Aims: Parents of children with intellectual and developmental disabilities tend to illustrate and report higher levels of stress and lower wellbeing than parents of typically developing children. This thesis aimed to explore the aspects of this relationship between parental wellbeing and raising a child with heterogeneous intellectual and developmental disability. Firstly, the thesis aimed to review the current literature and evidence base for mindfulness-based group and individual interventions and their effect on psychological outcomes for parents of children with intellectual and developmental disabilities. Secondly, a research study aimed to explore the role of overall parental locus of control and particular sub-domains of locus of control on parent reported wellbeing. Furthermore, the role of child compliant and social behaviour, child problem behaviour, diagnostic groups, level of functioning, and demographic variables were explored. Method: A systematic review of the literature was conducted to address the first aim of this thesis. Within the research study, a single sample of parents and family carers (n = 114) completed an online anonymous survey consisting of demographic information and three self-report measures; a modified version of the Parental Locus of Control Scale, the Warwick-Edinburgh Mental Wellbeing Scale, and the Nisonger Child Behaviour Rating Form. Results: The systematic review illustrated that mindfulness-based interventions appear to have a significant effect on a number of parent psychological outcomes; such as wellbeing, stress, mental health, compassion, and mindfulness. A further four papers indicated a significant impact on child behavioural outcomes from parental mindfulness interventions. The research study indicated parental locus of control, in particular the two sub-domains of child control, and parent efficacy significantly mediated the relationship between child problem behaviour and parental wellbeing. Conclusions: There is a need to further explore the effectiveness of mindfulness interventions on parental distress and child behaviour, in particular in comparison to well-established interventions and groups. The research study results highlight the importance of parental attributions in influencing the wellbeing of parents of children with intellectual and developmental disabilities. However, it is clear from these findings that there is a complex relationship between parent cognitive attributions and broader social and societal factors. These findings may inform future practice with these families, although further research to explore these complex relationships is required.

Comprehensive improvements in medical care, technology and residential settings have resulted in persons with developmental disabilities (DD) advancing to older age and outliving parental caregivers (Heller & Arnold, 2010). Typical siblings are expected to become the primary caregiver to their sibling with DD when parents become ill or die and unable to provide care (Burke, Fish, & Lawton, 2015; Heller & Arnold, 2010). This dissertation looks at the wellbeing and family functioning of siblings who become the co-residential caregiver following the transition of a brother or sister with DD from parental to sibling co-residential care. The family systems framework was the theoretical lens for understanding caregiver wellbeing and overall family functioning. Hermeneutic-narrative inquiry was the approach for interviewing and exploring the stories of 10 sibling caregivers of a brother or sister with DD following their transition from parental to sibling co-residential care. Two analytical approaches were used. Firstly, structural analysis involved a within-case analysis of individual participants’ stories of transition to determine the meaning ascribed to and identified with the caregiving experience. Secondly, thematic narrative analysis included an across-case analysis to identify themes related to caregiver wellbeing, family functioning, reciprocity of mutual support, and anticipating the caregiver role versus actual experience. Findings from the structural analysis showed that the meaning of the caregiving experience included a duty, obligation, responsibility and commitment to the family. Results from the thematic narrative analysis showed overall lower social and emotional wellbeing among participants, reduced functionality among family members with respect to lower emotional and social functioning, reduced engagement in recreation/leisure activities, as well as lower economic functionality for sibling caregivers with no spouse or children. Sibling caregivers reported higher overall wellbeing and family functioning due to availability of formal supports (e.g., respite care, day program services), and informal support, such as having support from a spouse, child, or extended family member. Findings regarding reciprocity showed increased instrumental support among sibling caregivers and reduced emotional support. When anticipating the role, caregivers described knowing they would assume the role but were unclear of the shift to assuming a parental rather than sibling role. Other unanticipated discoveries included feeling captive to the role and feelings of helplessness. Caregivers’ actual experiences involved learning to manage new challenges, society’s patronizing view of persons with DD, and an overall sense of pride in caregiving for giving back to their sibling with DD. Grief and future planning were also discussed, including the effect of grief on the sibling caregiver, sibling caregiver’s children and sibling with DD. Future planning looked at the aspects of planning and not having planned for the future of the sibling with DD. The study concludes with implications for current and future social work practice and research, as well as the study’s strengths and limitations.

SILVA, Camila Barreto. Aprendizagem cooperativa no contexto da sala de aula: a análise da evolução psicogenética da língua escrita de aluno com deficiência intelectual. 2016. 339f. - Tese (Doutorado) - Universidade Federal do Ceará, Programa de Pós-graduação em Educação Brasileira, Fortaleza (CE), 2016. / Submitted by Gustavo Daher (gdaherufc@hotmail.com) on 2016-10-07T16:58:48Z No. of bitstreams: 1 2016_tese _cbsilva.pdf: 2650088 bytes, checksum: 800f5bf6200b0c284e86f222db144052 (MD5) / Approved for entry into archive by Márcia Araújo (marcia_m_bezerra@yahoo.com.br) on 2016-10-11T12:54:44Z (GMT) No. of bitstreams: 1 2016_tese _cbsilva.pdf: 2650088 bytes, checksum: 800f5bf6200b0c284e86f222db144052 (MD5) / Made available in DSpace on 2016-10-11T12:54:45Z (GMT). No. of bitstreams: 1 2016_tese _cbsilva.pdf: 2650088 bytes, checksum: 800f5bf6200b0c284e86f222db144052 (MD5) Previous issue date: 2016 / This thesis aimed to analyze the Cooperative Learning constitutes psychogenetic evolution factor of the written language of students with intellectual disabilities in the context of common classroom. Examined whether there were differences in the evolution of syllabic writing among students with intellectual disabilities who participated in the sessions of Cooperative Learning and those in the control group. Also investigated these subjects had proactive behavior during production sessions written in the context of cooperation in the common room. Our study had a qualitative approach, using as a theoretical and methodological basis of the structural organization of the Cooperative Learning supported by Johnson, Johnson (1991, 1997, 1999). The thesis is the theoretical foundation sociointeractionist assumptions of Vygotsky, especially as the importance of interaction and the concept of mediation for learning group students; studies on the written language of psychogenesis countersigned by Ferreiro and Teberosky; and conceptions of the cognitive functioning of people with intellectual disabilities. Participated in the study six subjects with intellectual disabilities, four composing the experimental group and two control groups. ubjects attended three public schools in Fortaleza, in the 2nd and 3rd years of elementary school, and the Educational Service Specialist. The development of the research included nine procedures, including the application of pre-tests and writing post-tests, and performing 35 text production group sessions with each subject of the experimental group, a total of 140 sessions. The data revealed that, in general, subjects in the experimental group developed social skills to deal with and overcome the adversities of social-affective nature existing throughout the sessions and to position themselves in groups as the protagonist of his writing. The results showed that the subjects who participated in the sessions in groups showed behaviors of cooperative learning proposed the meeting, promoting, above all, the emergence of proactive attitudes during the construction of the collective texts, so that these subjects reflect on the system writing. Pre- and post-tests revealed changes of conceptual levels in the written language of the four subjects in the experimental group, and conceptual regressions in writing levels of the subjects in the control group. The data indicate that the cooperative learning constituted a structural approach applicable in the common room with intellectual disabilities with subjects in order to promote the development of psychogenic four study participants. The experience provided an opportunity also to subjects moments of reflection group on the writing system, making inferences and seeking autonomously solutions to your doubts and questions, an aspect that certainly contributes to the evolution of these subjects. / A presente tese teve por objetivo analisar se a Aprendizagem Cooperativa constitui-se fator de evolução psicogenética da língua escrita de alunos com deficiência intelectual em contexto de sala de aula comum. Analisou se existiam diferenças na evolução da escrita silábica entre os alunos com deficiência intelectual que participaram das sessões de Aprendizagem Cooperativa e aqueles do grupo controle. Investigou também se esses sujeitos apresentaram comportamentos pró-ativos durante as sessões de produção escrita em contexto de cooperação em sala comum. Nosso estudo teve uma abordagem qualitativa, utilizando como base teórica-metodológica a organização estrutural da Aprendizagem Cooperativa fundamentada por Johnson, Johnson (1991, 1997, 1999). A tese tem como fundamentação teórica os pressupostos sóciointeracionista de Vygotsky, principalmente quanto a importância da interação e do conceito de mediação para a aprendizagem dos alunos em grupo; os estudos sobre a psicogênese da língua escrita referendados por Ferreiro e Teberosky; e as concepções acerca do funcionamento cognitivo das pessoas com deficiência intelectual. Participaram do estudo seis sujeitos com deficiência intelectual, quatro constituindo o grupo experimental e dois o grupo controle. Os sujeitos frequentavam três escolas municipais de Fortaleza, nos 2º e 3º anos do Ensino Fundamental I, e o Atendimento Educacional Especializado. O desenvolvimento da pesquisa contou com nove procedimentos, dentre eles a aplicação de pré-testes e pós-testes de escrita, e a realização de 35 sessões de produção de texto em grupo com cada sujeito do grupo experimental, perfazendo um total de 140 sessões. Os dados revelaram que, de modo geral, os sujeitos do grupo experimental desenvolveram habilidades sociais para tratar e superar as adversidades de natureza socioafetivas existentes ao longo das sessões, bem como para posicionarem-se nos grupos como protagonista de sua escrita. Os resultados mostraram que os sujeitos que participaram das sessões em grupos apresentaram comportamentos ao encontro da proposta da Aprendizagem cooperativa, promovendo, sobretudo, a emergência de atitudes pró-ativas durante a construção dos textos coletivos, de modo que estes sujeitos refletissem sobre o sistema de escrita. Os pré e pós-testes revelaram mudanças de níveis conceituais na língua escrita dos quatro sujeitos do grupo experimental, e regressões conceituais nos níveis de escrita dos sujeitos do grupo controle. Os dados indicam que a Aprendizagem cooperativa constituiu-se uma abordagem estrutural aplicável em sala comum junto aos sujeitos com deficiência intelectual de modo a promover a evolução psicogenética dos quatro participantes do estudo. A experiência oportunizou também aos sujeitos momentos de reflexão em grupo acerca do sistema de escrita, fazendo inferências e buscando de forma autônoma soluções para suas duvidas e questionamentos, aspecto que certamente contribui para a evolução desses sujeitos.

Este estudo teve como objetivo a análise de um curso de capacitação profissional para alunos com deficiência intelectual numa escola especial. Os objetivos específicos foram: a) analisar o desenvolvimento social e o desempenho dos alunos nas atividades do curso; b) investigar as expectativas dos alunos e seus familiares em relação ao papel da escola especial no contexto da capacitação profissional; c) compartilhar o conhecimento produzido na escola especial e na universidade sobre alternativas pedagógicas para o ensino de alunos com deficiência intelectual. Para atender aos objetivos foi realizado um estudo de caso por meio da metodologia da pesquisa-ação, a qual consistiu de um trabalho colaborativo entre a pesquisadora e a professora da turma. Entre os procedimentos incluem-se observações das atividades do curso; entrevistas com a professora, funcionário da escola, alunos do curso e seus familiares. A análise dos dados destacou como aspectos relevantes: o desenvolvimento de uma proposta diferenciada de formação profissional para este alunado, a investimento pessoal da professora em uma capacitação para aprender a ensinar em um novo contexto, e a inciativa da escola de buscar parcerias para implementação de mudanças no seu escopo de atuação enquanto instituição especializada. A escuta dos alunos, seus familiares e uma profissional da escola colaborou para a proposição de novas ações dentro do contexto investigado. Nos dados obtidos também se evidenciou que as atividades de aula planejadas pela professora do curso foram determinantes para o bom desempenho dos alunos, sobretudo por serem realizadas no contexto real onde tais ações se executam. O trabalho colaborativo da pesquisadora e da professora viabilizando a elaboração de um plano individual de acompanhamento para os alunos no treinamento pode ser apontado como uma alternativa para o planejamento do processo de transição para a vida pós-escola. Entre outros aspectos, as entrevistas com os responsáveis indicaram a necessidade de um trabalho mais pontual da equipe da escola com as famílias sobre a perspectiva de vida pós-escolar dos alunos. De forma mais geral, o estudo de caso demonstrou que a escola especial, tem procurado encontrar caminhos para sua ressignificação por meio da aproximação e parceria com a universidade. Os dados obtidos permitem concluir que a formação continuada dos professores para atuar na capacitação profissional de alunos com deficiência intelectual é um processo que necessita do trabalho colaborativo de diferentes atores, conforme apontado pela própria professora do curso analisado. / Among other aspects, the interviews with the families showed the need of a more specific work by the school team with the families about the perspective of life after graduation for the students. In general, the case study demonstrated that the special school has been looking for ways of its re-signification by means of approach and partnership with the university. The data obtained allow to concluded that continuous formation of teachers to act in professional capacitation of students with intellectual disabilities is a process that demands the collaborative work of different actors, as pointed out by the teacher of the analyzed course. The interviews with the students, their families and school staff help the proposal of new actions within the investigated context. The data collect also showed that the classs activities planned by the teacher were determinant for the good progress of the students, specially because they were developed in the real context where those actions are executed. The collaborative work between the researcher and the teacher, allowing for the elaboration of an individual follow up plan for the students in training can also be pointed as an alternative for the planning of the transition process of life after graduation. In order to respond to the proposed objectives it was undertaken a case study by means of the action-research methodology, that consisted of a collaborative work between the researcher and the teacher. The procedures included observations of the course activities; interview with the teacher, school staff, students and their families. The data analysis showed as relevant aspects: the development of a differentiated project of professional formation for this type of student, the teachers personal investment in a capacitation in order to learn how to teach in a new context, and the schools initiative in searching for partnerships for implementation of changes in the scope of its programs as a specialized school. The main objective of this study was the analysis of a professional capacitation course for students with intellectual disabilities in a special school. The specific objectives were: a) to analyze the social development and the students outcome in the courses activities; b) to investigate the students and their families expectations in relation with the special schools role in the context of professional capacitation; c) to share the knowledge produced in the special school and the university in regard to pedagogical alternatives for teaching of students with intellectual disabilities.

Este estudo teve como objetivo a análise de um curso de capacitação profissional para alunos com deficiência intelectual numa escola especial. Os objetivos específicos foram: a) analisar o desenvolvimento social e o desempenho dos alunos nas atividades do curso; b) investigar as expectativas dos alunos e seus familiares em relação ao papel da escola especial no contexto da capacitação profissional; c) compartilhar o conhecimento produzido na escola especial e na universidade sobre alternativas pedagógicas para o ensino de alunos com deficiência intelectual. Para atender aos objetivos foi realizado um estudo de caso por meio da metodologia da pesquisa-ação, a qual consistiu de um trabalho colaborativo entre a pesquisadora e a professora da turma. Entre os procedimentos incluem-se observações das atividades do curso; entrevistas com a professora, funcionário da escola, alunos do curso e seus familiares. A análise dos dados destacou como aspectos relevantes: o desenvolvimento de uma proposta diferenciada de formação profissional para este alunado, a investimento pessoal da professora em uma capacitação para aprender a ensinar em um novo contexto, e a inciativa da escola de buscar parcerias para implementação de mudanças no seu escopo de atuação enquanto instituição especializada. A escuta dos alunos, seus familiares e uma profissional da escola colaborou para a proposição de novas ações dentro do contexto investigado. Nos dados obtidos também se evidenciou que as atividades de aula planejadas pela professora do curso foram determinantes para o bom desempenho dos alunos, sobretudo por serem realizadas no contexto real onde tais ações se executam. O trabalho colaborativo da pesquisadora e da professora viabilizando a elaboração de um plano individual de acompanhamento para os alunos no treinamento pode ser apontado como uma alternativa para o planejamento do processo de transição para a vida pós-escola. Entre outros aspectos, as entrevistas com os responsáveis indicaram a necessidade de um trabalho mais pontual da equipe da escola com as famílias sobre a perspectiva de vida pós-escolar dos alunos. De forma mais geral, o estudo de caso demonstrou que a escola especial, tem procurado encontrar caminhos para sua ressignificação por meio da aproximação e parceria com a universidade. Os dados obtidos permitem concluir que a formação continuada dos professores para atuar na capacitação profissional de alunos com deficiência intelectual é um processo que necessita do trabalho colaborativo de diferentes atores, conforme apontado pela própria professora do curso analisado. / Among other aspects, the interviews with the families showed the need of a more specific work by the school team with the families about the perspective of life after graduation for the students. In general, the case study demonstrated that the special school has been looking for ways of its re-signification by means of approach and partnership with the university. The data obtained allow to concluded that continuous formation of teachers to act in professional capacitation of students with intellectual disabilities is a process that demands the collaborative work of different actors, as pointed out by the teacher of the analyzed course. The interviews with the students, their families and school staff help the proposal of new actions within the investigated context. The data collect also showed that the classs activities planned by the teacher were determinant for the good progress of the students, specially because they were developed in the real context where those actions are executed. The collaborative work between the researcher and the teacher, allowing for the elaboration of an individual follow up plan for the students in training can also be pointed as an alternative for the planning of the transition process of life after graduation. In order to respond to the proposed objectives it was undertaken a case study by means of the action-research methodology, that consisted of a collaborative work between the researcher and the teacher. The procedures included observations of the course activities; interview with the teacher, school staff, students and their families. The data analysis showed as relevant aspects: the development of a differentiated project of professional formation for this type of student, the teachers personal investment in a capacitation in order to learn how to teach in a new context, and the schools initiative in searching for partnerships for implementation of changes in the scope of its programs as a specialized school. The main objective of this study was the analysis of a professional capacitation course for students with intellectual disabilities in a special school. The specific objectives were: a) to analyze the social development and the students outcome in the courses activities; b) to investigate the students and their families expectations in relation with the special schools role in the context of professional capacitation; c) to share the knowledge produced in the special school and the university in regard to pedagogical alternatives for teaching of students with intellectual disabilities.

A qualidade de vida de pessoas com deficiência mental vem sendo investigada, nos últimos anos, sob a perspectiva de seus cuidadores que, na maioria das vezes, são os próprios pais. Em pesquisas e, mesmo socialmente, não é prática comum dar voz a pessoas com deficiência. Sabe-se que elas são capazes de pensar sobre seus sentimentos e de expressá-los; são capazes de trabalhar e, independentes, morar em sua própria casa, constituindo uma família. Assim, este estudo teve por objetivos: conhecer a opinião de adultos com deficiência mental leve em relação a sua qualidade de vida e a opinião dos cuidadores a esse mesmo respeito; avaliar a sobrecarga gerada na vida destes cuidadores, pelo cuidar das pessoas com deficiência. Participaram desta pesquisa 15 adultos (20 anos ou mais) com deficiência mental leve, e seus respectivos cuidadores. As pessoas com deficiência responderam a um instrumento que avalia a qualidade de vida (WHOQOL-Bref) e a uma entrevista estruturada. Os cuidadores responderam, além destes dois instrumentos, a uma escala que avalia a sobrecarga ao cuidar, a Burden Interview. Os dados provenientes das escalas de qualidade de vida e de sobrecarga foram analisados estatisticamente, conforme indicação da literatura, enquanto aqueles resultantes das entrevistas foram analisados quantitativamente e também a partir do Sistema Quantitativo-Interpretativo. Após a análise dos dados em separado, os resultados foram comparados entre si. Para ilustrar alguns detalhes de participantes que se destacaram no grupo, realizaram-se dois estudos de caso, sendo cada um com uma pessoa com deficiência mental e seu respectivo cuidador. Comparando-se os resultados obtidos a partir de todas as avaliações realizadas, obteve-se que, de maneira geral, as pessoas com deficiência apresentam-se mais satisfeitas e seus cuidadores mais insatisfeitos cada um com sua própria qualidade de vida. As pessoas com deficiência que possuem idade superior a 27 anos mostraram-se mais insatisfeitas com o domínio das relações sociais. No caso dos cuidadores, ao avaliarem a própria qualidade de vida, os índices de insatisfação com o próprio bem-estar físico estão associados à idade elevada e também ao elevado número de anos em que exerce a função de cuidar. Isto se verifica principalmente entre os cuidadores de alta renda, porém, entre aqueles de baixa renda familiar, existe uma grande satisfação com o seu bem-estar físico e com suas relações sociais. Em geral, os cuidadores não demonstraram alta sobrecarga advinda da rotina de cuidados. Ao tratarem, através das entrevistas, de assuntos relacionados com a independência, sociabilidade e sexualidade, os relatos das pessoas com deficiência e de seus cuidadores se tornam um pouco distintos, demonstrando alguns conflitos, principalmente no que diz respeito ao último tópico. Conclui-se, por fim, que as pessoas com deficiência mental são capazes de falar de suas próprias vidas e apresentam uma visão positiva das mesmas, expressando seus sentimentos e pensamentos a respeito da realidade em que vivem, de maneira bastante concreta. E ainda, seus cuidadores não se sentem sobrecarregados como os de outras populações, mas possuem dúvidas e receios que podem ser amenizados com a ajuda de profissionais da Psicologia. / The quality of life of people with intellectual disability has been investigated lately, under the view of caregivers who are their own parents most of times. That is why people with intellectual disability are often socially neglected. It is known those people are able to think about their feelings and express them; are able to work and to live in their own home independently, and to create a family. Thus, the present study aimed: to known the opinion of patients with mild intellectual disability related to their quality of life; the opinion of their caregivers about people with disability quality of life; to evaluate the burdens of taking care of people with intellectual disability. Fifteen people with mild intellectual disability participated to the study, adults (over 20 years-old) and their respective caregivers. People with disability answered to an instrument that evaluates quality of life (WHOQOL-Bref) and to an interview. Caregivers, besides answering both instruments, were submitted to a scale that evaluates the burdens of care, a Burden Interview. Data from quality of life and burden scales were statistically analyzed, while data from interviews were quantitatively analyzed and so did by Quantitative-Interpretative System. After data analysis, outcomes were compared. In order to recover some details, two cases reports with intellectual disability and their caregivers were carried out. Comparing outcomes obtained from evaluations of quality of life of people with intellectual disability and their caregivers, those people with disability are generally more satisfied with their own quality of life and those caregivers are less satisfied with the quality of life of whom they take care. People with disability over 27 years-old were more unsatisfied with socializing. Caregivers, as evaluating their own quality of life, dissatisfaction with their own physical welfare are associated to elderly and also to spending years of caretaking, mainly among those better paid. However, among those worse paid there is a high satisfaction with their physical welfare and socializing. Caregivers generally dont feel very burdened on taking care. Issues such as independence, sociability and sexuality, report from people with disability and their caregivers were quite different, showing some conflicts, principally the latter one. In conclusion, people with intellectual disability are able to talk about their own lives and present a optimistic view, expressing their feelings and thoughts about reality they live in a very concrete way. Moreover, their caregivers do not feel overburdened, but actually they have some doubts and fears that might be diminished with aid of psychologists.

In order to process information, neurons must connect together to form a neuronal circuit. The formation of neuronal circuits is dependent on synaptic activity through glutamate receptors and downstream molecules within the post-synaptic density (PSD). The pathways downstream of glutamate receptors play an important role in maintaining appropriate synapses and forming neural circuits; mutations in genes that encode PSD proteins disrupt these pathways and are associated with many forms of intellectual disability in humans (Grant 2012). The development of neuronal circuits relies on two key developmental events; neurons must first send out axons locally and to disparate brain regions and then, neurons must form connections with the dendrites of target neurons. The rodent trigeminal system is a neuronal circuit that processes somatosensory information from whiskers on the facepad via nuclei in the brainstem to the thalamus and ultimately the cerebral cortex. Brain regions that comprise the trigeminal system are organised in a manner that topographically recapitulates the whisker pattern; each whisker on the rodent facepad corresponds to a physiological and anatomical unit in the primary somatosensensory cortex (S1) called a barrel. This topographical organisation creates a pattern consisting of thalamocortical axons (TCA) clustered into distinct whisker-related bundles and layer IV spiny stellate cells which segregate around the outside of TCA bundles. Three different anatomical patterns can be identified within the mouse S1 by labelling the cell soma, axons or the extracellular matrix. This strict organisation makes the rodent S1 an excellent model for discerning the proteins involved in neural circuit formation, and by screening genetic mutants for S1 patterning defects the molecular pathway involved in setting up neuronal circuits can be elucidated. Furthermore an understanding of these pathways may provide insight into how neuronal networks are disrupted in human intellectual disability. In the first data chapter, the expression profile of three neurofilament subunits were characterised in order to develop a method of identifying anatomical defects in barrel morphology. The precise organisation of the rodent S1 can also be used as a method to identify the cellular localisation of neurofilament subunits ex vivo. Neurofilaments are polymers formed from three subunits identified by their relative molecular weight. By using the unique patterning of S1, each neurofilament subunit shows a unique spatialtemporal expression pattern in the somatosensory cortex. Two neurofilaments subunits; the medium and the heavy neurofilament subunits can be used to identify TCA which can be used as an indicator of anatomical defects in barrel patterning. In chapter 4 neurofilament labelling was used in conjunction with other histological techniques to investigate S1 organisation in mice lacking synapse associated protein 102 (SAP102). SAP102 is a PSD scaffolding molecule that binds to both NMDA receptor subunits and SynGAP, a synaptic GTPase activating protein, furthermore it is associated with X-linked mental retardation in humans (Tarpey et al., 2004; Zanni et al., 2010). Mutant mice lacking functional NMDA receptors or PSD proteins such as SynGAP show defects in S1 pattern formation (Barnett et al., 2006; Iwasato et al., 2000; Wijetunge, Till, Gillingwater, Ingham, & Kind, 2008). SAP102 null mutants (SAP102-/y) have defects in synaptic plasticity and are slow to learn on behavioural tasks (Cuthbert et al., 2007), however it is unclear how the loss of SAP102 may disrupt neural networks. SAP102-/y were found to have a reduction in brain mass compared to wild-type littermates, but cortical thickness and patterning of S1 is unchanged. SAP102-/y have fewer TCA reaching the cortex compared to littermates; furthermore SAP102-/y mutants have layer specific defects in the density of dendritic spines. These data suggest that in the absence of SAP102 connectivity in the S1 is altered by layer specific changes in synapses number and fewer axons innervating cortical layer IV. In the final experimental chapter (chapter 5) the combined role of SAP102 and Postsynaptic density protein 95 (PSD95) in S1 patterning was investigated. SAP102 and PSD95 are the main members of the membrane-associated guanylate kinase (MAGUK) family expressed during early cortical development. These proteins share a similar protein structure, perform similar functions at the synapse (Elias & Nicoll, 2007) and have been shown to compensate for each other in vitro (Elias, Elias, Apostolides, Kriegstein, & Nicoll, 2008). Genetic mutants lacking both SAP102 and PSD95 are not viable and do not survive beyond birth (Cuthbert et al., 2007; Petrie, 2008). Therefore in order to investigate the combined role of these proteins a novel approach was developed that utilises X-inactivation to produce mosaic animals containing cells that lack both proteins. The distribution of cells containing the same X-chromosome was investigated and found to be evenly distributed throughout the cortex, demonstrating that this method could be used to investigate allosomal genes. In mosaic animals where approximately half the cells only lack PSD95 and the remaining cells lack both SAP102 and PSD95, double knockout cells are viable and are equally represented in S1. These double knockout cells contribute to normally barrel formation which suggests that SAP102 and PSD95 are not required for barrel formation.

This discourse deals with the establishment of a third facility for the Little Eden Society for the Care of Persons with Mental Handicap in Prinshof, Pretoria. The Little Eden Society cares for persons with profound intellectual disability who require intense care and stimulation. A description of intellectual disability and mental illness, as well as the history of the treatment and social attitudes towards people afflicted by them, has been undertaken. This is reviewed together with the evolution of the architecture of various facilities for the care and treatment of intellectually disabled and mentally ill people. A number of precedent studies were undertaken of contemporary architecture, relevant to various aspects of the new facility. Finally, the client’s existing facilities and needs were examined and understood in the context of the new facility. With these studies as grounding, the design of the new facility could be undertaken. The resulting design seeks to embody the Little Eden Society’s ethos of complete care, addressing the needs of the mind, body and soul; seeking to stimulate and develop each person to their own individual potential. / Dissertation (MArch (Prof))--University of Pretoria, 2008. / Architecture / unrestricted

The objective of this dissertation was to evaluate an integrated knowledge translation intervention in a community-based service agency providing services to adults with intellectual disabilities. The dissertation had two objectives: 1) to understand how stakeholders create knowledge, collaborate, and make decisions to implement knowledge on supporting sexuality, and 2) to examine the underlying processes of integrated knowledge translation and how these interplay in the context of community and intellectual disability research. First, we conducted a scoping review to identify strategies to support the sexuality of persons with intellectual disabilities. This knowledge was made available and discussed with stakeholders of the participating agency (i.e., persons with intellectual disabilities, front-line staff, caregivers, supervisors, and senior management) using various methods such as focus groups, an evidence brief and a stakeholder dialogue. Data collection included transcripts of discussions with stakeholders, facilitator notes, notes from the primary researcher, and two self-report questionnaires. The intervention resulted in two in-person workshops and an online program on sexual health for persons with intellectual disabilities and front-line staff. Second, we identified barriers and facilitators to conducting an integrated knowledge translation intervention in a community and disability setting. These included power dynamics and the accessibility of the integrated knowledge translation intervention to knowledge users. The findings from these two aims presented in this dissertation inform changes that may further increase the relevance and applicability of knowledge translation interventions in the community and disability setting.

Over time, intellectual disability has been mythologised into folklore, religion and culture resulting in patterns of thought, communication, actions, customs, beliefs and values related to intellectual disability specific to particular societies (Smith, 2002 in Edwardraj, Mumtaj, Prasad, Kuruvilla & Jacob, 2010:736). However, data on the perceptions related to intellectual disabilities in the general population, and specifically in the more rural areas are sparse. The individual with an intellectual disability may have a significant influence on his family members, as he or she may demand specific requirements and obligations of the family members, depending on the severity of the intellectual disability (Moyson & Roeyers, 2012:88). According to Mandleco, Frost Olsen, Dyches and Marshall (2003:365), relatively limited research has explored the relationship between the parents' and non-disabled siblings' functioning when living with an individual with an intellectual disability. The adolescent is in need of healthy support within the family system to help him during his unique process of change. Within families with intellectual disabilities, healthy functioning may be influenced or challenged (Graff, Neely-Barnes & Smith, 2008:240). However, according to Begum and Blacher (2011:1581) research indicates that there seems to be inconsistent findings on the manner in which individuals with intellectual disabilities have an impact on their non-disabled siblings. Therefore, it was the goal of this study to explore the experiences of adolescents living with a sibling with a moderate to severe intellectual disability. The family-systems theory could provide an appropriate theoretical framework to work from in order to explore the experiences of adolescents living with a sibling with a moderate to severe intellectual disability, seeing that the reciprocal influences of different sub-systems was explored. In order to achieve this goal a qualitative research approach was adopted. Applied research was considered the most suitable as the research findings emanating from this study could be used to propose recommendations regarding new problems or strengths identified and potential services that could be of benefit to families with children/siblings with moderate to severe intellectual disabilities. Only the identified non-disabled adolescents participated in this study. Research was conducted in the Carletonville area, Gauteng Province. The intrinsic case study was employed as the research design. The researcher recruited 10 (n=10) participants through two non-probability sampling techniques, namely purposive sampling, followed by snowball sampling. Semi-structured, one-on-one interviews were conducted to gather rich information from the participants. A pilot study was conducted in order to pre-test the interview schedule's effectiveness. Creswell's process for thematic data analysis was used to extrapolate themes and sub-themes. The trustworthiness of the data interpretation was confirmed through reflexivity, peer debriefing and an audit trail. The outcome of the empirical study revealed that the participants were unfamiliar with the term intellectual disability and that they demonstrated a limited ability to define intellectual disability as a phenomenon. As a result, they had a lack of knowledge regarding their siblings' functioning, as well as necessary current and future support needed. It seemed as if the lower the socio-economic background of the participant, the less likely he was to have basic knowledge and insight into his sibling's condition and the implications thereof. It was concluded that the general public seems to have a lack of knowledge regarding intellectual disability as a phenomenon, as participants were of the opinion that the public acted in a discriminative manner towards their siblings and persons with intellectual disabilities. The experiences of adolescents living with a sibling with a moderate to severe intellectual disability was explored in terms of their emotions; their relationships with their sibling and with their parents; as well as the influence of living with their sibling in their lives. Amongst other findings, participants experienced that their siblings received more attention or preferential treatment from their parents. As a result, emotions of sadness and anger were experienced. Participants were concerned about their siblings' care and support. They experienced anxiety, stress and guilt regarding their siblings in terms of care and support; therefore their schoolwork was influenced negatively. The siblings with an intellectual disability influenced the participants' lives positively as their understanding of individuals with intellectual disabilities was enhanced. Lastly, participants were in favour of support and educational groups, professional counselling, as well as guidance in terms of coping mechanisms to support them and their families. The guidelines proposed for practitioners working with families with an individual with moderate to severe intellectual disabilities are the following: Educate parents and family members involved regarding intellectual disability as phenomenon in order to eliminate misconceptions, unrealistic expectations and family conflict; enhance parents' awareness of existing support services in their surrounding communities; implement community awareness projects in cooperation with the existing centres for people with intellectual disabilities in order to empower the community with adequate knowledge regarding intellectual disability. In order to reduce stigma and discrimination associated with intellectual disability, considering the need for support services identified through this research; practitioners should ensure the rendering of therapeutic services, as well as support and educational groups. In rendering these services practitioners can play a role in reinforcing such families' wellbeing, socio-emotional functioning and interpersonal relationships. / Mini Dissertation (MSW)--University of Pretoria, 2016. / Social Work and Criminology / MSW / Unrestricted