Stomp : an interactive platform for people with intellectual disabilities

For people with intellectual disabilities there are significant barriers to inclusion in socially cooperative endeavours. This paper investigates the effectiveness of Stomp, a tangible user interface (TUI) designed to provide new participatory experiences for people with intellectual disability. Results from an observational study reveal the extent to which the Stomp system supports social and physical interaction. The tangible, spatial and embodied qualities of Stomp result in an experience that does not rely on the acquisition of specific competencies before interaction and engagement can occur.

Digital technologies and musical participation for people with intellectual disabilities

Research on the aspirations of people with intellectual disabilities documents the importance of alternative zones of inclusion where they can assert their own definitions of ability and normality. This stands in contrast to assumptions concerning technology and disability that position technology as ‘normalising’ the disabled body. This paper reports on the role of a digital music jamming tool in providing access to creative practice by people with intellectual disabilities. The tool contributed to the development of a spatio-temporal zone to enable aesthetic agency within and beyond the contexts of deinstitutionalised care. The research identifies the interactions among tools, individuals and groups that facilitated participants’ agency in shaping the form of musical practice. Further, we document the properties of emergent interaction - supported by a tool oriented to enabling music improvisation - as potentially resisting assumptions regarding normalisation.

Motivation in children with intellectual disabilities

This article addresses the questions of whether there are motivational deficits in children with intellectual disabilities, whether those with Down syndrome are more likely to display motivational deficits, and how motivation might be supported. The available literature that has examined motivation in children with intellectual disabilities was considered and integrated to address the questions outlined above. There is little published research on this vital topic. Reports on motivational problems differ depending upon the method of data collection. Observational studies using structured tasks generally reveal no differences between children with intellectual disabilities and typically developing children matched for mental age. When reports of parents or teachers are used, children with intellectual disabilities appear to have deficits in motivation. No evidence was found for a particular deficit in children with Down syndrome. The results of this review challenge the perception that children with intellectual disabilities will generally have motivational problems, although it is clear that motivation is a complex construct, not easily examined in those with intellectual disabilities. Strategies for addressing problems and for maintaining motivation, based on theory and evidence, are provided. These strategies are applicable across a range of settings including the home, school, and more adult-oriented services.

Specialist versus generic models of psychiatry training and service provision for people with intellectual disabilities

Background  Models of service provision and professional training differ between countries. This study aims to investigate a specialist intellectual disabilities model and a generic mental health model, specifically comparing psychiatrists’ knowledge and competencies, and service quality and accessibility in meeting the mental health needs of people with intellectual disabilities. Method  Data were collected from consultant and trainee psychiatrists within a specialist intellectual disabilities model (UK) and a generic mental health model (Australia). Results  The sample sizes were 294 (UK) and 205 (Australia). Statistically significant differences were found, with UK participants having positive views about the specialist intellectual disabilities service model they worked within, demonstrating flexible and accessible working practices and service provision, responsive to the range of mental health needs of the population with intellectual disabilities, and providing a wide range of treatments and supports. The UK participants were knowledgeable, well trained and confident in their work. They wanted to work with people with intellectual disabilities. In all of these areas, the converse was found from the Australian generic mental health service model. Conclusions  The specialist intellectual disabilities model of service provision and training has advantages over the generic mental health model.

Effective responses to offenders with intellectual disabilities : generalist and specialist services working together

Despite policies of deinstitutionalisation, many people with intellectual disabilities in developed western countries continue to live in mainstream institutional settings, such as correctional facilities, rather than in the community with support from disability services. This paper reports on the life stories of 10 people with intellectual disabilities, who had been imprisoned in adult correctional facilities in Queensland. The pathways taken by these 10 people into and out of prison are marked by significant abuse, neglect, and poverty. Significant disparity and disconnection is also displayed between the policies and service approaches, particularly between the disability, mental health, and correctional systems in Queensland. Based on these findings, a framework for practice, which spans both generic and specialist services, is suggested.

Playful interactions for people with intellectual disabilities

For people with intellectual disabilities, there are significant barriers to inclusion in socially cooperative endeavors. This paper investigates the effectiveness of Stomp, a tangible user interface (TUI) designed to provide new participatory experiences for people with intellectual disability. Results from an observational study reveal the extent to which the Stomp system supports social and physical interaction. The tangible, spatial, and embodied qualities of Stomp result in an experience that does not rely on the acquisition of specific competencies before interaction and engagement can occur.

Relationship between Barthel index with physical tests in adults with intellectual disabilities

We usually find low levels of fitness condition affect other aspects of living for people with ID like dependency in carrying out activivities of daily living. Therefore we find high levels of dependency in activities of daily living due to poor fitness condition. The aim of the study is to explore the criterion validity of the Barthel index with a physical fitness test. An observational cross-sectional study was conducted. Data from the Barthel index and a physical fitness test were measured in 122 adults with intellectual disability. The data were analysed to find out the relationship between four categories of the physical fitness test and the Barthel index. It needs to be stressed that the correlations between the Barthel index and leg, abdominal and arm strength can confirm that these physical test are predictive of the Barthel index. The correlations between the balance variables as functional reach and single-leg stance with eyes open shown relationships with Barthel Index. We found important correlations between the physical fitness test and the Barthel index, so we can affirm that some physical fitness features are predictor variables of the Barthel index.

Improving adherence physical activity with a smartphone application based on adults with intellectual disabilities (APPCOID)

Background People with intellectual disabilities (ID) have lower levels of physical activity and quality of life and they have a lot of barriers to face when taking part in physical activity. Other problems are the poor adherence to physical activity such people have so this study is designed to improve adherence to physical activity for people with intellectual disabilities with the assistance of an application for smartphones. The aim of the study will be to improve physical activity and physical condition after multimodal intervention and to analyse the promotion of adherence to physical activity through a multimodal intervention and an app intervention (mHealth) in people with ID. Methods A two-stage study will be conducted. In stage 1 a multimodal intervention will take place will be done with physical activity and educational advice over eight weeks, two days a week. Data will be measured after and before the intervention. In stage 2 a randomized controlled trial will be conducted. In the intervention group we will install an application to a smartphone; this application will be a reminder to do a physical activity and they have to select whether they have or haven’t done a physical activity every day. This application will be installed for 18 weeks. Data will be measured after and before the application is installed in two groups. We will measure results 10 weeks later when the two groups don’t have the reminder. The principal outcome used to measure the adherence to physical activity will be the International Physical Activity Questionnaire; secondary outcomes will be a fun-fitness test and self-report survey about quality of life, self-efficacy and social support. Samples will be randomized by sealed envelope in two groups, with approximately 20 subjects in each group. It’s important to know that the therapist will be blinded and won’t know the subjects of each group. Discussion Offering people with ID a multimodal intervention and tool to increase the adherence to a physical activity may increase the levels of physical activity and quality of life. Such a scheme, if beneficial, could be implemented successfully within public health sense. Trial registration ClinicalTrials.gov Identifier: NCT01915381.

Active ageing among older adults with lifelong intellectual disabilities : the role of familial and nonfamilial social networks

Little research has examined the extent to which active ageing is facilitated by family and nonfamilial support persons of older adults with intellectual disabilities. This study explores the role played by key unpaid carers/support persons of older adults with lifelong intellectual disabilities in facilitating "active ageing." Little research has examined the extent to which active ageing is facilitated by family and nonfamilial support persons of older adults with intellectual disabilities. This study explores the role played by key unpaid carers/support persons of older adults with lifelong intellectual disabilities in facilitating “active ageing.” All key social network members conceived active ageing to mean ongoing activity. Family and extended family members were found to play a crucial role in facilitating independent living and providing opportunities for recreational pursuits for those living in group homes. Members of religious organizations and group home staff provided the same types of opportunities where family support was absent. The findings suggest the need for improvements in resource provision, staff training, and group home policy and building design.

Service providers' perceptions of active ageing among older adults with lifelong intellectual disabilities

Background: Considerable attention is currently being directed towards both active ageing and the revising of standards for disability services within Australia and internationally. Yet, to date, no consideration appears to have been given to ways to promote active ageing among older adults with intellectual disabilities. Methods: Semi-structured interviews were conducted with 16 Australian professional direct-care support staff (service providers) about their perceptions of ageing among older adults with lifelong intellectual disabilities and what active ageing might entail for an individual from this population who is currently under their care, in both the present and future. Data were analysed against the six core World Health Organization active ageing outcomes for people with intellectual disabilities. Results: Service providers appeared to be strongly focused on encouraging active ageing among their clients. However, their perceptions of the individual characteristics, circumstances and experiences of older adults with intellectual disabilities for whom they care suggest that active ageing principles need to be applied to this group in a way that considers both their individual and diverse needs, particularly with respect to them transitioning from day services, employment or voluntary work to reduced activity, and finally to aged care facilities. The appropriateness of this group being placed in nursing homes in old age was also questioned. Conclusion: Direct-care staff of older adults with intellectual disabilities have a vital role to play in encouraging and facilitating active ageing, as well as informing strategies that need to be implemented to ensure appropriate care for this diverse group as they proceed to old age.

The assessment of mental health in children with intellectual disability

Aim: Individuals with intellectual disability (ID) have higher rates of mental health problems than the general population. Assessment tends to rely heavily on self-report, but persons with ID often have difficulties in identifying and describing their own thoughts and feelings. Measures that are psychometrically sound with typically developing populations may not be as robust in samples with ID. The aim of the current study was to examine a range of self-report measures for assessing the mental health of children with ID, and to consider the appropriateness of minor modifications to those instruments. Method: The participants were 58 children with ID (mean 11.7 years) attending Year 6 in mainstream primary schools. At the first time point they completed four established measures of depression, anxiety and mood. Minor modifications were made to wording and format at re-administration six months later. Results: Internal consistency varied considerably across measures. Modifications resulted in small or no improvements, but the results were relatively consistent over time and across similar measures. Some gender differences were evident. Conclusions: The findings confirm the difficulties that children with ID may have when responding to self-report measures of mental health, and suggest that care should be taken in choice of instruments. While modifications can produce small improvements, it is clear that more robust measures of mental health are needed for persons with ID.

Development of a new index of balance in adults with intellectual and developmental disabilities

Purposes: The first objective was to propose a new model representing the balance level of adults with intellectual and developmental disabilities (IDD) using Principal Components Analysis (PCA); and the second objective was to use the results from the PCA recorded by regression method to construct and validate summative scales of the standardized values of the index, which may be useful to facilitate a balance assessment in adults with IDD. Methods: A total of 801 individuals with IDD (509 males) mean 33.1±8.5 years old, were recruited from Special Olympic Games in Spain 2009 to 2012. The participants performed the following tests: the timed-stand test, the single leg stance test with open and closed eyes, the Functional Reach Test, the Expanded Timed-Get-up-and-Go Test. Data was analyzed using principal components analysis (PCA) with Oblimin rotation and Kaiser normalization. We examined the construct validity of our proposed two-factor model underlying balance for adults with IDD. The scores from PCA were recorded by regression method and were standardized. Results: The Component Plot and Rotated Space indicated that a two-factor solution (Dynamic and Static Balance components) was optimal. The PCA with direct Oblimin rotation revealed a satisfactory percentage of total variance explained by the two factors: 51.6 and 21.4%, respectively. The median score standardized for component dynamic and static of the balance index for adults with IDD is shown how references values. Conclusions: Our study may lead to improvements in the understanding and assessment of balance in adults with IDD. First, it confirms that a two-factor model may underlie the balance construct, and second, it provides an index that may be useful for identifying the balance level for adults with IDD.

Factor analysis of the Self Report Version of the Strengths and Difficulties Questionnaire in a sample of children with intellectual disability

The rate of emotional and behavioral disturbance in children with intellectual disability (ID) is up to four times higher than that of their typically developing peers. It is important to identify these difficulties in children with ID as early as possible to prevent the chronic co-morbidity of ID and psychopathology. Children with ID have traditionally been assessed via proxy reporting, but appropriate and psychometrically rigorous instruments are needed so that children can report on their own emotions and behaviors. In this study, the factor structure of the self-report version of the Strengths and Difficulties Questionnaire (SDQ) was examined in a population of 128 children with ID (mean age = 12 years). Exploratory and Confirmatory Factor Analysis showed a three factor model (comprising Positive Relationships, Negative Behavior and Emotional Competence) to be a better measure than the original five factor SDQ model in this population.

Vulnerability to loneliness in people with intellectual disability: an explanatory model

Research with typically developing groups has identified loneliness as a significant predictor of a range of physical and mental health problems. This paper reviews research about loneliness in children and adults with intellectual disability. Although a considerable body of evidence has highlighted the difficulties individuals with intellectual disability have with friendships, there is a relative scarcity of research focused explicitly on loneliness. The available evidence suggests that up to half of those with intellectual disability are chronically lonely, compared with around 15-30% of people in the general population. The cognitive, physical and mental health problems already associated with intellectual disability are likely to be compounded by experiences of chronic loneliness. We argue that people with intellectual disability are highly vulnerable to loneliness and present a theoretical model of vulnerability that comprises three reciprocally influencing domains: social attitudes and expectations; opportunities and experiences; and skill deficits associated with intellectual disability. We propose that societal views which have traditionally devalued and stigmatised those with intellectual disability limit their opportunities for experiencing social and emotional connectedness with others. Individual skill deficits in areas such as communication, self-regulation and social understanding, as well as functional difficulties associated with intellectual disability, also potentially influence the opportunities and experiences of people with intellectual disability, both directly and via multiple layers of the social context. In turn, limited opportunities will entrench particular skill deficits and reinforce negative attitudes towards intellectual disability. Future research about loneliness and intellectual disability needs to address the difficulties of measuring emotional isolation in this population, as well as the possibility that people with intellectual disability may understand, experience and interpret loneliness somewhat differently from others. The model proposed in this paper provides a starting point for developing a more sophisticated understanding of the experience of loneliness for individuals with intellectual disability.

The development of an intervention to promote the capacity to wait in children with intellectual disability

Aim: Individuals with intellectual disability (ID) often have difficulty with waiting, an important aspect of everyday life. Successful waiting require cognitive, emotional and behavioural self-regulation, and is an essential element in the capacity to delay gratification. Method: We developed an intervention to provide parents with the knowledge and strategies to promote their child’s capacity to wait. The intervention was grounded in previous work about the skills underpinning successful waiting, such as goal-setting, understanding time, and managing frustration. Eleven parents of children with ID (mean CA 9.4 years; mean MA 47 months) participated in an intervention trial. Following pre-testing of their child’s capacity to wait and delay gratification, parents attended a 1 day workshop that was followed by monthly phone discussions with the researchers to monitor progress and provide advice. Post-testing was undertaken 1 year later. Results: Compared with a wait-listed control group, children whose parents had completed the intervention displayed significant improvements in their capacity to wait on a delay of gratification task. Parents reported that their child had become more successful in everyday waiting situations. Conclusion: The results of this pilot study are promising and pave the way for larger-scale interventions to improve self-regulatory skills in people with ID.