bluuebunny/crossref_metadata_2025_split huggingface dataset:
Causal explanations, concern and optimism regarding self‐injurious behaviour displayed by individuals with Cornelia de Lange syndrome: the parents' perspective
Authors: Hyman P. , Oliver C. 
Published: March 2003

AbstractResearch into behaviours associated with specific syndromes, such as Cornelia de Lange syndrome (CdLS), has neglected to explore the parents' perspective, particularly the potential impact of the notion of behavioural phenotypes on parents' causal explanations. Given the research focus on self‐injurious behaviour (SIB) in CdLS, the present study examined parental concern across four topographies of challenging behaviour, causal explanations for these behaviours and optimism for change. As part of a larger study, a questionnaire survey of 86 parents of children and adults with CdLS was conducted. Quantitative data on parental concern and optimism with regard to behaviour problems were collected. Causal explanations for behaviour problems were examined by subjecting open‐ended responses to a content analysis. Parents were as concerned about physical aggression and disruptive behaviours as they were about SIB. The majority of parents had deconstructed how CdLS might be associated with SIB in terms of other factors associated with CdLS, such as degree of intellectual disability. Parents did not believe that CdLS influenced SIB more than other challenging behaviours and their beliefs did not effect optimism regarding future change in the behaviour. Despite the focus of research on SIB in CdLS, parents of children and adults with CdLS are also concerned about other challenging behaviours. There was no evidence that a deterministic perspective had been adopted by parents and causal explanations were unrelated to optimism for future change.
Effect of unexpected outcomes and causal attributions on key workers' expectancies of goal attainment
Authors: Stanley B. , Standen P. J. 
Published: March 2003

AbstractGoal planning is an integral part of the role of the key worker in services for people with intellectual disability. The present study investigated the effect of the Weiner stability–expectancy principle on unexpected outcomes in goal planning. Four hundred and twenty‐two actual goal attainment scales were constructed, with each scale describing the key workers' expected levels of outcome. Two hundred and twenty‐six (54%) unexpected outcomes, both successful and unsuccessful, were then rated by key workers to provide a causal explanation for each outcome. These explanations were then grouped according to whether the attributions represented stable or variable causes. Finally, key workers were asked to provide a new expectancy rating to forecast future goal attainment. Two predictions from Weiner's model were confirmed by statistical analysis: (1) that success attributed to stable factors would lead to higher revised forecasts of goal attainment than success attributed to variable factors; and (2) that failure attributed to stable factors would lead to lower revised forecasts of goal attainment than failure attributed to variable factors. The results of the present study confirm that stability attributions do alter key workers' revised forecasts of goal attainment. The results are discussed in terms of the possible consequences for key worker behaviour, such as goal abandonment, differential treatment of service users and the need for a knowledgeable approach to performance appraisal by managers.
Enhanced self‐determination of adults with intellectual disability as an outcome of moving to community‐based work or living environments
Authors: Wehmeyer M. L. , Bolding N. 
Published: March 2003

AbstractIn 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.
Mental disorder in adults with intellectual disability. 2: The rate of behaviour disorders among a community‐based population aged between 16 and 64 years
Authors: Deb, S. , Thomas M. , Bright C. 
Published: March 2003

AbstractDespite the difficulty of defining behaviour disorder, most previous studies have reported a high rate of behaviour disorders in people with intellectual disability (ID). The aim of the present study was to establish the overall rate and types of behaviour disorders in a population‐based sample of adults with ID. The other aim was to explore the possible risk factors that are associated with the overall rate as well as different types of behaviour disorders. One hundred and one adults with ID aged between 16 and 64 years were randomly selected from a sample of 246 such adults, i.e. those who were known to the Vale of Glamorgan Social Services Department in South Wales, UK. Thirteen behaviour disorders were rated according to the Disability Assessment Schedule. Background data on subjects were also collected, and were subsequently analysed to assess the relationship between different risk factors and behaviour disorders. Sixty‐one subjects (60.4%) had at least one behaviour disorder of any severity or frequency. Twenty‐three per cent of subjects showed aggression, 24% self‐injurious behaviour, 36% temper tantrum, 26% overactivity, 29% screaming, 38% attention‐seeking behaviour, 20% objectionable habits, 18% night‐time disturbance and 12% of subjects showed destructiveness. Statistically significant associations were seen between the rate of overall behaviour disorder and the use of psychotropic medication, and between family and group home residence. The rate of aggression was significantly associated with the use of psychotropic medication. The rate of self‐injurious behaviour was significantly associated with the severity of ID, female gender and poor communication abilities. The rate of temper tantrum was significantly associated with the use of psychotropic medication. Twenty‐four subjects showed severe or frequent aggression, destructiveness, self‐injury or temper tantrum, and 11 individuals showed real challenging behaviours. Severe behaviour problems were significantly associated with female gender, severity of ID, the presence of a history of epilepsy and attendance at day activities.
Behaviour/mental health problems in young adults with intellectual disability: the impact on families
Authors: McIntyre L. L. , Blacher J. , Baker B. L. 
Published: March 2003

AbstractBackground The present authors studied the impact of dual diagnosis [i.e. intellectual disability (ID) and mental disorder] in young adults on their mothers’ perceived levels of stress and decisions about placement.Methods The mothers of 103 young adults with severe ID were interviewed using a 2–3‐h in‐depth protocol of measures designed to assess their child’s adaptive functioning, maladaptive behaviour, mental health problems and negative impact on the family, as well as their own thoughts on out‐of‐home placement. The Scales of Independent Behavior – Revised Problem Behavior Scale assessed problem behaviours and the Reiss Screen assessed mental disorder.Results These measures were highly correlated (r = 0.64), but tapped some different domains of maladaptive behaviour and proved to be most predictive when employed together. Behaviour and/or mental health (B/MH) problems significantly predicted the mothers’ perceived negative impact of the young adult on the family, even after controlling for other young adult characteristics. These problems also predicted the family’s steps toward seeking out‐of‐home placement, as did better young adult health and the mother’s higher educational attainment; stress did not predict additional variance in placement once these variables were accounted for.Conclusions The discussion focuses on the implications for service provision to families of young adults with B/MH problems.
The potential of virtual reality in social skills training for people with autistic spectrum disorders
Authors: Parsons S. , Mitchell P. 
Published: March 2003

AbstractBackgroundPeople with autism experience profound and pervasive difficulties in the social domain. Attempts to teach social behaviours tend to adopt either a behavioural or a ‘theory of mind’ (ToM) approach. The beneficial aspects and limitations of both paradigms are summarized before an examination of how virtual reality technology may offer a way to combine the strengths from both approaches.MethodsThis is not an exhaustive review of the literature; rather, the papers are chosen as representative of the current understanding within each broad topic. Web of Science ISI, EMBASE and PsycInfo were searched for relevant articles.ResultsBehavioural and ToM approaches to social skills training achieve some success in improving specific skills or understanding. However, the failure to generalize learned behaviours to novel environments, and the unwieldy nature of some behavioural methodologies, means that there is a need for a training package that is easy to administer and successful in promoting learning across contexts.ConclusionsVirtual reality technology may be an ideal tool for allowing participants to practise behaviours in role‐play situations, whilst also providing a safe environment for rule learning and repetition of tasks. Role‐play within virtual environments could promote the mental simulation of social events, potentially allowing a greater insight into minds. Practice of behaviours, both within and across contexts, could also encourage a more flexible approach to social problem solving. Virtual environments offer a new and exciting perspective on social skills training for people with autistic spectrum disorders.
Autonomy and intellectual disability: the case of prevention of obesity in Prader–Willi syndrome
Authors: Hooren R. H. van , Widdershoven G. A. M. , Borne H. W. van den , Curfs L. M. G. 
Published: March 2003

AbstractBackgroundThe policy concerning care for people with intellectual disability (ID) has developed from segregation via normalization towards integration and autonomy. Today, people with ID are seen as citizens who need to be supported to achieve a normal role in society. The aim of care is to optimize quality of life and promote self‐determination. The promotion of autonomy for people with ID is not easy and gives rise to ethical dilemmas. Caregivers are regularly confronted with situations in which there is a conflict between providing good care and respecting the client's autonomy. This becomes evident in the case of prevention of obesity in people with Prader–Willi syndrome (PWS).MethodAs part of a study about the ethical aspects of the prevention of obesity, in‐depth qualitative interviews were conducted with the parents and professional caregivers of people with PWS.ResultsIn analysing interviews with parents and formal caregivers, the present authors found that the dichotomy between respecting autonomy and securing freedom of choice on the one hand, and paternalism on the other, is too crude to do justice to the process of care. The stories indicated that caregivers see other options and act in other ways than to intervene without taking into account the wishes of the individual with PWS. The present authors elaborated these options, taking models of the physician–patient relationship as a heuristic starting point. They extended the logic of these models by focusing on the character of the process of interaction between caregiver and care receiver, and on the emotional aspects of the interactions.ConclusionThis approach results in more attention to processes of interpretation, deliberation and joint learning.
Maladaptive behaviour in children and adolescents with Down's syndrome
Authors: Dykens E. M. , Shah B. , Sagun J. , Beck T. , King B. H. 
Published: March 2003

AbstractBackgroundAlthough children with Down's syndrome (DS) are at lower risk for psychopathology than others with intellectual disability, they do show more problems than typically developing children. However, age‐related trends in these problems remain unclear.MethodsThe present authors examined age‐related changes in the maladaptive behaviours of 211 children and adolescents with DS aged between 4 and 19 years (mean = 9.74 years). Most participants (n = 180) were recruited from families residing in the greater Los Angeles area, California, USA, while a minority (n = 31) were patients from a clinic specializing in the psychiatric management of people with DS. The participants were divided into four age groups: (1) 4–6 years, (2) 7–9 years, (3) 10–13 years and (4) 14–19 years.ResultsExternalizing behaviours were lower across both the community and clinic samples, while internalizing behaviours were significantly higher in older adolescents aged between 14 and 19 years. Increases were found in withdrawal, seen in 63% of community‐based adolescents, and 75% of clinic adolescents.ConclusionsOlder adolescents with DS may show decreased externalizing symptoms and subtle increases in withdrawal. Possible relationships are discussed between these shifts and increased risks of later‐onset depression and Alzheimer's disease in adults with DS.
A pilot study of the reliability and validity of the Caregiver Activity Survey – Intellectual Disability (CAS‐ID)
Authors: McCarron M. , Gill M. , Lawlor B. , Beagly C. 
Published: March 2003

AbstractBackground People with Down's syndrome (DS) are at increased risk of Alzheimer‐type dementia (AD) when compared to the general population. Despite AD being a serious progressive disorder, little attention has been paid to the impact of the illness on formal caregivers. In the general population, the Caregiver Activity Survey (CAS) is used to measure time spent by family caregivers assisting people with AD in their day‐to‐day activities of living. In order to plan appropriate models of health and social care effectively for people with AD and DS, it is imperative that the care requirements of individuals at different stages of dementia are realized. An amended version of this survey, the Caregiver Activity Survey – Intellectual Disability (CAS‐ID), was developed and tested for use by professional caregivers in the present study.Methods The CAS‐ID was administered to 30 people with DS and their caregivers. Convergent validity was tested by comparing the results of the CAS‐ID to other validated tests for cognitive and functional impairment in individuals with DS. Test–retest and inter‐rater reliability were investigated.Results The final version of the CAS‐ID consists of eight items: dressing, bathing/showering, grooming, toileting, eating and drinking, housekeeping, nursing care‐related activities, and supervision/ behaviour management. The scale had excellent test–retest reliability, and correlated strongly with the Down Syndrome Mental Status Examination (DSMSE; r = −0.770), the Test for Severe Impairment (TSI; r = −0.881) and the Daily Living Skills Questionnaire (DLSQ; r = −0.855).Conclusions The present authors provide preliminary evidence for the validity and reliability of the CAS‐ID. This instrument offers a means of identifying and measuring care and resources requirements as this population experiences symptoms of dementia. Such information may help assist healthcare professionals in planning supports and services to address the care challenges evidenced at different stages of the disease process.
A comparative study of mastery motivation in young children with Down's syndrome: similar outcomes, different processes?
Authors: Gilmore L. , Cuskelly M. , Hayes A. 
Published: March 2003

AbstractBackground  Findings from previous research into motivation in young children with Down's syndrome (DS) have been mixed. Some studies have suggested that development is merely delayed, while others have proposed that there are inherent differences or deficits. Using the mastery motivation paradigm, studies of young children have often found that those with DS are just as persistent and goal‐directed as typically developing children of the same mental age (MA). However, research involving children with DS with MAs above 2 years is very limited. The major aim of the present study was to extend previous research by focusing on children with MAs between 24 and 36 months. A secondary aim was to investigate issues which would advance conceptual knowledge about the construct of mastery motivation.Method  The participants were 25 children with DS and 43 typically developing children, matched for MA (24–36 months). The main measures of mastery motivation were persistence with structured mastery tasks (i.e. puzzles and shape‐sorters) and maternal reports.Results  With the challenging tasks, children with DS were just as persistent as the typically developing children. Correlations of persistence measures in the group with DS suggested that persistence for these children represented a more generalized approach rather than a task‐specific response. Maternal ratings of persistence were lower in the group with DS.Conclusions  The main conclusion was that children with DS in the MA range of 24–36 months do not differ in their persistence with challenging tasks when compared with typically developing children of the same MA. The implication is that motivational development is delayed for children with DS, rather than deficient. However, there were some indications of possible differences in the processes underlying mastery behaviour in the two groups. The study addresses a number of conceptual and methodological issues associated with mastery motivation research, and stresses the important contribution that future longitudinal studies could make.
Salbutamol inhalation has no effect on myocardial ischaemia, arrhythmias and heart‐rate variability in patients with coronary artery disease plus asthma or chronic obstructive pulmonary disease
Authors: Rossinen  , Partanen  , Stenius‐Aarniala  , Nieminen  
Published: March 2003

Rossinen J, Partanen J, Stenius‐Aarniala B, Nieminen MS (Helsinki University Central Hospital, Helsinki, Finland). Salbutamol inhalation has no effect on myocardial ischaemia, arrhythmias and heart‐rate variability in patients with coronary artery disease plus asthma or chronic obstructive pulmonary disease. J Intern Med 1998; 243: 361–66.ObjectivesInhaled beta‐2 agonists raise heart rate, systolic blood pressure and contractility, all of which cause an increase in oxygen consumption of the heart. We performed a study on the influ‐ ence of inhaled salbutamol on myocardial ischa‐emia, rhythm, and heart rate variability as assessed by Holter monitoring of 24 patients with coronary artery disease (CAD) and clinically stable asthma or chronic obstructive pulmonary disease (COPD).DesignIn hospital the patients received 0.2 mg (hour 1), 0.4 mg (hour 6), 0.8 mg (hour 13) of salbutamol with a metered‐dose inhaler and a spacer, and 5 mg (hour 25) with a nebulizer; symptoms, peak expiratory flow (PEF), 30‐h Holter monitoring, and blood pressure (BP) were recorded. The study parameters were compared for the hour preceding and following each dose of salbutamol.ResultsNo cardiac symptoms were associated with salbutamol inhalation. PEF increased after all doses (P < 0.005). A dose of 0.2 mg salbutamol induced no changes in heart rate, whereas dose of 0.4 mg increased heart rate from a mean of 75 ± 13 to 79 ± 14 beats min−1 (P < 0.005), and a dose of 0.8 mg from 76 ± 14 to 78 ± 15 beats min−1 (P < 0.05). No changes in systolic BP appeared after any dose of salbutamol. The diastolic BP was lowered after 0.8 mg of salbutamol from 86 ± 12 to 82 ± 10 mmHg (P < 0.05). The 5 mg of nebulized drug provoked no significant changes in heart rate or BP. Myocardial ischaemia, heart rate variability and ventricular arrhythmias remained unaltered with all doses.ConclusionsThe commonly used doses of inhaled or nebulized salbutamol induced no acute myocardial ischaemia, arrhythmias or changes in heart rate variability in patients with CAD and clinically stable asthma or COPD.
Factors associated with pre‐hospital and in‐hospital delay time in acute myocardial infarction: a 6‐year experience
Authors: Berglin Blohm  , Hartford  , Karlsson  , Herlitz  
Published: March 2003

Berglin Blohm M, Hartford M, Karlsson T, Herlitz J (Division of Cardiology, Sahlgrenska University Hospital, Göteborg, Sweden). Factors associated with pre‐hospital and in‐hospital delay time in acute myocardial infarction: a 6‐year experience. J Intern Med 1998; 243: 243–50.ObjectivesTo explore factors associated with delay time prior to hospital admission and in hospital amongst acute myocardial infarction (AMI) patients with particular emphasis on the delay time to the administration of thrombolytic therapy.MethodsDuring a 6‐year period we prospectively computerized pre‐hospital and in‐hospital time intervals for AMI patients admitted to the coronary care unit (CCU) direct from the emergency department (ED) or via paramedics, at Sahlgrenska Hospital, Göteborg, Sweden.ResultsPre‐hospital delay: independent predictors of a prolonged delay were increased age (P<> = 0.0007), female sex (P<> = 0.02) and a history of hypertension (P<> = 0.03). For AMI patients who received thrombolytic treatment and the only independent predictor of a prolonged delay was increased age (P<> = 0.005).In‐hospital delay: for all AMI patients independent predictors of a prolonged delay were prolonged pre‐hospital delay (P < 0.0001), increased age (P= 0.03) and a history of angina (P= 0.002), hypertension (P= 0.01) and diabetes (P= 0.01). For thrombolytic treated AMI patients independent predictors of a prolonged delay were prolonged pre‐hospital delay (P < 0.0001), female sex (P= 0.02) and a history of diabetes (P= 0.02).ConclusionRisk factors for both pre‐hospital and hospital delay time could in AMI be defined although slightly different. Two factors appeared for both, i.e. increasing age and a history of hypertension.