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PubMed1998

Vocational aspirations of sheltered workshop workers with intellectual disability in Hong Kong.

In Hong Kong, the understanding of the vocational experience of sheltered workshop workers with intellectual disability is still relatively meagre. Twenty-three participants with intellectual disability and four professionals from their sheltered workshops were interviewed using mainly open-ended questions. Content analysis and constant comparative method were adopted to categorize the descriptive data into themes that were salient to the participants' vocational aspirations to try open employment. The insider perspective showed that all participants were motivated to have employment. Thirteen participants with intellectual disability preferred to try open employment and they had individual vocational preferences which mainly belonged to unskilled and manual work. The professionals pointed out that sheltered workshop workers with intellectual disability needed professionals' assistance and parents' consent in moving on to open employment, and parents were the key people in this decision-making process. These findings indicate that sheltered workshop workers with intellectual disability have limited self-determination in the work arena. The need to empower people with intellectual disability, improve the quality of sheltered employment services and increase the involvement of their family members are discussed.

Adolescent↗

PubMed2004

Regional variation in dental procedures among people with an intellectual disability, Ontario, 1995-2001.

BACKGROUND: The literature indicates that people with an intellectual disability have a prevalence of dental caries that is either lower than or similar to that of the general population. However, many of their caries go untreated, and extractions are more often used as a means of treatment than in the general population. A substantial percentage (40%) of day admissions to hospital of people with intellectual disabilities in Ontario is related to dental diseases. In this paper, we examine whether rates of in-hospital dental procedures are evenly distributed across Ontario and discuss possible explanations for the findings. MATERIALS AND METHOD: A retrospective analysis was made of routinely collected hospital admission data for people with an intellectual disability. Age- and gender-adjusted rates for dental procedures were calculated using the direct method of adjustment and 1996 census population estimates of Ontario. Three different summary measures for the assessment of regional variation were used. RESULTS: Two areas had dental procedure rates among those with an intellectual disability that were significantly lower than the overall Ontario rate: Hamilton-Wentworth and Quinte-Kingston and Rideau. The 3 district health council areas with the highest rates for dental procedures were Niagara, Essex-Kent and Lambton, and Durham-Haliburton-Kawartha and Pine Ridge; all 3 rates were higher than the overall Ontario rate. CONCLUSIONS: The use of day surgery and in-hospital visits to treat dental diseases in people with an intellectual disability varies considerably by region in Ontario. Observed differences may indicate inequities.

Ambulatory Surgical Procedures↗

PubMed2005

Seizure freedom with different therapeutic regimens in intellectually disabled epileptic patients.

BACKGROUND: Epilepsy is a frequent condition in persons with intellectual disability and is more often difficult to treat than in the average population. Seizure freedom is the primary therapeutic goal which has important implications for the patient's quality of life. The aim of this study was to find out which antiepileptic therapy regimens (monotherapy or combination therapy) are effective in achieving this goal in intellectually disabled epilepsy patients. We were especially interested in the impact of the new antiepileptic drugs (AEDs) which were introduced during the past decade. METHOD: We investigated retrospectively the antiepileptic regimens on which the resident patients of a large epilepsy centre (as a rule with additional intellectual disabilities of different degrees) were seizure free in 2002. Information on antiepileptic medication and seizure frequency was taken out of the individual case documentation. It was also determined whether seizure free patients had already been seizure free in 1992. RESULTS: Two hundred and forty out of 675 patients (35,6%) with epilepsy were seizure free. The proportion of seizure freedom was 43,7% in patients with borderline intelligence, 39,2% in mild, 33,2% in moderate, 31,9% in severe, and 21,9% in profound intellectual disability. One hundred and twenty-two (50,8%) seizure free patients were on monotherapy; 53 of them were on CBZ (PB: 34, VPA: 25, PHT: 7, LTG: 3). Ninety-three patients (38,7%) were on duotherapies, CBZ/PB (27 patients), PB/PHT (17), and LTG/VPA (14) being the commonest. Of 18 (7,5%) triple therapies, LTG/PB/VPA (4 patients) was the commonest. Taken together, the five most frequent therapeutic regimens were CBZ monotherapy, PB monotherapy, CBZ/PB, VPA monotherapy and PB/PHT (a clear preponderance of classic AEDs). A distinction was made between "old seizure free" (seizure free already in 1992) and "new seizure free" (in 1992 still seizures) patients. In the 132 old seizure free patients the classic AEDs prevailed again, monotherapies with CBZ, PB and VPA being the most frequent regimens. In comparison, in the 78 new seizure free patients the novel combination LTG/VPA was the third most frequent, after the classic regimens CBZ/PB and CBZ; PB monotherapies were rare. CONCLUSION: In a majority of intellectually disabled patients with epilepsy (including those who became seizure free since 1992), complete seizure control has been achieved by monotherapy or duotherapy with classic AEDs. Of the new AEDs LTG in combination with VPA appears to be an important innovation.

Adolescent↗

PubMedDate not supplied

Parental stress in families of young people with an intellectual disability: the nurses role.

This study examines stress in the parents of adolescents and young adults with an intellectual disability and compares it with stress reported by parents with offspring without an intellectual disability. An initial qualitative pilot study lead the authors to Baine et al's Stress Scale. The Baine et al scale is relatively new and addresses aspects of stress not previously investigated among the parents of people with an intellectual disability, namely, stress from the difficult relationship with health professionals and service providers and negative community attitudes to people with an intellectual disability. Because of the relevance to nurses, particular interest is paid to stress from the relationship parents have with health professionals and service providers. The study found significantly greater stress in the parents of young people with an intellectual disability in all aspects of stress examined, including stress from the individual with the disability, internal family stress, stress from the financial strain of having a family member with a disability, stress from community attitudes and stress perceived from the relationship with health professionals and service providers. These findings are distressing in the light of government and service agency policies of community care and independent living. This paper makes recommendations relevant to nurses and identifies difficulties for parents of young people with an intellectual disability in the implementation of current government policy.

Adolescent↗

PubMed2004

Violence in the care of adult persons with intellectual disabilities.

BACKGROUND: Violence, for example physical, psychological, financial and sexual abuse and neglect, exists and is an under-reported problem in caring situations involving adult persons with intellectual disabilities and their caregivers, where both parties can be seen as victims and perpetrators. AIMS AND OBJECTIVES: To investigate violent situations involving Swedish adult persons with intellectual disabilities and their caregivers in group-dwellings. DESIGN: A total population-based survey. METHODS: A questionnaire, including violence towards adults with intellectual disabilities and violence towards staff members during 1 year, was sent to all staff members (n = 164) from 17 care settings for adults with intellectual disabilities with a response rate of 74%. RESULTS: Thirty-five per cent of 122 respondents admitted they had been implicated in or witnessed a violent incident towards an adult person with intellectual disabilities and 14% of the staff members admitted they themselves had been the perpetrators. Sixty-one per cent of the staff members described various situations when they were exposed to violence from an adult person with intellectual disabilities. Physical violence was most frequently reported. Most of the aggression occurred in helping situations when persons with intellectual disabilities did not co-operate or when both actors reacted with violence. The violent situations led the staff members to feel powerless and inadequate. In order to cope they discussed with each other or with the manager. CONCLUSIONS: Violence seems to be accepted as a natural part of the daily care for adult persons with intellectual disabilities. Most of the violence is physical and psychological and occurs in close helping situations. RELEVANCE TO CLINICAL PRACTICE: Supportive interventions, i.e. supervision for the staff members and training of communication skills individually or in group for the adults with intellectual disabilities.

Adaptation, Psychological↗

PubMed2000

Assessing the capacity of people with intellectual disabilities to be witnesses in court.

BACKGROUND: People with intellectual disabilities who have been victims or other witnesses of crime have had limited access to the criminal justice system, often on the basis of assumptions about their incapacity to be interviewed by the police and to give evidence in court. The aim of this study was to assess their capacity to be witnesses in court. METHODS: Forty-nine men and women with intellectual disabilities, all of whom were potential witnesses of ill-treatment, were assessed in order to provide advice, initially to the police, about their capacity to be interviewed for judicial purposes. The assessments included evaluations of each person's intellectual ability, memory, acquiescence, suggestibility, and their ability to explain concepts relating to the oath. RESULTS: Only 37 (76%) were able to complete the assessments. Most of those with a Full Scale IQ score of > or = 60 had a basic understanding of the oath, compared with only a third of those with IQ scores between 50 and 59, and none of those with IQ scores < 50. Nevertheless, some of the people who were unable to demonstrate an understanding of the oath did understand the words 'truth' and 'lie', especially when asked about these concepts in relation to concrete examples. CONCLUSIONS: While intellectual ability appears to be the best overall predictor of the capacity of people with intellectual disabilities to act as witnesses, confining witnesses to those who could explain the meaning of the oath would mean that a number of persons who might be interviewed by the police and subsequently appear in court could be excluded from the judicial process.

Adult↗

PubMed2005

Health of people with intellectual disabilities: a review of factors influencing access to health care.

The rights and needs of people with intellectual disabilities are being acknowledged within Department of Health policies. In spite of this, however, it is frequently cited that people with intellectual disabilities are vulnerable to many health problems but have poor access to health-related services. There are many factors that can act as barriers to people with intellectual disabilities enjoying good health and accessing services. These include: (a) a lack of clarity regarding responsibilities for ensuring that health policies are operationalized; (b) social and residential aspects of life being emphasized within the quality of life framework for evaluating services for people with intellectual disabilities, with health as an under-represented domain; (c) a lack of reliable and valid measures that can be used with carers and people with intellectual disabilities to explore health, particularly in comparison to literature on the general population; (d) potential communication difficulties (between the person with intellectual disabilities, their carers and health staff) that can impact on decision-making processes from early identification of health problems through to the stage of gaining appropriate treatment. These areas are discussed giving rise to questions and challenges for policy makers, researchers and clinicians.

Caregivers↗

PubMed1997

The age-related incidences of oesophageal carcinoma in intellectually disabled individuals in institutes in The Netherlands.

OBJECTIVE: An increased age-related incidence of oesophageal cancer in people with intellectual disability has been suggested by studies in the Netherlands. Gastro-oesophageal reflux disease (GORD), as documented by pH testing, occurs frequently in the intellectually disabled population, being found in nearly 50% of those with an IQ less than 50, while Barrett's oesophagus is found in about 15-26%. DESIGN: We compared the age-related incidence of oesophageal cancer in institutionalized, intellectually disabled individuals in the Netherlands with the age-related incidence in the general Dutch population. METHODS: Data were provided by the Netherlands Cancer Registry. The patient's institute physician was asked to complete a questionnaire about the diagnosis, which was endoscopically and histologically confirmed. RESULTS: The incidence of oesophageal carcinoma was 20 in 168,000 person-years. The expected incidence for oesophageal cancer, based on age-related incidence in the general population, was 7.0, resulting in a standardized morbidity ratio in the population with intellectual disability of 2.9 (confidence limits, 1.8-4.1; P < 0.001). Endoscopic findings were as follows: in 18/20 intellectually disabled carcinoma patients an adenocarcinoma was found; the remaining two patients had a squamous cell carcinoma. Barrett's epithelium was observed in nine patients (45%), eight (42%) of whom showed a peptic stricture as well. In 15 (75%) cancer patients reflux oesophagitis was found, accompanied in 14 cases by a hiatal hernia. CONCLUSION: A standardized morbidity ratio for oesophageal carcinoma of 2.9 was found in the intellectually disabled population as compared to the general population. Early detection and treatment of GORD in the population with intellectual disability is of paramount importance to prevent the development of Barrett's dysplasia and carcinoma.

Adenocarcinoma↗

PubMed2006

College students' perceptions of persons with intellectual disability at three different ages.

Studies of the perception of persons with intellectual disabilities have primarily focused on the evaluator's peers without specific reference to age or gender of the target person with intellectual disability. Using the semantic differential technique (assessments based on three independent factors: evaluation, activity and potency), 320 college students evaluated 1 person with intellectual disability, where gender (male, female) and age (3, 12, 20 years) were specified. Results indicated statistically different perceptions in the activity factor by age. The older the person with intellectually disability was, the more negative the perceptions on the activity factor. Implications of the results are discussed.

Adolescent↗

PubMed2002

Extra-individual sources of social support as described by adults with mild intellectual disabilities.

The extra-individual social support responses provided by adults with intellectual disabilities on a social support survey were examined. Felton and Berry (1992) argued that extra-individual social support, support from larger than individual entities, is a valid source of social support for older adults. We hypothesized that extra-individual support would also be relevant to adults with intellectual disabilities. Results showed that 43% of participants with intellectual disabilities listed extra-individual support sources in their social networks or as providers of one of several support functions. The most popular forms of extra-individual support were those from "staff" and "work." Findings are discussed in terms of implications for social support measurement for persons with intellectual disabilities.

Adult↗

PubMed1998

Maladaptive behaviours and symptoms of dementia in adults with Down's syndrome compared with adults with intellectual disability of other aetiologies.

Dementia commonly occurs in elderly people with intellectual disability, especially those with Down's syndrome. The non-cognitive symptoms of dementia can be of greater significance to individuals and carers than the cognitive changes caused by this condition. It is not known whether there are differences between people with Down's syndrome and those with intellectual disability of other causes with regard to the prevalence of such symptoms. The present study was undertaken to draw a comparison between a group with Down's syndrome and dementia (n = 19), and a group with intellectual disability of other causes and dementia (n = 26). Maladaptive behaviours and psychiatric symptomatology were assessed in both groups. The group with Down's syndrome had a higher prevalence of low mood, restlessness/excessive overactivity, disturbed sleep, being excessively uncooperative and auditory hallucinations. Aggression occurred with greater frequency in those subjects with intellectual disability of other causes. These findings are of epidemiological importance in terms of service planning and understanding psychiatric presentation.

Adult↗

PubMed1993

Children's attitudes toward peers with intellectual disability.

The policy of inclusion (mainstreaming) of children with an intellectual disability in regular schools has raised questions about the extent to which 'true' integration is possible. One important aspect of integration is social acceptance by the regular class children. The purpose of this study was to determine the attitudes of children in primary and intermediate classrooms towards children with an intellectual disability housed in satellite classrooms at public schools. Teachers in the satellite classrooms completed a school integration questionnaire. Attitudes towards and the social distance afforded children in satellite classrooms were relatively positive across all children, especially girls. In particular, attitudes were more positive in schools which had more vigorous administrative policies concerning academic and social integration. The results are discussed in terms of current mainstreaming policies for children with intellectual disabilities.

Adolescent↗

PubMed1999

Social comparison, self-esteem and depression in people with intellectual disability.

The present study explores the relationship between social comparison processes, self-esteem and depression in people with intellectual disability. Forty-three people with mild and moderate intellectual disability completed adapted measures of self-esteem and social comparison. The social comparison scale offers subscale scores on achievement, social attractiveness and group belonging dimensions. The self-esteem scale offers subscale scores for positive and negative self-esteem. A significant positive correlation was found between positive self-esteem and social comparison on the achievement dimension. Depression was significantly negatively correlated with social comparison on the social attractiveness and group belonging dimensions, and with positive self-esteem. Regression analysis showed that depression was significantly and independently predicted only by social comparison on the social attractiveness dimension. The present authors conclude that social comparison is associated with self-esteem and depression in people with intellectual disability in the same way as it is for people without intellectual disability. Further exploration of social comparison process in people with intellectual disability may inform cognitive behavioural interventions for this group of people.

Adult↗

PubMed2003

Attitudes of senior psychiatry residents toward persons with intellectual disabilities.

OBJECTIVES: This study examined the attitudes of senior residents in psychiatry toward persons with intellectual disabilities. Examining residents' attitudes will highlight areas of training that could be enhanced to better prepare psychiatrists to work with individuals with intellectual disabilities. METHOD: A questionnaire was distributed to senior psychiatry residents at a Canada-wide preparatory session for the Royal College of Physicians and Surgeons of Canada. Included in the questionnaire was the Community Living Attitudes Scale Mental Retardation--Short Form (CLAS) as well as demographic items (for example, age, sex, and marital status) and questions about training in intellectual disabilities. Scores on the 4 CLAS subscales (Empowerment, Similarity, Exclusion, and Sheltering) are reported, and analyses of variance were performed to identify factors associated with each subscale score. The residents' scores are compared with those obtained in surveys of other groups. RESULTS: Fifty-eight senior residents from across Canada completed the questionnaire. The residents' scores favored Empowerment and Similarity over Exclusion and Sheltering. Men and women responded differently. Training in intellectual disabilities during residency only appeared to influence the Similarity subscale scores. CONCLUSION: Senior psychiatry residents hold attitudes toward persons with intellectual disabilities that are not entirely consistent with the community living philosophic paradigm. More research is needed to uncover how attitudes of psychiatrists develop, as well as how training can influence attitudes.

Adolescent↗

PubMed2006

Postsurgical outcome in pediatric patients with epilepsy: a comparison of patients with intellectual disabilities, subaverage intelligence, and average-range intelligence.

PURPOSE: Intellectual disabilities are often associated with bilateral or diffuse morphologic brain damage. The chances of becoming seizure free after focal surgery are therefore considered to be worse in patients with intellectual disabilities. The risk of postoperative cognitive deficits could increase because diffuse brain damage lowers the patient's ability to compensate for surgically induced deficits. Several studies in adult patients have indicated that IQ alone is not a good predictor of postoperative cognitive and seizure outcome. Our study evaluated this subject in children and adolescents. METHODS: Pediatric patients with intellectual disabilities (IQ < or = 70), subaverage intelligence (IQ between 71 and 85), or average-range intelligence (IQ > 85) were matched according to several clinical and etiologic criteria to determine the influence of IQ (N = 66). RESULTS: No dependency of seizure outcome, postoperative cognitive development, and behavioral outcome on the IQ level was found. All groups slightly improved in attention while memory functions tended to decrease and executive functions were stable. School placement remained unchanged for the majority of patients. Between 67 and 78% were seizure free 1 year after surgery (Engel outcome class I). CONCLUSIONS: IQ alone is not a good predictor of postoperative outcome in pediatric patients with epilepsy. As with patients of average-range intelligence, the decision to operate on patients with a low level of intelligence should depend on the results of the presurgical diagnostics. If the results of the neuropsychological examination indicate diffuse functional impairment, this should not hinder further steps, if all other findings are consistent.

Achievement↗

PubMed2000

New insights into the genetic basis of intellectual disabilities.

BACKGROUND: Within general practice patients with intellectual disabilities are common. OBJECTIVE: This article sheds some new light on the underlying genetic mechanisms of intellectual disabilities. It outlines the genetic basis of known inherited and sporadic causes that have recently been understood through new molecular advances. DISCUSSION: General practice has an important role to play in pursuing a precise biomedical diagnosis by improving information provided to the patient and family regarding recurrence risks and prognoses as well as management issues specific to the underlying condition. New molecular techniques are providing us with specific diagnostic tools as well as improving our understanding of the complex mechanisms that contribute to what is known as human intelligence.

Child↗

PubMed1998

Cooperative learning and social acceptance of children with mild intellectual disability.

The effects of the participation of non-disabled children in a cooperative learning programme on their social acceptance of classmates with mild intellectual disability was examined. A sample of 24 children with mild intellectual disability in the 9-11-year-old age-range was identified from educational psychologists' case records. All of the children were receiving mainstreaming special education programmes at the time of the study. Twelve of the children had previously attended special education classes, while the remainder had always attended regular classes. Half of the children's regular classes were randomly assigned to either receive an experimental cooperative learning programme or to serve as control classrooms. The non-disabled children in the experimental classes showed significant increases in their social acceptance (sociometric ratings) of the children with mild intellectual disability, both immediately following the programme and 5 weeks later, but no such increases were evident in the children in the control classrooms. This pattern held for both the former special class pupils and the children with mild intellectual disability who had never attended special classes. The results confirm the usefulness of cooperative learning strategies for enhancing the social acceptance of children with mild intellectual disability in mainstreaming special educational programmes, regardless of the nature of their previous special educational provisions.

Child↗

PubMedDate not supplied

Mortality and morbidity among older adults with intellectual disability: health services considerations.

PURPOSE: Described is a study of the mortality and morbidity characteristics of 2752 adults with intellectual disability, age 40 and older, who died over a 10 year period in one American state. RESULTS: The main finding was that although individuals in the current generation of older adults with intellectual disability still generally die at an earlier age than do adults in the general population (average age at death: 66.1 years), many adults with intellectual disability live as long as their age peers in the general population. The results suggest that the longevity of adults with intellectual disability, whose aetiology is not attributable to organic causes, is progressively increasing. The results also confirm an increased longevity for adults with Down syndrome (average age at death: 55.8 years). Findings also showed that the causes of death for the study cohort were similar to those of the general older population, with cardiovascular, respiratory and neoplastic diseases among the most prominent causes of death. CONCLUSIONS: It was proposed that clinical and prophylactic health practices could have significant social and health care consequences for delaying the onset or minimizing the occurrence of life threatening diseases (and thus prolonging life) in adults with intellectual disability. It was suggested that clinical practices could be implemented that deter the onset and lessen the impact and burden of older age-related diseases and secondary conditions and that greater attention needs to be given to training of health care professionals in the area of geriatric medicine and intellectual disability.

Adult↗