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Grieving related to development: a preliminary comparison of three age cohorts of parents of children with intellectual disability.

It is argued that a child with intellectual disability represents an ongoing source of loss and grief for parents. A developmental framework was employed to compare three age cohorts of parents. Grief was operationalized within the affective, behavioural and cognitive domains. Measures of intrusive thoughts, avoidance behaviours, current emotional distress over reminders of time of diagnosis of disability, and intensity of wishing for what might have been were used, collectively, to reflect the parents' grief reactions. As hypothesized, the results indicate no significant age-related differences in the responses of 58 parent dyads but significant gender-related differences. Mothers scored higher than fathers on all measures. However, on the Wishing Scale, there were no significant differences between fathers and mothers. It is concluded that grieving, as defined, is an ongoing feature of rearing a child with intellectual disability and is more intense for mothers than fathers. Results are discussed within the implications for research and practice, with particular reference to the merit of programmes and services which empower parents and strengthen bonds of partnership between parents and professionals.

Adolescent↗

Long-term follow-up of behavioural treatment for primary encopresis in people with intellectual disability in the community.

Encopresis is a major problem in high-dependency fields such as intellectual disability. Little information is available with respect to either the prevalence or aetiology of encopresis, probably because it is widely regarded as part and parcel of the handicapping condition. Consequently, treatment reports are rare and confined to a small number of case studies. There is a dearth of long-term follow-up on the behavioural treatment of encopresis in the general population, and no long-term follow-up studies are available for the treatment of encopresis in intellectual disability. The present report provides follow-up data for nine out of 10 people with mainly severe intellectual disability who had received behavioural treatment for primary retentive or non-retentive encopresis between 5 and 17 years previously. Six out of the nine subjects for whom data were available were accident-free and a further two clients were very substantially improved. Interestingly, those whose former encopresis was retentive in nature maintained more successfully, despite the severity of their original impaction. The limitations of the present study are discussed.

Adult↗

The moral status of intellectually disabled individuals.

The moral status accorded to an individual (or class of individuals) helps to account for the weight of the moral obligations considered due to an individual (or class of individuals). Strong arguments can be given to indicate that the moral status accorded, justly or unjustly, to individuals with intellectual disabilities is less than that accorded to those considered intellectually able. This paper suggests that such a view of the moral status of intellectually disabled individuals derives from individualism. Ontological and normative components of individualism are identified. It is shown that individualistic, ontological criteria for personhood compromise the integrity of "dependent" individuals. And it is shown that the normative component of individualism further compromises the integrity of intellectually disabled individuals. An alternative view of the self is outlined in which dependence features centrally. It is tentatively suggested that such a view of the self may prove more congenial to enhancing the moral status of individuals with intellectual disabilities.

Ego↗

Diagnosis of sensory impairment in people with intellectual disability in general practice.

The present authors have participated in the development of a Dutch consensus on the early detection, diagnosis and treatment of hearing and visual impairment in children and adults with intellectual disability. They argue that the early detection of sensory impairment in babies and children with intellectual disability should primarily be a responsibility of paediatricians and youth health physicians. General practitioners should be aware of the necessity of screening and should check whether this has been done when children visit the surgery. It is stressed that the general practitioner should play a more active role in the detection of age-related sensory loss in older adults with intellectual disability, and the assessment of younger adults whose sensory functions have never or incompletely been evaluated. Annual sensory screening is certainly not necessary, but annual otoscopy to detect impacted earwax or unidentified middle ear infection, as well as checks of the proper use of glasses and hearing aids, are suggested. Most adults with mild or moderate intellectual disability can be assessed with methods that are normally used by general practitioners. Uncooperative people should be referred for screening with specialized methods. A low-threshold referral system (e.g. via district expert teams) has been outlined.

Adolescent↗

'A woman's heaven is at her husband's feet'? The dilemmas for a community learning disability team posed by the arranged marriage of a Bangladeshi client with intellectual disability.

The present case report describes the arranged marriage of a Bangladeshi woman with moderate intellectual disability. It explores some of the social and cultural factors influencing the decision to arrange her marriage, and the dilemmas this presents in terms of bridging cultural differences between professional and lay concerns.

Adult↗

Effectiveness of antipsychotic medication in people with intellectual disability and schizophrenia: a systematic review.

The aim of the present study was to determine the efficacy of any antipsychotic medication for treating people with a dual diagnosis of intellectual disability and schizophrenia. The authors performed an electronic search of Biological Abstracts, the Cochrane Schizophrenia Group's Register of trials, the Cochrane Library, EMBASE, PsycLIT and MEDLINE. Unpublished data were sought from pharmaceutical companies. Both authors independently selected the relevant studies from the reports identified in this way. Only one relevant randomized trial was found by the searches (Foote 1958). This study included four people with a dual diagnosis of schizophrenia and intellectual disability, but results were only available for two subjects. The groups to which the other two people were allocated were unclear. Using the methods described, the reviewers found no trial evidence to guide the use of antipsychotic medication for those with both intellectual disability and schizophrenia. Until the urgent need for randomized controlled trials is met, clinical practice will continue to be guided by evidence from trials involving people with schizophrenia but without intellectual disability.

Antipsychotic Agents↗

Are people with intellectual disabilities just another customer? Interviews with business owners and staff.

Descriptive information on the views of business people towards the presence of persons with intellectual disabilities as customers was reported. We interviewed 89 individuals representing a range of shops and local amenities in four urban and four country regions in Queensland, Australia. We also systematically examined the influence of degree of intellectual disabilities by interviewing employees in shops near community residential facilities for persons with mild/moderate and those near facilities for persons with severe/profound intellectual disabilities. A third group of businesses not located near any such residential facilities served as a control group. Overall, results suggest that business people had few special concerns related to interactions with customers who have intellectual disabilities.

Adult↗

The organization of difference: people with intellectual disabilities and the social model of disability.

In this article I propose that the experience of people categorized as having intellectual disabilities is inadequately represented by current disability theory, premised, as much of it is, on the socially constructed duality between disability and impairment. I argue that representation of intellectual disability within the wider world of disability in general will only be achieved by thinking of disability on a continuum. This should preserve individual identities while reducing categorization and the attendant essentialist versus constructionist conflict. Debate can then move to a consideration of what methodologies are appropriate to the inquiry.

Persons with Disabilities↗

Factors associated with staff stress and work satisfaction in services for people with intellectual disability.

Staff stress and morale have been identified as major issues affecting the quality of services for people with intellectual disability. The present study investigates factors directly and indirectly associated with staff general distress, job strain and work satisfaction amongst staff in services for people with intellectual disability. As part of a large-scale survey of staff in services for people with intellectual disability, information was collected from 450 staff concerning general distress, job strain and work satisfaction, and a wide range of factors potentially associated with these outcomes. Path analyses revealed that three factors accounted for 28% of the variance in general distress scores: (I) wishful thinking, (2) stress linked to work-home conflict and (3) role ambiguity. Six factors accounted for 50% of the variance in job strain scores: (I) wishful thinking, (2) stress linked to a lack of staff support, (3) alienative commitment, (4) role ambiguity, (5) stressors linked to a low status job and (6) working longer contracted hours. Six factors accounted for 66% of the variance in work satisfaction scores: (I) stress linked to a low status job, (2) support from supervisors, (3) influence over work decisions, (4) alienative commitment, (5) support from colleagues and (6) older staff age. A range of factors indirectly associated with the three outcome measures was also identified. The models of general distress, job strain and work satisfaction empirically derived in the present study confirm and extend previous research in this area. The implications for organizations and future research are discussed.

Adult↗

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↗

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↗

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↗

[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↗

[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↗

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↗

Long-term treatment and management of violent tendencies of men with intellectual disabilities convicted of assault.

Success of anger management treatment with individuals who have intellectual disabilities convicted of assault-related offenses has not been verified. We employed a single case design with repeated measures with 6 such men. Recidivism is reported at least 4.5 years and up to 10 years. Modified anger management training incorporating cognitive restructuring and arousal reduction was employed. Participants showed no uniform reductions in emotional or behavioral systems of anger and aggression. Although several retained significant anger feelings, there were reductions in the extent to which they would act in an aggressive fashion. Five have not re-offended; 1 re-offended within 6 months but not in the subsequent 4 years. Anger management treatment seems effective for men with intellectual disabilities in the community who have committed socially and legally unacceptable acts.

Activities of Daily Living↗

Coping of parents with physically and/or intellectually disabled children.

OBJECTIVE: The aim was to clarify how families with physically and/or intellectually disabled children cope, what kind of coping strategies they use and how the families with good and poor coping capacities differ. METHODS: The parents of eight children (aged 8-10 years) with physical and/or intellectual disability were interviewed twice, and the data elicited in these interviews were analysed qualitatively using the grounded theory method. RESULTS: Information and acceptance, good family co-operation and social support were related to the coping strategies most frequently used. Half of the families seemed to have found successful ways of coping, whereas another half had major problems. There were five main domains in which the high- and low-coping families differed most from each other: (1) parents' initial experiences; (2) personal characteristics; (3) effects of the child's disability on family life; (4) acting in everyday life; and (5) social support. CONCLUSION: The findings can be utilized in developing supportive activities for families with disabled children. By recognizing the coping strategies used by the family, professionals and service providers can find the right ways to support their adaptation. As the role of physicians, nursing staff and other professionals in this process is very important, more attention should be attached to the collaboration between these groups, to enable them to view the situation from the perspective of the whole family.

Adaptation, Psychological↗

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↗