lower level of confidence than boys with the same levels of intellectual functioning. The examinees undergoing the third level vocational training are more confident in their abilities to coordinate knowledge and skills in training regardless of different distracting factors. There we no statistically significant differences determined with regard to the work field. Assessing self-efficacy in training can direct the development of self-efficacy, help individuals gain a sense of control over their career development, and for professionals involved in finding jobs for persons with intellectual disability provide a predictive success/failure role at work.

  9. Internet and people with intellectual disability: an approach to caregivers’ concerns, prevention strategies and training needs

    Directory of Open Access Journals (Sweden)

    Esther Chiner

    2017-07-01

    Full Text Available The aim of this study was to explore caregivers’ views about the risks of the Internet for people with intellectual disabilities and their preparation and ability to use prevention strategies to address them. The participants (20 family members and 24 staff members belonged to a non-profit association working with people with developmental and intellectual disabilities and were asked to respond to a questionnaire about Internet safety and risks. Findings show some concerns from caregivers with regard to the use of the Internet by people with intellectual disabilities and suggest that this group is more vulnerable to online risks. Participants use different kinds of strategies to prevent the risks but they have not received any formal training. They think that this training should come from the Administration and other organisations. Some differences were found between family and staff members’ responses. Training programmes for all the groups involved in this process (i.e. people with intellectual disabilities, staff and family members should be designed, implemented and assessed to promote the inclusion of people with intellectual disabilities in the digital arena.

  10. Does visual impairment lead to additional disability in adults with intellectual disabilities? A cross-sectional study

    NARCIS (Netherlands)

    Evenhuis, H.M.; Sjoukes, L.; Koot, H.M.; Kooijman, A.C.

    2009-01-01

    Background: This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). Method: In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with

  11. Individuals with mild intellectual disability or borderline intellectual functioning in a forensic addiction treatment centre: Prevalence and clinical characteristics

    NARCIS (Netherlands)

    Luteijn, I.; Didden, H.C.M.; Nagel, J.E.L. van der

    2017-01-01

    Knowledge regarding substance-related problems and offending behavior in individuals with mild intellectual disability or borderline intellectual functioning (MBID; IQ 50-85) has increased over the last years, but is still limited. The present study examined differences in prevalence and clinical

  12. Early Intervention in Children with Developmental Disabilities

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    Beena Johnson

    2016-01-01

    Full Text Available Developmental disabilities consist of conditions that delay or impair the physical, cognitive, and/or psychological development of children. If not intervened at the earliest, these disabilities will cause significant negative impact on multiple domains of functioning such as learning, language, self-care and capacity for independent living. Common developmental disabilities include autism spectrum disorders, intellectual disabilities, developmental delay and cerebral palsy. About one fourth of young children in developing countries are at risk for or have developmental delay or disabilities. Inadequate stimulation has significant negative impact on physical, socioemotional and cognitive development of children. Hence early scientific intervention programs are necessary in the management of children at risk for developmental delay.

  13. Assessment of objectively measured physical activity levels in individuals with intellectual disabilities with and without Down's syndrome.

    Directory of Open Access Journals (Sweden)

    Alexander C Phillips

    Full Text Available To investigate, using accelerometers, the levels of physical activity being undertaken by individuals with intellectual disabilities with and without Down's syndrome.One hundred and fifty two individuals with intellectual disabilities aged 12-70 years from East and South-East England. Physical activity levels in counts per minute (counts/min, steps per day (steps/day, and minutes of sedentary, light, moderate, vigorous, and moderate to vigorous physical activity (MVPA measured with a uni-axial accelerometer (Actigraph GT1M for seven days.No individuals with intellectual disabilities met current physical activity recommendations. Males were more active than females. There was a trend for physical activity to decline and sedentary behaviour to increase with age, and for those with more severe levels of intellectual disability to be more sedentary and less physically active, however any relationship was not significant when adjusted for confounding variables. Participants with Down's syndrome engaged in significantly less physical activity than those with intellectual disabilities without Down's syndrome and levels of activity declined significantly with age.Individuals with intellectual disabilities, especially those with Down's syndrome may be at risk of developing diseases associated with physical inactivity. There is a need for well-designed, accessible, preventive health promotion strategies and interventions designed to raise the levels of physical activity for individuals with intellectual disabilities. We propose that there are physiological reasons why individuals with Down's syndrome have particularly low levels of physical activity that also decline markedly with age.

  14. Public attitudes towards people with intellectual disabilities: a qualitative comparison of white British & South Asian people.

    Science.gov (United States)

    Coles, Sarah; Scior, Katrina

    2012-03-01

    National and international polices promote the acceptance, integration and inclusion of people with intellectual disabilities into mainstream society. However, there is little systematic research into general population attitudes towards people with intellectual disabilities, and even less research, which considers the impact of culture on attitudes. The aim of this study was to explore how young people from White British and South Asian backgrounds differ in their attitudes towards people with intellectual disabilities and above all, how they arrive at their beliefs. A qualitative design utilizing focus groups and individual interviews with White British and South Asian adolescents aged 16-19 years (N = 61) was employed. Questionnaire data were collected to compare this sample to findings from a larger study run concurrently (Attitudes to people with intellectual disabilities: a cross cultural study. Thesis, University College London). Interview and focus group data were analysed using thematic analysis. Thematic analysis yielded five themes and pointed to widespread confusion about the concept of 'intellectual disability', not helped by the continuing invisibility of people with intellectual disabilities in the media. Participants expressed many positive beliefs, yet closer analysis revealed that underlying these may be more ambivalent or even hostile attitudes. Key differences between the two cultural groups are discussed. The findings highlight the need for raising public awareness and the importance of culturally sensitive support. © 2011 Blackwell Publishing Ltd.

  15. Management challenges in children with both epilepsy and intellectual disability.

    Science.gov (United States)

    Buelow, Janice M; Shore, Cheryl P

    2010-01-01

    People who have both epilepsy and intellectual disability have significant problems requiring skilled health care management. Clinical nurse specialists have the unique opportunity to work with these people and their families to help them develop self-management and family management skills. In this article, we describe some factors associated with intellectual disability and epilepsy. In addition, we address the management challenges associated with this dual diagnoses in 3 areas: (1) problems associated with the management of seizure and prescription management, (2) problems associated with the seizure management other than prescriptions, and (3) life management issues. Finally, we suggest ways that clinical nurse specialists can foster development of management skills.

  16. Contribution of Leisure Satisfaction, Acceptance Disability, and Social Relationship to Life Satisfaction among Korean Individuals with Intellectual Disability

    Science.gov (United States)

    Kim, Junhyoung; Schilling, Mary Lou; Kim, May; Han, Areum

    2016-01-01

    There is a dearth of literature that explores the relationships among leisure satisfaction, acceptance of disability, social relationships, and life satisfaction among adults with intellectual disability from Eastern countries. The purpose of this study was to examine how leisure satisfaction, disability acceptance, and social relationships are…

  17. Attitudes towards people with physical or intellectual disabilities among nursing, social work and medical students.

    Science.gov (United States)

    Kritsotakis, George; Galanis, Petros; Papastefanakis, Emmanouil; Meidani, Flora; Philalithis, Anastas E; Kalokairinou, Athena; Sourtzi, Panayota

    2017-12-01

    To examine and compare undergraduate healthcare students' attitudes towards people with physical or intellectual disabilities in Greece. The experience that people with disabilities have with health care is a complex interaction between their medical condition and the social and physical environment. Attitudes of the nursing and healthcare staff affect the quality of care and people's adaptation to their disability, self-image and rehabilitation outcomes. Descriptive cross-sectional survey. Nursing, Social Work and Medicine students (N = 1007, 79.4% female) attending three universities (Athens, Crete) completed during 2014-2016 two standardised scales regarding physical (ATDP-B) and intellectual disability (CLAS-ID). Descriptive and multivariate logistic regression analyses were performed. Attitudes towards people with physical disabilities in Greece (ATDP-B scores) were poor with scores just above the mid-point. Medical studies and higher knowledge and work with individuals with physical disabilities signified marginally more positive attitudes. Gender and age displayed no associations with attitudes. Regarding intellectual disability (CLAS-ID scores), nursing students had slightly less positive attitudes in "Similarity" but more positive attitudes in "Sheltering" subscales. Previous work and contact was related to more favourable and higher age to less favourable "Similarity" and "Sheltering" attitudes. Males had higher "Exclusion" scores. Those who knew people with intellectual disabilities had less favourable "Empowerment" attitudes. Knowledge was related to more positive attitudes in all four CLAS-ID subscales. Greek health and social care students showed poor attitudes towards people with physical and intellectual disability. When holding unfavourable attitudes, healthcare professionals become less involved with the people they care for and they do not provide nursing care to the best of their abilities. Undergraduate and continuing education, along with

  18. Staff Stress and Burnout in Intellectual Disability Services: Work Stress Theory and Its Application

    Science.gov (United States)

    Devereux, Jason; Hastings, Richard; Noone, Steve

    2009-01-01

    Background: Staff in intellectual disability services can be at risk of stress and burnout at work. Given that staff well-being has implications for the quality of life of the staff themselves and people with intellectual disabilities themselves, this is an important research and practical topic. In this paper, we review work stress theories that…

  19. The Rorschach Egocentricity Index in subjects with intellectual disability: a study on the incidence of different psychological pathologies.

    Science.gov (United States)

    Colucci, G; Pellicciotta, A; Buono, S; Di Nuovo, S F

    1998-10-01

    The aims of the present research were to assess the level of self-concern in people with intellectual disability using the Rorschach Egocentricity Index, to correlate the Index with other Rorschach and IQ variables, and to study the effect of associated psychological pathology. The Rorschach Inkblot Test and the Wechsler Intelligence Scale were administered to a group of 75 subjects with intellectual disability, aged between 18 and 38 years, who were divided into subgroups according to their additional diagnosis (i.e. personality disorders, psychosis and depression). A fourth subgroup was composed of people with intellectual disability but without other pathologies. The Egocentricity Index was very low in the subjects with intellectual disability and differences were a result of the effects of additional psychological pathologies. The meaning of the measurement of egocentricity in people with intellectual disability is discussed.

  20. End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives

    NARCIS (Netherlands)

    Wagemans, A.M.; Schrojenstein Lantman-de Valk, H.M. van; Proot, I.M.; Metsemakers, J.; Tuffrey-Wijne, I.; Curfs, L.M.G.

    2013-01-01

    Background: Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. Aim: To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. Design: A qualitative study

  1. Social inclusion and people with intellectual disability and challenging behaviour: a systematic review.

    Science.gov (United States)

    Bigby, Christine

    2012-12-01

    Social inclusion is central to disability policies internationally. The high risk of social exclusion for people with intellectual disability is compounded for those with challenging behaviour. A systematic literature review examined how social inclusion of people with intellectual disability and challenging behaviour has been researched and operationalised in the empirical literature, and aimed to determine what evidence exists about the extent of social inclusion by people with intellectual disability and challenging behaviour. A thematic analysis of the 14 papers identified that social inclusion has been poorly defined and measured, and that the little research that has occurred in respect of people with challenging behaviour has demonstrated their potential to be socially included. Clearer conceptualisation of inclusion, and greater understanding of practices that support social inclusion and system level mechanisms, which ensure goals around inclusion gain prominence in funding and support plans, may address the neglect of this critical quality-of-life domain for people with challenging behaviour.

  2. Cognitive and behavioural therapy of voices for with patients intellectual disability: Two case reports

    Directory of Open Access Journals (Sweden)

    Pernier Sophie

    2007-08-01

    Full Text Available Abstract Background Two case studies are presented to examine how cognitive behavioural therapy (CBT of auditory hallucinations can be fitted to mild and moderate intellectual disability. Methods A 38-year-old female patient with mild intellectual disability and a 44-year-old male patient with moderate intellectual disability, both suffering from persistent auditory hallucinations, were treated with CBT. Patients were assessed on beliefs about their voices and their inappropriate coping behaviour to them. The traditional CBT techniques were modified to reduce the emphasis placed on cognitive abilities. Verbal strategies were replaced by more concrete tasks using roleplaying, figurines and touch and feel experimentation. Results Both patients improved on selected variables. They both gradually managed to reduce the power they attributed to the voice after the introduction of the therapy, and maintained their progress at follow-up. Their inappropriate behaviour consecutive to the belief about voices diminished in both cases. Conclusion These two case studies illustrate the feasibility of CBT for psychotic symptoms with intellectually disabled people, but need to be confirmed by more stringent studies.

  3. New innovations: therapeutic opportunities for intellectual disabilities.

    Science.gov (United States)

    Picker, Jonathan D; Walsh, Christopher A

    2013-09-01

    Intellectual disability is common and is associated with significant morbidity. Until the latter half of the 20th century, there were no efficacious treatments. Following initial breakthroughs associated with newborn screening and metabolic corrections, little progress was made until recently. With improved understanding of genetic and cellular mechanisms, novel treatment options are beginning to appear for a number of specific conditions. Fragile X and tuberous sclerosis offer paradigms for the development of targeted therapeutics, but advances in understanding of other disorders such as Down syndrome and Rett syndrome, for example, are also resulting in promising treatment directions. In addition, better understanding of the underlying neurobiology is leading to novel developments in enzyme replacement for storage disorders and adjunctive therapies for metabolic disorders, as well as potentially more generalizable approaches that target dysfunctional cell regulation via RNA and chromatin. Physiologic therapies, including deep brain stimulation and transcranial magnetic stimulation, offer yet another direction to enhance cognitive functioning. Current options and evolving opportunities for the intellectually disabled are reviewed and exemplified. Copyright © 2013 American Neurological Association.

  4. Doing Research Together: A Study on the Views of Advisors with Intellectual Disabilities and Non-Disabled Researchers Collaborating in Research.

    Science.gov (United States)

    Puyalto, Carol; Pallisera, Maria; Fullana, Judit; Vilà, Montserrat

    2016-03-01

    Despite an increase in inclusive studies in recent years, research on the views of the people with and without disabilities who have participated in these studies is scarce. The aim of this study was to explore the perceptions and views of advisors with intellectual disabilities and non-disabled researchers who collaborated together on a joint project to study transition to adulthood. Two questionnaires were devised, one for advisors and one for researchers; two focus groups were held with people with intellectual disabilities, three focus groups with researchers, and one focus group with all participants together. Thematic analysis was used for the data analysis. The advisors valued this experience as an opportunity to learn new skills, freely express themselves on matters that affect them, and engage in a socially valued activity. The researchers considered that the participation of people with intellectual disabilities contributed to improving the quality of the research. The study provides a better understanding of inclusive research processes by taking into account participants' views. © 2015 John Wiley & Sons Ltd.

  5. Subnormality under debate: discourses and policies on intellectual disability during the late Franco regime.

    Science.gov (United States)

    Del Cura, Mercedes

    2016-01-01

    During the last two decades of the Franco dictatorship, intellectually disabled people became an object of concern on the part of Spanish society and the center of a debate involving the state, the church, certain professional groups and families of those affected. This debate was stoked by ideas circulating in the international setting about the right of the intellectually disabled to integrate into society and enjoy the same opportunities as other individuals. This article seeks to identify the circumstances that led to the emergence of this concern and to note the elements that helped construct the discourses and govern the practices on intellectual disability that developed during the later years of the Franco regime.

  6. Training staff to promote self-management in people with intellectual disabilities.

    Science.gov (United States)

    Sandjojo, Janice; Zedlitz, Aglaia M E E; Gebhardt, Winifred A; Hoekman, Joop; Dusseldorp, Elise; den Haan, Jeanet A; Evers, Andrea W M

    2018-02-26

    People with intellectual disabilities have increasing difficulties managing their daily affairs. This study examined the effectiveness of a staff training, which teaches staff to promote self-management in people with intellectual disabilities. Effectiveness was assessed with questionnaires addressing clients' (n = 26) independence and self-reliance, support needs and challenging behaviour, using a pre-posttest control group design. Additionally, focus groups were conducted with trained staff members 6 months after the training. In the long term, the intervention group showed a significant increase in independence and self-reliance, in contrast to the comparison group. No effect was found on support needs and challenging behaviour. Trained staff members reported limited benefits of the training, but had noticed changes in their attitude and method of working afterwards. Further self-management research is required to investigate how independence and self-reliance can be promoted more effectively in this population. Future trainings should carefully consider their content, format, and implementation. © 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.

  7. Predictors of work participation of young adults with mild intellectual disabilities

    NARCIS (Netherlands)

    Holwerda, Anja; van der Klink, Jac J. L.; de Boer, Michiel R.; Groothoff, Johan W.; Brouwer, Sandra

    Individuals with intellectual disabilities (ID) are three to four times less often employed compared to their non-disabled peers. Evidence for factors associated with work participation of young adults with ID is limited. Furthermore, studies on predictors for sustainable work participation among

  8. Predictors of work participation in young adults with mild intellectual disabilities

    NARCIS (Netherlands)

    Holwerda, A.; van der Klink, J.J.L.; de Boer, M.R.; Groothoff, J.W.; Brouwer, S.

    2013-01-01

    Individuals with intellectual disabilities (ID) are three to four times less often employed compared to their non-disabled peers. Evidence for factors associated with work participation of young adults with ID is limited. Furthermore, studies on predictors for sustainable work participation among

  9. Barriers in health care access faced by children with intellectual disabilities living in rural Uttar Pradesh

    Directory of Open Access Journals (Sweden)

    Jubin Varghese

    2015-09-01

    Full Text Available Purpose: People with disability in rural India face multiple barriers accessing healthcare; our hypothesis is that children with intellectual disability suffer the same but little is known about the barriers faced by them. The objectives of the study were to identify the health seeking behaviours of families with children with intellectual disabilities and the barriers they faced accessing healthcare. Methods: This qualitative study involved interviewing caregivers of children with intellectual disability from a pre-existing community development project in the Sahadoli Kadim block of rural Uttar Pradesh. Semi-structured interviews were also conducted with the local practitioners frequented by these caregivers. Results: Barriers identified were grouped under cognitive, structural and financial barriers which were found to be consistent with the Health Care Access Barrier Model (Carrillo, et al., 2011; WHO, 2011. Cognitive barriers included caregivers being unable to identify the complex health needs of their children. Caregivers lacked appropriate knowledge of intellectual disability, with doctors failing to educate them. Structural and financial barriers encompassed poor availability of healthcare providers and contributed to poor access to specialists. Caregivers had no information about government financial aid and healthcare providers did not refer them to these. Conclusion: Children with intellectual disabilities are forced to live with a poor quality of life because of cognitive, structural and financial barriers they face in accessing health care. Results are specific to children with intellectual disability in rural Sahadoli Kadim and could be used to inform policies and strategies to reduce disparities in health care access for these children.

  10. Current evidence on antenatal care provision for women with intellectual disabilities: A systematic review.

    Science.gov (United States)

    Homeyard, Claire; Montgomery, Elsa; Chinn, Deborah; Patelarou, Evridiki

    2016-01-01

    changing attitudes, alongside integration, more independent living and recognition of rights to family life have meant a steady rise in women with intellectual disabilities becoming pregnant. However, existing evidence shows that women with intellectual disabilities are less likely to seek or attend for regular antenatal care. This population experiences poorer maternal wellbeing and worse pregnancy outcomes compared to the general population, including preterm and low-birthweight babies. to identify and review the existing evidence on the provision of antenatal care among women with intellectual disabilities. a systematic search strategy was formulated using key Medical Sub-Headings terms and related text words for pregnancy, antenatal care and intellectual disability. Comprehensive searches dating back to 1980 using pre-determined criteria followed by a hand search of reference lists and citations were undertaken. Data were extracted using a data extraction form and methodological quality assessed using the framework developed by Caldwell et al. (2011). A three stage textual narrative synthesis was used to integrate the findings from the included studies. searches identified 16 papers that met the inclusion criteria. A majority of the papers focused on women's experience of pregnancy and antenatal care with a paucity of papers identified on midwives knowledge and experience. The four broad themes of the analysis and synthesis performed included: In the Family Way ('I've a baby inside. I've got a life inside of me.׳); Knowledge and advocacy ('...everyone was looking at one another and no one was talking to me...'); Midwives educational needs ('...helpful to have guidance...') and Midwives Attitudes ('...women with [intellectual disabilities]...should not be pregnant'). significant gaps in the evidence base were apparent, however evidence was identified which showed that intellectually disabled pregnant women struggle to understand antenatal information

  11. Peer-Reviewed Articles on Inclusive Research: Do Co-Researchers with Intellectual Disabilities Have a Voice?

    Science.gov (United States)

    Strnadová, Iva; Walmsley, Jan

    2018-01-01

    Background: Inclusive research is increasingly common in intellectual disabilities research, but ways in which voice of co-researchers with intellectual disabilities is presented remain underexplored in the literature. Materials and Method: The authors conducted a literature review and analysis of peer-reviewed journal articles reporting on…

  12. Physical Activity Benefits and Needs in Adults with Intellectual Disabilities: Systematic Review of the Literature

    Science.gov (United States)

    Bartlo, Pamela; Klein, Penelope J.

    2011-01-01

    Regular physical activity is vital for adult individuals with intellectual disabilities. The purpose of this review was to assess critically the evidence on effectiveness of physical activity interventions for adults with intellectual disability. An electronic database search was conducted. Research was then assessed for methodological rigor, and…

  13. Thematic Analysis of the Effectiveness of an Inpatient Mindfulness Group for Adults with Intellectual Disabilities

    Science.gov (United States)

    Yildiran, Hatice; Holt, Rachel R.

    2015-01-01

    The study focused on the effectiveness of group mindfulness for people with intellectual disabilities in an assessment and treatment unit. Six participants with mild or moderate intellectual disabilities were interviewed using semi-structured interviews. The interviews focused on identifying the benefits and difficulties of using mindfulness. The…

  14. Attention-Deficit/Hyperactivity Disorder among Children with and without Intellectual Disability: An Examination across Time

    Science.gov (United States)

    Neece, C. L.; Baker, B. L.; Blacher, J.; Crnic, K. A.

    2011-01-01

    Background: Children with intellectual and developmental disabilities are at heightened risk for mental disorders, and disruptive behaviour disorders appear to be the most prevalent. The current study is a longitudinal examination of attention-deficit/hyperactivity disorder (ADHD) among children with and without intellectual disability (ID) across…

  15. Mortality of People with Intellectual Disabilities in England: A Comparison of Data from Existing Sources

    Science.gov (United States)

    Heslop, Pauline; Glover, Gyles

    2015-01-01

    Background: At present, there is limited statistical information about mortality of people with intellectual disabilities in England. This study explores the data that are currently available. Materials and Methods: Four recent sources of data about mortality of people with intellectual disabilities in England are reviewed: the Confidential…

  16. Making Work Fit Care: Reconciliation Strategies Used by Working Mothers of Adults with Intellectual Disabilities

    Science.gov (United States)

    Chou, Yueh-Ching; Fu, Li-yeh; Chang, Heng-Hao

    2013-01-01

    Background: This study explored the experiences of working mothers with an adult child with intellectual disabilities to understand how they reconcile paid work and care responsibilities. Methods: Fifteen working mothers in Taiwan with an adult child with intellectual disabilities were interviewed, and an interpretative phenomenological approach…

  17. Same-Sex Relationships and Women with Intellectual Disabilities

    Science.gov (United States)

    Burns, Jan; Davies, Danielle

    2011-01-01

    Background: Limited existing research looking at homosexuality and people with intellectual disabilities has identified a low level of knowledge, homophobic attitudes and negative experiences for gay men. Mainstream research has identified traditional gender role beliefs to be highly associated with negative attitudes towards homosexuality. This…

  18. Pre-Partum Distress in Women with Intellectual Disabilities

    Science.gov (United States)

    McConnell, David; Mayes, Rachel; Llewellyn, Gwynnyth

    2008-01-01

    Background: This study investigates depression, anxiety and stress in pregnant women with intellectual disabilities and/or self-reported learning difficulties, and examines the association between these negative emotional states and perceived support and conflict in the women's interpersonal relationships. Method: Eight-hundred-and-seventy-eight…

  19. Peer-reviewed articles on inclusive research: Do co-researchers with intellectual disabilities have a voice?

    Science.gov (United States)

    Strnadová, Iva; Walmsley, Jan

    2018-01-01

    Inclusive research is increasingly common in intellectual disabilities research, but ways in which voice of co-researchers with intellectual disabilities is presented remain underexplored in the literature. The authors conducted a literature review and analysis of peer-reviewed journal articles reporting on inclusive research. The aim was to explore the ways the voices of co-researchers with intellectual disabilities are represented in published peer-reviewed journal articles. The findings indicate that there are a wide range of ways in which inclusive research projects are reported in peer-reviewed journals. However, the experiences, views and opinions of co-researchers are often either absent or very selectively reported. The article concludes that although inclusive research has proliferated in the 21st century, more attention needs to be paid to the ways in which the voices of co-researchers with intellectual disabilities are heard in formal academic contexts. Guidelines for future practice are offered. © 2017 John Wiley & Sons Ltd.

  20. Does assistive technology contribute to social inclusion for people with intellectual disability? A systematic review protocol.

    Science.gov (United States)

    Owuor, John; Larkan, Fiona; Kayabu, Bonnix; Fitzgerald, Geraldine; Sheaf, Greg; Dinsmore, John; McConkey, Roy; Clarke, Mike; MacLachlan, Malcolm

    2018-02-10

    The aim of this review is to answer the following question: Does assistive technology contribute to social inclusion for people with intellectual disability? Previous research on assistive technology has focused on socioeconomic impacts such as education, employment and access to healthcare by people with intellectual disability. There is a need to consolidate evidence on the interaction between intellectual disability, assistive technology, community living and social inclusion. The review will consider studies from all settings: geographical, socioeconomic and care (institutional and community care), published in English. Studies reported in other languages with abstracts in English will be included if they can be translated using Google Translate, otherwise such studies will be included in the appendix. The review will include both qualitative and quantitative studies. The intervention in this review refers to the use of assistive technology to promote community participation or interpersonal relationships (social inclusion) for people with intellectual disability. The outcomes will be behavioural and social benefits of using assistive technology by people with intellectual disability. Enhanced interpersonal relationships and community participation by people with intellectual disability. Data analysis will be in two phases. The first phase will involve analysis of individual study designs separately. The second phase will be narrative/thematic synthesis of all study groups. The review will not create any ethical or safety concerns. At least one peer-reviewed article in a leading journal such as the BMJ is planned. The findings will also be disseminated through a seminar session involving internal audience at Trinity College Dublin and within the Assistive Technologies for people with Intellectual Disability and Autism research programme. CRD42017065447; Pre-results. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article

  1. Interventions for adults with mild intellectual disabilities and mental ill-health: a systematic review.

    Science.gov (United States)

    Osugo, M; Cooper, S-A

    2016-06-01

    People with intellectual disabilities have very high rates of mental ill health. Standard psychosocial interventions designed for the general population may not be accessible for people with mild intellectual disabilities, and drug usage tends to be modified - 'start low and go slow'. This systematic review aims to synthesise the evidence on psychological, pharmacological and electroconvulsive therapy (ECT) interventions for adults with mild intellectual disabilities and mental ill health. PRISMA guidelines were followed. Medline, Embase, PsycINFO and CINAHL were searched, as was grey literature and reference lists of selected papers. Papers were selected based on pre-defined inclusion and exclusion criteria. A proportion of papers were double reviewed. Data was extracted using a structured table. PROSPERO 2015:CRD42015015218. Initially, 18 949 records were identified. Sixteen studies were finally selected for inclusion; seven on psychological therapies, two on group exercise, five on antipsychotics and two on antidepressants. They do not provide definitive evidence for effectiveness of psychosocial interventions, nor address whether starting low and going slow is wise, or causes sub-optimum therapy. There are few evidence-based interventions for people with mild intellectual disabilities and mental ill-health; existing literature is limited in quantity and quality. Group cognitive-behavioural therapies have some supporting evidence - however, further randomised control trials are required, with longer-term follow-up, and larger sample sizes. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  2. Comparison of patients with and without intellectual disability under general anesthesia: A retrospective study.

    Science.gov (United States)

    Sitilci, T; Demirgan, S; Akcay, C; Kahraman, N; Koseoglu, B G; Erdem, M A; Cankaya, A B

    2017-04-01

    We analyzed and retrospectively compared patients with and without intellectual disability (ID) who underwent oral surgery under general anesthesia at Istanbul University, Faculty of Dentistry, Department of General Anesthesia, between October 2012 and June 2013 with regard to the following categories: Demographic features, American Society of Anesthesiologists (ASA) classification, Mallampati score, type of anesthetic drug used during the operation, type of intubation used, any difficulties with tracheal intubation, presence of systemic diseases, and recovery times after ending general anesthesia. A total of 348 patients were selected from the Department of Maxillofacial Surgery and the Department of Pedodontics who underwent surgery with general anesthesia. Medical histories of all patients were taken, and their electrocardiography, chest X-rays, complete blood count, and blood clotting tests were checked during a preoperative assessment. Mallampati evaluations were also performed. Patients were grouped into ASA I, II, or III according to the ASA classification and were treated under general anesthesia. There was no significant difference between normal and intellectually disabled patients in terms of gender, Mallampati scores, intubation difficulties, mean anesthetic period, time to discharge, or postoperative nausea and vomiting. Epilepsy and genetic diseases in intellectually disabled patients were significantly more common than in non-ID (NID) patients. However, the frequency of diabetes and chronic obstructive pulmonary disease in NID patients was significantly higher than in the intellectually disabled patients. Dental treatment of intellectually disabled patients under general anesthesia can be performed just as safely as that with NID patients.

  3. The Effectiveness of Backward Chaining Methods to Improve Skills in Children with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Arip Apriyadi

    2017-03-01

    Full Text Available A child with intellectual disability has problems in adaptive behavior such as eating skill. The research objective was to describe: 1 the ability of the child with intellectual disability before being given intervention using backward chaining method, 2 the ability of the child with intellectual disability after being given intervention using backward chaining method, and 3 the effectiveness of backward chaining method to increase the eating skills for child with intellectual disability. The method of this study was an experimental method by using the Single Subject Research (SSR with the A-B-A design model. The results showed that the percentage of overlap between the baseline condition-1 and the intervention condition was 0%. The calculation declared that there was increase eating skill for child with intellectual disability with backward chaining. Anak disabilitas intelektual memiliki masalah dalam perilaku adaptif seperti pada keterampilan makan. Tujuan penelitian ini untuk mendeskripsikan: 1 kemampuan anak disabilitas intelektual sebelum diberikan intervensi menggunakan backward chaining, 2 kemampuan anak disabilitas intelektual setelah diberikan intervensi menggunakan backward chaining, dan 3 keefektifan backward chaining untuk meningkatkan keterampilan makan. Metode penelitian yang digunakan dalam penelitian ini adalah metode eksperimen dengan menggunakan Single Subject Reseach (SSR dengan desain A-B-A. Hasil penelitian menunjukan perolehan presentase overlap antara kondisi baseline-1 ke kondisi intervensi sebesar 0%. Perhitungan tersebut menyatakan adanya pengaruh keefektifan backward chaining sebagai intervensi terhadap peningkatan keterampilan makan sebagai target behavior.

  4. Caring for independent lives: geographies of caring for young adults with intellectual disabilities.

    Science.gov (United States)

    Power, Andrew

    2008-09-01

    This paper engages with the emerging disciplinary clash between 'care' and 'independence' within disability studies by examining the geography of home care for young adults with intellectual disabilities. The care system as a whole is viewed as central to disablist structures within disability studies (see Thomas, C. (2007). Sociologies of disability and illness: Contested ideas in disability studies and medical sociology. Hampshire: Palgrave Macmillan.). However, despite the theorisation of dependency as being in antipathy to the goals of the disability movement, caregiving at home still continues to dominate community care. The paper attempts to address how family carers are 'caught-in-the-middle' between their 'duty' to care and at the same time, perpetuating dependency; the reality being that parents have to deal with issues of being overprotective and confronting various social assumptions about disability. It examines the narratives from 25 family caregivers in Ireland who provide personal assistance to young adults with intellectual disabilities.

  5. Changes in Domain Specific Self-Perception amongst Young People with Intellectual Disability: A Longitudinal Study

    Science.gov (United States)

    O'Byrne, Clara; Muldoon, Orla T.

    2018-01-01

    This study examines the changes that occur in multidimensional self-concept of adolescents with a diagnosis of intellectual disabilities, across gender and category of intellectual disability (borderline, mild, moderate) groups. A sample of 54 young people completed the Harter Self-Perception Profile. Using a three-wave longitudinal study…

  6. Family Members' Reports of the Technology Use of Family Members with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Palmer, S. B.; Wehmeyer, M. L.; Davies, D. K.; Stock, S. E.

    2012-01-01

    Background: A nationwide survey of family members of people with intellectual and developmental disabilities ranging in age from birth through adulthood was conducted to replicate a similar effort by Wehmeyer and update the knowledge base concerning technology use by people with intellectual and developmental disabilities. Method: Survey responses…

  7. “You Can’t be Cold and Scientific”: Community Views on Ethical Issues in Intellectual Disability Research

    Science.gov (United States)

    McDonald, Katherine E.; Schwartz, Nicole M.; Gibbons, Colleen M.; Olick, Robert S.

    2015-01-01

    Perceptions, attitudes, and ethical concerns related to conducting research with adults with intellectual disability hinder scientific innovation to promote health. Yet we lack an understanding of community views on effective research policy and practice. To address this knowledge void, we qualitatively studied the views of adults with intellectual disability and those who provide them support regarding research participation of adults with intellectual disability. We found substantial support for their inclusion, particularly given the possibility of benefits to adults with intellectual disability, researchers, and society. We also found concerns for potential harm and differing ideas on how to promote safety. Our findings emphasize the importance of their inclusion in research, and the need for policies and practices that promote respect and safety. PMID:25769310

  8. Homicide Defendants with Intellectual Disabilities: Issues in Diagnosis in Capital Cases

    Science.gov (United States)

    Greenspan, Stephen

    2011-01-01

    This article explores the many issues involved in establishing the diagnosis of intellectual disability in a so-called Atkins (death penalty exemption) hearing. Among the issues addressed are the need to go beyond IQ scores in establishing intellectual deficits, the need to go beyond rating scores in establishing adaptive behavior deficits, the…

  9. Meeting the support needs of persons with mild intellectual disability or borderline intellectual functioning : Still a long way to go

    NARCIS (Netherlands)

    Nouwens, P J G; Smulders, N B M; Embregts, P J C M; van Nieuwenhuizen, C

    2017-01-01

    Background: Among persons with a mild intellectual disability or borderline intellectual functioning, differences in their characteristics imply that a differentiated approach is required to meet their needs. This retrospective study examined whether the history of support/treatment programs and the

  10. Exclusion of children with intellectual disabilities from regular ...

    African Journals Online (AJOL)

    Study investigated why teachers exclude children with intellectual disability from the regular classrooms in Nigeria. Participants were, 169 regular teachers randomly selected from Oyo and Ogun states. Questionnaire was used to collect data result revealed that 57.4% regular teachers could not cope with children with ID ...

  11. Intellectual Disability Modifies Gender Effects on Disruptive Behaviors

    Science.gov (United States)

    Einfeld, Stewart L.; Gray, Kylie M.; Ellis, Louise A.; Taffe, John; Emerson, Eric; Tonge, Bruce J.; Horstead, Sian K.

    2010-01-01

    In typically developing children, boys are more commonly diagnosed than girls with disruptive behavior disorders, namely, attention-deficit/hyperactivity disorder, conduct disorder, and oppositional defiant disorder. For children with intellectual disability (ID), the evidence for this gender effect is less clear. In this report we examine gender…

  12. Learning capacity in adolescents with mild intellectual disabilities

    NARCIS (Netherlands)

    Tiekstra, Marlous; Hessels, Marco G P; Minnaert, Alexander E M G

    2009-01-01

    Scores on a learning potential test (the Hessels Analogical Reasoning Test) were examined to assess how to provide a better estimate of the learning capacity of students with mild intellectual disabilities compared to IQ scores. As a criterion, a dynamic test of chemistry learning was used. 46

  13. Foundations of reading comprehension in children with intellectual disabilities

    NARCIS (Netherlands)

    Wingerden-Fontein, E.G. van; Segers, P.C.J.; Balkom, L.J.M. van; Verhoeven, L.T.W.

    2017-01-01

    Background Knowledge about predictors for reading comprehension in children with intellectual disabilities (ID) is still fragmented. Aims This study compared reading comprehension, word decoding, listening comprehension, and reading related linguistic and cognitive precursor measures in children

  14. Parents with Intellectual Disabilities Experiencing Challenging Child Routines: A Pilot Study Using Embedded Self-Determination Practices

    Science.gov (United States)

    Knowles, Christen; Blakely, Allison; Hansen, Sarah; Machalicek, Wendy

    2017-01-01

    Background: Practices to facilitate self-determination have not received appropriate attention in research concerning parents with intellectual disabilities (ID). Likewise, parenting interventions for adults with intellectual disabilities have seldom observed both parent and child behavioural outcomes. Methods: This study evaluated the…

  15. Role of nucleosome remodeling in neurodevelopmental and intellectual disability disorders

    Directory of Open Access Journals (Sweden)

    Alberto J Lopez

    2015-04-01

    Full Text Available It is becoming increasingly important to understand how epigenetic mechanisms control gene expression during neurodevelopment. Two epigenetic mechanisms that have received considerable attention are DNA methylation and histone acetylation. Human exome sequencing and genome-wide association studies have linked several neurobiological disorders to genes whose products actively regulate DNA methylation and histone acetylation. More recently, a third major epigenetic mechanism, nucleosome remodeling, has been implicated in human developmental and intellectual disability disorders. Nucleosome remodeling is driven primarily through nucleosome remodeling complexes with specialized ATP-dependent enzymes. These enzymes directly interact with DNA or chromatin structure, as well as histone subunits, to restructure the shape and organization of nucleosome positioning to ultimately regulate gene expression. Of particular interest is the neuron-specific Brg1/hBrm Associated Factor (nBAF complex. Mutations in nBAF subunit genes have so far been linked to Coffin-Siris syndrome, Nicolaides-Baraitser syndrome, schizophrenia, and Autism Spectrum Disorder. Together, these human developmental and intellectual disability disorders are powerful examples of the impact of epigenetic modulation on gene expression. This review focuses on the new and emerging role of nucleosome remodeling in neurodevelopmental and intellectual disability disorders and whether nucleosome remodeling affects gene expression required for cognition independently of its role in regulating gene expression required for development.

  16. Perspectives of intellectual disability in Mexico: epidemiology, policy, and services for children and adults.

    Science.gov (United States)

    Katz, Gregorio; Márquez-Caraveo, Maria E; Lazcano-Ponce, Eduardo

    2010-09-01

    Intellectual disability is a public health issue, which has largely been overlooked in Mexico. The magnitude of this problem is unknown; few programs exist for adults and mental health professionals focus mainly on identifying treatable comorbidities. In Mexico, there is an example of a best practice in social integration. This program has benefited hundreds of adults with intellectual disability by teaching four basic abilities: practical academic skills; vocational skills; independent living skills; and skills for community integration. In a sociocultural and economic context such as Mexico's, social integration programs are feasible and necessary in order to provide an organized social response to the health, social, and vocational needs of people with intellectual disability and should become part of public policy.

  17. Issues Concerning Self-Report Data and Population-Based Data Sets Involving People with Intellectual Disabilities

    Science.gov (United States)

    Emerson, Eric; Felce, David; Stancliffe, Roger J.

    2013-01-01

    This article examines two methodological issues regarding ways of obtaining and analyzing outcome data for people with intellectual disabilities: (a) self-report and proxy-report data and (b) analysis of population-based data sets. Some people with intellectual disabilities have difficulties with self-reporting due to problems of understanding and…

  18. Research Ethics and the Use of Visual Images in Research with People with Intellectual Disability

    Science.gov (United States)

    Boxall, Kathy; Ralph, Sue

    2009-01-01

    The aim of this paper is to encourage debate about the use of creative visual approaches in intellectual disability research and discussion about Internet publication of photographs. Image-based research with people with intellectual disability is explored within the contexts of tighter ethical regulation of social research, increased interest in…

  19. Staffs' Knowledge and Perceptions of Working with Women with Intellectual Disabilities and Mental Health Problems

    Science.gov (United States)

    Taggart, L.; McMillan, R.; Lawson, A.

    2010-01-01

    Aim: There is a growing evidence of the physical and mental health inequalities in people with intellectual disability (ID) although less has been written concerning the mental health of women with ID (International Association for the Scientific Study of Intellectual Disabilities). This is compared with the substantive literature published within…

  20. Intellectual Disabilities, Challenging Behaviour and Referral Texts: A Critical Discourse Analysis

    Science.gov (United States)

    Nunkoosing, Karl; Haydon-Laurelut, Mark

    2011-01-01

    The texts of referrals written by workers in residential services for people with learning difficulties constitute sites where contemporary discourses of intellectual disabilities are being constructed. This paper uses Critical Discourse Analysis to examine referrals made to a Community Learning Disability Team (CLDT). The study finds referral…

  1. Phenotypic heterogeneity of intellectual disability in patients with congenital insensitivity to pain with anhidrosis: A case report and literature review.

    Science.gov (United States)

    Liu, Zhenlei; Liu, Jiaqi; Liu, Gang; Cao, Wenjian; Liu, Sen; Chen, Yixin; Zuo, Yuzhi; Chen, Weisheng; Chen, Jun; Zhang, Yu; Huang, Shishu; Qiu, Guixing; Giampietro, Philip F; Zhang, Feng; Wu, Zhihong; Wu, Nan

    2018-01-01

    Congenital insensitivity to pain with anhidrosis (CIPA) is a rare autosomal recessive heterogeneous disorder mainly caused by mutations in the neurotrophic tyrosine receptor kinase 1 gene ( NTRK1) and characterized by insensitivity to noxious stimuli, anhidrosis, and intellectual disability. We herein report the first north Han Chinese patient with CIPA who exhibited classic phenotypic features and severe intellectual disability caused by a homozygous c.851-33T>A mutation of NTRK1, resulting in aberrant splicing and an open reading frame shift. We reviewed the literature and performed in silico analysis to determine the association between mutations and intellectual disability in patients with CIPA. We found that intellectual disability was correlated with the specific Ntrk1 protein domain that a mutation jeopardized. Mutations located peripheral to the Ntrk1 protein do not influence important functional domains and tend to cause milder symptoms without intellectual disability. Mutations that involve critical amino acids in the protein are prone to cause severe symptoms, including intellectual disability.

  2. A t(5;16) translocation is the likely driver of a syndrome with ambiguous genitalia, facial dysmorphism, intellectual disability, and speech delay.

    Science.gov (United States)

    Ozantürk, Ayşegül; Davis, Erica E; Sabo, Aniko; Weiss, Marjan M; Muzny, Donna; Dugan-Perez, Shannon; Sistermans, Erik A; Gibbs, Richard A; Özgül, Köksal R; Yalnızoglu, Dilek; Serdaroglu, Esra; Dursun, Ali; Katsanis, Nicholas

    2016-03-01

    Genetic studies grounded on monogenic paradigms have accelerated both gene discovery and molecular diagnosis. At the same time, complex genomic rearrangements are also appreciated as potent drivers of disease pathology. Here, we report two male siblings with a dysmorphic face, ambiguous genitalia, intellectual disability, and speech delay. Through quad-based whole-exome sequencing and concomitant molecular cytogenetic testing, we identified two copy-number variants (CNVs) in both affected individuals likely arising from a balanced translocation: a 13.5-Mb duplication on Chromosome 16 (16q23.1 → 16qter) and a 7.7-Mb deletion on Chromosome 5 (5p15.31 → 5pter), as well as a hemizygous missense variant in CXorf36 (also known as DIA1R). The 5p terminal deletion has been associated previously with speech delay, whereas craniofacial dysmorphia and genital/urinary anomalies have been reported in patients with a terminal duplication of 16q. However, dosage changes in either genomic region alone could not account for the overall clinical presentation in our family; functional testing of CXorf36 in zebrafish did not induce defects in neurogenesis or the craniofacial skeleton. Notably, literature and database analysis revealed a similar dosage disruption in two siblings with extensive phenotypic overlap with our patients. Taken together, our data suggest that dosage perturbation of genes within the two chromosomal regions likely drives the syndromic manifestations of our patients and highlight how multiple genetic lesions can contribute to complex clinical pathologies.

  3. 77 FR 43335 - Administration on Intellectual and Developmental Disabilities; Agency Information Collection...

    Science.gov (United States)

    2012-07-24

    ... Intellectual and Developmental Disabilities; Agency Information Collection Activities; Proposed Collection; Comment Request; Financial Status Reporting Form for State Councils on Developmental Disabilities AGENCY... hours per Total burden respondents respondent response hours Financial Status Reporting Form for State...

  4. Measuring Physical Activity with Pedometers in Older Adults with Intellectual Disability : Reactivity and Number of Days

    NARCIS (Netherlands)

    Hilgenkamp, Thessa; Van Wijck, Ruud; Evenhuis, Heleen

    The minimum number of days of pedometer monitoring needed to estimate valid average weekly step counts and reactivity was investigated for older adults with intellectual disability. Participants (N = 268) with borderline to severe intellectual disability ages 50 years and older were instructed to

  5. Perceptions of the Risks and Benefits of Internet Access and Use by People with Intellectual Disabilities

    Science.gov (United States)

    Chadwick, Darren D.; Quinn, Sally; Fullwood, Chris

    2017-01-01

    Background: Information and communication technologies, with the Internet at the forefront, have the potential to enhance the knowledge, service, employment, development and social interactional opportunities available to people with intellectual disabilities. Despite this, people with intellectual disabilities are not accessing the Internet to…

  6. The effectiveness of psychosocial interventions for children with a psychiatric disorder and mild intellectual disability to borderline intellectual functioning: A systematic literature review and meta-analysis.

    Science.gov (United States)

    Kok, Lidwien; van der Waa, Anne; Klip, Helen; Staal, Wouter

    2016-01-01

    Children with intellectual disability frequently have difficulties in adapting to their environment. The extent of the experienced problems does not only depend on cognitive functioning but is influenced by other factors, such as the presence of a psychiatric disorder or other brain disorders, or adverse environmental factors. Several epidemiological studies show that children with intellectual disabilities are at an increased risk to develop psychiatric disorders. This is also true for youth with a mild intellectual disability and even those with borderline intellectual functioning (mild to borderline intellectual disability (MBID)). Psychiatric disorders are often overlooked because behavioral problems are rather attributed to the intellectual disability. Consequently, effective psychiatric interventions, which are needed to improve the level of functioning, are not applied. This review aimed to systematically evaluate the currently available, qualitatively sound research concerning the effectiveness of psychosocial interventions, specifically directed at psychiatric disorders in children with MBID. Assessed for eligibility were 1409 unique reports, and the review ultimately included only 12 reports. Review of the results and meta-analyses showed that the majority of studies suffer from multiple limitations and that methodological variations between studies are extensive. This possibly reflects the high variance of factors that may be involved in MBID. It will be important in future research to address multi-causality. © The Author(s) 2015.

  7. Intellectual disability sport and Paralympic classification

    Directory of Open Access Journals (Sweden)

    Anna van Dijk

    2017-06-01

    Full Text Available Sometimes it might seem that elite disability sport, especially as represented by the Paralympic Movement, is only for athletes with an amputation, or a spinal cord injury, or cerebral palsied or blind athletes, rather than for athletes with an intellectual disability (ID. However, after we set out the various opportunities open to ID athletes, that offer different kinds of sporting engagement, we find interesting and alarming issues with respect to the elite competitive event offer for athletes with ID. In this paper, we discuss the following: the problem of inclusion, some concerns that arise in the classification of paralympic athletes such as self-declaration and eligibility, the open nature of ID sports competition, and the sport offer available for these athletes.

  8. An Assessment of Intellectual Disability Among Aboriginal Australians

    Science.gov (United States)

    Glasson, E. J.; Sullivan, S. G.; Hussain, R.; Bittles, A. H.

    2005-01-01

    Background: The health and well-being of Indigenous people is a significant global problem, and Aboriginal Australians suffer from a considerably higher burden of disease and lower life expectancy than the non-Indigenous population. Intellectual disability (ID) can further compromise health, but there is little information that documents the…

  9. Sexual Risk Assessment for People with Intellectual Disabilities

    Science.gov (United States)

    Embregts, P.; van den Bogaard, K.; Hendriks, L.; Heestermans, M.; Schuitemaker, M.; van Wouwe, H.

    2010-01-01

    Given that sexually offensive behavior on the part of people with intellectual disabilities has been identified as a significant problem, we developed a risk assessment questionnaire, that takes not only various static and dynamic factors into account but also environmental risk variables. Psychologists and staff members completed this Risk…

  10. Teaching menstrual care skills to intellectually disabled female students.

    Science.gov (United States)

    Altundağ, Sebahat; Çalbayram, Nazan Çakırer

    2016-07-01

    The aim of this study was to teach pad replacement skills to intellectually disabled adolescent female students during their menstruation periods by demonstrating on a dummy. It may be difficult to make intellectually disabled adolescents achieve self-care during menstruation. In addition, there are difficulties experienced in explaining menstruation, such as physical changes and the practice of cleaning during this period. The study used a 'One group pretest and post-test model'. The study was performed in a special educational institution. The population consisted of 77 female students in the high school section. Calculation of a sample size was not attempted, and 54 students with no attendance issues agreed to take part in the study and were included. In this work, we found that pad replacement training significantly changed the scores of mentally disabled adolescents before and after training. Our training yielded positive results, and the population improved their skills at all stages of skill building. Training adolescents with mental disabilities helped them gain hygiene habits. Performance of these trainings occurs at the beginning of menstrual hygiene education. To achieve improved success in life, it is important that adolescents assume the responsibility of self-care and manage sustained care activity on their own. © 2016 John Wiley & Sons Ltd.

  11. Concept Acquisition in Children with Mild Intellectual Disability: Factors Affecting the Abstraction of Prototypical Information.

    Science.gov (United States)

    Hayes, Brett K.; Conway, Robert N.

    2000-01-01

    A study investigated effects of variations in the number of instances comprising a category on concept acquisition by 31 children (ages 9-14) with mild intellectual disability and 19 controls. Intellectual disability had little effect on ability to abstract a category prototype but did reduce use of exemplar-specific information for recognition.…

  12. Augmented Reality for Teaching Science Vocabulary to Postsecondary Education Students with Intellectual Disabilities and Autism

    Science.gov (United States)

    McMahon, Don D.; Cihak, David F.; Wright, Rachel E.; Bell, Sherry Mee

    2016-01-01

    The purpose of this study was to examine the use of an emerging technology called augmented reality to teach science vocabulary words to college students with intellectual disability and autism spectrum disorders. One student with autism and three students with an intellectual disability participated in a multiple probe across behaviors (i.e.,…

  13. Mortality among a Cohort of Persons with an Intellectual Disability in New South Wales, Australia

    Science.gov (United States)

    Florio, Tony; Trollor, Julian

    2015-01-01

    Objectives: The main objective of the study was to compare mortality for people with an intellectual disability (ID) to the general population in New South Wales (NSW), Australia. A second objective was to provide mortality data for people with an intellectual disability from NSW in a standardized format, which allows for international comparisons…

  14. Serum Uric Acid, Hyperuricemia and Body Mass Index in Children and Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Lin, Jin-Ding; Lin, Pei-Ying; Lin, Lan-Ping; Hsu, Shang-Wei; Yen, Chia-Feng; Fang, Wen-Hui; Wu, Sheng-Ru; Chien, Wu-Chien; Loh, Ching-Hui; Chu, Cordia M.

    2009-01-01

    The aims of the preset study were to describe the profile of serum uric acid, the prevalence of hyperuricemia and its risk factors among children and adolescents with intellectual disabilities. We conducted a cross-sectional study of 941 children and adolescents with intellectual disabilities (aged 4-18 years) who participated in annual health…

  15. The Impact of Intellectual Disability, Caregiver Burden, Family Functioning, Marital Quality, and Sense of Coherence

    Science.gov (United States)

    Al-Krenawi, Alean; Graham, John R.; Al Gharaibeh, Fakir

    2011-01-01

    The present article is the first to consider the impact of intellectual disability on Bedouin-Arab families' caregiver burden, family functioning, marital quality, and sense of coherence. A random sample of 300 Bedouin-Arab parents with one or more intellectually disabled children, and a control group (n = 100) completed the McMaster Family…

  16. Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support.

    Science.gov (United States)

    Dodd, Karen; Watchman, Karen; Janicki, Matthew P; Coppus, Antonia; Gaertner, Claudia; Fortea, Juan; Santos, Flavia H; Keller, Seth M; Strydom, Andre

    2017-09-07

    Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death. An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services. The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person's needs as dementia progresses. Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

  17. The first year: the support needs of parents caring for a child with an intellectual disability.

    Science.gov (United States)

    Douglas, Tracy; Redley, Bernice; Ottmann, Goetz

    2016-11-01

    To describe the support needs of parents caring for a child with an intellectual disability in the first year of life. Parents of children with intellectual disabilities face significant challenges during the first year of their child's life which is an important developmental period not previously addressed in the literature. The provision of support by health professionals, particularly nurses and midwives, during this crucial period can impact on parental well-being and on the health and developmental outcomes of their children. However, parents often feel unsupported. The study used a qualitative descriptive methodology. Semi-structured interviews were conducted with parents of eleven children with an intellectual disability in Victoria, Australia, during 2014. Interviews were digitally recorded, transcribed verbatim and analysed using thematic data analysis. Three key areas of support need were identified to assist parents to provide effective care for their child with an intellectual disability in the first year of life: (1) emotional support as parents adjusted to their role of caring for a child with an intellectual disability; (2) information support as they embarked on a quest for knowledge; and (3) support to facilitate their connection to peer networks. The findings highlighted inconsistent provision of support for parents. This study informs health professionals about how to provide holistic, timely support to parents of children with intellectual disabilities in the first year of life. There is an urgent need to review how nurses and midwives can provide relevant support that is responsive to parents' needs. © 2016 John Wiley & Sons Ltd.

  18. Post hoc analysis of plasma amino acid profiles: towards a specific pattern in autism spectrum disorder and intellectual disability.

    Science.gov (United States)

    Delaye, Jean-Baptiste; Patin, Franck; Lagrue, Emmanuelle; Le Tilly, Olivier; Bruno, Clement; Vuillaume, Marie-Laure; Raynaud, Martine; Benz-De Bretagne, Isabelle; Laumonnier, Frederic; Vourc'h, Patrick; Andres, Christian; Blasco, Helene

    2018-01-01

    Objectives Autism spectrum disorders and intellectual disability present a challenge for therapeutic and dietary management. We performed a re-analysis of plasma amino acid chromatography of children with autism spectrum disorders ( n = 22) or intellectual disability ( n = 29) to search for a metabolic signature that can distinguish individuals with these disorders from controls ( n = 30). Methods We performed univariate and multivariate analyses using different machine learning strategies, from the raw data of the amino acid chromatography. Finally, we analysed the metabolic pathways associated with discriminant biomarkers. Results Multivariate analysis revealed models to discriminate patients with autism spectrum disorders or intellectual disability and controls from plasma amino acid profiles ( P intellectual disability patients shared similar differences relative to controls, including lower glutamate ( P intellectual disability revealed the involvement of urea, 3-methyl-histidine and histidine metabolism. Biosigner analysis and univariate analysis confirmed the role of 3-methylhistidine ( P = 0.004), histidine ( P = 0.003), urea ( P = 0.0006) and lysine ( P = 0.002). Conclusions We revealed discriminant metabolic patterns between autism spectrum disorders, intellectual disability and controls. Amino acids known to play a role in neurotransmission were discriminant in the models comparing autism spectrum disorders or intellectual disability to controls, and histidine and b-alanine metabolism was specifically highlighted in the model.

  19. Internet and cell phone usage patterns among young adults with intellectual disabilities.

    Science.gov (United States)

    Jenaro, Cristina; Flores, Noelia; Cruz, Maribel; Pérez, Ma Carmen; Vega, Vanessa; Torres, Víctor A

    2018-03-01

    The risks and opportunities associated with the use of technologies are of growing research interest. Patterns of technology usage illuminate these opportunities and risks. However, no studies have assessed the usage patterns (frequency, duration, and intensity) and related factors in young people with intellectual disabilities. Questionnaires on Internet and cell phone usage patterns, the Internet Over-Use Scale and the Cell-Phone Over-Use Scale, as well as the Beck Depression Inventory were filled out in one-on-one interviews of 216 youth with intellectual disabilities. Young people with disabilities make more social and recreational rather than educational use of these tools, and show higher rates of excessive use of both technologies than a comparison group of 410 young people without disabilities. Also, their overuse is associated with other unhealthy behaviors. The framework of support needs of people with disabilities should be considered to promote healthy Internet and cell phone use. © 2017 John Wiley & Sons Ltd.

  20. A study about siblings in the face of intellectual disability

    Directory of Open Access Journals (Sweden)

    Olga Lizasoain

    2010-05-01

    Full Text Available Research has shown that siblings of a person with intellectual disabilities can present problems of identification and socialization, the need for compensation, early adoption of large responsibilities, feelings of abandonment, guilt, shame or sadness. Nevertheless, if the needs of these brothers and sisters are facing, disability can become a source of personal and family enrichment. This article presents the initial conclusions drawn after a series of personal interviews conducted with siblings of students in a special education school. Awareness of the issue leads us to approach this study with the aim of providing guidelines of intervention to help siblings to minimize the potential negative impact of having a brother or sister with intellectual disabilities, and facilitate the development of attitudes and behaviours that enable them to face stressful situations in a constructive manner. Thanks to the direct experience of those who have been confronted with this situation, is issued to prevent psychosocial problems associated with having a brother or sister with these features.

  1. Intellectual disability, consumerism and identity: to have and have not?

    Science.gov (United States)

    McClimens, Alex; Hyde, Martin

    2012-06-01

    Here we consider the consumer society as it currently exists in the UK and examine its relationship and relevance to the population of individuals with intellectual disability. We do this through a reading of the associated literature on theories of shopping and consumption which we then contrast with research evidence as it applies to the lives of people with intellectual disability. By brining together these two perspectives we hope to shine some light on ideas around identity and choice. We then transfer these arguments to the health and social care sector. Here we ask whether an economic model which has been exposed as divisive and exclusionary should be used in the administration of social secutity benefits of the kind accesed by people with a range of disabilities. We conclude that the unchallenged advance of marketisation within health and social care may benefit those who are financially able but for those who are economically disadvantaged the choices offered are illusory at best.

  2. Test Anxiety Research: Students with Vision Impairments and Students with Mild Intellectual Disabilities

    Science.gov (United States)

    Datta, Poulomee

    2014-01-01

    There is an absence of research on test anxiety in students with disabilities although such testing is taken for granted among students without disabilities. This study investigated the test anxiety of the students in each of the two disability groups, those with vision impairments and those with intellectual disabilities who are placed in…

  3. The Legal Trends--Implications for Menstruation/Fertility Management for Young Women Who Have an Intellectual Disability.

    Science.gov (United States)

    Taylor, Miriam; Carlson, Glenys

    1993-01-01

    This paper reviews Family Court of Australia cases concerning performing hysterectomies on premenarchal women who have an intellectual disability, with specific reference to relevant Australian legislation. The paper discusses the implications for women who have an intellectual disability, which may have international applicability. (Author/JDD)

  4. Nutrition Education and Support Program for Community-Dwelling Adults with Intellectual Disabilities

    Science.gov (United States)

    Humphries, Kathleen; Traci, Meg Ann; Seekins, Tom

    2008-01-01

    To test the efficacy, acceptability, and appropriateness of a nutrition education and support program, 4 community-based group homes for adults with intellectual or developmental disabilities participated in a pilot intervention with extended baseline period and pre--post-test design. Adults (N = 32) with intellectual or developmental…

  5. Tobacco Use among Individuals with Intellectual or Developmental Disabilities: A Brief Review

    Science.gov (United States)

    Steinberg, Marc L.; Heimlich, Laura; Williams, Jill M.

    2009-01-01

    Tobacco use is the leading preventable cause of death in the United States. Although few tobacco control efforts target individuals with intellectual and/or developmental disabilities, this population may be especially vulnerable to the deleterious effects of tobacco use and dependence. Individuals with intellectual and developmental disabilities…

  6. Neuropsychological Characteristics of Adults with Comorbid ADHD and Borderline/Mild Intellectual Disability

    Science.gov (United States)

    Rose, E.; Bramham, J.; Young, S.; Paliokostas, E.; Xenitidis, K.

    2009-01-01

    This study aimed to characterise the neuropsychological functioning of adults with comorbid attention deficit hyperactivity disorder (ADHD) and intellectual disability. Individuals with ADHD and mild-borderline range intelligence (N=59) and individuals with ADHD and normal intellectual functioning (N=95) were compared on attentional and response…

  7. High School Counselors' Attitudes toward the Sexuality of Students with Intellectual Disabilities

    Science.gov (United States)

    Parker, Latofia P.

    2012-01-01

    The purpose of this study was to examine high school counselors' attitudes toward the sexuality of students with intellectual disabilities. One hundred and twenty-two high school counselors in Alabama were the participants for this study. Participants completed the "Attitudes towards Sexuality and Students with Intellectual Disability…

  8. The Arab Community in Israel Coping with Intellectual and Developmental Disability

    Directory of Open Access Journals (Sweden)

    Isack Kandel

    2004-01-01

    Full Text Available The Arab family in Israel is still embedded in the traditional society with extended family support systems, but we see a population in transition influenced by the surrounding society. This paper looks at the different religious attitudes toward the exceptional people in our society (i.e., the family reaction to a child born with intellectual or developmental disability, reviews recent studies on the Arab and Bedouin families in Israel, and presents data on the Arab population in residential care centers.Today, out of 57 residential care centers in Israel for persons with intellectual disability, 13 (22.8% are providing service to the non-Jewish population. The Arab population constitutes 12–13% of the total residential care population, lower than the 19–20% in the total population. In residential care, the Arab population is characterized by younger children with severe and profound intellectual disability. The informal family support system is still a very important factor in the Arab family in Israel, a fact that we believe should be strengthened by implementing the British and Danish model of nurse home visitation.

  9. Participatory research, people with intellectual disabilities and ethical approval: making reasonable adjustments to enable participation.

    Science.gov (United States)

    Northway, Ruth; Howarth, Joyce; Evans, Lynne

    2015-02-01

    The aim of this paper is to explore how making reasonable adjustments to the process of securing ethical approval for research can facilitate the meaningful involvement of people with intellectual disabilities as members of a research team. This is achieved through critical reflection upon the approach taken within one participatory research study whose objective was to explore how people with intellectual disabilities understand abuse. Internationally participatory research studies (in which active involvement of community members in all stages of the research process is sought) are becoming increasingly common in the context of health care and, more specifically, within research involving people with intellectual disabilities. However, whilst it is acknowledged that participatory research gives rise to specific ethical challenges, how (or if) involvement in securing ethical approval is facilitated, is not discussed in most research reports. The significance of this paper is that it seeks to address this gap by exploring how meaningful participation can be promoted by making reasonable adjustments. Within the study, the research team worked in collaboration with the ethics committee to identify potential barriers that could prevent the participation of members of the research team who had intellectual disabilities. Reasonable adjustments (such as redesigning forms) were made to the processes involved in securing ethical approval. This study demonstrated that it is possible to ensure that ethical standards are upheld and the requirements of ethics committees met whilst also facilitating the meaningful involvement of people with intellectual disabilities. The reasonable adjustments approach explored within this paper can be translated into the context of clinical practice: making changes to the way that services are delivered can promote greater involvement of people with intellectual disabilities in their own health care. © 2014 John Wiley & Sons Ltd.

  10. Gestational age at birth and risk of intellectual disability without a common genetic cause.

    Science.gov (United States)

    Heuvelman, Hein; Abel, Kathryn; Wicks, Susanne; Gardner, Renee; Johnstone, Edward; Lee, Brian; Magnusson, Cecilia; Dalman, Christina; Rai, Dheeraj

    2017-12-06

    Preterm birth is linked to intellectual disability and there is evidence to suggest post-term birth may also incur risk. However, these associations have not yet been investigated in the absence of common genetic causes of intellectual disability, where risk associated with late delivery may be preventable. We therefore aimed to examine risk of intellectual disability without a common genetic cause across the entire range of gestation, using a matched-sibling design to account for unmeasured confounding by shared familial factors. We conducted a population-based retrospective study using data from the Stockholm Youth Cohort (n = 499,621) and examined associations in a nested cohort of matched outcome-discordant siblings (n = 8034). Risk of intellectual disability was greatest among those born extremely early (adjusted OR 24 weeks  = 14.54 [95% CI 11.46-18.44]), lessening with advancing gestational age toward term (aOR 32 weeks  = 3.59 [3.22-4.01]; aOR 37 weeks  = 1.50 [1.38-1.63]); aOR 38 weeks  = 1.26 [1.16-1.37]; aOR 39 weeks = 1.10 [1.04-1.17]) and increasing with advancing gestational age post-term (aOR 42 weeks  = 1.16 [1.08-1.25]; aOR 43 weeks  = 1.41 [1.21-1.64]; aOR 44 weeks  = 1.71 [1.34-2.18]; aOR 45 weeks  = 2.07 [1.47-2.92]). Associations persisted in a cohort of matched siblings suggesting they were robust against confounding by shared familial traits. Risk of intellectual disability was greatest among children showing evidence of fetal growth restriction, especially when birth occurred before or after term. Birth at non-optimal gestational duration may be linked causally with greater risk of intellectual disability. The mechanisms underlying these associations need to be elucidated as they are relevant to clinical practice concerning elective delivery around term and mitigation of risk in post-term children.

  11. A feasibility study of behavioural activation for depressive symptoms in adults with intellectual disabilities.

    Science.gov (United States)

    Jahoda, A; Melville, C A; Pert, C; Cooper, S-A; Lynn, H; Williams, C; Davidson, C

    2015-11-01

    Important work has been carried out adapting cognitive behavioural therapy for people with intellectual disabilities. However, there is a lack of alternative psychological therapies available for people with intellectual disabilities and emotional difficulties. Behavioural activation for depression is less reliant on verbal communication and focuses on increasing purposeful activity and reducing avoidance. This feasibility study involved the development and piloting of an adapted manual of behavioural activation for people with intellectual disabilities. The intervention consisted of 10-12 sessions and a key adaptation was that the therapist worked with the clients alongside a significant other in their life, either a paid carer or family member. Baseline, post-intervention (3 months after entering the study) and 6-month quantitative follow-up data were obtained. Primary outcome data were gathered, concerning depressive symptoms, participants' levels of activity and general well-being. Twenty-three adults with intellectual disabilities with symptoms of depression were recruited from specialist health services. In terms of acceptability, the behavioural activation intervention was well received and only two individuals dropped out, with a further two lost to follow-up. The main measures of depression appeared to be sensitive to change. Pre- to post-intervention data showed a significant reduction in self-report of depressive symptoms with a strong effect size (r = 0.78), that was maintained at follow-up (r = 0.86). Positive change was also obtained for informant reports of depressive symptoms from pre- to post-intervention, with a strong effect size (r = 0.7). Once again, this positive change was maintained at follow-up (r = 0.72). The study suggested that behavioural activation may be a feasible and worthwhile approach to tackling depression in people with intellectual disabilities. However, a randomised controlled trial would be required to establish its

  12. Recruitment to Intellectual Disability Research: A Qualitative Study

    Science.gov (United States)

    Nicholson, L.; Colyer, M.; Cooper, S. -A.

    2013-01-01

    Background: Difficulties in the recruitment of adults with intellectual disability (ID) to research studies are well described but little studied. The aim of this study was to investigate the difficulties in recruiting to a specific research project, in order to inform future recruitment to ID research. Methods: Individual semi-structured…

  13. Dysfluencies in the speech of adults with intellectual disabilities and reported speech difficulties.

    Science.gov (United States)

    Coppens-Hofman, Marjolein C; Terband, Hayo R; Maassen, Ben A M; van Schrojenstein Lantman-De Valk, Henny M J; van Zaalen-op't Hof, Yvonne; Snik, Ad F M

    2013-01-01

    In individuals with an intellectual disability, speech dysfluencies are more common than in the general population. In clinical practice, these fluency disorders are generally diagnosed and treated as stuttering rather than cluttering. To characterise the type of dysfluencies in adults with intellectual disabilities and reported speech difficulties with an emphasis on manifestations of stuttering and cluttering, which distinction is to help optimise treatment aimed at improving fluency and intelligibility. The dysfluencies in the spontaneous speech of 28 adults (18-40 years; 16 men) with mild and moderate intellectual disabilities (IQs 40-70), who were characterised as poorly intelligible by their caregivers, were analysed using the speech norms for typically developing adults and children. The speakers were subsequently assigned to different diagnostic categories by relating their resulting dysfluency profiles to mean articulatory rate and articulatory rate variability. Twenty-two (75%) of the participants showed clinically significant dysfluencies, of which 21% were classified as cluttering, 29% as cluttering-stuttering and 25% as clear cluttering at normal articulatory rate. The characteristic pattern of stuttering did not occur. The dysfluencies in the speech of adults with intellectual disabilities and poor intelligibility show patterns that are specific for this population. Together, the results suggest that in this specific group of dysfluent speakers interventions should be aimed at cluttering rather than stuttering. The reader will be able to (1) describe patterns of dysfluencies in the speech of adults with intellectual disabilities that are specific for this group of people, (2) explain that a high rate of dysfluencies in speech is potentially a major determiner of poor intelligibility in adults with ID and (3) describe suggestions for intervention focusing on cluttering rather than stuttering in dysfluent speakers with ID. Copyright © 2013 Elsevier Inc

  14. Developing Reception Competence in Children with a Mild Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Ana Koritnik

    2015-06-01

    Full Text Available The paper presents research paradigms which study factors that allow influencing the language development of children with mild intellectual disabilities to the greatest extent possible. Special attention is dedicated to the development of the reception competence with the use of reception didactics methods based on a relatively frequent use of less demanding non-language semiotic functions. The core of the paper presents results of an experimental case study (on a sample of five children with a mild intellectual disability over a one school year period, through which the reception competence in these children was developed with a systematic use of an adapted communication model of literary education as an experimental factor. The results have confirmed the initially set hypothesis about reception progress.

  15. The effects of rehabilitation on intellectually-disabled people - a ...

    African Journals Online (AJOL)

    Background: Rehabilitation has emerged as a comprehensive approach to addressing intellectually-disabled peoples' skill deficits, improving competencies and facilitating optimal functioning in order to provide the greatest possible measure of social and economic participation, self-reliance and independence. Objective: ...

  16. A narrative review of acute care nurses' experiences nursing patients with intellectual disability: underprepared, communication barriers and ambiguity about the role of caregivers.

    Science.gov (United States)

    Lewis, Peter; Gaffney, Ryan J; Wilson, Nathan J

    2017-06-01

    To describe how nurses experience caring for people with intellectual disability in an acute care setting. Recent advances in the care of people with intellectual disability in hospital are primarily based upon the experiences of people with intellectual disability and their caregivers. Little is known about the experiences of registered nurses caring for people with intellectual disability, yet the experiences of nurses in delivering care largely determine the quality of care experienced by people with intellectual disability and their caregivers. A narrative literature review using electronic database searches was conducted using variants of the terms disability, nursing and acute care. Through our reading of the recent literature describing the experiences of nurses caring for people with intellectual disability in an acute care setting, we have identified three themes: (1) nurses feel underprepared when caring for patients with intellectual disability, (2) nurses experience challenges when communicating with people with intellectual disability and (3) nurses have ambiguous expectations of paid and unpaid caregivers. The enablers of and barriers to the delivery of nursing care in acute care settings need to be made explicit and researchers and nurses need to collaborate in the development, implementation and evaluation of care delivery strategies. Nurses need to be adequately prepared to care for people with intellectual disability. Preparation should include dealing with the complexities of communicating with people with intellectual disability and practical experience of doing so in clinical and educational environments that ensure the safety and dignity of nurses and people with intellectual disability. Nurses need supportive strategies for developing therapeutic relationships with a range of informal and formal caregivers. © 2016 The Authors. Journal of Clinical Nursing Published by John Wiley & Sons Ltd.

  17. Self-reported care needs of Dutch homeless people with and without a suspected intellectual disability: a 1.5-year follow-up study.

    Science.gov (United States)

    Van Straaten, Barbara; Rodenburg, Gerda; Van der Laan, Jorien; Boersma, Sandra N; Wolf, Judith R L M; Van de Mheen, Dike

    2017-01-01

    Cognitive impairment is a prevalent problem among the homeless and seems related to more psychosocial problems. However, little is known about the care needs of the subgroup of homeless people with an intellectual disability compared to those without an intellectual disability and how their care needs develop over time. This study explores self-reported care needs within a broad range of life domains among Dutch homeless people with and without a suspected intellectual disability to gain insight into the transition of self-reported care needs from baseline to follow-up in both subgroups. This longitudinal study is part of a cohort study among homeless people who had been accepted for an individual programme plan in four major Dutch cities. The initial cohort consisted of 513 participants who were interviewed in 2011. At 1.5-year follow-up, 336 participants (65.5%) were also interviewed and screened for intellectual disability. Of these participants, 31% (95% CI 26.2-36.1) had a suspected intellectual disability. For both groups, between baseline and follow-up, the number of 'unmet care needs' decreased significantly and the number of 'no care needs' increased significantly, while at follow-up, participants with a suspected intellectual disability reported 'no care needs' on significantly fewer life domains than those without a suspected intellectual disability (mean numbers 16.4 vs. 17.5). Between baseline and follow-up, 'met care needs' decreased significantly on housing for both groups, and increased on finances and dental care for participants with a suspected intellectual disability. At follow-up, participants with a suspected intellectual disability more often preferred housing support available by appointment than those without a suspected intellectual disability. These findings suggest that homeless people who had been accepted for an individual programme plan with a suspected intellectual disability have care needs for a longer period of time than those

  18. Predictors of Work Participation of Young Adults with Mild Intellectual Disabilities

    Science.gov (United States)

    Holwerda, Anja; van der Klink, Jac J. L.; de Boer, Michiel R.; Groothoff, Johan W.; Brouwer, Sandra

    2013-01-01

    Individuals with intellectual disabilities (ID) are three to four times less often employed compared to their non-disabled peers. Evidence for factors associated with work participation of young adults with ID is limited. Furthermore, studies on predictors for sustainable work participation among young adults with ID is lacking altogether.…

  19. Psychiatric Services for Individuals with Intellectual and Developmental Disabilities: Medication Management

    Science.gov (United States)

    Russell, Andrew T.; Hahn, Joan Earle; Hayward, Katharine

    2011-01-01

    The purpose of this study was to describe the medication management and treatment provided in a specialty outpatient psychiatry clinic for 198 community-residing children and adults with intellectual disability and other developmental disabilities (IDD) referred to the clinic and discharged between 1999 and 2008. Using a descriptive design, data…

  20. Searching Nearest Potential of Children with Intellectual Disability – Dynamic Assessment

    Directory of Open Access Journals (Sweden)

    Kulesza Ewa Maria

    2015-08-01

    Full Text Available The article discussed the issue of the diagnosis with the use of task-support-task procedure. A theoretical model of diagnosis based on the concepts by L. S. Vygotski, R. Case, and A. Bandura was described and developed. The model was tested on a group of non-disabled preschool children, and children with mild and moderate intellectual disability who were paired up accordingly to their mental age. Each pair was given a set of developmentally adapted tasks. The tool (44 tasks was reliable and valid. The task-support-task procedure significantly affected the level of the task performance in all the children and allowed to define the scope of potential abilities, especially in the children with mild and moderate intellectual disabilities. Most of the task they did fell into the zone of proximal development.

  1. Assessing Character Strengths in Youth with Intellectual Disability: Reliability and Factorial Validity of the VIA-Youth

    Science.gov (United States)

    Shogren, Karrie A.; Shaw, Leslie A.; Raley, Sheida K.; Wehmeyer, Michael L.; Niemiec, Ryan M.; Adkins, Megan

    2018-01-01

    This article reports the results of an examination of the endorsement, reliability, and factorial validity of the VIA--Youth and assessment of character strengths and virtues developed for the general population in youth with and without intellectual disability. Findings suggest that, generally, youth with intellectual disability endorsed…

  2. Advances in understanding – genetic basis of intellectual disability [version 1; referees: 2 approved

    Directory of Open Access Journals (Sweden)

    Pietro Chiurazzi

    2016-04-01

    Full Text Available Intellectual disability is the most common developmental disorder characterized by a congenital limitation in intellectual functioning and adaptive behavior. It often co-occurs with other mental conditions like attention deficit/hyperactivity disorder and autism spectrum disorder, and can be part of a malformation syndrome that affects other organs. Considering the heterogeneity of its causes (environmental and genetic, its frequency worldwide varies greatly. This review focuses on known genes underlying (syndromic and non-syndromic intellectual disability, it provides a succinct analysis of their Gene Ontology, and it suggests the use of transcriptional profiling for the prioritization of candidate genes.

  3. Family Caregivers' Perspectives on Barriers and Facilitators of Cervical and Breast Cancer Screening for Women with Intellectual Disability

    Science.gov (United States)

    Swaine, Jamie G.; Dababnah, Sarah; Parish, Susan L.; Luken, Karen

    2013-01-01

    Women with intellectual disability do not receive cervical and breast cancer screening at the same number as women without disabilities. Numerous barriers to receipt of screening have been reported by individuals with intellectual disability, paid caregivers, nurses, and other medical professionals. This study utilized semi-structured qualitative…

  4. Systematic review of restraint interventions for challenging behaviour among persons with intellectual disabilities: focus on experiences.

    Science.gov (United States)

    Heyvaert, Mieke; Saenen, Lore; Maes, Bea; Onghena, Patrick

    2015-03-01

    This article is the second in a two-part series. Heyvaert et al. focused on the effectiveness of restraint interventions (RIs) for reducing challenging behaviour among persons with intellectual disabilities) in the first article. In this second article, Heyvaert et al. focus on experiences with RIs for challenging behaviour among people with intellectual disabilities. A mixed methods research synthesis involving statistical meta-analysis and qualitative meta-synthesis techniques was applied to synthesize 76 retrieved articles. This second article reports on the qualitative meta-synthesis of 17 articles on experiences with RIs for challenging behaviour among people with intellectual disabilities. The 17 included articles report on important variables relating to the persons receiving RIs, to the persons giving RIs and to their interactions and relationship, as well as variables situated at the meso- and macro-level. The developed model can assist in reflecting on and improving of current RI practices among people with intellectual disabilities. © 2014 John Wiley & Sons Ltd.

  5. Older and Younger Family Caregivers of Adults with Intellectual Disability: Factors Associated with Future Plans

    Science.gov (United States)

    Chou, Yueh-Ching; Lee, Yue-Chune; Lin, Li-Chan; Kroger, Teppo; Chang, Ai-Ning

    2009-01-01

    A structured interview survey was conducted in a major city in Taiwan to explore and compare older and younger family primary caregivers' well being and their future caregiving plans for these adults with intellectual disability. The sample size was 315 caregivers who were 55 years or older and who cared for adults with intellectual disability and…

  6. Job satisfaction of people with intellectual disabilities: the role of basic psychological need fulfillment and workplace participation.

    Science.gov (United States)

    Akkerman, Alma; Kef, Sabina; Meininger, Herman P

    2018-05-01

    Knowledge on what contributes to job satisfaction of people with intellectual disabilities is limited. Using self-determination theory, we investigated whether fulfillment of basic psychological needs (i.e., autonomy, relatedness, competence) affected job satisfaction, and explored associations between workplace participation, need fulfillment and job satisfaction. A total of 117 persons with intellectual disabilities, recruited from a Dutch care organization, were interviewed on need fulfillment at work and job satisfaction. Data on workplace participation was obtained from staff. Questionnaires were based on well-established instruments. Basic psychological need fulfillment predicted higher levels of job satisfaction. Level of workplace participation was not associated with need fulfillment or job satisfaction. Allowing workers with intellectual disabilities to act with a sense of volition, feel effective, able to meet challenges, and connected to others is essential and contributes to job satisfaction. It is needed to pay attention to this, both in selection and design of workplaces and in support style. Implications for rehabilitation Knowledge on factors that contribute to job satisfaction is necessary to improve employment situations and employment success of people with intellectual disabilities. In order to achieve job satisfaction, it is essential that workplaces allow for fulfillment of the basic psychological needs for autonomy, relatedness, and competence of people with intellectual disabilities. People with intellectual disabilities are able to report on their needs and satisfaction, and it is important that their own perspective is taken into account in decisions regarding their employment situation.

  7. Implicit Attitudes towards People with Intellectual Disabilities: Their Relationship with Explicit Attitudes, Social Distance, Emotions and Contact.

    Science.gov (United States)

    Wilson, Michelle Clare; Scior, Katrina

    2015-01-01

    Implicit attitude research has expanded rapidly over the last decade and is seen as very promising as it counters biases present in much attitude research such as social desirability. However, most research in the area of intellectual disabilities has focused on explicit attitudes alone. This study examined implicit attitudes to this population and also examined their association with emotional reactions and contact, which have previously been found to have a significant influence on attitudes and stigma. A web based survey consisting of a single target Implicit Association Test, measures of explicit attitudes, social distance, and emotional reactions towards and contact with individuals with intellectual disabilities was completed by 326 adult UK residents. Implicit attitudes were not significantly associated with explicit attitudes, social distance or emotional reactions. Instead there were small to moderate associations between emotional reactions and explicit attitudes and social distance. Implicit attitudes did not vary according to participants' level of contact with individuals with intellectual disabilities, type of the contact relationship (voluntary versus involuntary), gender or educational attainment. In contrast, these participant characteristics did affect explicit attitudes and social distance. Implicit attitudes towards individuals with intellectual disabilities were somewhat negative and, unlike explicit attitudes and stigma, did not vary according to participant demographics or contact. As they may have a negative impact on the lives of people with intellectual disabilities, implicit attitudes merit increased attention in research and interventions in the intellectual disabilities field.

  8. Implicit Attitudes towards People with Intellectual Disabilities: Their Relationship with Explicit Attitudes, Social Distance, Emotions and Contact.

    Directory of Open Access Journals (Sweden)

    Michelle Clare Wilson

    Full Text Available Implicit attitude research has expanded rapidly over the last decade and is seen as very promising as it counters biases present in much attitude research such as social desirability. However, most research in the area of intellectual disabilities has focused on explicit attitudes alone. This study examined implicit attitudes to this population and also examined their association with emotional reactions and contact, which have previously been found to have a significant influence on attitudes and stigma. A web based survey consisting of a single target Implicit Association Test, measures of explicit attitudes, social distance, and emotional reactions towards and contact with individuals with intellectual disabilities was completed by 326 adult UK residents. Implicit attitudes were not significantly associated with explicit attitudes, social distance or emotional reactions. Instead there were small to moderate associations between emotional reactions and explicit attitudes and social distance. Implicit attitudes did not vary according to participants' level of contact with individuals with intellectual disabilities, type of the contact relationship (voluntary versus involuntary, gender or educational attainment. In contrast, these participant characteristics did affect explicit attitudes and social distance. Implicit attitudes towards individuals with intellectual disabilities were somewhat negative and, unlike explicit attitudes and stigma, did not vary according to participant demographics or contact. As they may have a negative impact on the lives of people with intellectual disabilities, implicit attitudes merit increased attention in research and interventions in the intellectual disabilities field.

  9. Refinement of the deletion in 8q22.2-q22.3: the minimum deletion size at 8q22.3 related to intellectual disability and epilepsy.

    Science.gov (United States)

    Kuroda, Yukiko; Ohashi, Ikuko; Saito, Toshiyuki; Nagai, Jun-ichi; Ida, Kazumi; Naruto, Takuya; Iai, Mizue; Kurosawa, Kenji

    2014-08-01

    Kuechler et al. [2011] reported five patients with interstitial deletions in 8q22.2-q22.3 who had intellectual disability, epilepsy, and dysmorphic features. We report on a new patient with the smallest overlapping de novo deletion in 8q22.3 and refined the phenotype. The proposita was an 8-year-old girl, who developed seizures at 10 months, and her epileptic seizure became severe and difficult to control with antiepileptic drugs. She also exhibited developmental delay and walked alone at 24 months. She was referred to us for evaluation for developmental delay and epilepsy at the age of 8 years. She had intellectual disability (IQ 37 at 7 years) and autistic behavior, and spoke two word sentences at 8 years. She had mild dysmorphic features, including telecanthus and thick vermilion of the lips. Array comparative genomic hybridization detected a 1.36 Mb deletion in 8q22.3 that encompassed RRM2B and NCALD, which encode the small subunit of p53-inducible ribonucleotide reductase and neurocalcin delta in the neuronal calcium sensor family of calcium-binding proteins, respectively. The minimum overlapping region between the present and previously reported patients is considered to be a critical region for the phenotype of the deletion in 8q22.3. We suggest that the deletion in 8q22.3 may represent a clinically recognizable condition, which is characterized by intellectual disability and epilepsy. © 2014 Wiley Periodicals, Inc.

  10. A systematic review of interventions aiming to improve involvement in physical activity among adults with intellectual disability.

    Science.gov (United States)

    Brooker, Katie; van Dooren, Kate; McPherson, Lyn; Lennox, Nick; Ware, Robert

    2015-03-01

    Evidence suggests that most adults with intellectual disability do not participate in sufficient amounts of physical activity (PA). A systematic review of peer-reviewed studies that reported an intervention aiming to improve PA levels of adults with intellectual disability was conducted. Keywords related to intellectual disability and physical activity were used to search relevant databases. Studies were excluded if they did not measure PA as an outcome for adults with intellectual disability, were non-English, and were not peer-reviewed. All relevant studies were included in the review regardless of methodological quality and design. Six articles met the inclusion criteria. These included health education or health promotion programs with PA, nutrition, and weight loss components. The quality of studies included in this review was generally poor. Most studies used a prepost design, sample sizes were small, and measurement tools were used that are not valid and reliable for the population assessed. PA interventions have the potential to improve the health and wellbeing of people with intellectual disability, a vulnerable group who require attention from public health practitioners and researchers. Given the health inequities that exist, public health researchers should target efforts to improve PA levels among this group.

  11. Needs of Persons with Severe Intellectual Disabilities: A Q-Methodological Study of Clients with Severe Behavioural Disorders and Severe Intellectual Disabilities

    Science.gov (United States)

    Kreuger, Linda; van Exel, Job; Nieboer, Anna

    2008-01-01

    Background: A demand-oriented approach is becoming increasingly important in care provision. The purpose of this study was to identify the primary needs of clients with Severe Behavioural Disorders and Severe Intellectual Disabilities. Materials and Methods: We used the theory of Social Production Function and Maslow's hierarchy of needs to…

  12. THE EFFECT OF BOWLING GAME TOWARD NUMERACY SKILLS FOR INTELLECTUAL DISABILITY STUDENT

    Directory of Open Access Journals (Sweden)

    Putri Dwi Sari

    2016-12-01

    Full Text Available Intellectual disability students experience difficulties in the learning process, especially on the material arithmeti coperation. It was caused by to the intellectual development hampered by the limitations of IQ and final stage of operational phases of the students turn from abstract to the concrete. The research design used in this study was the Single Subject Research (SSR, with ABA design models and use measuring units scores. The subjects was intellectual disability students the fifth grade in SDLB Idayu II Malang. Data collection techniques was written tests. Research revealed a effect of the use of the bowling game to increaser eduction numeracy skills as the target behavior. Advice for school and the teacher can provide methods and learning media in accordance with the needs and characteristics of students..

  13. Invisible victims. Analysis of a case of abuse from the perspective of the victim with intellectual disability

    Directory of Open Access Journals (Sweden)

    Belén GUTIÉRREZ-BERMEJO

    2017-09-01

    Full Text Available This article aims to analyze the experience of abuse by a person with intellectual disability. For this purpose, a semi-structured interview was recorded, transcribed and analyzed according to the existing scientific literature. The results show the emotional impact of the abuse experience on the victim. It also identifies false myths in relation to the emotional experience of people with intellectual disabilities and provides psychological explanations for the actions of the different people involved in the aggressions. The plurality of abuse situations which the victim may face, as well as the permanence of abuse over the years, define a common characteristic in the maltreatment of individuals with intellectual disabilities. Understanding all the dynamics that can lead to abuse in people with intellectual disabilities provides a new perspective in the assessment and intervention with these victims.

  14. Novel SACS mutations associated with intellectual disability, epilepsy and widespread supratentorial abnormalities.

    Science.gov (United States)

    Ali, Zafar; Klar, Joakim; Jameel, Mohammad; Khan, Kamal; Fatima, Ambrin; Raininko, Raili; Baig, Shahid; Dahl, Niklas

    2016-12-15

    We describe eight subjects from two consanguineous families segregating with autosomal recessive childhood onset spastic ataxia, peripheral neuropathy and intellectual disability. The degree of intellectual disability varied from mild to severe and all four affected individuals in one family developed aggressive behavior and epilepsy. Using exome sequencing, we identified two novel truncating mutations (c.2656C>T (p.Gln886*)) and (c.4756_4760delAATCA (p.Asn1586Tyrfs*3)) in the SACS gene responsible for autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS). MRI revealed typical cerebellar and pontine changes associated with ARSACS as well as multiple supratentorial changes in both families as likely contributing factors to the cognitive symptoms. Intellectual disability and behavioral abnormalities have been reported in some cases of ARSACS but are not a part of the characteristic triad of symptoms that includes cerebellar ataxia, spasticity and peripheral neuropathy. Our combined findings bring further knowledge to the phenotypic spectrum, neurodegenerative changes and genetic variability associated with the SACS gene of clinical and diagnostic importance. Copyright © 2016. Published by Elsevier B.V.

  15. ADHD Symptoms in Children with Mild Intellectual Disability

    Science.gov (United States)

    Simonoff, Emily; Pickles, Andrew; Wood, Nicky; Gringras, Paul; Chadwick, Oliver

    2007-01-01

    Objectives: To determine whether the nature and correlates of attention-deficit/hyperactivity disorder (ADHD) symptoms are different in subjects with mild intellectual disability (ID) compared to subjects with average ability. Method: From a general population sample of 2,726 12- to 15-year-olds, a stratified subsample was selected to enrich for…

  16. Including People with Intellectual Disabilities in Qualitative Research

    Science.gov (United States)

    Hall, Sarah A.

    2013-01-01

    The voice of people with intellectual disabilities (ID) is needed in the literature to best understand their unique experiences and perspectives. Researchers face challenges in conducting interviews with people with ID who are limited in conceptual and verbal language skills. It can also be difficult to obtain participants with ID because of…

  17. Transition for Teenagers with Intellectual Disability: Carers' Perspectives

    Science.gov (United States)

    Bhaumik, Sabyasachi; Watson, Joanna; Barrett, Mary; Raju, Bala; Burton, Tracey; Forte, Jane

    2011-01-01

    Teenagers with intellectual disabilities (ID) have significantly more health problems than the rest of the population and many encounter difficulties accessing the services they need during the transition from children's to adult services. A multidisciplinary, interagency study was carried out in one area of the UK with the intent to estimate the…

  18. Fruit and Vegetable Consumption among Special School Students with Mild Intellectual Disability in Hong Kong.

    Science.gov (United States)

    Mok, W K; Ling, T K

    2016-08-01

    The aim of this study was to predict the fruit and vegetable consumption intention of students with mild intellectual disability in Hong Kong by the application of Ajzen's Theory of Planned Behaviour. 50 students with mild intellectual disability (30 male and 20 female), ranging in age from 15 to 38 years, were participated in this study. By means of face-to-face interviews, demographic data, Food Preference and variables of Theory of Planned Behaviour, such as Attitude, Subjective Norm and Perceived Behavioural Control were measured. 20%, 28% and 10% students with mild intellectual disability were rated to be overweight, obese and severely obese respectively. The rest of 10% were classified to be underweight. Regarding the daily intake of fruit and vegetable, 96% students with mild intellectual disability failed to consume sufficient amount. The variables of Theory of Planned Behaviour explained 47.7% of fruit and vegetable consumption intention with significant factors of Attitude, Subjective Norm and Perceived Behavioural Control. Food Preference was found to be a useful construct and further improve the prediction by about 7% after incorporating into the model. Results of this study indicated that Theory of Planned Behaviour is a useful model to predict dietary intention of students with mild intellectual disability in Hong Kong. Food Preference was a significant predictor to model the intention of fruit and vegetable consumption among students other than Attitude, Subjective Norm and Perceived Behavioural Control.

  19. Mainstream Students' Attitudes to Possible Inclusion in Unified Sports with Students Who Have an Intellectual Disability

    Science.gov (United States)

    Townsend, Michael; Hassall, John

    2007-01-01

    Background: Schools in New Zealand do not normally include students with intellectual disability in their sports programmes. This study examined regular students' attitudes towards the possible inclusion of students with an intellectual disability in an integrated sports programme within their school. Materials and Methods: A total of 170 school…

  20. Symbol Labelling Improves Advantageous Decision-Making on the Iowa Gambling Task in People with Intellectual Disabilities

    Science.gov (United States)

    Dymond, Simon; Bailey, Rebecca; Willner, Paul; Parry, Rhonwen

    2010-01-01

    Individuals with intellectual and developmental disabilities often have difficulties foregoing short-term loss for long-term gain. The Iowa Gambling Task (IGT) has been extensively adopted as a laboratory measure of this ability. In the present study, we undertook the first investigation with people with intellectual disabilities using a…

  1. Healthy Lifestyles for Adults with Intellectual Disability: Knowledge, Barriers, and Facilitators

    Science.gov (United States)

    Caton, Sue; Chadwick, Darren; Chapman, Melanie; Turnbull, Sue; Mitchell, Duncan; Stansfield, Jois

    2012-01-01

    Background: People with intellectual disability (ID) are more likely to have health problems than people without disability. Little previous research has investigated health from the perspective of the people with ID themselves. We aimed to focus on what people with ID understand being healthy to mean and what their experiences are of healthy…

  2. Retreat and Resilience: Life Experiences of Older Women with Intellectual Disabilities

    Science.gov (United States)

    Leroy, Barbara W.; Walsh, Patricia Noonan; Kulik, Noel; Rooney, Margaret

    2004-01-01

    Older women with intellectual disabilities remain the least studied and understood members of the disability population, and yet they often live well into late adulthood. In this exploratory study we used extensive interviews to examine the demographics, economic and personal safety nets, health, social roles, and well-being of 29 Irish and…

  3. A mixed methods study to develop and pilot a competency assessment tool to support midwifery care of women with intellectual disabilities.

    Science.gov (United States)

    Beake, Sarah; Clark, Louise L; Turner, Toni; Bick, Debra

    2013-08-01

    Recent reports have highlighted the poor quality of health care received by people with intellectual disabilities (otherwise known as 'learning disabilities') in the United Kingdom (UK). UK Confidential Enquiries into maternal deaths have highlighted adverse pregnancy outcomes for women with intellectual disabilities and need for timely and appropriate clinical care. To develop and test a competency assessment tool to support midwifery care of women with intellectual disabilities. A mixed methods study. Large inner city maternity unit. Midwives and key experts in intellectual disabilities, maternity policy and midwifery education. Phase one comprised a systematic narrative review of the literature. Evidence identified informed phase two which included focus groups and interviews. Emergent themes informed the development of a competency assessment tool which was piloted in phase three. Phase one: Four primary research papers and two systematic reviews met the review inclusion criteria. Support to develop parenting skills of women with intellectual disabilities was highlighted as was the need to optimise organisation of maternity services. No studies specifically considered midwifery competencies to support women with intellectual disabilities. Phase two: 23 midwives attended three focus groups and individual interviews were conducted with national leaders in intellectual disability (n=6) and midwifery policy and education (n=7). Themes identified included need for individualised care provided by a known midwife, the importance of effective communication skills and need for clear knowledge and understanding of the legislative framework relevant to intellectual disability. Phase three: A convenience sample of 60 midwives was asked to participate in a pilot study to test the tool, 46 (77%) of whom responded. Thirty midwives (65%) felt competent in their ability to recognise intellectual disability and 37 (80%) competent or expert in understanding women have the right

  4. Aggression as Positive Reinforcement in People with Intellectual Disabilities

    Science.gov (United States)

    May, Michael E.

    2011-01-01

    From an applied behavior-analytic perspective, aggression in people with intellectual disabilities is mostly maintained by social reinforcement consequences. However, nonsocial consequences have also been identified in functional assessments on aggression. Behaviors producing their own reinforcement have been labeled "automatic" or "nonsocial" in…

  5. Parenting of children with borderline to mild intellectual disability

    NARCIS (Netherlands)

    Kleefman, Marijke

    2015-01-01

    Raising children with borderline to mild intellectual disability (BMID) may cause parenting stress, especially when the child with BMID has psychosocial problems. To improve support, it is important to have a better understanding of the effectiveness of interventions to reduce problems in raising

  6. Symbol labelling improves advantageous decision-making on the Iowa Gambling Task in people with intellectual disabilities.

    Science.gov (United States)

    Dymond, Simon; Bailey, Rebecca; Willner, Paul; Parry, Rhonwen

    2010-01-01

    Individuals with intellectual and developmental disabilities often have difficulties foregoing short-term loss for long-term gain. The Iowa Gambling Task (IGT) has been extensively adopted as a laboratory measure of this ability. In the present study, we undertook the first investigation with people with intellectual disabilities using a two-choice child version of the IGT, with measures of intellectual and executive functioning. Compared to a group of matched controls, people with intellectual disabilities performed advantageously and showed high levels of subjective awareness about the relative goodness and badness of the decks. A symbol labelling intervention, in which participants were taught to label the good and bad decks at regular intervals significantly improved advantageous decision-making to levels approximating that of controls. Factor analysis of executive functioning scores identified working memory and mental flexibility (response initiation and set shifting), with a near-significant inverse correlation between the extent to which the intervention was required and mental flexibility. These findings show, for the first time, that people with intellectual disabilities are capable of performing advantageously on the IGT and add to the growing clinical literature on decision-making. Copyright 2009 Elsevier Ltd. All rights reserved.

  7. Long contiguous stretches of homozygosity spanning shortly the imprinted loci are associated with intellectual disability, autism and/or epilepsy.

    Science.gov (United States)

    Iourov, Ivan Y; Vorsanova, Svetlana G; Korostelev, Sergei A; Zelenova, Maria A; Yurov, Yuri B

    2015-01-01

    Long contiguous stretches of homozygosity (LCSH) (regions/runs of homozygosity) are repeatedly detected by single-nucleotide polymorphism (SNP) chromosomal microarrays. Providing important clues regarding parental relatedness (consanguinity), uniparental disomy, chromosomal recombination or rearrangements, LCSH are rarely considered as a possible epigenetic cause of neurodevelopmental disorders. Additionally, despite being relevant to imprinting, LCSH at imprinted loci have not been truly addressed in terms of pathogenicity. In this study, we examined LCSH in children with unexplained intellectual disability, autism, congenital malformations and/or epilepsy focusing on chromosomal regions which harbor imprinted disease genes. Out of 267 cases, 14 (5.2 %) were found to have LCSH at imprinted loci associated with a clinical outcome. There were 5 cases of LCSH at 15p11.2, 4 cases of LCSH at 7q31.2, 3 cases of LCSH at 11p15.5, and 2 cases of LCSH at 7q21.3. Apart from a case of LCSH at 7q31.33q32.3 (~4 Mb in size), all causative LCSH were 1-1.5 Mb in size. Clinically, these cases were characterized by a weak resemblance to corresponding imprinting diseases (i.e., Silver-Russell, Beckwith-Wiedemann, and Prader-Willi/Angelman syndromes), exhibiting distinctive intellectual disability, autistic behavior, developmental delay, seizures and/or facial dysmorphisms. Parental consanguinity was detected in 8 cases (3 %), and these cases did not exhibit LCSH at imprinted loci. This study demonstrates that shorter LCSH at chromosomes 7q21.3, 7q31.2, 11p15.5, and 15p11.2 occur with a frequency of about 5 % in the children with intellectual disability, autism, congenital malformations and/or epilepsy. Consequently, this type of epigenetic mutations appears to be the most common one among children with neurodevelopmental diseases. Finally, since LCSH less than 2.5-10 Mb in size are generally ignored in diagnostic SNP microarray studies, one can conclude that an important

  8. The prevalence of low self-esteem in an intellectually disabled forensic population.

    Science.gov (United States)

    Johnson, P

    2012-03-01

    This was a quantitative study to measure the prevalence low self-esteem in an intellectually disabled forensic population. The dependent variables used were the adapted six-item Rosenberg Self-Esteem Scale and the adapted Evaluative Beliefs Scale. It had a repeated measures design with independent variables including consideration of differences between the low and medium secure parts of the service, the influences of types of offences and the effects of disrupted childhood attachments. Forty-four male clients, with mild to borderline intellectual disabilities, were recruited. Data were collected by one key researcher during individual research interviews using the two structured instruments to measure self-esteem. Further data were then obtained from routinely recorded clinical information held on the hospital computer system. Unexpectedly, the majority of clients scored as having moderate or high self-esteem on both self-esteem measures. There was a statistically significant positive correlation between the two scales. In all, 64% of the population studied had committed either sexual offences or fire setting offences. Contrary to expectation, those who had evidence of disrupted attachments had slightly higher self-esteem than those who had not experienced disrupted attachments. Self-esteem is a complex personal concept with many influencing factors. Cognitive behaviour therapy has a unique role in realising and overcoming negative core beliefs and feelings of low self-worth. The offence types concurred with previously noted patterns of offending within the intellectually disabled forensic population. © 2011 The Author. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

  9. Loss-of-function mutation in RUSC2 causes intellectual disability and secondary microcephaly.

    Science.gov (United States)

    Alwadei, Ali H; Benini, Ruba; Mahmoud, Adel; Alasmari, Ali; Kamsteeg, Erik-Jan; Alfadhel, Majid

    2016-12-01

    Inherited aberrancies in intracellular vesicular transport are associated with a variety of neurological and non-neurological diseases. RUSC2 is a gene found on chromosome 9p13.3 that codes for iporin, a ubiquitous protein with high expression in the brain that interacts with Rab proteins (GTPases implicated in intracellular protein trafficking). Although mutations in Rab proteins have been described as causing brain abnormalities and intellectual disability, until now no disease-causing mutations in RUSC2 have ever been reported in humans. We describe, to our knowledge for the first time, three patients with inherited homozygous nonsense mutations identified in RUSC2 on whole-exome sequencing. All three patients had central hypotonia, microcephaly, and moderate to severe intellectual disability. Two patients had additional features of early-onset epilepsy and absence of the splenium. This report adds to the ever-expanding landscape of genetic causes of intellectual disability and increases our understanding of the cellular processes underlying this important neurological entity. © 2016 Mac Keith Press.

  10. Behavioral problems in people with intellectual disability: Basic facts, incidence and risk factors

    Directory of Open Access Journals (Sweden)

    Buha Nataša

    2013-01-01

    Full Text Available In people with intellectual disabilities, behavioral problems result from the interaction of multiple risk factors of different origin, which undoubtedly indicates the importance of knowing their individual characteristics and life circumstances. Incidence, specific forms and topography of behavioral problems depend on different factors, both socio-demographic and inherent ones. Behavioral problems significantly impede acquiring new adaptive skills and have a negative influence on the interaction with the environment. Emotional and behavioral problems are a significant source of stress in children with intellectual disability, as well as their parents and professional staff. These difficulties, especially aggression and disruptiveness, have a big influence on the selection of education model, i.e. on how much the child will be involved in the educational process and the decision whether or not a person will be institutionalized. Better understanding of behavioral problems in people with intellectual disability is the basis of eliminating or reducing risk factors, as well as creating a comprehensive treatment model.

  11. Exonic deletion of OPHN1 resulting in seizures, intellectual disability, and brain malformations

    Directory of Open Access Journals (Sweden)

    Larson A

    2014-07-01

    Full Text Available Austin Larson,1 Jamie LeRoux,2 Ellen Roy Elias11Department of Pediatrics, University of Colorado Denver Anschutz Medical Campus, Aurora, CO, USA; 2Colorado Genetics Laboratory, Denver, CO, USAAbstract: We report the case of a 9-year-old boy with autism, intellectual disability, and complex partial seizures as well as cerebellar vermian hypoplasia, caudate nucleus hypoplasia, and ventriculomegaly. He was found to have a deletion within the oligophrenin 1 gene (OPHN1, affecting exons 2–5. OPHN1 mutations result in a rare but well-characterized syndrome of neuroanatomical anomalies, epilepsy, and intellectual disability. This is a novel mutation in OPHN1 that adds to the spectrum of pathogenic variants of the gene. Additionally, the case illustrates the significant benefit that patients and families can derive from a definitive genetic diagnosis, even in the absence of direct therapeutic interventions.Keywords: X-linked intellectual disability, autism, cerebellar hypoplasia, chromosomal microarray, oligophrenin 1

  12. From Social Exclusion to Supported Inclusion: Adults with Intellectual Disability Discuss Their Lived Experiences of a Structured Social Group.

    Science.gov (United States)

    Wilson, Nathan J; Jaques, Hayden; Johnson, Amanda; Brotherton, Michelle L

    2017-09-01

    People with intellectual disability often have few friends and experience social exclusion. Recognising this gap, supported social groups with the aim of inclusion and interdependence were created by a supported employment provider. Interviews were undertaken with 10 adults with intellectual disability exploring their lived experiences of a supported social group. Data were analysed using descriptive phenomenology. Two themes emerged (i) supported engagement fosters wellbeing, and (ii) developing social belonging and connectedness. Participants not only acknowledged the support that they needed to participate, but also that the social group had changed their lives in many ways. Adults with intellectual disability want to socialise, have friends and be part of their community. For this to be achieved, they recognise the need to seek some form of support. With appropriate and targeted support, adults with intellectual disability can move from social exclusion towards supported inclusion and experience richer lives. © 2016 The Authors Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.

  13. Physical Activity Levels among Adolescent and Young Adult Women and Men with and without Intellectual Disability

    Science.gov (United States)

    Sundahl, Lina; Zetterberg, Marie; Wester, Anita; Rehn, Börje; Blomqvist, Sven

    2016-01-01

    Background: As physical activity can prevent overweight and promote general health, the aim was to investigate the amount of physical activity among adolescent and young adult women and men with intellectual disability (ID), compared to age-matched control groups without intellectual disability. A further aim was to examine whether physical…

  14. Known for My Strengths: Positive Traits of Transition-Age Youth With Intellectual Disability and/or Autism

    Science.gov (United States)

    Carter, Erik W.; Boehm, Thomas L.; Biggs, Elizabeth E.; Annandale, Naomi H.; Taylor, Courtney E.; Loock, Aimee K.; Liu, Rosemary Y.

    2015-01-01

    Can young people with intellectual and developmental disabilities be known for their strengths? This mixed-method study explored the strengths of 427 youth and young adults with intellectual disability and/or autism (ages 13-21) from the vantage point of their parents. Using the Assessment Scale for Positive Character Traits-Developmental…

  15. Sources of Stress among Parents of Children with Intellectual Disabilities: A Preliminary Investigation in Saudi Arabia

    Science.gov (United States)

    Aldosari, Mubarak S.; Pufpaff, Lisa A.

    2014-01-01

    This study identified differences in sources of stress between parents of male children with intellectual disabilities in Saudi Arabia. Seventeen pairs of parents completed the Parent Stress Index (Abidin, 1995). Each pair of parents had a male child diagnosed with intellectual disability who either attended an institute for male children with…

  16. Risk of Fall for Individuals with Intellectual Disability

    Science.gov (United States)

    Chiba, Yoichi; Shimada, Atsuyoshi; Yoshida, Futoshi; Keino, Hiromi; Hasegawa, Mariko; Ikari, Hiroyuki; Miyake, Shikako; Hosokawa, Masanori

    2009-01-01

    Our aim was to identify risk factors for falling and establish a method to assess risk for falls in adults with intellectual disabilities. In a cross-sectional survey of 144 Japanese adults, we found that age, presence of epilepsy, and presence of paretic conditions were independent risk factors. The Tinetti balance and gait instrument was…

  17. Age at Death in Individuals with Intellectual Disabilities

    Science.gov (United States)

    Arvio, Maria; Salokivi, Tommi; Bjelogrlic-Laakso, Nina

    2017-01-01

    Background: We aimed to ascertain the average age at death (AD) in the intellectual disability population for each gender and compare them to those of the general population during 1970-2012. Methods: By analysing medical records, we calculated the ADs of all deceased clients (N = 1236) of two district organizations responsible for intellectual…

  18. Instructional Package of Development of Skill in Using Fine Motor of Children for Children with Intellectual Disabilities

    Science.gov (United States)

    Sangsawang, T.

    2018-02-01

    This research has the following purposes: 1) to find the efficiency of the self-learning activity set on development of skill in using fine motor of children with intellectual disabilities., 2) to compare the abilities to use the small muscles after the study more than before the study of children with intellectual disabilities, who made study with the self-learning activity on development of small muscles use., 3) to study the satisfaction of the children with intellectual disabilities using the self-learning activity on development of small muscles use. The sample groups on the research are the children with intellectual disabilities of the special education Maha Chakri Sirindhorn Provincial Nakhon Nayok Center in the school year 2016, for 7 children. The tools used on the research consist of the self-learning activity on development of small muscles use for the children with intellectual disabilities of the special, the observation form of abilities of small muscles before and after using the activity set and the observation form of satisfaction of the children with intellectual disabilities of the special towards the self-learning activity set on development of small muscles for the children with intellectual disabilities of the special. The statistics used on the research include the percentage, mean value, standard deviation and the t-test for dependent sample. From the research, it was found that the self-learning activity set on development of small muscles use for children with intellectual disabilities of the special is efficient based on the criteria in average equal to 77.78/76.51, the educational coefficient of the student after the study higher than before the study with average points before the study equal to 55.14 and S.D. value equal to 3.72. The average points after the study equal to 68.86, S.D. value equal to 2.73, t-test value before and after the study equal to 7.94, which are different significantly on statistics at the level 0.05 and the

  19. Evaluating validity and reliability of Persian version of Supports Intensity Scale in adults with intellectual disability

    Directory of Open Access Journals (Sweden)

    Shahin Soltani

    2013-12-01

    Full Text Available Background: Shifting paradigms regarding the ways to assess the support needs of people with intellectual disability in 1980 necessitates the design and development of appropriate tools more than ever. In this regard, American Association on Intellectual and Developmental Disabilities (AAIDD developed Supports Intensity Scale (SIS to respond the lack of an appropriate measurement tool. The aim of this study is the cultural adaptation and evaluation of psychometric properties of Supports Intensity Scale in adults with intellectual disability. Methods: Validity of Persian version of SIS was assessed by Content validity. The reliability of the scale was evaluated using Cronbach's alpha and test–retest reliability with a 3-week interval. In this study, the sample contained 43 adults (29 men and 14 women with intellectual disability. Results: The content of the Persian version of SIS was approved by the experts. The Cronbach's alpha reliability coefficients for the subscales ranged between 0.80 and 0.99. Also, Intraclass correlation coefficients ranged between 0.90 and 0.99 (P<0.001. Furthermore, all Pearson correlation coefficients among the SIS subscales ranged between 0.63 and 0.98 (P<0.01. Conclusion: The results of this study indicated that the validity and reliability of the equivalent Persian version of SIS for identifying pattern and required supports intensity in adults with intellectual disability is acceptable.

  20. Physical Punishment, Mental Health and Sense of Coherence among Parents of Children with Intellectual Disability in Japan

    Science.gov (United States)

    Kimura, Miyako; Yamazaki, Yoshihiko

    2016-01-01

    Background: Although sense of coherence (SOC) moderates parental stress, the relationship between SOC, parental mental health and physical punishment of children with intellectual disabilities remains uncertain. The present authors describe parental physical punishment towards children with intellectual disabilities and investigate its related…

  1. Hearing in Athletes with Intellectual Disabilities: The Need for Improved Ear Care

    Science.gov (United States)

    McCracken, W.; Lumm, J.; Laoide-Kemp, S.

    2011-01-01

    Background: The Special Olympics offer the opportunity for athletes with intellectual disabilities to participate in a range of sports at regional, national and international level. A parallel Healthy Athletes programme was introduced to ensure safety at the games but also to collect data on the health needs of those with intellectual disabilities…

  2. Comparison of patients with and without intellectual disability under ...

    African Journals Online (AJOL)

    Background and Purpose: We analyzed and retrospectively compared patients with and without intellectual disability (ID) who underwent oral surgery under general anesthesia at Istanbul University, Faculty of Dentistry, Department of General Anesthesia, between October 2012 and June 2013 with regard to the following ...

  3. Development of physical fitness in children with intellectual disabilities

    NARCIS (Netherlands)

    Hartman, Esther; Smith, J.; Westendorp, M.; Visscher, C.

    BackgroundFew studies examined the development of physical fitness in children and youth with intellectual disabilities (ID), but the developmental patterns of physical fitness are largely unknown. The first aim was to examine physical fitness of primary school children with ID, aged 8-12, and

  4. ADHD and Challenging behaviour in People with Intellectual Disability: should we screen for ADHD?

    Science.gov (United States)

    Perera, Bhathika; Courtenay, Ken

    2017-09-01

    People with Intellectual Disability (ID) have cognitive impairments that affect their level of functioning the causes of which are multiple and often unknown. Behavioural difficulties are common among people with ID. Attention Deficit Hyperactivity Disorder (ADHD) is recognised more among people with Intellectual Disability and could be a cause of problem behaviours. Screening and assessing for ADHD in people with ID is difficult because of the paucity of robust assessment tools and diagnostic criteria.

  5. The prevalence and nature of intellectual disability in Norwegian prisons.

    Science.gov (United States)

    Søndenaa, E; Rasmussen, K; Palmstierna, T; Nøttestad, J

    2008-12-01

    The objective of the study was to calculate the prevalence of inmates with intellectual disabilities (ID), and identify historical, medical and criminological characteristics of a certain impact. A random sample of 143 inmates from a Norwegian prison cross sectional sample was studied. The Hayes Ability Screening Index (HASI) was validated with the Wechsler Abbreviated Scale of Intelligence (WASI). The prevalence of inmates with ID, IQ intellectual handicap, are mostly absent in the Norwegian criminal justice system.

  6. Development and Psychometric Properties of an Assessment for Persons with Intellectual Disability--The InterRAI ID

    Science.gov (United States)

    Martin, Lynn; Hirdes, John P.; Fries, Brant E.; Smith, Trevor F.

    2007-01-01

    This paper describes the development of the interRAI-Intellectual Disability (interRAI ID), a comprehensive instrument that assesses all key domains of interest to service providers relative to a person with an intellectual disability (ID). The authors report on the reliability and validity of embedded scales for cognition, self-care, aggression,…

  7. Risk and Resilience Factors in the Mental Health and Well-Being of Women with Intellectual Disability

    Science.gov (United States)

    Conder, Jennifer Ann; Mirfin-Veitch, Brigit Frances; Gates, Sue

    2015-01-01

    Background: Women with intellectual disability are thought to be at increased risk of mental illness, yet little is known about resiliency factors supporting women's mental health. This article reports on such factors drawn from a study that aimed to address how women with intellectual disability experience their mental health and well-being.…

  8. Two females with mutations in USP9X highlight the variable expressivity of the intellectual disability syndrome.

    Science.gov (United States)

    Au, P Y B; Huang, L; Broley, S; Gallagher, L; Creede, E; Lahey, D; Ordorica, S; Mina, K; Boycott, K M; Baynam, G; Dyment, D A

    2017-07-01

    The genetic causes of intellectual disability (ID) are heterogeneous and include both chromosomal and monogenic etiologies. The X-chromosome is known to contain many ID-related genes and males show a marked predominance for intellectual disability. Here we report two females with syndromic intellectual disability. The first individual was relatively mild in her presentation with mild-moderate intellectual disability, hydronephrosis and altered pigmentation along the lines of Blaschko without additional congenital anomalies. A second female presented shortly after birth with dysmorphic facial features, post-axial polydactyly and, on follow-up assessment, demonstrated moderate intellectual disability. Chromosomal studies for Individual 1 identified an X-chromosome deletion due to a de novo pericentric inversion; the inversion breakpoint was associated with deletion of the 5'UTR of the USP9X, a gene which has been implicated in a syndromic intellectual disability affecting females. The second individual had a de novo frameshift mutation detected by whole-exome sequencing that was predicted to be deleterious, NM_001039590.2 (USP9X): c.4104_4105del (p.(Arg1368Serfs*2)). Haploinsufficiency of USP9X in females has been associated with ID and congenital malformations that include heart defects, scoliosis, dental abnormalities, anal atresia, polydactyly, Dandy Walker malformation and hypoplastic corpus callosum. The extent of the congenital malformations observed in Individual 1 was less striking than Individual 2 and other individuals previously reported in the literature, and suggests that USP9X mutations in females can have a wider spectrum of presentation than previously appreciated. Copyright © 2017 Elsevier Masson SAS. All rights reserved.

  9. A novel ALDH5A1 mutation is associated with succinic semialdehyde dehydrogenase deficiency and severe intellectual disability in an Iranian family.

    Science.gov (United States)

    Püttmann, Lucia; Stehr, Henning; Garshasbi, Masoud; Hu, Hao; Kahrizi, Kimia; Lipkowitz, Bettina; Jamali, Payman; Tzschach, Andreas; Najmabadi, Hossein; Ropers, Hans-Hilger; Musante, Luciana; Kuss, Andreas W

    2013-08-01

    Succinic semialdehyde dehydrogenase (SSADH) deficiency is a disorder of the catabolism of the neurotransmitter gamma-aminobutyric acid (GABA) with a very variable clinical phenotype ranging from mild intellectual disability to severe neurological defects. We report here on a large Iranian family with four affected patients presenting with severe intellectual disability, developmental delay and generalized tonic-clonic seizures. Molecular genetic analysis revealed a missense mutation c.901A>G (p.K301E, RefSeq number NM_001080) in ALDH5A1 co-segregating with the disease in the family. The missense mutation affects an amino acid residue that is highly conserved across the animal kingdom. Protein modeling showed that p.K301E most likely leads to a loss of NAD(+) binding and a predicted decrease in the free energy by 6.67 kcal/mol furthermore suggests a severe destabilization of the protein. In line with these in silico observations, no SSADH enzyme activity could be detected in patient lymphoblasts. Copyright © 2013 Wiley Periodicals, Inc.

  10. Self-Reported Participation in Sport/Exercise Among Adolescents and Young Adults With and Without Mild to Moderate Intellectual Disability

    OpenAIRE

    Robertson, Janet Margaret; Emerson, Eric Broughton; Baines, Susannah May Johnston; Hatton, Christopher Rowan

    2018-01-01

    Physical inactivity is a leading risk factor for mortality. Adults with intellectual disability are extremely inactive, but less is known about physical activity levels in children and youth with intellectual disability. This paper examines the participation by adolescents and young adults with and without mild to moderate intellectual disability in sport/exercise. Methods: Secondary analysis was undertaken of Next Steps, an annual panel study that followed a cohort from early adolescence int...

  11. Psychological and School Functioning of Latino Siblings of Children with Intellectual Disability

    Science.gov (United States)

    Lobato, Debra; Kao, Barbara; Plante, Wendy; Seifer, Ronald; Grullon, Edicta; Cheas, Lydia; Canino, Glorisa

    2011-01-01

    Background: Siblings of children with disabilities are at risk for internalizing psychological disorders; however, little is known about how culture influences this effect. This study examined the psychological and school functioning of Latino siblings of children with intellectual disability (ID). Methods: Participants were 100 Latino (L) and…

  12. Barriers and Enablers to Accessing Mental Health Services for People with Intellectual Disability: A Scoping Review

    Science.gov (United States)

    Whittle, Erin Louise; Fisher, Karen R.; Reppermund, Simone; Lenroot, Rhoshel; Trollor, Julian

    2018-01-01

    Background: It is well established that people with an intellectual disability have high rates of mental health problems, yet rates of uptake of services do not match need. Aim: To identify the current literature pertaining to the barriers and facilitators to access to mental health services for people with an intellectual disability. Method: A…

  13. Self Stigma in People with Intellectual Disabilities and Courtesy Stigma in Family Carers: A Systematic Review

    Science.gov (United States)

    Ali, Afia; Hassiotis, Angela; Strydom, Andre; King, Michael

    2012-01-01

    People with intellectual disability are one of the most stigmatised groups in society. Despite this, research in this area has been limited. This paper provides a review of studies examining self stigma in people with intellectual disability, and courtesy and affiliate stigma in family carers. An electronic search of studies published between 1990…

  14. Educational Outcomes for Secondary Students with Mild Intellectual Disability

    Science.gov (United States)

    Bouck, Emily C.

    2017-01-01

    Attention to the educational programming of secondary students with mild intellectual disability has declined in recent decades, although the need for the attention has not, particularly when considering the postschool outcomes of this population. This paper discusses the current state postschool outcomes and secondary education services for…

  15. Study healthy ageing and intellectual disabilities : Recruitment and design

    NARCIS (Netherlands)

    Hilgenkamp, Thessa I. M.; Bastiaanse, Luc P.; Hermans, Heidi; Penning, Corine; van Wijck, Ruud; Evenhuis, Heleen M.

    2011-01-01

    Problems encountered in epidemiologic health research in older adults with intellectual disabilities (ID) are how to recruit a large-scale sample of participants and how to measure a range of health variables in such a group. This cross-sectional study into healthy ageing started with founding a

  16. Dementia in intellectual disability: a review of diagnostic challenges ...

    African Journals Online (AJOL)

    The evaluation of dementia in individuals with intellectual disability (ID), which will guide subsequent intervention, care and management depends on the systematic review of a number of factors: (1) the individual historical context, obtained from multiple sources, (2) evaluation of the pre-existing cognitive, behavioural, ...

  17. Dementia in intellectual disability: a review of diagnostic challenges

    African Journals Online (AJOL)

    important in the context of rising life expectancies in this ... The evaluation of dementia in individuals with intellectual disability (ID), which will guide subsequent intervention, ... approach to the diagnosis of dementia in ID. .... reduced capacity for new learning. ..... mild memory decline, slightly shorter attention span, slower.

  18. Hypertension, Hyperglycemia, and Hyperlipemia among Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Lin, Pei-Ying; Lin, Lan-Ping; Lin, Jin-Ding

    2010-01-01

    The present paper aims to assess the hypertension, hyperglycemia and hyperlipidemia prevalence of adolescents with intellectual disabilities, and to recognize the health disparities between the study participants and the general population. This study conducted a cross-sectional medical chart analysis of 856 students who participated in school…

  19. Using communication to reduce challenging behaviors in individuals with autism spectrum disorders and intellectual disability.

    Science.gov (United States)

    Hutchins, Tiffany L; Prelock, Patricia A

    2014-01-01

    This article describes the relationship between expressive communication impairments and common challenging behaviors in individuals with Autism Spectrum Disorder and Intellectual Disability. The communication challenges of individuals with Autism Spectrum Disorder/Intellectual Disability are described and several evidence-based intervention strategies are proposed to support communication so as to decrease challenging behaviors. Recommendations for practice are offered. Copyright © 2014 Elsevier Inc. All rights reserved.

  20. An exploration of the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities.

    LENUS (Irish Health Repository)

    Ryan, Karen

    2010-09-01

    Research suggests that shortcomings exist in the provision of palliative care to people with intellectual disabilities. This mixed-methods study aimed to describe the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities. The sample was drawn from the population of one Health Service Executive area in Ireland. Staff from intellectual disability and palliative care services completed surveys and participated in focus group discussions. Three hundred and eighty-nine questionnaires were distributed and 16 focus groups were held. Fifty-nine per cent of palliative care staff and 67% of intellectual disability services staff had cared for someone with intellectual disability who had died but level of experience was low. Both palliative care and intellectual disability services staff lacked confidence in their ability to provide palliative care. Staff were challenged by perceived \\'differences\\' and \\'difficulties\\' in the provision of care. They endorsed a partnership approach to care but focus group discussions revealed that a shared desire to cooperate was insufficient to guarantee effective collaboration.

  1. Receptive Language Skills in Slovak-Speaking Children With Intellectual Disability: Understanding Words, Sentences, and Stories.

    Science.gov (United States)

    Polišenská, Kamila; Kapalková, Svetlana; Novotková, Monika

    2018-06-05

    The study aims to describe receptive language skills in children with intellectual disability (ID) and to contribute to the debate on deviant versus delayed language development. This is the 1st study of receptive skills in children with ID who speak a Slavic language, providing insight into how language development is affected by disability and also language typology. Twenty-eight Slovak-speaking children participated in the study (14 children with ID and 14 typically developing [TD] children matched on nonverbal reasoning abilities). The children were assessed by receptive language tasks targeting words, sentences, and stories, and the groups were compared quantitatively and qualitatively. The groups showed similar language profiles, with a better understanding of words, followed by sentences, with the poorest comprehension for stories. Nouns were comprehended better than verbs; sentence constructions also showed a qualitatively similar picture, although some dissimilarities emerged. Verb comprehension was strongly related to sentence comprehension in both groups and related to story comprehension in the TD group only. The findings appear to support the view that receptive language skills follow the same developmental route in children with ID as seen in younger TD children, suggesting that language development is a robust process and does not seem to be differentially affected by ID even when delayed.

  2. A Masculine Perspective of Gendered Topics in the Research Literature on Males and Females with Intellectual Disability

    Science.gov (United States)

    Wilson, Nathan J.; Parmenter, Trevor R.; Stancliffe, Roger J.; Shuttleworth, Russell P.; Parker, Desrae

    2010-01-01

    Background: A focus on male social pathologies may have evolved within parts of the intellectual disability research literature. This article explores this notion and makes some connections between mainstream gender theory about hegemonic masculinity and the current gendered discourse in intellectual disability research. Method: We conducted a…

  3. Social Connections for Older People with Intellectual Disability in Ireland: Results from Wave One of IDS-TILDA

    Science.gov (United States)

    McCausland, Darren; McCallion, Philip; Cleary, Eimear; McCarron, Mary

    2016-01-01

    Background: The literature on influences of community versus congregated settings raises questions about how social inclusion can be optimised for people with intellectual disability. This study examines social contacts for older people with intellectual disability in Ireland, examining differences in social connection for adults with intellectual…

  4. Improving the Occupational Skills of Students with Intellectual Disability by Applying Video Prompting Combined with Dance Pads

    Science.gov (United States)

    Lin, Mei-Lan; Chiang, Ming-Shan; Shih, Ching-Hsiang; Li, Meng-Fang

    2018-01-01

    Background: Individuals with intellectual disability (ID) are prone to inattention, are slow in learning and reaction, and have deficits in memory skills. Providing proper vocational education and training for individuals with intellectual disability is able to enhance their occupational skills. Materials and Methods: This study applied video…

  5. Attitudes Towards the Sexuality of Adults with an Intellectual Disability: Parents, Support Staff, and a Community Sample

    Science.gov (United States)

    Cuskelly, Monica; Bryde, Rachel

    2004-01-01

    Attitudes toward the sexuality of adults with intellectual disability were assessed in parents and carers of adults with intellectual disability and in a community sample. An instrument that contained items relating to eight aspects of sexuality (sexual feelings, sex education, masturbation, personal relationships, sexual intercourse,…

  6. Reliability and Validity of the SPAID-G Checklist for Detecting Psychiatric Disorders in Adults with Intellectual Disability

    Science.gov (United States)

    Bertelli, Marco; Scuticchio, Daniela; Ferrandi, Angela, Lassi, Stefano; Mango, Francesco; Ciavatta, Claudio; Porcelli, Cesare; Bianco, Annamaria; Monchieri, Sergio

    2012-01-01

    SPAID (Psychiatric Instrument for the Intellectually Disabled Adult) is the first Italian tool-package for carrying out psychiatric diagnosis in adults with Intellectual Disabilities (ID). It includes the "G" form, for general diagnostic orientation, and specific checklists for all groups of syndromes stated by the available…

  7. "Moby-dick is my favorite:" evaluating a cognitively accessible portable reading system for audiobooks for individuals with intellectual disability.

    Science.gov (United States)

    Davies, Daniel K; Stock, Steven E; King, Larry R; Wehmeyer, Michael L

    2008-08-01

    Significant barriers exist for individuals with intellectual disability to independently access print-based content. It is regrettable that, while the amount of content now available electronically increases, tools to access these materials have not been developed with individuals with intellectual disability in mind. This article reports the results of research evaluating the use of a palmtop PC-based application designed to enable individuals with intellectual disability to access electronic books and documents. Participants with intellectual disability were randomly assigned to 1 of 3 groups, each group differing in the type of audio player used. Participants who used the specially designed reader made significantly fewer errors accessing electronic books and required significantly fewer prompts than did participants using either of 2 mainstream audiobook readers.

  8. Perspectives of Employees with Intellectual Disabilities on Themes Relevant to Their Job Satisfaction. An Explorative Study using Photovoice

    NARCIS (Netherlands)

    Akkerman, A.; Janssen, C.G.C.; Kef, S.; Meininger, H.P.

    2014-01-01

    Background: This study explored the perspectives of people with intellectual disabilities on themes relevant to their job satisfaction in integrated and sheltered employment. Method: The photovoice method was used. Nine participants with moderate to mild intellectual disabilities, working in

  9. Prevalence of chronic diseases in adolescents with intellectual disability

    NARCIS (Netherlands)

    Oeseburg, B.; Jansen, D. E. M. C.; Dijkstra, G. J.; Groothoff, J. W.; Reijneveld, S. A.

    2010-01-01

    Valid community-based data on the prevalence of chronic diseases in adolescents (12-18 years) with intellectual disability (ID-adolescents) are scarce. The aim of this study was to assess the prevalence rates and the nature of chronic diseases in a population of ID-adolescents and to compare them

  10. Life Online: Resources for Students with an Intellectual Disability.

    Science.gov (United States)

    Weeks, Kerri

    2001-01-01

    Two Australian agencies planned, developed, piloted, and evaluated an online resource for teaching independent living skills to adult students with a mild intellectual disability using technology and the Internet. The resource, called Life Online, is a package of support resource materials tested in regional classrooms in Victoria, Australia.…

  11. Paediatric Palliative Care and Intellectual Disability--A Unique Context

    Science.gov (United States)

    Duc, Jacqueline K.; Herbert, Anthony Robert; Heussler, Helen S.

    2017-01-01

    Background: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. Method: This study describes the complex care of children with life-limiting conditions and intellectual…

  12. Motivational Aspects of Gaming for Students with Intellectual Disabilities

    Science.gov (United States)

    Saridaki, Maria; Mourlas, Constantinos

    2011-01-01

    The attention to learners with special needs, in particular those with intellectual disabilities, is an area of continuous development. It is considered important to develop adaptive educational solutions for the integration of people with educational difficulties according to their needs. Digital games provide an attractive and direct platform in…

  13. Mothering with Intellectual Disabilities: Relationship between Social Support, Health and Well-Being, Parenting and Child Behaviour Outcomes

    Science.gov (United States)

    Aunos, Marjorie; Feldman, Maurice; Goupil, Georgette

    2008-01-01

    Background: There is a general agreement in the literature that no systematic correlation exists between parental intellectual disability "per se" and parenting performance. Yet, a few studies in the field of parents and parenting with intellectual disability have explored other potential determinants of parenting and child outcomes. In…

  14. Effects on Physical Health of a Multicomponent Programme for Overweight and Obesity for Adults with Intellectual Disabilities

    Science.gov (United States)

    Martínez-Zaragoza, Fermín; Campillo-Martínez, José M.; Ato-García, Manuel

    2016-01-01

    Background: Overweight and obesity are major health risk factors in people with intellectual disabilities. The aim of this study was to test the effectiveness of a multicomponent programme (physical activity, diet and motivation) for overweight and obesity in adults with intellectual disabilities. Material and Methods: A quasi-experimental design…

  15. Weight Management in Adults with Intellectual and Developmental Disabilities: A Randomized Controlled Trial of Two Dietary Approaches

    Science.gov (United States)

    Ptomey, Lauren T.; Saunders, Richard R.; Saunders, Muriel; Washburn, Richard A.; Mayo, Matthew S.; Sullivan, Debra K.; Gibson, Cheryl A.; Goetz, Jeannine R.; Honas, Jeff J.; Willis, Erik A.; Danon, Jessica C.; Krebill, Ron; Donnelly, Joseph E.

    2018-01-01

    Background: The prevalence of obesity among individuals with intellectual and developmental disabilities (IDD) is equal to or greater than the general population. Methods: Overweight/obese adults (BMI =25 kg/m2) with mild-to-moderate intellectual and developmental disabilities were randomized to an enhanced stop light diet…

  16. "I'm Still Here": Exploring What Matters to People with Intellectual Disability during Advance Care Planning

    Science.gov (United States)

    McKenzie, Nicola; Mirfin-Veitch, Brigit; Conder, Jennifer; Brandford, Sharon

    2017-01-01

    Background: This study sought to identify, from the perspective of people with intellectual disabilities and life limiting conditions, the factors that strengthened and inhibited their Advance Care Planning. Methods: This in depth qualitative study explored the experiences of four people with intellectual disability and life limiting conditions,…

  17. Community managed services for persons with intellectual disability: Andhra Pradesh experience.

    Science.gov (United States)

    Narayan, Jayanthi; Pratapkumar, Raja; Reddy, Sudhakara P

    2017-09-01

    In resource poor settings innovative and bottom-up approaches are required to provide services to people with with disabilities. In this context, the present paper explains a community-based model of manpower development and coordination of services for people with intellectual disabilities in unified state of Andhra Pradesh in India. Women with disabilities from the village were identified, and those willing to be trained to work as community resource persons (CRPs) were selected and given hands-on training in a phased manner. A total of 130 women were trained in five groups of 25-30 per group and were deployed in the community to screen, identify and refer children with intellectual disabilities. The training content included basic stimulation and interface with functionaries of other government departments of health, education and welfare to ensure comprehensive service delivery. Neighbourhood centres (NHCs) were established where the CRPs could meet with families collectively. The results indicated that the CRPs were welcomed by the families. The NHCs established primarily as recreation centres, promoted inclusion and functioned as information dissemination centre. The services provided by the CRPs were owned and monitored by the Women's self-help group and the disability groups thus ensuring sustainability of the model.

  18. De novo mutations in the genome organizer CTCF cause intellectual disability

    DEFF Research Database (Denmark)

    Gregor, Anne; Oti, Martin; Kouwenhoven, Evelyn N

    2013-01-01

    An increasing number of genes involved in chromatin structure and epigenetic regulation has been implicated in a variety of developmental disorders, often including intellectual disability. By trio exome sequencing and subsequent mutational screening we now identified two de novo frameshift...... mutations and one de novo missense mutation in CTCF in individuals with intellectual disability, microcephaly, and growth retardation. Furthermore, an individual with a larger deletion including CTCF was identified. CTCF (CCCTC-binding factor) is one of the most important chromatin organizers in vertebrates...... and is involved in various chromatin regulation processes such as higher order of chromatin organization, enhancer function, and maintenance of three-dimensional chromatin structure. Transcriptome analyses in all three individuals with point mutations revealed deregulation of genes involved in signal transduction...

  19. What Symptoms Predict the Diagnosis of Mania in Persons with Severe/Profound Intellectual Disability In Clinical Practice?

    Science.gov (United States)

    Matson, J. L.; Gonzalez, M. L.; Terlonge, C.; Thorson, R. T.; Laud, R. B.

    2007-01-01

    Background: While researchers have attempted to address the difficulties of diagnosing affective disorders in the intellectually disabled population, diagnosing bipolar disorder in an individual with severe intellectual disability (ID) remains a challenge. The aim of this study was to identify what symptoms can predict a diagnosis of mania in the…

  20. How to Facilitate Transition to Adulthood? Innovative Solutions from Parents of Young Adults with Profound Intellectual Disability

    Science.gov (United States)

    Gauthier-Boudreault, Camille; Couture, Mélanie; Gallagher, Frances

    2018-01-01

    Background: At age 21, access to specialised services for youth with profound intellectual disability is reduced. Few studies have focused on parents' views concerning potential solutions to ease the transition to adulthood, and most existing solutions target young adults with less severe intellectual disability. The aim of this study is to…