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.

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

The purpose of this study was to describe the experiences of students with intellectual disability (ID) and their teachers throughout the implementation process of an augmentative and alternative communication (AAC) device. Two students and three teachers at an arts-based school for adults with developmental disabilities were trained by a speech and language pathologist on how to use the device. The students were selected by the teachers because they had limited ability to produce speech, and it was thought that they would benefit from using the device. The three teachers made up the school’s faculty, and the speech and language pathologist was selected based on her expertise working with people with developmental disabilities. Self-determination theory (Deci & Ryan, 1985) framed the study, and, it guided the observations and discussion of this thesis. Student experiences were explained through the lens of this theory, but teacher experiences were more applicable to Guskey’s (1989) model of teacher change. This framework was used to interpret the experiences of the teachers. Data were collected through direct observations and teacher journals throughout the implementation process, and semi-structured interviews, post-implementation. A total of 10, one-hour observations per student were conducted between January 15, 2013 and March 11, 2013; with one additional observation of an unplanned follow-up session that lasted one-and-a-half hours on May 8, 2013. The researcher observed student communication and engagement before, during, and after the device was brought into the class. The implementation steps included: introduction and experimentation with the AAC device in-class; teacher-only training; in-class student coaching and modeling; and withdrawal of SLP support. This study found that that there were practical and logistical challenges with AAC device implementation for both students and teachers. Limited time for in-class training, strategic planning, goal-setting, and financial resources, such as funds to hire supply teachers so that teachers could observe in-class training, were barriers to implementation. One student, more than the other, used the AAC device to communicate throughout the study. Recommendations emerging from the study included more purposeful advance planning, goal-setting, developing teacher pedagogical knowledge prior to implementation, and collectively-planned in-class training sessions for students and teachers. / Thesis (Master, Education) -- Queen's University, 2014-01-30 11:38:38.195

Background: As a result of the changes in support for adults with Intellectual Disabilities (ID) and the increasing emphasis on independent living within the community, individuals commonly live in their own homes with support provided by voluntary or private services. As a result, support staff play a huge role in the lives of adults with ID and are often the mediators of interventions aimed at reducing distress or the occurrence of challenging behaviour. Issues relating to the well-being of support staff and how they manage behaviours that challenge services are central to the quality of the lives of adults with ID. Method: A systematic review was carried out regarding interventions aimed at reducing stress felt by staff supporting adults with ID, with the aim of informing the clinical practice of psychologists that work with such staff groups. An empirical study employing the qualitative methodology of grounded theory was also conducted to explore the experiences of staff working with clinical psychologists outside of their organisation in the development of support guidelines aimed at reducing challenging behaviour. Results: Findings from the Systematic Review highlighted the lack of high quality intervention studies aimed at reducing stress in staff. Some tentative support was found for interventions based on Acceptance and Commitment Therapy and those taking a more practical problem-solving approach. The empirical study resulted in a tentative model within which the role of expectations was highlighted as key to staff’s experiences of working with professionals. Conclusion: Further research is required in order to identify the most effective ways to reduce stress experienced by staff working with adults with ID. The constructed theoretical model suggests ways in which psychologists can understand the experience of staff and has implications for their practice.

This is a sociological essay made by Johanna Friman. ”When it comes to sex” purpose is to understand the relation between individuals with intellectual disabilities sexuality (IID) and the  role adaption of staff members at group homes. The purpose is also to understand the meaning of attitudes in relation to role adaption and how staff members cooperation affect these roles. For the current essay I have used the dramaturgy perspective as a tool for the understanding of staff members role adoption. To understand the meaning of the sexuality amongst IID and as a completion to the dramaturgy perspective I have used the theory of sexual script as an implement. These theories has allowed me to understand role adaption in relation to sex and intimacy. The method that’s been used to gather information for the empirical material is mainly interviews. Observations has also been made mainly in purpose to get a deeper knowledge for the interpretation of the material from the interviews. The results of the study shows that staff members take on three different kinds of roles. The supportive role rises when the purpose is to support the sexuality of IID. The protective role rises when the purpose is to reduce sexual behaviour amongst IID to protect them. The last and third role is taken on by staff members when the purpose is to teach IID about acceptable sexual behavior.

Intellectual disability (ID) is categorised by a significant reduction in cognitive function and adaptive abilities that begin in childhood. ID is part of a heterogeneous group of neurodevelopmental conditions associated with impairment in developmental domains and a cause of particularly adverse socioeconomic impact worldwide. There have been many recent advances in identifying causative genetic mutations in previously unexplained ID cases. With these advances comes an increasing demand for understanding mechanisms underpinning these pathogenic pathways. In this PhD thesis, I have studied rare monogenic novel neurodevelopmental disorders associated with ID. The objective of the thesis was to model a subset of mutations associated with novel neurodevelopmental disorders in mice to demonstrate a causal link between mutation and phenotype and to further understand the mechanisms by which these mutations result in human neurodevelopmental disorders. In order to achieve this, I adopted a multi-phase approach. Firstly, I designed a phenotyping platform, by combining behavioural and cognitive tests with morphometric brain analysis and genome-wide transcriptional analysis. I then used this approach to study KPTN-related syndrome, a novel developmental disorder that to date has not been characterised in mice, successfully recapitulating the main phenotypes described in the patients. Moreover, I gained further insight into the underlying pathogenic mechanisms associated with the disorder, opening the possibility of a therapy that could treat some aspects of cognitive and morphological impairments identified in the patients with KPTN-related syndrome. Lastly, I determined whether such an approach could be scaled-up to study multiple novel neurodevelopmental disorders, each with a mutation associated with a haploinsufficient novel neurodevelopmental disorder. I identified specific phenotypes for each of the four mouse lines under investigation, providing a platform for comparison between several developmental disorders. These refinements contributed to a larger five-year project starting at the Sanger Institute, aimed at characterising a wider diversity of human neurodevelopmental disorders.