Fatigue is a major issue for children and adolescents with physical disabilities

AIM: This study aimed to investigate fatigue, and its correlates, in children and adolescents with physical disabilities. METHOD: Sixty-five young people aged 8 to 17 years (35 males, 30 females; mean age 13y 2mo, SD 2y 8mo) with mild to moderate physical disabilities (Gillette Functional Assessment Questionnaire levels 7-10) were recruited. Self-reported fatigue was measured using the PedsQL Multidimensional Fatigue Scale. Physical activity was measured using 7-day hip-worn accelerometer. Associations between fatigue, physical activity, and socio-demographic characteristics were examined using analysis of covariance, with significance (α) set at 0.05. Results were compared with normative data from other paediatric populations. RESULTS: Among children with physical disabilities, fatigue was associated with being physically inactive (F-statistic=4.42, p=0.040), female (F=4.37, p=0.042), and of low socio-economic status (F=3.94, p=0.050). Fatigue was not associated with age, weight status, or functional impairment. Young people with physical disabilities experienced high levels of fatigue compared with other paediatric health populations, and comparable to the paediatric cancer population. INTERPRETATION: Fatigue is an important issue for young people with physical disabilities. Clinicians and researchers working with this group should be mindful that fatigue is likely to impact on an individual's ability to undertake new treatment regimens or interventions. Interventions aimed at reducing fatigue are warranted. Increasing physical activity might play a role in reducing fatigue.

Autonomy Markers in Brazilian Adults With Intellectual Disabilities

The objective of the study was to investigate the relationship between autonomy markers in adult people with intellectual disabilities (ID) and variables such as intelligence quotient (IQ), early aging, and literacy. Participants were 47 adults with ID (33 men; aged 28-58 years with nonspecific etiology, 34 literate). All participants were trainees at the Center for Training of Capacity and Orientation for Employment at Associação de Pais e Amigos dos Excepcionais de São Paulo, São Paulo State, Brazil. They were divided into two age groups: younger (n = 27, mean age 31.85; +/- 2.23), and older (n = 38, mean age 41.84; +/- 5.54). They were administered intelligence scales twice, and answered questions related to social participation, community integration, and choice-making; the percentage of item responses leaning toward self-determination and freedom in choice-making was considered in defining the autonomy score. For both groups, IQ declined from the first to the second assessment. Autonomy scores were more determined by IQ classification than by literacy. Authors concluded that autonomy in people with ID is a multifactorial phenomenon associated with cognitive decline.

Work-related self-efficacy among community residents with psychiatric disabilities

A new measure of work-related self-efficacy for people with psychiatric disabilities is reported. The 37-item scale measures self-efficacy in four relevant activity domains: 1) vocational service access and career planning, 2) job acquisition, 3) work-related social skills, and 4) general work skills. The scale was developed in a 12-month longitudinal survey of urban residents diagnosed with schizophrenia or schizoaffective disorder (n = 104). Results indicate validity of both a four-factor structure differentiating four core skill domains, and a single factor representing total work-related self-efficacy. The favorable psychometric properties support further research and trial applications in supported employment and psychiatric vocational rehabilitation.

Knowledge and understanding of choice diversity of residential care staff working with individuals with intellectual disabilities

The present study aimed to trial the effectiveness of 10 newly developed brief vignettes portraying typical interactions between staff and people with intellectual disabilities in residential care settings to assess the knowledge and understanding of staff about choice diversity, pre- and post-attendance at a staff training workshop. A total of 29 residential staff completed the Vignette Rating Scale and a knowledge questionnaire pre- and post-training. A t- test conducted on the vignettes revealed that respondents identified fewer choices in the post-test vignettes compared to the pre-test vignettes. Results showed no significant difference between the pre- and post-test data on the knowledge questionnaire. The questionnaire revealed a high level of knowledge about choice prior to and following training. The vignettes, however, proved effective in measuring changes in awareness of choice diversity among residential staff following participation in a staff training workshop.

Factors associated with high anticholinergic burden in aging adults with intellectual disabilities:a cross-sectional study

Background: Anticholinergic (AC) medications are associated with cognitive and functional decline in older people, with risk of adverse outcomes increasing with increasing AC exposure. Older people with intellectual disabilities are at increased risk of high AC exposure owing to higher prevalence of multimorbidity, particularly psychiatric morbidities. Objectives: The aims of this study were to determine individual’s AC exposure using the AC cognitive burden (ACB) scale, identify therapeutic classes contributing to burden and determine clinical and demographic factors associated with two levels of AC exposure (ACB score 1–4, ACB 5+). Methods: Cross-sectional (self-report/proxy report)medication data were drawn from Wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing, a study on ageing of 753nationally representative people with ID aged over40 randomly selected from the National Intellectual Disability Database. Medication data were available for 736 (98%). Each individual’s cumulative AC exposure was calculated using the ACB. Multinomiallogistic regression was performed identifying clinical and demographic factors associated with ACB score1–4, and ACB 5+. Results: In the eligible population of 736 participants(mean (±SD) age 54.1 (±8.8) years,55% female), 522(70.9%) were exposed to an ACB medicine (ACB 1+); 214 (29%) had an ACB score of 5+; mean total ACB score= 4.5 (±3.0). Antipsychotics accounted for35.6% of the cumulative ACB score. Age over 65yearswas associated with increased likelihood of both levels of AC exposure (ACB 1–4—adjusted OR 3.28; 95%CI 1.49–7.25, ACB 5+—adjusted OR 3.08; 95%CI1.21–7.63) and having a mental health condition(ACB 1–4—adjusted OR 9.79; 95%CI 5.63–17.02, ACB 5+—adjusted OR 23.74; 95%CI 12.29–45.83). Conclusions: Using a simple cumulative measure proved an effective means to capture total burden and established that AC exposure was high and associated with older age and mental health morbidity. This highlights need for comprehensive medication reviews for older people with intellectual disabilities.

Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.

ESTUDO DOS FATORES ANTECEDENTES DA ATITUDE FACE AOS BENS DE LUXO: UMA ANÁLISE ENTRE GRUPOS DE PESSOAS PORTADORAS DE DEFICIÊNCIA FÍSICA E PESSOAS SEM DEFICIÊNCIA

Os produtos de luxo são capazes de transmitir significados sociais e individuais, bem como sua carga simbólica e emocional. Por meio desses produtos, é possível conhecer um pouco dos valores, crenças e atitudes das pessoas que os consomem. O número de pessoas com deficiência no Brasil chega a 45 milhões da população brasileira, e o mercado brasileiro voltado para pessoas com deficiência ainda é pouco explorado pelas empresas. Esse trabalho objetiva analisar os efeitos dos fatores antecedentes da atitude face aos bens de luxo entre pessoas portadoras de deficiência física e pessoas sem deficiência. A pesquisa fundamenta-se em uma abordagem de investigação quantitativa, onde os dados foram coletados por meio de um instrumento de pesquisa com a obtenção de 239 questionários respondidos, possibilitando a análise dos relacionamentos entre os construtos Status, Influência Social, Autoestima, Não funcionalidade sobre a Atitude Face aos Bens de Luxo. Para realizar os testes das hipóteses do estudo, foi realizada a análise de equações estruturais, com base no PLS-PM (Partial Least Squares Path Modeling), onde foram apresentadas medidas satisfatórias para os construtos investigados e o modelo proposto, sendo significantes algumas relações entre os construtos. O estudo concluiu que a percepção de status influencia positivamente a Atitude face ao luxo, pois os indivíduos buscam aumentar seu status através do consumo de bens de luxo. Concluiu-se também que a influência social e autoestima impactam positivamente a Atitude face aos bens de luxo. Não foram encontradas influências significantes da não funcionalidade com a atitude face ao luxo e, além disso, não foi confirmado que a autoestima influencia a percepção de status e de influência social. Os resultados evidenciam também que pessoas sem deficiência possuem maior percepção de Status se comparados com as pessoas com deficiência física. O grupo de pessoas com deficiência física tem maior percepção de Funcionalidade atribuída aos produtos e maior Autoestima se comparado com o grupo de pessoas sem deficiência. De acordo com os resultados, o impacto da Autoestima sobre a Atitude Face ao Luxo é moderado pelo porte de deficiência.

The effect of education programs on paratransit demand of people with disabilities

We describe a passenger education program to encourage responsible use of paratransit by people with disabilities. We use state-of-the-art econometric techniques to evaluate its success. We find that it has moderate effects on demand for transportation but large effects on how passengers use the transportation. In particular, passengers are more responsible about meeting the transportation at the curb rather than waiting for help inside their home. Cost-benefit analysis of the program suggests that it is a long-term worthwhile activity.

Designing with people with disabilities : adapting best practices of DIY and organizational approaches

Individualization of design is often necessary particularly when designing with people with disabilities. Maker communities, with their flexible Do-It-Yourself (DIY) practices, offer potential to support individualized and cost-effective product design. However, efforts to adapt DIY practices in designing with people with disabilities tend to face difficulties with regard to continuous commitment, infrastructure provision and proper guidance. We carried out interviews with diverse stakeholders in the disability services sector and carried out observations of local makerspaces to understand their current practices and potential for future collaborations. We found that makerspace participants face difficulties in terms of infrastructure provision and proper guidance whereas Disability Service Organizations face difficulties in continuous expertise. We suggest that artful infrastructuring to blend the best of both approaches offers potential to create a sustainable community that can design individualized technologies to support people with disabilities.

Implications of the Information Technology Revolution for People with Disabilities

The paper focuses on opportunities for the integration of persons with different types of disabilities in the information technology (IT) labour market. Recent IT developments are identified and examined for their potentially harmful or beneficial effects on access to the IT labour market for persons with disabilities. The opportunities created by new job creation, new forms of training, teleworking, and the role of assistive technologies in facilitating workplace accommodations are briefly described. The focus is on new options for the design and implementation of computer-related assistive technologies in the workplace, and the impact of teleworking and the World Wide Web on employability and work-related training of persons with disabilities. The paper closes with a brief discussion of the roles that government agencies, business firms, labour unions, non-governmental organisations and education can play to help people with disabilities join the IT revolution and share its benefits.

A journey access tool to facilitate mobility-related access for people with disabilities in low and middle income countries

People with disabilities (PWD) experience difficulties in accessing the transport system (including both infrastructure and services) to meet their needs for health care, employment and other activities. Our research shows that lack of access to the journeys needed for these purposes is a more significant barrier in low and middle income countries than in high income countries, and results in inadequate health care, rehabilitation and access to education and employment. At the same time, the existing transport system in low and middle income countries presents much higher road crash risks than in high income countries. By combining the principles and methods of Road Safety Audit and disability access, and adapting these Western approaches to a low/middle income country context, we have worked with Handicap International Cambodia to develop a Journey Access Tool (JAT) for use by disabled peoples’ organisations (DPOs), people with a disability and other key stakeholders. A key element of the approach is that it involves the participation of PWD on the journeys that they need to take, and it identifies infrastructure and service improvements that should be prioritised in order to facilitate access to these journeys. The JAT has been piloted in Cambodia with a range of PWD. This presentation will outline the design of the JAT and the results of the pilot studies. The information gained thus far strongly suggests that the JAT is a valuable and cost-effective approach that can be used by DPOs and professionals to identify barriers to access and prioritise the steps needed to address them.

Camera Canvas: Image Editing Software for People with Disabilities

Poster is based on the following paper: C. Kwan and M. Betke. Camera Canvas: Image editing software for people with disabilities. In Proceedings of the 14th International Conference on Human Computer Interaction (HCI International 2011), Orlando, Florida, July 2011.

A Customizable Camera-based Human Computer Interaction System Allowing People With Disabilities Autonomous Hands Free Navigation of Multiple Computing Task

Many people suffer from conditions that lead to deterioration of motor control and makes access to the computer using traditional input devices difficult. In particular, they may loose control of hand movement to the extent that the standard mouse cannot be used as a pointing device. Most current alternatives use markers or specialized hardware to track and translate a user's movement to pointer movement. These approaches may be perceived as intrusive, for example, wearable devices. Camera-based assistive systems that use visual tracking of features on the user's body often require cumbersome manual adjustment. This paper introduces an enhanced computer vision based strategy where features, for example on a user's face, viewed through an inexpensive USB camera, are tracked and translated to pointer movement. The main contributions of this paper are (1) enhancing a video based interface with a mechanism for mapping feature movement to pointer movement, which allows users to navigate to all areas of the screen even with very limited physical movement, and (2) providing a customizable, hierarchical navigation framework for human computer interaction (HCI). This framework provides effective use of the vision-based interface system for accessing multiple applications in an autonomous setting. Experiments with several users show the effectiveness of the mapping strategy and its usage within the application framework as a practical tool for desktop users with disabilities.