Experiences and meaning of the aquatic environment for individuals with physical disabilities

This study examines the experiences and meaning of physical activity in the aquatic environment to enhance social, cultural and political understanding of its impact in the lives of individuals with physical disabilities. Interviews, lived experience descriptions and artifacts present an explanation of the felt sense oftheir bodies as they engage in swimming or scuba diving. 11 Combining written, verbal and visual descriptions generated by informants provides a detailed account of the unique qualities of physical activity in the water for those with physical disabilities. Participants' descriptions highlight that context is an important aspect of physical activity among individuals with physical disabilities through discussion of motility and the role of the lived body. Aspects of the aquatic environment create a setting that facilitates forgetfulness of the lived body's presence. Instructors and participants alike will benefit from learning the difference between the object body and the lived body, listening to the body's voice as they participate in physical activity .

Breaking the silence : exploring the workplace experiences of six women with learning disabilities

In the current economic climate, employees are expected to upgrade their skills in order to remain productive and competitive in the workplace, and many women with learning disabilities! may feel doubly challenged when dealing with such expectations. Although the number of people with reported learning disabilities who enter the workforce is expected to increase, a dearth of research focuses on work-related experiences of women with learning disabilities; consequently, employers and educators often are unaware ofthe obstacles and demands facing such individuals. This qualitative narrative study sheds light on the work experiences of women with diagnosed or suspected learning disabilities. The study used semistructured interviews to explore their perspectives and reflections on learnlng in order to: (a) raise awareness of the needs of women with learning disabilities, (b) enhance their opportunities to learn in the workplace, and (c) draw attention to the need for improvement of inclusiveness in the workplace, especially for hidden disabilities. Study findings reveal that participants' learning was influenced by work relationships, the learning environments, self-determination, and taking personal responsibility. Moreover, the main accommodation requested was to have supportive and understanding work relationships and environments. Recommendations are made for future research and workplace improvements, most notably that no employees should be left behind through an employee-centered approach.

Investigation of Changes in Prescribed and Voluntary Job Roles in Community Service Delivery for People who have Intellectual Disabilities after the Implementation of the 3 Rs; Rights, Respect and Responsibility Project

The purpose of this thesis was to explore whether there is change in organizational citizenship behaviours in community agency staff following agency adoption of a rights - based service philosophy. Four community agency support staff were interviewed to investigate how residential care providers in services for persons who have intellectual disabilities describe their voluntary job related behaviours following training about human rights. The major finding was that the participants were actively engaged in displaying civic virtue, courtesy, and altruism discretionary behaviours. There was evidence of a post rights training shift in communication patterns with support staff reporting that they used language that prom,oted and advocated for human rights, and reported increased communication exchanges among persons supported by the agency, support staff and managers. Participants also suggested that the individuals they support asserted their rights more frequently and they were more active in their own life choices following rights training.

Managing Risk in a Culture of Rights: Providing Support and Treatment in Community-Based Settings for Persons with Intellectual Disabilities who Sexually Offend

People with intellectual disability who sexually offend commonly live in community-based settings since the closing of all institutions across the province of Ontario. Nine (n=9) front line staff who provide support to these individuals in three different settings (treatment setting, transitional setting, residential setting) were interviewed. Participants responded to 47 questions to explore how sex offenders with intellectual disability can be supported in the community to prevent re-offenses. Questions encompassed variables that included staff attitudes, various factors impacting support, structural components of the setting, quality of life and the good life, staff training, staff perspectives on treatment, and understanding of risk management. Three overlapping models that have been supported in the literature were used collectively for the basis of this research: The Good Lives Model (Ward & Gannon, 2006; Ward et al., 2007), the quality of life model (Felce & Perry, 1995), and variables associated with risk management. Results of this research showed how this population is being supported in the community with an emphasis on the following elements: positive and objective staff attitude, teamwork, clear rules and protocols, ongoing supervision, consistency, highly trained staff, and environments that promote quality of life. New concepts arose which suggested that all settings display an unequal balance of upholding human rights and managing risks when supporting this high-risk population. This highlights the need for comprehensive assessments in order to match the offender to the proper setting and supports, using an integration of a Risk, Need, Responsivity model and the Good Lives model for offender rehabilitation and to reduce the likelihood of re-offenses.

Bridging the Conceptualization of Youth with Intellectual Disabilities to Sentencing under the YCJA

The current study examined how disability and the concepts of risk, need and responsivity are understood by criminal justice professionals and inform their perceptions of young offenders with ID at sentencing under the ‘different but equal’ philosophy. Semi-structured interviews were conducted with 11 lawyers and 8 mental health workers across 6 major urban areas in Ontario. Participants primarily perceived ID through a medical discourse, overlooking social and structural barriers that, in some cases, may hinder adherence to sentencing dispositions. Specifically, participants discussed balancing the reduced culpability of offenders (e.g., intent) – justifying lenient sentencing – with public safety concerns (i.e., ID viewed as a barrier to rehabilitation) – justifying increasing the severity of sentences. Participants assessed clients with ID and their risks, needs and responsivity within the context of other legal factors: criminal history, severity of the offence, and YCJA objectives. Participants articulated the importance of tailored courthouse identification programs, services/funding, and education/training.

Mind-reading difficulties in the siblings of people with Asperger's syndrome: evidence for a genetic influence in the abnormal development of a specific cognitive domain

Background: Previous research suggests that the phenotype associated with Asperger's syndrome (AS) includes difficulties in understanding the mental states of others, leading to difficulties in social communication and social relationships. It has also been suggested that the first-degree relatives of those with AS can demonstrate similar difficulties, albeit to a lesser extent. This study examined 'theory of mind' (ToM) abilities in the siblings of children with AS relative to a matched control group. Method: 2 7 children who had a sibling with AS were administered the children's version of the 'Eyes Test'(Baron-Cohen, Wheelwright, Stone, & Rutherford, 1999). The control group consisted of 27 children matched for age, sex, and a measure of verbal comprehension, and who did not have a family history of AS/autism. Results: A significant difference was found between the groups on the Eyes Test, the 'siblings' group showing a poorer performance on this measure of social cognition. The difference was more pronounced among female siblings. Discussion: These results are discussed in terms of the familial distribution of a neuro-cognitive profile associated with AS, which confers varying degrees of social handicap amongst first-degree relatives. The implication of this finding with regard to the autism/AS phenotype is explored, with some discussion of why this neuro-cognitive profile (in combination with corresponding strengths) may have an evolutionary imperative.

Anxiety problems in young people with Asperger syndrome: a case series

It is now well established that the prevalence of mental health difficulties in individuals with autism spectrum disorders (ASD) is considerably higher than in the general population. With recent estimates of the prevalence of autism spectrum disorders being as high as one percent, increasing numbers of children and young people are presenting to local and specialist services with mental health problems in addition to a diagnosis of ASD. Many families report that the impact of the mental health problems can be as or more impairing than the autism spectrum difficulties themselves. Clinical services are frequently called upon to treat these difficulties; however, there is limited evidence for the effectiveness of treatments in this population. This paper reports a case series of children and adolescents with ASD and an anxiety disorder who were treated with a standard cognitive behaviour therapy (CBT) rationale adapted to take account of the neuropsychological features of ASD. Common features of the presentation of the disorders and also treatment processes are discussed.

Continuity of care for people with psychotic illness: its relationship to clinical and social functioning.

Background: The relationship between continuity of care and user characteristics or outcomes has rarely been explored. The ECHO study operationalized and tested a multi-axial definition of continuity of care, producing a seven-factor model used here. Aims: To assess the relationship between user characteristics and established components of continuity of care, and the impact of continuity on clinical and social functioning. Methods: The sample comprised 180 community mental health team users with psychotic disorders who were interviewed at three annual time-points, to assess their experiences of continuity of care and clinical and social functioning. Scores on seven continuity factors were tested for association with user-level variables. Results: Improvement in quality of life was associated with better Experience & Relationship continuity scores (better user-rated continuity and therapeutic relationship) and with lower Meeting Needs continuity factor scores. Higher Meeting Needs scores were associated with a decrease in symptoms. Conclusion: Continuity is a dynamic process, influenced significantly by care structures and organizational change.

Resources, staff beliefs and organizational culture: factors in the use of information and communication technology for adults with intellectual disabilities

Background  Access to, and the use of, information and communication technology (ICT) is increasingly becoming a vital component of mainstream life. First-order (e.g. time and money) and second-order factors (e.g. beliefs of staff members) affect the use of ICT in different contexts. It is timely to investigate what these factors may be in the context of service provision for adults with intellectual disabilities given the role ICT could play in facilitating communication and access to information and opportunities as suggested in Valuing People. Method  Taking a qualitative approach, nine day service sites within one organization were visited over a period of 6 months to observe ICT-related practice and seek the views of staff members working with adults with intellectual disabilities. All day services were equipped with modern ICT equipment including computers, digital cameras, Internet connections and related peripherals. Results  Staff members reported time, training and budget as significant first-order factors. Organizational culture and beliefs about the suitability of technology for older or less able service users were the striking second-order factors mentioned. Despite similar levels of equipment, support and training, ICT use had developed in very different ways across sites. Conclusion  The provision of ICT equipment and training is not sufficient to ensure their use; the beliefs of staff members and organizational culture of sites play a substantial role in how ICT is used with and by service users. Activity theory provides a useful framework for considering how first- and second-order factors are related. Staff members need to be given clear information about the broader purpose of activities in day services, especially in relation to the lifelong learning agenda, in order to see the relevance and usefulness of ICT resources for all service users.

Interpreting communication of people with profound and severe learning difficulties

The present paper highlights some of the issues involved in interpreting the communication behaviours of people with profound and multiple learning difficulties (PMLDs). Both inference and intention can play an important role in the communication process, and this raises a number of difficulties and dangers where one of the communication partners is not in a position to correct misunderstandings. The present authors discuss the importance of validating communication and pose a number of key questions to ask those who are most significant in the life of a person with PMLDs. A case study is provided that illustrates a number of these issues.

Consensus Statement: Chromosomal Microarray Is a First-Tier Clinical Diagnostic Test for Individuals with Developmental Disabilities or Congenital Anomalies

Chromosomal microarray (CMA) is increasingly utilized for genetic testing of individuals with unexplained developmental delay/intellectual disability (DD/ID), autism spectrum disorders (ASD), or multiple congenital anomalies (MCA). Performing CMA and G-banded karyotyping on every patient substantially increases the total cost of genetic testing. The International Standard Cytogenomic Array (ISCA) Consortium held two international workshops and conducted a literature review of 33 studies, including 21,698 patients tested by CMA. We provide an evidence-based summary of clinical cytogenetic testing comparing CMA to G-banded karyotyping with respect to technical advantages and limitations, diagnostic yield for various types of chromosomal aberrations, and issues that affect test interpretation. CMA offers a much higher diagnostic yield (15%-20%) for genetic testing of individuals with unexplained DD/ID, ASD, or MCA than a G-banded karyotype (similar to 3%, excluding Down syndrome and other recognizable chromosomal syndromes), primarily because of its higher sensitivity for submicroscopic deletions and duplications. Truly balanced rearrangements and low-level mosaicism are generally not detectable by arrays, but these are relatively infrequent causes of abnormal phenotypes in this population (<1%). Available evidence strongly supports the use of CMA in place of G-banded karyotyping as the first-tier cytogenetic diagnostic test for patients with DD/ID, ASD, or MCA. G-banded karyotype analysis should be reserved for patients with obvious chromosomal syndromes (e.g., Down syndrome), a family history of chromosomal rearrangement, or a history of multiple miscarriages.

Care arrangements for people with dementia in developing countries

Background: Rapid demographic ageing will soon lead to large increases in the numbers of persons with dementia in developing countries. This study is the first comprehensive assessment of care arrangements for people with dementia in those regions. Methods: A descriptive and comparative study of dementia care; caregiver characteristics, the nature of care provided, and the practical, psychological (Zarit Burden Interview, General Health Questionnaire) and economic impact upon the caregiver in 24 centres in India, China and South East Asia, Latin America and the Caribbean and Africa. Results: We interviewed 706 persons with dementia, and their caregivers. Most caregivers were women, living with the person with dementia in extended family households. One-quarter to one-half of households included a child. Larger households were associated with lower caregiver strain, where the caregiver was co-resident. However, despite the traditional apparatus of family care, levels of caregiver strain were at least as high as in the developed world. Many had cutback on work to care and faced the additional expense of paid carers and health services. Families from the poorest countries were particularly likely to have used expensive private medical services, and to be spending more than 10% of the per capita GNP on health care. Conclusions: Older people in developing countries are indivisible from their younger family members. The high levels of family strain identified in this study feed into the cycle of disadvantage and should thus be a concern for policymakers in the developing world. Copyright © 2004 John Wiley & Sons, Ltd.

Exercise programs improve mobility and balance in people with Parkinson's disease

Compromised balance and loss of mobility are among the major consequences of Parkinson's disease (PD). The literature documents numerous effective interventions for improving balance and mobility. The purpose of this study was to verify the effectiveness of two exercise programs on balance and mobility in people with idiopathic PD. Thirty-four participants, with idiopathic PD that ranged from Stage I to Stage III on the Hoehn & Yahr (H&Y) scale, were assigned to two groups. Group 1 (n = 21; 67±9 years old) was engaged in an intensive exercise program (aerobic capacity, flexibility, strength, motor coordination and balance) for 6 months: 72 sessions, 3 times a week, 60 minutes per session; while Group 2 (n = 13; 69±8 years old) participated in an adaptive program (flexibility, strength, motor coordination and balance) for 6 months: 24 sessions, once a week, 60 minutes per session. Balance and basic functional mobility were assessed in pre- and post-tests by means of the Berg Balance Scale and the Timed Up and Go Test. Before and after the interventions, groups were similar in clinical conditions (H&Y, UPDRS, and Mini-Mental). A MANOVA 2 (programs) by 2 (moments) revealed that both groups were affected by the exercise intervention. Univariate analyses showed that participants improved their mobility and balance from pre- to post-test. There were no differences between groups in either mobility or balance results. Both the intensive and adaptive exercise programs improved balance and mobility in patients with PD. © 2009 Elsevier Ltd. All rights reserved.

Programa informativo sobre deficiência mental e inclusão: mudanças nas atitudes socias de crianças sem deficiência

This article presents part of a study that analyzed the concepts, feelings and attitudes of children without disabilities about mental retardation and inclusion and evaluated the effects of an informative program that deals with the issue. The study included forty children from two first grade classrooms in a public school in Marília-SP. One classroom participated as a control group. All children underwent pre and post tests in the form of interviews on the subject and a scale of children's social attitudes towards inclusion was applied. The experimental group participated in the informative program, composed of thirteen weekly meetings, in which the limitations and possibilities of people with mental retardation, specialized care, their schooling and family and social aspects, were discussed, using various educational and recreational strategies. The data collected in the interviews were categorized and content analysis was conducted. With the scale, individual scores were obtained. Statistical calculations were performed to verify the significance of differences between groups. In this paper we discuss the data obtained with the scale which were crossed with interview data. The results of the interviews and the scale indicated several changes in children's attitudes towards inclusion, but relations between many of these data could not be statistically confirmed. These results indicate the importance of expanding the research on the relationship between the phenomena presented.

PROFILE OF CAREGIVERS OF ELDERLY PEOPLE WITH ALZHEIMER DISEASE ASSOCIATED TO RESILIENCE

This exploratory and descriptive study described sociodemographic and health variables of caregivers of elderly people with Alzheimer's disease, associating care provided with resilience. Participants were 101 caregivers over 18 years old who accompanied older adults in a Primary Care Unit of a Brazilian public hospital in 2009. Questionnaires regarding the profile, the Beck Depression Inventory, and the Resilience Scale were used. Descriptive statistical analysis was performed. Most caregivers were female, without depression, aided by other people in providing care, and had a high degree of resilience. The variables degree of kinship, medical treatment, the use of medication, tiredness, prostration, discouragement, and caregivers' mental health had significant association with resilience. Physical health was significantly associated to experience in care, with 82 elderly people presenting acute cognitive damage. Older adults in the family context can benefit from a more resilient caregiver.