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PubMedDate not supplied

Promoting health and home safety for children of parents with intellectual disability: a randomized controlled trial.

The objective of this study was to evaluate the efficacy of a home-based intervention targeted to parents with intellectual disability to promote child health and home safety in the preschool years. A total of 63 parents were recruited for the study with 45 parents (40 mothers and 5 fathers) from 40 families completing the project. The research design permitted comparison between the intervention and three alternative conditions with all parents receiving the intervention in an alternating sequence over the life of the project. The intervention consisted of 10 weekly lessons carried out in the parent's home focusing on child health and home safety. The program was adapted to suit the Australian context from the UCLA Parent--Child Health and Wellness Project (Tymchuk, Groen, & Dolyniuk, 2000). Outcome measures assessed parental health and safety behaviours. Standard measures included parental health, intelligence and literacy. The intervention improved parents' ability to recognize home dangers, to identify precautions to deal with these dangers and resulted in a significant increase in the number of safety precautions parents implemented in their homes with all gains being maintained at 3 months post-intervention. Parents' health behaviours including improved understanding of health and symptoms of illness, knowledge of and skills needed to manage life-threatening emergencies, knowledge about visiting the doctor, knowing when to call, what information to provide and what questions to ask, and how to use medicines safely significantly increased. Again, all gains were maintained 3 months post-intervention. The intervention was effective regardless of parental health, literacy skills, and IQ. This form of home-based intervention promotes a healthy and safe environment which is a prerequisite to continuing parental custody.

Adult↗

PubMed2004

Utilization of inpatient care and its determinants among persons with intellectual disabilities in day care centres in Taiwan.

BACKGROUND: In Taiwan, current understanding is limited concerning the manner in which health services are utilized by persons with intellectual disabilities (ID). The objective of this study is to describe the patterns of inpatient care sought by persons with ID, and factors affecting inpatient care utilization. METHOD: The primary method used in this study was a cross-sectional survey of 1390 persons with ID in day care centres. Data were obtained from responses to a questionnaire, copies of which were mailed to 30 day care centres catering for persons with ID. The questionnaire assessed demographic and health characteristics, disability status, and inpatient care utilization for the 12 months leading up to the survey. Multivariate logistic regression analysis identified factors independently associated with inpatient care. RESULTS: Findings indicated that the average age of the people with ID in the centres was 13.7 years. Fifty per cent of people were afflicted with multiple handicaps, with an average of 26 outpatient visits made per person during the 12 months, and 16% of persons having been hospitalized within the previous year. The average hospital stay was 6 days. Inpatient care was more likely to be used by those individuals with an ID who were younger, had multiple handicaps, required rehabilitation, and had other disabilities and existing illnesses. CONCLUSIONS: The study concluded that the parameters describing age of persons with ID, as having an existing illness, and requiring rehabilitative care were statistically significant in the logistic regression model of the inpatient care.

Adolescent↗

PubMed1999

Evaluation of a computer-aided system providing pictorial task instructions and prompts to people with severe intellectual disability.

The present study extended the evaluation of a computer-aided system providing pictorial instructions and prompts to promote task performance in people with severe intellectual disability. Four people were presented with two sets of tasks. The participants used the computer-aided system for one set and a card (control) system for the other. The results indicate that the computer-aided system was more effective than the card system with all participants. Three of the participants preferred the computer-aided system, while one favoured the card system.

Adolescent↗

PubMed2003

Genetic services for people with intellectual disability and their families.

This paper reviews the advances in molecular genetics over the recent years and discusses the impact it may have on those with intellectual disability and their families. The aim is not to present a comprehensive scientific treatise but rather to use illustrations from genetics to highlight our current thinking and draw attention to areas of uncertainty and misinformation. As our knowledge and understanding of the genetic basis of disease increases over the years, there may be significant benefits to some families, but the potential for discrimination against individuals on genetic grounds will also increase.

Cost of Illness↗

PubMed1997

The international consensus process on psychopharmacology and intellectual disability.

The present authors invited 115 scientists, practitioners and consumers from 11 nations to form an international consensus panel on best practices and clinical effects regarding psychoactive medicines and intellectual disability. Co-sponsors included the American Association on Mental Retardation, the American Psychiatric Association, the American Psychological Association, the National Institute of Mental Health, the National Association on Dual Diagnosis and The Arc of the United States. The panel developed 21 reports that were revised to reflect comments from 351 participants at a 1995 Ohio State University conference in Columbus, OH, USA. The reports will be published as chapters in a forthcoming book entitled Psychotropic Medication and Developmental Disabilities: The International Consensus Handbook. The need for research and training programmes is discussed.

Diagnostic Errors↗

PubMed2007

Longitudinal analysis of inpatient care utilization among people with intellectual disabilities: 1999-2002.

BACKGROUND: There has been no longitudinal study in Taiwan to identify the nature and the scale of medical care utilization of people with intellectual disabilities (IDs) up to the present. The aim of this study is to describe inpatient utilization among people under ID care in institutions in order to identify the pattern of medical care needs and the factors affecting utilization in Taiwan. METHOD: The subject cohort was 168 individuals with ID who were cared for by a large public disability institution from 1999 to 2002 in Taipei, Taiwan. RESULTS: On the examination of the inpatient care that these persons underwent, it was found that these individuals had a heightened need (inpatient rate: 10.1-14.9%) for inpatient care compared with the general population with disabilities (9.37%) in Taiwan. The main reasons for hospitalization were pneumonia, gastrointestinal disorders, cellulites, orthopaedic problems, epilepsy and bronchitis. Using the full model of Generalized Estimating Equations for inpatient care utilization, the factors including low income family, living in an institution, being a subject with cerebral palsy and being a high outpatient user all influenced the use of inpatient care. CONCLUSIONS: This study highlights that health authorities need to promote health planning more in order to ensure an excellent quality of health monitoring and health promotion among people with ID cared for by institutions.

Adolescent↗

PubMed2006

Standardised speech-language tests and students with intellectual disability: a review of normative data.

BACKGROUND: Before a school speech-language pathologist (SLP) utilises a standardised speech-language test with a student with intellectual disability (ID), the clinician should carefully consider the purpose of the test and whether the test includes students with ID in the normative group. METHOD: This project reviewed 49 tests published between 1994 and 2004 and their applicability to students with ID. RESULTS: Students with mild ID were included in the norm group for 23 of the tests, but no tests included students with more significant ID. Separate norms for students with mild ID were included in 15 tests, but none met Salvia & Ysseldyke's (1995) suggested requirement that at least 100 students be included to represent a specific subgroup. A majority of the tests assessed receptive and expressive vocabulary, syntax, and grammar but no recent test measured a student's pragmatic communication. CONCLUSIONS: Clinicians are encouraged to supplement standardised tests with non-standardised procedures to document students' pragmatic, social, and functional communication abilities.

Humans↗

PubMedDate not supplied

Synergistic effect of valproate coadministration and hypoalbuminemia on the serum-free phenytoin concentration in patients with severe motor and intellectual disabilities.

We investigated whether a combination of risk factors affects the free phenytoin (PHT) fraction by multiple regression analyses in 30 patients with severe motor and intellectual disabilities (SMID) with epilepsy. The risk factors analyzed were gender, age, total PHT concentration, albumin concentration, aspartate aminotransferase, alanin aminotransferase, serum creatinine, blood urea nitrogen, and antiepileptic drug concentrations. Serum levels of total and free PHT were measured by fluorescence polarization immunoassay. Free PHT fractions were between 7.2% and 17.3% (average 10.9%). Two factors, hypoalbuminemia and valproate (VPA) coadministratation with PHT, increased free PHT fraction, and a combination of these two markedly increased free PHT fraction. Patients with these double risk factors have a high risk of exceeding the therapeutic range of serum-free PHT concentration even if their total PHT concentration does not. Therefore, we should monitor free PHT concentration, especially in SMID patients with epilepsy, because they may have hypoalbuminemia and are treated with antiepileptic drug polytherapy and, moreover, cannot report adverse effects of the drugs.

Adolescent↗

PubMed2005

Can physical training have an effect on well-being in adults with mild intellectual disability?

The aim of this study was to investigate the effect of physical training on balance, strength, and general well-being in adult people with intellectual disability (ID). This study evaluated how physical training can effect physical and psychological change among 'older' adults with mild ID. Participants consisted of non-randomly selected groups with ID (n=22), between 54 and 66 years of age. Clinical balance functional tests were measured by a modified Timed Get-up and Go test and Functional Reach test. Knee muscles strength were measured on a Biodex dynamometer. The self-concept of well-being was measured by direct interview with a questionnaire consisting of 37 structural statements. Physical training program was conducted three times a week for six consecutive months. Multiple regression analyses suggested positive relations between balance, muscle strength, well-being and physical training between the experimental and control group. This positive relation can support the role and importance of physical training to improve locomotor performance and perception of well-being among 'older' adults with ID.

Activities of Daily Living↗

PubMed2001

Adjunctive gabapentin in patients with intellectual disability and bipolar spectrum disorders.

The aim of the present study was to assess the efficacy of adjunctive gabapentin (GBP) in the treatment of patients with intellectual disability (ID) and bipolar spectrum disorders. Ten affected subjects with demonstrable increases in symptomatology during 'significant' life events which had interfered with or induced the interruption of their rehabilitation programmes were chosen for this study. The meaning of 'significant' was defined for each patient as a frequently repeated life event which had elicited a marked increase in symptoms on at least two occasions. Gabapentin (300-900 mg day-1) was added to the standard therapy. The subjects' psychopathological conditions during the significant life event were assessed by means of standardized tools both before and after adjunctive therapy with GBP. A positive response to therapy was observed, with subsequent improvement of psychopathological conditions, particularly for anxiety and depressive symptoms. The promising results obtained with GBP suggest the need for further trials. Adjunctive GBP may become an alternative treatment approach for patients with ID in whom traditional mood-stabilizing agents have frequent contraindications.

Acetates↗

PubMed2001

Factors associated with expressed satisfaction among people with intellectual disability receiving residential supports.

The aim of the present study was to identify factors associated with variations in the levels of expressed satisfaction among adults with intellectual disability (ID) receiving residential supports. Semi-structured interviews were conducted with 96 people with ID. Forty-five subjects lived in village communities and 51 received community-based residential supports. Ratings were made of the participants' expressed levels of satisfaction in seven domains: (1) their home; (2) daytime activities; (3) social and recreational activities; (4) support from services; (5) friendships and relationships; (6) choices available to them; and (7) risks. The data indicated that: (1) interviewees living in village communities expressed greater satisfaction with friendships and relationships than interviewees living in community-based residential supports; (2) in the other six domains of life satisfaction which were investigated, there were no statistically significant differences between groups; (3) interviewees expressed greater satisfaction with their accommodation and day activities than with friendships, risks and support received; and (4) a wide range of variables relating to the personal characteristics of the interviewees and support received were associated with variations in levels of expressed satisfaction. Variation in the levels of expressed satisfaction was reliably associated with variables relating to the personal characteristics of the interviewees and the nature of the support received.

Adult↗

PubMed2006

Self-reports on mental health problems of youth with moderate to borderline intellectual disabilities.

OBJECTIVE: To determine the extent to which the Youth Self-Report (YSR) can be used to assess emotional and behavioral problems in adolescents with intellectual disabilities (IDs). METHOD: In 2003, 281 11- to 18-year-olds with IDs (IQ > or =48) completed the YSR in an interview, and in 1993, 1,047 non-ID adolescents completed the YSR themselves. Parents completed the Child Behavior Checklist (CBCL). The ID sample was split into lower (IQ 48-69) and higher (IQ > or =70) IQ groups. Cronbach's alpha values of the YSR scales and (intraclass) correlation coefficients between and within YSR and CBCL scale scores were calculated to determine parent-adolescent agreement and YSR construct validity, which were compared between samples. Mean YSR scale scores were compared between adolescents with ID with and without psychiatric symptoms. RESULTS: Cronbach's alpha, parent-adolescent agreement, and indications of construct validity were about similar in all samples, although discriminant validity was somewhat weaker in the lower IQ group. Mean scale scores were 1.5 to 2.0 times higher for ID adolescents with psychiatric symptoms. CONCLUSIONS: The YSR seems applicable in youth with an IQ > or =48. Further research is needed to refine and confirm these findings and the factor structure of the YSR in adolescents with ID and to differentiate between adolescents with moderate and mild IDs.

Adolescent↗

PubMed2002

Attitudes of Japanese students toward people with intellectual disability.

BACKGROUND: The purpose of the present study was to gain insight into the structure and organization of the attitudes of Japanese students toward people with intellectual disability (ID). The study also examined how these attitudes are related to individual characteristics, such as experience with people with ID, major field of study and career interests. METHODS: The participants completed a series of measures developed in the USA: three measures of attitudes toward people with ID, a demographic questionnaire and a social desirability scale. Students completed the measures anonymously. RESULTS: The factor structures of all three attitude scales replicated the structures found in the USA. Attitudes toward the community inclusion of people with ID were negatively correlated with an endorsement of eugenics. Students in social work and psychology had more positive attitudes than other students. Participants who expressed an interest in a career working with people with ID had more positive attitudes than students with no interest in such a career. CONCLUSIONS: Attitude measures developed in the USA can be used in Japan, and can provide useful information as well as an opportunity for cross-cultural comparisons. For a more complete understanding of the attitudes of Japanese people toward people with ID, these attitudes should also be studied using measures based in Japanese culture which have specifically developed to measure attitudes in Japan.

Attitude to Health↗

PubMed2003

[Lithium intoxication in a patient with severe motor and intellectual disabilities].

A severaly retarded 30-year-old woman developed acute lithium intoxication. Since the age of 22, she had been treated with neuroleptics for her aggressive behavior. At 30 years of age, lithium carbonate was added to arrest self-injurious behavior, at an initial dosage of 300 mg/day and a maintenance dosage of 900 mg/day. She subsequently developed anorexia and weight loss, and was admitted to our hospital. After 7 months of lithium therapy, she suddenly had a high fever (38.3 degrees C), diabetes inspidus, severe hypernatremia, and became akinetic and mute. Under the suspicion of lithium intoxication, all medication was discontinued, and mannitol to increase renal lithium clearance. She was given gradually improved over a month, but remained hypothyroid. This case shows the importance of interaction of lithium carbonate and other drugs which may cause lithium intoxication. In patients with severe intellectual disabilities who are unable to complain their symptoms, lithium therapy requires particularly close attention to signs of early toxicity.

Adult↗

PubMed2006

Measuring quality in services for children with an intellectual disability.

PURPOSE: To evaluate the application of one particular quality measurement tool, the SERVQUAL instrument, as a potential mechanism to measure quality in services for children with disabilities DESIGN/METHODOLOGY/APPROACH: Staff and family of children with an intellectual disability in two organisations providing specialist therapy and day completed an adapted SERVQUAL questionnaire. A total of 81 SERVQUAL questionnaires were distributed and 59 questionnaires were returned (response rate of 73 per cent). FINDINGS: The SERVQUAL instrument can be considered as a useful diagnostic tool to identify particular strengths and areas for improvement in services for people with disabilities as the instrument lends itself for the monitoring of the effectiveness of quality improvement initiatives over time. The findings also showed relatively high customer expectations and the organisations involved in this research are currently not meeting all of these high expectations as significant quality gaps were found in the areas of reliability and responsiveness. RESEARCH LIMITATIONS/IMPLICATIONS: The sample size was relatively small and the measurement of quality using the SERVQUAL instrument remains a challenge, due to the conceptual and empirical difficulties. PRACTICAL IMPLICATIONS: The SERVQUAL instrument is probably most be attractive to service managers and funding organisations because of its ability to identify gaps in the quality of the service. ORIGINALITY/VALUE: The tool had been used to measure quality in services for people with disabilities and the research has shown that this tool might be an important additional quality measurement tool for services.

Child↗

PubMed2026

Intellectual disability, neuroregression and adult-onset progressive dystonia due to a DLG4 pathogenic variant.

We report a 34-year-old male with childhood developmental delay, severe intellectual disability in adulthood, episodes of agitation with a previous diagnosis of schizoaffective disorder and adult-onset cognitive regression who developed progressive generalised dystonia due to a de novo DLG4 pathogenic loss-of-function variant. This case expands the phenotypic spectrum of recognised movement disorder manifestations associated with DLG4-related synaptopathy.

Humans↗

PubMed2004

The association between severity of intellectual disability and psychiatric symptomatology.

BACKGROUND: Mental illness is more prevalent in people with intellectual disabilities (ID) than in the normal population. The association between mental illness and severity of ID is also of importance in the understanding and treatment of maladaptive and challenging behaviours. The aim of this study was to investigate the association between severity of ID and prevalence of mental illness. METHODS: Using the Mini PAS-ADD, an instrument designed to identify psychiatric symptoms in people with ID, informants were interviewed about the presence of symptoms in 96 participants with moderate, severe and profound ID, and asked about the use of psychotropic medication. RESULTS: Mental illness, particularly anxiety, depression and psychosis, was far more prevalent in participants with moderate ID than in people with severe and profound ID. The use of psychotropic medication was not significantly different between the groups. CONCLUSIONS: The prevalence of psychiatric illness decreases with severity of ID. The usefulness of psychiatric illness models, in explaining maladaptive and challenging behaviours, also decreases with severity of ID. Drug treatment may become more complicated, and behavioural and environmental interventions may become relatively more important, as severity of ID increases.

Adult↗

PubMed2006

Do social information-processing models explain aggressive behaviour by children with mild intellectual disabilities in residential care?

BACKGROUND: This study aimed to examine whether the social information-processing model (SIP model) applies to aggressive behaviour by children with mild intellectual disabilities (MID). The response-decision element of SIP was expected to be unnecessary to explain aggressive behaviour in these children, and SIP was expected to mediate the relation between social schemata and aggressive behaviour. METHOD: SIP and aggressive behaviour of 130 10- to 14-year-old children with MID in residential care were assessed. The fit of various SIP models was tested with structural equation modelling. RESULTS: The response-decision process was found not to be necessary to explain aggressive behaviour. Social schemata were indirectly related to aggressive behaviour with aggressive response generation as mediating variable. CONCLUSIONS: Implications for SIP theory and intervention are discussed.

Adolescent↗