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PubMed1998

Carbamazepine in the treatment of epilepsy in people with intellectual disability.

Carbamazepine is a major antiepileptic drug which is primarily used to treat epileptic patients suffering from partial seizures with or without secondary generalization, but which also has applications in those suffering from primary generalized tonic-clonic seizures. Besides its antiepileptic effect, carbamazepine is also indicated in the treatment of trigeminal and occipital neuralgia, and in manic depressive disorders. Because of its minimal unwanted effects on cognition and behaviour, carbamazepine is an excellent drug for the treatment of people with intellectual disability and epilepsy. Carbamazepine is still one of the most commonly prescribed medications in the treatment of epileptic disorders.

Anticonvulsants↗
PubMed2005

Reflection on SARS precautions in a severe intellectual disabilities hospital in Hong Kong.

BACKGROUND: Hong Kong went through a battle with a new respiratory disease, severe acute respiratory syndrome (SARS), from March to June 2003. All clinical settings, including rehabilitative and infirmary setting, have actively involved in fighting against the infection. The intent of this paper was to reflect on the SARS precautionary measures that had been taken in a severe intellectual disabilities hospital in Hong Kong. METHODS: A review on six SARS precautionary measures were conducted. They were assessment of risk, formulation of operational guidelines, implementation of infection control measures, education and training of staff, conducting audits and carrying out environmental improvement work. RESULTS: Patients were at risk of getting infected from carers, visitors, volunteers, and staff and patients of general hospitals. A SARS Quarantine Unit, isolation ward, was opened to isolate patients who might have had close contact with SARS patients during a stay in a general hospital or when they returned from home leave. Undoubtedly, both staff and relatives participated in preventing the patients from being infected. No day leave and home leave was reported and the number of hospitalization in general hospital was decreased during the critical period. Three infection control audits were conducted and improvement work was carried out subsequently. CONCLUSION: The practice of grouping within a standard isolation room is recommended to continue in the future. Moreover, intensive infection control training for all staff is of highest importance to safeguard the health of both staff and patient.

Environment↗
PubMed2005

Facilitating self-determination in adolescents with intellectual disabilities: a curriculum.

Taking an active part and responsibilities in one's own life is not always easy, particularly at adolescence, which is a very important period in which people progressively find their identity and life project. This article describes the social validation analyses of a Belgian self-determination curriculum that was adapted from a French-Canadian curriculum. It was done with the participation of adolescents with intellectual disabilities, teachers, and experts from the field. Overall, results indicate a satisfying to very satisfying appreciation of the social utility of the training manual. The findings also highlighted that the curriculum actually supports the conceptual framework of self-determination.

Adolescent↗
PubMed2005

Associations of social support and hardiness with mental health among mothers of adult children with intellectual disability.

BACKGROUND: The study was conducted with mothers of adult children with developmental disabilities and had two aims: (1) to examine the mental health, resources and stress among mothers who keep their adult child at home vs. those who choose placement in a community arrangement; and (2) to assess the associations of mothers' resources and stress with mental health. METHOD: A sample of 100 mothers (mean age 60.67 years) of adult children with intellectual disability, 50% of whom had been placed in a community arrangement were asked to complete questionnaires measuring mental health, stress, hardiness and social support. RESULTS: The comparisons between mothers who had placed their adult child in a community arrangement and those who had kept their child at home showed no significant differences for most indicators. Mental health, stress, hardiness and social support were highly intercorrelated, as expected, and hierarchical regression analyses indicated independent effects of stress, hardiness and out-of-home placement on mental health. CONCLUSIONS: The findings suggest that strengthening personal and social resources of mothers of adult children with developmental disabilities may be beneficial for their mental health.

Adult↗
PubMed2005

A survey of off-label prescribing for inpatients with mild intellectual disability and mental illness.

BACKGROUND: The term 'off-label prescribing' refers to the use of a drug outside the terms of its Marketing Authorisation, including prescribing for an unlicensed indication. There have been few reports about off-label prescribing in psychiatry. The aims of the study were to determine the frequency of off-label prescribing of psychotropics for inpatients with mild intellectual disability (ID) and mental illness resident in a large psychiatric hospital, the nature of the off-label clinical indications and details about patient consent and case note documentation of the off-label usage. METHODS: Cross-sectional survey of inpatients of the ID division of a charitable hospital was carried out. Interviews with consultant psychiatrists about off-label use of psychotropics were also made. RESULTS: Of the 56 patients studied, 38 (67.9%) were receiving one or more psychotropic drugs and 26 (46.4%) were receiving at least one off-label psychotropic. The most frequently cited off-label indications were: reduction of aggression, arousal and behavioural disturbance (14 cases) and mood stabilization of affective disturbance (13). The principle psychotropics involved were atypical antipsychotics (17 cases) and mood stabilizers (13). Although in most instances the psychiatrist was aware the drug was being used off-label and had consulted other professionals, in only two (6%) instances had the patient been informed of the off-label usage, largely because the psychiatrist felt they lacked the capacity to understand the off-label concept. In most cases the off-label usage had not been documented in the case notes. CONCLUSIONS: Off-label prescribing is common in patients with comorbid ID and mental disorder. When prescribing off-label, psychiatrists need to consider the evidence that the drug is likely to be effective for the unlicensed indication and any risks involved. Where there is limited evidence of benefit a trial of the drug, with clinical monitoring may be indicated. Patients should be fully informed about their medication. However, many patients with ID cannot understand the off-label concept. In some circumstances psychiatrists may find it helpful to consult other professionals before prescribing off-label. Good case note documentation of the process is important and supports the prescriber.

Adolescent↗
PubMed2004

Autism and intellectual disability: a study of prevalence on a sample of the Italian population.

BACKGROUND: In 1994, the American Association on Mental Retardation with the DSM-IV has come to a final definition of pervasive developmental disorders (PDD), in agreement with the ICD-10. Prevalence of PDD in the general population is 0.1-0.15% according to the DSM-IV. PDD are more frequent in people with severe intellectual disability (ID). There is a strict relationship between ID and autism: 40% of people with ID also present a PDD, on the other hand, nearly 70% of people with PDD also have ID. We believe that in Italy PDD are underestimated because there is no agreement about the classification system and diagnostic instruments. METHOD: Our aim is to assess the prevalence of PDD in the Italian population with ID. The Scale of Pervasive Developmental Disorder in Mentally Retarded Persons (PDD-MRS) seems to be a very good instrument for classifying and diagnosing PDD. RESULTS: The application of the PDD-MRS and a clinical review of every individual case on a sample of 166 Italian people with ID raised the prevalence of PDD in this population from 7.8% to 39.2%. CONCLUSIONS: The study confirms the relationship between ID and autism and suggests a new approach in the study of ID in order to elaborate a new integrated model for people with ID.

Adolescent↗
PubMed2005

Quality of life for people with intellectual disabilities in China: a cross-culture perspectives study.

BACKGROUND: The concept of quality of life (QOL) is explained on the basis of traditional Chinese culture and contemporary social and cultural trends. METHOD: The importance of internationally recognized QOL domains and indicators was determined for three respondent groups: consumers, parents of the consumers, and teachers and rehabilitation professionals working with the clients. RESULTS: Principal component analysis confirmed seven factors influencing QOL for people with intellectual disabilities (ID) in China. These seven components are conceptually equivalent to the eight domains found in the international QOL literature. CONCLUSION: The concept of QOL has become one of the most sensitive issues in present Chinese society and peoples' lives, and an important theoretical framework for the education and rehabilitation for people with ID in several ways: curriculum development, service delivery models, education and rehabilitation practices, and employment models.

Adult↗
PubMed2005

Staff in services for people with intellectual disabilities: the impact of stress on attributions of challenging behaviour.

BACKGROUND: There is a lack of a conceptual framework as to how stress and attribution variables interact and influence staff behaviour in response to challenging behaviour. To address this, a model is tested examining the impact of stress on attributions of challenging behaviour within Weiner's model of helping. METHOD: A total of 107 staff working in community homes for people with intellectual disabilities completed a self-report questionnaire that measured stress, burnout, attributions, emotions, optimism and helping behaviour in response to challenging behaviour. RESULTS: Partial support was found for the role of attributions and emotions. However, although staff reported high stress levels and moderate burnout, this did not appear to relate to their reporting of thoughts and feelings regarding challenging behaviour predicted by Weiner's helping model. It was not possible to fully test the helping model, as the 'help' variable was not normally distributed. CONCLUSIONS: There was little evidence to suggest that stress has a primary role in determining staff responses when examined within Weiner's model of helping. Limited support in general was offered for Weiner's helping model. Potential conceptual difficulties and clinical implications are explored and alternative models for future research are discussed.

Adult↗
PubMed2003

From research and development to practice-based evidence: clinical governance initiatives in a service for adults with mild intellectual disability and mental health needs.

BACKGROUND: Practice-based evidence represents the contribution of practitioners who utilize research methodologies to examine the quality of their clinical practice and service provision. METHODS: The present paper describes the evolution of a routine practice-based evidence system (PBES) via four phases of research and development. The four phases are described, as is their relevance to assessment and intervention with regard to the mental health problems of people with mild intellectual disability. Phase four describes the development of a routine PBES. RESULTS: The PBES is capable of profiling the individual mental health needs of service users and examining service effectiveness and quality at an organizational level. CONCLUSIONS: The PBES is discussed according to its current utility and possible directions for future development. The system is presented as an example of clinical governance that could be utilized by multidisciplinary teams to develop and maintain an organizational culture of quality.

Evidence-Based Medicine↗
PubMed1998

The characteristics and residential situations of people with severe intellectual disability and the most severe challenging behaviour in Wales.

A total population study of people in Wales with severe intellectual disability and the most severe challenging behaviour was undertaken to identify their characteristics, and the nature of their residential arrangements and service support. Forty-one participants were identified: five living in family homes, 17 in community housing, 17 in hospitals and two in hostels. The family home group had slightly higher adaptive behaviour scores than residents in community housing. Both groups had significantly higher scores than the hospital and hostel residents combined. Assessments of challenging behaviour showed the groups to be similar and to have a considerable range and extent of severely problematic behaviour. Co-occurrence of several forms of frequent severe problem behaviour was the norm and there was a marked association with social impairment. The five people living in their family homes had nominated service keyworkers, but reported professional input was low. The residential situations comprised two main service types: (1) traditional services, which were characterized by large living unit and facility size, atypical architectural design, relative isolation from the community, a greater level of buildings adaptations, low staff:resident ratios, a relatively high percentage of qualified staff, and a relative absence of systematic approaches to goal planning and structured activity; and (2) new community houses, which were characterized by small size, domestic design, location within the community, a lower level of buildings adaptations, much higher staff:resident ratios, and less emphasis on qualified staff but a greater emphasis on systematic working methods. Community settings were similar in having 'specialist' resident groupings based on challenging behaviour or conditions like autism in which challenging behaviours are common. A policy to provide for people with these characteristics being resettled from traditional settings in this way seems to have been established.

Adult↗
PubMed2002

People with intellectual disability, sensory impairments and behaviour disorder: a case series.

BACKGROUND: Sensory impairments (SIs) are more prevalent in people with intellectual disability (ID). Both conditions lead to higher rates of emotional and behavioural problems than in the general population. The identification of psychiatric disorders in this group can be difficult, particularly in those with severe ID and limited communication skills. METHOD: The present paper presents a series of 18 case reports of individuals with ID, SI and behavioural problems. RESULTS: The majority of cases were young male caucasians with congenital rubella syndrome and autistic spectrum disorder, referred because of self-injurious behaviour (SIB) or aggression. Nine cases were treated with autidepressants, five underwent environmental changes and two had medication reduced. All showed some improvement. CONCLUSIONS: The benefits of comprehensive assessments, the use of standardized assessment tools and trials of treatments are discussed in the context of making psychiatric diagnoses.

Adult↗
PubMed2006

[Assessment of families' need of social life support for persons with intellectual disabilities and physical handicaps].

To study the need for community support for the users of facilities for people with intellectual disabilities and physical handicaps, the author surveyed facility users' families using a mail-in questionnaire. The International Classification of Functioning, Disabilities and Health (ICF) guidelines were used to describe each user. Younger users were found to achieve the best ICF levels of social participation, while rehabilitation facilities and workshops attracted a larger number of adults with fixed participation whose performance level was equivalent to their capacity. In the latter group, the users' families requested accommodation at a group home and the continuous use of the facilities. Among the respondents, a demand for medical support was common, regardless of the type of facilities being used. To support self-decision and the full participation of users, the supervisors of facilities must coordinate their own needs with those of users and their families and provide improved medical support.

Child↗
PubMed1998

Valproate in the treatment of epilepsy in people with intellectual disability.

Valproate is a major broad-spectrum antiepileptic drug effective against many different types of epileptic seizures. Valproate is a first-line drug in the treatment of primary generalized seizures and syndromes, but it is also effective in other seizure and epilepsy types. The possible mechanisms of action and the pharmacokinetics of valproate are outlined. A limited number of studies on the efficacy and safety of valproate treatment in patients with West syndrome and Lennox-Gastaut syndrome have shown that even therapy-resistant people with intellectual disability can benefit from add-on valproate medication. In status epilepticus, valproate can be effective either intravenously, by gastric drip or following rectal administration. Patient tolerance towards valproate is generally good. The most serious adverse effect of valproate include hepatotoxicity and teratogenicity.

Anticonvulsants↗
PubMed2003

Automatic blink detection: a method for differentiation of wake and sleep of intellectually disabled and healthy subjects in long-term ambulatory monitoring.

OBJECTIVES: To develop a method for automatic detection of blinks in electrooculograms and to evaluate reliability of blink rate as an indicator of wake and sleep in subjects with developmental brain disorders. DESIGN: Categorization of wake and sleep by blink rate was compared with visual sleep scoring of the polysomnograms. SETTING: Ambulatory polysomnographic recordings at home or in the sleep laboratory. PARTICIPANTS: Nine healthy volunteers for calibration, 10 for validation; 7 intellectually disabled patients for calibration, 10 for validation of the method. INTERVENTIONS: N/A. MEASUREMENTS AND RESULTS: Blinks were detected from electrooculograms using a weighted finite impulse response median hybrid filtering and the criterion of minimum duration at amplitude threshold. More than 80% of the visually identified electrooculographic blinks were detected in most subjects. When 30-second epochs of electrooculograms with 1 or more blinks were defined as wake and those without blinks as sleep, the average agreement with polysomnographic scoring was 95% in healthy subjects and 84% in patients. The mismatch was mostly due to the 30-second epochs without blinks during waking. A contextual redefinition of wake and sleep by expanding the inspected electrooculographic span from 1 to 20 epochs (10 minutes) increased the agreement to 93% in patients. The agreement is comparable to that of actigraphy with polysomnography. The linear correlation coefficient of the proportions of sleep epochs between visual scoring and the contextual blink rate method was 0.869. The main sleep periods detected by the blink-rate method were an average of 7 minutes longer than those determined by visual scoring. This was caused by differences in the detection of sleep onsets: blinking ceased before the first stage 1 sleep period was scored. The absolute period lengths obtained by the 2 methods did not differ significantly from each other in unpaired t-tests, and the linear correlation between the values was 0.999. CONCLUSIONS: The blinks extracted from the electrooculographic signal can be used to reliably determine the main sleep and wake periods in both healthy subjects and patients with developmental brain disorders.

Adult↗
PubMed2006

Seroepidemiological study of toxoplasmosis in intellectual disability children in rehabilitation centers of northern Iran.

Serological studies revealed that toxoplasmosis has world wide distribution. Although the infection by Toxoplasma gondii is widely prevalent in humans and animals, the disease is uncommon and most of the acquired infections are asymptomatic. The important aspect of this parasitic infection is the probable danger of congenital transmission and its severe effects on the fetus. There have been many reports about the prevalence of anti-T. gondii antibody among different groups of people in Iran; however the epidemiological data in intellectual disability (ID) persons are rare. This study was performed to evaluate the seroprevalence of toxoplasmosis among the inhabitants of rehabilitation centers of northern Iran. A total of 336 serum samples (161 males, 175 females) were examined for the IgG antibodies by indirect immunofluorescense technique. First of all, 1:50 titer dilution was tested, in the cases of positive result, further dilutions (1:100, 1:200, 1:400, 1:800, 1:1600, and 1:3200) were prepared and the last dilution was recorded. Among 336 sera, 77.4% showed seropositivity by IFAT. The positive rates of males and females were 77.6% (125/161) and 80% (140/175), respectively. However, there were no significant differences between sexes. Comparing the age groups, the highest seropositive rate showed in 19 or higher, and their rates had a tendency to increase with age. Prevalence of the infection in 10 rehabilitation centers was not significant either. Nevertheless, our data (77.4%) in rehabilitation centers in northern Iran suggest that infection is the same as in many other reports in normal population in this area, therefore toxoplasmosis is not a major problem in rehabilitation centers of this geographical area.

Adolescent↗
PubMed2006

A revised sexual knowledge assessment tool for people with intellectual disabilities: is sexual knowledge related to sexual offending behaviour?

BACKGROUND: The aim of the current study was to update an existing short measure of sexual knowledge and generate some initial reliability and normative data. Comparisons of sexual knowledge across several groups were made to examine whether or not a lack of sexual knowledge is related to sexual offending. METHODS: The Bender Sexual Knowledge Questionnaire (BSKQ) was revised, and a new questionnaire, the General Sexual Knowledge Questionnaire (GSKQ), was created and administered to four groups of participants: (1) sex offenders with an intellectual disability (ID) and a history of engagement in treatment (n = 12); (2) sex offenders with an ID and no history of treatment (n = 13); (3) non-offenders with an ID (n = 28); and (4) non-offenders without an ID (n = 10). Between-group comparisons were made; internal consistency, split-half reliability and correlations were examined. RESULTS: The internal consistency and the split-half reliability of the entire questionnaire was good. Non-offenders without an ID scored significantly higher than non-offenders with an ID on all sections of the GSKQ. Sex offenders who had undergone treatment scored significantly higher than non-offenders with an ID on several sections of this questionnaire. CONCLUSIONS: The initial findings from this study suggest that the psychometric properties of the GSKQ are promising. The assumption that lower sexual knowledge may be related to the risk of committing a sexual offence by people with IDs is possibly erroneous, and further research is required to clarify this possibility.

Adult↗
PubMed2006

Objective investigation of the sleep-wake cycle in adults with intellectual disabilities and autistic spectrum disorders.

BACKGROUND: Disturbances in circadian rhythm functioning, as manifest in abnormal sleep-wake cycles, have been postulated to be present in people with autistic spectrum disorders (ASDs). To date, research into the sleep-wake cycle in people with ASDs has been primarily dependant on third-party data collection. METHOD: The utilization of non-invasive objective recording technologies such as actigraphy permits investigation of both sleep and circadian rhythm functioning in people with ASDs, together with the collection of data on daytime activity. RESULTS: Data were collected from 31 participants with intellectual disabilities living in supported community-based residential provision aged between 20 and 58 years, of whom 14 had an ASD. Analysis indicated that there were no significant differences in sleep patterns and circadian rhythm function between those participants with an ASD and those without. CONCLUSIONS: The mean scores of the participants as a whole indicated abnormalities in the two key circadian rhythm parameters of interdaily stability and intradaily variability. The implications of these findings for both clinical practice and theory are discussed.

Adult↗