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PubMed1999

Organizational culture and staff outcomes in services for people with intellectual disabilities.

Organizational culture has been shown by organizational psychology to influence important aspects of staff behaviour. In particular, mismatches between staff perceptions of real and ideal organizational cultures have been shown to be associated with a range of negative outcomes for staff, such as stress, sickness and staff turnover. The present study investigates organizational culture in services for people with intellectual disabilities. The aim was to discover the prevalent organizational cultures in these services, and associations between organizational culture and staff outcomes. As part of a large-scale survey of staff in services for people with intellectual disabilities, information concerning organizational culture and staff outcomes was collected from 450 staff. A self-report measure of real and ideal organizational culture produced nine dimensions of organizational culture: (I) tolerant/staff-oriented; (2) achievement-oriented; (3) innovative; (4) analytical; (5) social relationships; (6) rewarding staff; (7) stable work environment; (8) demanding; and (9) conflict management. These nine dimensions of organizational culture showed generally adequate psychometric properties. While there was some variation in organizational culture across services, there is little variation across staff with different job titles. Overall, the staff rated real organizational cultures to be relatively high in achievement orientation and fostering social relationships, and relatively low in managing conflict and providing rewards for staff. Staff rated ideal organizational cultures to be high in rewarding staff, being tolerant/staff-oriented and fostering social relationships, and low in demands on staff. Except for the dimension of making demands on staff, where staff rated organizations as considerably higher than ideal, staff generally rated organizations as being less than ideal on all dimensions of organizational culture. Organizational psychology theory predicts that poor 'person-organization fit' (i.e. a greater mismatch between real and ideal organizational culture) will be associated with a range of negative staff outcomes. This theory was largely supported by findings of the present study. The implications for practice and for future research are discussed.

Adaptation, Psychological↗

PubMed2004

Sex offenders with an intellectual disability.

It is only in recent years that the myth of the incorrigible and untreatable sex offender with an intellectual disability has been seriously questioned. Current assessment and treatment approaches in this area assume that such offenders are accountable for their actions and treatable with appropriately modified techniques. Even though they may be initially hard to engage in the assessment and treatment process, the use of simplified approaches that support the day-to-day reinforcement of treatment concepts is proving to be effective with this population.

Adult↗

PubMed1992

The administration of psychotropic and anticonvulsant drugs to children with profound intellectual disability and multiple impairments.

A national (England and Wales) postal survey of families with a son or daughter with profound intellectual disability and multiple physical and sensory impairments who lived at home was undertaken. A section of the questionnaire dealt with prescription of major tranquillizers, drugs with a sedative function, anticonvulsants and stimulants, while among other variables information was also collected on sex, age, behaviour problems, sleep difficulties and epilepsy. Of children and adults: 5.3 and 7.9%, respectively, were receiving major tranquillizers; 28.5 and 24.5%, respectively, were prescribed drugs with a sedative function; and 53.4 and 52.7% were in receipt of anticonvulsants, with no individuals in receipt of stimulants. Only 1.5% of the total sample received major tranquillizers, drugs with a sedative function and anticonvulsants, though 18.9% were prescribed drugs from two classes, notably drugs with a sedative function and anticonvulsants. In all, 66.3% of the combined child and adult samples received at least one drug from the classes investigated. No sex bias in prescribing was found. Receipt of major tranquillizers bore some relation to reported behaviour problems, while administration of sedatives and anticonvulsants were related respectively to reports of sleep problems and occurrence of epilepsy.

Adolescent↗

PubMed2006

Epilepsy in adults with intellectual disabilities: prevalence, associations and service implications.

STATEMENT OF THE PROBLEM: The prevalence of epilepsy in people with an intellectual disability (ID) is apparently higher than in the general population. The outlook for individuals with both epilepsy and ID depends on the presence of any associated conditions. However, there have been few epidemiological studies of the prevalence of epilepsy and associated problems within a representative adult ID population to inform the development of policy. METHOD: This was a population-based prevalence study using the Leicestershire Learning Disability Register. Prevalence was estimated from the number of individuals with reported epilepsy identified from structured home interviews with carers. Associations with epilepsy were investigated for a range of defined physical, mental and skill attributes. Logistic regression was done with and without adjustment for age, sex and level of understanding to identify specific and holistic links respectively. RESULTS: The prevalence of epilepsy was 26%. Among those with epilepsy, 68% experienced seizures despite anti-epileptic medication. Epilepsy showed a significant association with low levels of understanding. Specific morbid associations included wetting (adjusted odds ratio 2.7), soiling (2.2), walking (2.5), daily living skills (1.6), poor speech (2.2), lack of empathy (1.5), mood swings (1.5), being uncooperative (1.6), seeking attention (1.7) and disturbing others at night (1.9). Holistic associations included a wider range of physical and mental problems and global skills deficits. CONCLUSIONS: The high prevalence, associated morbidities and global skills deficits make epilepsy care for adults with ID important and complex. Specialist epilepsy services for this population need a multidisciplinary skills mix.

Adult↗

PubMed2003

Continuum of intellectual disability: demographic evidence for the "forgotten generation".

Demographic features of Americans with mild intellectual disabilities were estimated in an analysis of the National Health Interview Survey. The cohort was compared to the population of the United States, persons with specific learning disabilities, and persons with mental retardation. Comparison on basic indices of adaptive functioning and SES suggest a large cohort of Americans who share many support needs and social and economic vulnerabilities with those labeled "mentally retarded." The combined prevalence of intellectual disability/mental retardation was estimated to be 1.27%. Implications are discussed in terms of the "forgotten generation" report of the 1999 President's Committee on Mental Retardation and evolving conceptions of mental retardation.

Adult↗

PubMed2002

Promoting the social acceptance of young children with moderate-severe intellectual disabilities using cooperative-learning techniques.

The effects of a cooperative-learning program on the social acceptance of children with moderate to severe intellectual disabilities by young children without disabilities were examined. Children without disabilities were assigned to a cooperative-learning program or a social-contact program involved with the special class children or to a control (no classroom contact) condition. Significant pretest-posttest changes over a 10-week period in the cooperative-learning context indicated that children without disabilities gave the special class children higher peer acceptance ratings, greater popularity indices, and lower social-distance ratings. There were also more frequent interactions with the children without disabilities. These changes did not occur in either the social-contact or the control groups.

Child↗

PubMed2026

Identification of biallelic loss-of-function PREP variants in three individuals with syndromic intellectual disability.

BACKGROUND: Neurodevelopmental disorders are one of the most prevalent reasons for genetic testing in childhood. Despite the identification of over 1950 associated genes, many proposed candidate genes lack convincing gene-disease validity. The gene PREP encodes the broadly expressed prolyl endopeptidase whose exact function remains largely unknown. A homozygous PREP variant has been reported once as a candidate gene in two siblings with intellectual disability but no functional studies were conducted. METHODS: Exome and trio genome sequencing were performed in two unrelated families as part of larger cohorts. Segregation analysis, RNA sequencing and immunoblots were performed to further examine the pathogenicity of detected PREP variants. RESULTS: We report three individuals from two unrelated families who presented with intellectual disability, behavioural abnormalities, strabismus, generalised muscular hypotonia, dysmorphic facial features and epilepsy. Exome and genome sequencing identified two different homozygous rare PREP variants: c.1570_1573dup, p.(Asn525Thrfs*5) and c.1839-2A>G, p.?. RNA sequencing confirmed the detected intronic variant to result in two aberrant mRNA isoforms. In patient-derived cells immunoblots showed absence of PREP protein. CONCLUSION: Our data suggest PREP deficiency as the underlying cause of a syndromic neurodevelopmental disorder.

Female↗

PubMedDate not supplied

[Case of subtelomeric aberration as a cause of familial intellectual disability with congenital defects and dysmorphic features--problems of diagnosis and genetic counseling].

Intellectual disability, defined as an IQ less than 70, occurs in 2-3% of the population and is both a medical and social problem of outstanding importance. Establishing its aetiology is not always easy, but it is a necessary condition in providing genetic counseling for families. Until now, the aetiology of mental retardation remains unknown in about half of the cases. Chromosomal aberrations are found in about 30-40% of moderately and profoundly intellectually impaired. Submicroscopic chromosomal aberrations involving the telomeric regions of chromosomes discovered in the recent years, are responsible for 4-9% cases of idiopathic mental retardation. Identification of very small structural rearrangements in the telomeric regions of the chromosomes requires another strategy than those applied in routine classic methods of chromosomal analysis (fluorescence in situ hybridisation in situ FISH). We present several cases of mental retardation with congenital defects and dysmorphic features which occurred in one family. Submicroscopic aberration in the telomeric regions of chromosomes 7 and 10 was revealed as a cause of mental retardation in this family. That aberration was a result of familial reciprocal translocation which had been not previously identified by routine cytogenetic methods. Detailed retrospective clinical characteristics of the proband and his affected relatives is presented. Variable clinical expression in presented cases in relation to difficulties in diagnosis and genetic counseling is discussed.

Chromosome Aberrations↗

PubMed1998

Topiramate: uses in people with an intellectual disability who have epilepsy.

The novel anticonvulsant topiramate has been shown to have efficacy across a range of seizure types including both generalized and partial seizures in several well-designed randomized controlled trials. It has also been shown to be effective in atonic seizures associated with Lennox-Gastaut syndrome. Tolerability data show a tendency to neuropsychiatric side-effects, such as confusion and word finding difficulties, when topiramate is used in polytherapy; these side-effects are reduced in monotherapy usage. The efficacy and spectrum of seizures treated by topiramate suggests that it has an important role in managing epilepsy in people with intellectual disability. The predictable side-effects can be monitored in clinical practice and possibly reduced by slow dose increments. The data set of patients with intellectual disability is still too small to rule out idiosyncratic drug reaction.

Anticonvulsants↗

PubMed1994

The fragile-X syndrome: a growing gene causing familial intellectual disability.

The fragile-X syndrome is the most common cause of familial intellectual disability. Recently, the gene related to the fragile-X syndrome [the 'fragile-X mental retardation'-1 (FMR-1) gene] has been isolated. In this review, clinical and molecular aspects of the fragile-X syndrome, current benefits and future prospects are discussed.

Female↗

PubMed2006

Predictors of asphyxiation risk in adults with intellectual disabilities and dysphagia.

BACKGROUND: Adults with learning disabilities referred for assessment of their eating and drinking are frequently reported to cough and choke when eating and drinking. The research literature investigating dysphagia has often overlooked asphyxiation risk, highlighting coughing and choking as indicators of aspiration only. This is a notable oversight due to the prevalence of asphyxia as a cause of mortality in this population. AIM: This study aims to identify the physiological and environmental factors that predict asphyxiation risk in adults with intellectual disabilities and dysphagia. METHOD: Data were collected from dysphagia-trained speech and language therapists (SLTs) working with the participant adults with intellectual disabilities and dysphagia. The SLTs used case notes, clinical assessment and videofluoroscopic assessment reports to gather the data. RESULTS: Speed of eating, cramming food and premature loss of the bolus into the pharynx were identified as significant predictors of asphyxiation risk in this population. CONCLUSIONS: The findings highlight the importance of maladaptive eating strategies in exacerbating the risk of asphyxiation and choking. These factors should be considered in the assessment of asphyxiation and choking risk and management. Finally, the need for joint assessment and management with other members of the multidisciplinary team is advocated.

Adolescent↗

PubMed1998

Selective serotonin re-uptake inhibitors for the treatment of perseverative and maladaptive behaviours of people with intellectual disability.

A retrospective case-note analysis was undertaken of 37 adults with intellectual disability who lived in Leicestershire, England. The subjects were prescribed one of two selective serotonin re-uptake inhibitor (SSRI) antidepressants, i.e. fluoxetine or paroxetine, for perseverative and maladaptive behaviours. The SSRIs proved to be of no benefit for 15 subjects (40%) and led to a deterioration in a further nine cases (25%). However, some reduction of perseverative and maladaptive behaviours was achieved in 13 cases (35%). There was no difference in the responses to fluoxetine or paroxetine.

Adult↗

PubMed2001

Complexity of staff communication and reported level of understanding skills in adults with intellectual disability.

Staff reports of the communication acts taking place with 22 adults with intellectual disability were compared with video observations of the communication acts used by staff with 12 of these service users. The interactions were coded in terms of the form of communication used, the function of the act and the level of complexity. The results show that staff tend to underestimate their own use of verbal communication and overestimate their use of non-verbal communication. The findings also indicate a mismatch between the reported level of understanding of the service user and the level of complexity of the language used. Staff appeared unable to adapt their communication to the skills of the service user and an average of 45% of communicative acts were outside the reported understanding skills of the individual. The implications of these findings are discussed and possible explanations for staff behaviour are suggested.

Adult↗

PubMed2004

Attitude to medication of parents/primary carers of people with intellectual disability.

OBJECTIVE: To investigate the influence of attitudes of carers of people with intellectual disability (ID) towards giving medication. METHOD: Ninety-three carers of service users who are currently attending outpatients clinic (Harrow Learning Disability service) were interviewed, using the RAMS (Rating of Attitude to Medication Scale) interview schedule. RESULTS: A significant association was found between relationship of the carer to the service user and overall positive or negative attitude towards medication, with a disproportionate number of parents expressing a negative attitude in comparison with professional carers (46% vs. 11%). CONCLUSION: This study suggests more work needs to be done with family carers than with professional carers to improve compliance with medication. Stigma is still associated with ID and psychiatric disorders. The family carers responses may be projecting their feelings related to the impact of having a child not only with ID, but also with additional psychiatric problems. The implication of the study for psychiatrists is the identification of a number of areas that could be usefully explored before writing a prescription.

Adolescent↗

PubMed2001

Correlations between clinical and historical variables, and cerebral structural variables in people with mild intellectual disability and schizophrenia.

The increased prevalence of schizophrenia in the population with mildly intellectual disability (ID) remains unexplained. The present study explores several possibilities by examining historical/clinical findings in relation to structural neuroimaging findings in three groups: (1) comorbid mild ID and schizophrenia; (2) schizophrenia alone; and (3) mild ID alone. Information about clinical and historical variables was obtained from 101 subjects (39 with comorbidity, 34 with schizophrenia and 28 with mild ID), out of whom 68 (23, 25 and 20, respectively) had had a cerebral magnetic resonance imaging (MRI) scan. Although a number of significant correlations exist between clinical variables and structural MRI abnormalities in all three groups, no clearly predictive inter- or between-group differences emerged. More striking was the finding that showed small amygdalo-hippocampal size to be associated with a history of central nervous system injury, especially meningitis. These findings provide support for the view that cognitive impairment and comorbid psychosis can result from a common cause, such as meningitis or obstetric complications, possibly interacting with other factors, such as family history.

Adolescent↗

PubMed2006

A review of the reliability and validity of Likert-type scales for people with intellectual disability.

BACKGROUND: Likert-type scales are increasingly being used among people with intellectual disability (ID). These scales offer an efficient method for capturing a wide range of variance in self-reported attitudes and behaviours. This review is an attempt to evaluate the reliability and validity of Likert-type scales in people with ID. METHODS: Fifty-one studies reporting response rates, response bias, reliability and validity of Likert-type scales among adolescents and adults with ID were reviewed. RESULTS: Low response rates were found among adolescents and adults with moderate to profound ID, when pictorial representations of response alternatives were not employed, and for Likert-type scales with self-descriptive statements. Response bias was evident, particularly among adolescents and adults with moderate to profound ID. Likert-type scales have better reliability and validity among adolescents and adults with borderline IQ or mild ID. Pretests and clarifying questions increase reliability and validity. CONCLUSIONS: Likert-type scales should include pictorial representations of response alternatives, a single set of one or two word response descriptors, clarifying questions, and pretests, and are best used with adolescents and adults with borderline IQ to mild ID.

Adolescent↗

PubMed2005

[An estimation chart for the possibility of aspiration in patients with severe motor and intellectual disabilities: its reliability and accuracy].

Although the most common cause of death in patients with severe motor and intellectual disabilities (SMID) is aspiration pneumonia, there are no criteria to detect aspiration. We have been making an evaluation tool to detect aspiration in patients with SMID easily, in cooperation with the project of comprehensive study of disability, social health, and welfare, supported by the Ministry of Health, Labor and Welfare, Japan. Here we studied the reliability and accuracy of the 2001 edition of the "questionnaires for functions of eating and swallowing" and "estimation chart for the possibility of aspiration" in 20 patients with risk of aspiration (13 with cerebral palsy, six with acquired cerebral palsy and one with muscle disease). Family members or nursing staffs taking care of them answered the questionnaires. A pediatrician and an occupational therapist or speech therapist checked the chart. Reliability was checked by the agreement between the estimation of the two professionals, and accuracy was determined by comparing the results of the chart and videofluolography. The results showed good reliability (kappa 0.63) and accuracy (kappa 0.47). Based on these results and additional analysis of the check items, the new edition of the chart was established.

Cerebral Palsy↗

PubMed2003

Identifying bipolar disorders in individuals with intellectual disability.

OBJECTIVE: The aim of the present study was to characterize adults with intellectual disability (ID) and concomitant clinical diagnoses of bipolar disorder (BPD), and determine whether DSM-IV criteria would distinguish individuals with BPD from patients with other psychiatric diagnoses. METHODS: A retrospective chart review was done of a convenience sample of adult patients seen over a 3-year period in a specialty clinic for adults with ID and psychiatric disorders. The DSM-IV criteria were used to differentiate individuals with clinical symptoms of BPD from groups of patients with other mood or thought disorders with behavioural symptoms which frequently overlap those of BPD. Behavioural symptoms were also catalogued and used to distinguish the diagnostic groups. RESULTS: Subjects with clinical symptoms of BPD had significantly more DSM-IV mood-related and non-mood-related symptoms, as well as functional impairments, compared to individuals with major depression, depression with psychosis or schizophrenia/psychosis NOS (not otherwise specified). Likewise, behavioural profiles of the BPD group of patients differed significantly from patients in the other three groups. CONCLUSIONS: Bipolar disorder can be readily recognized and distinguished from other behavioural and psychiatric diagnoses in individuals with ID, and DSM-IV criteria can be useful in the diagnosis of BPD.

Adult↗