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Post-school adult life for young people with Down syndrome
Get PDFDown syndrome is a chromosomal birth disorder affecting one in 650 to 1000 live births in Western Australia. The life expectancy for people with Down syndrome has increased dramatically over the past two generations leading to these young people having changing needs in terms of social, economic and personal life. Encompassed within this, is the successful transition from school to post-school, a time of upheaval, stress and important decisions for young people with intellectual disabilities. The International classification of functioning, disability and health (ICF) is a world renowned framework which provides a scientific basis and standardised language for describing and classifying health domains, health-related states and health outcome measurement. To examine the complex and fluid concept of transition from school to post-school for young people with Down syndrome this thesis employed the ICF as a guiding framework.
The purpose of Study one was to describe the relevant literature on this transition for young people with an intellectual disability and identify gaps within the current knowledge base. The review found that the current body of literature on transition rarely considered those with moderate and severe disability and a whole of person approach was needed in future research.
Study two examined the meaning of wellbeing from the perspective of children and young people with disabilities via focus groups. Six themes of the meaning of wellbeing emerged from the data describing, ‘having things to do’ (participation), ‘the importance of good friends’ (relationships), ‘home is where the heart is’ (family factors), ‘nothing seems to stick in my brain’ (anxiety relating to performance at school), ‘you need some way to cool down’ (coping strategies/resilience) and ‘feeling good about yourself’ (personal growth and development). The usefulness of the ICF in framing and guiding research in disability was strongly evident. Study two provided evidence from the perspective of young people with disabilities of the importance of participation. This study informed the subsequent studies in this thesis which focused on the transition from school to post-school for young adults with Down syndrome.
The Down syndrome ‘Needs Opinions Wishes’ database is a population-based database of families of young people living in Western Australia with Down syndrome. Data were collected from families at three time points in 2004, 2009 and 2011 via questionnaires as paper copies, over the internet or via phone interviews. Part one addressed factors related to the young person themselves including medical impairments, behaviour, participation in school or post-school occupations, social relationships, accommodation and functioning in activities of daily living. Part two provided information about family functioning and communication, quality of life, agreement between parents and presence of formal and informal supports.
Study three used the data from the 2009 wave of data collection to investigate the relationship between functioning in activities of daily living (ADL) and post-school day occupations of young adults with Down syndrome. In the 2009 wave of questionnaires data regarding post-school day occupations were collected for the first time, and therefore employed for this study. This study was most strongly aligned with the ‘activities’ component of the ICF. Young adults who were reported as functioning better within self-care, community and communication skills were more likely to be participating in open employment or training than those in sheltered employment or day recreation programs.
Study four explored the relationship between family quality of life, day occupations and activities of daily living of the young person with Down syndrome based on the 2009 data. It revealed that families of young people who were participating in sheltered employment tended to report poorer family quality of life than those participating in open employment after adjusting for personal characteristics, behaviour and family income. Inclusion of family supports reduced the strength of this relationship.
Study five explored any relationship between post-school day occupations and changes in a young person’s behaviour via a longitudinal analysis of data from 2004, 2009 and 2011. Behaviour generally improved through adolescence and into early adulthood for young adults with Down syndrome. It was also evident that the behaviour of those participating in open employment for two consecutive years improved compared to those engaged in other day occupations. This study highlighted the potential important influence that environment can have on young person’s behaviour change but also the need for further research on the direction of this relationship.
Finally, Study six, described the social participation of young adults with Down syndrome and examined its relationship with the physical and social environment using data from 2011. Study three, four and five were aligned with different components of the ICF and examined their relationship with the component of participation. This study was again aligned with the participation component of the ICF yet examined different domains to those previously investigated. This study was also strongly aligned with the environment component of the ICF. It revealed that young adults participation in social roles was more influenced by the physical than the social environment, however both associations were weak. The most commonly reported barriers to participation were attitudes of strangers, support from friends, availability of jobs and public transport. The most commonly cited facilitators to a young person’s participation were family and close friends, young person’s current workplace (if they were employed), and attitudes of superiors and colleagues of the young person. Overall this thesis provides information on the interactions between the different components of the ICF for young people with Down syndrome who are transitioning from school to post-school. Domains of participation have been explored in detail revealing the important influence of environmental factors on social participation. Participation in different post-school day occupations was associated with changes in behaviour and linked with family quality of life. These findings add substantial knowledge to this field of research and have the potential to guide policy development and future intervention studies
Gross motor abilities and interventions in girls and women with Rett syndrome: A literature review ; Longitudinal video analysis of gross motor abilities of girls and women with Rett syndrome
Get PDFObjective: To explore research relevant to an understanding of gross motor abilities and highlight possible directions for gross motor intervention in girls and women with Rett syndrome. A secondary objective was to describe mouse model research which has the potential to add to an understanding of gross motor abilities in this population. Methods: Electronic searches of five databases, manual searches of an external resource library and manual searches of reference lists were undertaken. The key words imputed during these searches included; mobility, Rett syndrome, functioning, mouse model, therapy and intervention. Search terms were truncated, exploded and adjusted to achieve optimum results. A narrative review was possible. Results: The searches of the literature yielded research which will be discussed under the headings; phenotype-genotype correlations, gross motor functioning, therapy interventions, involving both gross motor interventions in girls and women with Rett syndrome and mouse model research. The research found that most girls/women with Rett syndrome can sit independently, approximately half can walk and many have difficulties with transitional movements. More complex gross motor skills, such as transitions, walking on a slope and stepping over an obstacle, have been highlighted as especially difficult for this population. Video analysis is an emerging methodology in this area and has the potential to ·provide better observational data, to measure change, investigate gross motor abilities and evaluate the effectiveness of gross motor interventions. Mouse model research has investigated environmental enrichment as a treatment paradigm resulting in amelioration of gross motor deterioration. Similarly, increasing the expression of BDNF in mice with MeCP2 mutants has resulted in reduced locomotor deficit. Conclusion: Further longitudinal and cross-sectional studies with rigorous design and larger sample sizes are required in order to guide therapeutic gross motor intervention in girls and women with Rett syndrome. Purpose: Rett syndrome is a rare neurological disorder often associated with a mutation in the MECP 2 gene. It results in severe physical and intellectual disability with a gradual decrease in acquired gross motor abilities. This study explored changes in gross motor abilities over three years in girls/women with Rett syndrome, recruited from a population-based data base. The relationships between these changes and age and genotype were investigated. Method: Families participating in the Australian Rett Syndrome Database were invited to participate in a video study. Ninety-nine families provided a video in 2004 and 70 of these cases submitted a second video in 2007. Gross motor data for the two time points were scored through the use of an assessment tool based on the Gross Motor Function Measure. Results: The level of general gross motor skills decreased in 58 (82.9%) and increased in 12 (17.1 %) cases (mean decrease in z-score 0.50 ± 0.59). The level of complex gross motor skills decreased in 67 (95.7%) and increased in 3 (4.2%) cases (mean decrease in z-score 1.58 ± 1.11). General motor skills declined for cases in each of the four age-groups. Compared to the girls who were younger than 8 years, the decrease in complex motor skills was greater for girls aged 13:S19 years (P=0.021) and women \u3e19 years (P=0.071). Conclusion: Over a 3-year period, there was a small amount of deterioration in general gross motor skills for girls of all ages and a larger deterioration in complex gross motor skills during the teenage years. This detailed understanding of the characteristics of declining gross motor skills in Rett syndrome could contribute to the development of strategies to ameliorate these trends
Management of mental ill health in people with autism spectrum disorder
No full textAdults with autism spectrum disorder (ASD) may require medical assessment and care, especially for mental health conditions. Although substantial knowledge and resources are available regarding the management of mental ill health in children with ASD, substantial gaps remain for adults with ASD. Diagnostic overshadowing, limitations of communication skills and the heterogeneous nature of this patient population can make practice in this area more challenging, and can contribute to poorer outcomes, including overprescribing of psychotropic medications
Going Beyond Counting First Authors in Author Co-citation Analysis
Get PDFThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
Variations on the Author
Get PDF“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
Appropriate Similarity Measures for Author Cocitation Analysis
Get PDFWe provide a number of new insights into the methodological discussion about author cocitation analysis. We first argue that the use of the Pearson correlation for measuring the similarity between authors’ cocitation profiles is not very satisfactory. We then discuss what kind of similarity measures may be used as an alternative to the Pearson correlation. We consider three similarity measures in particular. One is the well-known cosine. The other two similarity measures have not been used before in the bibliometric literature. Finally, we show by means of an example that our findings have a high practical relevance.information science;Pearson correlation;cosine;similarity measure;author cocitation analysis
Dispelling the Myths Behind First-author Citation Counts
Get PDFWe conducted a full-scale evaluative citation analysis study of scholars in the XML research field to explore just how different from each other author rankings resulting from different citation counting methods actually are, and to demonstrate the capability of emerging data and tools on the Web in supporting more realistic citation counting methods. Our results contest some common arguments for the continued
use of first-author citation counts in the evaluation of scholars, such as high correlations between author rankings by first-author citation counts and other citation
counting methods, and high costs of using more realistic citation counting methods that are not well-supported by the ISI databases. It is argued that increasingly available digital full text research papers make it possible for citation analysis studies to go beyond what the ISI databases have directly supported and to employ more
sophisticated methods
koamabayili/VECTRON-author-checklist: VECTRON author checklist
No full textWe have done our best to complete the author checklist relating to the use of animals in the hut study. Note that the objective for the hut study was to evaluate the IRS treatment applications for residual efficacy against Anopheles mosquitoes, including the local An. coluzzii mosquito population. Cows were only used to attract mosquitoes into the huts and no tests were carried out directly on the cows. The author checklist is intended for use with studies where experiments are carried out on animals, which is why we have had such difficulty in completing this for the hut study, as many of the questions do not relate to how the cows were used
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