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PubMed2002

Health characteristics and health services utilization in older adults with intellectual disability living in community residences.

BACKGROUND: The health status and health needs of adults with intellectual disability (ID) change with advancing age, and are often accompanied by difficulties with vision, hearing, mobility, stamina and some mental processes. AIM: The present study collected health status information on a large cohort of adults with ID aged > or = 40 years living in small group, community-based residences in two representative areas of New York State, USA. METHOD: Adult group home residents with ID aged between 40 and 79 years (n = 1371) were surveyed to determine their health status and patterns of morbidity. RESULTS: Most subjects were characterized as being in good health. The frequency of cardiovascular, musculoskeletal and respiratory conditions, and sensory impairments increased with age, while neurological, endocrine and dermatological diseases did not. Psychiatric and behavioural disorders declined with increasing age, at least through 70 years of age. Although most conditions increased with age, their frequency varied by sex and level of ID. Frequencies of age-related organ system morbidity were compared to data from the National Health and Nutrition Evaluation Survey III. It was found that adults with ID had a lower overall reported frequency of cardiovascular risk factors, including hypertension and hyperlipidaemia, and adult-onset diabetes. Inconsistencies with mortality data among older adults with ID were observed (which showed equal if not greater prevalence of deaths as a result of cardiovascular disease and cancer). CONCLUSION: These results suggest that either a cohort effect is operating (i.e. contemporary populations are healthier than previous populations), or that there may be under-recognition of select risk factors and diseases.

Adult↗

PubMed2001

Prevalence of visual and hearing impairment in a Dutch institutionalized population with intellectual disability.

A screening of hearing and visual function was performed using clinical assessment methods in a Dutch institutionalized population of 672 people with mild to profound intellectual disability (ID). Because the studied population was not comparable to the total Dutch population with ID, subgroups were distinguished according to level of ID, age younger and older than 50 years, and the presence or absence of Down's syndrome (DS). The prevalences of both hearing and visual impairment were considerably increased in all subgroups, as compared with the general population. In the least affected group, i.e. those < 50 years with a mild or moderate ID by other causes than DS, the prevalences of hearing and visual impairment were 21% and 4%, respectively (as opposed to 2-7% and 0.2-1.9% in the general Dutch population <50 years, respectively). The prevalence of hearing impairment showed a sharp and highly significant increase in individuals with DS and subjects > or = 50 years. To a lesser extent, young adults with severe or profound ID had an increased risk of hearing impairment. Visual impairment and blindness were specifically highly prevalent in people with severe or profound ID (51% < 50 years of age). Down's syndrome and an age > or = 50 years were also significant risk factors for visual impairment. There was an alarmingly high prevalence of combined sensory impairment, especially in those with severe or profound ID (20%). Although hearing impairment had been diagnosed prior to this screen in 138 people and visual impairment in 65 individuals, a first diagnosis of hearing impairment was made in 128 subjects and of visual impairment in 90 cases. This highlights the tendency for sensory impairments to go unnoticed in people with ID, which is not restricted to those with severe or profound ID. Therefore, the present authors stress the importance of regular screening as outlined in the existing IASSID international consensus statement.

Adolescent↗

PubMed2002

Contrast sensitivity of patients with severe motor and intellectual disabilities and cerebral visual impairment.

We attempt to evaluate the residual visual capacities of nine patients (seven males and two females; age range 4 to 35 years, mean 13.8 +/- 9.98) with cerebral visual impairment coupled with severe motor and intellectual disabilities by their contrast sensitivities to sine-wave gratings. Two methods were used for detecting the occurrence of ocular responses to stimuli: (1) detection of optokinetic nystagmus to drifting sinusoidal gratings by naked-eye observation and electronystagmography and (2) detection of ocular pursuit for a drifting Gabor patch by naked-eye observation. We succeeded in measuring the sensitivities of eight cases. For the remaining one case, only the Gabor method could be applied. Most cases showed low contrast sensitivity in both higher (2 and 4 cycles/degree) and lower (0.125 and 0.25 cycles/degree) spatial frequencies and relatively high contrast sensitivity in the middle (0.5 and 1 cycle/degree) range of spatial frequencies. We conclude that the residual visual capacities of patients with severe motor and intellectual disabilities and cerebral visual impairment can be measured fairly accurately by these behavioral methods.

Adolescent↗

PubMed2004

Effects of Helicobacter pylori eradication among adults with intellectual disability.

BACKGROUND: Compared to the general population, Helicobacter pylori infection is more common among adults with intellectual disability (ID) and is associated with greater levels of disability, maladaptive behaviour, and institutionalization. Little information exists about the effects of eradication therapy in this group, so we aimed to evaluate: (1) success of a standard H. pylori eradication protocol; (2) frequency of side-effects; and (3) impact of eradication on level of functional ability and maladaptive behaviour. METHOD: A cohort of adults with ID underwent assessment of their levels of function and maladaptive behaviour, medical history, physical examination, and H. pylori testing using serology and faecal antigen tests. Some received standard H. pylori eradication therapy. Twelve months later, participants underwent repeat assessment, were grouped by change in H. pylori status and compared. RESULTS: Of 168 participants, 117 (70%) were currently infected with H. pylori at baseline, and 96 (82%) of the 117 were given standard H. pylori eradication therapy. The overall eradication rate was 61% but 31% reported side-effects. Institutional status of the participants, their level of behaviour or function, and number of comorbid medical conditions were not associated with failure of eradication. There were no statistically significant differences in level of behaviour or function, ferritin, or weight between the groups in whom H. pylori was eradicated or stayed positive. CONCLUSION: Adults with ID have lower H. pylori eradication and higher side-effect rates than the general population. Levels of maladaptive behaviour and disability did not improve with eradication and thus greater levels of maladaptive behaviour or disability appear to be risk factors for, rather than consequences of, H. pylori infection.

Adult↗

PubMed2005

A cross-sectional study of the characteristics and determinants of emergency care utilization among people with intellectual disabilities in Taiwan.

AIMS: The purpose of this study was to identify health characteristics of people with intellectual disabilities (ID) and to assess the use of emergency care facilities by these people and factors affecting this utilization. METHOD: A cross-sectional study was employed. Subjects were recruited from the Taiwan National Disability Registration System. A total of 1071 people registered with ID in Taiwan were recruited for this study in 2001. Data were collected via a structured mail-out questionnaire that was completed by the main carers of people with ID. RESULTS: Most of the carers subjectively characterized the overall health status of people with ID as good-excellent. However, people with ID carry a burden of diseases greater than that of the general population. Nearly half (47.7%) of the subjects reported having an illness in the past 7 months. Most of the morbidity was associated with neurological, psychiatric, digestive, dermatological and cardiovascular diseases or disorders. One-third of subjects took medication regularly and 15% were 'Major Illness' card beneficiaries of the Taiwan National Health Insurance scheme. About two-thirds of individuals with ID were classified as having multiple disabilities and 24.5% needed to be provided with frequent rehabilitative therapies to maintain their normal daily functions. Respondents indicated that 18.4% of the subjects had used emergency care in the past 7 months. A stepwise logistic regression model highlighted that the following need factors were significantly related to the utilization of emergency care: having an illness (OR=2.1, 95% CI=1.2-3.6), taking medicine regularly (OR=1.8, 95% CI=1.1-2.9) and self-reported health status (poor health: OR=9.9, 95% CI=2.1-45.7; bad health: OR=8.2, 95% CI=1.3-49.8). CONCLUSIONS: To ensure that people with ID minimize their utilization of emergency care, it is necessary to establish in appropriate community systems to monitor individuals with ID with poor health status, diseases and who take medicine regularly.

Adolescent↗

PubMed2005

Is Post-Traumatic Stress Disorder a helpful concept for adults with intellectual disability?

BACKGROUND: Research using the concept of Post-Traumatic Stress Disorder (PTSD) with adults with intellectual disability (ID)assumes they perceive and react to traumatic events in a similar way to non-disabled adults. Reactions to trauma displayed by children may be relevant to adults with ID as well. METHODS: Two focus groups were held with professionals and practitioners to explore the relevance of criteria from child as well as adult literature to adults with ID who experience trauma. Descriptive thematic analysis was carried out. RESULTS: Abuse, parental bereavement, and having children removed were considered common sources of trauma. Similarities identified between disabled and non-disabled adults were flashbacks and nightmares; distressed by reminders; avoidance; hypervigilance and increased arousal. Differences were the frequent occurrence of multiple rather than single events, which were considered significant in generating chronic problems similar to those described as PTSD; also the occurrence of physical health problems and behavioural re-enactments. DISCUSSION AND CONCLUSIONS: Experienced professionals and practitioners considered most of the ideas from PTSD research with non-disabled adults to be relevant to adults with ID who experience trauma, but that some behaviour reported in research with children was also relevant. Topics and questions for use in clinical and research practice with individuals who have experienced trauma were proposed.

Diagnostic and Statistical Manual of Mental Disord↗

PubMed1997

An unobtrusive system for helping a person with blindness and intellectual disability travel in indoor areas.

A system causing no environmental disturbance was employed for helping a woman with blindness and intellectual disability travel in indoor areas. The system provided encouragement and praise while the woman moved in the correct direction and a buzzer sound in the case of incorrect direction through earpieces. The results showed that the woman learned to use the system and traveled successfully.

Acoustic Stimulation↗

PubMed1997

Prevalence study of the randomized controlled trials in the Journal of Intellectual Disability Research: 1957-1994.

Systematic reviews of care are increasingly potent guides to clinical practice, and it is important that all relevant randomized controlled trials (RCTs) are identified by those within the speciality of learning disability who produce such works. All RCTs in the Journal of Intellectual Disability Research and its predecessor were identified by hand-searching (1957-1994), and the frequency, origin, intervention and quality of reporting of randomization were described. Electronic searches for the trials were undertaken for the years 1974-1994, and the quality of indexing was inspected and tested. These electronic searches were then compared to a 'gold standard' search. Fifty-six RCTs were identified. None contained the world 'randomized' in the title and only nine mentioned it in the abstract. Out of the 37 RCTs published between 1974 and 1994, 36 are in PsycLIT and 37 in MEDLINE. One MEDLINE record contained the wrong abstract. The methodological phrases used in the electronic records were poor, and thus, the precision of electronic searches, using both databases, was low. This international journal contains many relevant RCTs from around the world, involving several types of interventions. Unfortunately, these trials cannot be readily accessed electronically using methodological phrases designed to find RCTs. Improved quality of indexing would facilitate identification of RCTs and their dissemination.

Cross-Sectional Studies↗

PubMed2005

A measure of subjective burden for dementia care: the Caregiving Difficulty Scale--Intellectual Disability.

BACKGROUND: It has been suggested in the literature on family caregiving for persons with Alzheimer's dementia (AD) that levels of objective and subjective burden among carers often predict institutionalization of the persons with AD. There is a paucity of measures to assess whether perceived burden among formal caregivers may also predict movement to more restrictive settings for persons with intellectual disabilities (ID) and AD. This study focused upon the development of a measure of subjective burden, The Caregiving Difficulty Scale - Intellectual Disability (CDS-ID) as a first step in addressing this measurement deficit. METHODS: An existing caregiver subjective burden scale, the Caregiving Hassles Scale (CHS) was adapted for use with 203 staff caregivers of persons with ID and AD. Preliminary testing of existing CHS items and proposed new items was carried out in two countries, Ireland and the USA. Confirmatory factor analysis with the existing items and exploratory factor analysis with existing and proposed new items for the scale was used to establish the content and test the psychometric properties of a revised scale, the CDS-ID. RESULTS: On the existing CHS items, staff carers appeared to experience greater subjective burden than has been reported for family caregivers. However, the psychometric properties of the CHS found with this population were poor. Factor analysis produced a revised scale, the CDS-ID with three subscales with Cronbach alphas ranging from 0.75 to 0.93 and 38 items overall. CONCLUSIONS: This new scale when used with objective burden and other scales offers an opportunity to more systematically measure the difficulties staff experience when caring for persons with ID who present with symptoms of AD.

Adult↗

PubMed2004

[Assessment of social networks between developmental physicians and welfare facilities/specialists for children with intellectual disabilities in Japan].

The social networks between Japanese child neurologists and welfare facilities/specialists for children with mental retardation (MR) were assessed. A total of 113 physicians answered our mail-in questionnaire. Most of the doctors had various connections with nursery homes for children with MR or severe motor and intellectual disabilities (SMID) and with public health centers, and often collaborated with teachers of schools and kindergartens. On the other hand, most physicians had little relation with residential and vocational facilities for adults with MR, and with specialists in residential or community care. There was a statistical correlation between the number of facilities or collaborated specialists and the number of persons seen by each physician; however, the physicians' experience and affiliations had no relation. In view of 'social participation', physicians who usually see children with developmental disorders can play an important role in decision making of their life-style with their families.

Child↗

PubMed2001

Bullying and people with severe intellectual disability.

Although bullying has been shown to reduce quality of life in many spheres, anti-bullying strategies have yet to be incorporated into services for adults with severe intellectual disability (ID). The present study employed a survey of staff and parent concerns about 54 previously surveyed students who had left a school for pupils with severe ID. A content analysis of follow-up interviews was performed in 10 cases. Staff identified 19% of the survey sample as bullying others and 11% as being picked on. Neither gender nor communication ability had an impact. There was no significant change in bully or victim status over time, although some people did change. Parents or staff raised bully/victim problems in more than half of the interviews. There is sufficient evidence of bullying behaviour to warrant the adoption of anti-bullying strategies.

Adult↗

PubMed2002

Getting personal: an exploratory study of intimate and personal care provision for people with profound and multiple intellectual disabilities.

Intimate and personal care is a major area of support and provision for people with intellectual disability (ID), particularly those with profound and multiple ID. However, its management and practice has largely been neglected outside the use of individual guidelines and same-gender intimate care policies, with little research evidence or theoretical literature to inform the planning, conduct and organization of associated care tasks. The present paper reports on the methodology and findings of an exploratory study designed to map the key management and practice issues, and suggest ways forward for the providers of services for people with ID in relation to the quality and outcomes of intimate and personal care.

Female↗

PubMed1990

The effect of differential reinforcement of incompatible behaviors (DRI) on pica for cigarettes in persons with intellectual disability.

The effect of Differential Reinforcement of Incompatible Behaviors (DRI) on pica for cigarettes in two intellectually disabled adults was studied using an A-B-A-B treatment design; in addition, the efficacy of using placebo pica stimuli (bread "cigarette butts") was evaluated. Both subjects received 10 15-minute sessions of baseline followed by 10 sessions of DRI, with a reversal to baseline and a repeat of the DRI treatment. Results support the efficacy of DRI with pica, as well as the use of placebo pica stimuli. Generalization was conducted with one of the subjects; results indicate that treatment effects were present when implemented by several ward personnel. The implications of the results for future research were discussed.

Adult↗

PubMed2006

The barriers to social inclusion as perceived by people with intellectual disabilities.

Very little research has been done on social inclusion from the perspective of people with intellectual disabilities, including perceived barriers and remedies. Focus groups were held with 68 persons, mostly tenants in supported living or shared group homes. Qualitative data were obtained using a mix of workshop activities and small group discussions. Four main barriers were identified: lack of necessary knowledge and skills; role of support staff and service managers; location of house; and community factors such as lack of amenities and attitudes. Participants were able to identify a range of solutions for these barriers. Most of their proposals were in line with the aims of current government policy and good practice. These findings reinforce the contribution individuals could make to the planning of local services for themselves and others. This advocacy has been an essential element in reducing the social isolation of other marginalized groups.

Adult↗

PubMed2002

Intellectual disability amongst people on probation: prevalence and outcome.

BACKGROUND: Previous research has suggested that people with intellectual disability (ID) can be found in the criminal justice system. However, little is currently known about those supervised in the community on probation orders. METHODS: Ninety people on probation in south-east England were screened using the Learning Disabilities in the Probation Service (LIPS) screening tool, which was designed to be used by probation officers to identify those with possible ID. The LIPS incorporates two measures of cognitive functioning: (1) the Quick Test (QT); and (2) the Clock Drawing Test (CDT). RESULTS: Seven per cent of participants were found to have QT IQs and CDT scores 1.6 SD below the mean. When compared to those who appeared to be functioning within the normal range, those with possible ID were found to be significantly younger. However, no differences were found between the two groups in terms of the final outcome of the probation order. CONCLUSIONS: It seems likely that the probation service contains a significant minority of people with ID. Despite the fact that no difference was found to exist in terms of outcome, people with ID or borderline ID are likely to have a number of support needs which could affect the success of their time on probation.

Adult↗

PubMed2005

Virtual reality in the rehabilitation of people with intellectual disabilities: review.

Virtual reality (VR) possesses many qualities that give it rehabilitative potential for people with intellectual disabilities, both as an intervention and an assessment. It can provide a safe setting in which to practice skills that might carry too many risks in the real world. Unlike human tutors, computers are infinitely patient and consistent. Virtual worlds can be manipulated in ways the real world cannot be and can convey concepts without the use of language or other symbol systems. Published applications for this client group have all been as rehabilitative interventions. These are described in three groups: promoting skills for independent living, enhancing cognitive performance, and improving social skills. Five groups of studies are reviewed that utilize virtual technology to promote skills for independent living: grocery shopping, preparing food, orientation, road safety, and manufacturing skills. Fears that skills or habits learnt in a virtual setting would not transfer to the real world setting have not been supported by the available evidence, apart from those studies with people with autistic spectrum disorders. Future directions are in the development of more applications for independent living skills, exploring interventions for promoting motor and cognitive skills, and the developments of ecologically valid forms of assessment.

Activities of Daily Living↗

PubMed2006

Quality of life for people with intellectual disabilities.

PURPOSE OF REVIEW: As the quality of life for the mental health of people with intellectual disabilities has been identified as a comprehensive indicator of intervention efficacy, scientific interest around it is shifting from theoretical issues to the ways of measurement. Nevertheless, the daily assessment still awaits the addressing of the questions of what the essence of quality of life is, how it is really or effectively measurable, by whom and for what purpose it is done. RECENT FINDINGS: The point well agreed upon is that the measurement should be based on both qualitative and quantitative variables from both subjective and objective positions. It should also be conducted through a comprehensive system that includes auto and hetero evaluations (if possible both by proxies and other external persons). Current instruments of assessment are too different from each other and refer to different levels of evaluation. This results in inappropriate applications to the assessment and care procedures. SUMMARY: A need for more methodologically rigorous studies exists, which is tracked in terms of applicability to daily practice and content effectiveness. At both health policy and front-line staff levels, assessment should aim at mobilizing and revaluing resources that can help a person to embark on or to continue a life-span curriculum of life skills.

Family↗

PubMed2001

Hyponatremia during carbamazepine therapy in patients with intellectual disability.

Carbamazepine is an anticonvulsant and psychotropic medication commonly used in the treatment of people with intellectual disability (ID). The incidence of hyponatremia during treatment in this population is unclear. The present study aimed to determine the prevalence of hyponatremia during carbamazepine treatment in patients with ID, and to investigate the risk factors and clinical features of this condition. The prevalence of hyponatremia was retrospectively assessed in 53 people receiving carbamazepine (subject group) and 64 people not receiving carbamazepine (control group) who lived in a residential centre for people with ID. The relationship between serum sodium level, sex, age, daily carbamazepine dose and serum carbamazepine levels was examined. The prevalence of the clinical features of hyponatremia was assessed in this population using a checklist. The prevalence of hyponatremia was 41.5% and 9.4% in the subject and control groups, respectively. The mean serum sodium level in the subject group was significantly lower than that in the control group. Hyponatremia correlates significantly with a high daily carbamazepine dose and a high serum carbamazepine level. The checklist of clinical features was not useful in detecting hyponatremia clinically. Hyponatremia is a common occurrence in this population. In the light of the uncertain significance of mild, chronic hyponatremia, the value of routine monitoring of serum electrolytes has yet to be established.

Adolescent↗