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Journal of Intellectual Disability Research: JIDR

A B Courtemanche, B P Lloyd, J T Tapp
BACKGROUND: Self-injurious behaviour (SIB) is a treatment-resistant aberrant behaviour that significantly impacts the lives of people with intellectual disabilities (ID). Direct observations of SIB under naturally occurring conditions can inform the unique structural properties of these behaviours, and the contexts in which they occur. While previous applications of sequential analyses have identified strong temporal associations between instances of SIB, they have relied on methods that do not adequately control for chance sequencing and may mask within-participant variability by pooling data across contexts and response topographies...
March 14, 2018: Journal of Intellectual Disability Research: JIDR
L Bell, C Oliver, A Wittkowski, J Moss, D Hare
BACKGROUND: Catatonia-like presentations in people with autism have been increasingly recognised within research and diagnostic guidelines. The recently developed Attenuated Behaviour Questionnaire has identified that attenuated behaviour [autistic catatonia] is very prevalent in people with autism spectrum disorders (ASDs) and associated with repetitive behaviour. In the current study, we investigated attenuated behaviour within two genetic syndromes associated with ASD and examined ASD and repetitive behaviour as longitudinal predictors of attenuated behaviour...
March 13, 2018: Journal of Intellectual Disability Research: JIDR
A Dunham, D Kinnear, L Allan, E Smiley, S-A Cooper
BACKGROUND: 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. AIMS: 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...
March 12, 2018: Journal of Intellectual Disability Research: JIDR
C-C J J Chen, S D R Ringenbach
BACKGROUND: High prevalence of obesity and features of obstructive sleep apnea (OSA) are major health issues in individuals with Down syndrome (DS), and both may also affect adversely on their daily activities. Further, lower levels of physical work capacity (PWC) have been reported in this population compared to their peers with intellectual disabilities. However, no study examines the relationships between obesity and sleep problems with PWC in individuals with DS. Thus, this study investigated the influence of body mass index (BMI) and different types of sleep problems on PWC in adolescents and young adults with DS (14-31 years)...
February 27, 2018: Journal of Intellectual Disability Research: JIDR
N H Hamzaid, V M Flood, T Prvan, H T O'Connor
BACKGROUND: Good nutrition knowledge among carers of people with intellectual disability (ID) living in group homes is essential as they have a primary role in food provision for residents. Research on the nutrition knowledge of carers is limited. METHOD: This cross-sectional study assessed the level of general nutrition knowledge in a convenience sample of Australian carers (C) of people with ID and compared this to the general Australian community (CM). Nutrition knowledge was evaluated using the validated General Nutrition Knowledge Questionnaire...
February 27, 2018: Journal of Intellectual Disability Research: JIDR
J M Grey, V Totsika, R P Hastings
BACKGROUND: Little is known about the role of living circumstances to the perception of subjective well-being (SWB) and health of adults with intellectual disability (ID). The aim of the present study was to examine whether living circumstances impact differently on the perception of health and SWB and whether potential differences persist after accounting for other variables (e.g. level of support needs and reporting method). METHODS: Secondary data analysis was undertaken of a large national survey of adults with an ID in England, aged 16 years and over...
February 26, 2018: Journal of Intellectual Disability Research: JIDR
K L Austin, M Hunter, E Gallagher, L E Campbell
BACKGROUND: The transition to adulthood is a major developmental milestone; a time of self-discovery and increased independence. For young adults (YA) with intellectual disabilities (ID), however, this period is especially challenging. The increased incidence of mental health disorders in this population, such as depression and anxiety, make this transition even more difficult, increasing caregiver burden at a time when the young adult would traditionally be gaining independence. It is not clear, however, why YA with ID are more susceptible and what factors may predict mental health symptoms...
February 23, 2018: Journal of Intellectual Disability Research: JIDR
R S Honjo, C B Mello, L S E Pimenta, E C Nuñes-Vaca, L M Benedetto, R B F Khoury, D M Befi-Lopes, C A Kim
BACKGROUND: Cri du Chat syndrome (CdCS) is a genetic syndrome caused by deletions in the short arm of chromosome 5. Although the main clinical features of CdCS are well known, the neurocognitive and behavioural characteristics of the phenotype are rarely described in detail in the literature. In this study, we analysed the main phenotypic features of CdCS from a parental perspective. METHOD: A questionnaire was sent to 700 Brazilian families that were registered in the Brazilian Association of CdCS...
February 20, 2018: Journal of Intellectual Disability Research: JIDR
J Finlayson, J Crockett, S Shanmugam, B Stansfield
BACKGROUND: Adults with intellectual disabilities (IDs) experience high rates of falls and have high rates of gait or balance issues which contribute to falls. Lycra splinting garments (LSGs) have potential to improve gait or balance, but they have never before been tested with adults with IDs who fall due to gait or balance issues. The aim of this study was to test in adults with IDs, the feasibility of using LSGs to improve movement and function and reduce falls, whilst also exploring usability and likely compliance...
February 14, 2018: Journal of Intellectual Disability Research: JIDR
S Macdonald, J Morrison, C A Melville, M Baltzer, L MacArthur, S A Cooper
BACKGROUND: Adults with intellectual disabilities (IDs) have consistently poorer health outcomes than the general population. There is evidence that routine health checks in primary care may improve outcomes. We conducted a randomised controlled trial of practice nurse led health checks. Here, we report findings from the nested qualitative study. AIM: To explore practice nurse perceptions and experience of delivering an anticipatory health check for adults with IDs...
February 9, 2018: Journal of Intellectual Disability Research: JIDR
L Wilde, K Wade, K Eden, J Moss, P J de Vries, C Oliver
BACKGROUND: Individuals with tuberous sclerosis complex (TSC) are at increased risk of developing self-injurious behaviour. The persistence of this deleterious behaviour over years is reported in aetiologically heterogeneous samples to be between 60% and 80% but is unknown for TSC. METHOD: In this study, we determined the 3-year persistence of self-injury in a sample (n = 52) of children (with and without ID) and adults (with ID) with TSC and examined characteristics associated with persistence...
February 8, 2018: Journal of Intellectual Disability Research: JIDR
I H Zaal-Schuller, D I Willems, F Ewals, J B van Goudoever, M A de Vos
BACKGROUND: In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD discussions is largely unknown. The objective of this research was to investigate the involvement in the hospital of nurses in discussions with parents and physicians about EoLDs for children with PIMD. METHOD: In a retrospective, qualitative study, we conducted semi-structured interviews with the nurses of 12 children with PIMD for whom an EoLD was made within the past 2 years...
January 31, 2018: Journal of Intellectual Disability Research: JIDR
G Gallego, A Dew, M Lincoln, A Bundy, K Bulkeley, J Brentnall, C Veitch
BACKGROUND: The implementation of the Australian National Disability Insurance Scheme is expected to generate a responsive, person-centred system that will empower people with disability to choose the services and support they receive. However, little attention has been paid to examine how users of the National Disability Insurance Scheme will choose and spend their individual budgets. This study aimed to determine quantitatively the relative importance that carers of people with a disability living in rural Australia place on different therapy service delivery characteristics...
January 24, 2018: Journal of Intellectual Disability Research: JIDR
S Manti, M C Cutrupi, C Cuppari, E Ferro, V Dipasquale, G Di Rosa, R Chimenz, M A La Rosa, A Valenti, V Salpietro
BACKGROUND: Intellectual disability (ID) is part of the Down syndrome (DS) phenotypic spectrum, but the exact molecular pathophysiology of ID in individuals with DS is not yet fully understood, with many research hypotheses still unproven. Basing on previous studies (which suggested a possible role of altered inflammatory response in DS-related ID), we assessed the serum levels of a number of inflammatory biomarkers [serum amyloid A (SAA), C-reactive protein (C-RP), high mobility group box-1 (HMGB1)] in a cohort of individuals with DS and healthy controls...
January 19, 2018: Journal of Intellectual Disability Research: JIDR
H M Costa, B Nicholson, C Donlan, J Van Herwegen
BACKGROUND: Different domain-specific and domain-general cognitive precursors play a key role in the development of mathematical abilities. The contribution of these domains to mathematical ability changes during development. Primary school-aged children who show mathematical difficulties form a heterogeneous group, but it is not clear whether this also holds for preschool low achievers (LAs) and how domain-specific and domain-general abilities contribute to mathematical difficulties at a young age...
January 19, 2018: Journal of Intellectual Disability Research: JIDR
B L Ncube, A Perry, J A Weiss
BACKGROUND: Research examining the quality of life (QoL) of children with severe developmental disabilities (SDD) is limited. The present study examines parent perceptions of child QoL in children with SDD compared with typically developing (TD) children and then examines predictors of QoL for the SDD group. METHOD: Parents of 246 children with SDD (aged 4 to 19 years) and 210 TD children (aged 4 to 18 years) responded to an online survey. QoL was measured using a composite variable composed of the child's happiness, achievement of potential and friendship quality...
January 9, 2018: Journal of Intellectual Disability Research: JIDR
M O'Dwyer, J Peklar, N Mulryan, P McCallion, M McCarron, M C Henman
BACKGROUND: The prevalence of epilepsy is higher in people with intellectual disability (ID) and increases with the degree of ID. Although life expectancy for people with ID is increasing, people with ID coexisting with epilepsy have a higher mortality rate, particularly those who had recent seizures. There have been few observational studies of the prevalence and patterns of anti-epileptic prescribing among older people with ID and epilepsy. The aim of this study was to investigate prevalence and patterns of anti-epileptic prescribing in the treatment of epilepsy in a representative population of older people with ID and epilepsy...
January 5, 2018: Journal of Intellectual Disability Research: JIDR
A J Esbensen, E K Hoffman, E Stansberry, R Shaffer
BACKGROUND: There is a need for rigorous measures of sleep in children with Down syndrome as sleep is a substantial problem in this population and there are barriers to obtaining the gold standard polysomnography (PSG). PSG is cost-prohibitive when measuring treatment effects in some clinical trials, and children with Down syndrome may not cooperate with undergoing a PSG. Minimal information is available on the validity of alternative methods of assessing sleep in children with Down syndrome, such as actigraphy and parent ratings...
January 5, 2018: Journal of Intellectual Disability Research: JIDR
A J Esbensen, E K Hoffman, D W Beebe, K C Byars, J Epstein
BACKGROUND: In the general population, sleep problems have an impact on daytime performance. Despite sleep problems being common among children with Down syndrome, the impact of sleep problems on daytime behaviours in school-age children with Down syndrome is an understudied topic. Our study examined the relationship between parent-reported and actigraphy-measured sleep duration and sleep quality with parent and teacher reports of daytime behaviour problems among school-age children with Down syndrome...
December 28, 2017: Journal of Intellectual Disability Research: JIDR
C Mumbardó-Adam, J Guàrdia-Olmos, C Giné, S K Raley, K A Shogren
BACKGROUND: A new measure of self-determination, the Self-Determination Inventory: Student Report (Spanish version), has recently been adapted and empirically validated in Spanish language. As it is the first instrument intended to measure self-determination in youth with and without disabilities, there is a need to further explore and strengthen its psychometric analysis based on item response patterns. METHOD: Through item response theory approach, this study examined item observed distributions across the essential characteristics of self-determination...
December 28, 2017: Journal of Intellectual Disability Research: JIDR
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