Post-school adult life for young people with Down syndrome
Down 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.
Transition, Intellectual disability, ICF, Adolescence, Down Syndrome, Youth and mental disabilities, School to work, Transition to work, Human Resources Management, Other Education, Social and Behavioral Sciences
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Edith Cowan University, Research Online, Perth, Western Australia