Agreement in quality of life assessment between adolescents with intellectual disability and their parents

Intellectual disability affects different aspects of functioning and quality of life, as well as the ability to independently assess the quality of life itself. The paper examines the agreement in the quality of life assessments made by adolescents with intellectual disability and their parents compared with assessments made by adolescents without intellectual disability and their parents.Participants included 67 adolescents with intellectual disability and the same number of their parents. Control group consisted of 122 typically developed adolescents and an equal number of their parents. In order to assess the quality of life we used The PedsQL 4.0 Generic Core Scale questionnaire, for adolescents aged between 13 and 18 and their parents. Agreement in assessing quality of life between adolescents and parents was analyzed using t-test, Kappa Statistics and Pearson correlation.The agreement between adolescents with intellectual disability and their parents was found to be acceptable (k = 0.43), while the agreement between adolescent from control group and their parents was judged to be good (k = 0.84). Correlations between adolescents with intellectual disability and their parents varied across subscales from weak (r = 0.31) on the physical health subscale to moderate (r = 0.56) on the social subscale. Adolescents with intellectual disability were less satisfied with their social functioning. The highest agreement, as well as the lowest means value was found on the social agreement scale.Assessment of the quality of life by both adolescents and their parents provides a comprehensive insight into functioning and different aspects of quality of life in these adolescents.     

New model of mapping difficulties in solving analogical problems among adolescents and adults with intellectual disability

The main goal of the study was to map the difficulties and cognitive processes among adolescents (aged 13-21, N = 30) and adults (aged 25-66, N = 30) with mild and moderate intellectual disability (ID) when solving analogical problems. The participants were administered the Conceptual and Perceptual Analogical Modifiability test. A three-fold tailored dynamic assessment (DA) model for mapping difficulties was constructed based on Sternberg's analogical components model (encoding, inference, mapping, application): (a) mapping pre-teaching difficulties; (b) assessing the level of mediation; and (c) analyzing post-teaching responses. Another goal was to find out whether participants receiving “tailored” mediation would receive higher scores than participants receiving the standard DA procedure (adolescents aged 14-20; N = 30) and adults (25-55, N = 31). Repeated measures MANOVA of time × age × ID level indicated significant pre to post-teaching improvement across all age groups and ID levels. The adults gained more from mediation than the adolescents. The tailored DA model was more effective in producing change than the standard DA model. The greatest difficulties in the pre-teaching stage were in inference and mapping of perceptual analogies, where the participants received the highest level of mediation. Stepwise regression analysis indicated that inference, ID level and age predicted modifiability in the application of conceptual analogies, whereas encoding, ID level and mediation for inference predicted modifiability in the application of perceptual analogies.     

Analysis of seasonal influenza vaccine uptake among children and adolescents with an intellectual disability

The aim of the present study was to describe the seasonal influenza vaccination rate and to examine its determinants for children and adolescents with intellectual disabilities (ID) living in the community. A cross-sectional survey was conducted to analyze the data on seasonal influenza vaccination rate among 1055 ID individuals between the ages of 12-18 years. The results found that 22.9% of the study participants used the vaccine during the past three years, and the vaccination rate among different age groups varied from 18.1 to 26.5%. There was no gender difference of seasonal influenza vaccination rate among age groups. Multilevel logistic regression analysis revealed that ID individuals with moderate (OR = 1.59, 95% CI = 1.08-2.34) or severe (OR = 2.31, 95% CI = 1.20-4.45) disability, with an illness (OR = 1.64, 95% CI = 1.02-2.63), who have general health exams (ever used, OR = 1.57, 95% CI = 1.03-2.40; regularly used, OR = 1.89, 95% CI = 1.05-3.41) were more likely to have seasonal influenza vaccination than their counterparts. The present study highlights that the substantial disparity in receipt of seasonal influenza vaccine in children and adolescents with ID reflects the effects of disability level, disease condition, and general health exam experience and suggests the need for greater attention to factors affecting ID individuals to improve their preventive health care.     

Effects of a Special Olympics Unified Sports soccer program on psycho-social attributes of youth with and without intellectual disability

The purpose of the study was to investigate the effects of a Special Olympics (SO) Unified Sports (UNS) soccer program on psycho-social attributes of youth with and without intellectual disabilities (ID). Participants were 76 male youth with (n = 38) and without (n = 38) ID. Participants with ID were randomly allocated into a SO athletes group (n = 23, mean age = 14.5; SD = 1.2 years) and a control group (CG) (n = 15, mean age = 14.5; SD = .8 years). Twenty-three randomly selected youth without ID formed the partner group (mean age = 14.1; SD = .9 years) and 15 youth without ID (mean age = 13.8; SD = .5 years) formed the CG. Instruments included the Friendship Activity Scale (FAS) (Siperstein, 1980), the Adjective Checklist (Siperstein, 1980), and the Children Behavior Checklist (Achenbach, 1991). The soccer training program lasted eight weeks, 1.5 h per session, three times per week, in addition to school physical education (PE). The CG did not participate in any sports in addition to PE. The findings showed that the UNS program was effective in decreasing the problem behaviors of youth with ID and increasing their social competence and FAS scores. In addition, the program was found to be effective in improving the attitude of youth without disabilities toward participants with disabilities. In conclusion, the present findings demonstrate the utility of a UNS program for both youth with and without disabilities.     

Work stress, burnout, and social and personal resources among direct care workers

Work stress is endemic among direct care workers (DCWs) who serve people with intellectual and developmental disabilities. Social resources, such as work social support, and personal resources, such as an internal locus of control, may help DCWs perceive work overload and other work-related stressors as less threatening and galvanize them to cope more effectively to prevent burnout. However, little is known about what resources are effective for coping with what types of work stress. Thus, we examined how work stress and social and personal resources are associated with burnout for DCWs.We conducted a survey of DCWs (n = 323) from five community-based organizations that provide residential, vocational, and personal care services for adults with intellectual and developmental disabilities. Participants completed a self-administered survey about their perceptions of work stress, work social support, locus of control, and burnout relative to their daily work routine. We conducted multiple regression analysis to test both the main and interaction effects of work stress and resources with respect to burnout.Work stress, specifically work overload, limited participation decision-making, and client disability care, was positively associated with burnout (p < .001). The association between work social support and burnout depended on the levels of work overload (p < .05), and the association between locus of control and burnout depended on the levels of work overload (p < .05) and participation in decision-making (p < .05). Whether work social support and locus of control make a difference depends on the kinds and the levels of work stressors.The findings underscore the importance of strong work-based social support networks and stress management resources for DCWs.     

Parental assessment of pain coping in individuals with intellectual and developmental disabilities

Pain coping is thought to be the most significant behavioural contribution to the adjustment to pain. Little is known about how those with intellectual and developmental disabilities (IDD) cope with pain. We describe parental reported coping styles and how coping relates to individual factors. Seventy-seven caregivers of children and adults with IDD reported on coping styles using the Pediatric Pain Coping Inventory (PPCI), pain behaviour using the Non-Communicating Children's Pain Checklist—Revised (NCCPC-R), illness-related interactions using the Illness Behaviour Encouragement Scale (IBES) and past pain experience using the Structured Pain Questionnaire. Scores were compared across mental ages and interactions between pain coping and the other factors were explored. A Multivariate Analysis of Variance (MANOVA) by mental age group (‘≤4 years’, ‘5-11 years’ and ‘≥12 years’) revealed that those in the ‘5-11 years’ mental age group used more coping styles than those in the ‘≤4 years’ mental age group, and those in the ‘≥12 years’ group used more cognitively demanding coping styles than the other two groups (F_(10,130) = 2.68, p = .005). Seeking Social Support (r = .39, p = .001) and Catastrophizing/Helplessness (r = .33, p < .01) coping styles were significantly related to a greater display of pain behaviour. Those with younger mental ages, who Seek Social Support or Catastrophize, also displayed more pain behaviour, which may be an attempt to seek external resources when pain is beyond their ability to deal with independently.     

A retrospective population-based data analyses of inpatient care use and medical expenditure in people with intellectual disability co-occurring schizophrenia

The paper aims to analyze the hospital inpatient care use and medical fee of people with ID co-occurring with schizophrenia in Taiwan. A nationwide data were collected concerning hospital admission and medical expenditure of people with ID (n = 2565) among national health insurance beneficiaries in Taiwan. Multiple regression analyses were undertaken to determine the role of the explanatory variables to hospital psychiatric inpatient care and medical expenditure. We found that there were 2565 individuals with ID used hospital psychiatric inpatient care among people with ID in 2005, and 686 cases (26.7%) co-occurring with schizophrenia according to hospital discharge claims. Those ID patients co-occurring with schizophrenia consumed more annual inpatient fee than those without schizophrenia (251,346 vs. 126,666 NTD) (p < 0.001). We found factors of female cases, longer hospital stay in chronic ward and general ward users among ID patients co-occurring with schizophrenia used more hospital inpatient care (R² = 0.417). Annual hospital inpatient days were significantly affected by factors of severe illness card holder, annual inpatient care fee, longer hospital stay in acute or chronic ward (R² = 0.746). Those factors of female cases, high inpatient care users, longer hospital stay in acute ward and general ward were consuming more medical care fee than their counterparts (R² = 0.620). The study highlights the future study should examine the efficacy of hospital inpatient care for people with ID and schizophrenia.     

Evaluating physical activity using accelerometry in children at risk of developmental coordination disorder in the presence of attention deficit hyperactivity disorder

Physical activity (PA) is compromised in children and adolescents with developmental coordination disorder (DCD). Approximately half of all children with DCD suffer from attention-deficit hyperactive disorder (ADHD); a cohort often considered more physically active than typically developing youth. Accelerometry is an effective method of assessing physical activity patterns; although estimates of PA in children with DCD using this quantifiable method have not been attempted. We hypothesize that children with co-morbid DCD/ADHD will be more physically active than children with DCD and healthy peers. Therefore, the purpose of this study was to contrast physical activity (step count and activity energy expenditure using accelerometry [AEE]) between children with DCD, co-morbid DCD and ADHD (DCD/ADHD), and healthy controls. A sample of 110 children with DCD (N = 32), DCD/ADHD (N = 30) and controls (N = 48) age 12-13 years agreed to participate. Co-morbid DCD/ADHD was present in nearly half of the children with DCD (48.4%). Analysis of covariance demonstrated a positive interaction for females step count (F[1,92] = 4.92, p = 0.009). A significant group difference for step count (F[1,92] = 4.43, p = .04) was identified in females. Post hoc comparison tests identified significantly lower step count between males with DCD and controls (p = .004) and males with DCD/ADHD and controls (p = 0.003). Conversely, females with DCD/ADHD had significantly more step counts than their controls (p = .01). Hyperactivity in females with DCD/ADHD appears to contribute to more physical activity, whereas DCD may contribute to decreased activity in males with DCD and DCD/ADHD. Hyperactivity expressed among girls with DCD/ADHD appears to override the hypoactive behavior associated with females with DCD. Conversely, the expression of hyperactivity among boys with DCD/ADHD does not translate as hypothesized. The contrasting expression of physical activity (i.e., step count and AEE) evaluated using accelerometry in boys and girls with DCD, co-morbid DCD/ADHD and healthy peers are intriguing and constitute further investigation in a larger investigation.     

Psychometric properties of a sleep questionnaire for use in individuals with intellectual disabilities

We examined the psychometric properties of one part of the Sleep Questionnaire developed by Simonds and Parraga (SQ-SP; 1982), a questionnaire that is frequently used to explore sleep problems and behaviors related to sleep in individuals with intellectual disability (ID). The SQ-SP was completed for 345 individuals with ID (sleep clinic n = 146; control group n = 103; published studies n = 68; psychiatric clinic n = 28). Internal consistency was good (Cronbach's α = .80) and test-retest reliability for the total SQ-SP score was also good (Spearman's rank correlation = .83, p < .01). Convergent validity was adequate (r = .79, p < .001) and concurrent validity was satisfactory (r = .52, p < .001). Exploratory factor analysis suggested a 5-factor structure (Snoring, Daytime sleepiness, Complaints related to sleep, Sleep apnea and Anxiety related to sleep). Internal consistency of the five factors ranged from modest (Cronbach's α = .57) to good (Cronbach's α = .82). Confirmatory factor analysis corroborated the 5-factor structure. The Composite Sleep Index, the total SQ-SP score and the factor scores on Daytime Sleepiness and Complaints related to sleep were able to differentiate the control group from the sleep clinic group. The SQ-SP appears to be a reliable and valid tool in assessing sleep and different types of sleep disturbance in individuals with ID.     

Depression and Anxiety Symptoms in Children and Adolescents with Autism Spectrum Disorders without Intellectual Disability

Recent studies have shown that rates of depression and anxiety symptoms are elevated among individuals with autism spectrum disorders (ASDs) of various ages and IQs and that depression/anxiety symptoms are associated with higher IQ and fewer ASD symptoms. In this study which examined correlates of depression and anxiety symptoms in the full school-age range of children and adolescents (age 6-18) with ASDs and IQs ≥ 70 (n = 95), we also observed elevated rates of depression/anxiety symptoms, but we did not find higher IQ or fewer ASD symptoms among individuals with ASDs and depression or anxiety symptoms. These findings indicate an increased risk for depression/anxiety symptoms in children and adolescents with ASDs without intellectual disability, regardless of age, IQ, or ASD symptoms.     

Parent artery occlusion with bypass surgery for the treatment of internal carotid artery aneurysms: Clinical and hemodynamic results

Objective

Parent artery occlusion with/without bypass surgery is one of the treatment choices for the internal carotid artery (ICA) aneurysm difficult to treat by clipping or coiling. There have been few reports regarding postoperative cerebral blood flow (CBF) changes after surgery. This study evaluated the present bypass selection strategy based on balloon test occlusion (BTO) in terms of clinical and hemodynamic outcomes.

Methods

Twenty-one consecutive patients with ICA aneurysms underwent parent artery occlusion. High flow bypass (n = 9), superficial temporal artery–middle cerebral artery bypass (n = 10), or no bypass (n = 2) was performed depending on the changes in clinical symptoms and CBF during BTO. Quantitative CBF measurement with acetazolamide challenge was performed in the chronic stage.

Results

Overall outcome at discharge was good recovery 18, moderate disability 2, and severe disability 1. Two patients suffered symptomatic embolic or perforator infarction associated with the surgical manipulations. Preoperative cranial nerve pareses improved completely or partially in all patients except one. CBF in the chronic stage (n = 18) demonstrated no significant difference between the surgical and non-surgical cerebral hemispheres. No cerebral ischemic event was observed during the follow-up period (mean 2.9 years).

Conclusion

The present surgical strategy based on preoperative BTO provides a reliable tool to achieve acceptable clinical and hemodynamic outcomes in patients with complex ICA aneurysms to be treated by parent artery occlusion.     

Physical activity levels of adolescents with and without intellectual disabilities during physical education and recess

To compare physical activity levels in adolescents with and without intellectual disabilities during physical education and recess. Forty adolescents diagnosed with intellectual disabilities (inclusive classrooms, n = 20; self-contained classrooms, n = 20) and 40 age-matched typically developing peers (general classrooms) participated. All participants wore an Actigraph GT1M accelerometer for 5 consecutive weekdays during school hours. Three groups of adolescents were similarly active during physical education; however, adolescents with intellectual disabilities in self-contained classrooms were less active during recess than did the other two groups. In addition, they spent less percentage of time in moderate-to-vigorous physical activity during recess than did the typically developing adolescents. An inclusive, structured, and supportive environment promotes physical activity engagement in adolescents with intellectual disabilities.     

The study of geographic differences in the prevalence of disability among Taiwanese population

The present study analyzes data of the governmental reported general population and population of persons with disabilities from 2002 to 2009, to describe the disability prevalence and to test the overtime change with particular focused on the geographic differences in Taiwan. In average, the disability prevalence was 42.06‰ (range = 31.06‰-80.04‰ in different areas) of the general population during the past 8 years. We found that the disability prevalence in general population (R² = 0.991; p < 0.001), disability prevalence in men (R² = 0.992; p < 0.001) and in women (R² = 0.991; p < 0.001) were significantly increased in curve tests of the study. The disability number were more populous in north or west urban areas (such as Taipei County, Taipei City, Taoyuan County, Taichung County, Kaohsiung City), however, those areas of higher disability prevalence were more likely to locate in east and central remote areas (such as Taitung County = 80.04‰; Yunlin County = 71.95‰; Hualien County = 71.59‰; Chiayi County = 63.51‰ and Yilan County = 59.91‰). The study highlights that the uneven distribution of disability prevalence will bring challenges of health and social welfare services for this group of population. We suggest the authorities should scrutinize the disparity of disability prevalence in different geographic area to examine the equality of social welfare resources distribution in Taiwan.     

Religious involvement is associated with greater purpose,optimism, generosity and gratitude in persons with major depression and chronic medical illness

Objective

Religious involvement may help individuals with chronic medical illness cope better with physical disability and other life changes. We examine the relationships between religiosity, depressive symptoms, and positive emotions in persons with major depression and chronic illness.

Methods

129 persons who were at least somewhat religious/spiritual were recruited into a clinical trial to evaluate the effectiveness of religious vs. secular cognitive behavioral therapy. Reported here are the relationships at baseline between religious involvement and depressive symptoms, purpose in life, optimism, generosity, and gratefulness using standard measures.

Results

Although religiosity was unrelated to depressive symptoms (F = 0.96, p = 0.43) and did not buffer the disability–depression relationship (B = − 1.56, SE 2.90, p = 0.59), strong relationships were found between religious indicators and greater purpose, optimism, generosity, and gratefulness (F = 7.08, p < 0.0001).

Conclusions

Although unrelated to depressive symptoms in the setting of major depression and chronic medical illness, higher religious involvement is associated with positive emotions, a finding which may influence the course of depression over time.     

The siblings relationship of adolescents with and without intellectual disabilities

The sibling relationship of adolescents with and without intellectual disabilities was examined. Participants were 70 sibling dyads - each dyad was comprised of one 12-year old adolescent with (N = 23) or without intellectual disabilities (N = 47). Sibling relationships, behavior problems, and social skills were assessed using mother reports. Results revealed three findings. First, for typically developing adolescents, mothers reported more warmth in the sibling relationship for opposite sex dyads. For adolescents with intellectual disabilities, mothers reported more warmth in the sibling relationship for same-sex dyads. Second, for typically developing adolescents, mothers reported more status/power differences when the sibling was younger than when the sibling was older. For adolescents with intellectual disabilities, birth order did not affect status/power in the sibling relationship. Third, for typically developing adolescents, conflict was related to internalizing behavior problems. For adolescents with intellectual disabilities, conflict was related to externalizing behavior problems. Implications, limitations, and future directions are discussed.     

Effects of computerized match-to-sample training on emergent fraction-decimal relations in individuals with fragile X syndrome

Individuals diagnosed with fragile X syndrome (FXS), the most common known form of inherited intellectual disability, are reported to exhibit considerable deficits in mathematical skills that are often attributed to brain-based abnormalities associated with the syndrome. We examined whether participants with FXS would display emergent fraction-decimal relations following brief, intensive match-to-sample training on baseline relations. The performance profiles on tests of symmetry and transitivity/equivalence of 11 participants with FXS, aged 10-23 years, following baseline match-to-sample training were compared to those of 11 age- and IQ-matched controls with idiopathic developmental disability. The results showed that both groups of participants showed significant improvements in the baseline (trained) relations, as expected. However, participants with FXS failed to show significant improvements in the (untrained) symmetry and transitivity/equivalence relations compared to those in the control group. A categorical analysis of the data indicated that five participants with FXS and eight controls showed at least “intermediate” emergence of symmetry relations, whereas one individual with FXS and three controls showed at least intermediate emergence of transitivity/equivalence relations. A correlation analysis of the data indicated that improvements in the symmetry relations were significantly associated with improvements in the transitivity/equivalence relations in the control group (r = .69, p = .018), but this was not the case in the FXS group (r = .34, p > .05). Participant IQ was significantly associated with improvements in the symmetry relations in individuals with FXS (r = .60, p = .049), but not in controls (r = .21, p > .05). Taken together, these results suggest that brief, computerized match-to-sample training may produce emergent mathematical relations for a subset of children with FXS and developmental disabilities. However, the ability of individuals with FXS to form transitivity/equivalence relations may be impaired relative to those with idiopathic developmental disabilities, which may be attributed to neurodevelopmental variables associated with the syndrome.     

Subjective awareness of tardive dyskinesia and insight in schizophrenia

Background

Lack of awareness of tardive dyskinesia (TD) and poor insight into mental illness are common in schizophrenia, raising the possibility that these phenomena are manifestations of a common underlying dysfunction.

Methods

We investigated relationships between low awareness of TD and poor insight into mental illness in 130 patients with schizophrenia and TD. We also examined selected demographic and clinical correlates of these two phenomena.

Results

Sixty-six (51%) patients had no or low awareness of TD and 94 (72%) had at least mild impairment of insight into their mental illness. Low awareness of TD was not significantly correlated with greater impairment of insight into mental illness. Regression analyses indicated that the Positive and Negative Syndrome Scale (PANSS) disorganised factor (β = 0.72, t = 11.88, p < 0.01) accounted for 52% of the variance in insight into mental illness (adjusted R² = 0.55) (F[2, 127] = 81.00, p < 0.01) and the Extrapyramidal Symptom Rating Scale (ESRS) dyskinesia subscale score (β = 0.47, t = 6.80, p < 0.01), PANSS disorganised factor (β = −0.26, t = −3.73, p < 0.01), and ESRS parkinsonism subscale score (β = 0.31, t = 4.55, p < 0.01) together accounted for 37% of the variance in awareness of TD (adjusted R² = 0.37) (F[3, 126] = 26.87, p < 0.01).

Conclusion

The two phenomena appear to be dissociated, and may be domain-specific.     

Family burden related to clinical and functional variables of people with intellectual disability with and without a mental disorder

Few studies have been found that to assess the factors that explain higher levels of family burden in adults with intellectual disability (ID) and intellectual disability and mental disorders (ID-MD). The aims of this study were to assess family burden in people with ID and ID-MD and to determine which sociodemographic, clinical and functional disability variables account for family burden. The sample is composed of pairs of 203 participants with disability and their caregivers, of which 33.5% are caregivers of people with ID and 66.5% of ID-MD. Assessments were performed using scales of clinical and functional disability as the following instruments: Weschler Adult Intelligence Scale-III (WAIS-III), Inventory for Client and Agency Planning (ICAP), Psychiatric Assessment Schedule for Adults with Development Disability (PAS-ADD checklist), Disability Assessment Schedule of the World Health Organization (WHO-DAS-II) and family burden (Subjective and Objective Family Burden Inventory - SOFBI/ECFOS-II). People with ID-MD presented higher levels of functional disability than those with ID only. Higher levels of family burden were related to higher functional disability in all the areas (p < 0.006-0.001), lower intelligence quotient (p < 0.001), diagnosis of ID-MD (p < 0.001) and presence of organic, affective, psychotic and behavioral disorders (p < 0.001). Stepwise multiple regression showed that behavioral problems, affective and psychotic disorder, disability in participation in society, disability in personal care and presence of ID-MD explained more than 61% of the variance in family burden. An integrated approach using effective multidimensional interventions is essential for both people with ID and ID-MD and their caregivers in order to reduce family burden.