Participation in daytime activities among people with mild or moderate intellectual disability

Background Community participation has been defined as performing daytime activities by people while interacting with others. Previous studies on community participation among people with intellectual disability (ID) have mainly focused on the domestic life aspect. This study investigates the variation in community participation in the domains work, social contacts and leisure activities among people with ID in the Netherlands. A number of categories of people with ID were distinguished by: (1) gender; (2) age; (3) type of education; (4) severity of ID; and (5) accommodation type. Methods Data were gathered on 653 people with mild or moderate ID, of whom 513 by oral interviews and 140 by structured questionnaires filled in by representatives of those who could not be interviewed. Pearson chi‐square tests were used to test differences between categories of people with ID in the distributions of the participation variables. Additional logistic regression analyses were conducted to correct for differences between the categories in other variables. Results Most people with mild or moderate ID in the Netherlands have work or other daytime activities, have social contacts and have leisure activities. However, people aged 50 years and over and people with moderate ID participate less in these domains than those under 50 years and people with mild ID. Moreover, people with ID hardly participate in activities with people without ID. Conclusion High participation among people with a mild or moderate ID within the domains of work, social contact and leisure activities does not necessarily indicate a high level of interaction with the community, because the majority hardly interact with people without ID. Furthermore, older people with ID and people with a more severe level of ID seem to be more at risk for social exclusion.     

People with mild to moderate intellectual disability talking about their diabetes and how they manage

Background The prevalence of diabetes is relatively high in people with intellectual disability (ID). However, little is known about how people with ID experience having diabetes and how they manage the condition. Method Seventeen people with mild to moderate ID who have diabetes were interviewed. A framework on illness perceptions having an influence on diabetes self‐management was used as a basis for the interviews and for the qualitative analysis. Results Diabetes is associated with feelings of loss with regard to food intake and choices, and with being controlled. Most respondents did not feel ill. Information about diabetes for people with ID is lacking, but they do have questions. Family members with diabetes often serve as a role model. Diabetes self‐management is impeded by a lack of information, motivation and support, few opportunities for learning, and by health factors, mood and living accommodation. Communication between health professionals and people with ID about diabetes rarely takes place. Conclusions Developing diabetes information together with the people concerned is an important step towards engagement in self‐management activities. At the same time, the professional staff in living arrangements should stimulate and support the development of self‐management skills in people with diabetes, by providing opportunities to learn and develop. Therefore, the professional staff also need skills and information to be able to support people with ID in building the skills and confidence they need to lead active and fulfilling lives, despite having diabetes.     

The Center for Epidemiologic Studies Depression Scale: factor validity and reliability in a French sample of adolescents with Intellectual Disability

The purpose of this study was to test the factor validity and reliability of the Center for Epidemiologic Studies Depression Scale (CES-D) within a sample of adolescents with mild to moderate Intellectual Disability (ID). A total sample of 189 adolescents (121 boys and 68 girls), aged between 12 and 18 years old, with mild to moderate ID were involved in two studies. In study 1, the content, phrasing and answering format of the CES-D were adapted for adolescents with ID. This instrument was renamed CES-D for ID (CES-D-ID) and two different versions based on two alternative answer scales (Likert and Likert-graphical) were developed and their psychometric properties were verified in study 2. The results provided support for the factor validity, reliability and invariance across gender and age of a 14-item version of the CES-D-ID based on a Likert-graphical answer scale.     

A validity study of the Working Group's Orientation Test for individuals with moderate to severe intellectual disability

Background   Decline in orientation skill has been reported as an early indicator of Dementia of Alzheimer's Type (DAT). Orientation subtest of the Working Group's Test Battery was examined whether this test is useful to identify DAT patients among adults with moderate to severe ID.
Methods   Sixteen DAT patients and 35 non-demented normal controls with moderate to severe ID were followed for a year using Orientation Test. The scores on the baseline evaluation and the longitudinal changes over a 1-year period among the DAT patients and the normal controls were compared. The effects of age and etiologies of ID on the performance of Orientation were also examined.
Results   The DAT group's score was significantly poorer than that of the normal control group on the baseline evaluation. The score changes over the 1-year period were not significantly different between the groups. However, there was a considerable overlap between the score distributions of the two groups. The effects of age and etiologies of ID on the performance of Orientation were not significant.
Conclusions   Screening DAT patients based only on the score of the Orientation Test of the Working Group's Test Battery may produce a large number of diagnostic errors.     

The relationship between Axis I psychopathology and quality of life in adults with mild to moderate intellectual disability

Individuals with intellectual disability are at risk for impaired quality of life (QOL) compared to the general population. Little is known, however, about factors that may affect QOL in those with intellectual disability. The current study examined the role that Axis I psychopathology plays in the QOL of 138 adults with moderate to borderline intellectual disability. Scores on the Quality of Life Questionnaire (QOL-Q) were compared between those with a Psychotic Disorder, those with a Mood/Anxiety Disorder, and those with no Axis I diagnosis. Additionally, the effects of number of Axis I diagnoses was explored. Those with no Axis I diagnosis were found to have significantly higher QOL-Q scores than those in either diagnostic group. No significant differences were found between the two diagnostic groups. Additionally, those with no Axis I diagnosis were found to have significantly higher QOL-Q scores than those presenting with two or more Axis I diagnoses. The results and their implications are discussed.     

Effectiveness of treatment programmes for depression among adults with mild/moderate intellectual disability

Background The current study describes the development and evaluation of group treatment programme for people with mild/moderate intellectual disability (ID). Methods A total of 34 participants (16 males, 18 females) completed the treatment programme and 15 participants (six males, nine females) comprised a control group. Results Compared to the control group, the intervention group showed an improvement in levels of depression, positive feelings about the self, and lower levels of automatic negative thoughts after the intervention. These changes were maintained at 3‐month follow‐up. Conclusions These results demonstrate that intervention programmes are effective for the treatment of depression among people with ID.     

A validity study of the Working Group's Autobiographical Memory Test for individuals with moderate to severe intellectual disability

The purpose of the present study was to investigate the validity of the Working Group's Autobiographical Memory Test as a dementia screening tool for individuals with moderate to severe intellectual disabilities (ID). Twenty-one participants with Dementia of Alzheimer's Type (DAT) and moderate to severe ID and 42 controls with similar levels of ID were tested. The majority were re-tested one year after the initial evaluation. The DAT group scored considerably lower than the control group on the initial evaluation. The controls with DS exhibited a considerable decline on the follow-up evaluation whereas other participants exhibited little changes. This demonstrates an insignificant overall difference between the DAT group and the control group on the follow-up evaluation. Virtually all participants exhibited the same scores on 3 out of 6 test items and the percentage of participants who correctly answered the remaining three test items were not significantly different from the DAT or control groups. In conclusion, the Working Group's Autobiographical Memory Test may be useful as a dementia screening tool for individuals with moderate to severe ID from DS when validated with a large sample size study. However, it is questionable whether this test is a reliable dementia screening tool for individuals with moderate to severe ID from non-DS etiologies. This test has a significant psychometric weakness because of the restricted score variability among the participants.     

Early detection of depression and associated risk factors in adults with mild/moderate intellectual disability

The aim of this study was to determine the presentation and risk factors for depression in adults with mild/moderate intellectual disability (ID). A sample of 151 adults (83 males and 68 females) participated in a semi-structured interview. According to results on the Beck Depression Inventory II, 39.1% of participants evinced symptoms of depression (2 severe, 14 moderate, and 43 mild). Sadness, self-criticism, loss of energy, crying, and tiredness appeared to be the most frequent indicators of depression or risk for depression. A significant difference was found between individuals with and without symptoms of depression on levels of automatic negative thoughts, downward social comparison and self-esteem. Automatic negative thoughts, quality and frequency of social support, self-esteem, and disruptive life events significantly predicted depression scores in people with mild/moderate ID, accounting for 58.1% of the variance.     

Construct validity of the Chinese version of the Chalder Fatigue Scale in a Chinese community sample

Objective

This paper aims to evaluate the factorial validity of the Chinese version of the Chalder Fatigue Scale (ChCFS) using a Chinese community sample.

Methods

A total of 201 Chinese adults completed the ChCFS, the 12-item Short-Form Health Survey (SF12), and the Hospital Anxiety and Depression Scale (HADS). Confirmatory factor analysis was conducted to assess the fit of a one-factor model, a two-factor correlated model, and a three-factor hierarchical model in both the 14-item and 11-item versions of ChCFS to the current data.

Results

ChCFS successfully replicated the original two-factor structure in the current Chinese community sample, and the 11-item version demonstrated better data-model fit than the 14-item version. The instrument possessed good internal consistency (Cronbach's α=.863). The convergent validity with HADS and divergent validity with SF12 were also evident.

Conclusions

ChCFS is valid and reliable among Chinese adults in the general population.     

Prevalence and characteristics of psychotropic drug use in institutionalized children and adolescents with mild intellectual disability

Psychotropic drugs are a cornerstone in the treatment of psychopathology and/or behavioral problems in children with intellectual disability (ID), despite concerns about efficacy and safety. Studies on the prevalence of psychotropic drug use have mainly been focused on adults with ID or children without ID. Therefore the aim of this cross sectional study was to assess the prevalence and characteristics of psychotropic drug use in children with mild ID who were institutionalized in specialized inpatient treatment facilities in The Netherlands. Demographic data, psychiatric diagnoses, the nature of the behavioral problems, level of intellectual functioning, and medication data were extracted from medical records using a standardized data collection form. Adjusted relative risks (ARR) for the association between patient characteristics and psychotropic drug use were estimated with Cox regression analysis. Of the 472 included children, 29.4% (n = 139) used any psychotropic drug, of which 15.3% (n = 72) used antipsychotics (mainly risperidone), and 14.8% (n = 70) used psychostimulants (mainly methylphenidate). Age, sex, and behavioral problems were associated with psychotropic drug use. Boys had a 1.7 (95%CI 1.1–2.4) higher probability of using psychotropic drugs, compared to girls adjusted for age and behavioral problems. Having any behavioral problem was associated with psychotropic drug use with an ARR of 2.1 (95%CI 1.3–3.3), adjusted for sex and age. The high prevalence of psychotropic drug use in children with ID is worrisome because of the lack of evidence of effectiveness (especially for behavioral problems) at this young age, and the potential of adverse drug reactions.     

Reliability and validity of the Swedish Fatigue Assessment Scale when self-administrered by persons with mild to moderate stroke

Objective: To examine internal consistency, test-retest reliability, floor/ceiling effects and construct validity of the Fatigue Assessment Scale (FAS), when self-administrated by persons with mild to moderate stroke.

Method: The FAS was translated into Swedish and tested for psychometric properties when self-administrated by persons with mild to moderate stroke. Participants, consequently selected from the stroke unit admission register received a letter with three questionnaires: the FAS, Short Form Health Survey (SF-36) subscale for vitality and Geriatric Depression Scale, GDS-15. Within two weeks, a second letter with FAS was sent for re-test.

Result: Seventy-tree persons with mild to moderate stroke participated in the study. Internal consistency was good (Cronbach’s alpha 0.82). The test and retest reliability of individual items showed that five items out of 10 items were good (weighted kappa > 0.60), four were moderate (0.40-0.60), and one was fair (0.22). The relative reliability between total scores was good (ICC _3.1 = 0.73) and the absolute reliability was nine points, meaning that a change of at least nine points in total score implies a real change of fatigue level. Correlation analysis showed that the Swedish FAS correlated with the SF-36 subscale for vitality (r_s = - 0.73) and GDS-15 (r_s = 0.62), suggesting convergent construct validity. There were no floor or ceiling effects.

Conclusion: The Swedish translation of the FAS used as a self-administrated questionnaire is reliable and valid for measuring fatigue in persons with mild to moderate stroke.     

Mortality in adults with moderate to profound intellectual disability: a population-based study

Background People with intellectual disability (ID) experience a variety of health inequalities compared with the general population including higher mortality rates. This is the first UK population‐based study to measure the extent of excess mortality in people with ID compared with the general population. Method Indirectly standardized all‐cause and disease mortality ratios (SMRs) and exact Poisson confidence intervals were calculated by age and sex for all adults, aged 20 years or over, with moderate to profound ID living in Leicestershire and Rutland, UK, between 1993 and 2005. The general population of Leicestershire and Rutland, which has a population of approximately 700 000 individuals in this age range, was used for comparison. To explore differences within the study population, overall SMRs were also calculated by presence of Down syndrome and last place of residence (city or county). Results Of 2436 adults identified, 409 (17%) died during 23 000 person‐years of follow‐up. Both all‐cause and disease‐specific mortality were around three times higher than the general population but varied considerably with age. The largest differences were observed in people in their twenties, where all‐cause mortality was almost nine times higher in men (SMR = 883; 95% CI = 560–1325) and more than 17 times higher in women (SMR = 1722; 95% CI = 964–2840). At a particular disadvantage were people with Down syndrome and women with ID living in the city. Conclusions The relatively high SMRs observed in young people and in women, particularly those living in inner city areas and with Down syndrome, deserve further investigation for possible explanations, including socio‐economic factors.     

Homosexuality among people with a mild intellectual disability: an explorative study on the lived experiences of homosexual people in the Netherlands with a mild intellectual disability

Background Empirical research on homosexuality among people with an intellectual disability (ID) is limited and, to date, very little is known regarding the personal experiences of gay and lesbian people with an ID. This study set out to answer the question: What are the lived experiences of a specific cohort of homosexual people with an intellectual disability living in the Netherlands? Method To answer this question, a qualitative study was performed in which 21 people with a mild ID were interviewed via semi‐structured interviews. In this study, 19 participants were men and two were women (average age = 40.5 years). Results Participants reported positive and negative experiences, and talked about their gay or lesbian identity. Almost half of the participants (n = 10) reported that they had experienced sexual abuse including partner violence (n = 6). Additionally, they indicated that there was a lack of support for homosexual people with an ID. Conclusion Specific problems impact the lives of homosexual people with ID, namely the high prevalence of negative sexual experiences, the lack of support, training and sex education, and their search for a suitable partner.     

Measurement of mood in adolescents with intellectual disability

To date, there has been limited research into mood responses among adolescents with intellectual disability. One reason for this is the absence of a reliable and valid measure for the assessment of mood among this population. The present study evaluated such a measure among a sample of 135 adolescents with mild intellectual disability. Results supported the factorial validity of a 12-item derivative of the Profile of Mood States, referred to as the Intellectual Disability Mood Scale (IDMS). Convergent and divergent validity was also supported. Overall, the IDMS showed encouraging psychometric characteristics as a measure of mood among adolescents with intellectual disability. It is hoped that the results of this study will stimulate further research to expand our knowledge of mood responses among this population.     

Epilepsy in a sample of children with intellectual disability in Jordan

This study assessed the prevalence of epileptic seizures in 378 children attending special education centres for students with intellectual disability in the city of Amman in Jordan. The findings indicated that 20% of the sample had a history of epilepsy. Significant association was found between epilepsy and severity of intellectual disability. Epilepsy was more prevalent among males than females and among younger than older children, but differences lacked statistical significance.     

Math practice and its influence on math skills and executive functions in adolescents with mild to borderline intellectual disability

Adolescents with mild to borderline intellectual disability (MBID) often complete schooling without mastering basic math skills, even though basic math is essential for math-related challenges in everyday life. Limited attention to cognitive skills and low executive functioning (EF) may cause this delay. We aimed to improve math skills in an MBID-sample using computerized math training. Also, it was investigated whether EF and math performance were related and whether computerized math training had beneficial effects on EF. The sample consisted of a total of 58 adolescents (12–15 years) from special education. Participants were randomly assigned to either the experimental group or a treatment as usual (TAU) group. In the experimental condition, participants received 5 weeks of training. Math performance and EF were assessed before and after the training period. Math performance improved equally in both groups. However, frequently practicing participants improved more than participants in the control group. Visuo-spatial memory skills were positively related to addition and subtraction skills. Transfer effects from math training to EF were absent. It is concluded that math skills may increase if a reasonable effort in practicing math skills is made. The relation between visuo-spatial memory skills provides opportunities for improving math performance.