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PubMed1999

Psychiatric symptoms in children with intellectual disability.

In a sample of almost 6000 8-year-old children, we found that 1.5% attended special schools for the educationally subnormal, or training schools. Psychiatric symptoms were studied by means of three screening instruments: the Rutter Parent Questionnaire (RA2) for the parents, the Rutter Teacher Questionnaire (RB2) for the teachers, and the Children's Depression Inventory (CDI) for the children. The prevalence rate of children identified as possibly suffering from a psychiatric disturbance was 32.2% according to the RA2. The corresponding prevalence rate for the RB2 was 34.2%. According to the CDI 11.0% had depressive disturbance. All types of disturbances were more frequent among the intellectually disabled children as compared to the nondisabled children. The differences were statistically significant for emotional and mixed types of disturbance on the RA2, and for emotional and conduct types of disturbance on the RB2.

Child↗
PubMed2006

Early detection of depression and associated risk factors in adults with mild/moderate intellectual disability.

The aim of this study was to determine the presentation and risk factors for depression in adults with mild/moderate intellectual disability (ID). A sample of 151 adults (83 males and 68 females) participated in a semi-structured interview. According to results on the Beck Depression Inventory II, 39.1% of participants evinced symptoms of depression (2 severe, 14 moderate, and 43 mild). Sadness, self-criticism, loss of energy, crying, and tiredness appeared to be the most frequent indicators of depression or risk for depression. A significant difference was found between individuals with and without symptoms of depression on levels of automatic negative thoughts, downward social comparison and self-esteem. Automatic negative thoughts, quality and frequency of social support, self-esteem, and disruptive life events significantly predicted depression scores in people with mild/moderate ID, accounting for 58.1% of the variance.

Adult↗
PubMed2002

Autonomy and intellectual disability: the case of prevention of obesity in Prader-Willi syndrome.

BACKGROUND: The policy concerning care for people with intellectual disability (ID) has developed from segregation via normalization towards integration and autonomy. Today, people with ID are seen as citizens who need to be supported to achieve a normal role in society. The aim of care is to optimize quality of life and promote self-determination. The promotion of autonomy for people with ID is not easy and gives rise to ethical dilemmas. Caregivers are regularly confronted with situations in which there is a conflict between providing good care and respecting the client's autonomy. This becomes evident in the case of prevention of obesity in people with Prader-Willi syndrome (PWS). METHOD: As part of a study about the ethical aspects of the prevention of obesity, in-depth qualitative interviews were conducted with the parents and professional caregivers of people with PWS. RESULTS: In analysing interviews with parents and formal caregivers, the present authors found that the dichotomy between respecting autonomy and securing freedom of choice on the one hand, and paternalism on the other, is too crude to do justice to the process of care. The stories indicated that caregivers see other options and act in other ways than to intervene without taking into account the wishes of the individual with PWS. The present authors elaborated these options, taking models of the physician-patient relationship as a heuristic starting point. They extended the logic of these models by focusing on the character of the process of interaction between caregiver and care receiver, and on the emotional aspects of the interactions. CONCLUSION: This approach results in more attention to processes of interpretation, deliberation and joint learning.

Adolescent↗
PubMed2004

Sleep problems in children with an intellectual disability: parental perceptions of sleep problems, and views of treatment effectiveness.

BACKGROUND: Sleep problems are common in children with an intellectual disability (ID), often lasting for many years. Many parents do not perceive their child to have a sleep problem, do not believe treatment is possible and do not seek treatment. This paper examined prevalence and duration of sleep problems in children with an ID and considered parental perceptions of sleep problems and views towards treatment. METHOD: The paper reports on two studies (n = 149 and 243 respectively) of children between 3 and 18 years, with a range of disabilities. Parents in each study completed a questionnaire about their child's sleep problems, and the type and effectiveness of any treatment used to address their child's sleep problems. RESULTS: Prevalence rates ranged between 25.5% and 36.2% for sleep problems with an average duration of between 6 and 9 years. Around half of parents had sought treatment for their child's sleep problem in Study 1, while 76% had done so in Study 2. Parental ratings regarding treatment effectiveness were higher in Study 1 than in Study 2. Contrary to expectations, behavioural treatment was not rated as significantly more effective than other treatments in either study. CONCLUSIONS: While sleep problems are common and chronic in children with an ID, parents may not recognize a sleep problem as present, often do not seek treatment for their child's sleep problems, and treatment advice and effectiveness is very variable. Thus, further research and parent and professional education regarding the identification and treatment of sleep problems in these children is required.

Adolescent↗
PubMed2006

Trisomy 8q and partial trisomy 22 in a 43-year-old man with moderate intellectual disability, epilepsy and large cell non-Hodgkin lymphoma.

Partial trisomies are chromosome abnormalities resulting in a broad range of malformations depending on the size and location of the chromosomal rearrangement. Whereas diagnosis of these syndromes is usually made in early childhood, few descriptions exist about the clinical picture in adulthood. We report on a patient diagnosed at the age of 43 years with a 47,XY,+der(22)t(8;22)(q24.13;q11.21) karyotype and predominant clinical features of trisomy 8q. To our knowledge, this is the oldest patient described with a partial trisomy 8. The patient presented with moderate intellectual disability, a past history of epilepsy and facial anomalies. In addition, a large cell non-Hodgkin lymphoma was diagnosed in adulthood. Detailed breakpoint mapping by single nucleotide polymorphism (SNP) arrays showed that the derivative chromosome contains a full-length copy of the C-MYC oncogene. Given that trisomy 8q is the most frequent secondary chromosomal abnormality in hematological diseases, the possibility of a genetic predisposition for these disorders in patients with 8q duplication is raised.

Adult↗
PubMed2003

An audit of investigations into allegations of abuse involving adults with intellectual disability.

BACKGROUND: The present paper describes the results of an audit of referrals to a psychology service requesting specialist assistance in the investigation of allegations of abuse. METHODS: The referrals were over a 2-year period and case notes and records were reviewed to analyse the nature of the allegation, the characteristics of the victims or perpetrators, and the process of the investigation and its outcome. RESULTS: Twenty-six people were referred for investigation into allegations of sexual or physical abuse. The referrals were for assistance with an investigative interview (n = 12), capacity to give consent to a sexual relationship (n = 8) and competence to give evidence in court (n = 6). The referrals were all in relation to adults, covering a range of ages and degrees of intellectual disability. CONCLUSIONS: The process of the investigations suggested that a number of barriers still exist which can make decision-making in relation to the alleged abuse extremely difficult. Resolution of the allegations through the criminal justice system was also problematic.

Adult↗
PubMed2005

Staff judgements of responsibility for the challenging behaviour of adults with intellectual disabilities.

BACKGROUND: This study examines the importance of staff judgements of responsibility for challenging behaviour in predicting their emotional and intended helping responses. METHODS: Sixty-two carers completed questionnaires rating attributions of internality, stability and controllability, emotions of sympathy and anger, judgements of responsibility for the development of challenging behaviour and for its resolution and intended effort in helping in response to a scenario describing an aggressive behaviour. RESULTS: Results showed significant correlations between judgements of responsibility and attributions, emotions and intended effort in helping. Regression analysis showed that the best predictor of intended helping is the emotion of sympathy and that sympathy is best predicted by the attribution of internality, the judgement that people are not responsible for the development of challenging behaviour and the judgement that they are responsible for the resolution of the behaviour. CONCLUSIONS: Judgements of responsibility predict emotional and intended behavioural responses of carers of people with intellectual disabilities and challenging behaviour. The results are discussed in relation to previous work on carer attributions in response to challenging behaviour. Implications for clinical work with carers are considered.

Adult↗
PubMed1998

Tiagabine: a new therapeutic option for people with intellectual disability and partial epilepsy.

Tiagabine exerts its antiepileptic drug (AED) activity by selectively inhibiting the uptake of gamma-aminobutyric acid (GABA) onto the transporter molecules, and thus, increasing extracellular concentrations of GABA in the brain. The absorption and elimination of tiagabine follow linear pharmacokinetics. Tiagabine is metabolized by hepatic cytochrome P450 enzymes and enzyme-inducing AEDs increase tiagabine clearance by 50-65%. Tiagabine has shown no clinically important interactions with other drugs, including oral contraceptives. In the perforant pathway stimulation model of status epilepticus, tiagabine reduced the seizure number and severity, and also prevented the loss of pyramidal cells in the hippocampus as well as alleviated impairment of the spatial memory impairment associated with hippocampal damage. Tiagabine has both antiepileptogenic and anticonvulsant effects in the kindling model of epilepsy. Based on the data from the short- and long-term add-on studies, tiagabine is effective adjunctive therapy for all partial seizure types in adolescents and adults. Conversion to tiagabine monotherapy has been also possible in substantial amount of patients with partial seizures in three trials. Tiagabine is generally well-tolerated. The most common adverse events in controlled studies involve the central nervous system; for example, dizziness, asthenia, nervousness, tremor, depressed mood and emotional lability. Special safety analyses with formal neuropsychological testing suggest that tiagabine does not adversely affect cognition or mood. Tiagabine represents an important new therapeutic option for patients with treatment-refractory partial seizures. The role of tiagabine in the management of partial epilepsy of patients with intellectual disability is especially emphasized since tiagabine has a low side-effect profile in the cognitive area.

Adult↗
PubMed2005

Self-injurious behaviour in individuals with intellectual disabilities.

PURPOSE OF REVIEW: In this paper we review literature published in 2004 on self-injurious behaviour in individuals with intellectual disabilities. Reviewed studies examine phenomenology and comorbidity, pharmacological and other interventions, genetic syndromes, and behavioural assessment and treatment. RECENT FINDINGS: Key findings include the possible association between self-injury and impulse control and stereotyped behaviours. Reports on the use of pharmacological interventions provide little evidence for the use such interventions, although the findings of studies on naltrexone seem stronger. In the behavioural phenotype literature the predictors of self-injury in Prader-Willi syndrome are becoming more refined. The behaviour analysis literature reports further development of assessment methodology to cater for idiosyncratic functions and low-rate behaviours. SUMMARY: Developments in the fields of applied behaviour analysis and genetic syndromes highlight the importance of tailored assessments and interventions. Evidence from the pharmacological literature suggests that although significant numbers of individuals are prescribed such interventions, the research evidence for their efficacy is, at best, weak.

Journal Article↗
PubMed2005

Historical reflection on advocacy in the psychology of intellectual disability.

Advocacy by psychologists has often been portrayed as requiring immersion in the processes of public policy. In the area of intellectual disability, many relevant laws have been passed, court cases fought, and administrative decisions made. These policy decisions have, however, sometimes been based on a division of labor, with psychologists doing the research and lawyers and representatives of parents' groups carrying out most of the advocacy. It now appears that some of the earlier advocacy by psychologists in this area had unfortunate results. This is partly because some of it was based on flawed research and partly because our values have changed over time. Some more recent instances of advocacy, better grounded scientifically, had more favorable effects. Nevertheless, there is clearly not a simple linear relation between research findings and policy. Ample illustrations of these statements are provided in the careers of four psychologists who were influential as advocates in this domain during their lifetimes: Henry Goddard, Cyril Burt, Jack Tizard, and Donald M. Baer.

Child↗
PubMed2005

Factors associated with the efficacy of a group intervention for anger in people with intellectual disabilities.

OBJECTIVES: There is a growing literature that suggests cognitive behavioural interventions aimed at reducing inappropriately expressed anger by people with intellectual disabilities are effective. However, interventions provide little information about which aspects of the individual or their treatment may be contributing to the overall efficacy of the approach. DESIGN: A group intervention is compared with a waiting list control. A cross-sectional regressional method was used to explore the relationship between change in a provocation inventory score over the course of an intervention and a number of other variables. METHODS: Data was collected from 50 participants who attended a series of groups with the aim of reducing aggressive behaviour. This was compared with a waiting list control of 36. Outcome was measured by a provocation inventory, which was administered pre-, post-group, and at follow-up. Other variables were also measured including, receptive vocabulary, age, gender, experience of primary therapist and whether staff accompanied participants to the group or not. RESULTS: A 2 x 2 split plot ANOVA identified a statistically significant treatment effect. However, analysis examining clinical significance was more equivocal with only 11 of the individuals in the intervention group showing reliable change as defined by Jacobson and Truax (1991). Regression analysis indicated that 17.5% of the variance in change of provocation inventory scores could be accounted for by the independent variables. Immediately on completion of the group, being accompanied by a member of staff and increased receptive language scores contributed significantly to the variance. CONCLUSIONS: A reduction in provocation inventory scores immediately after the group was more likely to occur if the participant was accompanied by a member of staff who knew them and if they had a higher score on the test of receptive vocabulary. This pattern changed with time. The implications of the results will be discussed and the relatively large amount of variance that is not accounted for will also be considered.

Adolescent↗
PubMed2004

Defining the needs of patients with intellectual disabilities in the high security psychiatric hospitals in England.

BACKGROUND: Previous studies have suggested that a substantial proportion of the patients with intellectual disabilities (ID) in the high security psychiatric hospitals (HSPHs) should be transferred to more appropriate services to cater for their specific needs in the longer term. METHOD: The individual and placement needs of high secure psychiatric patients detained under the legal category of mental impairment or severe mental impairment were assessed in a cross-sectional survey. RESULTS: Patients had a large number of needs (on average 10.8), about a third of which were rated as unmet and therefore represented significant continuing problems. Approximately one-third of the sample could be moved out of HSPHs if appropriate alternatives were available. Factors associated with the continued need for high security included higher treatment and security needs, younger age, recent violent conduct and their index offence profile. CONCLUSIONS: High security services are still required for a number of patients with ID. New and existing services need to be configured to meet specific profiles of need and provide long-term rehabilitation and specialist care. DECLARATION OF INTEREST: This was part of a larger project funded by grants from the High Security Psychiatric Services Commissioning Board and Department of Health.

Adult↗
PubMed1998

Phenytoin: effective but insidious therapy for epilepsy in people with intellectual disability.

Phenytoin (5,5-diphenylhydantoin), which has been in use for 60 years, is still an important antiepileptic drug. Its primary mechanism of action is modulation of the sustained repetitive firing of neurones by direct inhibition and blockage of voltage-gated sodium channels in the neuronal cell membrane, and by delay of cellular reactivation. The plasma protein binding of phenytoin is normally between 90% and 95%. The drug is rapidly distributed from the blood to the tissues and is almost completely metabolized in the liver. The plasma phenytoin concentration normally reaches the steady-state level within 1-2 weeks. The half-life of phenytoin is less than 20 h in low doses, but is prolonged in high doses, newborn infants and elderly people. The half-life is shortened when phenytoin is given concomitantly with an enzyme-inducing drug, such as phenobarbital or carbamazepine. Phenytoin is effective for treating generalized tonic-clonic seizures, partial seizures with or without generalization, and convulsive status epilepticus. Over the years, many new, and even serious, adverse effects of phenytoin have been recognized. Phenytoin encephalopathy, manifesting as cognitive impairment and a cerebellar syndrome, is an important adverse neurological effect, the development of which depends on the saturation kinetics of phenytoin, individual differences in phenytoin metabolism, an inhibitory effect of certain drugs on phenytoin metabolism, or the ability of certain drugs to displace phenytoin from plasma proteins, leading to an increase in the plasma level of unbound phenytoin. Because of its potentially adverse effects, phenytoin is not recommended as the first choice for treating epileptic seizures, except as a co-drug for managing convulsive status epilepticus. In patients with epilepsy who also have intellectual disability, and are susceptible to balance disturbances and cognitive dysfunction, it is wise to replace phenytoin with another drug, such as carbamazepine or oxcarbazepine. The long-term use of phenytoin is not recommended for patients with loss of locomotion, marked cognitive impairment, or symptoms and signs of cerebellar disease. The prevention of phenytoin intoxication, with the subsequent development of phenytoin-induced encephalopathy, depends on careful observation of the patients and frequent monitoring of plasma levels of phenytoin and other concomitantly administered antiepileptic drugs.

Anticonvulsants↗
PubMed2006

Psychopathology in adults with autism and intellectual disability.

There have been few studies of psychopathology in adult with autism. This study examined psychiatric co-morbidity in 147 adults with intellectual disability (ID) and autism and 605 adults with ID but without autism. After controlling for the effects of gender, age, psychotropic medication and level of ID, people with autism and ID were no more likely to receive a psychiatric diagnosis than people with ID only. People with autism were less likely to receive a diagnosis of personality disorder. These findings cast doubts on the hypothesis that adults with ID and autism are more vulnerable to certain psychiatric disorders than non-autistic adults with ID.

Adolescent↗
PubMed2003

Elderly persons with intellectual disability: a study of clinical characteristics, functional status, and sensory capacity.

Longer life expectancy is resulting in increasing numbers of elderly adults with intellectual disability (ID). There has been the question whether persons with ID demonstrate early signs of aging before the general population. The aim of this study was to determine if persons with ID (with and without Down syndrome) showed premature aging changes compared with a control group. Elderly persons (n = 24, average age of 61) from one residential care center in Israel and younger adults from another center (n = 37, average age of 45) were compared with elderly residents without ID in an independent living facility. The study considered demographic data, medical data, anthropometric measurements, body fat and body mass index, flexibility, and sensorimotor function tests. The results showed that the persons with ID had basically similar body composition to that of persons without ID, however, the functional performance of elderly adults with ID was more impaired. We postulate that the slower functioning responses may be explained by a less physically active lifestyle, that may accelerate the onset of disease and result in symptoms associated with aging that are detrimental to health. It is therefore important that persons with ID participate in physical activity and exercises in order to promote health and prevent disease.

Adult↗
PubMed2004

Women with intellectual disability who have offended: characteristics and outcome.

BACKGROUND: There have been a few reports describing the characteristics and outcomes of male offenders with intellectual disability (ID). Therefore, while we are building up a reasonable picture of this client group, there are almost no reports of female offenders with ID. This paper is a preliminary attempt to present information on a small cohort of female offenders. METHODS: Characteristics of female offenders are presented including information on age, IQ, mental illness, referring agents, crimes committed, problems identified, sexual and physical abuse and outcome. Some comparisons are made with corresponding descriptions of male cohorts in Lindsay et al. (2004). RESULTS: The main result is that females constitute 9% of referrals to the service. Other notable results are that: at 61% sexual abuse in the cohort of female offenders is higher than in male cohorts but at 38.5% physical abuse is no higher than in appropriate comparison groups; as with mainstream female offenders identification of mental illness is high at 67%; and total re-offending over 5 years was 22% but, excluding prostitution, was only 16.5%. CONCLUSIONS: In some respects, this cohort of female offenders shows similar characteristics to their male counterparts. However, there are higher levels of mental illness, higher levels of sexual abuse and lower levels of re-offending. It is hypothesized that as females constitute such a low percentage of referrals, it suggests that women with ID do not show the same levels of sexually abusive behaviour or aggressive behaviour--the two most frequent reasons for male referral. Therefore, an intervening variable such as mental illness may indeed be a significant factor. Lower re-offending rates may indicate the success of interventions directed at psychological problems and mental illness.

Adult↗
PubMed2003

Perspectives on epilepsy in people with intellectual disabilities: comparison of family carer, staff carer and clinician score profiles on the Glasgow Epilepsy Outcome Scale (GEOS).

PURPOSE: Clinical practice with people with intellectual disability relies heavily upon caregiver report. Crucially, the carer's perspective may depend upon his or her relationship to the patient. We investigated similarities and differences within and between family and paid carers in their reports on the Glasgow Epilepsy Outcome Scale (GEOS), an instrument that quantifies concerns about epilepsy in this population [Epilepsia 42 (2001) 1043]. METHODS: GEOS forms were available on 186 patients (108 males; mean age 39 years) across 384 primary respondents (141 staff, 83 family, 160 clinicians) and independently completed secondary respondents (67 staff, 36 family). Data were analysed to consider levels of concern as rated bv staff carers, family members and clinicians, and also to consider inter-rater agreement on the concerns raised. RESULTS: There were significant differences in the magnitude of concern on each sub-scale [concerns about seizures, treatment, caring and social impact; range of F(2,171)=9.5-64.7; all P<0.0001]. Post hoc testing revealed that family members scored all sub-scales more highly than staff carers or clinicians, and that staff carers scored more highly than clinicians on all but one sub-scale. Inter-rater agreement between family members was considerably higher (range of r=0.69-0.91) than between staff carers (r=0.30-0.47) across the GEOS sub-scales. Association between staff and family ratings was also modest (r< or = 0.39). CONCLUSIONS: It is preferable for the same staff member to complete each administration of the GEOS because of inter-staff variability in reporting of concerns. Families provide a consistent, but more extreme, picture and clinicians generally underestimate the concerns of direct caregivers. However, content of concerns varies relatively little across respondents.

Adult↗