This thesis explores the meaning of wellbeing for children with a disability in New Zealand, an area of social policy that has been largely unexamined. Focusing on the school environment, three questions are addressed: What does wellbeing mean for children with a disability? What factors influence it? Are current policy frameworks which address child wellbeing relevant to the wellbeing of children with a disability? The research involved qualitative data collection from nine purposively selected participants: children with a disability, their parents and key informants involved in service provision and policy development. A critical review of international and national literature on definitions of wellbeing and disability, and on existing data sources, is followed by a socio-demographic profile of children with a disability in New Zealand. Qualitative findings are interpreted in relation to current New Zealand social policy initiatives and frameworks - New Zealand's Agenda for Children, the Whole Child Approach and the Key Settings Model - as well as the theoretical perspectives of social solidarity, wellbeing, the ecological theory of human development and discourses of disability. Findings indicate that the concept of wellbeing as applied to all New Zealand children is also relevant to children with a disability. The difference however, lies in the factors which ultimately influence whether the various dimensions of wellbeing will actually be experienced by children with a disability. For these children, communication as a dimension of wellbeing for example, is influenced by language skill acquisition, which in turn depends upon allocation of appropriate and adequate resourcing of the child's learning environment. The conclusion drawn is that policy frameworks, principles and social indicators addressing child wellbeing, are inconsistently applied with regard to children with a disability. New Zealand's Agenda for Children which promotes an ecological approach to child wellbeing would benefit from further adaptation to reflect the needs of this specific child population. The notion of wellbeing for children with a disability needs further development for the purpose of knowledge building, and to ensure clearer articulation between processes of policy development, service provision, and resource allocation.

Despite major advances in our understanding of the biology of childhood acute myeloid leukemia (AML) and the development of new cytotoxic drugs, the prognosis of long-term survival is still only 60-65 %. In the present research, we studied the pharmacokinetics of drugs used in the induction therapy of childhood AML and performed in vitro drug sensitivity testing of leukemic cells from children with AML. The aims of the studies were to correlate the results of the analysis to biological and clinical parameters and to identify subgroups of AML with specific drug sensitivity profiles in order to better understand why treatment fails in some patients and how therapy may be improved. Blood samples were analysed to study the pharmacokinetics of doxorubicin (n=41), etoposide (n=45) and 6-thioguanine (n=50). Doxorubicin plasma concentration and total body clearance were correlated to the effect of induction therapy, and doxorubicin plasma concentration was an independent factor for complete remission, both in univariate and multivariate analysis including sex, age, and white blood cell count at diagnosis. For etoposide and 6-thioguanine no correlation was found between pharmacokinetics and clinical effect. Children with Down syndrome (DS) tended to reach higher blood concentrations of etoposide and thioguanine nucleotides, indicating that dose reduction may be reasonable to reach the same drug exposure as in children without DS. Leukemic cells from 201 children with newly diagnosed AML, 15 of whom had DS, were successfully analysed for in vitro drug sensitivity by the fluorometric microculture cytotoxicity assay (FMCA). We found that samples from children with DS were highly sensitive to most drugs used in AML treatment. In non-DS children, the t(9;11) samples were significantly more sensitive to cytarabine (p=0.03) and doxorubicin (p=0.035) than other samples. The findings might explain the very favorable outcome reported in children with DS and t(9;11)-positive AML. A specific drug resistance profile was found for several other genetic subgroups as well. A detailed study of MLL-rearranged leukemia showed that cellular drug sensitivity is correlated both to partner genes and cell lineage, findings that support the strategy of contemporary protocols to include high-dose cytarabine in the treatment of patients with MLL-rearrangement, both in AML and acute lymphoblastic leukemia (ALL). Our results indicate that drug resistance and pharmacokinetic studies may yield important information regarding drug response in different sub-groups of childhood AML, helping us to optimize future chemotherapy in childhood AML.

The purpose of this study is to examine how two educators at a preschool that is located in a neighborhood south of Stockholm works with TAKK with children who has Down syndrome in a language promotion purposes. The aim is also to investigate what teachers think about using TAKK with children without special needs and children with Down syndrome. In this study, I used qualitative research methods. I've used both observations and interviews to get answers to my questions. The theories which I have used in this thesis is, socio-cultural perspective, including integration and segregated integration. In order to find out how the educators work with TAKK I have asked these questions: How do the educators work with TAKK with children with Down syndrome from a language development perspective? What do the educators express about using TAKK with children without special needs and with children who has Down syndrome? My conclusions to these questions are that the literatures I have read in many ways are consistent with how they work. They told me, among other things, that the use of TAKK is good for both the children with and without Down syndrome. Regarding to how they use TAKK in their everyday work I could see that they used TAKK on a daily basis in the routines at the preschool.

Employment is viewed as one of the pinnacle factors in enhancing quality of life. Despite being a right in South Africa, the employment opportunities available to individuals with Down syndrome are limited. This study aimed to explore the employment experiences of individuals with Down syndrome, their employers and their families in KwaZulu-Natal. This research provided valuable information for Speech-Language Therapists on enhancing communication in the workplace as effective communication in the workplace is crucial for employment. A qualitative approach and phenomenological design were used within the context of International Classification Framework, biopsychosocial model and critical paradigm. Individual semi-structured interviews were conducted and thematic analysis was used to analyse the data. Results revealed that individuals with Down syndrome valued their employment for the emotional and financial support it provided and the skill development opportunities available. Gaps were evident in legislation specific to the employment of individuals with Down syndrome as well as the implementation of these limited policies. Communication is necessary in the workplace; however, it is one of the areas that is severely impacted in individuals with Down syndrome. Employers and family members’ experiences indicated variability in speech intelligibility, language and literacy skills among the participants with Down syndrome linked to cognitive ability, intervention, education received, mood swings and memory loss. Intriguing trends relating to the positive use of technological devices for social and recreational purposes were evident. Employment success can be linked to successful job selection, visual and emotional support. Speech-Language Therapists, employers, family members and the Down syndrome association were found to have crucial roles in providing this support. The role of the Speech-Language Therapist continues to evolve and is required across the lifespan for different purposes. / M.Sc. University of KwaZulu-Natal, Durban 2013

Bakgrunn: Levealderen for personer med Downs syndrom har økt dramatisk på 1900 tallet i hele den vestlige verden. Imidlertid er det få undersøkelser om levealderfor denne populasjonen på 2000-tallet, og vi har ikke funnet noen norske undersøkelser. Hensikt:Undersøkelsen skal gi innsikt i levealdersutvikling i Norge fra 1969 og frem til 2010 og fremtidig forekomst av voksne og eldre med Downs syndrom frem til 2050. Metode:Det er en kvantitativ nasjonal demografisk registerundersøkelse for å beregne levealdersutviklingen for personer med Downs syndrom (n = 2 593). Registerdataene som er samlet inn er kontinuerlige data som er basert på løpende tellinger i den nasjonale fødsels-og dødelighetsstatistikken. Innsamlede data er personer registrert med diagnosekode Downs syndrom, årfødt, år død, alder ved død og kjønn. Hovedresultat:Gjennomsnittlig alder ved død for personer med Downs syndrom fra 1969 til og med 2009 økte fra 16,57 år til 53,40 år. Det var ingen statistisk signifikant forskjell på alder ved død mellom menn og kvinner. Gjennomsnittlig alder ved død for alle som døde etter fylte 40 år i studieperioden økte fra 53,95 år til 58,35 år. Forventet andel personer med Downs syndrom som vil bli 40 år og eldre vil øke fra 52 % for de som blefødt i 1967 til 94 % for de som ble født i 2009. Konklusjon:Levealderen for personer med Downs syndrom har økt betydelig fra 60-tallet og detteskyldes i hovedsak nedgang i spedbarnsdødeligheten. For de som overlever barneårene viser undersøkelsen imidlertid nesten ingen økning i rest levealder i løpet av undersøkelsesperioden. Frem til 2050 kan vi forvente en fordobling av antallet som vil være over 40 år / Background: Life expectancy for people with Down syndrome increased dramatically in the Western worldduringthe 1900s. However, fewsurveys have investigated life expectancy for this population since 2000,none of themNorwegian. Aim: This study aimedt o provide insight into life expectancy for Norwegians with Down syndrome between 1969 and2 010, and to project future rates for adults with Down syndrome until 2050. Method: This quantitative national demographic registry study estimated the development of life expectancy for people with Down syndrome (n = 2,593). To calculate age at death, we collected data from death certificates reported to Statistics Norway.Together with data from Medical Birth Registry,we simulated life tables.Collected data included persons with the diagnosis code for Down syndrome, birth year, year of death, age at death,and sex. Main results:Between 1969 and 2010, mean age at death of persons with Down syndrome increased from 16.57 years to 53.40 years, respectively. We observed no statistically significant difference in age at death between men and women. Average age at death for persons who died after 40 years of age increased from 53.95 years to 58.35 years duringthe study period. We estimated that the percentage of people with Down syndrome older than 40 years of age will increase, from 52% to 94% for those born in 1967 and 2009, respectively. Conclusion:Life expectancy for people with Down syndrome has increased significantly since the 1960s, mainly due to a relative decrease in newborn and infant mortality. Importantly, such individuals who survive childhood showed almost no increase in remaining life expectancy during the study period. By 2050,we expect the number of people with Down syndrome aged 40 or more years to double / <p>ISBN 978-91-86739-73-0</p>

Thesis (PhD)--University of Stellenbosch, 2002. / Page ii of digitised copy missing due to the condition of the original hard copy. / ENGLISH ABSTRACT: no abstract available / AFRIKAANSE OPSOMMING: Hierdie studie bestudeer die rol wat die opvoedkundige sielkundige kan speel in die ondersteuning van leerders met Downsindroom tydens die insluiting tot hoofstroomonderwys. Die studie vind plaas in 'n tydperk waar postmoderne denke en demokratisering van onderwys in Suid-Afrika te voorskyn kom. Hierdie tipe studie is relevant. aangesien huidige beleidsdokumente klem Ie op die demokratisering van onderwys en die transformasie na inklusiewe onderwys. Die Universiteit van Pretoria het in samewerking met die Universiteit van Stellenbosch 'n lootsprojek geinisieer waarin inklusiewe onderwys bestudeer is. Die projek het bestaan uit 'n gevallestudie van tien leerders met Downsindroom wat gedurende 1996 in verskillende hoofstroom kleuterskole geplaas is, waartydens hulle 'n leergereedheidsprogram gevolg het. Gedurende 1997 is die leerders in graad eenklasse in die hoofstroom geplaas. Die leerders se agtergrond was divers ten aansien van hul onderrig, maar die meeste van hulle was eers in spesiale skole. Die doel van die studie was om die leerders, ouers en onderwysers te ondersteun en verdere ondersteuning in a trans-disslplinere span te koordineer. Die waarneming en temas wat in hierdie studie na yore gekom het, beklemtoon dat diagnose, evaluasie en terapeutiese ondersteuning binne 'n ekosistemiese raamwerk belangrik is vir leerders met Downsindroom wat in die hoofstroom geplaas word. Die konsep van holistiese gesondheidsontwikkeling word beklemtoon in die transformasie van onderwys in Suid-Afrika. Opvoedkundige sielkundiges moet hulself dus ook strategies posisioneer. Gedurende die studie is die volgende rolle vir die opvoedkundige sielkundige ge"identifiseer: psigoterapeut, assessor/evalueerder, fasiliteerder, navorser/reflektiewe praktisyn, vakspesialis, konsultant, bestuurder en administratiewe rol en laastens die rol van ontwikkelingsfasiliteerder. Dit is ook belangrik dat die opvoedkundige sielkundige die rol as fasiliteerder van geestesgesondheid vertolk.

Abstract The primary focus of this research project was an evaluation of the Group Stepping Stones Triple P parenting program for parents of a child with a disability. In addition there was an investigation into the similarities and differences in child behaviour and parenting experience, and program outcomes, for families of children with different developmental disabilities. While the Triple P Positive Parenting Program has an impressive evidence base (Sanders, 1999; Sanders, Markie-Dadds, Tully & Bor, 2000) and research indicates that the standard Stepping Stones Triple P Program is efficacious for different disability groups (Roberts, Mazzucchelli, Studman & Sanders, 2006) and for parents of children with Autistic Spectrum Disorders (Whittingham, Sofronoff, Sheffield & Sanders, 2009), to date the group version of Stepping Stones Triple P has not been comprehensively evaluated, nor the efficacy of the program evaluated when administered concurrently to parents of children with different developmental disabilities. Currently, there is a lack of participant-friendly, evidence-based group parenting programs that can be utilised in a cost-effective manner with all parents of children with disabilities. Many interventions have been designed specifically to cater to the requirements of a particular disability group. While there is some divergence in disability characteristics and in the experience of families of children with different disabilities, there is compelling evidence that many of the most challenging experiences faced by parents of disabled children (such as emotional and behavioural disturbance and delays in skill development) are shared by many disability populations (Raina et al., 2005; Bourke et al., 2008). Consequently there is empirical support for the implementation of a broad, skill-based parenting program for all parents of children with disabilities. The first study in this research project was a randomised controlled trial the Group Stepping Stones Triple P program for parents of children with Autism Spectrum Disorders (ASD), Down syndrome, other intellectual disabilities and Cerebral Palsy. Fifty-two families were included in this trial and were randomly allocated to treatment and wait-list control groups. The results demonstrate significant improvements in child behaviour and parenting difficulties that were maintained at follow-up six months later. For over a third of participants the change in child behaviour and parenting styles was clinically reliable (Jacobsen & Truax, 1991; Evans, Margison & Barkham, 1998). In addition, the majority of parents reported the attainment of their program goals following the intervention. The second study was a comparison of program outcomes for parents from different disability groups. The sample was divided into two groups; parents of children with ASD and parents of children with intellectual and physical disabilities. The results demonstrated significant improvements in child behaviour and parenting difficulties from pre- to post-intervention for both the ASD group and the Intellectual and Physical disability group. For a third of parents in the ASD group and over a third of parents in the Intellectual and Physical disability group, the changes were clinically reliable (Jacobsen & Truax, 1991; Evans et al., 1998). In addition, the means for both groups on the child behaviour, parenting style and parental psychological functioning variables were compared. The results indicated that there were some differences in child behaviour, parenting styles and parent distress between the two groups, and in the program goals set by parents. However, overall the results revealed no systematic differences in treatment outcomes across disability groups, demonstrating that the program was effective for families of children with ASD and families of children with Intellectual and Physical disabilities. Finally, a series of three case evaluations were conducted to examine program outcomes and differences in child behaviour and parenting experiences for the families of a child with ASD, Down syndrome and Cerebral palsy. The results of the case studies revealed significant improvements in child behaviour and parenting styles for all three families, along with high levels of program satisfaction and successful attainment of parenting goals. For all three families these changes in child behaviour and parenting style were clinically reliable (Jacobsen & Truax, 1991; Evans et al., 1998) and maintained at six-month follow up. The results also provided information about the similarities and differences in parenting experiences, child behaviour and program goals across the three disabilities. Overall, this research project has demonstrated that the Group Stepping Stones Triple P program is an effective parenting intervention for challenging behaviour and dysfunctional parenting in families of children with a range of developmental disabilities. The results of this research provide evidence to suggest that mixed disability group format used in the administration of the Group Stepping Stones Triple P program did not preclude positive program outcomes. Finally, the results of this research project indicate that there are many shared parenting experiencing across families of children with different disabilities and that regardless of observed differences in disability characteristics and family experiences, the Group Stepping Stones Triple P program is sufficiently flexible and comprehensive in its scope to meet the needs of families from different disability populations.

Thesis (MEdPsych)--University of Stellenbosch, 2007. / On t.p.: Master of Education in Educational Psychology. Bibliography. Also available via the Internet.

Made available in DSpace on 2014-06-11T19:23:35Z (GMT). No. of bitstreams: 0 Previous issue date: 2010-03-12Bitstream added on 2014-06-13T18:09:52Z : No. of bitstreams: 1 tanaka_mh_me_arafo.pdf: 647421 bytes, checksum: 7aca1036f8801f2b3143929ea57d6d5c (MD5) / A doença periodontal (DP) em indivíduos com Síndrome de Down (SD) se desenvolve com alta prevalência, precocemente, de modo rápido e generalizado em comparação com indivíduos não-sindrômicos. Foi demonstrado que portadores da SD apresentam resposta imune diminuída em relação aos cromossomicamente normais. O objetivo desta pesquisa foi investigar diferenças nos parâmetros clínicos periodontais e níveis de expressão dos genes Interferon-gama (IFNG), Interferon-gama receptor 1 (IFNGR1), Interferon-gama receptor 2 (IFNGR2), Interferon-alfa (IFNA), Interferon-alfa receptor 1 (IFNAR1), Interferon-alfa receptor 2 (IFNAR2), Janus-quinase 1 (JAK1), Transdutor de sinal e ativador da transcrição 1 (STAT1) e Fator de regulação de interferon 1 (IRF1) em indivíduos com SD que apresentam ou não DP e em indivíduos cromossomicamente normais. Fizeram parte deste estudo 80 indivíduos entre 7 e 57 anos de idade subdivididos em 4 grupos: SD com DP (A); indivíduos com SD sem DP (B); indivíduos não-sindrômicos (Controle) com DP (C) e indivíduos Controle sem DP (D). A expressão gênica foi investigada por meio de quantificação relativa utilizando a técnica da Reação em Cadeia da Polimerase (PCR) em Tempo Real. Para o índice sangramento à sondagem (SS) não houve diferença entre os grupos A e 21 C. A periodontite crônica localizada foi o tipo prevalente tanto entre indivíduos com SD como Controle. Considerando os parâmetros clínicos, não foram encontradas diferenças na periodontite crônica localizada entre os indivíduos com SD e Controle, assim como para a periodontite crônica generalizada. Com relação à análise genética, observou-se que indivíduos dos grupos com SD em relação aos grupos cromossomicamente normais (A+B-C+D) tiveram uma expressão de IFNG semelhante ao observado entre indivíduos do grupo... / Periodontal disease (PD) in individuals with Down Syndrome (DS) has an early, quickly and widespread onset and high prevalence when compared with individuals without the Syndrome. Only poor oral hygiene does not explain the severe periodontal destruction seen in DS patients. It has been shown that DS patients have a weaker immune response than people with normal number of chromosomes. The aim of this study was to investigate differences in periodontal clinical parameters and the expression levels of the genes Interferon-gamma (IFNG), Interferon-gamma receptor 1 (IFNGR1), Interferon-gamma receptor 2 (IFNGR2), interferon-alpha (IFNA), interferon-alpha receptor 1 (IFNAR1), Interferon-alpha receptor 2 (IFNAR2), Janus-kinase 1 (JAK1), Signal transducers and activators of transcription 1 (STAT1) and Interferon regulatory factor 1 (IRF1) in DS patients with and without periodontal disease in comparison with chromossomically normal individuals. A total of 80 individuals aged 7 to 57 years participated in this study and were divided into 4 groups: DS with PD (A); DS without PD (B); individuals without DS (control) with PD (C) and individuals without DS (control) and without PD (D). A quantitative RT-qPCR was used to investigate gene expression. There was no difference between groups A and C regarding the bleeding on probing 25 (BOP) index. The most prevalent type of periodontitis seen in this study was the localized chronic periodontitis, both in individuals with and without DS. Considering the clinical parameters, localized and generalized chronic periodontitis did not differ between individuals with and without DS. Regarding genetic analysis, individuals of the groups with DS in relation to the groups without DS (A+B-C+D) showed an IFNG expression similar to that seen among the individuals of groups control with PD (C-D). However, individuals... (Complete abstract click electronic access below)

Submitted by Noeme Timbo (noeme.timbo@metodista.br) on 2017-06-27T14:35:36Z No. of bitstreams: 1 Danielle Lueth Assaf.pdf: 1674732 bytes, checksum: bc8e2ad44b421c8f851b66f2aea6ba89 (MD5) / Made available in DSpace on 2017-06-27T14:35:36Z (GMT). No. of bitstreams: 1 Danielle Lueth Assaf.pdf: 1674732 bytes, checksum: bc8e2ad44b421c8f851b66f2aea6ba89 (MD5) Previous issue date: 2017-03-23 / This research aims to expand the understanding about a theme that is gaining prominence in our society, day after day: the inclusion of people with disabilities. With the new public policies, a constant updating is necessary, aiming at the improvement of the quality of the experience of disabled people in the school environment and the expansion of their learning capacity. Although the theme is not new, with the advent of the Magna Carta, and the fundamental rights and guarantees of the citizen, a new systematics has been inevitable to deal with this issue. It is a controversial topic and therefore specific field research was required. There is great divergence among professionals: in favor, against or partially against total or partial inclusion. There are, therefore, those who stand up for the insertion of these children into specialized institutions or the presence of specific classrooms for all students who have some type of disability. Thus, the present work aimed at the following objectives: to reflect on the public policies of inclusive education and its applicability in the reality of Brazilian education; Understand aspects inherent to Down Syndrome, such as etiology and characteristics, as well as aspects of development and learning; To seek, understand and reflect on pedagogical practices that aim to aid in the learning process of students with Down Syndrome; And reflecting on the learning conditions offered to these students by regular education and how specialized education can contribute. For the development of the following work, it was necessary a bibliographic review in the desired area, field research in a specialized school, collection of historical data, collection of data through interviews and testimonies and, finally, the analysis of the data obtained in the research with the school, emphasizing that the methodology used was the qualitative method, through interviews conducted with semi-structured questionnaire and observation of the context, as mentioned above. It is important to mention that the montessorian pedagogy was investigated, bringing significant benefits to the learning of the students with Down's syndrome, through the adaptation of the method. / A pesquisa realizada visa ampliar a compreensão a respeito de um tema que, dia a dia, ganha força em nossa sociedade: a inclusão de pessoas com deficiência. Com as novas políticas públicas, é necessária uma constante atualização, visando o aprimoramento, a melhoria da qualidade da experiência de pessoas deficientes no ambiente escolar e a ampliação de sua capacidade de aprendizado. Embora a temática não seja nova, com o advento da Carta Magna, e os direitos e garantias fundamentais do cidadão, fez-se inevitável uma nova sistemática para lidar com essa questão. É uma temática controversa e por isso foi necessária pesquisa de campo específica. Existe grande divergência entre os profissionais: a favor, contra ou parcialmente contra a inclusão total ou parcial. Há, portanto, aqueles que defendem a inserção dessas crianças em instituições especializadas ou a presença de salas de aula específicas para todos os alunos que possuem algum tipo de deficiência. Assim, o presente trabalho pretendeu os seguintes objetivos: refletir acerca das políticas públicas de educação inclusiva e sua aplicabilidade na realidade da educação brasileira; compreender aspectos inerentes à Síndrome de Down, tais como etiologia e características, bem como aspectos do desenvolvimento e aprendizagem; buscar, compreender e refletir acerca de práticas pedagógicas que visem auxiliar no processo de aprendizagem dos alunos com Síndrome de Down; e refletir acerca das condições de aprendizagem oferecidas a esses alunos pelo ensino regular e de que maneira o ensino especializado pode contribuir. Para o desenvolvimento do trabalho que se segue, foi necessária uma revisão bibliográfica na área pretendida, pesquisa de campo em escola especializada, levantamento de dados históricos, coleta de dados através de entrevistas e depoimentos e, por fim, a análise dos dados obtidos na pesquisa junto à escola, ressaltando que a metodologia empregada foi o método qualitativo, por meio de entrevistas realizadas com questionário semiestruturado e observação do contexto, como mencionado acima. Importante mencionar que a pedagogia montessoriana foi investigada, trazendo benefícios significativos à aprendizagem do aluno com Síndrome de Down, por meio de adaptação do método.