Evaluating a staff training program on the interaction between staff and people with intellectual disability and challenging behaviour: An observational study

Background: The aim of this study was to evaluate the effects of a training program focusing on improvement of emotional intelligence (EI) and support staffs’ awareness of their behaviour towards people with an intellectual disability based on interactional patterns. The support provided regarding the needs for autonomy, relatedness, and competence was observed in line with self-determination theory (SDT).

Method: A pre-test–post-test control group design (N?=?29) was used, with 17 support staff participating in the experimental group. For both groups, video recordings of interactions between staff and clients were analysed with an SDT-observation system.

Results: The results showed that a training program focusing on EI and interactional patterns positively affected the support provided by staff with regard to clients’ needs for autonomy, relatedness, and competence.

Conclusions: As most EI studies focus on insights and understanding of oneself, this study is an important first step in focusing on staff behaviour during daily interactions.     

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.     

Prevalence and factors associated with polypharmacy in Victorian adults with intellectual disability

Although polypharmacy is a medication safety concern leading to increased risk of non-adherence, adverse drug reaction and drug–drug interactions, polypharmacy and associated risk factors has rarely been investigated involving people with ID at a population level. The purpose of this paper is to analyze the prevalence of polypharmacy and to evaluate the role of different factors associated with polypharmacy in a state-wide representative population of adults with ID. In a population-based survey in Victoria, Australia, 897 people with ID 18 years of age or older were selected by simple random sampling. The data were collected from proxy respondents on behalf of people with ID. Polypharmacy was defined as the concomitant use of five or more medications. The data were weighted to reflect the age/sex/geographic distribution of the population. Results revealed that more than 76% of adults with ID had used prescribed medicine and about 21% were exposed to polypharmacy in the last two weeks. In both univariate and multivariate analyses, polypharmacy was significantly associated with older age, unemployment and inability to get help from family and friends if needed. After controlling for age, sex and severity of intellectual disability, polypharmacy was associated with having a blood pressure, blood cholesterol and blood glucose level check. Polypharmacy was also associated with a greater number of visits to general practitioners, fair or poor reported health status and inability to walk unaided. Subjects with epilepsy, diabetes, stroke, osteoporosis and cancer had a higher probability of polypharmacy. None of the disease inducing behaviors was associated with polypharmacy. This study highlights the need that medication should be regularly reviewed overall in ID population and particularly when polypharmacy exists.     

Personal characteristics and contextual factors associated with residential expenditures for individuals with mental retardation

A multivariate analysis was done to determine the relative importance of facility, resident, and community characteristics to expenditures. Facility factors associated with higher expenditures included ownership, facility size, facility services, and location. Individuals with a greater number of activity of daily living limitations, developmental disabilities, and more severe levels of mental retardation had higher expenses. Findings could improve our understanding of the costs of long-term residential care, assisting us to economically and effectively bring this population into the community. Data used are from the 1987 National Medical Expenditure Survey Institutional Population Component.     

The acquisition of contextual cueing effects by persons with and without intellectual disability

Two experiments were conducted to compare the acquisition of contextual cueing effects of adolescents and young adults with intellectual disabilities (ID) relative to typically developing children and young adults. Contextual cueing reflects an implicit, memory based attention guidance mechanism that results in faster search for target locations that have been previously experienced in a predictable context. In the study, participants located a target stimulus embedded in a context of numerous distracter stimuli. During a learning phase, the location of the target was predictable from the location of the distracters in the search displays. We then compared response times to locating predictable relative to unpredictable targets presented in a test phase. In Experiment 1, all of the distracters predicted the location of the target. In Experiment 2, half of the distracters predicted the location of the target while the other half varied randomly. The participants with ID exhibited significant contextual facilitation in both experiments, with the magnitude of facilitation being similar to that of the typically developing (TD) children and adults. We concluded that deficiencies in contextual cueing are not necessarily associated with low measured intelligence that results in a classification of ID.     

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.     

Two unrelated girls with intellectual disability associated with a truncating mutation in the PPM1D penultimate exon

PPM1D truncating mutations in the last and penultimate exons of the gene have been associated with intellectual disability (ID) syndrome. Only 15 affected patients to-date have been reported with mild-to-severe ID, autistic behavior, anxiety and dysmorphic features. Here, we describe the clinical characteristics and underlying genetics of two unrelated girls with moderate developmental delay and dysmorphic features associated with novel mutations in PPM1D exon 5. The dysmorphic features demonstrated by these two patients are consistent with previously reported patients, including broad forehead, thin upper lip, brachydactyly, and hypoplastic nails. We identified a de novo PPM1D mutation in exon 5 of each patient (c.1250_1251insACCA p.V419Tfs*16 and c.1256_1257insCAAG p.S421Qfs*14) by panel sequencing for 4,813 disease-related genes. Both patients also had frameshift mutations (at different positions) that resulted in the same estimated termination codon at 434. These additional reports add to the growing literature on PPM1D-associated ID syndrome and help delineate the clinical phenotype and genetic basis.     

The relationship among side effects associated with anti-epileptic medications in those with intellectual disability

Seizures are fairly common in those with intellectual disabilities. In order to treat these seizures, antiepileptic drugs (AEDs) are often used and in many cases are effective. However, these medications often create a variety of associated side effects. In order to monitor these side effects, measures such as the SEIZES-B have been used. While many side effects have been found to occur with the use of AEDs, research has not explored if certain side effects are more likely to co-occur. For the current study, 281 people with intellectual disability were administered the SEIZES-B to monitor side effects associated with AEDs. Correlations between side effect subscales were then computed. Several subscales were found to be significantly correlated: hepatic disturbance with dermatological changes and cognitive disturbance; respiratory disturbance with dermatological changes, sedation, and electrolyte disturbance; and cognitive disturbance with sedation and dermatological disturbance. Possible implications of these findings are discussed.     

万州中学生网络成瘾现状的调查

目的：调查网络成瘾在重庆万州中学生之中的发生率;研究网络成瘾者情绪问题、心理卫生问题和人格特征。方法：采用网络一般使用问卷、网络成瘾诊断问卷、儿童焦虑性情绪障碍筛选表（SCAEED）、并用长处和困难问卷（SDQ）及艾森克个性问卷（EPQ）对4703名重庆万州9所学校内初一、高一、职业学校一年级中学生进行评估。结果：网络成瘾比例3．5％,网络成瘾者存在特定的人格特征,其焦虑情绪明显高于非成瘾者;男性成瘾比例高于女性。结论：网络成瘾行为与情绪状态和性别密切相关,严重影响学习和社会功能,网络成瘾者存在特定的人格特征,需要社会心理干预。     

Caring for a family member with intellectual disability and epilepsy: Practical,social and emotional perspectives

PurposeTo examine the caregiving impact of those who support a family member with intellectual disability and epilepsy.MethodsAn online, qualitative international survey was conducted via the auspices of the International Bureau of Epilepsy with various stakeholders who support individuals who have intellectual disability and epilepsy. Qualitative comments were analyzed from respondents who identified themselves as family members (n = 48; 36%) who referred specifically to the impact of supporting a family member with these combined disabilities.ResultsFour main domains, which were comprised of ten themes, were derived from the qualitative data using Braun and Clarke's qualitative framework. These domains comprised (1) practical concerns, (2) disrupted family dynamics, (3) emotional burden and (4) positive experiences. In combination these themes illustrate the pervasive impact on family life for those supporting an individual with complex needs. Financial concerns, coordination and responsibility of care, diverted attention from other family members and social isolation all contributed a significant burden of care for family members. Positive aspects were, however, also cited including the closeness of the family unit and a fostering of altruistic behavior.ConclusionThe study provides an insight into an under-researched area. The burden of caring for a family member across the lifespan has a largely negative and pervasive impact. Targeted service provision could contribute to an amelioration of the challenges faced by these families.     

Long-term neurological outcome in children with early-onset epilepsy associated with tuberous sclerosis

In tuberous sclerosis complex, early seizure onset is associated with high risk of intractable epilepsy and cognitive/behavioral impairment. We retrospectively evaluated the long-term outcome of 44 infants presenting with seizures in the first 12 months who received vigabatrin, and were followed up for at least 3.5 years. At the final evaluation 55% of patients were still having seizures, 80% had intellectual disability, and 30% had autism. Sixty-five percent of children who had been treated earlier with vigabatrin after seizure onset achieved seizure freedom, compared with 24% of subjects who received vigabatrin treatment later (P < 0.01). Intellectual disability was present in 61% of the children treated early (group A) and in 100% of the children treated later (group B). Nine percent of group A and 52% of group B had autism (P ≈ 0.001).A shorter gap between seizure onset and start of treatment could reduce the risk of epileptic encephalopathy, minimizing the deleterious effect of seizures, but is not able to completely reverse the tuberous sclerosis complex-associated cognitive impairment.     

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.     

The relationship between school environment and participation for students with disabilities

The aim of this study was to investigate the relationship between participation in school activities of students with disabilities and their school environment. Children and youths with disabilities rated their own participation in school activities while teachers and special education counsellors rated the student's school environment. Statistical methods used in this study were the Pearson's correlation coefficient and one-way-ANOVA. The results revealed that neither the amount of support given nor the general school environment was statistically related to students’ participation. Further, the individual's specific environment, especially when rated as availability to activities by the students themselves, was related to students’ participation. This might indicate that when investigating important environmental factors related to participation, students’ own perceptions of his/her niches is important to investigate. The support students were given related more to type and number of disabilities than to students’ participation.     

Psychiatric disorders and characteristics of abuse in sexually abused children and adolescents with and without intellectual disabilities

The purpose of this study was to compare sexually abused children and adolescents, with and without intellectual disabilities (ID), in terms of post-abuse psychiatric disorders, features of the sexual abuse, and sociodemographic characteristics. The study included sexually abused children aged 6–16 years, who were sent to three different child mental health units for forensic evaluation; there were 102 cases (69 girls and 33 boys) with ID and 154 cases (126 girls and 28 boys) without ID. Researchers retrospectively examined the files, social examination reports, and the judicial reports of the cases. It was determined that in the group with ID, sexual abuse types including penetration and contact had higher rates, they were exposed to more frequent repeated abuses, the abuses were revealed with their own reports at a later period and lower rates, and post-abuse pregnancies were more frequent. It was also determined that the abuser was a familiar person and a family member at lower rates and more than one abuser was encountered more frequently, compared to the group without ID. While no difference was determined between the two groups in terms of the frequency of post-abuse post-traumatic stress disorder (PTSD) and major depressive disorder (MDD), conduct disorder (CD) was observed more frequently in the group with ID. This study emphasizes that sexual abuse, which is an important problem in individuals with ID, has different features and effects.     

Psychopathology in Adults with Autism and Intellectual Disability

There have been few studies of psychopathology in adult with autism. This study examined psychiatric co-morbidity in 147 adults with intellectual disability (ID) and autism and 605 adults with ID but without autism. After controlling for the effects of gender, age, psychotropic medication and level of ID, people with autism and ID were no more likely to receive a psychiatric diagnosis than people with ID only. People with autism were less likely to receive a diagnosis of personality disorder. These findings cast doubts on the hypothesis that adults with ID and autism are more vulnerable to certain psychiatric disorders than non-autistic adults with ID.     

Enhancing staff attitudes, knowledge and skills in supporting the self-determination of adults with intellectual disability in residential settings in Hong Kong: a pretest–posttest comparison group design

Background The ecological perspective recognizes the critical role that is played by rehabilitation personnel in helping people with intellectual disability (ID) to exercise self‐determination, particularly in residential settings. In Hong Kong, the authors developed the first staff training programme of its kind to strengthen the competence of personnel in this area. The purpose of this study was to examine the effectiveness of staff training in enhancing residential staff's attitudes, knowledge and facilitation skills in assisting residents with ID to exercise self‐determination. Methods A pretest–posttest comparison group design was adopted. Thirty‐two participants in an experimental group attended a six‐session staff training programme. A 34‐item self‐constructed scale was designed and used for measuring the effectiveness of the staff training. Results The results showed that the experimental group achieved statistically significant positive changes in all domains, whereas no significant changes were found in the comparison group. Conclusions The findings provided initial evidence of the effectiveness of staff training that uses an interactional attitude–knowledge–skills model for Chinese rehabilitation personnel. The factors that contributed to its effectiveness were discussed and recommendations for future research were made.     

Severe autosomal dominant nocturnal frontal lobe epilepsy associated with psychiatric disorders and intellectual disability

Autosomal dominant nocturnal frontal lobe epilepsy (ADNFLE) is a relatively benign epilepsy syndrome with few comorbidities. Here we describe two families with unusually severe ADNFLE, with associated psychiatric, behavioral, and cognitive features. Detailed clinical data on 17 affected individuals were obtained, and genotyping of microsatellite markers, linkage analysis, and sequencing of candidate genes was performed. The severe ADNFLE phenotype in these families was often refractory to treatment, with status epilepticus occurring in 24% of subjects. Psychiatric or behavioral disorders occurred in 53%, with intellectual disability in 24%, and developmental regression in two individuals. No mutations were identified in alpha4, alpha2, or beta2 nAChR subunits. In one family there was evidence of linkage to a region of 15q24 without nAChR subunit genes. In conclusion, severe ADNFLE has significant medical, psychiatric, and intellectual morbidity. The molecular basis of severe ADNFLE is unknown but may involve non-nAChR-related mechanisms.