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PubMed2005

Classical and modern prejudice: attitudes toward people with intellectual disabilities.

In two studies, Study 1 and Study 2, we examine whether attitudes toward people with intellectual disabilities, like sexism and racism, consist of two forms-a classical and a modern, where the classical is overt and blatant and the modern is more subtle and covert. Self-report scales tapping these two forms were developed in Study 1. Based on confirmatory factor analyses, the results in Study 1 supported our hypothesis and revealed that the modern and classical forms are correlated but distinguishable. This outcome was replicated in Study 2. Construct and discriminatory validations of the scales provided further support for the distinction. The theoretical and practical importance of the results is discussed in relation to previous research on attitudes toward people with intellectual disabilities and other social outgroups.

Adolescent↗

PubMed2006

The outcomes of an intervention study to reduce the barriers experienced by people with intellectual disabilities accessing primary health care services.

BACKGROUND: People with intellectual disabilities (IDs) experience significant health inequalities compared with the general population. The barriers people with IDs experience in accessing services contribute to these health inequalities. Professionals' significant unmet training needs are an important barrier to people with IDs accessing appropriate services to meet their health needs. METHOD: A three group, pre- and post-intervention design was used to test the hypothesis that a training intervention for primary health care professionals would increase the knowledge and self-efficacy of participants. The intervention had two components - a written training pack and a 3-hour face-to-face training event. One group received the training pack and attended the training event, a second group received the training pack only, and a third group did not participate in the training intervention. Research measures were taken prior to the intervention and 3 months after the intervention. Statistical comparisons were made between the three groups. RESULTS: The participants in the training intervention reported that it had a positive impact upon their knowledge, skills and clinical practice. As a result of the intervention, 35 (81.4%) respondents agreed that they were more able to meet the needs of their clients with IDs, and 33 (66.6%) reported that they had made changes to their clinical practice. The research demonstrated that the intervention produced a statistically significant increase in the knowledge of participants (F = 5.6, P = 0.005), compared with the group that did not participate in the intervention. The self-efficacy of the participants that received both components of the intervention was significantly greater than the group that did not participate in the training (t = 2.079, P = 0.04). Participation in the two components of the training intervention was associated with significantly greater change in knowledge and self-efficacy than those receiving the training pack alone. CONCLUSION: This intervention was effective in addressing the measured training needs of primary health care professionals. Future research should directly evaluate the positive benefits of interventions on the lives of people with IDs.

Attitude of Health Personnel↗

PubMed2000

Physical fitness of adults with an intellectual disability: a 13-year follow-up study.

The purpose of this study was to describe the change in physical fitness of middle-aged adults with an intellectual disability over a period of 13 years. Participants were 32 adults who worked in a supported work environment in Montreal and had been participants in a physical fitness study in 1983. Using the Canadian Standardized Test of Fitness, the participants were evaluated for cardiovascular endurance, muscular strength, muscular endurance, flexibility, and body composition. A home visit prior to the testing session refamiliarized the participants with the test procedures. Two forms of analysis were used to describe the change in fitness over 13 years. First, a 2 x 2 (Group x Time) analysis of variance for each dependent variable assessed change over time. Second, effect sizes were calculated to measure the magnitude of change in fitness over the 13-year period in comparison to those without an intellectual disability. As expected, the physical fitness levels of the participants were low when compared to those without a disability and declined over the 13 years. In addition, the magnitude of change over the 13 years, as compared to those without a disability, was greater for male and female participants for body mass index and percentage of body fat and for female participants for cardiovascular endurance and sit-ups. It appears that adults with an intellectual disability may be particularly at risk for declining health associated with aging and low physical fitness.

Adipose Tissue↗

PubMed1998

Oxcarbazepine in the treatment of epilepsy in children and adolescents with intellectual disability.

Oxcarbazepine is similar to carbamazepine in its mechanisms of action and antiepileptic efficacy, but has better tolerability and fewer interactions with other drugs. Very few data are available on the usefulness of oxcarbazepine in patients with intellectual disability and epilepsy. From January 1991 until October 1994, the present authors treated 40 patients with intellectual disability and epilepsy under the age of 18 years with oxcarbazepine. The mean age at onset of epilepsy was 12 months (range = 0-132 months). All patients had previously been intractable to antiepileptic drugs (including carbamazepine in 29 patients). The age at onset of oxcarbazepine therapy ranged from 0.8 to 17.1 years (mean = 6.2 years). Thirty-one patients (78%) received other antiepileptic drugs simultaneously with oxcarbazepine. The mean follow-up with oxcarbazepine treatment was 18.8 months. The mean maximum oxcarbazepine dose was 49 mg kg(-1) day(-1) (range = 21-86 mg kg(-1) day(-1). A reduction in seizures of at least 50% during oxcarbazepine treatment was observed in 14 out of 28 (50%) patients with localization-related epilepsy and in 5 out of 12 (42%) patients with generalized epilepsy. Efficacy was transient in three patients. An increase of atypical absences was observed in one child and an emergence of drop attacks in another. Side-effects were observed in 16 (40%) patients; in eight (20%), these lead to dose reduction or discontinuation. Oxcarbazepine appears to be an effective and well-tolerated drug for children and adolescents with intellectual disability and epilepsy.

Adolescent↗

PubMed1992

The right to procreate: intellectual disability and the law.

The common law recognizes the right of every woman to bear a child and will not contravene that right unless there are compelling reasons for doing so. The issue of the right of intellectually disabled girls, below the age of 18 years, to ultimately bear a child has now been removed to the courts. Following a recent High Court decision, surgery resulting in the sterilisation of intellectually disabled minors cannot be performed without the sanction of the Family Court. Intellectually disabled women differ in that they are legally adults once they reach the age of majority with presumed full adult rights to consent to medical treatment. Other legal mechanisms are require when they lack this capacity. This article discusses the High Court case and others that have been heard in Australia recently.

Adolescent↗

PubMed2002

Behavioural symptoms among people with severe and profound intellectual disabilities: a 26-year follow-up study.

BACKGROUND: Very little is known about the natural history of challenging behaviour and psychiatric disorder in people with severe and profound degrees of intellectual disability. AIMS: To clarify the natural history of challenging behaviour and psychiatric disorder in this population through a longterm prospective cohort study over a 26-year period. METHOD: One hundred individuals with severe or profound intellectual disability were randomly selected in 1975. Their behaviour was recorded through carer and psychiatrist ratings using the Modified Manifest Abnormality Scale of the Clinical Interview Schedule. The presence and severity of psychiatric disorder were also recorded. The study was repeated in 1981/82 and 1992/93. We repeated the study again in 2001, supplementing the original observational data with the Checklist of Challenging Behaviour. RESULTS: Behavioural symptomatology is remarkably persistent, particularly stereotypy, emotional abnormalities, eye avoidance and overactivity, although the severity of overall psychiatric disorder does show some abatement through time. CONCLUSIONS: These findings influence the prospects of success in relocating adults with severe and profound degrees of intellectual disability back into the community.

Adolescent↗

PubMed2004

Serotonergic antidepressant effects on aggressive, self-injurious and destructive/disruptive behaviours in intellectually disabled adults: a retrospective, open-label, naturalistic trial.

There is a growing body of evidence that serotonergic antidepressants are useful in the treatment of maladaptive behaviours in the intellectually disabled. However, not all studies have shown positive results due to lack of efficacy, tolerance development, and troublesome side-effects. The current study consisted of a review of the treatment response to a variety of serotonergic antidepressants, consisting of selective serotonin reuptake inhibitors (SSRIs ) (n = 36) and clomipramine (n = 2) in 38 institutionalized intellectually disabled adults (20 males, 18 females; mean age 45.6 yr, age range 18-74 yr). Those studied were treated for aggression, self-injurious behaviours, destructive/disruptive behaviours, depression/dysphoria, or a combination of these or other challenging behaviours. Most were receiving concurrent psychotropic and/or anticonvulsant medications. Effectiveness was determined by a retrospective review of the summaries of multidisciplinary Neuropsychiatric Behavioural Reviews (NBRs) in which global and specific maladaptive behaviours were rated on a 1- to 7-point scale, and by psychologists' ratings of target behaviours. Overall, statistically significant decreases in the ratings of global maladaptive behaviour and aggression, self-injurious behaviour, destruction/disruption and depression/dysphoria and in psychologists' ratings occurred in the subject group after the initiation of antidepressants. The results suggest that serotonergic antidepressants are useful in the treatment of challenging/maladaptive behaviours in the intellectually disabled.

Adolescent↗

PubMed1998

Psychological services utilization: relationship to severity of behaviour problems in intellectual disability services.

Using the Developmental Disabilities Profile, a population service registry, the present study gives an analysis of the relationship between the rated frequency of contact with psychology specialists and a composite rating of 13 behaviour problems in intellectual disability services. An analysis of information on 45,810 adults with intellectual disability indicated that, when the population was divided into quintile groups based on behaviour severity, distinctively different distributions of rated contacts with psychologists were discernible. The people rated in the highest quintile for severity of maladaptive behaviour constituted especially high utilizers of psychology services. About 37% of participants had had no contact with psychologists during the past year, whereas 26% had such contact weekly or more frequently. The findings are introduced and discussed in the context of psychological practice in intellectual disability services and trends toward managed health and behavioural health care in the USA.

Adolescent↗

PubMedDate not supplied

Perception of service needs by parents with intellectual disability, their significant others and their service workers.

It is well recognized in the literature that parents with intellectual disability require support and social services. There is growing interest in these services being responsive to parent-identified concerns, particularly as it has been suggested that parents' concerns may differ from those reported by service workers, family members, or friends. In the Australian study reported here, the views of parents with intellectual disability, their significant others and service workers were sought on parents' service needs on 20 items incorporating child care, social and community living, and domestic skills. There were significant differences in the perceptions of the parents, workers, and significant others on the help parents needed. Several gaps in services were also identified. From the parents' perspective, their greatest unmet needs were in the community participation area, specifically with help to explore work options, to know what community services are available and how to access these, and to meet people and make friends.

Analysis of Variance↗

PubMed2006

Standards and quality measures for services for people with intellectual disabilities.

PURPOSE OF REVIEW: In our modern, performance managed National Health Service, quality has become a key target. Quality assurance has become a statutory duty and the National Health Service is inundated with policy documents and performance measures in most areas of mainstream healthcare. Performance against such measures will be monitored by powerful independent regulatory bodies. It is therefore timely to look at what specific quality measures there are for services for people with intellectual disability. RECENT FINDINGS: Tension exists as to the need for developing specific targets for the population with intellectual disabilities when the philosophy of care is for real social inclusion where 'all means all'. To what extent will existing quality standards for mental health services suffice when we know that often people with intellectual disabilities have real issues accessing these services? This paper highlights published quality measures and standards from primary care through mainstream secondary care and specialist mental health services. It also discusses the policy context and current development of regulatory standards as these continue to evolve. SUMMARY: Evidence for meeting quality standards will increasingly dominate the delivery and funding of healthcare in the National Health Service.

Continuity of Patient Care↗

PubMed2003

Effects of topiramate on aggressive, self-injurious, and disruptive/destructive behaviors in the intellectually disabled: an open-label retrospective study.

This study reviews the treatment response to the antiepileptic drug topiramate (Topamax-mean dose 202 mg/d, range 150-350 mg/d) of a group of 22 institutionalized intellectually disabled adults (8 males, 14 females, mean age 46.5 years, age range 25-70 years). These individuals were predominantly classified as having severe or profound intellectual disability and as having a mood disorder. The individuals studied were treated for aggression, self-injurious behaviors, destructive/disruptive behaviors or a combination of these, and/or other challenging and maladaptive behaviors. All subjects were receiving concurrent psychotropic and/or anticonvulsant medications. Effectiveness was determined by retrospective review of summaries of quarterly multidisciplinary Neuropsychiatric Behavioral Reviews. Assignment of global severity scores and evaluation of longitudinal behavioral graphs of target symptoms occurred. Overall, statistically significant decreases in global severity scores and in the cumulative aggression and worst behavior rates occurred in the subjects, especially when the 3 months before and the 3 to 6 months after starting topiramate were compared. The overall subject group showed no significant weight changes. One subject developed delirium, 1 developed hypoglycemia, 1 developed sedation, and 2 developed constipation. The results suggest that topiramate may have a role in the treatment of challenging/maladaptive behaviors in intellectually disabled individuals.

Adult↗

PubMedDate not supplied

Staff stressors and staff outcomes in services for adults with intellectual disabilities: the Staff Stressor Questionnaire.

This paper reports on the development, psychometric properties, and validity of a self-report measure designed to assess potential stressors among staff in services for people with intellectual disabilities, the 33-item Staff Stressor Questionnaire (SSQ). A questionnaire including the SSQ and scales measuring staff outcomes was administered to 512 staff across seven services for people with intellectual disabilities. The SSQ was factor analyzed to produce seven subscales reflecting different potential stressors for staff: user challenging behavior; poor user skills; lack of staff support; lack of resources; low-status job; bureaucracy; and work-home conflict. The SSQ subscales showed adequate internal reliability in terms of Cronbach's alpha and mean inter-item correlations. Associations between SSQ subscale scores and different staff groups, and patterns of associations between SSQ subscales and a range of staff outcomes, provided evidence suggestive of the face-, construct-, and criterion-related validity of the questionnaire. The SSQ shows promise as a measure for assessing potential stressors for staff in services for people with intellectual disabilities. Further studies to examine the reliability, validity, and utility of the SSQ are recommended.

Adult↗

PubMed2003

Challenging behaviours should not be considered as depressive equivalents in individuals with intellectual disability.

BACKGROUND: Depression is one of the most common forms of psychopathology in people with intellectual disability (ID). The present study evaluated the utility of an expanded assessment of psychiatric symptoms and challenging behaviours, as measured by the Clinical Behavior Checklist for Persons with Intellectual Disabilities (CBCPID). METHODS: The CBCPID was administered to 92 people with ID, 35 of whom were diagnosed with a depressive disorder. RESULTS: Item and factor analysis of the scale indicated that depression was best assessed using the core DSM-IV symptoms of depressive disorder. Challenging behaviours such as self-injury or aggression were not closely associated with depression. Short scales using the core DSM-IV symptoms of depression were highly internally consistent. There was also evidence of the validity of these scales. CONCLUSIONS: This study found no evidence that challenging behaviours were depressive equivalents in this population. The present authors conclude that the assessment of depression in people with ID should focus on the core DSM-IV symptoms of depression.

Adult↗

PubMed2002

Burnout among people working with intellectually disabled persons: a theory update and an example.

The paper offers an overview of the burnout literature connected to work stress and is specially aimed at professionals with responsibilities for persons with intellectual disabilities. In the paper different important key concepts in the burnout literature are both discussed in general terms, and also connected to the different instruments used to assess burnout. The effect of stress and burnout intervention procedures is also discussed thoroughly. At the end of the paper there is an example of an intervention study among staff working with persons with intellectual disabilities. The paper concludes that future progress is to be dependent onempirical tests of theory-based models using research designs that permit causal inferences. In addition there is a growing need for longitudinal designs reporting effects of different intervention approaches, especially among the staff working with persons with intellectual disabilities.

Burnout, Professional↗

PubMed2002

The palliative care needs of people with intellectual disabilities: a case study.

This article describes a case study that aimed to consider the unique needs of a client who has intellectual disabilities and a terminal illness. Data collection included semi-structured interviews with the client and professionals involved in his care. Five broad sets of themes emerged from these interviews. Although these are not unique to the rapidly evolving field of palliative care, they are less familiar within the specialism of intellectual disabilities, i.e. difficulties and delays around diagnosing the illness, consent issues, conflicts between the carers and the family, truth-telling, and the need for professional support. Professionals who work with a person with intellectual disabilities and a terminal illness need to be aware that special issues may arise. The effects of potential problems with comprehension and communication need to be assessed individually. A close collaboration between all professionals, carers, family and the client, and the mutual sharing of expertise, is essential to ensure the best possible care.

Adult↗

PubMed2005

Families and intellectual disability.

PURPOSE OF REVIEW: This review includes recent research pertaining to family functioning when there is a child or adult offspring with intellectual disability. The purpose was to broaden the examination of families research from an adjustment/coping perspective to consideration of more contextual factors (environment, culture, service delivery). RECENT FINDINGS: Studies continue to focus on parental well being, with parents of children with intellectual disability still showing evidence of stress and depression. Increasing evidence is accruing, however, that child behavior problems or specific syndrome more directly relate to poorer parental well being. On the other hand, parenting behaviors also contribute to child behaviors, with studies highlighting the importance of parenting context and dynamics. Interventions focus on child behaviors as well as on stress reduction for parents. Finally, the continued involvement of parents across the lifespan of their young adult with intellectual disability is apparent from studies of quality of life and living arrangements. SUMMARY: The well being of family members continues to be an area of interest, with special emphasis on siblings and cultural context. Methodological rigor in families research also continues to increase, with diverse methodologies represented. There is still a need, however, for the development of theoretical models within which to frame future research on topics such as siblings, as well as both negative and positive impact on families.

Journal Article↗

PubMed2004

Review of donepezil, rivastigmine, galantamine and memantine for the treatment of dementia in Alzheimer's disease in adults with Down syndrome: implications for the intellectual disability population.

The management of dementia in Alzheimer's disease has dramatically changed since the development of anti-dementia drugs. However, there is limited information available regarding the bio-medical aspects of the differing drugs; particularly relating to adults with intellectual disability. Indeed the information available for the intellectual disabled population is limited to adults with Down syndrome. This review highlights the important pharmacological and clinical aspects of donepezil, rivastigmine, galantamine and memantine and supports the view that such drugs play an important part in the management of dementia in adults with intellectual disability. Future clinical and research issues are discussed.

Alzheimer Disease↗

PubMed2005

[Usefullness of bronchofiberscopy for difficult intubation in patients with severe motor and intellectual disabilities].

In 21 patients with severe motor and intellectual disabilities, bronchofiberoptic intubation was performed because of difficulty in tracheal intubation by direct laryngoscopy. The patients ranged from 3 to 35 years old (mean age: 20.2 years). Twenty patients (95.2%) were bedridden. Among the 21 patients, 15 had cerebral palsy and 20 had hypertonia. The reason for intubation were acute respiratory failure due to pneumonia in 17 cases, suffocation after aspiration of food in 2 cases, hypovolemic shock in 1 case, and laryngotracheomalacia in 1 case. Intubation was done pernasally in 15 patients and perorally in 10. It was successful in 20 cases without any significant complications. The Cormack score ranged from 3rd degree in 4 cases to 4th in 17 cases. The 20 cases of successful fiberoptic intubation were divided into 7 patients with and 13 without tracheostomy. The mortality rate was 14.3% in patients with tracheostomy and 30.8% in those without tracheostomy. When more than 4 intubation trials were needed, there was a significantly higher mortality rate. In neurologically handicapped patients with deformity or hypertonia of the oral, cervical, or airway structures, a bronchofiberoptic procedure may be recommended when there is difficulty with intubation.

Adolescent↗