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Sterilisation of intellectually disabled women.

OBJECTIVE: To point out the proportion of intellectually disabled women (IDW) who are sterilised, and the medical and social factors associated with an increased probability to be sterilised. STUDY DESIGN: A population-based study among 97% of IDW aged 18-46, attending government-accredited institutions in the region of Brussels-Capital and the province of Walloon Brabant (Belgium). RESULTS: Among the IDW included in this study, 22.2% are sterilised, which is superior to the 7% in the general Belgian population. Factors associated with an increased probability to be sterilised are: living in an institution, having a higher intellectual quotient (IQ), being enrolled in an institution where sexual intercourse is authorised and attending an institution where contraception is required. The last three factors are significant only among women living in institutions and the last two, only in women with severe disability. Among IDW using contraception, no factor was associated with a greater probability to be sterilised. CONCLUSION: The prevalence of sterilisation among IDW is three times higher than that in the Belgian population and it is mainly correlated with factors related to the institution where these women live, especially the severely disabled.

Adolescent↗

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

Information about the mechanism of action and pharmacology of lamotrigine is summarized. A brief review of the literature on the use of this drug in people with intellectual disability is followed by a suggested framework for evaluating antiepileptic drugs in this population. The role of lamotrigine is systematically examined against the suggested framework. This leads to the conclusion that lamotrigine is a very favourable drug for treating epilepsy in people with intellectual disability because it has a broad spectrum of action, is effective in treating subtle seizures, shows no loss of effect with time, is not usually sedative, does not produce difficult-to-manage adverse effects, appears to have no direct adverse behavioural effects and is available in a range of 'patient friendly' preparations. However, it is important to use the drug wisely. This implies starting with low doses of lamotrigine and escalating the dose slowly to avoid adverse effects, especially rash, and being aware of drug interactions which could cause difficulty, including the prolongation of half-life with valproate, the pharmacodynamic interaction when it is added to carbamazepine and the pharmacokinetic interactions of lamotrigine with a number of antiepileptic drugs.

Anticonvulsants↗

Adherence to eating and drinking guidelines for adults with intellectual disabilities and dysphagia.

The extent to which 40 individuals with intellectual disabilities and dysphagia and their caregivers adhered to speech and language pathology dysphagia guidelines was evaluated. These individuals were observed having a meal across four settings. In addition to monitoring overall adherence, guidelines were split into separate sections corresponding to consistency modification of food and drinks, physical positioning, use of equipment and utensils, and support and prompting recommendations. Adherence to speech and language pathology recommendations was generally high, particularly regarding consistency modification that can help reduce the risks of aspiration and asphyxiation. Significant differences in adherence were found across settings, across type of guidelines, and between people who were fed by caregivers and those who fed themselves.

Adult↗

Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: report of an international panel of experts.

In this article a number of issues involving the concept of quality of life as applied to persons with intellectual disabilities are summarized, and a number of agreed-upon principles regarding its conceptualization, measurement, and application are presented. We realize that the concepts and models presented in this article will vary potentially from country to country, and even from area to area within countries. The cross-cultural understanding of the concept of quality of life is in its infancy, and we hope that the discourses resulting from the material presented in this article will facilitate both cross-cultural understanding and collaborative work. The article reflects current thought about the conceptualization, measurement, and application of this increasingly important and widely used concept in the field of intellectual disabilities and sets the stage for its continuing development.

Cross-Cultural Comparison↗

Detecting pain in people with an intellectual disability.

The assessment of pain in a person with an intellectual disability (ID) is often a difficult undertaking complicated by idiosyncratic reactions or vague descriptions. The person with an ID may also be unable to verbally communicate their discomfort. For the carer who knows the individual with an ID, knowing how they respond to painful stimuli assists the carer to detect new instances of pain. The emergency nurse is unlikely to have met the person with an ID and therefore detecting pain by observing behaviour or using self-report measures is unlikely to succeed. There have been some attempts to categorize behavioural responses to pain by people with an ID, however, they have not been developed into a useful assessment tool. Emergency nurses must therefore rely on the person who knows the person with an ID.

Communication Barriers↗

Preschool children with intellectual disability: syndrome specificity, behaviour problems, and maternal well-being.

BACKGROUND: Children with intellectual disability (ID) are at heightened risk for behaviour problems and diagnosed mental disorder. Likewise, mothers of children with ID are more stressed than mothers of typically developing children. Research on behavioural phenotypes suggests that different syndromes of ID may be associated with distinct child behavioural risks and maternal well-being risks. In the present study, maternal reports of child behaviour problems and maternal well-being were examined for syndrome-specific differences. METHODS: The present authors studied the early manifestation and continuity of syndrome-specific behaviour problems in 215 preschool children belonging to 5 groups (typically developing, undifferentiated developmental delays, Down syndrome, autism, cerebral palsy) as well as the relation of syndrome group to maternal well-being. RESULTS: At age 3, children with autism and cerebral palsy showed the highest levels of behaviour problems, and children with Down syndrome and typically developing children showed the lowest levels. Mothers of children with autism reported more parenting stress than all other groups. These syndrome-specific patterns of behaviour and maternal stress were stable across ages 3, 4 and 5 years, except for relative increases in behaviour problems and maternal stress in the Down syndrome and cerebral palsy groups. Child syndrome contributed to maternal stress even after accounting for differences in behaviour problems and cognitive level. CONCLUSIONS: These results, although based on small syndrome groups, suggest that phenotypic expressions of behaviour problems are manifested as early as age 3. These behavioural differences were paralleled by differences in maternal stress, such that mothers of children with autism are at elevated risk for high stress. In addition, there appear to be other unexamined characteristics of these syndromes, beyond behaviour problems, which also contribute to maternal stress.

Adult↗

Verbal working memory in children with mild intellectual disabilities.

BACKGROUND: Previous research into working memory of individuals with intellectual disabilities (ID) has established clear deficits. The current study examined working memory in children with mild ID (IQ 55-85) within the framework of the Baddeley model, fractionating working memory into a central executive and two slave systems, the phonological loop and visuo-spatial sketchpad. METHOD: Working memory was investigated in three groups: 50 children with mild ID (mean age 15 years 3 months), 25 chronological age-matched control children (mean age 15 years 3 months) and 25 mental age-matched control children (mean age 10 years 10 months). The groups were given multiple assessments of the phonological-loop and central-executive components. RESULTS: The results showed that the children with mild ID had an intact automatic rehearsal, but performed poorly on phonological-loop capacity and central-executive tests when compared with children matched for chronological age, while there were only minimal differences relative to the performance of the children matched for mental age. CONCLUSIONS: This overall pattern of results is consistent with a developmental delay account of mild ID. The finding of a phonological-loop capacity deficit has important implications for the remedial training of children with mild ID.

Adolescent↗

[Two cases of toluene embryopathy with severe motor and intellectual disabilities syndrome].

We reported two patients with severe motor and intellectual disabilities syndrome, who were born to mothers having inhaled organic solvents during pregnancy. They had microcephaly, cerebral palsy, mental retardation, seizures, growth failure and minor craniofacial anomalies, variable growth deficiency including a small midface, narrow bifrontal diameter, low-set ears, thin upper lips and micrognathia. Patient 1, a male, died at 8 years and 8 months. The autopsy of his brain revealed marked cerebral atrophy and destruction of bilateral temporal lobes with ventricular enlargements. Microscopic examination revealed migration disorders with polymicrogria at the remaining cerebrum and the cerebellum as well as very thin white matter. Much hemosiderin was found around ventricles, suggesting recurrent minimal bleedings which led to more brain atrophy. Patient 2, a 5 months old male infant, had infantile spasms. On CT and MRI, he had bilateral temporal lobe defect, which might be due to the infarction of bilateral middle cerebral arteries at the prenatal period. These clinical findings are similar to those of other embryopathies, caused by alcohol, phenytoin and other agents. Hersh et al. reported five cases of toluene embryopathy in 1985 and 1988, but they did not report such central nervous system abnormalities. The pathogenesis of toluene embryopathy remains to be solved, but our cases suggested the possible teratogenesis of toluene.

Abnormalities, Drug-Induced↗

Consistent mapping and automatic visual search: comparing persons with and without intellectual disability.

BACKGROUND: Merrill et al. (1996) reported that persons with intellectual disability (ID) were slower at learning a visual search task to automaticity relative to persons of the same age without ID. For persons without ID, automaticity develops most rapidly under conditions in which a response is always the same for a particular stimulus. This study was designed to investigate whether persons with and without ID are differentially sensitive to the influence of consistently mapped versus inconsistently mapped stimulus responses. METHODS: The primary manipulation was the consistency between a particular stimulus and the response to that stimulus in a visual search task. Sixteen participants with ID and 16 without ID searched displays of two, three, or four pictured objects to determine if a target was present. For half of the participants, the targets were always targets. For the other half, the targets became nontargets on 25% of the trials. RESULTS: Analyses focused on changes in response times associated with set size. Because automaticity allows for parallel processing, the elimination of significant effects of set size was taken as an index of the development of automaticity. Results indicated that inconsistent mapping significantly slowed the development of automaticity for the participants without ID but not for the participants with ID. DISCUSSION: Results were discussed in terms of the role of inhibition processes in the development of automatic search and detection. The effectiveness of inhibition processes was compromised by the consistency manipulation. The effect of the consistency manipulation was greater for the participants without ID because they were presumed to be using inhibition processes more effectively during practice than did the participants with ID.

Adolescent↗

[Videofluorographic study of swallowing in patients with severe motor and intellectual disabilities--II. Impairment of oral phase].

We studied swallowing movements in 14 patients with severe motor and intellectual disabilities and development of the impaired oral phase. The oral phase in the patients did not develop beyond the late weaning phase. They had impairment of the oral phase: poor or absent lip seal, infantile swallowing, slowed or stalled bolus transit, and oral residue after swallowing. Videofluorographic studies revealed severe impairment in the transitional and pharyngeal phases: pooling of liquid barium in the hypopharynx prior to swallowing, the delay of cricopharyngeal relaxation, aspirated liquids (silent aspiration 77.8%), aspirated purees, pooling of purees in the pharynx after swallowing. After videofluorographic studies we made some efforts to provide patients with better management; changes in food textures and posture during drinking and eating. These efforts eased their feeding difficulties. Videofluorographic studies could be helpful in evaluating swallowing disturbance in the oral phase and thereby preventing chronic aspiration, malnutrition and feeding difficulties in patients with severe motor and intellectual disabilities.

Adolescent↗

[Pleural effusion associated with long-term dantrolene administration in three patients with severe motor and intellectual disabilities].

Chronic unilateral pleural effusion developed in three patients with severe motor and intellectual disabilities. All patients received 5-15 years of dantrolene administration for their spasticity. The cause of pleural effusion was indistinct, despite close investigations for etiologies such as infection or tumor. The pleural fluid consisted of sterile exudate in all patients. One patient had eosinophilia in his pleural fluid, while peripheral blood eosinophilia was seen in the other two. The pleural biopsy and autopsy specimens revealed only non-specific inflammatory findings. After dantrolene therapy was discontinued, pleural effusion almost disappeared in two patients in the following several months, but the other died of multi-organ failure from another underlying disease. It is important to take chemical pleurisy into consideration when dealing with pleural effusion of unknown etiology. Moreover, respiratory side effect should be examined in patients treated with chronic dantrolene administration.

Adult↗

Hidden psychiatric morbidity in a vocational programme for people with intellectual disability.

The aim of the present study was to assess the point-prevalence of psychiatric disorders according to DSM-III-R criteria and the hidden morbidity in individuals with intellectual disability working in a vocational setting. The present study was carried out in a vocational centre in Southern Spain which is considered to be a model for social integration. One hundred and thirty workers with intellectual disability were interviewed by two experienced clinicians using the Assessment and Information Rating Profile, DSM-III-R criteria, and the General Assessment of Functioning and Clinical Global Impression scales. The point-prevalence of psychiatric morbidity, hidden morbidity and treatment adequacy were estimated. Morbidity was hidden (i.e. not previously diagnosed) in 50% of psychiatric cases. Forty-two (32.3%) subjects had a psychiatric diagnosis with the following distribution: schizophrenia (17.7%), other psychotic disorders (9.23%), mood disorders (4.61%), adaptive disorders (2.31%), anxiety disorders (1.54%) and other psychiatric disorders (6.15%). Treatment was judged inadequate in 30% of subjects. The point-prevalence of psychiatric problems in a vocational setting in Spain was similar to that found in other environments. Hidden morbidity was similar to that found in primary care. The present study highlights the need for standardized instruments for psychiatric assessment in non-clinical settings as well as specific training in this area.

Adolescent↗

Lionel Sharples Penrose (1898-1972): aspects of the man and his works, with particular reference to his undertakings in the fields of intellectual disability and mental disorder.

The Penrose Club, named after Professor L. S. Penrose, is a society of academic psychiatrists in the UK with a particular focus on research in the sphere of intellectual disability. The inaugural lecture of the Club was delivered at the Institute of Psychiatry, London, on 29 November 1996. It is distinctly fitting that this lecture should appear in print in the Journal of Intellectual Disability Research in the centenary year of Professor Penrose's birth, both because of his major pioneering contributions to the field with which JIDR is concerned and because he played a crucial role in the founding of the Journal.

Female↗

Psychotropic drug use in intellectually disabled group-home residents with behavioural problems.

Little is known about psychiatric and behavioural factors associated with psychotropic drug use and how appropriately these drugs are prescribed in settings for people with intellectual disabilities. The aim of this study was to measure the point prevalence of psychotropic drug use in a problem-behaviour group (PBG) consisting of intellectually disabled residents of group homes compared to a random group (RG), and to gain insight in possible factors that are associated with group membership. From all group homes in the Netherlands, 573 problematic residents were selected by the staff (one resident from each home) and 1479 residents were randomly sampled from all of the homes. Mental health problems were measured using the Reiss Screen for Maladaptive Behaviour and the Psychopathology Instrument for Mentally Retarded Adults. The response rate in the PBG was 68.9 % and in the RG 71.7 %. Psychotropics (excluding anticonvulsants) were used by 52.6 % of the PBG and by 22.8 % of the RG. Young age, psychotic, anxiety, and aggression symptoms were significantly associated with the PBG, as was the use of antipsychotics and antidepressants. The PBG more often used multiple (three or more) drugs (17.3 %) than the RG (7.3 %). A low prevalence of antidepressants or mood stabilisers, antipsychotics, and anxiolytics was found in residents with affective, psychotic, or anxiety symptoms. We conclude that psychotropic drug use in the PBG compared to the RG was high. It is likely that the group-home staff finds it difficult to deal with young people with socially disruptive behaviour, which is underlined by our finding of high prevalence of antipsychotics and multiple-drug therapy in the PBG. Finally, our findings suggest that a considerable number of residents with psychiatric or behavioural symptoms are undertreated.

Adolescent↗

Increases in knowledge following a course of sex education for people with intellectual disabilities.

Although sex education programmes are thought to be useful in teaching people with intellectual disabilities, there is very little evidence that the material taught is retained by clients. This paper reports data which has been collected routinely on a sex education programme. Forty-six subjects were assessed on their level of sexual knowledge in seven areas: parts of the body, masturbation, male puberty, female puberty, intercourse, pregnancy and childbirth, and birth control and venereal disease. They were retested after a 9-month sex education programme and tested again at a 3-month follow-up. A control group of 14 subjects were tested on two occasions, 4 months apart. There were significant and substantial increases in sexual knowledge on all areas for the experimental group. The control group showed no corresponding increases in knowledge.

Adolescent↗

The offence process of sex offenders with intellectual disabilities: a qualitative study.

There have been few attempts to build a model of sexual offending for men with intellectual disabilities and hence clarify appropriate intervention. This study examines any commonalities that characterize the offence process of such men. Using a grounded theory approach, qualitative interviews with sex offenders with intellectual disabilities are analyzed to generate a model of the offence process. Data from qualitative interviews with clinicians is used to triangulate offender participants' data. The subsequent model highlights the importance of individual's attitudes and beliefs and the impact that they have at all stages of the offence process. It raises issues concerning the variation in the process that is seen within and between offences. Additionally, it identifies a marked lack of awareness of any "decency insult" in these offenders, an inability to empathize with society's view of sex offending. A clear implication is that thorough assessment and formulation are likely to be the key to successful and appropriate intervention.

Adult↗

Using goal attainment scaling to evaluate a needs-led exercise programme for people with severe and profound intellectual disabilities.

The aim of this study was to evaluate whether involvement in a 16 week exercise programme improved goal attainment in areas of behaviour, access to community-based experiences, health and physical competence. Participants were women with severe intellectual disability and associated challenging behaviour (setting A,N = 14) and male/female service users with profound physical and intellectual disabilities (setting B,N = 8). The exercise programme included active and passive exercise, walking, swimming, hydrotherapy, team games and rebound therapy. Significant gains in aggregated goal attainment were demonstrated by week 16. The reliability and validity of our goal attainment procedures were demonstrated with inter-rater reliabilities exceeding 80 percent. Changes in goal attainment were concurrent with global clinical impression scores in a series of single case studies. Continuing care settings should dedicate care staff to provide routinized, continuing exercise programmes.

Exercise↗

Environmental characteristics of nursing homes and community-based settings, and the well-being of adults with intellectual disability.

The present study examined whether characteristics of the environment of nursing homes and community-based residential settings are associated with the adaptive behaviour, health and community integration of adults with intellectual disability living in those settings. The specific characteristics of the environment were type of facility, size, level of residential involvement in policy-making, and the degree of variety and stimulation of the physical environment. The study assessed 249 residents with intellectual disability over a 3-year period who lived in nursing homes at baseline. At follow-up, 50 of the residents had moved to community-based facilities while 199 of the residents remained in nursing homes. The results indicated that type, size and characteristics of the environment were related to the level of adaptive behaviour and community integration at follow-up. Residents living in community-based settings had better health and greater levels of community integration than residents living in nursing homes. Residents living in smaller facilities had greater adaptive behaviour at follow-up than residents living in larger facilities. More variety and stimulation in the residential physical environment was associated with greater adaptive behaviour among residents at follow-up. Residential facilities that permitted greater resident involvement in policy-making, and had greater variety and stimulation in their physical environment were associated with greater levels of community integration among their residents at follow-up.

Adaptation, Psychological↗