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PubMed2003

Psychotropic drug use among people with intellectual disability before and after deinstitutionalization.

BACKGROUND: The use of psychotropic medication among people with intellectual disability (ID) is widespread, and they are one of the most medicated groups in society. A substantial number of individuals with ID receive psychotropic medications that may be inappropriate for their diagnosis. One of the main reasons for the use of psychotropic medication is challenging behaviours. Almost all prevalence studies show higher prevalence rates of psychotropic medication in institutions compared with community living. Studies on deinstitutionalization and the use of psychotropic medication are few and inconclusive. METHOD: The present study is a prospective cohort study without control group. It examines the use of psychotropic medication among 109 subjects aged between 16 and 65 years before (1987) and after (1995) deinstitutionalization. Psychotropic drug dosages were transformed to percentage of defined daily dosage. RESULTS: We found no major changes in the use of neuroleptics after deinstitutionalization neither in frequency nor in dosages, and the trend seemed indiscriminate in relation to diagnosis. The people with schizophrenia or an anxiety disorder did not receive proper drug treatment, nor did they before deinstitutionalization. CONCLUSIONS: The main predictor variable for neuroleptic dosage both before and after deinstitutionalization was challenging behaviour. The reason for this may be the difficulties in determining the extent to which presenting behaviours are the result of a psychiatric disorder or a behaviour disorder, the lack of knowledge among the caretakers and the ensuing referral practice, the lack of knowledge among the general practitioners, and the lack of access to specialized health services.

Adolescent↗

PubMed2004

Prevention of unintentional injury to people with intellectual disability: a review of the evidence.

BACKGROUND: Recent research evidence shows that people with intellectual disability (ID) have double the unintentional injury risk of the general population and the risk is further increased in the presence of psychopathology and epilepsy. The pattern of injury and the circumstances surrounding an injury event in those with ID have some similarity with that of young children in the general population. Interventions to prevent injuries are an important health priority in this vulnerable population. This paper reviews evidence from injury prevention studies for people with ID and also considers the relevance of general population injury interventions for this population. METHOD: Information regarding injury prevention in both ID and general populations was identified using online systems and consultation with research and public health organizations. RESULTS: Few published studies were identified addressing the issue of injury prevention for those with ID. Possible injury prevention strategies appropriate for the major causes of injury in the ID population were identified from the general population literature. While many environmental injury prevention strategies for young children in the general population are applicable to the population with ID, some may require design modification to ensure effectiveness. Other promising approaches include improved information for parents/carers, primary care physician counselling, and home visits by well-informed and motivated professionals. There may be injury prevention benefit from improved management of psychopathology and epilepsy. CONCLUSIONS: The issue of injury prevention for those with ID has not been addressed to the extent that the magnitude of the problem requires. Injury prevention programmes trialling a variety of evidence-based approaches and strategies are needed to protect the quality of life for the ID population and their families.

Accidental Falls↗

PubMed2006

Quality of life in adults with an intellectual disability: the Evaluation of Quality of Life Instrument.

BACKGROUND: The construct of quality of life (QoL) has been the focus of a great deal of recent research and has been operationalized in the assessment of the effectiveness of biomedical and rehabilitative interventions. Consequently, the effective measurement of QoL has become a relevant issue. QoL assessment should take account of both objective life conditions and reported satisfaction with those conditions, and should recognize that QoL has multiple domains. There is also evidence to suggest that it is useful to supplement such assessments with the evaluations of significant others within a multidimensional assessment perspective. METHODS: The current study describes a further stage of testing and refinement of the Evaluation of Quality of Life Instrument (EQLI), which was designed to elicit from staff of health and social care services assessments of the level of satisfaction experienced by adults with an intellectual disability. Specifically, the EQLI's internal consistency, and construct, convergent and discriminant validity were analysed. RESULTS: The EQLI appears to be a psychometrically valid measure for collecting data on the levels of satisfaction which, according to health and social services staff, might be experienced by individuals with an intellectual disability who attend residential institutions and community-based day centres. The factor analyses supported a three-factor structure for the EQLI and reliability estimates of scores on the three factors were in the moderate to high range. The data collected supported convergent and discriminant validity. CONCLUSIONS: The results indicate that the EQLI is an effective measure for gaining staff perceptions of individuals who may be at risk of dissatisfaction with various QoL domains. The EQLI is as an instrument which, within a multidimensional assessment, could contribute to the identification of areas of user dissatisfaction with services.

Adolescent↗

PubMed1999

[Successful total laryngectomy in three cases with severe motor and intellectual disabilities syndrome for the management of repetitive lower respiratory tract infections].

Total laryngectomy was successfully performed for the management of repetitive lower respiratory tract infections in three cases with severe motor and intellectual disabilities syndrome. The patients were thirteen, ten and nine years of age and had cerebral palsy, mental retardation and epilepsy which resulted from neonatal asphyxia and seizures. To treat repetitive lower respiratory tract infections, the patients underwent the operation at the age of nine years and a month, seven years and six months, and six years and eleven months, respectively. Postoperatively, the respiratory tract infections were remarkably reduced for two to four years. Total laryngectomy is one of the best methods for the prevention of aspiration pneumonia, because it separates trachea and esophagus completely. The operation is indicated for children with influx of saliva into trachea and gastroesophageal reflux. The family should recognize that this operation causes permanent loss of voice and speech. The bronchoscopy, upper gastrointestinal tract barium studies and esophageal pH monitoring should be performed before the operation. Our cases fulfilled all of these indications. Laryngectomy should be considered as an effective method of respiratory management for cases of severe motor and intellectual disabilities syndrome, although its application should be carefully examined from the point of improvement of quality of life for patients.

Adolescent↗

PubMed2006

What am I doing in Timbuktu: person-environment picture recognition for persons with intellectual disability.

BACKGROUND: The aim of this study was to examine the effects of familiarity of depicted persons and environments in recognition of photographs for pupils with different degrees of intellectual disability (ID). METHOD: Forty-five pupils with ID participated. RESULTS: An interaction effect between the two variables, person and environment, was found in addition to main effects for both the variables. Pictures of the test person himself or herself in familiar environments were easier to recognize than in unfamiliar environments, whereas the opposite was found for pictures of other familiar persons. No interaction effects of degree of ID were found. CONCLUSIONS: The interaction pattern is explained in terms of absent, present or implausible semantic associations between the person and the environmental context. The results are discussed in relation to augmentative and alternative communication with photographs.

Adolescent↗

PubMed2001

Transfer and interference of motor skills in people with intellectual disability.

Atypical laterality (i.e. the lack of a clear pattern of lateralization) has been found to be a characteristic feature of individuals with intellectual disability (ID). The evidence for this has been based on 'handedness' studies which have contained little information about the ability of people with ID to carry out interhemispheric tasks reflecting bilateral transfer or interference. The present study examined this capacity in individuals with ID by utilizing bilateral transfer and interference paradigms. Right-handed subjects with ID (IQ = 55-76) and controls matched for age and sex were tested for bilateral transfer of motor skill in contralateral hands with a mirror-drawing task. The subjects were also tested for their ability to perform a finger-tapping task while processing verbal and non-verbal stimuli. The findings indicated that people with ID are significantly deficient relative to matched controls in bilateral transfer of motor skills from their non-preferred (left) hand to their preferred (right) one. The effect of interference during performance of the dual task was significantly greater in individuals with ID. Subjects with ID were found to perform better with their non-preferred than with their preferred hand. A within-group comparison revealed that right-handed performance was more affected by interference than left in these subjects.

Adolescent↗

PubMed1984

Waiting for Fairy Godmother--intellectual disability in Australia.

Since 1977 there have been at least 10 significant government reports on intellectual disability in Australia. Seven of the reports recommended major changes in the structure and organisation of service planning and delivery involving separation of services from health or mental health administrations. None of these recommendations has been implemented yet. This paper describes the process of the development of those reports, with particular attention to Victoria, and provides some suggestions why implementation has been so problematical.

Australia↗

PubMed2005

Parenting stress in mothers of children with an intellectual disability: the effects of parental cognitions in relation to child characteristics and family support.

BACKGROUND: Recent theories of stress and coping in parents of children with intellectual disabilities (ID) emphasize the importance of cognitive appraisals in influencing parents' levels of stress and their adaptations to difficulties presented by the children. This study investigated the relationships between parental cognitions, child characteristics, family support and parenting stress. The aspects of cognitions studied were: parenting self-esteem (including efficacy and satisfaction) and parental locus of control. METHODS: The group studied consisted of 46 mothers of children with ID. The Vineland Adaptive Behavior Scales and Maladaptive Behavior Domain were administered by interview. Mothers also completed four questionnaires: the Family Support Scale, the Parenting Sense of Competence Scale, a shortened form of the Parental Locus of Control Scale and the Parenting Stress Index (Short Form). RESULTS: Data were analysed using Pearson's correlation coefficients, partial correlations and a regression analysis. The results indicated that most of the variance in parenting stress was explained by parental locus of control, parenting satisfaction and child behaviour difficulties. Whilst there was also a strong correlation between family support and parenting stress, this was mediated by parental locus of control. CONCLUSIONS: The results demonstrate the potential importance of parental cognitions in influencing parental stress levels. It is argued that these results have implications for clinical interventions for promoting parents' coping strategies in managing children with ID and behavioural difficulties.

Adult↗

PubMed1998

Age-related fractures in people with intellectual disability and epilepsy.

The present paper describes age-related fractures in 68 people with intellectual disability and epilepsy (39 females and 29 males). A higher incidence of fractures in epileptic subjects (26%) was noted when they were compared with non-epileptic patients (15%). In the sample of 263 epileptics (121 females and 142 males), a higher number of females (32%) sustained fractures than their male counterparts (20%). The peak period of all fractures is between 40 and 49 years of age. The highest incidence of fractures in females occurred during the periods from 10 to 19 and 40 to 49 years, while the peak was between 30 and 39 years for males. The causes of fractures and preventative measures are discussed, and further avenues for research are indicated.

Adolescent↗

PubMedDate not supplied

Use of a computer-assisted program to improve metacognition in persons with severe intellectual disabilities.

Metacognition and self-regulation are processes extremely relevant to education of persons with intellectual disabilities. They play a central role in specific limitations, such as outer-directedness and lack of strategy transfer, and are related to desirable educational objectives such as self-determination. Although computer-assisted training has shown to be successful in training specific abilities and general cognitive processes, interventions of this nature centering on metacognitive development are rare. A computer-assisted program aimed in this direction is presented. It was applied to 21 adolescents and young adults with a mean IQ of 36. Metacognitive scores improved for this group at posttest relative to pretest to a degree significantly different from gains found in an equivalent control group. Improvement was clear from the first sessions of the intervention and was maintained at a 6-month follow-up.

Adult↗

PubMed2006

Neglect of people with intellectual disabilities: a failure to act?

Evidence from numerous studies strongly suggests that many people with intellectual disabilities have greater health needs and also have restricted access to health care compared to the general population. Given this evidence and that this has existed for some time, when does failure to act on this knowledge constitute a form of abuse? The motivation for this article emerged from both observations made during a wider study on abuse policies and practice and a growing awareness that abuse literature is not fully engaged with a broader definition of neglect. This article considers these issues with reference to the wider context of duties of care, freedom of choice and the attitudes of staff that shape responses to abuse. Practitioners are challenged to consider what can be done to overcome neglect with specific reference to the neglect of health needs.

Health Policy↗

PubMed2006

Prevalence and types of aggressive behaviour among adults with intellectual disabilities.

BACKGROUND: Aggressive behaviours represent major obstacles to the integration into society of individuals with intellectual disability (ID) and pose significant management issues for carers. METHODS: The present study assessed the prevalence and severity of five types of aggressive behaviours in 3165 adult men and women with ID receiving services from three rehabilitation agencies in Québec by surveying their carers using the Modified Overt Aggressive Scale. RESULTS: The 12-month prevalence of aggressive behaviour was 51.8%: 24% property damage, 37.6% verbal, 24.4% self-oriented and 24.4% physical aggression, and 9.8% sexually aggressive behaviour, most of which being mild in severity. Only 4.9% of individuals displayed aggressive behaviour leading to injury of the victim. Few gender differences were observed. CONCLUSIONS: The capacity to document and assess the types as well as the severity of aggressive behaviour is thus critical, not only to better understand the correlates of various types of behaviours but also to orient intervention programmes whether they be prevention, assessment, monitoring or management of aggressive behaviour.

Adolescent↗

PubMed2005

Patterns of emotional and behavioural disturbance associated with autistic traits in young people with severe intellectual disabilities and challenging behaviours.

Emotional and behavioural disturbance was assessed in 82 individuals with severe intellectual disabilities and challenging behaviour using the Diagnostic Assessment for the Severely Handicapped-II (DASH-II). Levels of disturbance were compared firstly in individuals with and without features of autism as assessed by the DASH-II, and secondly in individuals with varying severities of autism. In both cases levels of ability and overall severity of behaviour disorder were comparable across groups. Individuals with autistic features were found to have significantly higher scores than nonautistic individuals on the DASH-II organic disorder, anxiety, mania, PDD/autism and stereotypies subscales. When participants with autistic features were separated into groups of severe and moderate autism and compared with nonautistic participants, significant effects of group were found for scores on the anxiety, mood, mania, PDD/autism, schizophrenia and stereotypies subscales. Scheffé tests were conducted to further evaluate between-group differences. Item analysis showed seven DASH-II items to have a 30% or more difference between levels of endorsement in autistic and nonautistic individuals, with six further items showing a 20% or greater difference in levels of endorsement. Findings are compared to those from previous research and implications for the conceptualisation of emotional and behavioural disorders in individuals with autism are discussed.

Adolescent↗

PubMed2005

Self-reported anti-social behaviour: prevalence and risk factors amongst adolescents with and without intellectual disability.

BACKGROUND: Research has suggested increased risk of anti-social behaviour amongst individuals with intellectual disability (ID). METHODS: This study reports the results of a secondary analysis of data relating to self-reported anti-social behaviour, obtained from the 1999 Office for National Statistics (ONS) study of the mental health of children and adolescents in Great Britain. Self-report data from 4174 adolescents was available. Within this group, a sub-group of 98 adolescents with ID was identified. Data covered a variety of sub-types of anti-social behaviour. RESULTS: Comparisons of individuals with ID and those without ID indicated a significantly higher prevalence of a number of types of self-reported anti-social behaviour in the ID sample. Further analyses indicated however, that these between group differences were accounted for by the higher rates of social deprivation and child mental health problems among the ID sample. CONCLUSIONS: Rather than ID per se being associated with increased rates of anti-social behaviour, adolescents with ID may be more likely to experience risk factors (lower socio-economic status and mental health problems) known to be associated with anti-social behaviour. The clinical implications of this and possible future directions for research are discussed.

Adolescent↗

PubMed2004

Vision in athletes with intellectual disabilities: the need for improved eyecare.

BACKGROUND: Special Olympics provides sporting opportunities for people with intellectual disabilities (ID), and Lions Clubs International Opening Eyes GB offers vision screening for athletes at Special Olympics Games. METHODS: Opening Eyes GB screened the vision of 505 UK athletes at its inaugural event in 2001. The results were analysed and are presented here. RESULTS: Results showed that athletes do not differ from other people with ID in being at high risk of ocular and visual defects and many are not accessing eyecare. 15% reported never having an optometric eye examination, and yet 19% of these athletes had a significant refractive error, 32% had ocular anomalies and 6% were visually impaired. Overall, findings confirmed the high prevalence of refractive errors and strabismus amongst people with ID. 40% of athletes had ocular abnormalities, including 15.6% with blepharitis, a readily treatable condition that causes discomfort. 9% had lens opacities, of which half were probably impairing sight. An important finding was that many athletes have reduced vision and 14% could be classified as visually impaired (WHO definition) even when refractive errors were fully corrected. CONCLUSIONS: Special Olympics athletes should be encouraged to have regular eye examinations (as indeed, should all people with ID), and educators, carers and coaches need appropriate information about the visual status of their charges.

Adolescent↗

PubMed2005

Social skills in children with intellectual disabilities with and without autism.

BACKGROUND: Social skills were studied in 363 children with mild intellectual disabilities (ID) and 147 with moderate ID with and without autism (age 4 through 18). The objective was to investigate the value of the Children's Social Behaviour Questionnaire (CSBQ), as a measure of subtle social skills, added to a measure of basic social skills with the Vineland Adaptive Behaviour Scales (VABS), in identifying children with ID with or without autism. METHOD: Children with mild and moderate ID, with and without autistic symptomatology were compared on basic social skills, measured with the Communication and Socialization domains of the VABS, and subtle social skills, measured with the CSBQ. RESULTS: Measuring basic social skills is not sufficient in differentiating between levels of ID. Communicative skills and subtle social skills, that concern overlooking activities or situations and fear of changes in the existing situation, seem to play a far greater role. Additionally, with respect to identifying autistic symptomatology, basic social skills do not contribute, as opposed to communicative skills and the tendency to withdraw from others. CONCLUSIONS: The results implicate that the CSBQ not only has specific value as a measure of subtle social skills to identify pervasive developmental disorders, but that the instrument also has a specific contribution to differentiating between the two levels of ID. Furthermore, our outcomes imply a slight difference between limitations in subtle social skills as mentioned by the AAMR (American Association on Mental Retardation 2002) and limitations in subtle social skills as seen in milder forms of pervasive developmental disorders. Clinical and theoretical implications will be discussed.

Autistic Disorder↗

PubMed2003

Psychological treatment of reported sleep disorder in adults with intellectual disability using a multiple baseline design.

BACKGROUND: The literature on sleep disturbance in adults with intellectual disability (ID) is sparse. Although prevalence rates for sleep disorders appear similar to those of non-disabled populations, previous treatment studies have largely been comprised of uncontrolled cases. Therefore, the present study adopted a single-case experimental methodology to evaluate behavioural sleep intervention. METHODS: A screening questionnaire was posted to 384 adults with ID and the sleep pattern of respondents with possible sleep disorders was further assessed using a structured diagnostic schedule. From the sleep-disordered subgroup, 12 participants were selected for a 4-week behavioural sleep intervention that was evaluated using randomly allocated, multiple-baseline, across-subjects designs and within-subject interrupted time series analyses (ITSAs). RESULTS: A total of 155 adults with ID (83 females and 72 males; mean age = 32 years, SD = 16.5 years), or their carers, completed the questionnaire (return rate = 40%). The application of sleep diagnostic criteria revealed that 17% had clinically significant difficulty getting to sleep and 11% had difficulty remaining asleep. Nine out of the 12 participants recruited for the intervention completed all the experimental phases, thus providing three sets of three multiple-baseline designs. Visual inspection of within- and between-subject effects suggested beneficial treatment-specific effects across a range of target variables. The ITSA confirmed significant effects (P < 0.05) or trends (P < 0.10) for six out of the nine participants. CONCLUSIONS: Behavioural sleep management may improve sleep pattern or sleep-related functioning in the majority of adults with ID who have significant sleep problems. The single-case methodology is helpful in addressing the heterogeneity of individual presentation, although clinical trial methodology is required to confirm these findings on a larger scale.

Adult↗

PubMed2005

Assessment of anger coping skills in individuals with intellectual disabilities.

Recent controlled studies have supported the effectiveness of anger management training for people with intellectual disabilities (IDs). This report describes an evaluation instrument designed to assess their usage of specific anger coping skills. The Profile of Anger Coping Skills (PACS) is designed for completion by a staff member or carer. Three situations are first elicited in which a client frequently displays anger. The respondent then rates each situation for the extent to which the client deploys each of eight behavioural and cognitive coping skills. In a preliminary reliability study, 20 users of a day service for people with IDs were rated independently by two staff members, with one of them completing the assessment on two separate occasions: the PACS showed good test-retest reliability and lower, but still acceptable, interrater reliability. The PACS was subsequently used, in a different day service, as part of the assessment pack administered before and after a 12-week anger management group, with a parallel assessment of an untreated control group. The treated group showed substantial decreases in measures of anger, which were maintained at 6-month follow-up. Increases in PACS-rated anger coping skills were also seen in all participants in the anger management group, but not in the control group. There were differences in the extent to which different coping skills were acquired by the treated group, and there were also individual differences in the profile of specific skills acquired. It is concluded that the PACS is a reliable instrument for assessing anger coping skills, particularly when used repeatedly with the same informant. It provides information that is useful for both individual care planning and the design of future anger management programmes.

Adaptation, Psychological↗