Life satisfaction of people with intellectual disability living in community residences: perceptions of the residents, their parents and staff members

Background Within the literature on quality of life (QoL), life satisfaction (LS) has emerged as a key variable by which to measure perceived well‐being, which is referred to as subjective QoL. The LS self‐reports of 93 residents with intellectual disability (ID) living in community‐based residences were compared with reports about their LS completed by their staff and parents. Method The residents were interviewed on their LS by social workers who did not belong to the staff of the interviewee's residence. The instrument used was the Life Satisfaction Scale (LSS). Staff and parents completed the short version of the LSS. Results Residents and staff's LS reports were positively correlated. However, significant differences were found between these two groups of informants when the residents were characterized as high functioning, had a low score in challenging behaviour, worked in an integrative employment setting and lived in an apartment. As opposed to staff/resident discrepancies, no differences were found between parents’ and residents’ LS reports. Conclusions If residents cannot to be interviewed about their LS, then the parent is the preferred person to respond on behalf of the resident. The current study highlights the importance of including both objective measures (e.g. functional assessment characteristics) and subjective measures (e.g. LS) in order to get a better understanding of the QoL of people with ID.     

An Exploratory Factor Analysis and Construct Validity of the Resident Choice Assessment Scale With Paid Carers of Adults With Intellectual Disabilities and Challenging Behavior in Community Settings

Introduction: The Resident Choice Assessment Scale (RCAS) is used to assess choice availability for adults with intellectual disabilities (ID). The aim of the study was to explore the factor structure, construct validity, and internal consistency of the measure in community settings to further validate this tool. Method: 108 paid carers of adults with ID living in supported accommodation and residential care facilities in urban, rural, and semirural areas in England completed the RCAS. Exploratory factor analyses were performed and the construct validity and internal consistency of the emerging factors were assessed. Results: Principal axis factoring with oblique rotations suggested a scale with two factors (Everyday Choices and Participation in Household Activities) which explained 45% of the variance; the factors showed favorable construct validity as they identified significant differences between those living in residential care homes compared with supported living; the factors also differentiated between people with different levels of intellectual impairment with less choice and participation in domestic activities for those with more severe ID compared to their counterparts with moderate and mild impairment. Five items did not load onto any factor, suggesting that these could be dropped from the scale when administered in community settings, thus resulting in an 18-item measure (RCAS-18). Conclusion: The RCAS-18 may provide a useful measure to assess choice availability for people with ID supported by paid carers in the community. The revised measure may be more suitable in capturing choice than the original version for use in community samples.     

The response to challenging behaviour by care staff: emotional responses, attributions of cause and observations of practice

Background Previous studies have attempted to apply Weiner's attributional model of helping behaviour to care staff who work with service users with intellectual disabilities and challenging behaviours by using studies based on vignettes. The aims of the current study were to investigate the application of Weiner's model to ‘real’ service users with intellectual disabilities and challenging behaviours and to observe the care staff's actual responses to challenging behaviours displayed by service users. Also, to compare care staff attributions, emotions, optimism, willingness to help and observed helping behaviours for self‐injurious behaviours in comparison to other forms of challenging behaviours. Method A total of 27 care staff completed two sets of measures, one set regarding a self‐injurious behaviour and the other regarding other forms of challenging behaviour. An additional 16 staff completed one set of measures. The measures focused on care staff attributions, emotions, optimism and willingness to help. Also, 16 of the care staff were observed interacting with the service users to collect data regarding their responses to challenging behaviours. Results For both self‐injurious behaviours and other forms of challenging behaviour, associations were found between the care staff internal, stable and uncontrollable attribution scores and care staff negative emotion scores. However, no associations were found between the care staff levels of emotion, optimism and willingness to help. Some associations were found between the care staff levels of willingness to help and observed helping behaviours. There were significant differences between the care staff attribution scores with higher scores being obtained for uncontrollable and stable attributions for other forms of challenging behaviours. No significant differences were found between the care staff emotions, optimism, willingness to help and observed helping behaviours. Conclusions The results did not provide support for Weiner's attributional model of helping behaviour. However, a preliminary model of negative care staff behaviour was derived from the exploratory analyses completed. This model proposes that there are associations between internal, stable and uncontrollable attributions and negative emotions in care staff and also between negative emotions and negative behaviours displayed by care staff in response to the actions of service users.     

Phenotypic spectrum and genetics of SCN2A‐related disorders,treatment options,and outcomes in epilepsy and beyond

Pathogenic variants in the SCN2A gene are associated with a variety of neurodevelopmental phenotypes, defined in recent years through multicenter collaboration. Phenotypes include benign (self‐limited) neonatal and infantile epilepsy and more severe developmental and epileptic encephalopathies also presenting in early infancy. There is increasing evidence that an important phenotype linked to the gene is autism and intellectual disability without epilepsy or with rare seizures in later childhood. Other associations of SCN2A include the movement disorders chorea and episodic ataxia. It is likely that as genetic testing enters mainstream practice that new phenotypic associations will be identified. Some missense, gain of function variants tend to present in early infancy with epilepsy, whereas other missense or truncating, loss of function variants present with later‐onset epilepsies or intellectual disability only. Knowledge of both mutation type and functional consequences can guide precision therapy. Sodium channel blockers may be effective antiepileptic medications in gain of function, neonatal and infantile presentations.     

Responsiveness to staff support: evaluating the impact of individual characteristics on the effectiveness of active support training using a conditional probability approach

Background Active support training was fully conducted in 38 community houses accommodating 106 adults with intellectual disabilities (ID; group 1), but not in a further 36 accommodating 82 adults with ID (group 2). The aims of the present study were to analyse whether staff became more effective in supporting resident activity after the implementation of active support, and whether there was evidence of differential responsiveness by people with differing status in relation to adaptive behaviour, psychiatric diagnosis, challenging behaviour or autism. Methods Observations of staff:resident interaction and resident engagement in activity were taken before and after active support training. Changes in Yule's Q statistics, indicating the likelihood that resident engagement in activity followed staff giving residents verbal instruction or non‐verbal assistance, were compared for the two groups. In addition, changes in similar statistics were compared for residents within group 1: (1) with Adaptive Behaviour Scale (ABS) scores above and below 180; and (2) with and without severe challenging behaviour, the triad of social impairments and mental illness. Results Yule's Q for engagement given non‐verbal assistance significantly increased post‐training among group 1, but not among group 2. Similar significant increases were found among group 1 residents with ABS scores below 180 without challenging behaviour, with and without the triad of social impairments, and without mental illness, but not with an ABS score above 180, with challenging behaviour and with mental illness. Conclusion The present analysis reinforces previous studies on the effectiveness of active support training for adults with more severe ID (i.e. with ABS scores below 180). Active support was as effective for people with the triad of social impairments as for those without it. However, the effectiveness of support offered to people with challenging behaviour or mental illness did not significantly increase.     

Working with sex offenders with intellectual disability: evaluation of an introductory workshop for direct care staff

Background Sexual aggression by men with intellectual disability (ID) is a serious problem requiring attention from the relevant agencies. Training for staff working with this problem is often not given sufficient attention and is rarely evaluated. In the present study, an introductory workshop for direct care staff that aimed to increase knowledge and improve attitudes towards work with this client group was evaluated. Method Sixty‐six staff working in inpatient and community settings completed a 2.5‐day workshop. Before training began, the participants completed a survey questionnaire concerning their experiences of work with this client group. An assessment of their knowledge and attitudes was carried out prior to and at the end of training in order to evaluate any changes. The participants also rated the effectiveness of the workshop and their level of satisfaction with the training at the end of the workshop. Results The participant s’ knowledge and attitudes improved significantly following the workshop. Staff with greater experience over time and those who had worked with fewer sex offender clients responded to different aspects of the training. The participants’ ratings indicated that they were highly satisfied with the training and found it to be effective. Conclusions Brief workshop training is acceptable to and can be effective in improving the knowledge, attitudes and confidence of direct care staff working with sex offenders with ID. However, because the results are based on participant self‐report, caution should be exercised concerning their external validity.     

Psychopharmacological treatment of challenging behaviours in adults with autism and intellectual disabilities: A systematic review

IntroductionAutism is a neurodevelopmental disorder with a high co-occurrence with intellectual disability. Adults with Autism and intellectual disability have a high incidence of challenging behaviour, defined as repetitive self injurious or aggressive behaviour. We underwent a systemic review of the evidence for treating challenging behaviours in adults with Autism and intellectual disability.MethodsA literature search was conducted using three large databases to extract studies on the treatment of challenging behaviour among adults with Autism and intellectual disability. Papers, which met this criterion, were reviewed and analysed to assess study evidence and quality.ResultsSeven articles were selected which included five agents: fluvoxamine, sertraline, clomipramine, risperidone, and ziprasidone. Randomized control studies of fluvoxamine and risperidone, provided efficacy for the treatment of challenging behaviour in adults with Autism and intellectual disability. Open label trials of sertraline, clomipramine and ziprasidone were also effective in treating challenging behaviours for this population.DiscussionRisperidone and fluvoxamine provided the best evidence for treating challenging behaviour, and risperidone was the only medication with multiple trials showing its efficacy. Further studies are required to demonstrate the efficacy of psychopharmacology in treating challenging behaviours among adults with Autism and intellectual disability.     

The relationship between levels of mood, interest and pleasure and 'challenging behaviour' in adults with severe and profound intellectual disability

Background Research on affective disorders in adults with intellectual disability (ID) suggests that depression may not present a ‘classic picture’ in individuals with severe and profound ID, but may include challenging behaviours, which are referred to as ‘atypical symptoms’, such as self‐injury, aggression and irritability. The aim of the present study was to explore whether there is an association between constructs relating closely to the core symptoms of depression and challenging behaviours in adults with severe and profound ID. Method Mood and levels of interest and pleasure were measured in 53 adults with severe or pro‐found ID using the Mood, Interest and Pleasure Questionnaire (MIPQ). Results Two groups of adults were identified based on MIPQ scores: (1) a ‘low mood’ group (lowest score = 12); and (2) a comparison group (highest scoring = 12). The groups were clearly differentiated on the MIPQ (P < 0.0001), but were comparable on age, gender and medication use. The Challenging Behaviour Interview showed no difference between the two groups in self‐injury, aggression or disrupting the environment. A secondary analysis revealed that participants who showed challenging behaviour scored significantly lower on the MIPQ than those who did not show challenging behaviour. Conclusions Possible reasons for these results and considerations for future studies are discussed.     

Behavioural knowledge, causal beliefs and self-efficacy as predictors of special educators' emotional reactions to challenging behaviours

Background Theoretical models and emerging empirical data suggest that the emotional reactions of staff to challenging behaviours may affect their responses to challenging behaviours and their psychological well‐being. However, there have been few studies focusing on factors related to staff emotional reactions. Methods Seventy staff working in educational environments with children with intellectual disability and/or autism completed a self‐report questionnaire that measured demographic factors, behavioural causal beliefs, behavioural knowledge, perceived self‐efficacy, and emotional reactions to challenging behaviours. Results Regression analyses revealed that behavioural causal beliefs were a positive predictor, and self‐efficacy and behavioural knowledge were negative predictors of negative emotional reactions to challenging behaviours. Staff with formal qualifications also reported more negative emotional reactions. No other demographic factors emerged as significant predictors. Conclusions The results suggest that behavioural causal beliefs, low self‐efficacy and low behavioural knowledge may make staff vulnerable to experiencing negative emotional reactions to challenging behaviours. Researchers and clinicians need to address these issues in staff who work with people with challenging behaviours.     

Predictors of admission to a high-security hospital of people with intellectual disability with and without schizophrenia

Admission to secure hospital facilities is a rare outcome for people with intellectual disability with or without concomitant psychosis. The present study compares people with mild intellectual disability with and without schizophrenia resident in the Scottish and Northern Irish State Hospital, Carstairs, to matched mild intellectual disability controls, also with and without schizophrenia, in the community. It is hoped that this study may identify socio‐demographic, clinical or historical predictors which may lead to admission to secure hospital facilities for people with mild intellectual disability. One hundred and eight subjects were identified from two previous studies which concerned State Hospital patients and patients with intellectual disability with and without schizophrenia. Four experimental groups were derived: (1) 14 individuals with comorbid intellectual disability and schizophrenia who had been resident in the State Hospital; (2) 34 comorbid community control subjects; (3) 33 individuals with intellectual disability and no psychosis who had been resident in the State Hospital; and (4) 27 community control subjects with mild intellectual disability. The four groups were compared on a range of socio‐demographic, historical and clinical variables obtained from case records and subject interviews. Relative to community controls, people with intellectual disability and no psychosis in the State Hospital are likely to be single, to have a later age of first psychiatric hospital admission, and to have a history of previous suicide attempts, alcohol abuse or drug misuse. Subjects with comorbid intellectual disability and schizophrenia in the State Hospital are more likely to be male, to have an early age of first psychiatric admission, and to have no family history of either schizophrenia or intellectual disability. Strategies aimed at addressing suicidal behaviour, alcohol and drug misuse amongst people with intellectual disability may facilitate a reduction in the number of admissions to high‐security hospitals in the UK. In people with comorbid intellectual disability and schizophrenia, males with an early age of onset and no known family history are more likely to require care and treatment in a secure psychiatric setting. Such comorbid subjects may be suffering from a particular malignant form of schizophrenia, manifesting in childhood as cognitive impairment prior to the early onset of psychosis in teenage years.     

Choice-making among Medicaid HCBS and ICF/MR recipients in six states

Choice in everyday decisions and in support-related decisions was addressed among 2,398 adults with intellectual and developmental disabilities receiving Medicaid Home and Community Based Services (HCBS) and Intermediate Care Facility (ICF/MR) services and living in non family settings in six states. Everyday choice in daily life and in support-related choice was considerably higher on average for HCBS than for ICF/MR recipients, but after controlling for level of intellectual disability, medical care needs, mobility, behavioral and psychiatric conditions, and self-reporting, we found that choice was more strongly associated with living in a congregate setting than whether that setting was HCBS- or ICF/MR-financed. Marked differences in choice were also evident between states.     

Cyberbullying among students with intellectual and developmental disability in special education settings

Objective: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings.

Methods: Students (n = 114) with intellectual and developmental disability who were between 12–19 years of age completed a questionnaire containing questions related to bullying and victimization via the internet and cellphones. Other questions concerned sociodemographic characteristics (IQ, age, gender, diagnosis), self-esteem and depressive feelings.

Results: Between 4–9% of students reported bullying or victimization of bullying at least once a week. Significant associations were found between cyberbullying and IQ, frequency of computer usage and self-esteem and depressive feelings. No associations were found between cyberbullying and age and gender.

Conclusions: Cyberbullying is prevalent among students with intellectual and developmental disability in special education settings. Programmes should be developed to deal with this issue in which students, teachers and parents work together.     

Autonomy in relation to health among people with intellectual disability: a literature review

Background Since the 1990s, individualisation, participation, normalisation and inclusion have been the main principles of care for people with intellectual disability (ID). Autonomy has become an important issue for these people. This review of the literature tried to answer the question: how do people with ID exercise autonomy in relation to health? Method Searches in Cochrane, Medline and PsycINFO were based on the following aspects of autonomy: self‐determination, independence, self‐regulation and self‐realisation. Results Thirty‐nine of 791 articles met our criteria, including 14 on self‐determination, seven on independence, 15 on self‐regulation and three on self‐realisation. Conclusions In spite of decades of promoting autonomy, the exercise of autonomy in relation to health has so far rarely been an issue in the literature.     

Stereotypic movement disorder: easily missed

Aim To expand the understanding of stereotypic movement disorder (SMD) and its differentiation from tics and autistic stereotypies. Method Forty‐two children (31 males, mean age 6y 3mo, SD 2y 8mo; 11 females, mean age 6y 7mo, SD 1y 9mo) consecutively diagnosed with SMD, without‐self‐injurious behavior, intellectual disability, sensory impairment, or an autistic spectrum disorder (ASD), were assessed in a neuropsychiatry clinic. A list of probe questions on the nature of the stereotypy was administered to parents (and to children if developmentally ready). Questionnaires administered included the Stereotypy Severity Scale, Short Sensory Profile, Strengths and Difficulties Questionnaire, Repetitive Behavior Scale – Revised, and the Developmental Coordination Disorder Questionnaire. The stereotyped movement patterns were directly observed and in some cases further documented by video recordings made by parents. The probe questions were used again on follow‐up at a mean age of 10 years 7 months (SD 4y 4mo). Results Mean age at onset was 17 months. Males exceeded females by 3:1. Family history of a pattern of SMD was reported in 13 and neuropsychiatric comorbidity in 30 (attention‐deficit–hyperactivity disorder in 16, tics in 18, and developmental coordination disorder in 16). Obsessive–compulsive disorder occurred in only two. The Short Sensory Profile correlated with comorbidity (p<0.001), the Stereotypy Severity Scale (p=0.009), and the Repetitive Behavior Scale (p<0.001); the last correlated with the Stereotypy Severity Scale (p=0.001). Children (but not their parents) liked their movements, which were usually associated with excitement or imaginative play. Mean length of follow‐up was 4 years 8 months (SD 2y 10mo). Of the 39 children followed for longer than 6 months, the behavior stopped or was gradually shaped so as to occur primarily privately in 25. Misdiagnosis was common: 26 were initially referred as tics, 10 as ASD, five as compulsions, and one as epilepsy. Co‐occurring facial grimacing in 15 children and vocalization in 22 contributed to diagnostic confusion. Interpretation SMD occurs in children without ASD or intellectual disability. The generally favorable clinical course is largely due to a gradual increase in private expression of the movements. Severity of the stereotypy is associated with sensory differences and psychopathology. Differentiation of SMD from tics and ASD is important to avoid misdiagnosis and unnecessary treatment.     

Cerebral dominance and schizophrenia-spectrum disorders in adults with intellectual disability

Studies of the general population without intellectual disability have suggested an association between atypical handedness and schizophrenia‐spectrum disorders (SSDs). Mixed handedness is taken as an index of diminished cerebral dominance or laterality. The present study addressed the question of whether such findings extend to the neurodevelopmentally ‘at risk’ population of adults with intellectual disability and SSDs compared with appropriate controls. Fourteen patients with a dual diagnosis of intellectual disability and SSD were compared with 14 controls with intellectual disability alone. Assessments of self‐reported hand preference and relative hand skill were completed. Self‐report of hand preference revealed highly significantly greater mixed‐handedness in the SSD group. Furthermore, relative hand skill performance was significantly diminished for the dominant hand. The discrepancy between dominant and non‐dominant hand functioning was lower in the SSD group and this association was highly significant. The results of the present study support the usefulness of such detailed laterality assessment in this population. Mixed laterality, over and above that of the population with general intellectual disability and developmental disorder, was associated with SSD. These results are consistent with the neurodevelopmental hypothesis of schizophrenia and its cognitive neuropsychiatric/neuropsychological sequelae.     

Enhanced self-determination of adults with intellectual disability as an outcome of moving to community-based work or living environments

In recent years, the self‐determination construct has received increased international visibility and utilization in the field of intellectual disability (ID). This has resulted in efforts to promote skills enhancing self‐determination, and in efforts to change how adult services are funded to allocate resources to increase consumer control and direction. An important component to consider in both of these efforts is the role of the environment on self‐determination. The present study examined the self‐determination, autonomy and life choices of individuals with ID before and after they moved from a more restrictive work or living environment. The self‐determination of adults with ID was measured for an average 6‐months before and after a move from a more restrictive living or working environment to a community‐based setting. Paired‐sample t‐tests indicated that there were significant changes, in each case in a more adaptive direction, in self‐determination, autonomous functioning and life choices following a move to a less restrictive environment. The present findings contribute to emerging evidence that the self‐determination of individuals with ID is limited by congregate living or work settings which limit opportunities for choice and decision‐making. Alternatively, more normalized, community‐based environments support and enhance self‐determination. Because self‐determination has been linked to positive adult outcomes and enhanced quality of life, it is important to consider ways to enable people with ID to live and work in their communities.     

Challenging behaviours should not be considered as depressive equivalents in individuals with intellectual disability

Background Depression is one of the most common forms of psychopathology in people with intellectual disability (ID). The present study evaluated the utility of an expanded assessment of psychiatric symptoms and challenging behaviours, as measured by the Clinical Behavior Checklist for Persons with Intellectual Disabilities (CBCPID). Methods The CBCPID was administered to 92 people with ID, 35 of whom were diagnosed with a depressive disorder. Results Item and factor analysis of the scale indicated that depression was best assessed using the core DSM‐IV symptoms of depressive disorder. Challenging behaviours such as self‐injury or aggression were not closely associated with depression. Short scales using the core DSM‐IV symptoms of depression were highly internally consistent. There was also evidence of the validity of these scales. Conclusions This study found no evidence that challenging behaviours were depressive equivalents in this population. The present authors conclude that the assessment of depression in people with ID should focus on the core DSM‐IV symptoms of depression.     

Self-assessment of relationships with peers in children with intellectual disability

Interaction with peers is important for the development of children, but children with special needs may feel rejected by their peers. The present study examines self‐assessment of relationships with peers by children with intellectual disability (ID; n = 20) and children from the general population (n = 20). All participants attended a regular primary school and were aged between 7 and 10.5 years; both sexes were represented in the samples. The Behavior Rating Profile was applied. The results of the children with ID on the ‘Student Rating Scale: Peers’ did not show statistically significant differences from the results of children from general population, with both groups responding similarly to the self‐perception scale. However, the sociometric results obtained from their peers clearly show that children with ID are not accepted by their classmates. Peers frequently and more often refuse to study, sit together in class or socialize after classes with children with ID than is the case for children without ID. Despite the high frequency of rejection, it is concluded that children with ID of younger primary school age have average confidence in their own abilities and in the success of their relationships with their peers. Further education among the children who reject them could have a negative impact on their self‐esteem.     

Mothers' expressed emotion towards children with and without intellectual disabilities

Objectives To identify factors associated with maternal expressed emotion (EE) towards their child with intellectual disability (ID). Design and method A total of 33 mothers who had a child with ID and at least one child without disabilities between the ages of 4 and 14 years participated in the study. Mothers completed self‐assessment questionnaires which addressed their sense of parenting competence, beliefs about child‐rearing practices, and their reports of behavioural and emotional problems of their child with ID. Telephone interviews were conducted to assess maternal EE towards the child with ID and towards a sibling using the Five Minute Speech Sample (FMSS; Magana et al. 1986 ), and also to assess the adaptive behaviour of the child with ID using the Vineland Adaptive Behaviour Scale (VABS; Sparrow et al. 1984 ). Results Mothers with high EE towards their child with ID were more satisfied with their parenting ability, and their children had more behaviour problems. Analysis of differential maternal parenting, through comparisons of EE towards their two children, showed that mothers were more negative towards their child with ID for all domains of the FMSS except dissatisfaction. Conclusions A small number of factors associated with maternal EE towards children with ID were identified. Differences in maternal EE towards their child with ID and their other child suggest that EE is child‐driven rather than a general maternal characteristic. Implications of the data for future research are discussed.     

Persistence of challenging behaviours in adults with intellectual disability over a period of 11 years

Background Challenging behaviours in people with an intellectual disability (ID) often develop early and tend to persist throughout life. This study presents data on the chronicity of challenging behaviours in adults with ID over a period of 11 years, and explores the characteristics of people with persistent serious behaviour problems. Method Support staff provided data on 58 adults living in a long‐term residential facility using an interview survey schedule assessing challenging behaviours in 1992 and 2003. Results Participants presenting with serious physical attacks, self‐injury and frequent stereotypy were the most likely to persist in these behaviours over time. These behaviours were characterised by high persistence percentages and associations over time. However, the earlier presence of serious challenging behaviours did not significantly affect the likelihood of serious challenging behaviours in 2003. Individuals with persisting behaviour problems differed from those who did not present serious behaviour problems on the basis of their younger age, increased mobility, and decreased sociability and daily living skills in 1992. Conclusions Estimates of persistence for challenging behaviours are affected by the statistics chosen to represent stability. The apparent persistence of serious challenging behaviours highlights the need to identify the factors related to maintenance of these behaviours over time. The participant characteristics and adaptive behaviours identified in the present study were not consistently related to the persistence of challenging behaviours. Therefore, other factors, including environmental characteristics, are likely to be related to challenging behaviour persistence.