Dissertations / Theses on the topic 'Intellectual disability'
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Bleazard, Adele Venitia. "Sexuality and intellectual disability: Perspectives of young women with intellectual disability." Thesis, Stellenbosch : University of Stellenbosch, 2010. http://hdl.handle.net/10019.1/4006.
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Thesis (PhD (Educational Psychology))--University of Stellenbosch, 2010.ENGLISH ABSTRACT: This study focuses on the intersection of disability and gender: being intellectually disabled and being a young woman. It specifically, explores the lives of intellectually disabled young women and sexuality. This study attempts to explore the contributions that intellectually disabled young women can make to the understanding of the sexuality needs and concerns of young women with intellectual disability. It is an attempt to make public their needs and concerns regarding sexuality issues as they have been recognised to be the ultimate lost voices in disability research, and have historically been excluded in the production of sexuality knowledge. A mixed method approach is used, where the data for the research was produced during interviews with 21 participants between the ages of 18 and 23. A focus group discussion was also held. All the women were either current learners or past learners at a school for “mentally handicapped learners”. Ten mothers were interviewed with regard to their views on sexuality and their intellectually disabled daughters. A questionnaire was given to 12 teachers to complete as well. Involving mothers and teachers is an attempt to establish the dominant views of the significant persons and professionals in the lives of these young women, including those who are directly and indirectly responsible for their sexuality education. In interviews and the focus group, study participants discussed the various social messages they receive, as intellectually disabled persons, with regard to domains of sexuality: friendship, dating, and marriage. The participants gave insight into the levels of their knowledge with regards to sex and sexuality education, menstruation, contraception, pregnancy and childbirth, and sexually transmitted infections. The young women shared their predominantly negative experiences of being stereotyped, with some participants expressing their resentment. Their low levels of social, biological, and physiological sexuality knowledge make appropriate sexuality education a priority. The study concludes with recommendations regarding the type of sexuality education the young women propose and suggested responses for special schools.
AFRIKAANSE OPSOMMING: Hierdie studie focus op die kruispad van gestremdheid en geslag: om intellektueel gestremd en om ‘n jong vrou te wees. Dit ondersoek spesifiek die lewens van intellektuele gestremde jong vroue en seksualitiet. Hierdie studie poog om die bydraes te verken wat intellektueel gestremde jong vrouens kan maak om die seksualiteitsbehoeftes en bekommernisse van jong vrouens met intellektuele gestremdheid te verstaan. Dit is ‘n poging om hulle behoeftes en bekommernisse oor seksualitiet hoorbaar te maak omdat dit as die opperste verlore stem in navorsing oor gestremdheid uitgewys is, en hulle histrories van die generering van kennis oor seksualitiet uitgesluit is. Die benadering is ‘n gemengde metode waartydens data vir die navorsing gedurende onderhoude met 21 deelnemers tussen die ouderdomme van 18 en 23 jaar gegenereer is. ‘n Fokusgreopbespreking is ook gehou. Al die vroue is òf huidige òf vorige leerders van ‘n skool vir “versatndelike gestremde leerders”. Onderhode is met tien moeders gevoer ten opsigste van hulle beskouings oor seksualitiet en hulle verstandelik gestremde dogters. ‘n Vraelys is ook vir 12 onderwysers gegee om te voltooi. Die moeders en onderwysers is betrek in ‘n poging om die heersende beskouings van die betekenisvolle persone en professionele mense in die lewens van hierdie jong vrouens te bepaal, insluitend diegene vat direk en indirek vir hulle seksualiteitsopvoeding verantwoordelik is. Tydens die onderhoude en fokusgroepbespreking het die deelnemers aan die studie die onderskeie social boodskappe wat hulle as verstandelik gestremde persone kry, bespreek met verwysing na die domeine van seksualitiet: vriendskap, uitgaan en die huwelik. Die deelnemers het lig gewerp op hulle vlakke van kennis oor seks en seksualiteitsonderrig, mesntuasie, voorbehoeding, swangerskap en kindergeboorte, en seksueel oordraagbare infeksies. Die jong vroue het hul oorwegend negatiewe ervarings van stereotipering gedeel, en sommige deelnemers het hulle afkeer uitgespreek. Hulle lae vlakke van sosiale, biologiese en fisiologiese kennis van seksualiteit maak toepaslike seksualiteitsvoorligting ‘n prioriteit. Die studie sluit af met aanbevelings oor die tipe seksualiteitsopvoeding wat die jong vroue voorstel en stel wyses voor waarop spesiale skole kan reageer.
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Field, Barbara. "Intellectual Disability and Society." Thesis, The University of Sydney, 2012. http://hdl.handle.net/2123/9390.
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The aim of this thesis is to outline the story of intellectual disability from a medical perspective as experienced by the author during more than 40 years working in the NSW Health system. Most of the writing over the last 30 years is from a sociological perspective after the idea of normalization changed the philosophy of care, and medical perspectives have been largely absent. The first chapter provides an introduction and historical background to the concept of intellectual disability. The story over the centuries is one of parallels and conflicts in the medical and sociological discourses. The second chapter examines the representation of intellectual disability both in the symbolic sense in art, literature and film, and the political sense as advocacy and human rights and the effect of the social rights discourse on processes of inclusion and exclusion. The third chapter is an account of the history of intellectual disability in NSW, Australia since colonization, and the impact of the social rights movement on changes of policy and provision of services. The conclusion looks at the future and the structure of the Ideal Society. The thread, which runs throughout these aspects of intellectual disability and unites the themes, is that of changing discourses. New discourses emerge as others are silenced and the same discourse can also have different meanings at different times in history. The ideas were presented as papers at international meetings of the International Association for the Scientific Study of Intellectual Disability (IASSID): Foucault’s Power Knowledge Model applied to Genetic Screening. (Helsinki 1996); Intellectual Disability in Literature and Film. (Seattle 2000); Prejudice and Identity in Intellectual Disability. (Montpellier 2004);Intellectual Disability in Literature and Film was presented at Health Illness and Representation, The Association for Medical Humanities UK meeting (London 2006).
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Watts, Graeme H. "Intellectual disability and spirituality." Thesis, The University of Sydney, 2006. https://hdl.handle.net/2123/27915.
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Intellectual disability, and in particular profound intellectual disability, has an
impact on all aspects of a quality of life including that of spiritual development.
Some insight into this influence can be gained from a historical review of the
attitudes in general towards people with an intellectual disability. Such a review
may be especially pertinent when inferences can be drawn from a religious
context. References from the Bible through to contemporary sources present, at
best, a mixed record.
Contemporary responses from the church have taken the form of policies and
guidelines, as well as theological argument, encouraging the inclusion of people
with intellectual disability in many aspects of church life. Such policies support
programs both within and outside the church. In spite of such initiatives there
remains a sense of unease regarding the spiritual status of persons with a
disability and, in particular, those with an intellectual disability.
A field research study addressed the specific issue of the portrayal of disability in
the Bible. Given that for many, the Bible is a significant reference source, and for
some, literally conveying the word of God, it is a matter for some concern that a
majority of Biblical references to disability were perceived as being unfavourable.
Calls for a theology of disability are countered by a preference to find a place for
disability in an inclusive theology. An acceptance of disability as an integral part
of the human state has been supported by reflections on image Dei leading to
the concept of a Disabled God. A long-standing scholastic tradition in the church
has begun to respond to the influence which may be exerted by non-verbal, nonrational
symbolism. That such means of communication may have an influence
on the spiritual lives of people with an intellectual disability, is no more evident
than in participation in the sacraments, more particularly in the Eucharist.
A field research project focussed on possible modifications to the Eucharist such
that participation by persons with an intellectual disability may be enhanced.
Through omission of content, together with substantial editing and rewarding, a
service order was developed with the text supported by auditory, sensory and
symbolic input. For persons with a profound intellectual disability, their presence
and participation in the Eucharist epitomizes the hope of their spiritual journey.
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Louhiala, Pekka. "Preventing intellectual disability : ethical issues." Thesis, Swansea University, 2002. https://cronfa.swan.ac.uk/Record/cronfa42806.
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The thesis opens with four cases that demonstrate various aspects of the prevention of intellectual disability (ID). The following four chapters introduce ID and many related issues (Chapter 2), the concept of geneticisation (Chapter 3), the epidemiology of ID (Chapter 4) and the concept of prevention (Chapter 5). In Chapter 6 prenatal diagnosis and screening are examined thoroughly. The two major models, the reproductive autonomy model and the public health model, are described and scrutinised. For example, the questions of informed consent, screening as a request of the women involved, reassurance, concept of risk, locus of control and eugenics are critically discussed. Chapter 7 deals with genetic counselling in general and directive versus non-directive counselling in particular. Chapter 8 asks the question 'Why should ID be prevented?' Five arguments are presented and critically examined: the eugenic argument, the foetal- wastage argument, the societal burden argument, the family burden argument and the quality of life argument. In Chapter 9 Mary Ann Warren's multi-criterial theory of moral status is presented and applied to potential or actual individuals with or without intellectual disability. More practical issues are raised again in Chapter 10, which deals with the prevention of ID with respect to three syndromes. The conclusive chapter (II) returns to the cases described in the beginning.
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Nehring, Wendy M. "Intellectual Disability in the Family." Digital Commons @ East Tennessee State University, 2011. https://dc.etsu.edu/etsu-works/6711.
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Book Summary:What is unique about the process in the discussion of healthcare and interventions to use when working with families? What assessment tools provide guidance for healthcare providers as they determine interventions for families in their care? What are the changing dimensions of contemporary family life, and what impact do those dimensions have on health promotion for families? How is family healthcare changing in terms of practices, delivery systems, costs and insurance coverage?
Students are able to explore these questions and more in the Encyclopedia of Family Health. Approximately 350 signed articles written by experts from such varied fields as health and nursing, social and behavioral sciences, and policy provide authoritative, cross-disciplinary coverage. Entries examine theory, research and policy as they relate to family practice in a manner that is accessible and jargon-free. From ′Adolescent Suicide′ and ′Alternative Therapies′ to ′Visitation during Hospitalization′ and ′Weight Problems and Genetics′, this work provides coverage of a variety of issues within a family context. The Encyclopedia of Family Health provides a comprehensive summary of theory, research, practice, and policy on family health and wellness promotion for students and researchers.
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Wiseman, Roxanne Elizabeth. "Mapping the language of intellectual disability." Thesis, National Library of Canada = Bibliothèque nationale du Canada, 2000. http://www.collectionscanada.ca/obj/s4/f2/dsk1/tape3/PQDD_0016/MQ55548.pdf.
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Hickman, Ellie. "Understanding compassion in intellectual disability services." Thesis, Lancaster University, 2018. http://eprints.lancs.ac.uk/129784/.
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Section one of this thesis presents a systematic literature review which investigated the experiences of people with an intellectual disability of psychological talking therapy. Ten studies were included and reviewed. Eight main themes and three sub themes emerged. Developing new positive relationships along with learning new skills and confidentiality were important to people with intellectual disabilities. Negative aspects of therapy including both interpersonal problems with others in a group setting as well as process issues were difficult as was therapy itself. Clinical and theoretical implications are discussed. Section two reports the findings from a qualitative, thematic analysis of staff's understanding of the concept of compassion. Ten participants who directly worked with people with intellectual disabilities in community support setting were recruited and took part in semi-structured interviews. Four themes emerged. The themes from the research mapped onto the appraisal model of compassion that could be used by services to support a compassionate culture. The third section is the critical appraisal which provides reflections on the research process and a discussion of compassion in care. The fourth section contains the ethics application and approval documents for this thesis.
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Shead, Jennifer Louise. "Staff burnout in intellectual disability services." Thesis, Staffordshire University, 2014. http://eprints.staffs.ac.uk/2014/.
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For women with anorexia nervosa, control and routine are important in managing distress and maintaining a sense of self in challenging situations. The transition to motherhood is characterised by change and uncertainty. Women may struggle to integrate the demands of anorexia alongside the challenges of motherhood. The aim of this thesis was to review the literature regarding the experiences of pregnancy and motherhood for women with eating disorders and develop a grounded theory of the transition to motherhood for women with anorexia nervosa. The literature regarding experiences of pregnancy and motherhood with an eating disorder was reviewed. The findings suggested a trend for remission of eating disorder symptoms in pregnancy followed by relapse during the postpartum period. Women with eating disorders were most likely to experience depression and anxiety during the later stages of pregnancy and postpartum. The review highlighted how eating disorders impacted on women's ability to embrace motherhood and bond with their children. There was a paucity of research exploring the lived experience of motherhood for women with specific eating difficulties, most notably anorexia. A grounded theory was informed by the experiences of eight mothers with anorexia. A core process of breaking the cycle highlighted how women were attempting to make lasting positive changes. They achieved this by protecting their children from anorexia, exploring new perspectives, setting a good example to their children and battling temptation to succumb to anorexia. This study provides a unique insight into the experiences of mothers with anorexia. In the final chapter the research process is reflected upon. It is hoped that these findings will influence clinical practice and help professionals to better understand women's experiences.
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Levén, Anna. "Postponed Plans : Prospective Memory and Intellectual Disability." Doctoral thesis, Linköpings universitet, Institutet för handikappverksamhet (IHV), 2007. http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-10382.
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Avhandlingen handlar om prospektivt minne (PM) hos personer med utvecklingsstörning. PM syftar på att formulera intentioner och genomföra dessa någon gång i framtiden, antingen inom en definierad tidsram eller i samband med en specifik händelse. Frågeställningar: 1. Finns det en kvalitativ och kvantitativ skillnad mellan prospektivt minne hos personer med utvecklingsstörning och en kontrollgrupp? (Artikel I – II) 2. Hur ser sambandet mellan prospektivt minne, arbetsminne och episodiskt minne ut hos personer med utvecklingsstörning och, skiljer sig detta åt jämfört med kontrollgruppen? (Artikel II) 3. Vilka förutsättningar vid inkodning och hågkomst är kompatibla? (Artikel III) 4. På vilket sätt kan svag association mellan olika delar av information bidra till prospektiva minnesfel? (Artikel IV) 5. Går det att särskilja en hög- respektive lågpresterande grupp personer med utvecklingsstörning med avseende på prospektiv minnesprestation? (Artikel II) Personer med utvecklingsstörning begår fler prospektiva minnesfel än personer i kontrollgruppen. Motsvarande gruppskillnad finns inte för självskattat minne. Prospektiv minnesprestation är bättre med bilder jämfört med ord som prospektiva ledtrådar, mest tydligt för personer med utvecklingsstörning. Arbetsminneskapacitet visade ett samband med både prospektivt minne och antalet falska minnen i kognitivt krävande situationer, till exempel, situationer med flera parallella prospektiva minnesuppgifter. Falska minnen och prospektivt minne hade ett samband hos personer med utvecklingsstörning. Att felaktigt känna igen bilder med bara delvis bekanta delar och att känna igen prospektiva ledtrådar utan att komma ihåg själva intentionen hade ett samband hos personer med utvecklingsstörning. Personer med utvecklingsstörning var också sämre än kontrollgruppen på att upprepa tidsintervall. Detta kan till exempel bero på bristande episodiskt minne och begränsade strategier för att lösa den här typen av uppgifter. Resultaten diskuteras i relation till träning av prospektivt minne och val av hjälpmedel.This thesis deals with prospective memory (PM) in individuals with intellectual disability. The term refers to planning and executing actions that cannot be performed immediately and have to be stored in memory and retrieved either within a specified timeframe or to be associated with a specific event. Following research questions were explored: 1. Does prospective memory performance in the intellectual disability group differ quantitatively and qualitatively compared to a control group of individuals without intellectual disability? (Paper I – II) 2. What are the relations between prospective memory, working memory and episodic memory in individuals with intellectual disability, and how are these relations different from the relations found in individuals without intellectual disability? (Paper II) 3. What conditions constitute compatibility between encoding and retrieval of prospective memory tasks? (Paper III) 4. In what way might weak binding contribute to PM failure? (Paper IV) 5. Is it possible to identify high and low PM-performing groups of individuals with intellectual disability? (Paper II) The results of the studies demonstrated that individuals with intellectual disability commit more PM errors than individuals in the control group, despite similarities in self-rated memory. Pictures as PM cues improved PM performance in comparison to words in both groups. This may be important primarily for recognition of the PM cue, particularly in the intellectual disability group. As to working memory capacity, it also shows a relation to both PM performance and binding performance in cognitively demanding situations (e.g., tasks with multiple parallel PM tasks). Furthermore, it was found that binding is related to PM performance in the intellectual disability group as there is a relationship between feature errors and recognition of cues, though not retrieving the correct intention. Finally, time reproduction was found to be weak in the intellectual disability group compared to the control group. This may be due to, for example, weak episodic memory and limited strategies for solving this type of task. These findings are discussed in relation to PM training and PM aids.
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Levén, Anna. "Postponed plans : prospective memory and intellectual disability /." Örebro : Linköping : The Swedish Institute for Disability Research, Örebro University ; Department of Behavioural Sciences and Learning, Faculty of Arts and Science, Linköping University, 2007. http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-10382.
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Horsley, Bethan. "Empowerment in people with an intellectual disability." Thesis, Staffordshire University, 2018. http://eprints.staffs.ac.uk/4891/.
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Background: In 1971 the UK government changed the way services for people with an intellectual disability were delivered, moving from institutional environments to integrated care within the community (DoH, 1971). Since then, a number of government papers have built upon this movement across health and social care generally, as well as specifically in intellectual disabilities. This review will look at support staff involvement with people with an intellectual disability diagnosis and the promotion of empowerment to service users. Method: A literature review was done to investigate the question: “What is known about empowerment from health care professional’s perspective in intellectual disabilities”. Two databases were reviewed: EBSCO and Web of Science, eight papers were identified. Findings: Two main themes emerged from the papers; choice and control, and communication. Conclusions: The papers reviewed highlighted that there were times when service user’s choice and control were being respected by staff, but also times when staff ignored or stopped service users attempts to exert choice or control. The way staff communicated with service users was also important in the empowerment of service users. Different communication styles either allowed or restricted choice and control. Of importance is the decisions staff have to make about when to pursue interactions, when not to and the effect of this on the service user. Limitations, strengths and areas for further research are discussed.
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Lopes, Fátima Daniela Teixeira. "Genomic imbalances in patients with intellectual disability." Master's thesis, Universidade de Aveiro, 2011. http://hdl.handle.net/10773/7645.
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Mestrado em BiotecnologiaDevelopment delay/Intellectual disability (DD/ID) is a serious and life-long condition which represents a challenge for families and public health services. It is characterized by suboptimal functioning of the central nervous system resulting in limitations both in intellectual functioning and in adaptive behavior, and it is observed in approximately 2-3% of the population worldwide. Establishing the disease etiology is important for clinical management, genetic counseling and coping strategies of the families. Array-based comparative genomic hybridization technique (aCGH), also called molecular karyotyping (MC), allows us to directly measure genomic copy number variations between the patient and a control DNA. The whole genome of an individual is represented in a high-resolution “virtual karyotype”, allowing the detection of submicroscopic alterations, undetectable by standard or highresolution karyotyping techniques. In Portugal, the guidelines for testing patients with DD/ID indicate the Gbanding karyotyping in first place and, whenever the result is normal, testing for the most common single gene disorders (Fragile X, for instance), for subtelomeric rearrangements and with specific FISH probes. However, the latter technologies are not suitable for whole genome scans in routine diagnosis, both because of the lower resolution levels (the case of conventional karyotyping), the extensive time consumption and high costs (the FISH case). The introduction of aCGH should contribute to the etiological classification of a large proportion of the DD/ID patients as well as to conclude about the utility of using these technologies for diagnosis of idiopathic DD/ID in the clinical context.
O atraso mental (AM) é uma doença que apresenta desafios para a vida tanto nas famílias como na sociedade. É caracterizada por um funcionamento subóptimo do sistema nervoso central que manifesta limitações quer ao nível da capacidade intelectual quer do comportamento adaptativo e tem uma incidência de aproximadamente 2-3% de nados vivos em todo o mundo. A determinação da causa da doença é importante para o correcto encaminhamento clínico, aconselhamento genético e estratégias de coping a desenvolver pela família. A técnica de hibridação genómica comparativa (aCGH), também designada de cariótipo molecular (CM), permite medir variações no número de cópias entre o genoma do doente e de um controlo. A totalidade do genoma de um indivíduo é representado num cariótipo virtual de alta resolução, permitindo assim a detecção de alterações submicroscópicas indetectáveis por métodos de cariotipaem standard ou de alta resolução. Em Portugal, as recomendações para os testes genéticos a realizar num doente com AM indicam o cariótipo tradicional de bandas G como primeira abordagem e, sempre que o resultado seja negativo, a pesquisa relativa às patologias unigénicas mais comuns (Síndrome de X frágil, por exemplo), rearranjos subteloméricos e sondas de FISH específicas. No entanto, estas tecnologias não são aplicáveis para análise de todo o genoma no contexto de diagnóstico de rotina, tanto pela sua baixa resolução (caso do cariítpo convencional) como pela elevada laboriosidade e/ou custos monetários (caso do FISH). A introdução de aCGH pretende contribuir para a classificação etiológica de grande parte dos doentes com AM, assim como, concluir acerca da utilidade desta tecnologia para o diagnóstico de AM idiopático no contexto clínico.
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Cleaver, Shaun Robert. "Physical mobility and aging in intellectual disability." Thesis, Kingston, Ont. : [s.n.], 2007. http://hdl.handle.net/1974/673.
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Patja, Kristiina. "Life expectancy and mortality in intellectual disability." Helsinki : University of Helsinki, 2001. http://ethesis.helsinki.fi/julkaisut/laa/kliin/vk/patja/.
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Frawley, Patsie, and timpat@pacific net au. "Participation in Government Disability Advisory Bodies in Australia: An Intellectual Disability perspective." La Trobe University. School of Social Work and Social Policy, 2008. http://www.lib.latrobe.edu.au./thesis/public/adt-LTU20090122.114029.
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This qualitative study examined the participatory experiences of people with an intellectual disability as members of government disability advisory bodies in Australia. These forums are one of the strategies adopted by governments to enable people with an intellectual disability to participate in the formulation of social policy. Such opportunities have arisen from progressive policy that frames people with an intellectual disability as full citizens with equal rights to inclusion and participation in society.
Little research has considered how people with an intellectual disability experience the participatory opportunities that have grown from this recognition of their rights. This reflects the more traditional focus on their status and participation as consumers and service users. The central question of this study is how people with an intellectual disability experience participation in government advisory bodies, and how such forums can be inclusive and meaningful.
This study positions people with an intellectual disability as the experts about their own experiences by relying primarily on their first person accounts of their experiences. Ethnographic and case study methods were employed including in-depth interviews with the central participants, document analysis, observation of the work of the advisory bodies and interviews with others involved in advisory bodies. Analysis led to the development of a typology of participation that describes the political and personal orientations people have to participation.
The study found that structures and the processes used by advisory bodies can mediate people�s experiences; however more significantly, the experiences of people with intellectual disability are shaped by their perception of how they are regarded by others. Central to this is the efficacy of support based on the development of collegiate relationships, similar to the notion of civic friendship described by Reinders (2002), rather than support that is solely focussed on tangible accommodations
The study concludes that citizen participation bodies have not fully recognised the personal and political potential of members with an intellectual disability. It presents evidence that people with an intellectual disability are capable of this form of participation, can provide legitimate and informed perspectives on policy and can engage meaningfully, given full recognition of their capacity to participate as well as structures and processes that enable this.
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Frawley, Patsie. "Participation in government disability advisory bodies in Australia : an intellectual disability perspective /." Access full text, 2008. http://www.lib.latrobe.edu.au/thesis/public/adt-LTU20090122.114029/index.html.
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Thesis (Ph.D.) -- La Trobe University, 2008.Research. "A thesis submitted in total fulfilment of the requirements for the degree of Doctor of Philosophy [to the] School of Social Work and Social Policy, Faculty of Health Sciences, La Trobe University, Bundoora". Includes bibliographical references (leaves 302-318)
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Rillotta, Fiona. "Effects of an awareness program on attitudes of students without an intellectual disability towards persons with an intellectual disability /." Title page, table of contents and abstract only, 2004. http://web4.library.adelaide.edu.au/theses/09ARPS/09arpsr574.pdf.
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SANTAMBROGIO, JACOPO. "SPECIFIC COGNITIVE DYSFUNCTIONING AND VULNERABILITY TO SPECIFIC PSYCHOPATHOLOGY: A DESCRIPTIVE STUDY ON INTELLECTUAL DEVELOPMENTAL DISORDER (INTELLECTUAL DISABILITY)." Doctoral thesis, Università degli Studi di Milano-Bicocca, 2023. https://hdl.handle.net/10281/403047.
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Background
Il Disturbo dello Sviluppo Intellettivo (DSI) viene diagnosticato con test cognitivi e valutazioni del comportamento adattivo. Numerosi studi attestano un'elevata prevalenza di disturbi psichiatrici in comorbilità con DSI. Le comorbidità psichiatriche sono spesso sottostimate, ma poiché i comportamenti problema sono spesso presenti, sono sovra-medicate. La relazione tra specifiche disfunzioni cognitive e vulnerabilità psichiatrica non è stata ancora adeguatamente studiata nei casi di DSI, nonostante l'evidenza crescente di comuni alterazioni del neurosviluppo e un'elevata co-occorrenza. Il concetto che una specifica disfunzione cognitiva sia alla base di uno specifico disturbo psichiatrico può facilitare la comprensione della connessione tra alterazioni cognitive e vulnerabilità psicopatologica e può promuovere una maggiore accettazione delle disabilità intellettive e di altri disturbi del neurosviluppo, fornendo le basi per un cambio di paradigma da "QI al di sotto della media" alla “caratterizzazione neuropsicologica”.
Obiettivi
La presente ricerca mira a rivalutare un campione clinico con DSI nel profilo cognitivo, funzionamento adattivo e comorbidità psichiatriche e ad indagare la correlazione tra disfunzioni e pattern cognitivi specifici e la presenza di sintomi e sindromi psichiatrici specifici nei DSI. Sono stati valutati 120 individui con DSI provenienti da 3 strutture residenziali italiane da giugno 2021 ad agosto 2022. Sono stati divisi in due grupp: il primo gruppo, con maggiori risorse intellettive, è stato valutato utilizzando WAIS-IV o Leiter-3 e una batteria neuropsicologica (TMT, Stroop e TOL), in un secondo momento un caregiver è stato intervistato utilizzando la Vineland Adaptive Behavior Scale-II, SPAIDD-G e STA-DI per valutare rispettivamente, per ogni paziente, il comportamento adattivo, le comorbidità psichiatriche e la presenza di Disturbo dello Spettro Autistico (DdSA). Il secondo gruppo, composto da individui con DSI più grave, è stato valutato solo con test eterosomministrati (caregiver). Elaborazione statistica: calcolo degli indici di frequenza e correlazioni di Pearson.
Risultati
Il campione era composto da 90 maschi e 30 femmine, età media 57 anni, istituzionalizzati per un periodo medio di 36,44 anni. Il 52% non aveva istruzione, il 19% un diploma di scuola media. Diagnosi DSI: borderline 3%, lieve 16%, moderata 11%, moderato-grave 4%, grave 59%, profonda 0%. Dalle cartelle cliniche, la prevalenza di DdSA in comorbidità è l'11% ma con la rivalutazione alla STA-DI è aumentata al 29%. il 38% ha avuto un comportamento provocatorio; L'89% presentava comorbidità fisiche, il 58% comorbidità psichiatriche, il 56% psicosi. La rivalutazione diagnostica per le comorbidità psichiatriche (SPAIDD-G) ha individuato un numero significativo di disturbi ed ha rivelato che, nonostante la cartella clinica mostrasse una bassa prevalenza di diagnosi psichiatriche, era stata prescritta una quantità consistente di farmaci psicotropi, riflettendo forse la reale prevalenza di psicopatologia qui rivelata dallo strumento SPAIDD-G ma non adeguatamente riconosciuta nella routine clinica e/o erroneamente interpretata come comportamenti problema.
Le correlazioni di Pearson tra variabili cognitive e disturbi psichiatrici hanno mostrato risultati significativi.
Discussione e Conclusioni
Le valutazioni SPAIDD-G hanno evidenziato una maggiore prevalenza di psicopatologia (in particolare DdSA, disturbi dell'umore e ansia) rispetto a quanto riportato nelle cartelle cliniche. Questo dato supporta l'importanza di utilizzare strumenti di screening psicopatologici per migliorare il processo diagnostico nelle strutture residenziali per i casi di DSI, il che di conseguenza migliorerebbe le terapie psicofarmacologiche. La correlazione tra disfunzioni cognitive e vulnerabilità psicopatologica è da approfondire con ulteriori studi.Background: Intellectual Developmental Disorder (IDD) is diagnosed with cognitive tests and adaptive behaviour evaluations. There is increasing evidence of a high prevalence of psychiatric disorders comorbid with IDD, including papers on the relationship between adaptive behaviour and psychiatric disorders. Psychiatric comorbidities are often under-estimated, but as challenging behaviour is commonly present, they are over-medicated. The relationship between specific cognitive dysfunctions and psychiatric vulnerability has still not been adequately studied in cases of IDD, despite increasing evidence of common neurodevelopmental alterations and high co-occurrence. The concept that a specific cognitive dysfunction underlies a specific psychiatric disorder may facilitate understanding the connection between cognitive alterations and psychopathological vulnerability, and may provide the basis for a paradigm shift from “intellectually below average IQ” to “neuropsychological characterization”. Aims: The objective of this research was to reassess a clinical sample of IDD in cognitive profile, adaptive functioning and psychiatric comorbidities and investigating the correlation between specific cognitive dysfunctions and patterns and the presence of specific psychiatric symptoms and syndromes in IDD. 120 individuals with IDD from 3 Italian residential facilities were consecutively evaluated from June 2021 to August 2022. They were divided into two groups on the basis of a previous clinical evaluation by expert clinicians: the first group, with more intellectual resources, was evaluated using WAIS-IV or Leiter-3 scales, and a neuropsychological battery using the TMT, Stroop and TOL tests, after which a professional caregiver did individual interviews with them using the Vineland Adaptive Behavior Scale-II, SPAIDD-G, and STA-DI to evaluate their adaptive behaviour, psychiatric comorbidities and presence of ASD. The second group, composed of individuals with more severe IDD, was evaluated only with professional caregiver assessment tools. The data statistical processing was predominantly calculation of frequency and correlation indexes. Results: The sample was composed of 90 males and 30 females, mean age 57 years, institutionalized for a mean period of 36.44 years. 52% had no education, 19% a middle school diploma. IDD diagnoses: borderline 3%, mild 16%, moderate 11%, moderate-severe 4%, severe 59%, profound 0%. From the medical records, 11% had a comorbid ASD diagnosis, but with diagnostic ASD (STA-DI) re-assessment this increased to 29%. 38% had challenging behaviour; 89% presented physical comorbidities, 58% psychiatric comorbidities, 56% psychoses. The diagnostic re-assessment for psychiatric comorbidities (SPAIDD-G) identified a significant number of disorders and revealed that despite the medical records showed a low prevalence of psychiatric diagnoses, a consistent quantity of psychotropic drugs had been prescribed, possibly reflecting the real prevalence of psychopathology revealed here by the SPAIDD-G tool but not adequately recognized in clinical routine and/or misinterpreted as challenging behaviour. Pearson correlations between cognitive tests and psychopathological items present significative findings. Discussion and Conclusions: In conclusion, the SPAIDD-G evaluations revealed a greater prevalence of psychopathology than reported in the medical records. This finding supports the importance of using psychopathological screening tools to improve the diagnostic process in residential facilities for IDD cases, which would consequently improve the psychopharmacological therapies. They also revealed the need to further investigate the correlation between cognitive dysfunctions and psychopathological vulnerability, studying intelligence as a multi-component model and identifying specific behavioural and cognitive phenotypes in IDD cases.
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Jansen, Daniëlle Elizabeth Maria Carolina. "Integrated care for intellectual disability and multiple sclerosis." [S.l. : [Groningen : s.n.] ; University Library Groningen] [Host], 2006. http://irs.ub.rug.nl/ppn/292393431.
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Clegg, Jennifer. "Interactions and relationships in adults with intellectual disability." Thesis, University of Nottingham, 1990. http://eprints.nottingham.ac.uk/11065/.
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This research concerned the social experience of two groups of adults with intellectual disability (mental handicap), those with verbal skills who could describe their experience and those with profound disabilities whose needs were interpreted by carers. Conceptual issues have been discussed to provide a framework for understanding their relationships and also for understanding intellectual disability itself. Social constructionism, has influenced the investigations. Previous research shows that disabled people experience relatively little social contact regardless of their level of ability. Interactions and relationships were investigated so that practitioners aiming to improve intellectually disabled adults' social experience may have relevant information. It has been assumed that more interaction is better as it allows people to reflect upon themselves with regard to others, to construct themselves through their interactions. These investigations fall into two main sections, the first a discussion of attitudes toward self and others held by people who had, or did not have, a peer-group friend. Results suggested that further examination of the role of the self-concept in friendship formation would be fruitful and that people without a peer-group friend were similar to lonely non-disabled adults. The second section examines profound disability and contains a linked series of studies of adults' interactions with key workers. Results suggested that two interaction strategies used by staff were associated with increased positive responding from clients; that the developmental age of clients did not distinguish between them in their social responses to staff; that there was little evidence of turn-taking or the importance of staff making responses which follow the client's lead. Results were discussed in terms of their contribution to an alternative model for understanding profound disability. The project as a whole was discussed in terms of the interaction between method and conceptualisation and concludes with a number of recommendations for practitioners.
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Wood, Leah. "Resilience in parents of adults with intellectual disability." Thesis, University of Birmingham, 2015. http://etheses.bham.ac.uk//id/eprint/6330/.
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This thesis explores resilience in parents of adults with intellectual disability. It comprises two chapters. The first chapter is a systematic literature review which examines quantitative research reporting psychosocial outcomes of caring for an adult child with intellectual disability. From the 23 identified papers, the findings show that parents of adults with intellectual disability have significantly poorer psychosocial outcomes when compared to non-caregiving populations. However, further longitudinal research is needed to establish predictors of poor psychosocial outcomes in parents of adults with intellectual disability. The second chapter is an empirical qualitative study which explores the experience of caring for a child with Down syndrome across 50 years. Four main themes were discussed – early experiences and feelings of having child with Down syndrome, factors that enabled carers to cope with raising a child/sibling with Down syndrome, experience of caring for an adult with Down syndrome and positive experiences of caring for a child/sibling with Down syndrome. Overall, the study highlights the resilience of parents who care for a child with Down syndrome across their lifespan in their ability to adjust to the challenges of this role and draw on the positives of the experience.
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Murray, Aoife Maureen. "Investigating the role of ZDHHC9 in intellectual disability." Thesis, University of Cambridge, 2013. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.648223.
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Whitney, Gemma. "Personal experiences of living with an intellectual disability." Thesis, University of Hull, 2017. http://hydra.hull.ac.uk/resources/hull:16484.
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This portfolio thesis contains three separate parts; a systematic literature review, an empirical study and corresponding appendices. Part one is a systematic literature review, in which the theoretical, conceptual and empirical literature relating to the experiences of individuals with Intellectual Disabilities (ID) in the post-secondary transitional period is reviewed. A systematic database search was carried out which identified 11 papers suitable for review. Thematic synthesis was used to analyse the data and a quality assessment was completed. Four themes were derived from the data which were, ‘Transition’, ‘Influential roles’, ‘Role of students with ID’, and ‘Outcomes’. Implications of the findings and considerations for future review are discussed. Part two is an empirical paper, which explores the lived experiences of people with ID, utilising theories from Second Wave Positive Psychology and a Dual-System’s Model. Nine adults with ID were interviewed. Interpretive Phenomenological Analysis (IPA) was used to analyse the data. Three superordinate and six subthemes were identified. The superordinate themes were, ‘Identity’, ‘Managing Life’s Difficulties’, and ‘Approaches to Life’. Implications, considerations for future research, strengths and limitations are discussed. Part three comprises the appendices, which contain the approval letter from the Faculty of Health and Social Care Research Ethics Committee at the University of Hull, documents used in the empirical research, a reflective statement considering the research process and an epistemological statement.
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Mims, Pamela J., and Bree A. Jimenez. "Teaching Students with Moderate and Severe Intellectual Disability." Digital Commons @ East Tennessee State University, 2013. https://dc.etsu.edu/etsu-works/319.
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A Survival Guide for New Special Educators provides relevant, practical information for new special education teachers across a broad range of topic areas. Drawing on the latest research on special educator effectiveness and retention, this comprehensive, go-to resource addresses the most pressing needs of novice instructors, resource teachers, and inclusion specialists. Offers research-based, classroom-tested strategies for working with a variety of special needs students Covers everything from preparing for the new school year to behavior management, customizing curriculum, creating effective IEPs, and more Billingsley and Brownell are noted experts in special educator training and support
This highly practical book is filled with checklists, forms, and tools that special educators can use every day to help ensure that all special needs students get the rich, rewarding education they deserve.
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Snyder, Sarah, Victoria Knight, and Pamela J. Mims. "Teaching Students with Intellectual Disability to Read Text." Digital Commons @ East Tennessee State University, 2016. https://dc.etsu.edu/etsu-works/183.
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This session will provide a text comprehension research overview for students with intellectual disability (ID). The presenters will review the instructional strategies and text supports (accommodations) that have been used to improve student text comprehension, with emphasis on strategies that teachers can immediately implement, and discuss opportunities for future research. Learner Outcomes: • Participants will gain knowledge of the text comprehension research base, as well as explore practical issues related to researching text comprehension. • Participants will learn about the instructional strategies and supports that have been used to improve student text comprehension and how to implement these in their classrooms. • Participants will describe recommendations for implementing research-based instruction and supports into their practice.
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Turnbull, David John. "Towards a collaborative ethic in intellectual disability services." Thesis, Queensland University of Technology, 1998.
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This thesis examines collaboratively impoverished frameworks currently existing in services, and then presents a framework within which it is possible to work towards an ethically informed, collaborative engagement between people who have as a common interest, a person with an intellectual disability. The thesis explores three themes that are of great significance to both service providers and other participants in their relation to people with intellectual disability - those of personal identity, advocacy and self-advocacy. The relative impotence of service providers in being able to deal with structural problems concerning these themes, in the absence of a genuinely collaborative endeavor which is driven from an adequately resourced and motivated community base, is demonstrated. Critiques of services offered from philosophical positions are considered. Service models and philosophies adopted as a response to these critiques demonstrate, in their application, the difficulties that services have in operationalizing a pro-active ethical agenda. In considering these philosophies, the power and the role of services in constructing and maintaining devaluing and oppressive meanings associated with the phrase '0person with an intellectual disability' itself, is emphasised. Various ethical discourses are examined and it is shown that these, when undertaken within frameworks of understanding which take the autonomous, rational individual as the subject of the discourse, fail to offer sufficient guidance in the pursuit of the wellbeing of, and respect for, people with intellectual disability. This poses a central issue that any collaborative engagement between stakeholders needs to decide - the status as persons of people with intellectual disability.
The issue of ambivalence towards this status, which services seem to perpetuate, poses the central practical question: how is it possible to decisively resolve this ambivalence in favour of the full personhood and humanity of those who are labeled as having intellectual disability? A current service philosophy, Social role Valorisation (SRV), is discussed in considerable detail, to demonstrate the need for this philosophy to be situated in an explicitly ethical framework, in which personhood is acknowledged in all its strangeness, difference and relational diversity, if it is to be utilised collaboratively. The explicit socially normative under-pinning of SRV is shown to reinforce the 'non-person' status of those who fail to meet these normative criteria for acceptance. Thus SRV may on occasions be instrumentally directed to harmful outcomes. The intent of SRV is to protect the life of devalued people, as persons, so there is a need for a more explicitly ethical formulation. The contention of the thesis is that the nature of 'what is valued' with and for people with intellectual disability may only be determined collaboratively, in the context of relationships which give recognition to their intrinsic value as persons, not by reference to some abstract set of social norms. What this intrinsic value is however, can not be according to the attributes selected by some philosophers - autonomy and rationality - as being the essential defining characteristics of persons. Rather, intrinsic value must be a relational concept, derived from those who have a relationship with those with intellectual disability, directed to their respect and wellbeing. for a person with an intellectual disability, to be in relationship with people of such favourable dispositions is of vital importance. Yet it is also important that such people are afforded the recognition, from those less intimately involved, but who exercise power in the situation, that these relationships are the basis for defining social space and place for people who do not fit easily into the system. To be a person with intellectual disability therefore is dependent on the right to be in relationships of interdependency with others, and not be excluded socially as 'defective' because one is not autonomous. The nature of this interdependency, this anti-individualism, as a valid expression of humanity can only be supported through a collaborative engagement.
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Powney, Melanie. "Attachment and trauma in people with intellectual disabilities." Thesis, University of Manchester, 2014. https://www.research.manchester.ac.uk/portal/en/theses/attachment-and-trauma-in-people-with-intellectual-disabilities(865e3b4c-be4a-4f80-ba5b-154c647aba9d).html.
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This thesis explored attachment in individuals with intellectual disability (ID). It investigated the role that attachment may have in presenting difficulties, including trauma symptoms, which has a growing body of literature, particularly in people without ID. Paper 1 describes a systematic review of the available literature relating to the psychological well-being of young people with ID in the UK who are 'looked after children' (LAC) or who live away from their birth families. Evidence suggests that both LAC and people with ID, may be vulnerable to developing mental health difficulties. However, there is a paucity of research investigating the psychological well-being of young people with ID who are LAC or who live away from birth families. 17 studies were reviewed, which ranged between 21% and 71% in quality as measured by the QATSDD (Sirriyeh, Lawton, Gardner, & Armitage, 2012). . Only one study was found that directly focused on the psychological well-being of LAC with an ID. The available studies offered some insights into the prevalence, characteristics of young people with ID who are LAC or who live away from their birth families and some of the psychological difficulties they encounter. However, given the methodological limitations of the included studies, no firm conclusions could be drawn. Paper 2 describes an empirical study that investigated the relationship between attachment security and trauma symptoms in adults with ID. 27 staff and service users participated in the research. Service user participants completed a self-report questionnaire regarding trauma symptoms with the researcher and staff participants provided demographic information and completed questionnaires that measured attachment security, trauma symptoms, depressive mood and traumatic events in relation to the service user. No relationship was found between attachment security and trauma symptoms. However, it provided tentative evidence with respect to the type of traumatic events experienced by people with ID and of the prevalence of mental health difficulties in people with ID. There were however several methodological limitations, including a small sample size. Implications for future research and clinical practice are outlined. Paper 3 provides a critical and personally reflective account of undertaking the systematic review and empirical study as outlined above. Strengths and limitations of the research are interwoven throughout. Recommendations for future research and implications for practice are also considered.
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Aldakhil, Ali. "Exploring inclusion, disability and the label of intellectual disability : Saudi teachers' experiences and perspectives." Thesis, University of Sheffield, 2017. http://etheses.whiterose.ac.uk/18174/.
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This study aims to critically explore how Saudi teachers understand the phenomena of inclusion, disability and the label of intellectual disability. It also seeks to research the extent to which the two implemented models of inclusion/special education in Saudi mainstream schools respond to the academic and social requirements of disabled learners, to uncover the disabling barriers and to offer suggestions for ending or, at least minimising, inequalities and exclusion of children labelled disabled from and within Saudi mainstream schools. Drawing on theories from a range of disciplines, including educational psychology, critical disability studies and education theory, I explored these issues through conducting in-depth semi- structured interviews with 31 participant teachers on an individualised basis. My thematic analysis has generated four key findings. First, the vast majority of participant teachers have misconceptions around inclusion, disability and the label of intellectual disability. They conflate integration and inclusion, locate ‘the problem’ of disability within-child and view people labelled with intellectual disabilities as ‘unable’ thus less than human. Second, participant teachers have different views about the two models of inclusion/special education implemented in schools where they teach. They have positive viewpoints about the mainstream classrooms model but negative perspectives about the self-contained classrooms model. Third, the analysis also uncovers that mainstream schools where participant teachers teach are fettered with disabling barriers and practices and that the Saudi education system are bound up with ableism. Fourth, to eliminate or, at least reduce, inequalities and exclusion of people labelled disabled from and within Saudi mainstream schools, participant teachers suggest raising awareness, creating an inclusive space for all, reviewing, enforcing and developing inclusive policies and regulations and promoting the core values of inclusive education. I also offer further recommendations for the Saudi Ministry of Education to take into consideration in Chapter 8 (section 8.5).
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Hamilton, Arthur. "India and Intellectual Disability: An Intersectional Comparison of Disability Rights Law and Real Needs." Thesis, Université d'Ottawa / University of Ottawa, 2020. http://hdl.handle.net/10393/40282.
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Given its vast population, India has one of the highest absolute numbers of people with intellectual disability (PwIDs) in the world. Studies have placed the prevalence as high as 3.1% of children aged between 2 to 5 years and 5.2% of children aged between 6 to 9 years. India recently passed the Rights of Persons with Disabilities Act, 2016 (RPwD Act), to align itself with the United Nations Convention on the Rights of Persons with Disabilities. This thesis applied the complementary methods of the review of academic and grey literature, document analysis of the RPwD Act, and in-depth informant interviews to become the first full study on the extent to which the RPwD Act meets the needs of PwIDs. Drawing on the biopsychosocial model of disability and intersectional theory, the findings show that the RPwD Act only partially meets the needs of PwIDs. The RPwD Act does incorporate progressive elements such as affirmative action provisions in the labour market, measures to prevent unethical research on PwIDs, and steps toward inclusive education. However, the Act stipulates a disability certification process that remains mired in the medical model of disability and is mostly inaccessible in rural areas. It also continues the system of legal guardianship dating to the colonial era which deprives many PwIDs of legal capacity and leaves some of them confined to long-term institutions with highly inadequate levels of care. Other problems in the Act include inadequate provisions to provide privacy, reproductive rights and education, and protection from discrimination.
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Heikura, U. (Ulla). "Intellectual disability in the Northern Finland Birth Cohort 1986." Doctoral thesis, University of Oulu, 2008. http://urn.fi/urn:isbn:9789514287114.
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Abstract The objective of this study was to investigate intellectual disability (ID) in children, with focus on occurrence, associated biomedical and sociodemographic factors, probable psychiatric problems and temporal variations in the occurrence of ID and the associated factors in an interval of 20 years. The study population consisted of two birth cohorts of children born in northern Finland, the Northern Finland Birth Cohort 1986 (NFBC 1986, N = 9,432 live-born children) and the Northern Finland Birth Cohort 1966 (NFBC 1966, N = 12,058 live-born children). Temporal changes in ID were studied by comparing NFBC 1986 with NFBC 1966. The same definition of intellectual disability (intelligence quotient ≤70), time of follow-up (up to 11.5 years), case ascertainment methods and data sources were used. Data were collected from questionnaires, registers and records. In NFBC 1986 the incidence of ID was 12.62/1,000 by age 11.5 years and prevalence 11.23/1,000 live-born at age 11.5 years. Associated biomedical aetiology could be found in two thirds of the cases. Genetic disorders were the largest aetiological category (36.1%) associated with ID. Maternal disadvantage (unskilled worker, basic education only) had the largest impact on the incidence of ID, while among single independent factors, maternal prepregnancy obesity (body mass index ≥30) showed the highest risk for ID (OR 2.8, 95% CI 1.5, 5.3) in the offspring. According to the assessments by the teachers at school children with ID had 4.9 times more likely probable behavioural problems than their peers not having ID. In an interval of 20 years, there was no change in the incidence or in the prevalence of ID between NFBC 1986 and NFBC 1966. However, a shift occurred from more severe levels of ID towards mild ID, so that both the incidence and prevalence of mild ID increased by 50% whereas more severe ID decreased by 50%. Temporal changes appeared in the proportions of aetiological categories (NFBC 1986 vs. NFBC 1966) with a statistically significant decrease of Down syndrome and paranatally originating causes (traumas/asphyxia). The proportion of chromosomal disorders other than Down syndrome increased, as did malformations of the central nervous system. Among sociodemographic factors associated with ID, indicators of socio-economic disadvantage retained their status as having the largest impact on the incidence of ID. Over the 20 years, the mother being single, living in a remote area and mother's older age at time of delivery had lost their association with ID. Only one new maternal sociodemographic factor, prepregnancy obesity, had emerged as having an association with ID with a statistically significant difference between NFBC 1986 and NFBC 1966. In conclusion, these results indicate that although the occurrence of ID remained the same in northern Finland over a period of 20 years, temporal changes have taken place in the biomedical and sociodemographic factors contributing to the incidence and prevalence of ID. There are also factors that have retained their status as associated disadvantageous factors. Studies like this with repeatedly collected data in the same geographical area, describing the occurrence of ID, and analysing associated biomedical and sociodemographic factors, are valuable for evaluating developments in the health care and service system. They are also of value for future planning of services for individuals with IDTiivistelmä Tämän tutkimuksen tavoitteena oli selvittää kehitysvammaisuuden esiintyvyyttä lapsilla, siihen liittyviä lääketieteellisiä etiologisia ja sosiodemografisia tekijöitä, mahdollisia psykiatrisia ongelmia sekä kehitysvammaisuuden esiintyvyydessä ja siihen liittyvissä tekijöissä tapahtuneita muutoksia 20 vuoden aikana. Tutkimusjoukko muodostui kahden syntymäkohortin lapsista, jotka olivat syntyneet Pohjois-Suomessa, Pohjois-Suomen syntymäkohortti 1986 (NFBC 1986, N = 9432 elävänä syntynyttä lasta) ja Pohjois-Suomen syntymäkohortti 1966 (NFBC 1966, N = 12058 elävänä syntynyttä lasta). Kehitysvammaisuudessa tapahtuneita ajallisia muutoksia tutkittiin vertaamalla Pohjois-Suomen syntymäkohortti 1986:ta Pohjois-Suomen syntymäkohortti 1966:een. Tutkimuksessa käytettiin samaa kehitysvammaisuuden määritelmää (älykkyysosamäärä ≤70, seuranta-aika 11.5 vuoteen saakka), tiedonkeruun menetelmiä ja tietolähteitä. Tiedot kerättiin kyselylomakkeista, rekistereistä ja asiakirjoista. Pohjois-Suomen syntymäkohortti 1986:ssa kehitysvammaisuuden ilmaantuvuus oli 12.62/1000 11.5 vuoden ikään mennessä ja vallitsevuus 11.23/1000 11.5 vuoden iässä. Kehitysvammaisuuteen liittyvä lääketieteellinen etiologia pystyttiin selvittämään kahdessa kolmasosassa tapauksia. Geneettiset häiriöt muodostivat suurimman etiologisen luokan (36.1%). äitiin liittyvillä epäedullisilla sosiaalisilla tekijöillä (kouluttamaton työntekijä, vain peruskoulutus) oli suurin vaikutus kehitysvammaisuuden ilmaantuvuuteen, kun taas yksittäisistä sosiodemografisista tekijöistä korkein riski (vaarasuhde 2.8, luottamusväli 1.5, 5.3) oli äidin lihavuudella (painoindeksi ≥30) raskauden alussa. Koulussa opettajien arvioiden mukaan kehitysvammaisilla lapsilla esiintyi mahdollisia käytöshäiriöitä 4.9 kertaa useammin kuin ei-kehitysvammaisilla lapsilla. 20 vuoden aikana Pohjois-Suomen syntymäkohorttien 1986 ja 1966 välillä ei ollut tapahtunut muutoksia kehitysvammaisuuden kokonaisilmaantuvuudessa eikä -vallitsevuudessa. Kuitenkin tuli esiin siirtymä vaikeammasta lievempään asteeseen siten, etta lievän kehitysvammaisuuden ilmaantuvuus ja vallitsevuus lisääntyivät noin 50%, kun taas vaikeamman väheni 50%. Lääketieteellisten etiologisten luokkien osuuksissa tuli esiin ajallisia muutoksia (Pohjois-Suomen syntymäkohortti 1986 vs. Pohjois-Suomen syntymäkohortti 1966) siten, että Downin syndrooman sekä syntymän aikaan ajoittuvan vamman ja hapenpuutteen osuudet vähenivät tilastollisesti merkitsevästi. Keskushermoston epämuodostumien sekä muiden kromosomihäiriöiden kuin Downin syndrooman osuudet kasvoivat. Kehitysvammaisuuteen liittyvistä sosiodemografisista tekijöistä sosioekonomisen huono-osaisuuden osoittimet säilyttivät asemansa suurimpana ryhmänä. 20 vuoden aikana äidin naimattomuus, asuminen syrjäseudulla sekä korkeampi ikä lapsen syntymän aikaan olivat menettäneet yhteytensä kehitysvammaisuuteen. Pohjois-Suomen syntymäkohortti 1986:n ja Pohjois-Suomen syntymäkohortti 1966:n välillä tuli esiin vain yksi uusi kehitysvammaisuuteen tilastollisesti merkitsevästi liittyvä sosiodemografinen tekijä, äidin lihavuus raskauden alussa. Yhteevetona voidaan todeta, etta vaikka kehitysvammaisuuden kokonaisesiintyvyys oli pysynyt samana Pohjois-Suomessa 20 vuoden aikana niin esiintyvyyteen liittyvät etiologiset ja sosiodemografiset tekijät olivat osittain muuttuneet. Tämänkaltaiset tutkimukset, joissa peräkkäisinä ajanjaksoina kerätään tietoja samalla maantieteellisellä alueella ja jotka kuvaavat kehitysvammaisuuden esiintyvyyttä sekä analysoivat siihen liittyviä lääketieteellisiä ja sosiodemografisia tekijoitä, ovat hyödyllisiä arvioitaessa terveydenhoidossa ja palvelujärjestelmässä tapahtunutta kehitystä. Niitä voidaan hyödyntää myös suunniteltaessa tulevaisuudessa palveluja kehitysvammaisille henkilöille
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Sessions, Jo. "Social cognitive deficits in offenders with an intellectual disability." Thesis, University of Sheffield, 2006. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.434452.
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Banes, Jonathan. "Young offenders with intellectual disability : findings from focus groups." Thesis, University of Leeds, 2005. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.422999.
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Pickard, Matthew. "Diagnostic Overshadowing, Essentialism, and Intellectual Disability| Lay Persons' Perceptions." Thesis, University of Central Arkansas, 2018. http://pqdtopen.proquest.com/#viewpdf?dispub=10615749.
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This study examined if diagnostic overshadowing occurred with lay people in regard to individuals with an intellectual disability, as well as investigating how lay people essentialize different categories. It was hypothesized that essentialistic thinking could be offered as a partial explanation for diagnostic overshadowing because certain mental health disorders would be categorized as having a strong, unchangeable biological component to them. Three hundred and thirty undergraduate general psychology students from the University of Central Arkansas completed the Essentialism Belief Scale on nine different concepts, read different case descriptions of an individual with or without an intellectual disorder, and gave their impressions of the individual as experiencing anxiety, depression, and if the person had an intellectual disability. Contrary to expectation, lay people did not demonstrate diagnostic overshadowing. Therefore, the relationship between essentialistic thinking and diagnostic overshadowing could not be confirmed and suggests that diagnostic overshadowing may occur for reasons other than essentialistic thinking. Interestingly, when essentialistic thinking was analyzed using a principal components analysis, a three-factor solution for essentialistic thinking was found, accounting for 72.22% of the variance, with the three factors appearing to demonstrate a biological, non-biological, and mental health grouping.
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Paech, Susan Elisabeth, and spaech@vtown com au. "TOTALLY DIFFERENT: AN ETHNOGRAPHIC ACCOUNT OF INTELLECTUAL DISABILITY NURSING." Flinders University. Medicine, 2007. http://catalogue.flinders.edu.au./local/adt/public/adt-SFU20090918.161221.
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This study adopted an ethnographic approach to examine the role of the Registered Nurse (RN) in the intellectual disability sector. The research setting (The Centre) is a residential facility for clients with intellectual disability in the northern suburbs of Adelaide that opened in 1971 and was similar to a hospital with the same hierarchy of nursing. Mental deficiency nurse training was conducted there until the 1990s but that qualification is no longer recognised. The Centre is under the umbrella of a large state disability organisation that is in the process of moving clients of the service from institutions (the Centre) to community living options such as group homes.
The cessation of mental deficiency nurse training and the introduction of deinstitutionalisation were considered to impact on client health and in the late 1990s a 24 hour nursing service was commenced. There was strong anecdotal evidence the service should be evaluated. A review of the literature found some research had been conducted in overseas countries with a focus on deinstitutionalisation but with a paucity of interest in the role of the RN, particularly in Australia.
Ethnography, first used in anthropology as a way of describing different cultures, was chosen as the research methodology because the researcher wanted to discover how the culture influenced the role of the RN. The researcher is an RN employed in the area. As an ethnographer and participant observer, the researcher became the data collection instrument. The entire culture is considered to be the sample in ethnography and data took the form of hundreds of hours of field note entries and interview transcripts.
Following analysis, the findings were presented in themes answering the research question which was in two parts. The first from the perspective of the nurse, client and other health care professionals, what constitutes intellectual disability nursing? and secondly what are the every day rituals, norms and patterns within the disability culture that shape and influence disability nursing for the Registered Nurse?.
Caring for the client who is institutionalised, The RN in the disability sector having certain qualities, Working within a different paradigm, Having to assume responsibility for large numbers of unregulated workers, Having to work alongside many professional groups and Having different educational needs are themes which describe the role. Themes describe the diversity of the role and in describing the registered intellectual disability nurse as different the role is compared with that of the nurse in other settings. The current research revealed there is a need for more health related education for unregulated workers and specific intellectual disability education for registered and enrolled nurses.
Themes that answer the second part of the research question are hierarchical structure, the Registered Nurse's position and role confusion. The non-nursing management at the top of the hierarchical ladder was found to significantly limit the role of the RN who was afforded no opportunity for leadership. Confusion over the RN's role and indeed individual workers' roles was observed at all levels. Findings suggest much stronger nursing leadership is required to provide advocacy and holistic care for the client and education for the carer. An outcome of the current research was the development of a model for intellectual disability nursing (see Table 8-1).
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Marchbanks, Paul R. Taylor Beverly Thornton Weldon. "Intimations of intellectual disability in nineteenth-century British literature." Chapel Hill, N.C. : University of North Carolina at Chapel Hill, 2006. http://dc.lib.unc.edu/u?/etd,83.
Full textAbstract:
Thesis (Ph. D.)--University of North Carolina at Chapel Hill, 2006.Title from electronic title page (viewed Oct. 10, 2007). "... in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the Department of English." Discipline: English; Department/School: English.
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Speers, Peter David. "Physical fitness and intellectual disability : a grounded research study." Thesis, University of British Columbia, 2013. http://hdl.handle.net/2429/44675.
Full textAbstract:
This study set out to discover what social processes effect the physical fitness choices of people with intellectual disabilities. Within a constructionist grounded theory framework, I explored participants’ experiences with physical fitness and exercise activities. I was interested in how the participants learned about fitness and health related behaviors, who participated in these activities, and what their experiences meant to them. I also wanted to learn what barriers they met in participating in their chosen activities. Twenty-six individuals with intellectual disabilities living in Victoria, British Columbia participated in this research. The participants lived in a variety of community settings ranging from independent to semi-independent, home share and group homes. They ranged in age from 20 to 67 years. The data revealed how fitness and exercise choices were interwoven with the participants lived experience as a whole. The influence of personal relationships in the fitness choices and activity levels of participants was a dominant theme. Personal relationships played a key role in the micro or proximal social processes that effected fitness choices of the participants. On the micro level the results produced three models of social interaction that captured the main influences on participant choices of fitness activities. A macro analysis accompanies the interpretation of data. This second tier of analysis extends the research to take into account the larger socio-cultural forces at play. Here I combine Foucault’s notion of the governmentality of difficult populations with a critical look at neoliberal social and political philosophy to paint the back drop into which the micro relationships and social processes depicted in the three models are set. Throughout I kept the words of study s uppermost in my mind. The findings are discussed in relation to existing empirical literature on physical fitness and intellectual disabilities. The findings suggest that success in engaging people with intellectual disabilities in fitness activities requires an understanding of their fitness histories and involvement of people in their close social networks. (Key words: physical fitness, developmental disability/ intellectual disability; mental retardation and physical well-being; developmental disability/intellectual disability/mental retardation.).
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Echeverria, Francia. "Reducing Rapid Eating in Adults with an Intellectual Disability." Scholar Commons, 2011. http://scholarcommons.usf.edu/etd/3084.
Full textAbstract:
Rapid eating is a frequent problem among individuals with developmental disabilities that can pose a threat to health. The following study sought to reduce the rate of eating behaviors in two adults diagnosed with moderate intellectual disability. Assessment of eating rate took place in the participants' group homes during lunch or dinner meals. Procedures included the use of vibrating pagers with and without verbal prompts to prompt eating and prevent rapid eating behaviors. Results demonstrate a clear reduction in rate of eating when using vibrating pagers and verbal prompts for both participants.
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Illingworth, Josephine Leah. "Seizure precipitants in people with epilepsy and intellectual disability." Thesis, University of Cambridge, 2015. https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.708618.
Full text
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Kells, Mark. "The psychometric assessment of offenders with an intellectual disability." Thesis, University of Birmingham, 2011. http://etheses.bham.ac.uk//id/eprint/3014/.
Full textAbstract:
Two psychometric assessments, developed for use with mainstream offenders of normal intelligence, measuring impulsivity and locus of control respectively, were adapted for use with offenders with an intellectual disability (ID). The language and sentence structures used were simplified, and the content of questions was changed to provide contexts that were familiar to detained offenders with ID. Data generated from the responses of 47 male offenders with ID indicated that both tools demonstrated good levels of reliability, in terms of internal consistency, test re-test reliability and correlations with other tools measuring related concepts . Both instruments were found not to differentiate detained offenders with ID (n=47) from two control groups of non-offenders with ID (n=2x46). In addition, an examination of the utility of the impulsivity tool in predicting institutional aggression using receiver operator characteristics, was examined. Two risk assessments, the PCL-R (Hare, 2003) and the HCR-20 (Webster, Douglas, Eaves & Hart, 1997), were also included in this study. The results indicated that the impulsivity measure did not predict institutional aggression. However, the HCR-20 and its sub-scales and the PCL-R and its factors both provided moderate and strong predictive ability, particularly in relation to physical aggression.
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Mattioli, Francesca. "Identification of novel genetic causes of monogenic intellectual disability." Thesis, Strasbourg, 2018. http://www.theses.fr/2018STRAJ035/document.
Full textAbstract:
La déficience intellectuelle (DI) est une trouble du neuro développement caractérisée par une extrême hétérogénéité génétique, avec plus de 700 gènes impliqués dans des formes monogéniques de DI. Cependant un nombre important de gènes restent encore à identifier et les mécanismes physiopathologiques de ces maladies neuro développementales restent encore à comprendre. Mon travail de doctorat a consisté à identifier de nouvelles causes génétiques impliquées dans la DI. En utilisant différentes techniques de séquençage de nouvelle génération, j’ai pu augmenter le taux de diagnostic chez les patients avec DI et identifié plusieurs nouvelles mutations (dans AUTS2, THOC6, etc) et nouveaux gènes (BRPF1, NOVA2, etc) impliqués dans la DI. Pour les moins caractérisés, j'ai effectué des investigations fonctionnelles pour valider leur pathogénicité, caractériser les mécanismes moléculaires qu'ils affectent et identifier leur rôle dans cette maladie. Mes travaux de doctorat permettront d’améliorer et d’accélérer la possibilité d’obtenir un diagnostic moléculaire qui donnera accès à un meilleur suivi et à une meilleure prise en charge pour les patients. Cela permettra également de mieux comprendre les mécanismes physiopathologiques impliqués dans ces troubles neuro développementaux. Ces connaissances aideront éventuellement à identifier de nouvelles cibles thérapeutiquesIntellectual disability (ID) is a group of neurodevelopmental disorders characterized by an extreme genetic heterogeneity, with more than 700 genes currently implicated in Mendelian forms of ID but still some are not yet identified. My PhD project investigates the genetic causes of these monogenic ID by using and combining different NGS techniques. By using this strategy, I reached a relative high diagnostic yield and identified several novel mutations (in AUTS2, THOC6) and genes (BRPF1, NOVA2, etc) involved in ID. For the less characterized ones, I performed functional investigations to prove their pathogenicity, delineate the molecular mechanisms altered and identify their role in this disease. Overall, this work improved and provided new strategies to increase the molecular diagnosis in patients with ID, which is important for their healthcare and better management. Furthermore, the identification and the characterization of novel mutations and genes implicated in ID better delineate the implicated pathophysiological mechanisms, opening the way to potential therapeutic targets
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Mayton, Michael R., Stacy L. Carter, and John J. Wheeler. "Intrusiveness of Behavioral Treatments for Adults with Intellectual Disability." Digital Commons @ East Tennessee State University, 2014. https://dc.etsu.edu/etsu-works/316.
Full textAbstract:
The current study examined treatment intrusiveness within behavior intervention programs developed for adults with intellectual disability (ID). Behavior analysts provided demographic information about themselves, their adult clients with ID, and their clients’ behavior intervention plans, and they completed an online version of the Treatment Intrusiveness Measure (Carter et al., 2009), an instrument that provides a Base Level Intrusiveness Score (BLIS; a score computed across five areas of categorization, such as, Health and Safety) and a Modified Level of Intrusiveness Score (MLIS), which assesses the presence or absence of intrusiveness-reducing practices. Among other findings, various statistical analyses revealed (a) a significant difference between BLIS and modified (BLIS minus MLIS) intrusiveness scores, (b) the practices within which most of the intrusiveness was concentrated within behavioral treatment programs, and (c) the least- and most-utilized intrusiveness-reducing practices. Implications are provided to assist professionals working with adults with ID who engage in challenging behavior and are supported through behavior intervention services.
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Donohue, Dana Karen. "Self-concept in Children with Intellectual Disabilities." Digital Archive @ GSU, 2008. http://digitalarchive.gsu.edu/psych_theses/46.
Full textAbstract:
Self-concept, or feelings about oneself, encompasses various areas including social and academic domains and has been suggested to be a predictor and mediator of other outcomes (Bryne, 1996). In this study, the relationships between achievement, intelligence scores, and self-concept in children with mild intellectual disabilities were examined. Self-concept and WISC verbal intelligence scores evidenced significant relationships. Additionally, relationships were demonstrated between gains in achievement and higher ratings of self-concept. These results suggest that relationships exist between intelligence, achievement, and self-concept in elementary school children with MID. Specifically, a positive relationship was demonstrated between achievement gains and self-concept. Associations between intelligence and self-concept also were demonstrated, where higher intelligence scores were related to both lower nonacademic self-concept and higher cognitive self-concept.
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Goldberg, Cole. "“Life’s About Choices”: Exploring the everyday occupational choices of young adults with intellectual disability in a community context in South Africa." Master's thesis, Faculty of Health Sciences, 2019. http://hdl.handle.net/11427/31382.
Full textAbstract:
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.
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Nicoll, Madonna A. ""I'm a person of value": People with intellectual disability negotiating paid support relationships." Thesis, Queensland University of Technology, 2022. https://eprints.qut.edu.au/232631/1/Madonna_Nicoll_Thesis.pdf.
Full textAbstract:
Changing philosophies affect change in how people with disability are supported. In Australia, paid workers provide most formal services in people’s homes. However, the experience of support from the perspective of those accessing services is concealed. This qualitative research analysed accounts of people with intellectual disability to reveal their experiences of support. Contrasting dominant social narratives of dependence, ‘being a person of value’ was a central theme in the perception and presentation of self in support relationships. These findings call for support agencies to offer greater respect, person-centredness, choice and control to people with intellectual disability.
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Klotz, Jani Frances. "Denying intimacy: the role of reason and institutional order in the lives of people with an intellectual disability." Thesis, The University of Sydney, 2001. http://hdl.handle.net/2123/513.
Full textAbstract:
This thesis explores differences in the ways that intellectually disabled people are perceived, interpreted and related to within a Western context. Through a comparison of familial and institutionalised forms of relatedness, it examines the interrelation between these differences and the consequences that they have for either denying or acknowledging severely intellectually disabled people's capacities for sociality. Drawing on Carrithers' (1992) concept of sociality and mutuality, and Wittgenstein's (1953) notion of language games, the thesis analyses the means by which a meaningful and shared existence with intellectually disabled people can be negotiated and developed. Although limited and restricted in their capacities for symbolic expression, such people do have modalities of symbolic life upon which sociality can be built. By analysing the symbolic practices utilised by my three profoundly intellectually disabled siblings, I seek to show how relationships across the difference of intellectual disability are able to be symbolically mediated and negotiated. I argue that it is necessary to engage in relations of mutual interdependence in order to even recognise and perceive these practices as purposeful and meaningful. The mutuality that ensues requires a level of intimacy, empathy and commitment that is not easily sustainable, but which is necessary for the maintenance of intellectually disabled people's existence as social beings. These intimate relations are contrasted with clinical and institutional forms of relatedness, both of which have been informed and shaped by a symbolic scheme of reason and normality. This symbolic scheme associates a capacity for reason with normal humanness, where reason is identified as particular abstract, linguistic, mental practices that are then deemed necessary for sociality. These are what intelligence tests measure, and it is through such assessments that intellectually disabled people are rendered asocial. The pathologising of intellectual disability as an abnormal embodiment, and the clinical tendency to search only for deficits in functioning and ability, has led to a denial or ignorance of intellectually disabled people's abilities to be the independent sustainers and authors of mutuality and sociality. I draw on my family's medical notes, records from the institution where two of my siblings were sent to live, as well as observations made during twelve months of fieldwork with a group of intellectually disabled people attending an activities centre, and either living in community group homes or with their families, to elucidate the ways in which such interpretations of intellectual disability become instituted into daily practice. The instituting of training and management practices within day centres, group homes and institutions for the intellectually disabled are a consequence of the perception that intellectually disabled people have no capacity for sociality as they are. So too are the legal and structural obligations that inform the forms of relatedness that staff have with the intellectually disabled people with whom they work. These relations are based on separation and disengagement rather than mutuality and intimacy. The aim in these institutionalised environments is to instil in such people a range of normative social, domestic and vocational skills as though it is upon these that their capacity as social beings are dependent. As a result, the symbolic practices and dispositional behaviours through which intellectually disabled people express themselves are not recognised as such, nor are they engaged with. This undermines intellectually disabled people's capacity to be joint contributors to social life in a way which incorporates their differences rather than trying to transform them.
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Klotz, Jani Frances. "Denying intimacy: the role of reason and institutional order in the lives of people with an intellectual disability." University of Sydney. Anthropology, 2001. http://hdl.handle.net/2123/513.
Full textAbstract:
This thesis explores differences in the ways that intellectually disabled people are perceived, interpreted and related to within a Western context. Through a comparison of familial and institutionalised forms of relatedness, it examines the interrelation between these differences and the consequences that they have for either denying or acknowledging severely intellectually disabled people's capacities for sociality. Drawing on Carrithers' (1992) concept of sociality and mutuality, and Wittgenstein's (1953) notion of language games, the thesis analyses the means by which a meaningful and shared existence with intellectually disabled people can be negotiated and developed. Although limited and restricted in their capacities for symbolic expression, such people do have modalities of symbolic life upon which sociality can be built. By analysing the symbolic practices utilised by my three profoundly intellectually disabled siblings, I seek to show how relationships across the difference of intellectual disability are able to be symbolically mediated and negotiated. I argue that it is necessary to engage in relations of mutual interdependence in order to even recognise and perceive these practices as purposeful and meaningful. The mutuality that ensues requires a level of intimacy, empathy and commitment that is not easily sustainable, but which is necessary for the maintenance of intellectually disabled people's existence as social beings. These intimate relations are contrasted with clinical and institutional forms of relatedness, both of which have been informed and shaped by a symbolic scheme of reason and normality. This symbolic scheme associates a capacity for reason with normal humanness, where reason is identified as particular abstract, linguistic, mental practices that are then deemed necessary for sociality. These are what intelligence tests measure, and it is through such assessments that intellectually disabled people are rendered asocial. The pathologising of intellectual disability as an abnormal embodiment, and the clinical tendency to search only for deficits in functioning and ability, has led to a denial or ignorance of intellectually disabled people's abilities to be the independent sustainers and authors of mutuality and sociality. I draw on my family's medical notes, records from the institution where two of my siblings were sent to live, as well as observations made during twelve months of fieldwork with a group of intellectually disabled people attending an activities centre, and either living in community group homes or with their families, to elucidate the ways in which such interpretations of intellectual disability become instituted into daily practice. The instituting of training and management practices within day centres, group homes and institutions for the intellectually disabled are a consequence of the perception that intellectually disabled people have no capacity for sociality as they are. So too are the legal and structural obligations that inform the forms of relatedness that staff have with the intellectually disabled people with whom they work. These relations are based on separation and disengagement rather than mutuality and intimacy. The aim in these institutionalised environments is to instil in such people a range of normative social, domestic and vocational skills as though it is upon these that their capacity as social beings are dependent. As a result, the symbolic practices and dispositional behaviours through which intellectually disabled people express themselves are not recognised as such, nor are they engaged with. This undermines intellectually disabled people's capacity to be joint contributors to social life in a way which incorporates their differences rather than trying to transform them.
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Ashworth, Melody. "Pica among Persons with Intellectual Disability: Prevalence, Correlates, and Interventions." Thesis, University of Waterloo, 2006. http://hdl.handle.net/10012/2805.
Full textAbstract:
Background: Individuals with intellectual disabilities (ID) have a higher prevalence of comorbid psychiatric disorders and challenging behaviours compared to the general population. Though less common, one area of concern among those with ID is pica (the ingestion of inedible substances). To date, there is little knowledge of pica, particularly with respect to its risk factors and social consequences. The closure of Ontario's three remaining facilities by 2009 underscores the importance of having knowledge of complex behaviours such as pica for improving supports and services in the community for these individuals. The aim of this study is to better understand the characteristics and support needs of adults with ID and pica. This study is comprised of a quantitative and qualitative component. QUANTITATIVE STUDY Objectives: To investigate the prevalence, risk factors, social and medical characteristics of pica. To determine how pica is managed in terms of hours of supervision, receipt of interventions, and psychotropic medication. Methods: Secondary data analysis was performed on two samples as part of cross-sectional study: 1008 persons with ID from Ontario's facilities and 420 community-dwelling adults with ID from southwestern Ontario. All persons had been assessed using the interRAI Intellectual Disability (interRAI ID)?a comprehensive and standardized instrument that measures a variety of domains for support planning. Bivariate and multivariate analyses were restricted to the facility sample due to the small size of persons with pica in the community. Results:The overall prevalence of pica was 22. 0% and 3. 3% in the facilities and the community, respectively. Logistic regression analysis showed that being male, cognitive functioning, autism, and being non-verbal were associated with a higher odds of having pica, whereas activities of daily living (ADL) was a protective factor. A quadratic relationship was observed between cognitive function and pica: the risk of pica increased with severity of cognitive impairment up to moderate to severe levels of impairment and then diminished among those with very severe cognitive impairment. Behaviour management, self-care skills, and 8 hours or more of one-to-one supervision were more likely to be provided to persons with pica. Compared to persons without pica, persons with pica had higher rates of being prescribed antipsychotic medication. Surprisingly, pica was not associated with higher rates of gastrointestinal health problems, with the exception of acid reflux. The negative social outcomes of pica, however, were many: pica was associated with higher odds of not having a strong and supportive relationship with family, lack of contact with family or other close relations, and absence of participation in social and recreational activities.
QUALITATIVE STUDY Objective: To determine the support needs of adults with ID and pica from the perspective of direct-care staff of facility and community settings. Methods: Through two focus groups, the perspectives of four staff from Huronia Regional Centre (HRC), and six staff from community agencies from southwestern Ontario were examined. Transcripts were analyzed thematically for factors that facilitated or hindered the management of pica. Results: Qualitative data revealed three categories that underpinned reduction in pica: preventative measures (environmental controls, close supervision, and the provision of alternative activities), formal supports, and familiarity with the individual. On the other hand, inadequate staff support, lower functioning level of the individual, and lack of knowledge acted as barriers to managing and reducing pica. These barriers were associated with persons participating in fewer recreational activities and community outings, and in some cases the use of mechanical restraints. Barriers specific to each setting in the management of pica were also illuminated. Staff in both settings tended to be self-sufficient and isolated in managing this complex behaviour. Conclusions: Results suggest that attention should be equally paid to the potential social consequences of pica rather than solely to its health risks. Higher staff to client ratios, and training and education for staff to provide more active support to promote individuals' engagement in recreational activity and community integration is needed. Key recommendations also focus on educating and training staff on the risk factors and appropriate management of pica. Improving the collaboration and knowledge exchange among developmental service agencies is also recommended to enhance the management of pica among caregivers. Lastly, the community at large needs education on pica to foster more inclusive community living for those with ID.
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Riley, Jude E. L. "'Idiot-brained South' : intellectual disability and eugenics in Southern modernism." Thesis, Northumbria University, 2015. http://nrl.northumbria.ac.uk/27322/.
Full textAbstract:
This thesis examines the construction and functions of intellectual disability in the modernist literature of the American South from 1925-1940. The period saw a remarkable proliferation of intellectually disabled figures in various guises. These include William Faulkner's Benjy in The Sound and the Fury which has become one of the most analysed 'idiots' in all literature. However, the wider trend of which he is a part has largely lacked critical attention. Furthermore, the connections between this regional literary trend and the prominence of the eugenic movement in the era have been unexplored. This thesis questions why intellectual disability was so important to Southern writers in particular, and why it appears so frequently in their works. The thesis also examines the extent to which Southern writers incorporated eugenic ideas into their representations and how authors reinforced or challenged contemporary ideas regarding intellectual disability. The thesis offers detailed close readings from a selection of southern writers’ works contextualised with primary and secondary historical source material to adequately trace the period’s social, scientific and aesthetic models of intelligence and intellectual disability. The thesis argues that intellectual disability and eugenics were integral to the ways in which southern writers represented their region, not only in negotating regional and national anxiety regarding southern intelligence, but also acting as a crucial vehicle through which these authors examined the South's uneasy and peripheral relationship with modernity. The thesis adds to a growing understanding of the cultural significance of intellectual disability and the eugenic movement and shows how southern modernists' depictions of intellectual disability were linked to and can illuminate understandings of regional and national debates in the period about intelligence, inheritance, disability, family, community, and modernity.
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Quibell, Ruth Grace, and rquibell@swin edu au. "Unmaking the other? : discourses in intellectual disability in contemporary society." Swinburne University of Technology. Department of Sociology, 2005. http://adt.lib.swin.edu.au./public/adt-VSWT20050830.133554.
Full textAbstract:
Unmaking the Other? is a qualitative sociological analysis of the discourses of intellectual
disability present in contemporary Australian society. It attempts to reveal the ways that people with intellectual disabilities 'are' for Australians. This is important because people with
intellectual disabilities have a long history of being seen as 'other' or 'not one of us'. For many
years they were kept 'out of sight, and out of mind� on the margins of our communities, locked
in institutions or hidden in sheltered workshops. Yet, during the last few decades there has been
a concerted effort to bring people with intellectual disabilities back into society. Institutions and sheltered workshops closed, and policies of inclusion, normalisation and community living were vigorously pursued. People with intellectual disabilities are now equal citizens in the eyes of the law.
But how readily have we accepted that people with intellectual disability are 'one of us'? Have
community living reforms overturned deep cultural dispositions that cast people with intellectual disabilities as 'lesser', 'defective', and lacking personhood? This thesis investigates recent community living reforms, especially the assumption that inclusion and education would
radically transform our conceptualisations of people with intellectual disabilities. To do this, it draws on contemporary social and political theory to explore how the meanings of disability are created and maintained, focusing on the Foucauldian concept of discourse. This Foucauldian
theorisation of discourse, power and knowledge informs a methodology devised to provide a
more detailed and sophisticated analysis of the meanings of intellectual disability than previous
investigations. Texts from three key social arenas are analysed for the way in which our society
constructs intellectual disability, and these analyses lead to a number of theoretical and practical conclusions.
Specifically, the main contributions of this thesis are: the identification and analysis of fourteen distinct discourses of intellectual disability, the theoretical explication of their relations to one another, and theoretical discussion of what their presence reveals about intellectual disability in today�s Australia. The findings of a variety of discursive constructions of intellectual disability suggest a complex picture in which discourses of inclusion and membership have emerged that are consistent with community living reforms, while at the same time there has been a continuation of discourses that view people with intellectual disabilities as defective humans.
Drawing on theory and empirical evidence, possibilities are suggested for further political and educational interventions into the discursive construction of people with intellectual disabilities.
The problems posed by our attempts at liberation through community living reforms are major;
this thesis contributes to this task by revealing the complexity, contradictions, and resistances
inherent in this task. What is more, it sees these findings not as causes for dismay, but as reasons for cautious hope.
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Wentzel, Christian. "Molecular and Clinical Characterization of Syndromes Associated With Intellectual Disability." Doctoral thesis, Uppsala universitet, Medicinsk genetik, 2013. http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-197011.
Full textAbstract:
Intellectual disability (ID) affects approximately 1-3% of the population and is defined as having an IQ below 70 as well as a significant limitation in adaptive behavior. The implementation of chromosomal microarrays (CMA) into the field of clinical genetics has revolutionized the ability to find genetic aberrations responsible for different genetic disorders. Importantly. these technologies have allowed several new microdeletion and microduplication aberrations to be identified that otherwise would have escaped detection using more conventional methods. Finding the genetic etiology of a syndrome and its association to the phenotype is paramount to better health care, provision of tailored therapy, presymptomatic screening, accurate prognosis, recurrence risk evaluation and in some cases prenatal testing. Despite the plethora of new information available, there are still a number of clinical and genetic features we do not fully understand. The aim of this work was to identify regions and syndromes associated with ID by CMA analysis and to make a detailed clinical description of the affected patients’ phenotype. In paper I we studied the 22q11.2 duplication syndrome and presented two familial cases with a description of both their genotype and phenotype. Additionally, 36 cases harboring the duplication were reviewed to further delineate the phenotype of the syndrome. In paper II, we revealed two unrelated patients with a deletion at 6q14.1-q15 and a distinct phenotype. Together with one previously reported patient our study suggests that a novel, clinically recognizable microdeletion syndrome exists in these patients. In paper III the phenotype and genotype of six unrelated patients with partially overlapping microdeletions at 10p12.31-p11.21 were described. Taken together with a previously reported patient we propose that these findings represent a new contiguous gene syndrome. In paper IV, two sisters; one presenting with two tandem interstitial duplications and the other a large deletion over the same region (6q13-q16) were reported. The reason for the CNVs was a maternal de novo translocation. This is the first case describing the genotype and phenotype of this duplicated region at 6q13-q16. In conclusion, four different genetic aberrations involved in the etiology of ID and their corresponding phenotypes and candidate genes have been characterized.