Background: It is well documented in the literature in the intellectual disability field that choice people with intellectual disabilities is limited. The human need to experience and inform everyday life choices, and the limited opportunities to do so, results in a contemporary health and human rights issue. Research Question: This study aims to explore what informs the everyday occupational choices made by young adults with intellectual and developmental disabilities in a community based setting in South Africa. Method: Qualitative interviews and a focus group were held with six young adults, who were recruited through a local non-profit training organisation. Results: Respondents identified (1) being different, (2) having limited choices, (3) accepting and staying small or (4) challenging and growing up, were the four core themes that arose from the interviews. Conclusion: It became evident that everyday occupational choices are co-constructed in context, where factors that were identified are consistent with those from the international literature which show that people with intellectual disabilities are widely stigmatised and prohibited from choice making, for several reasons, both intrapersonal and contextual. Implications: This study highlights the influence and importance of raising awareness and consciousness in society so that counter-hegemonic practices can promote occupational and social justice and change attitudes to ensure that people with disabilities have the choice to engage in balanced, meaningful occupations.

This qualitative study with a phenomenological approach explored the friendship experiences of adolescents with intellectual disabilities from their own perspective. Five adolescents with intellectual disabilities from Community Living Toronto were interviewed using a semi-structured interview guide about the meaning, nature, formation, maintenance, and development of friendships. The interview questions were first pilot-tested with two adolescents with intellectual disabilities. The interviews were analyzed, and themes were identified. The findings indicated that these young people attached helping, trust, affection, intimacy, and companionship to the meaning of friendship. Participants identified friends as casual friends, best friends, buddies, and family friends. Adolescents with ID did not report intimate and reciprocated friendships with buddies and family friends. Disclosing secrets, personal information and feelings and receiving emotional support were limited only to relationships with best friends with disabilities, in their age group and from their classroom. Adolescents with ID indicated that they wanted more friends. The participants’ suggestions for friendship formation were to meet people, starting a conversation, and smiling. They also identified out of school contact, conflict resolution, and gift giving as the means for friendship maintenance. Giving help, having more contact, and secret sharing were suggested as strategies for friendship development from their perspective. / Thesis (Master, Rehabilitation Science) -- Queen's University, 2008-01-02 18:32:11.662

People with an intellectual disability experience the same range of emotional and mental needs as the general population. However, in comparison to the wealth of general counselling research, there is a relative lack of research involving clients with an intellectual disability. In particular, there is a scarcity of research exploring the clients’ subjective experiences of counselling. This thesis therefore seeks to gain a better understanding of this under-explored area of counselling practice by inquiring of the two parties most intimately acquainted with the counselling process – clients and counsellors. Complementing the views of clients and counsellors, the views of support workers and key informants are also described. Using a qualitative case study methodology, six clients with an intellectual disability were interviewed about their subjective experiences of counselling. Interviews were also conducted with their counsellors and with nominated support people. These interviews took place over a period of several months. In addition, single interviews were conducted with four key informants in order to gain an understanding of the local health and disability support services. This thesis explores the participants’ understandings of disability and counselling, discusses similarities and differences to general counselling and describes the outcomes of the six clients in this study. This thesis highlights four systemic problems that complicate the delivery of effective counselling services: (a) poverty, (b) health inequalities, (c) difficulties in the disability support workforce, and (d) social stigma. The thesis also draws attention to the need for specialised education for both counsellors and the disability support workforce. Researchers are invited to pursue further research. Practising counsellors are invited to engage in a rewarding, albeit complicated, area of professional practice.

The association of constitutional chromosome imbalance in patients with intellectual disability with or without related dysmorphism and malformations is well established. The resolution of conventional cytogenetic examination is limited to imbalances of 5-10Mb. Patients with characteristic phenotypes which allude to a specific microdeletion or duplication syndrome may be investigated using locus specific fluorescent in situ hybridisation (FISH). Subtelomere FISH, a recently new improvement for cytogenetics screening, detects subtelomeric rearrangements in around 6% of patients with idiopathic disability. However it is evident that for these patients, most do not have a recurrent pattern of dysmorphism or malformations suggesting imbalance in a particular chromosome region. Array CGH has the potential to detect chromosome imbalances beyond that of current technology allowing the whole genome can be screened in a single hybridisation at a resolution limited only by the genomic distance between the arrayed target clones. The aim of this study was to develop a custom whole genome array and utilize this array to screen a number of diverse patient groups. Rather than immediately begin with the development of a whole genome array a smaller pilot study was initiated, in so enabling the efficacy of the methodology to be tested. A small clinical/ subtelomere array was designed and constructed to screen for cytogenetic imbalances within the first 5Mb of each chromosome end (excluding acrocentric chromosomes) together with the number of known clinically significant regions. This clinical/subtelomere array (chapter 3), was ulilised to map the extent of deletion and/or duplication in patients with previously determined subtelomere abnormalities. This was followed with the screening of a small group of patients with idiopathic intellectual disability (chapter 4). Novel Copy number changes were identified together with a number of changes determined to be non-pathogenic variants. The methodology used in the utilization of this array could determine copy changes in patients, however it became clearly evident that the effective resolution was compromised when a number of clones were shown to map to other sites of the genome or cross hybridise to multiple sites. With this knowledge the next stage of the project, a whole genome array, primarily constructed from a FISH validated clone set, reduced the possibility of mapping discrepancies. These FISH mapped clones did not give a even genomic coverage. All clones from this set were mapped using Ensembl resources. Any identified gaps (greater than 1Mb) were covered using clones from a second clone set (32K), giving a resolution of ~0.2-1Mb. Three diverse groups of patients were screened using the whole genome array. Using a novel scoring system which evaluated degree of intellectual disability/developmental delay, dysmorphism, presence of malformations and the presence of an apparently balanced cytogenetic rearrangement, twenty five patients with idiopathic disability were assessed. Four novel copy number changes were determined of which three were determined likely to contribute to the phenotype of the patient. The fourth patient is under investigation. Chapter 6 saw the application of the whole genome array to a second patient group; medically terminated pregnancies, in utero fetal deaths or newborn infants with one or more facial dysmorphism or fetal malformation. One potentially pathogenic copy number change was ascertained from this study. The third patient group, those with retractable epilepsy (chapter 7) showed two copy number changes both of which will require further follow up and investigation, including screening with a higher density array platform. The screening of more than seventy varied patients has shown the efficacy of these two custom platforms, to detect previously undetermined copy number changes. / Thesis (Ph.D.) -- University of Adelaide, School of Paediatrics and Reproductive Health, 2010

To date there have been few studies that have explored the relationship between life events and challenging behaviour( CB) in people with intellectual disabilities (ID). The present study is preceded by a literature review that first introduces the literature devoted to the understanding of risk factors associated with the development and maintenance of CB in people with ID. It then provides a flavour of the extensive venereal life events literature, by presenting meta-analytic and review studies that examine how life events impact on psychological well-being. It finally reviews life event studies that have so far occupied ID research. The literature review concludes with implications for future research and clinical interventions. This is followed by a research study that aims to explore the range of life events encountered by people with ID residing in a long stay residential hospital and ii. explore potential associations between life events and CB. To do this a correlational design was employed. Key respondent(nursing staff) well known to the participants provided information on known correlates of CB and life events experienced by the service-user over the previous 12 months. Results suggest that for the study population the life event domains of relationship issues and staff change provided a significant additional contribution to the prediction of CB once known 41 correlates of CB were controlled. The results are discussed in light of the findings. Limitations of the study are also discussed together with the future clinical and research implications of such findings. Finally the research paper is followed by a critical review that outlines the strengths and weaknesses of the study, as well as the process issues arising during the course of the research. Clinical implications and future directions are further discussed.

Background: Intellectual disability (ID) is described as a neurodevelopmental disorder which occurs during the developmental period and impacts intellectual as well as adaptive functioning across social, cognitive and practical domains. Approximately 3 percent of the South African population has mild to severe forms of ID. It is well described that caregivers of children with ID and other developmental disorders have higher levels of stress related to caring for their child than parents with typically developing children. However, little research has been reported in the South African context. Objectives: 1. To determine the nature and extent of self-reported symptoms of stress in caregivers of children with intellectual disabilities. 2. To establish which demographic variables and child factors are associated with carer stress. 3. To compare the nature and extent of self-reported stress and demographic and child variables associated with stress in carers of children with intellectual disability with the same measures reported by carers whose children are developing typically. Methods: This was a purposive, descriptive analytical study. Participants were 59 caregivers whose children attended Red Cross War Memorial Children’s Hospital outpatient clinics. The ID group comprised 35 caregivers of children with ID. The control Non-ID group had 24 caregivers of typically developing children. The children’s ages ranged from 2 to 10 years. Caregivers were administered a set of four questionnaires: a demographic questionnaire; the Parent Stress Index; the Hospital Anxiety and Depression Scale and the Aberrant Behaviour Checklist that rated the children’s behaviour. The data were analysed using IBM SPSS. Results: Both the ID and Non-ID groups showed elevated scores for self-reported anxiety. The ID group of caregivers reported significantly more problem behaviours in their children than the caregivers in the Non-ID group. Hyperactive behaviour predicted for depression in the caregiver ID group which also reported higher levels of stress and significantly higher levels of depression than the Non-ID group. 49 percent of the ID group caregivers reported levels of depression in the clinical range. Further, the ID group reported significantly more financial difficulties and also more appointments for their child at health facilities than the control group. Conclusion: Carers in this study setting experienced similar stresses and described similar child behavioural problems as those reported internationally. A significant finding was the high rate of caregivers of children with ID whose depression scores were in the clinical range. Child behaviour was a significant factor associated with caregiver stress and anxiety in both study groups and with depression in caregivers of children with ID. The study findings have implications for the mental health and behavioural support needs of both caregivers of typically developing children and caregivers of children with ID and for a range of services that provide this support.

Youth in detention centers often have intellectual disabilities. Correctional officers often they lack the knowledge and training needed to work with these youths. The purpose of this study was to determine how much knowledge and training correctional officers have about the youth that they work with, specifically, youth with intellectual disabilities. Four detention centers from the southeastern United States were chosen to participate in the study and the population of interest was comprised of correctional officers who work with youth in juvenile detention centers. Surveys were administered through a combination of pencil/paper and online administration as a result of institutional preferences. The results of this study suggested that correctional officers do not receive the level of education and training (formal, informal, on-the-job, or elsewhere) necessary to work with youth who have intellectual disabilities.

No description available.

This thesis examines issues surrounding access to records relating to people labelled with intellectual disability who have been institutionalized in Manitoba. It argues that the devaluation of people labelled with intellectual disabilities, together with the failures and difficulties in acquiring, preserving, describing and accessing records that describe the historical experiences of people labelled with intellectual disability who have been institutionalized, allows society to continue to seem like it does not know “the wrong they are doing with institutions.” In conclusion, this thesis advocates for means by which the experiences of people who have been institutionalized could be created, archived and more broadly available to the public. / February 2017

Thesis (M.S.)--Boston University / PLEASE NOTE: Boston University Libraries did not receive an Authorization To Manage form for this thesis or dissertation. It is therefore not openly accessible, though it may be available by request. If you are the author or principal advisor of this work and would like to request open access for it, please contact us at open-help@bu.edu. Thank you. / Adults with Intellectual Disability (ID) are at an elevated risk of osteoporosis based on lower peak bone mass and medical characteristics. However, there is little data as to how the medical characteristics affect screening or at what ages people are being screened. Methods: A secondary cross-sectional data analysis of was conducted of 4777 adults witl1 Intellectual Disability to determine characteristics associated with an elevated risk for osteoporosis and receipt of bone density screening. Hypotheses were that increasing age, use of antiseizure medication, living in a 24 hour residential setting, and receiving a flu vaccine increased the likelihood of screening. Bivariate analyses were initially performed, tl1en data were stratified by gender and logistic regressions were performed. Findings: 22.2% of the sample in this study received bone density screening. Bivariate odds ratios identified each of the hypothesized variables as significantly associated with receiving screening. Additionally, many of the covariates analyzed identified significant associations with receiving screening.Data were then stratified by gender and evaluated in a logistic regression. In men, increasing age, tl1e use of antiepileptic medication (adjusted odds ratio (OR) 1.5; 95% confidence interval (CI) 1.2-2.0), and receiving the flu vaccine (adjusted OR 1.5; 95% CI 1.2-2.0) were associated witl1 an increased likelihood of screening, controlling for confounding. Living in a 24 hour residential setting was not significantly associated with screening (adjusted OR 1.2; 95% CI 0.91-1.6). In women, increasing age, the use of antiepileptic medication (adjusted OR 1.5; 95% CI 1.2-1.9), receiving the flu vaccine (adjusted OR 1.4; 95% CI 1.1-1.8), and living in a 24 hour residential setting (adjusted OR 1.4; 95% CI 1.1 -1.8) were all significantly associated with receiving screening. A history of Down syndrome, noted to increase risk of osteoporosis, was associated with a decreased likehl1ood of screening (adjusted OR 0.67; 95% CI 0.4 7-0. 94) in women, although it was not a significant association in men. Conclusions: While most variables related to osteoporosis are associated with an increased likelihood of screening, screening rates among in adults witl1 ID were low. Additionally, men and women have differences in variables related to screening. Better education and improved awareness may increase rates. / 2031-01-02