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PubMed2004

Practitioner review: stress intervention for parents of children with intellectual disabilities.

BACKGROUND: Parents of children with intellectual disabilities are at increased risk for stress and other mental health problems. The purpose of the present review is to consider the evidence base for psychological intervention to remediate stress in these parents. METHODS: A selective review of interventions designed to reduce stress in parents of children with intellectual disabilities, with a focus on group interventions that incorporate various cognitive behavioural techniques. RESULTS: Research evidence suggests that standard service models (e.g., respite care, case management) probably help to reduce parental stress. The strongest evidence base is for cognitive behavioural group interventions, especially for the reduction of stress in mothers. Some data also indicate the potential value of parent-led support networks. CONCLUSIONS: More research and clinical development are needed to establish a firmer evidence base for stress interventions with parents of children with intellectual disabilities. There are also a number of potential practical implications of reducing parental stress for maximising the efficacy of general parent training interventions and also behavioural programmes for children's challenging behaviours.

Adult↗
PubMed2006

Maternal distress and expressed emotion: cross-sectional and longitudinal relationships with behavior problems of children with intellectual disabilities.

Mothers of children with intellectual disability were assessed at two time points, 2 years apart (n = 75 at Time 1, n = 56 at Time 2). Data were gathered on maternal distress, mental health, expressed emotion, and the child's internalizing and externalizing behavior problems. Consistent with previous research with families of children who have intellectual disability, maternal distress and children's behavior problems entered into a bidirectional relationship over time. This relationship was found to be specific to externalizing problems. Exploratory analyses also suggest that maternal distress and depression had a bidirectional longitudinal relationship. In terms of maternal expressed emotion, criticism and not emotional over-involvement was cross-sectionally but not longitudinally related to children's externalizing behavior problems and to maternal distress.

Adolescent↗
PubMed2007

Effects of a comprehensive health assessment programme for Australian adults with intellectual disability: a cluster randomized trial.

BACKGROUND: People with intellectual disability constitute approximately 2% of the population. They die prematurely, and often have a number of unrecognized or poorly managed medical conditions as well as inadequate health promotion and disease prevention. METHODS: A cluster randomized controlled trial with matched pairs was carried out. The participants were adults with intellectual disability (n = 453 in 34 clusters). The intervention was a health assessment programme to enhance interactions between the adult with intellectual disability, their carer and their general practitioner (GP). It prompted the systematic gathering of a health history and, subsequently, access to a GP for a guided health review and development of a health action plan. It also provided information about the health of adults with intellectual disability. Follow-up was for 1 year post intervention, with outcomes extracted from GPs' clinical records. RESULTS: Increased health promotion, disease prevention and case-finding activity was found in the intervention group. Compared with the control group there was a 6.6-fold increase in detection of vision impairment (95% confidence interval 1.9-40); a 30-fold increase in hearing testing (4.0-230); an increase in immunization updates [tetanus/diphtheria a 9-fold increase (4.2-19)], and improvements in women's health screening [Papanicolau smears were eight times more common (1.8-35)]. The intervention increased detection of new disease by 1.6 times (0.9-2.8). CONCLUSIONS: The Comprehensive Health Assessment Program (CHAP) produced a substantial increase in GPs' attention to the health needs of adults with intellectual disability with concomitantly more disease detection. The presumption that these will yield longer-term health benefits, while suggestive, remains unexamined.

Adult↗
PubMed2005

Health policy for persons with intellectual disability: experiences from Israel.

Intellectual disability (ID) is a life-long disability characterized by impaired cognitive and adaptive skills. Over the past few decades, a shift has occurred in the conceptualization and treatment of people with ID and research in health policy and health-care delivery has become increasingly global with a notable disparity between the developed and developing world. This review presents a literature overview of global health policy for ID with the intent to focus specifically on the policy and treatment within Israel. The methodology involved sites visits to care centers, discussions with stakeholders in health policy, and a literature review. We believe that Israel is in a unique position between a developed and developing culture. In particular, the distinct problems faced by the Arab and Bedouin community in terms of ID must be formally accounted for in Israel's future policies. Research from the developing world would be instructive to this end. The global approach in this presentation led to certain policy recommendations that take into account the uniqueness of Israel's position from a social, economic, religious, and demographic perspective. It is the hope that this paper will lead to an increased awareness of the challenges faced by persons with ID and their providers in all sectors of Israeli society and that the necessary policy recommendations will ultimately be adopted.

Adult↗
PubMed2004

Capacity of adults with intellectual disabilities to consent to sexual relationships.

BACKGROUND: For people with intellectual disabilities there is a difficult balance to be struck between empowering people to claim their sexual rights and protecting them from abuse. Hypothetically, services should be guided by whether a particular person with intellectual disabilities has the capacity to consent to sexual relationships. However, there has been little agreement on how to define such capacity. This study examines the issue of capacity to consent to sexual relationships using a functional approach. METHOD: Adults with intellectual disabilities (n = 60) and young people presumed in law able to consent (n = 60) were assessed for their sexual knowledge and vulnerability to abuse. RESULTS: Adults with intellectual disabilities were significantly less knowledgeable about almost all aspects of sex and appeared significantly more vulnerable to abuse, having difficulty at times distinguishing abusive from consenting relationships. Nevertheless, some adults with intellectual disabilities scored highly on all measures, especially if they had relatively high IQs and had had sex education. CONCLUSIONS: The reasons for the poorer knowledge and increased vulnerability of people with intellectual disabilities are discussed and it is recommended that they should have on-going access to sex education. Implications of the findings for definitions of capacity to consent to sexual relationships are considered.

Adolescent↗
PubMed2001

Helicobacter pylori infection in persons with intellectual disability in residential care in Israel.

Helicobacter pylori (formerly Campylobacter pylori ) was identified in 1982 by researchers from Australia as a pathogenic factor in peptic ulcer disease. Due to the few studies on H. pylori infection conducted in the population of persons with intellectual disability it was decided to conduct a clinical study in Israel. The purpose of the study was to determine the occurrence of H. pylori infection in persons who presented with severe dyspeptic symptoms and to monitor clinically the effect of treatment. The Division for Mental Retardation in Israel provides service to 6,022 persons in 53 residential care centers and 1 in central Israel was selected for this pilot study. The study has been performed since 1999 and each patient who came to the medical clinic of the institution with severe dyspeptic symptoms was examined clinically and a blood specimen drawn for IgG antibodies to H. pylori (ELISA, Pharmatop Millenia). In case of positive serology, triple drug treatment (amoxycillin, metronidazole, and pantoprazole or omeprazole) was initiated for 1 week. Since 1999 a total of 43 persons (total population in care was 224) had severe dyspeptic symptoms and 42 persons (98%, 26 males, 16 females, mean age 45 years, mean institutionalization 20 years) had Helicobacter infection. All patients were treated for 1 week, but six patients received an extra month of omeprazole due to persistent symptoms. At follow-up, clinically all patients had improvement and only seven still had minor complaints (83% treatment success). Persons with developmental disability, intellectual disability, or mental retardation in residential care presenting with severe dyspeptic symptoms had a high incidence of H. pylori infection. Therefore, we recommend serology or urea breath investigations in this population presenting with dyspeptic symptoms and triple drug treatment for 1 week in case of positive findings.

Adult↗
PubMedDate not supplied

Investigating intellectual disability: a genetic perspective.

Intellectual disability (ID) is a common paediatric problem. Investigation focused on determining the aetiology of ID is warranted because a specific diagnosis may assist in prognostication, recurrence risk counselling, and identification of therapeutic and educational interventions. Three groups of screening investigations can be justified on the basis of expert opinion, common sense and the small body of published evidence-based medicine. First, investigations where current evidence justifies routine use in the investigation of ID; second, investigations which should be considered in all children with ID, although there is insufficient current evidence to support routine use; and finally, investigations which currently have an unclear role in children with ID and should be restricted to specific clinical situations unless further evidence suggesting otherwise emerges. There is a great need for systematic evaluation of the diagnostic yield of investigation templates based on this proposed stratification of investigations.

Algorithms↗
PubMed1994

Perception of humor in cartoon riddles by adults with intellectual disability.

Young adults with intellectual disability, 15 with IQs of 55 to 75 and 15 with IQs of 40 to 54, rated 12 cartoon riddles of six levels of difficulty. Mirth and comprehension were also scored. Analyses indicated that participants considered the jokes funny but there was a strong tendency to respond to the visual aspects of the jokes rather than to the auditory aspects.

Adult↗
PubMed1999

Family intervention for intellectually disabled children. Randomised controlled trial.

BACKGROUND: Resources to address the needs of parents of intellectually disabled children in developing countries are limited. AIMS: The efficacy of interactive group psychoeducation on measures of parental attitude towards intellectual disability was assessed in southern India. METHOD: Fifty-seven parents randomised to 10 weeks of experimental and control therapy were assessed using the Parental Attitude Scale towards the Management of Intellectual Disability. The pre- and post-intervention measurements were done by a single-blinded rater and compared. RESULTS: The intervention group had a statistically significant increase in the outcome scores and clinical improvement in the total parental attitude score, orientation towards child-rearing knowledge towards intellectual disability and attitude towards management of intellectual disability, but no change in attitude towards the intellectual disability subscale. CONCLUSIONS: Interactive group psychoeducation is effective for changing the attitude of parents with intellectually disabled children, and is a viable option to be developed in situations where resources are limited.

Adult↗
PubMed2003

Responding to the challenges of ageing and dementia in intellectual disability in Ireland.

The intellectual disability (ID) population in Ireland is ageing and the number of older persons with the dual disability of ID and dementia is increasing. In spite of these demographic trends, as in other countries adequate policy and service provision for this population are lacking. This paper draws upon data available on the population with ID and dementia, reviews both generic and ID specific literature, considers the policy context and argues for a specific model of service provision. A service model is proposed for the development of multidisciplinary specialist teams within ID, delivered through mobile regional ID dementia clinics.

Adult↗
PubMed2007

Risk factors for psychiatric disturbance in children with intellectual disability.

BACKGROUND: Children with intellectual disability (ID) have a higher risk for psychiatric disturbance than their peers with normal intelligence, but research data on risk factors are insufficient and partially conflicting. METHOD: The subjects comprised 75 children with ID aged 6-13 years. Data were obtained from case files and the following four questionnaires completed by their parents or other carers: Developmental Behaviour Checklist, American Association of Mental Deficiency (AAMD) Adaptive Behavior Scale, a questionnaire on additional disabilities, and a questionnaire on family characteristics and child development. RESULTS: The risk of psychopathology was most significantly increased by moderate ID, limitations in adaptive behaviour, impaired language development, poor socialization, living with one biological parent, and low socio-economic status of the family. CONCLUSIONS: The risk of psychopathology in children with ID is increased by factors related to family characteristics and child development. Identifying these factors will help diagnose and possibly prevent psychiatric disorders in these children.

Activities of Daily Living↗
PubMed2005

Risk factors for low bone mineral density in individuals residing in a facility for the people with intellectual disability.

BACKGROUND: Individuals with intellectual disability (ID) are known to have a high prevalence of both low bone mineral density (BMD) and fractures with significant attendant morbidity. Effective strategies aimed at reducing fractures will be facilitated by the identification of predisposing risk factors. METHODS: Bone mineral density was measured by quantitative ultrasound of the calcaneus performed on 79 women and 132 men residing in a facility for adults with ID. Multiple variable logistic regression analysis was performed to determine the significance of risk factors for low BMD. RESULTS: Mobility impairment consistently appeared to be a significant risk factor for low BMD regardless of age or sex and especially for middle-aged men with profound ID. Further risk was identified for postmenopausal women taking enzyme inducing anticonvulsant medications and middle-aged men who were either smokers or tended to be short. Hispanic followed by Caucasian origin also put middle-aged males at a greater risk than their African-American counterparts. CONCLUSIONS: Specific risk factors for low BMD, some of which have potential for modification, were identified in the study population. Targeted strategies for risk factor reduction may result in a decrease in the high rate of fractures among these individuals.

Adult↗
PubMed2000

Results of barbiturate antiepileptic drug discontinuation on antipsychotic medication dose in individuals with intellectual disability.

Five individuals with intellectual disability prescribed both a barbiturate antiepileptic drug (AED) and an antipsychotic medication were identified in a public residential facility. It was hypothesized that antipsychotic medication was prescribed at doses higher than necessary as a result of inadvertent barbiturate AED behavioural side-effects thought to be part of the underlying psychiatric or behavioural condition. To test this hypothesis, barbiturate AEDs were gradually reduced, and replaced with either carbamazepine or valproic acid, and antipsychotic medication was gradually reduced as well. Challenging behaviours, such as physical aggression, self-injurious behaviour and property destruction, were measured with a frequency count or partial interval recording, and retrospectively analysed for time periods of approximately 60 days before phenobarbital reduction, after phenobarbital discontinuation and after the lowest antipsychotic medication dose. Challenging behaviour collectively decreased by 81.5% after barbiturate discontinuation, mean antipsychotic medication dose significantly decreased from 146 mg day(-1) (SD = 98) to 106 mg day(-1) (SD = 88) chlorpromazine equivalence, and antipsychotic medication was discontinued in the cases of two individuals. Compared to the prebarbiturate AED reduction period, challenging behaviour collectively decreased by 96.3% after the lowest antipsychotic medication dose, which confirmed that reduced antipsychotic medication was not achieved at the expense of behaviour deterioration. The data supported the hypothesis that discontinuation of barbiturate AEDs results in decreased challenging behaviour and less antipsychotic medication.

Adult↗
PubMed2005

The development of a new measure for the assessment of psychopathology in adults with intellectual disability.

BACKGROUND: People with intellectual disability (ID) and untreated psychiatric disorder lead unnecessarily difficult and unhappy lives. The prevalence of mental illness in children and adults with ID is greater than that found in the general population. A carer-completed checklist of psychopathology that could be used with both children and adults would help identify those individuals with ID most likely to have a mental health problem, help ensure that they receive the limited services that are usually available and also assist the process of clinical assessment, diagnosis and management. METHOD: This research aimed to develop a reliable and valid carer-completed checklist of psychopathology for adults with ID by redeveloping an existing measure for children with ID, the Developmental Behaviour Checklist (DBC-P). The new checklist, The Developmental Behaviour Checklist for Adults (DBC-A) was devised by changing, deleting and adding to DBC-P items. Reliability studies were conducted with paid and family carers, and DBC-A scores were compared with the results from two other measures of psychopathology. RESULTS: One DBC-P item was deleted, seven items changed and 12 items added. The psychometric properties of this new checklist, the DBC for Adults with ID (DBC-A), were investigated and found to be satisfactory. Intraclass correlations for test-retest and inter-rater reliability ranged from 0.72 to 0.85, and concurrent validity with two measures of emotional and behavioural disturbance was satisfactory. CONCLUSIONS: The carer-completed DBC-A provides a broad and comprehensive survey of the emotional and behavioural problems of adults with ID. It has satisfactory psychometric properties and therefore can be used with confidence in clinical, research and service settings, and its development allows continuous assessment of psychopathology across the lifespan for all people with ID.

Adolescent↗
PubMed1997

The epidemiology of Alzheimer disease in intellectual disability: results and recommendations from an international conference.

Among adults with intellectual disability, virtually everyone with Down's syndrome (DS) over the age of 40 years has neuropathology currently viewed to be consistent with a diagnosis of Alzheimer disease (AD), while other adults with intellectual disability without DS display an increased prevalence of Alzheimer-type neuropathology after they reach the age of 65. This paper presents the results of discussions by an epidemiology workgroup, formed at an international conference convened to discuss AD among people with intellectual disability, concerning: (1) the incidence and prevalence of clinical dementia in adults with intellectual disability; (2) risk factors for the development of AD in adults with intellectual disability; and (3) a minimum data set that would be of great utility for future research on AD in adults with intellectual disability.

Aged↗
PubMed2004

Pain assessment in intellectually disabled people: non-verbal indicators.

BACKGROUND: Although important progress has been made during the past decade, research on pain in people with intellectual disabilities is still scarce. Pain assessment in people with intellectual disabilities is a frequent and difficult problem, especially for nurses working with people with intellectual disabilities on a daily basis. Gathering more information about pain in people with intellectual disabilities is of major importance and relevance for nursing, and adds to the developing body of knowledge. OBJECTIVE: To investigate the nature and relative importance of non-verbal indicators used by nurses to assess pain in people with a severe or profound intellectual disability. METHODS: A questionnaire consisting of 158 indicators of pain was used. A total of 135 nurses from nine institutions specializing in the care of people with intellectual disability were asked to rate each indicator on a scale of 1-10 to show which non-verbal expressions they considered important in diagnosing pain. RESULTS: A total of 109 nurses responded. All 158 indicators were mentioned as being important to indicate pain. All except four had a range of 9. Seven (moaning during manipulation, crying during manipulation, painful facial expression during manipulation, swelling, screaming during manipulation, not using (affected) body part, and moving the body in a specific way of behaving) were reported as 'very important' by more than 50% of nurses. The lowest score (median 5.5; minimum 1, maximum 10) was given to the indicator 'waving arm movements'. The pain of people with severe intellectual disability appeared to be assessed differently from that of people with profound intellectual disability. Indicators belonging to the 'physiological' category scored relatively higher in the group of nurses specializing in profound disability. In contrast, indicators belonging to the 'social-emotional' category were scored relatively higher by nurses specializing in severe disability. CONCLUSION: Nurses used a wide range of indicators to assess pain in people with intellectual disability. Functional abilities and level of disability seem to influence the indicators used.

Attitude of Health Personnel↗
PubMed2002

People with an intellectual disability in the criminal justice system: developing an assessment tool for measuring prevalence.

OBJECTIVES: To develop a screening tool to detect those who may have intellectual disabilities or borderline intellectual disabilities in the criminal justice system (CJS). DESIGN: The items for the assessment tool were based on data from an earlier study. The assessment tool was piloted on 80 participants, who also completed a short form of the WAIS-R. METHOD: Items for the screening tool were derived using a discriminant analysis procedure with data from a previous study (measuring IQ and other factors in people on probation). A sample of 40 participants with an intellectual disability and 40 with an IQ in the normal range then completed the screening measure and the WAIS-R. RESULTS: The screening measure showed good concurrent validity, and correctly classified 87% of participants. CONCLUSIONS: The screening measure is a useful tool for people working in the CJS to use in the identification of those who may be in need of further support owing to an intellectual disability or borderline intellectual disability.

Adult↗
PubMed2003

Health indicators for people with intellectual disabilities: a European perspective.

People with intellectual disabilities make up about 1% of the population of Europe. As trends toward community life advance, they have become more visible and more likely to access generic health systems. Yet evidence suggests that there are striking disparities between the health of this group and that of the general population. Increased longevity means that adults in this group expect to live longer lives and thus to encounter age-related risks for various health conditions. The 'Pomona' project, funded by the EU Health Monitoring Unit, aims to develop a set of health indicators for people with intellectual disabilities. It will build on the work accomplished by the team developing ECHI--European Community Health Indicators. This article outlines the rationale for the project, key elements in its implementation and expected outcomes.

Demography↗