Psychometric properties of the Chinese Behavior Problems Inventory-01 in children and adolescents with or at risk for intellectual disabilities

As the world's most populous country, China is likely to have the highest number of people with intellectual disabilities (ID) in the world. As many people with ID are susceptible to serious and persistent behavior problems, research by Chinese scientists on this public health issue is needed. However, there are only very few reliable Chinese-language behavior assessment instruments for problem behaviors. To fill this gap we translated the Behavior Problems Inventory-01 (BPI-01; Rojahn, Matson, Lott, Esbensen, & Smalls, 2001) into Chinese. The BPI-01 is an informant-based behavior rating instrument that was designed to assess self-injurious behavior (SIB), stereotyped behavior, and aggressive/destructive behavior in individuals with ID. We then assessed the behavior of 222 children and young adults (age range 1.5–21.5 years) with or at risk for ID from three special needs service programs in mainland China. Teachers or staff members, respectively, served as respondents. The Chinese version of the BPI-01 showed good reliability (internal consistency) and good factor validity tested by confirmatory factorial analysis. We conclude that the Chinese version of the BPI-01 can be used for research and clinical evaluation of Chinese children and adolescents with ID.     

An investigation of self-injurious behaviors in adults with severe intellectual disabilities

Self-injurious behavior (SIB) is commonly observed among individuals with intellectual disability (ID) living in state-run supports and services centers. Specific examples of SIB include poking oneself in the eye; harming oneself by hitting, scratching, or pinching; and pica (i.e., swallowing objects causing bodily harm). Previous research has focused on SIB in individuals with ID more generally without focusing on specific levels of ID or taking into account other important personal variables. This study examined 45 adults with severe ID living in two large state-run facilities in the Southeastern United States who were separated into groups for comparison (ASD and non ASD; verbal and nonverbal). Data was collected on the presence of SIB using the Autism Spectrum Disorder-Problem Behavior Adult Version (ASD-PBA). A two-way analysis of variance (ANOVA) was conducted to determine if there were significant differences between groups on rates of SIB. Individuals with ID and ASD exhibited significantly higher rates of SIB than individuals with only ID, F (1,43) = 50.84, p < 0.05. Furthermore, verbal individuals had significantly higher rates of SIB than nonverbal individuals, F (1,43) = 57.612, p < 0.05. There was a significant interaction between the effects of ASD diagnosis and verbal ability on rates of SIB, F (1,43) = 50.84, p < 0.05. The implications of these findings in the context of other research on ID, ASD, SIB, and verbal abilities are discussed.     

Maladaptive behaviors are linked with inefficient sleep in individuals with developmental disabilities

The purpose of the current study was to assess the relations between nightly sleep patterns and the frequency of daily maladaptive behavior. Antecedent and consequential relations between sleep patterns and behavior were evaluated with time series analysis. Sleep efficiency and maladaptive behavior were determined for 20 female residents of an institutional care facility for adults with developmental disabilities. Daily maladaptive behavioral data and nightly sleep/awake logs were collected for 4 months for each participant. Efficient sleep patterns were significantly associated with lower frequencies of maladaptive behaviors. All lagged cross-correlations 8 days before and 8 days after an evening of sleep were significant. These findings suggested that inefficient sleep was associated with increased maladaptive behaviors and that the lagged associations reflected a chronic but not an acute linkage between sleep and behavior.     

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.     

Individuals with Smith-Magenis syndrome display profound neurodevelopmental behavioral deficiencies and exhibit food-related behaviors equivalent to Prader-Willi syndrome

Smith-Magenis syndrome (SMS) is a neurodevelopmental disorder associated with intellectual disability, sleep disturbances, early onset obesity and vast behavioral deficits. We used the Behavior Problems Inventory-01 to categorize the frequency and severity of behavioral abnormalities in a SMS cohort relative to individuals with intellectual disability of heterogeneous etiology. Self-injurious, stereotyped, and aggressive/destructive behavioral scores indicated that both frequency and severity were significantly higher among individuals with SMS relative to those with intellectual disability. Next, we categorized food behaviors in our SMS cohort across age using the Food Related Problems Questionnaire (FRPQ) and found that problems began to occur in SMS children as early as 5–11 years old, but children 12–18 years old and adults manifested the most severe problems. Furthermore, we evaluated the similarities of SMS adult food-related behaviors to those with intellectual disability and found that SMS adults had more severe behavioral problems. Many neurodevelopmental disorders exhibit syndromic obesity including SMS. Prader-Willi syndrome (PWS) is the most frequent neurodevelopmental disorder with syndromic obesity and has a well-established management and treatment plan. Using the FRPQ we found that SMS adults had similar scores relative to PWS adults. Both syndromes manifest weight gain early in development, and the FRPQ scores highlight specific areas in which behavioral similarities exist, including preoccupation with food, impaired satiety, and negative behavioral responses. SMS food-related behavior treatment paradigms are not as refined as PWS, suggesting that current PWS treatments for prevention of obesity may be beneficial for individuals with SMS.     

Family environment of eating disordered patients with and without self-injurious behaviors

OBJECTIVE: The family environment is known to be an important contributor to the course of psychiatric disorders. In this study, we examined the family context of eating disordered (ED) patients with and without self-injurious behaviors (SIB). METHOD: A Dutch adaptation of the Family Environment Scale "Sci Eng 57(9-B):1997;5927" was completed by 131 ED patients of whom 47% showed at least one form of SIB (e.g., cutting, burning, hair pulling, etc.). RESULTS: Results showed a significant difference in family environment between patients with and without SIB. The family environment of self-injuring ED patients was less cohesive, expressive and socially oriented, and more conflictual and disorganized than the family environment of those without SIB. No significant differences in perceived family environment were found with respect to the number or form of SIB and the subtype of ED. Neither did we find a significant interaction effect between ED subtype and presence/absence of SIB.     

Identifying empirically supported treatments for pica in individuals with intellectual disabilities

The purpose of the current study was to critically examine the existing literature on the treatment of pica displayed by individuals with intellectual disabilities. Criteria for empirically supported treatments as described by Divisions 12 and 16 of APA, and adapted for studies employing single-case designs were used to review this body of literature. A total of 34 treatment studies were identified, 25 of which were well designed and reported at least an 80% reduction in pica (21 studies reported 90% or greater reduction in pica). Results indicated that behavioral treatments in general, and treatments involving the combination of reinforcement and response reduction procedures in particular, can be designated as well-established treatments for pica exhibited by individuals with intellectual disabilities.     

Pain disrupts sleep in children and youth with intellectual and developmental disabilities

Both chronic pain and sleep problems are common for children with intellectual and developmental disabilities (IDD). Although one study has revealed a relationship between having a medical condition and sleep problems in this population, the role of pain was not examined independently. Thus, the goal of this study was to clarify the specific role of pain in children's sleep problems. Caregivers of 123 children with IDD (67 male; mean age = 10 years, 7 months (SD = 49.7 months)) completed the Children's Sleep Habits Questionnaire (CHSQ) and provided information about children's pain, function and demographic characteristics. Children were grouped as having: No Pain (86), Treated Pain (21), or Untreated Pain (16). A Multivariate Analysis of Variance (MANOVA) indicated children who had pain had significantly more sleep problems overall (F(16, 222) = 2.2, p = .005), and more Night Wakings (F(2, 118) = 3.1, p = .05), Parasomnias (F(2, 118) = 5.0, p = .009) and Sleep Disordered Breathing (F(2, 118) = 5.1, p = .008) in particular. The pattern of sleep problems varied due to whether the child was taking pain medication. Children with pain also had significantly shorter typical sleep duration (F(2, 112) = 3.5, p = 0.035). The presence of sleep problems did not vary due to functional level or whether children were taking sleep medications. However, parents of children who were taking sleep medications reported that both Bedtime Resistance (F(1, 121) = 5.7, p = .019) and Sleep Duration (F(1, 121) = 6.0, p = .016) were more problematic for them. This data indicates pain disrupts sleep in children with IDD even when it is being managed pharmacologically, suggesting pain treatment may not be effective. These results suggest that pain should be considered during evaluation and management of sleep problems in children with IDD.     

Gait characteristics in individuals with intellectual disabilities: A literature review

Gait is a functionally highly relevant aspect of motor performance. In the general population poorer gait increases the risk of falls and is a predictor for future disability, cognitive impairment, institutionalization and/or mortality. People with intellectual disabilities (ID) show a delayed motor development, which brings to attention the abnormalities that might accompany gait in this population throughout childhood and adulthood. Therefore, this paper aims (a) to provide a focused review of the available literature on gait characteristics in individuals with ID and (b) to gain insight into available instrumentations measuring gait in this population. We searched the database of PubMed for relevant articles and the reference lists of included articles, resulting in 44 included articles. Forty one studies reported gait characteristics during over-ground walking and six studies during perturbed walking conditions. Most studies investigated syndrome-specific ID populations, only five studies investigated the general ID population. The studies show that gait abnormalities are evident during over-ground walking in the ID population, both in people with genetic syndromes and with ID without genetic syndromes. During perturbed conditions people with ID altered their gait with stability-enhancing adaptations. Abnormalities in gait may be partly explained by physical features, but the interrelatedness between gait and cognition may also be an explanation for the gait abnormalities seen in the ID population. Further research regarding gait characteristics of the ID population, and its relation to cognitive functioning, and adverse health outcomes is needed.     

The relationship between self-determination and academic achievement for adolescents with intellectual disabilities

Previous research has demonstrated that for students with intellectual disabilities, improved self-determination skills are positively correlated with productivity and organization during school and quality of life outcomes in adulthood. Despite extensive investigation in these areas, the predictive relationship between self-determination and academic achievement for students with intellectual disabilities has not been fully established. This study utilized the sample from the National Longitudinal Transition Study-2 of 480 adolescents with intellectual disabilities in the United States in an attempt to provide a possible empirical explanation of the relationship between academic achievement and self-determination, taking into account the covariates of gender, family income and urbanicity. The structural equation model was found to closely fit the data: all path coefficients were statistically significant. The results of this study identify a strong correlation between self-determination and academic achievement for adolescents with intellectual disabilities, indicating a linear relationship of these skills and supporting an increased focus on the teaching of self-determination skills.     

Reduction of restraint of people with intellectual disabilities: an organizational behavior management (OBM) approach

We used an organizational behavior management (OBM) approach to increase behavior intervention plans and decrease the use of mechanical restraint. First, recipients were tracked as a member of the priority group if they engaged in frequent self-injurious behavior or physical aggression toward others and/or if they had been placed in mechanical restraint as a result of the problem behaviors. Second, a behavior data monitoring and feedback system was put in place. Third, organizational contingencies for the use of mechanical restraint or the occurrence of frequent self-injurious behavior or physical aggression toward others were initiated. Over the course of 17 months, behavior intervention plans were more than doubled to 124 and mechanical restraints decreased by almost 80%. This study represents the first to use an organizational behavior management (OBM) to reduce restraint with people who have intellectual disabilities.     

Psychological therapies for people with intellectual disabilities: A systematic review and meta-analysis

The aim of this study was to evaluate the efficacy of psychological therapies for people with intellectual disabilities (IDs) through a systematic review and meta-analysis of the current literature. A comprehensive literature search identified 143 intervention studies. Twenty-two trials were eligible for review, and 14 of these were subsequently included in the meta-analysis. Many studies did not include adequate information about their participants, especially the nature of their IDs; information about masked assessment, and therapy fidelity was also lacking. The meta-analysis yielded an overall moderate between-group effect size, g = .682, while group-based interventions had a moderate but smaller treatment effect than individual-based interventions. Cognitive-behaviour therapy (CBT) was efficacious for both anger and depression, while interventions aimed at improving interpersonal functioning were not effectual. When CBT was excluded, there was insufficient evidence regarding the efficacy of other psychological therapies, or psychological therapies intended to treat mental health problems in children and young people with IDs. Adults with IDs and concurrent mental health problems appear to benefit from psychological therapies. However, clinical trials need to make use of improved reporting standards and larger samples.     

Rasch analysis of the Developmental Test of Visual-Motor Integration in children with intellectual disabilities

The purpose of this study was to examine the measurement properties of the Developmental Test of Visual-Motor Integration (VMI) in children with intellectual disabilities (ID) ages 4–12 years using the dichotomous Rasch model. The VMI was administered individually to 454 children with ID. Rasch analysis was applied to investigate unidimensionality, item fit to the model, differential item functioning (DIF), and item targeting. Discriminative validity was obtained by receiver operating characteristic (ROC) curve analysis. Items were eliminated if the task was too easy or too difficult, or showed misfit to the Rasch model. The remaining items fitted the unidimensional construct the test was intended to measure and were free of DIF. The Rasch reduced version of the VMI with 9 items appeared to be suited to measure mild degrees of perceptual-motor impairment and demonstrated excellent reliability (0.91). VMI-9 had a larger area under the ROC curve in its ability to differentiate mild versus moderate to severe ID compared with the original version. Taken together, the VMI-9 provides a quick, reliable and valid measure for screening and identifying perceptual-motor deficits in children with ID.     

The making of a field: The development of comorbid psychopathology research for persons with intellectual disabilities and autism

Knowledge in the area of developmental disabilities has been expanding rapidly. One area that has received particular attention is the topic of related comorbid conditions. This phenomenon is not exclusive to the field of developmental disabilities. However, research with this population is of recent origin. The purpose of this paper is to review the origins of this field including some of the notable developments and potential future trends.     

The progression of severe behavior disorder in young children with intellectual and developmental disabilities

Behavior disorders, such as self-injurious, stereotypic, and aggressive behavior are common among individuals with intellectual or developmental disabilities. While we have learned much about those behaviors over the past few decades, longitudinal research that looks at developmental trajectory has been rare. This study was designed to examine the trajectory of these three forms of severe behavior disorders over a one year time period. The behaviors were measured on two dimensions: frequency of occurrence and severity. Participants were 160 infants and toddlers at risk for developmental delays in Lima, Peru. Using structural equation modeling, we found that the frequency of self-injury and stereotypic behavior and the severity of aggressive behavior remained stable over the 12-month period. Uni-directional structural models fit the data best for self-injurious and aggressive behavior (with frequency being a leading indicator of future severity of self-injury and severity being a leading indicator of future frequency for aggression). For stereotypic behavior, a cross-lagged autoregressive model fit the data best, with both dimensions of frequency and severity involved as leading indicators of each other. These models did not vary significantly across diagnostic groups, suggesting that toddlers exhibiting behavior disorders may be assisted with interventions that target the specific frequencies or severities of behaviors, regardless of diagnostic category.     

Self-injurious behavior in people with profound intellectual disabilities: a meta-analysis of single-case studies

The limitations people with profound intellectual disabilities experience in functioning contribute to a vulnerability to self-injurious behavior. Since this problem behavior has important negative consequences for people concerned, examining the effectiveness of treatments is important. In the current meta-analysis, single-case studies investigating non-aversive, non-intrusive forms of reinforcement were combined using hierarchical linear models. This analysis revealed that the average effect of treatment was relatively large and statistically significant. Further, significant variance was observed between both studies and participants. In addition, some evidence was found for a moderator effect of sensory impairment. Finally, no statistically significant moderator effects of medication, motor impairment, setting, age, gender, matching of treatment with behavioral function and contingency were found.     

Clinical predictors of severe behavioural problems in people with intellectual disabilities referred to a specialist mental health service

Associations between demographic and clinical variables and severe behavioural problems in people with intellectual disabilities were examined in a cross-sectional survey of 408 adults consecutively referred to a specialist mental health service. Severe behavioural problems were present in 136 (33.3%) of the sample. The demographic and clinical predictors of severe behavioural problems in this sample were identified by logistic regression. Age and gender were not associated with severe behavioural problems. The presence of severe ID independently predicted the presence of severe behavioural problems. Schizophrenia spectrum disorders and personality disorders independently predicted the presence of severe behavioural problems, whereas the presence of an anxiety disorder independently predicted their absence. There is an increasing evidence base of relationships between mental disorders and behavioural problems in people with ID although the pattern of these relationships remains unclear.     

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.     

Diabetes in people with intellectual disabilities: A systematic review of the literature

ObjectiveTo present an analysis of the evidence related to the prevalence of diabetes in people with intellectual disabilities (ID), their experiences of their condition and treatment and those of their carers.Materials and methodsA systematic literature review was conducted. A total of 22 studies exploring diabetes prevalence and 5 exploring views and experiences of diabetes in people with ID were identified and included. A narrative synthesis approach was utilised to amalgamate data extracted from the included studies regarding some 49,046 participants with ID and diabetes and 31 care professionals and family members across Europe, North America, New Zealand, Australia, China and Hong Kong.ResultsPrevalence rates of diabetes in people with ID were highly varied, ranging from 0.4% to 25%. 7 studies reported significantly higher rates of diabetes in people with ID than the general population. People with ID reported a basic understanding of diabetes and wanted to know more. Carers reported that they lack diabetes knowledge and do not routinely encourage diabetes self-management skills. Several studies neglected to report vital demographic information such as participants’ level of ID (13 studies) and diabetes type (16 studies) and the quality of included prevalence studies was variable.ConclusionsFurther research in this field is required, notably prevalence studies which control for participant demographics and personal situations to obtain more accurate diabetes prevalence rates in this population group. People with ID and diabetes should be encouraged to participate in future research and we recommend exploring the feasibility of adapting current mainstream diabetes management programmes for these individuals.     

Job burnout amongst the institutional caregivers working with individuals with intellectual and developmental disabilities: Utilization of the Chinese version of the Copenhagen Burnout Inventory survey

Burnout has been considered important to understand the well-being of people who work with individuals with intellectual disabilities (ID) and developmental disabilities (DD). To identify personal and workplace characteristics associated with burnout, this study aimed to utilize the Chinese version of the Copenhagen Burnout Inventory to provide a burnout profile of caregivers who served individuals with ID/DD and evaluate the potential factors associated with burnout in this group. A purposive sampling method and a self-administered structured questionnaire were employed to recruit 276 caregivers from 4 different disability institutions for study participation. The results revealed that the average personal burnout score (PBS) and work-related burnout score (WBS) were 44.0 (SD = 16.8) and 34.2 (SD = 15.9). These burnout scores were higher compared with general full time employees in Taiwan. The results showed that that 17.8% of the staff were moderately burnt out (PBS score: 50–70), and 7.6% of the staff were in the highest exhausted level (PBS score ≧ 70) of PBS. With regard to the WBS score, 20.7% were moderately burnt out (PBS score: 50–70), and 5.1% of the staff were in the highest exhausted level (WBS score ≧ 70). Finally, a multiple regression analysis reported that the factors of self-report health status and WBS significantly predicted higher respondent PBS (R² = 0.642). The study highlights the need to improve the psychological health and well-being of the caregivers who work with individuals with ID/DD and the need for the institutions to strengthen supportive healthy working environments to decrease staff burnout.