Journal of Intellectual Disability Research
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The relation between intrapersonal and interpersonal staff behaviour towards clients with ID and challenging behaviour: a validation study of the Staff–Client Interactive Behaviour Inventory
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Conclusions The SCIBI can be used to identify staff intrapersonal and interpersonal behaviour towards clients with ID and challenging behaviour. Results obtained with the SCIBI can provide new directions for individual client treatment plans and staff training programmes. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - November 11, 2009 Category: Disability Authors: A. P. A. M. Willems, P. J. C. M. Embregts, G. J. J. M. Stams, X. M. H. Moonen Source Type: journals
Staff attributions about challenging behaviours of people with intellectual disabilities and transactional stress process: a qualitative study
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Conclusions A need to extent the research concerning attribution is suggested. The insertion of research into ecological contexts and the introduction of coping concept regarding staff attributions of challenging behaviours would allow a broader view of the role of attributions. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - November 2, 2009 Category: Disability Authors: A. Cudré-Mauroux Source Type: journals
Home literacy environment of pre-school children with intellectual disabilities
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Background For pre-school children, the home literacy environment (HLE) plays an important role in the development of language and literacy skills. As there is little known about the HLE of children with intellectual disabilities (ID), the aim of the present study was to investigate the HLE of children with ID in comparison with children without disabilities.Method Parent questionnaires concerning aspects of the HLE were used to investigate differences between 48 children with ID, 107 children without disabilities of the same chronological age and 36 children without disabilities of the same mental age (MA). Furthermore, ...
Source: Journal of Intellectual Disability Research - November 2, 2009 Category: Disability Authors: M. van der Schuit, M. Peeters, E. Segers, H. van Balkom, L. Verhoeven Source Type: journals
Melatonin decreases daytime challenging behaviour in persons with intellectual disability and chronic insomnia
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Background Persons with intellectual disability (ID) and sleep problems exhibit more daytime challenging behaviours than persons with ID without sleep problems. Several anecdotal reports suggest that melatonin is not only effective in the treatment of insomnia, but also decreases daytime challenging behaviour. However, the effect of melatonin treatment on daytime challenging behaviour in persons with ID has not been investigated in a randomised controlled trial.Method We investigated the effects of melatonin on challenging behaviour using data from two randomised controlled trials on the efficacy of melatonin on sleep pro...
Source: Journal of Intellectual Disability Research - November 2, 2009 Category: Disability Authors: W. Braam, R. Didden, A. P. H. M. Maas, H. Korzilius, M. G. Smits, L. M. G. Curfs Source Type: journals
Using personal goal setting to promote the social inclusion of people with intellectual disability living in supported accommodation
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Conclusions Goal setting seems a suitable way of promoting social inclusion as it can be tailored to the needs and aspirations of individuals, although extra efforts may be needed to implement and sustain it with staff across all accommodation options. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - October 29, 2009 Category: Disability Authors: R. McConkey, S. Collins Source Type: journals
Resilience and the course of daily parenting stress in families of young children with intellectual disabilities
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Conclusions Parenting stress processes are not shared entirely across the preschool period in parents of children with ID. Although individual parent characteristics and high-quality dyadic relationships contribute to emerging resilience in parents of children with ID, parents also affect each others' more resilient adaptations in ways that have not been previously considered. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - October 28, 2009 Category: Disability Authors: E. D. Gerstein, K. A. Crnic, J. Blacher, B. L. Baker Source Type: journals
Social cognition in children with Down's syndrome: challenges to research and theory building
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Characterising how socio-cognitive abilities develop has been crucial to understanding the wider development of typically developing children. It is equally central to understanding developmental pathways in children with intellectual disabilities such as Down's syndrome. While the process of acquisition of socio-cognitive abilities in typical development and in autism has received considerable attention, socio-cognitive development in Down's syndrome has received far less scrutiny. Initial work in the 1970s and 1980s provided important insights into the emergence of socio-cognitive abilities in the children's early years,...
Source: Journal of Intellectual Disability Research - October 26, 2009 Category: Disability Authors: K. R. Cebula, D. G. Moore, J. G. Wishart Source Type: journals
Coping strategy use, personality, and adjustment of parents rearing children with developmental disabilities
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Conclusions For the most part, the current results demonstrated that the relations among personality, coping and parental outcomes were consistent and stable over the 6-year interval. In addition, although we found some differences between mothers and fathers, there were also many similarities in the frequency of use of different coping strategies, and in the direction of influence of personality and coping strategy on outcome variables. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - October 20, 2009 Category: Disability Authors: L. M. Glidden, A. L. Natcher Source Type: journals
Vitamin D status and optimal supplementation in institutionalized adults with intellectual disability
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Conclusions Vitamin D insufficiency was common in adults with ID living in nursing homes. Both oral and intramuscular administrations of vitamin D3 improved vitamin D status without adverse effects. The treatment response at 6 months was better in the PO group. High-dose intramuscular vitamin D3 injections may be a convenient way to maintain sufficient vitamin D status in adults with ID but further studies are needed to establish the optimal dose and interval as well as subsequent potential health benefits in these patients. Based on this study, vitamin D supplementation with per oral 800 IU/day is recommended to all adul...
Source: Journal of Intellectual Disability Research - October 20, 2009 Category: Disability Authors: P. Kilpinen-Loisa, M. Arvio, V. Ilvesmäki, O. Mäkitie Source Type: journals
Dietary Interventions in Autism Spectrum Disorders: Why They Work When They Do, Why They Don't When They Don't
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(Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - October 14, 2009 Category: Disability Authors: Steve Hinder Source Type: journals
Choosing a measure of support need: implications for research and policy
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Conclusions The strong correlations between these two scales confirm previous findings that current measures of support and measures of adaptive behaviour tap into the same underlying construct. These findings have implications for the development, use and interpretation of research and planning tools. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - September 29, 2009 Category: Disability Authors: H. K. Brown, H. Ouellette-Kuntz, I. Bielska, D. Elliott Source Type: journals
Sexuality and personal relationships for people with an intellectual disability. Part II: staff and family carer perspectives
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Conclusion When compared with the attitudes of family carers towards the sexuality of people with ID, the attitudes of staff carers more closely match those promoted by ideological developments. However, differences in attitudes between carer groups may lead to inconsistent approaches to the management of sexuality. As a consequence, we conclude that there is continued need to provide staff and family carers with opportunities for dialogue and an ongoing need for training in the area of sexuality. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - September 16, 2009 Category: Disability Authors: D. S. Evans, B. E. McGuire, E. Healy, S. N. Carley Source Type: journals
The effect of an intervention aimed at reducing errors when administering medication through enteral feeding tubes in an institution for individuals with intellectual disability
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Conclusions The intervention was found to be effective in an institution for clients with an ID. However, additional efforts are needed to reduce the proportion of administration errors which is still high after the intervention. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - September 9, 2009 Category: Disability Authors: J. C. Idzinga, A. L. de Jong, P. M. L. A. van den Bemt Source Type: journals
Hope as a psychological resilience factor in mothers and fathers of children with intellectual disabilities
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Conclusions Hope is a construct that merits further investigation within families research, and is potentially a factor that could be utilised in intervention to help increase familial well-being. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - September 8, 2009 Category: Disability Authors: T. J. Lloyd, R. Hastings Source Type: journals
Parenting stress in mothers of adults with an intellectual disability: parental cognitions in relation to child characteristics and family support
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Conclusions These results indicate the importance of cognitive variables in the stress of mothers of adults with ID. Potential avenues of future research might focus on the experience of fathers and the impact of positive perceptions as a cognitive factor. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - September 7, 2009 Category: Disability Authors: C. Hill, J. Rose Source Type: journals
Functional impairment severity is associated with health status among older persons with intellectual disability and cerebral palsy*
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Conclusion With the exception of dysphagia, impairment in ADLs and walking capabilities, and not CP diagnosis alone, accounted for disparities in specific diseases. Although the diagnosis of CP may be correlated with functional impairment, it alone may play a minor role in determining health trajectories in older persons with conjoint ID and CP. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - September 2, 2009 Category: Disability Authors: C. M. Henderson, M. Rosasco, L. M. Robinson, J. Meccarello, M. P. Janicki, M. A. Turk, P. W. Davidson Source Type: journals
Ethnic variation in service utilisation among children with intellectual disability
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Conclusions Significant ethnic differences in service utilisation among children with ID were found for both CAMHS and social service contact. There was particularly low service use for the South Asian group. These differences might arise because of differences in family organisation, as more South Asian children lived in two-parent families, which may have been better able to provide care than single-parent families. Other factors such as variation in parental belief systems and variation in psychopathology may be relevant. Implications are discussed. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - August 31, 2009 Category: Disability Authors: G. Durà-Vilà, M. Hodes Source Type: journals
Clinical outcomes of a specialised inpatient unit for adults with mild to severe intellectual disability and mental illness
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Conclusions This study is one of the first to consider outcomes of higher and lower functioning individuals with ID on a specialised inpatient unit. Results suggest that outcomes may be different for these groups, and some clinical measures may be more sensitive to changes in patients with more severe disabilities. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - August 30, 2009 Category: Disability Authors: Y. Lunsky, S. E. White, A. M. Palucka, J. Weiss, S. Bockus, T. Gofine Source Type: journals
Social information processing in boys with autistic spectrum disorder and mild to borderline intellectual disabilities
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Conclusions The present study extends our knowledge regarding social information processing of children with ASD (PDD-NOS) and mild to borderline ID. This knowledge may be helpful in designing and adapting programmes (e.g. social skills training, self-management training) for the management of behaviour problems and development of adaptive behaviour of children with ASD and mild to borderline ID. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - August 29, 2009 Category: Disability Authors: P. Embregts, M. van Nieuwenhuijzen Source Type: journals
Staffs' knowledge and perceptions of working with women with intellectual disabilities and mental health problems
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Conclusion These results are discussed in light of current developments and policy within mainstream psychiatric gender approaches. Greater recognition of a proactive health approach for both staff and women with an ID is recommended. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - August 27, 2009 Category: Disability Authors: L. Taggart, R. McMillan, A. Lawson Source Type: journals
Intellectual disabilities and genetic disorders can lead the way in translational research
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(Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - August 26, 2009 Category: Disability Authors: Petrus de Vries, Chris Oliver Source Type: journals
Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives
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Conclusion Service users had an understanding of their sexual rights and the social and environmental barriers that prevent them from fulfilling their rights. The provision of sex education training and promotion of positive attitudes towards appropriate sexual expression is critical to the realization of sexual autonomy for people with an ID. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - August 25, 2009 Category: Disability Authors: E. Healy, B. E. McGuire, D. S. Evans, S. N. Carley Source Type: journals
Autism spectrum disorders in genetic syndromes: implications for diagnosis, intervention and understanding the wider autism spectrum disorder population
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Conclusions There is a need for caution in interpreting the significance of superficial similarities between ASD and the behavioural phenotypes of certain genetically determined syndromes. However, recognition of ASD-like characteristics (even where a true diagnosis of ASD may not be relevant) in individuals with genetic syndromes is crucial in ensuring that individuals receive appropriate behavioural management and educational placement. Further research in this field requires fine-grained investigation of behavioural phenomenology within individual syndrome groups. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - August 25, 2009 Category: Disability Authors: J. Moss, P. Howlin Source Type: journals
From mTOR to cognition: molecular and cellular mechanisms of cognitive impairments in tuberous sclerosis
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Conclusions Results suggest that reversing the underlying molecular deficits of TSC with rapamycin or other mTOR inhibitors could result in clinically significant improvements of cognitive function and neurological symptoms, even if treatments are started in adulthood. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - August 19, 2009 Category: Disability Authors: D. Ehninger, P. J. de Vries, A. J. Silva Source Type: journals
Cause-specific mortality and death certificate reporting in adults with moderate to profound intellectual disability
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Conclusions Strategies to reduce inequalities in people with ID need to focus on decreasing mortality from potentially preventable causes, such as respiratory infections, circulatory system diseases and accidental deaths. The lack of mention of ID on death certificates highlights the importance of effective record linkage and ID reporting in health and social care settings to facilitate the government's confidential inquiry into causes of death in this population. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - August 17, 2009 Category: Disability Authors: F. Tyrer, C. McGrother Source Type: journals
Failure to detect deaf-blindness in a population of people with intellectual disability
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Conclusion Deaf-blindness is most often not identified either by standard medical screening or by care staff. Individuals with this disability, however, require provision of special kinds of care. Four categories of deaf-blindness are proposed, according to the severity of sensory impairment in each modality. The tests used in this study are non-invasive and are appropriate for individuals with ID and children. Early and periodic screening for visual and hearing impairment in individuals with ID is recommended. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - August 17, 2009 Category: Disability Authors: J. Fellinger, D. Holzinger, A. Dirmhirn, J. van Dijk, D. Goldberg Source Type: journals
High prevalence of obesity in ambulatory children and adolescents with intellectual disability
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Conclusions The present study suggests that that obesity may be very prevalent among ambulatory children and adolescents with ID, and that increased obesity risk may begin in childhood. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - August 6, 2009 Category: Disability Authors: L. Stewart, L. Van de Ven, V. Katsarou, E. Rentziou, M. Doran, P. Jackson, J. J. Reilly, D. Wilson Source Type: journals
Autonomy in relation to health among people with intellectual disability: a literature review
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Conclusions In spite of decades of promoting autonomy, the exercise of autonomy in relation to health has so far rarely been an issue in the literature. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - July 23, 2009 Category: Disability Authors: M. Wullink, G. Widdershoven, H. van Schrojenstein Lantman-de Valk, J. Metsemakers, G.-J. Dinant Source Type: journals
In Memory of Dr. Edward (Ted) Carr
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(Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - July 21, 2009 Category: Disability Authors: Ann P. Turnbull Source Type: journals
Staff attributions towards men with intellectual disability who have a history of sexual offending and challenging behaviour
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Conclusions The differences between staff attributions regarding challenging behaviour and sexual offending potentially relate to the decision-making processes involved in deciding whether or not to involve criminal justice agencies when someone with ID commits a sexual offence. Further research within this area is warranted. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - July 20, 2009 Category: Disability Authors: L. MacKinlay, P. E. Langdon Source Type: journals
Adaptive force control in grasping as a function of level of developmental disability
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Conclusions The findings show task relevant adaptive grasping control with inhibition of force output at very-low-force conditions being the primary performance deficit of the profound disability group as a function of level of developmental disability. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - July 20, 2009 Category: Disability Authors: R. L. Sprague, K. M. Deutsch, K. M. Newell Source Type: journals
Overcoming the barriers experienced in conducting a medication trial in adults with aggressive challenging behaviour and intellectual disabilities
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Conclusions Variation in beliefs over the efficacy of drug treatment, difficulties within multidisciplinary teams and perceived ethical concerns over medication trials in this population all contributed to poor recruitment. Where appropriate to the research question cluster randomised trials represent an ethically and logistically feasible alternative to individually randomised trials. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - July 20, 2009 Category: Disability Authors: P. Oliver-Africano, S. Dickens, Z. Ahmed, N. Bouras, S. Cooray, S. Deb, M. Knapp, M. Hare, M. Meade, B. Reece, S. Bhaumik, D. Harley, J. Piachaud, A. Regan, D. Ade Thomas, S. Karatela, B. Rao, T. Dzendrowskyj, L. Lenôtre, J. Watson, P. Tyrer Source Type: journals
Cognitive behavioural therapy: from face to face interaction to a broader contextual understanding of change
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Cognitive behavioural therapy (CBT) is increasingly used to address the emotional and interpersonal problems of people with ID. There is a limited but promising evidence base supporting this activity. However, these individuals face real and continuing challenges in their lives that have implications for their self and interpersonal perceptions. These adversities have implications for the adaptation of CBT. First, it may mean that characteristically negative perceptions may be more common and may be the result of a complex interaction with a truly aversive environment and should not simply be considered as cognitive distor...
Source: Journal of Intellectual Disability Research - July 20, 2009 Category: Disability Authors: A. Jahoda, D. Dagnan, B. Stenfert Kroese, C. Pert, P. Trower Source Type: journals
Unnoticed post-void residual urine volume in people with moderate to severe intellectual disabilities: prevalence and risk factors
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Conclusions The bladder ultrasound scan is a feasible method to identify increased PVR in adults with more severe levels of ID. The prevalence of PVR in adults is similar to prevalences found in the geriatric general population. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - July 16, 2009 Category: Disability Authors: K. H. de Waal, B. M. Tinselboer, H. M. Evenhuis, C. Penning Source Type: journals
A validity study of the Working Group's Orientation Test for individuals with moderate to severe intellectual disability
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Conclusions Screening DAT patients based only on the score of the Orientation Test of the Working Group's Test Battery may produce a large number of diagnostic errors. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - July 15, 2009 Category: Disability Authors: G. Pyo, K. Curtis, R. Curtis, S. Markwell Source Type: journals
Asthma, smoking and BMI in adults with intellectual disabilities: a community-based survey
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Conclusions A very high proportion of patients with ID and asthma were found to be current smokers and/or obese. There is now strong research evidence that both smoking and obesity are implicated in the development of asthma and associated with worse disease outcomes. This study highlights the urgent need for programmes aimed at providing support for people with ID and asthma to stop smoking and to achieve a healthy body weight. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - July 15, 2009 Category: Disability Authors: L. Gale, H. Naqvi, L. Russ Source Type: journals
The significance of neighbours: views and experiences of people with intellectual disability on neighbouring
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Conclusion Understanding influential factors to neighbouring for people with ID may shed light on the processes involved in social integration of people with ID at a neighbourhood level. This paper contributes to understanding the opinions of people with ID on satisfactory neighbourhood relationships, and explores opportunities to improve them. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - June 24, 2009 Category: Disability Authors: L. M. van Alphen, A. J. M. Dijker, H. H. W. van den Borne, L. M. G. Curfs Source Type: journals
Consensus guidelines into the management of epilepsy in adults with an intellectual disability
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Conclusion There is a dearth of high-quality evidence from well-constructed studies on which to base guidance. However, the development of internationally derived consensus guidelines may further support the management of epilepsy in adults with an intellectual disability. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - June 11, 2009 Category: Disability Authors: M. Kerr, M. Scheepers, M. Arvio, J. Beavis, C. Brandt, S. Brown, B. Huber, M. Iivanainen, A. C. Louisse, P. Martin, A. G. Marson, V. Prasher, B. K. Singh, M. Veendrick, R. A. Wallace Source Type: journals
Enhancing capacity to make sexuality-related decisions in people with an intellectual disability
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Conclusion The results demonstrate that tailored sexuality education can improve capacity to make sexuality-related decisions. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - June 11, 2009 Category: Disability Authors: E. Dukes, B. E. McGuire Source Type: journals
Changes in coronary heart disease risk profile of adults with intellectual disabilities following a physical activity intervention
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Conclusion Inactivity is a major risk factor in this population with ID living in a community group setting. The implementation of the physical activity intervention significantly reduced the risk factors for CHD. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - June 11, 2009 Category: Disability Authors: S. J. Moss Source Type: journals
Sleep in individuals with Cri du Chat syndrome: a comparative study
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Conclusions It is concluded that individuals with CDC do not have an increased probability of sleep problems as compared with other individuals who share similar demographic characteristics. Hypotheses about causes of night waking problems in CDC are generated and suggestions for future research of sleep in individuals with CDC are given. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - June 10, 2009 Category: Disability Authors: A. P. H. M. Maas, R. Didden, H. Korzilius, W. Braam, M. G. Smits, L. M. G. Curfs Source Type: journals
People with an intellectual disability living in an intentional community
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Conclusions Results confirm those from earlier studies of intentional communities and suggest that positive outcomes derive from the absence of the overt subordination of residents to staff, the facilitation of friendship with other people with an ID, high levels of meaningful employment and a sense of community. These factors contrast with the experience of living in small homes funded on a contractual basis by public authorities, in which cost pressures reduce wage levels for staff resulting in difficulties in retaining suitable staff and a consequent high staff turnover. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - June 6, 2009 Category: Disability Authors: M. Randell, S. Cumella Source Type: journals
The treatment of challenging behaviour in intellectual disabilities: cost-effectiveness analysis
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Conclusion The treatment of challenging behaviour in ID with antipsychotic drugs is not a cost-effective option. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - May 21, 2009 Category: Disability Authors: R. Romeo, M. Knapp, P. Tyrer, M. Crawford, P. Oliver-Africano Source Type: journals
Performance on the Modified Card Sorting Test and its relation to psychopathology in adolescents and young adults with 22q11.2 deletion syndrome
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Conclusions The schizophrenia-prodrome in 22q11DS involves executive dysfunction, and longitudinal investigation is necessary to examine if specific executive function impairments precedes or co-occurs with the emergence of behavioural psychopathology. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - May 18, 2009 Category: Disability Authors: K. Rockers, O. Ousley, T. Sutton, E. Schoenberg, K. Coleman, E. Walker, J. F. Cubells Source Type: journals
Significant improvement in sleep in people with intellectual disabilities living in residential settings by non-pharmaceutical interventions
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Conclusion For people with ID, sleep can be improved by non-pharmaceutical interventions. A multidisciplinary approach is helpful in selecting an adequate intervention. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - May 11, 2009 Category: Disability Authors: T. Hylkema, C. Vlaskamp Source Type: journals
Community management of intellectual disabilities in Pakistan: a mixed methods study
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Conclusions Our findings suggest that there is significant delay in detection of ID especially in rural setting where more than 70% of population of Pakistan resides. This missed opportunity for rehabilitation in early formative years is a cause of significant distress for the caregivers who rarely receive valid information about course, prognosis and what remedial action to take. There is a need to develop feasible, cost-effective, community level interventions, which can be integrated into existing healthcare systems. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - April 23, 2009 Category: Disability Authors: I. Mirza, A. Tareen, L. L. Davidson, A. Rahman Source Type: journals
The European Prader–Willi Syndrome Clinical Research Database: an aid in the investigation of a rare genetically determined neurodevelopmental disorder
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Conclusion The development of the database has proved to be complex with various administrative and ethical issues to be addressed. At an early stage, it was important to clarify the exact function of the database. It was agreed that it was primarily to support grant-funded research rather than clinical practice. The most complex issues that had to be addressed were concerned with data ownership and establishing the rules for data entry, retrieval and sharing that are compatible with data protection laws, and which are likely to be acceptable to participants and their families and to individual research groups. (Source: J...
Source: Journal of Intellectual Disability Research - April 23, 2009 Category: Disability Authors: A. Holland, J. Whittington, O. Cohen, L. Curfs, F. Delahaye, O. Dudley, B. Horsthemke, A.-C. Lindgren, C. Nourissier, N. Sharma, A. Vogels Source Type: journals
Differentiating characteristics of deafblindness and autism in people with congenital deafblindness and profound intellectual disability
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Conclusions This study indicates that there are some possibilities to differentiate autism from behaviours specific for deafblindness. It also confirms the large overlap in overt behaviours between people with deafblindness and persons with autism. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - April 23, 2009 Category: Disability Authors: M. A. A. Hoevenaars-van den Boom, A. C. F. M. Antonissen, H. Knoors, M. P. J. Vervloed Source Type: journals
Effect of perceived stigmatisation on the quality of life among ageing female family carers: a comparison of carers of adults with intellectual disability and carers of adults with mental illness
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Conclusions This study suggests that attempts to improve these female older family carers' health and social support must include their lifelong unmet needs in terms of how to cope with the perceived stigma associated with their position. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - April 17, 2009 Category: Disability Authors: Y.C. Chou, C.Y. Pu, Y.C. Lee, L.C. Lin, T. Kröger Source Type: journals
Hypothesis: a specific pathway can be identified between genetic characteristics and behaviour profiles in Prader–Willi syndrome via cognitive, environmental and physiological mechanisms
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Conclusions We propose this multilevel approach as useful in setting out hypotheses in order to structure research that can more rapidly advance theory. (Source: Journal of Intellectual Disability Research)
Source: Journal of Intellectual Disability Research - April 6, 2009 Category: Disability Authors: K. A. Woodcock, C. Oliver, G. W. Humphreys Source Type: journals
