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PubMed2000

Needs for oral care among people with intellectual disability not in contact with Community Dental Services.

Previous research has found an unmet need for oral care among people with intellectual disability. The key factors which have been indicated are low expectations, fear of treatment, lack of awareness among carers and problems in accessing dental services. The withdrawal of many general dental practitioners (GDPs) from the National Health Service (NHS) may have exacerbated the latter problem in the UK. The aims of the present study were: (1) to assess the extent of unmet clinical needs in a group of adults with intellectual disability living in the community who were not in contact with the Community Dental Service (CDS); and (2) to explore their perceptions of teeth and contact with dentists to identify how oral care can be improved. Interviews were completed with subjects and/or carers and a dental examination was completed. There were higher levels of untreated caries (decay), and gingival or periodontal (gum) problems among the sample than in either the general population, or in a previous survey of CDS users at day centres and residential facilities. The subjects were largely unaware of dental problems, and used the appearance and absence of pain to judge the condition of their teeth. They depended greatly on their carers for decision-making and support with regard to visiting the dentist and tooth-brushing. Carers requested training in oral care and the use of dental services, and support in dealing with clients who have problems tolerating tooth-brushing. The subjects had experienced a wide variation in the treatment provided by dentists, but had not found it difficult to access a dentist despite recent reductions in the availability of NHS dental care. They expressed a particular need for a good relationship with their dentist and for their dentist to have personal skills in relating to people with an intellectual disability. Dental screening checks and oral care training for carers should be made easily available. Care plans should include tooth-brushing and dietary issues for all clients who have their own natural teeth. There are significant training issues for dentists in developing personal skills in total communication, disability awareness and attitudes which value people with intellectual disability.

Adult↗

PubMed2005

Introduction to theme section on geographies of intellectual disability: 'outside the participatory mainstream'?

This paper introduces the following theme section on Geographies of Intellectual Disability. It outlines the historiography of geographical work on intellectual disability, noting in particular the contributions of Wolpert (Transactions of the Institute of British Geographers 5 (1980) 391) and Hall and Kearns (Health and Place 7 (2001) 237), before tracing claims made about both the 'institutional' and 'deinstitutional' eras in the changing geographies confronting and experienced by intellectually disabled people. This account, highlighting the tendency for such people to remain 'outside the participatory mainstream' in almost all circumstances, offers along the way an introduction to the four contributions that follow.

Deinstitutionalization↗

PubMed1998

The Rorschach Egocentricity Index in subjects with intellectual disability: a study on the incidence of different psychological pathologies.

The aims of the present research were to assess the level of self-concern in people with intellectual disability using the Rorschach Egocentricity Index, to correlate the Index with other Rorschach and IQ variables, and to study the effect of associated psychological pathology. The Rorschach Inkblot Test and the Wechsler Intelligence Scale were administered to a group of 75 subjects with intellectual disability, aged between 18 and 38 years, who were divided into subgroups according to their additional diagnosis (i.e. personality disorders, psychosis and depression). A fourth subgroup was composed of people with intellectual disability but without other pathologies. The Egocentricity Index was very low in the subjects with intellectual disability and differences were a result of the effects of additional psychological pathologies. The meaning of the measurement of egocentricity in people with intellectual disability is discussed.

Adolescent↗

PubMed1997

Sexual abuse perpetrated by men with intellectual disabilities: a comparative study.

This paper compares cases of sexual abuse of adults with intellectual disabilities, reported across the South East of England, which were perpetrated by men with intellectual disabilities, with those committed by other male perpetrators. The comparison provides some support for the findings of other studies, which have suggested that men with intellectual disabilities offend against more male victims than non-disabled sex offenders and that their offences are somewhat less serious, but otherwise indicates common patterns of abusive behaviour across this divide but differential service responses and support for victims. So called 'peer abuse' is a widespread problem which service agencies have failed to address: repeated offences are frequent and lack of appropriate intervention is the norm.

Adult↗

PubMed2004

[Usefulness of flexible bronchoscopy for aspiration of foods into the tracheobronchial trees in 2 patients with severe motor and intellectual disabilities].

Two patients with severe motor and intellectual disabilities who suffered from acute asphyxia and respiratory failure due to aspiration of foods into the tracheobronchial trees were reported. Numerous food particles were found in the tracheobronchial trees of both the patients. One patient showed recurrent atelectasis at various sites. After oral intubation, flexible bronchoscopy could successfully remove food particles from the tracheobronchial trees in both the patients without any complications. A rigid bronchoscope is usually recommended for removal of foreign bodies from the airways in children. However, it is difficult to use in patients with severe motor and intellectual disabilities, because their airway may show deformation or the aspirated foods may enter the peripheral bronchi. Our cases suggest that flexible bronchoscopy can be useful for removing foreign bodies from the tracheobronchial trees in neurologically handicapped patients for whom rigid bronchoscopy can not be applied.

Acute Disease↗

PubMed2006

Epilepsy, intellectual disability, and living environment: a critical review.

Epilepsy occurs at a higher incidence and is more prevalent in people with an intellectual disability than in the general population. Nonetheless, we have insufficient knowledge of the extra needs of people with epilepsy and intellectual disability, of their families, and of the living environment. The lack of information about specific needs of the living environment may, in particular, be important. A Medline search revealed that scant attention has been paid to the specific needs for patients with epilepsy and intellectual disability, and only a few studies have focused specifically on this topic. The majority of studies have been focused on medical treatment issues and the organization and availability of health and social services. There is an indication that people with epilepsy and intellectual disability lack skills training appropriate to their intellectual potential. And although several reviews have emphasized the need for information on living environment and quality of life, we did not find such studies in our search.

Anticonvulsants↗

PubMed2003

Psychopathology in people with epilepsy and intellectual disability; an investigation of potential explanatory variables.

OBJECTIVES: There are few studies on epilepsy and psychopathology in people with intellectual disability (mental retardation) despite epilepsy prevalence rates that are thirty times higher than in the general population. The aims of this study, therefore, were to identify reliable, epilepsy-specific predictors of psychiatric and behavioural disorder in these patients, and to investigate reliable predictors of carer stress. METHODS: A database of 685 patients was compiled, from which 250 were randomly selected. Structured interviews were completed on 186 of these 250 patients (74%) (108 men, 78 women; mean age (SD) 35.5 (10.1)) comprising descriptive, clinical and functional components, and validated measures of psychopathology for which comparative data were available. Logistic and linear regression methods were used to identify predictors. RESULTS: One-third of patients with epilepsy and intellectual disability met criteria for possible psychiatric disorder, particularly affective/neurotic disorder; twice the comparison rates for intellectual disability alone. Behavioural problem levels, however, were lower than population norms. Regression models explaining modest amounts of variance (R(2)< or =24%) suggested certain seizure phenomena (greater seizure severity, more seizures in past month, lesser tendency to loss of consciousness during seizures) as particular risk factors for psychiatric disorder. General disability factors such as level of intellectual, sensory or motor disability and side effects of medication, however, contributed more to explaining behavioural problems. Around half of the family carers reported significant stress, and one-third exhibited clinically significant anxiety symptoms. Younger carers were more stressed, and side effects from patients' medication also contributed to carer stress. CONCLUSIONS: Although epilepsy in itself may be a risk factor for psychopathology in a minority of people with intellectual disability, some epilepsy-specific factors may predict psychiatric disorder. Behavioural problems need to be considered separately from psychiatric disorder because general factors, more closely associated with disability, are stronger predictors of their occurrence.

Adolescent↗

PubMed2001

[Fatal stenosis of trachea and main bronchus due to compression by the spine and sternum in three patients with severe motor and intellectual disabilities].

Three patients with severe motor and intellectual disabilities developed fatal respiratory insufficiencies caused by stenosis of the trachea and main bronchus due to compression by the spine and trachea. The onset of respiratory insufficiency was by 20, 16, and 29 years of age. Chest computed tomography demonstrated deformation and narrowing of the trachea and main bronchus, and shortening of the distance between spine and sternum. Although respiratory insufficiency was temporarily relieved by insertion of a stent into the main bronchus in patient 1, he died at the age of 21 due to proliferation of granulation tissue. Patient 2 died of bleeding from the granulation tissue around the window of tracheotomy at the age of 18 years, and patient 3 died of recurrent pneumonia at the age of 34 years. In conclusion, stenosis of the trachea and bronchus observed in these patients was caused by progressive deformation of the thorax. The stenosis may result in sudden death or recurrent respiratory infections in patients with severe motor and intellectual disabilities.

Adolescent↗

PubMed2005

Association of sociodemographic characteristics of children with intellectual disability in Western Australia.

The social determinants of intellectual disability (ID) are poorly understood, particularly in Australia. This study has investigated sociodemographic correlates of ID of unknown cause in Western Australian born children. Using record linkage to the Western Australian Maternal & Child Health Research Database, maternal sociodemographic characteristics of children with ID (of unknown cause) born between 1983 and 1992 (n = 2871) were compared with those of children without ID (n = 236,964). Socioeconomic indices for areas based on the census district of mother's residence were also included in the analysis. Aboriginal mothers (OR = 2.83 [CI: 2.52, 3.18]), teenagers (OR = 2.09 [CI: 1.82, 2.40]) and single mothers (OR = 2.18 [CI: 1.97, 2.42]) were all at increased risk of having a child with mild or moderate ID. Children of mothers in the most socioeconomically disadvantaged 10% had more than five times the risk of mild and moderate ID compared with those in the least disadvantaged 10% (OR = 5.61 [CI: 4.42, 7.12]). Fourth or later born children were also at increased risk (OR = 1.82 [CI: 1.63, 2.02]). The results of the study have implications both for further aetiological investigation as well as service provision for children with ID. Furthermore, many of the sociodemographic correlates identified in this study, particularly in the mild/moderate category of ID, are potentially modifiable, opening up opportunities for primary prevention.

Adolescent↗

PubMed2006

Gender dysphoria and cross-dressing in people with intellectual disability: a literature review.

In clinical practice, we have come across people with intellectual disability who have gender dysphoria and cross-dress. Here, we review the literature on this subject and present an illustrative case example. We searched databases, followed-up references from relevant articles, and contacted colleagues in the field. We found nine papers with case examples and one survey. Gender identity problems certainly occur in people with intellectual disabilities, and developmental perspectives are important in assessing and treating them. In some cases autistic spectrum disorder was co-morbid, for individuals with and those without intellectual disability. Aggression was also common. Documented treatments were primarily psychological and social and did not include hormones and sex reassignment surgery. Capacity to consent is a factor that determines treatment.

Female↗

PubMed2001

Visual impairment in adult people with moderate, severe, and profound intellectual disability.

PURPOSE: To assess visual impairment in adults with intellectual disability after de-institutionalisation. PATIENTS: The county has a population of 385 483 persons of 18 years and older; 961 were moderately, severely or profoundly intellectually impaired (ID), 837 of them (87 %) participated in the investigation. METHODS: Visual acuity, VA: Østerberg picture charts and reduced copies for near vision could be used in 71% of the patients. Teller preferential looking procedure was applied to people who were unable to cooperate with the picture charts. When examined with picture wall chart VA 0.3-> or =0.10) was found in 10.8%, severe low vision in 1.2% (VA <0.10-> or =0.05), and blindness (VA<0.05) in 3.8%. Poor near vision (<0.3) was present in 19%. Those assessed with Teller acuity cards had poorer vision than the others. It is possible that the low values of assessment with Teller cards represent a combination of gnostic and resolution deficiencies, which means that the results of grating VA and recognition VA are non-comparable. Ophthalmic disorders: The most widespread medical condition was cerebral visual impairment, the most frequent eye disorders were optic atrophy, high myopia, cataract, and keratoconus. Refraction: Refraction was assessed in 710 persons (85%), the most prevalent cause of visual impairment was uncorrected ametropia. Hypermetropia of >+1.50 was found in 151 of 710 subjects (21%), and spectacles were used by 106 (15%); myopia <-1.0 was present in 213 individuals (30%), 95 persons (13%) had lenses <-1.0. CONCLUSION: Resettled adult people with intellectual disability have a high prevalence of treatable visual impairment. A structured scheme of referral to optometric and ophthalmological care is essential if these people are to be given the care to which they are entitled.

Adult↗

PubMed2006

Exploring the self-concepts of persons with intellectual disabilities.

This study explores the self-concepts of Hong Kong Chinese with intellectual disabilities. Face-to-face and individual interviews were conducted in Cantonese, using the Chinese version of the Adult Source of Self-Esteem Inventory (ASSEI) together with three open-ended questions to explore the participants' self-conceptions in different life domains. An opportunity sample of 135 young adults with intellectual disabilities was interviewed. The findings showed that the family self, the social self and achievement in school and work were the self-concept attributes most important to the participants. The participants of this study had a higher total self-concept than that of a comparison group of people without disabilities when the participants used the in-group social comparison to maintain positive self-perception. The importance of partnership with family, self-concept enhancement strategies and quality employment service are discussed in order to facilitate people with intellectual disabilities to develop more positive self-concepts and thus achieve better community integration.

Adolescent↗

PubMed1999

Alcohol problems and intellectual disability.

The present paper discusses some of the difficulties in working with people with an intellectual disability and an alcohol problem, and draws on the sparse literature about alcohol problems in people with intellectual disability. Four individuals drawn from the current clinical case loads of medical practitioners in UK community intellectual disability services are described. Some suggestions for staff training, patient education and health promotion, and therapeutic approaches are made.

Adult↗

PubMed2003

Temporal changes in incidence and prevalence of intellectual disability between two birth cohorts in Northern Finland.

We followed two separate, genetically homogeneous cohorts of children born in 1966 (n = 11,965) and 1985-1986 (n = 9,432) in Northern Finland to determine temporal changes in the incidence and prevalence of subcategories of intellectual disability within the same geographic area. The children were followed up to the age of 11.5 years. Similar study design, data ascertainment methods, and definition of intellectual disability were used. There was no change in the total incidence (12.62/1,000 in each) or in total prevalence (11.03/1,000 vs. 11.23/1,000) of intellectual disability. However, in the subcategories of intellectual disability, there was a shift from severe and moderate towards mild; whereas profound intellectual disability remained at the same level. The temporal changes followed generally similar patterns by gender.

Adolescent↗

PubMed2026

What Constitutes Effective Support and Provision Within Day Service Centres for People With Intellectual Disabilities? A Systematic Review of Qualitative Research.

BACKGROUND: This review aimed to investigate the effectiveness and quality of support and provision within day service centres for people with intellectual disabilities. METHOD: The International Bibliography of the Social Sciences, Scopus and PsycInfo databases were searched in August 2024, and the results were reported according to the PRISMA guidelines. Peer-reviewed, English-language, qualitative studies that investigated the effectiveness of day service provision for people with intellectual disabilities in non-residential settings were considered for review. Methodological quality of the included studies was assessed using the JBI Critical Appraisal Tool for qualitative research. Qualitative themes were identified through thematic analysis and synthesised using the ConQual approach. RESULTS: Fourteen studies were included and four key themes emerged: 'perceptions of service quality'; 'community-orientation, integration, and empowerment'; 'challenging behaviours and safety'; and 'staff-centred factors and job satisfaction'. Confidence in the evidence was 'very low' for 3/4 themes, while there was 'moderate' confidence in the evidence related to the theme 'perceptions of service quality'. CONCLUSIONS: Day service centres for people with intellectual disabilities may enhance their effectiveness and quality of provision by concentrating on promoting communication, engagement, relationships, social networks and community integration. Addressing the methodological shortcomings and incomplete reporting of related research in future would contribute to improvements in overall confidence in the evidence base. This can then be better used to inform and further enhance day service provision for people with intellectual disabilities.

Humans↗

PubMed2005

Prevalence of visual impairment in adults with intellectual disabilities in the Netherlands: cross-sectional study.

PURPOSE: To obtain the first representative and valid population-based prevalence figures on visual impairment and blindness in adults with intellectual disabilities (ID) and to identify risk groups. METHODS STUDY DESIGN: Cross-sectional survey. An age-Down's syndrome-stratified random sample of 1,598 persons from a base population of 9,012 adult users of ID services with mild to profound intellectual disabilities was screened. Participants underwent protocollised on-site screening of visual functions. Results were related to degree of ID, occurrence of Down's syndrome (DS) and age. MAIN OUTCOME MEASURE: Prevalences of visual impairment and blindness in the study population and in subgroups and weighted prevalences in the total Dutch population using ID services. RESULTS: Prevalences of visual impairment ranged from 2.2% (95% confidence interval (CI), 0.5-6.4) in young adults with mild ID and no Down's syndrome to 66.7% (95% CI, 41.0-86.7) in older adults with profound ID and Down's syndrome; prevalences of blindness ranged from 0.7% (95% CI, 0.1-4.1) to 38.9% (95% CI, 28.1-50.3). Weighted prevalences of visual impairment and blindness in the total Dutch population of adult users of intellectual disability services are 13.8% (95% CI, 9.3-18.4) and 5.0% (95% CI, 3.8-6.2), respectively. Prior to this study, visual impairment or blindness had remained undiagnosed in 106/261 (40.6%) persons. CONCLUSIONS: As compared to published figures for the general Dutch population aged 55 years and over (visual impairment 1.4%, blindness 0.5%), prevalences of visual impairment and blindness are higher in all subgroups with intellectual disabilities, including the young and mildly handicapped group. The diagnosis is too often missed. All persons with severe or profound intellectual disabilities, and all older adults with Down's syndrome, should be considered visually impaired until proved otherwise.

Adult↗

PubMed2006

Stressors of parents of children with epilepsy and intellectual disability.

Past research suggested that parents of children who have both epilepsy and intellectual disability are at risk for increased stress, but the specific causes of stress have not been studied. Descriptions of the specific stressors are needed before effective interventions can be designed. The purpose of this study was to identify and explore these sources of stress. We invited parents of children with a diagnosis of both epilepsy and mild intellectual disability (i.e., estimated IQ of 55-75) to participate in one open-ended interview that was tape recorded and transcribed verbatim. Data analyses revealed five categories of sources of stress: concern about the child, communication with healthcare providers, changes in family relationships, interactions with the school, and support within the community. This study is a first step in developing a more thorough understanding of sources of stress for parents of children with epilepsy and intellectual disability. The identification of stressors provided a foundation for an assessment checklist and suggested avenues for future intervention.

Adolescent↗

PubMed1998

Omeprazole: therapy of choice in intellectually disabled children.

OBJECTIVE: To study extensively the therapeutic approach of gastroesophageal reflux disease in intellectually disabled children. DESIGN: We studied the effect of omeprazole sodium on healing and symptom relief in 52 institutionalized intellectually disabled children (male-female, 21:31; mean age, 15.4 years; range, 4-19 years). INTERVENTION: Endoscopically proven esophagitis (grades I-IV, Savary-Miller classification) was treated with omeprazole sodium, 40 mg/d (20 mg/d for children weighing <20 kg) as healing dose for 3 months, and 20 mg/d (10 mg/d for children weighing <20 kg) as maintenance dose for another 3 months. After 3 and 6 months, results of treatment were evaluated using symptom scoring and/or endoscopy. For patients with relapse, the dose was increased. RESULTS: At first endoscopy, 19 patients (36%) of 52 showed grade I esophagitis; 20 (38%), grade II; 6 (12%), grade III; and 7 (13%), grade IV. In 44 (86%) of 51 patients, treatment was effective in healing esophagitis and keeping patients in remission, independent of the severity of esophagitis. In 7 patients (14%), a symptomatic relapse was observed after decreasing the dose. However, these patients became symptom free again after increasing the dose and showed healing on endoscopy at the end of the study. One child did not finish the study for reasons not related to therapy. Marked improvement of persistent vomiting, regurgitation, food refusal, iron deficiency anemia, and signs of depression was seen at the end. CONCLUSIONS: Omeprazole is highly effective for all grades of esophagitis in intellectually disabled children, without adverse effects. The dose needed to maintain the remission can be titrated according to the reflux symptoms. One disadvantage of medical therapy is that it is open ended, in contrast to operation, but surgery in this population has high mortality and complication rates.

Adolescent↗