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Results for “Intellectual Disability”

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PubMed1991

The aetiology of intellectual disability in Western Australia: a community-based study.

A register of intellectual disability is being established to assess the level and aetiology of intellectual disability in all children born and/or living in Western Australia. 1602 children aged between six and 16 years were identified who had IQs less than 70. 40 per cent had a definite genetic basis, 20 per cent an environmental cause and 40 per cent were of unknown aetiology. The insult was prenatal in 61 per cent, 10 per cent had a possible perinatal cause, 8 per cent were postnatal and for 21 per cent the timing could not be assessed. Approximately 20 per cent had concomitant cerebral palsy and 13 per cent were epileptic. A disparity was found between rural and urban areas, the prevalence being 9.9 and 6.5 per 1000 live births.

Adolescent↗

PubMed1998

Reliability and validity of the Mini PAS-ADD for assessing psychiatric disorders in adults with intellectual disability.

The Mini PAS-ADD is an assessment schedule for psychiatric disorders in people with an intellectual disability. It is designed to provide a link between the mental health expertise of psychiatrists and psychologists, and the detailed knowledge of individual service users possessed by support staff. In broad terms, the aim of the Mini PAS-ADD is to enable non-psychiatrists accurately to recognize clinically significant psychiatric disorders in the people who they care for, so that they can make informed referral decisions. The instrument comprises 86 psychiatric symptoms and generates a series of subscores on: depression, anxiety and phobias, mania, obsessive-compulsive disorder, psychosis, unspecified disorder (including dementia), and pervasive developmental disorder (autism). The present paper reports the results of a study investigating internal consistency, inter-rater agreement and validity in relation to clinical opinion, using a sample of 68 people with intellectual disability who were in contact with psychiatric services. In terms of the instrument fulfilling its main intended function, i.e. accurate case recognition, the crucial question was whether the support workers, with their lesser knowledge of psychopathology, were also able to correctly identify cases identified by expert clinicians. The validity results in this respect (81% agreement on case recognition) were sufficiently good that it is to be anticipated that the Mini PAS-ADD should have a significant impact on the identification of psychiatric disorders in the community of people with intellectual disability.

Adult↗

PubMed1996

The relevance of Vygotsky's theory of the "zone of proximal development' to the assessment of children with intellectual disabilities.

This paper reports a study which investigated the relevance of Vygotsky's concept of the "zone of proximal development' (ZPD) to the assessment of children with intellectual disabilities. The ZPD is the difference between a child's actual level of development shown by unassisted performance, and his or her potential level as indicated by assisted performance. This study aimed to test the validity of measuring the ZPD both among children with intellectual disabilities and in the area of map use. The results are discussed in terms of their bearing on the issues of assessment, instruction and the concept of intellectual disability.

Achievement↗

PubMed1996

[The prevalence rate and etiology of severe motor and intellectual disabilities syndrome in Okinawa].

We studied sixty-three children of severe motor and intellectual disabilities syndrome aged between 3 and 5 years, who live in Okinawa. Severe motor and intellectual disabilities syndrome were defined as those who belong to classes 1 approximately 4 of Ohshima's classification (incapable of walking with IQs not more than 35). The prevalence rate was about 1.12/1,000 live births. Forty-four% of the total children belonged to class 1 of Ohshima's classification (bedridden and IQs less than 20). The factors were: congenital 31.7%, perinatal 38.1%, postnatal 14.3%, and unknown 15.9%. The perinatal factor was still relatively high as compared with the others.

Child, Preschool↗

PubMed2001

[Epilepsy in patients with severe motor and intellectual disabilities: a long-term follow-up].

Long-term prognosis of epilepsy was investigated on 117 institutionalized patients with severe motor and intellectual disabilities, who were above 15 years of age in 1977, for a 20-year-period from 1977 to 1997. The incidence of epilepsy was 64.1% (75 patients), which was active in 28 patients (37.3%). The patients with the most severe psychomotor disabilities (bedridden and DQ < 20) showed the highest incidence of epilepsy (85.0%). Patients who died during the follow-up period showed higher incidence of active epilepsy (p < 0.01). During the follow-up of 94 surviving patients, persistence, relapse, and onset of seizures were frequent in patients with most severe intellectual disability, whereas those with less severe intellectual disability (20 < DQ < 35) were all seizure-free. Twenty-one patients had active epilepsy; symptomatic partial epilepsy in 17 (81.0%) and generalized epilepsy in 4 (19.0%). Notably, 5 of the 6 patients with persistent frequent seizures had age-dependent epileptic encephalopathy; persistent Lennox-Gastaut syndrome (LGS) (2 patients), severe epilepsy with multiple independent spike foci evolved from West syndrome (WS) and LGS (2 patients), and partial epilepsy with the history of LGS (1 patient).

Adolescent↗

PubMedDate not supplied

Parenting education for parents with intellectual disabilities: a review of outcome studies.

Parents with intellectual disabilities (i.e., IQ < 80; mental retardation) are overrepresented in child maltreatment cases and have a variety of parenting skill deficits. Their children are at risk for neglect, developmental delay, and behavioral disorders. This review of parenting education interventions for such parents identified 20 published studies with adequate outcome data. A total of 190 such parents (188 mothers, 2 fathers), with IQs ranging from 50 to 79 were involved. Parenting skills trained included basic child-care, safety, nutrition, problem solving, positive parent-child interactions, and child behavior management. The most common instructional approach was behavioral (e.g., task analysis, modeling, feedback, reinforcement). Overall, initial training, follow-up, and social validity results are encouraging. Generalization and child outcome data are weak. Further research is needed to (a) identify variables associated with responsiveness to intervention, and (b) develop and compare innovative programs that teach parents with cognitive disabilities the necessary generalized skills to demonstrate long-term beneficial effects on their children.

Adult↗

PubMed1999

Inpatient care and its outcome in a specialist psychiatric unit for people with intellectual disability: a prospective study.

The outcome of treatment in care units has been thought to reflect the effectiveness of treatment. There have been only a few studies describing inpatient care and its outcome in patients with intellectual disability and psychiatric symptoms. The present study describes the psychiatric inpatient treatment in the specialist psychiatric unit of the Special Welfare District of Southwest Finland and the need for aftercare among people with intellectual disability and psychiatric disorders (n = 40). As an outcome measure of care, the level of psychiatric symptoms was evaluated either with the Brief Psychiatric Rating Scale (BPRS) or with the Diagnostic Assessment for the Severely Handicapped (DASH) scale; self-reports (visual analogue scale) were also used. Patients' psychotic symptoms were reduced significantly on the BPRS during inpatient care and aftercare, but non-psychotic symptoms were reduced significantly only during aftercare. For one patient, the psychiatric symptoms were reduced significantly during inpatient care on the DASH scale, while the psychiatric symptoms remained the same for three patients. Patients and their primary carers considered the patient's psychiatric condition to have improved significantly during inpatient care, but not during aftercare. The specialist unit filled the gap in the care of people with intellectual disability and psychiatric problems in Southwest Finland. It is concluded that psychotic patients particularly benefit from the inpatient care in the specialist psychiatric unit. The care in the unit should include support for primary carers. All patients' outpatient treatment should also be re-evaluated. The present study poses two important questions. Firstly, could these treatment outcomes have been achieved with other interventions? Secondly, what are the necessary services for people with intellectual disability?

Adolescent↗

PubMed1997

Dental erosions and gastro-oesophageal reflux disease in institutionalized intellectually disabled individuals.

OBJECTIVE: Both exogenous acids, from the diet, and endogenous acids, from stomach juice, can dissolve the enamel mineral, resulting in dental erosions. Gastric acid may reach the mouth by gastro-oesophageal reflux disease (GERD), recurrent vomiting, rumination and regurgitation. These conditions are frequently found in the intellectually disabled population. Therefore, we investigated the presence of dental erosions in combination with GERD among intellectually disabled inhabitants, with an IQ < 50, taken from three Dutch institutes. MATERIALS AND METHODS: At random 63 individuals underwent an oesophageal pH test and dental screening and possible predisposing and attributable factors were determined. An abnormal pH level was defined as a pH < 4, > 4.5% of the measured time. Subjects with dental erosions were compared to those without dental erosions. RESULTS: In 29 out of 63 (46.0%) cases evidence of dental erosions was found. In 19 of these 29 subjects with erosions (65.5%) GERD was diagnosed, compared to nine (26.5%) out of 34 subjects without erosions (P = 0.04). In the subjects with erosions mean duration of pH < 4 was 15.6% (range: 0.5-90.5) compared to 6.3% (range 0-40.4) in subjects without erosions (P = 0.02). An IQ < 35 was found to be predisposing (P < 0.001). CONCLUSION: In this population of 63 institutionalised intellectually disabled persons dental erosions were diagnosed in 46%. Sixty-five per cent of them had GERD. Individuals with longer duration of pH < 4 than 6.3% of the measured time and with an IQ < 35 were at higher risk to develop dental erosions. This study shows that dental erosions in the intellectually disabled population might be an oral manifestation of GERD.

Adolescent↗

PubMed1995

Medical aspects of ageing in a population with intellectual disability: II. Hearing impairment.

Hearing function of an institutionalized population with intellectual disability, consisting of 70 subjects with a mean age of 70.1 (range 60-92) years at initial evaluation, was assessed during a 10-year longitudinal study. One subject had Down's syndrome and could not be assessed as a result of dementia. The total prevalence of mild to severe hearing loss (33.3% in the 60-70 age group and 70.4% in those over age 70) was comparable to reported data from an ageing population without intellectual disability in the United Kingdom (37%, respectively 60%). However, the proportion of moderate to severe losses might be higher (16.7% vs. 7% in the 60-70 age group and 33.3% vs. 18% in the older age group). Excess impairment was caused by severe congenital and childhood hearing impairment on one hand, and by conductive losses, probably caused by unrecognized chronic middle ear infections, superposed upon presbyacusis, on the other. Impacted ear wax was also a major problem. The incidence of new cases with hearing loss during follow-up was 50%. After individual habituation training hearing aids were used without difficulties by 20 out of 24 subjects. The importance of active screening and treatment of middle ear infections and hearing impairment from a young age onwards, and regular cleaning of the external ear canals is stressed.

Aged↗

PubMed1996

Vision care requirements among intellectually disabled adults: a residence-based pilot study.

Intellectually disabled adults have an high incidence of visual problems and they are often unable to communicate their visual difficulties. At Lennox Castle and Waverley Park Hospitals, vision care is through referral by medical and nursing staff to designated optometrists and ophthalmologists. This practice has provided a good service when visual difficulties are noticed. The vision care requirements of all residents had not been comprehensively assessed and a new interdisciplinary procedure developed at Waverley Park Hospital had drawn attention to the fact that only 11% had been offered vision assessment within the previous 5 years. In this study, 63 residents without specific referral received a comprehensive visual and medical assessment. The residents ranged from age 20 to 85 years and included the full range of disabilities. Objective assessments, ophthalmoscopy and retinoscopy were generally successful for all levels of disability. Visual acuity and visual fields were tested using methods suitable for nonverbal subjects. Success rates for these subjects were generally good, except in the profoundly disabled group where less than 30% were able to respond. A high prevalence of visual impairment, refractive error, squint and other ocular conditions was found. Visual impairment was most common in the severe and profoundly disabled groups because of optic nerve or cortical dysfunction. New spectacles were recommended for 23 residents (seven others had adequate correction). Nine residents were referred for ophthalmologic consultation, mainly for cataract. Three required monitoring for visual conditions. Thirty-one residents (49%) required no immediate action beyond documentation of the visual status. This study has shown a high prevalence of visual difficulties which were not previously detected. Routine biennial vision assessment of all residents is recommended to allow timely intervention to correct vision problems, and also to provide the necessary information about vision to plan appropriate programmes of activity.

Adult↗

PubMed1997

Classification, prevalence, prevention and rehabilitation of intellectual disability: an overview of research in the People's Republic of China.

The People's Republic of China is a developing country with all the problems and challenges that face such countries all over the world. Progress has been hampered by scarcity of resources, and a lack of relevant information and appropriate skills, as well as by the stigma traditionally attached to people with intellectual disability. The present rapid economic development has made possible further improvement and expansion of educational opportunities, and health and rehabilitation services. According to a recent census and sample surveys conducted in the People's Republic of China, the overall prevalence rate of people with disabilities was estimated to 4.9%. Thus, China has more individuals with disabilities than any other country in the world. According to these figures, the prevalence of intellectual disability in the population is approximately 1%. For children younger than 14 years of age, the prevalence is around 2%, which accounts for 66% of all handicapped children, making it the most frequent childhood disability. Today, the existing medical facilities, and educational and social welfare organizations cannot meet the tremendous need of care and services. The problems of the large number of disabled children and adults are a major challenge for contemporary Chinese society. This paper is devoted to research pertinent to intellectual disability in China. With a few exceptions, only publications in the English language were included in this review, which makes the overview selective rather than comprehensive. Publications on classification systems and diagnostic criteria, screening methods and assessment instruments, prevalence rates, aetiology and risk factors, prevention and intervention efforts, special education, and families with children with intellectual disability are presented.

Adaptation, Psychological↗

PubMedDate not supplied

The assessment of emotional distress experienced by people with an intellectual disability: a study of different methodologies.

The assessment of emotional disorders such as anger, depression and stress among people with an intellectual disability has traditionally used one of three methodologies: ratings by a significant other, a clinical interview or self-report. Despite the widespread use of all three methodologies, there is little research into their equivalence. This paper assesses the convergence among these three approaches for 147 people with a mild or moderate intellectual disability across the affective domains of anger, depression and stress. The results showed the overlap among the three methods to be consistently low, although limited convergence was found between self-report and clinical interview. Ratings by work supervisors discriminated least clearly between anger, depression and stress while self-report was the most discriminating between these three overlapping but conceptually distinct states. Suggestions are made for ongoing research into the methodologies of assessing affective states among people with an intellectual disability.

Adolescent↗

PubMed2025

Guidelines for the Creation of Accessible Consent Materials and Procedures: Lessons from Research with Autistic People and People with Intellectual Disability.

Informed, voluntary, ongoing consent is a central tenet of ethical research. However, consent processes are prone to exclusionary practices and inaccessibility. Consent materials are often too long and complex to foster understanding and ensure that people make truly informed decisions to participate in research. While this complexity is problematic for all people, these challenges are compounded for autistic people and people with intellectual disability. Consent materials and procedures rarely incorporate accommodations for processing and communication differences common in autism and intellectual disability. Failure to provide such accommodations ultimately threatens the conduct of ethical research. We describe lessons learned across multiple major U.S. research institutions that improved informed consent materials and procedures, with the goal of fostering responsible inclusion in research for autistic people and people with intellectual disability. We used these alternative materials and procedures in multiple research projects with samples of autistic people and people with intellectual disability. Each contributing team partnered with university human research participant protections personnel, accessibility experts, community members, and researchers to develop rigorous procedures for improving the readability and accessibility of informed consent materials. We present guidelines for designing consent materials and procedures and assert that participatory methods are vital to the success of ongoing accessibility initiatives. Adoption of understandable consent materials and accessible consent procedures can cultivate more equitable, respectful, and inclusive human research practices. Future work should expand on this work to design inclusive practices for populations with additional considerations.

autism↗

PubMed1999

Direct service staff and their perceptions of psychotropic medication in non-institutional settings for people with intellectual disability.

Previous studies have surveyed a variety of service providers in school and institutional settings, and reported a pervasive lack of education and training with regard to the use of psychotropic medication in people with intellectual disability. Because an increasing number of people with intellectual disability are living in the community and since many of these people receive psychotropic medications, the present study extended research in this area by surveying direct service staff to determine their perceptions, knowledge and opinions with regard to the use of psychotropic medication in non-institutional settings for individuals with developmental disabilities. Consistent with the findings of previous studies, a majority of the 334 respondents in the present study reported that they had not received adequate training in the area of drug treatment The knowledge and skills deficits of direct service staff appear to represent a significant barrier to the appropriate monitoring and management of pharmacotherapy for individuals with intellectual disability. Therefore, a systematic training programme to educate direct service staff about psychotropic medication needs to be designed, implemented and disseminated on a broad scale.

Attitude of Health Personnel↗

PubMed1998

Barbiturates in the treatment of epilepsy in people with intellectual disability.

Barbiturates are effective drugs in the treatment of epileptic disorder. The systemic side-effects are minimal. The main limiting factor is the presence of cognitive and behavioural problems. Relevant research is presented in this paper; however, it is somewhat difficult to extrapolate some of these experiences to a population of children and adults with intellectual disability and epilepsy. Recent reviews of this subject have suggested that, although the cognitive deficiencies seem to be a serious problem when phenobarbital is given in high doses, the problem is much less severe when the doses are on the low side. The most consistent findings with regard to behaviour are the exacerbation of behaviour disorders (mostly hyperactivity), as well as sleep disorders and depression in individuals who already have a predisposition to these disorders. However, the clinical experience of many professionals involved with the care of people with intellectual disability strongly suggests that barbiturates, and especially phenobarbital, produces intolerable side-effects at the point that the use of phenobarbital has been reduced to a minimum, and it is no longer considered a drug of choice. It is probably that the simultaneous presence of brain damage, epilepsy, intellectual disability and psychiatric disorders in people with intellectual disability is responsible for the high incidence of behaviour problems observed by clinicians.

Adult↗

PubMed1999

Characteristics of people with intellectual disability admitted for psychiatric inpatient treatment.

The present prospective study describes the demographic, medical and psychosocial characteristics of 40 people with intellectual disability who were referred for psychiatric inpatient treatment in the special psychiatric unit of the Special Welfare District of Southwest Finland. Three different control groups were used to study: (I) demographic variables (n = 122); (2) medical history (n = 39); and (3) psychosocial factors (n = 20). The symptoms leading to an admission to inpatient care and the connections of these clinical signs with the discharge diagnosis were evaluated. The typical inpatients were young males with mild intellectual disability, psychosis and a previous psychiatric diagnosis. They had lived in several places during their lives and their economic situation was poor. Affective and/or disruptive symptoms were the most common causes of an admission to inpatient care. The largest diagnostic group at discharge consisted of patients with psychotic disorders. The people with intellectual disability who were admitted for inpatient care formed a subgroup with certain psychiatric symptoms and social problems. Specialist psychiatric expertise is absolutely necessary for the treatment of this subgroup.

Adolescent↗

PubMed2001

Intellectual disability and the myth of the changeling myth.

This article investigates the historical sources for the idea of the "changeling" or substitute child as an explanation for congenital intellectual disability. Pre-modern sources for this idea are elite and theological as much as popular and folkloric, nor do they refer to intellectual disability in any sense recognizable to us. Rather, both the concept of intellectual disability and the notion of a transhistorical changeling myth emerge from the historical core of modern psychology.

Child↗

PubMed1997

The general practice care of people with intellectual disability: barriers and solutions.

A questionnaire exploring general practitioners' (GPs') perceptions of the barriers and solutions to providing health care to people with intellectual disability was sent to 912 randomly selected GPs throughout Australia. A response rate of 58% was obtained. Results indicated that numerous barriers compromise the quality of health care able to be provided to people with intellectual disability. Communication difficulties with patients and other health professionals, and problems in obtaining patient histories stood out as the two most significant barriers. A range of other barriers were identified, including GPs' lack of training and experience, patients' poor compliance with management plans, consultation time constraints, difficulties in problem determination, examination difficulties, poor continuity of care, and GPs' inadequate knowledge of the services and resources available. General practitioners also suggested numerous solutions to these barriers, and emphasized the need for increased opportunities for education and training in intellectual disability. The GPs showed an overwhelming willingness to be involved in further education. Other major solutions included increasing consultation duration or frequency, proactively involving families and carers in patients' ongoing health care, and increasing remuneration.

Adult↗