Supporting the transition to adulthood: the experiences of parents, carers and family members across four European countries

A fresh perspective on the transition to adulthood and the range of support roles that are undertaken at this stage by parents, carers and family members, from a researcher who is also the parent of a 19-year-old with... [ view full abstract ]

A fresh perspective on the transition to adulthood and the range of support roles that are undertaken at this stage by parents, carers and family members, from a researcher who is also the parent of a 19-year-old with Asperger's Syndrome. High functioning young adults with ASD, ADHD and/or Tourette's Syndrome, and their families, were interviewed in four European countries: Scotland, Italy, Norway and the Czech Republic. Fifty people agreed either to be interviewed or to complete a questionnaire. Topics discussed with each participant included maintaining health and wellbeing; developing friendships and social relationships; and promoting sustainable independent living. Their authentic voices are the basis for a consideration of the changing nature of the parent/child relationship in the late teens and twenties; the relationship between services/service providers and family members; and the level of commitment implicitly and explicitly required of the family in order to achieve the best outcomes for young people with spectrum conditions. The presentation concludes with guidelines in the form of "do's and don'ts" to promote effective partnership working with parents, carers and siblings of this age group. The project was undertaken with a Travel Fellowship from the Winston Churchill Memorial Trust.

All participants in the study were pre-selected by locally based organisations with whom they had an established and ongoing relationship: for example, parents' associations, supported employment agencies, and other support... [ view full abstract ]

All participants in the study were pre-selected by locally based organisations with whom they had an established and ongoing relationship: for example, parents' associations, supported employment agencies, and other support workers. Having given their consent to people already known to them, each participant then received an information sheet in their own language, explaining the purpose and nature of the project, the potential uses to which findings would be put, and giving a contact name, postal address and email address. Each participant also received a consent form, and could specify their preference over the use of any identifying information, for example first name, full name, or an alias. Each participant was also asked to indicate how and where any photos may (or may not) appear. Where interviews were conducted face to face, these details were reinforced orally and participants invited to email with concerns or queries. It was explained to each participant that they did not have to answer every question. Before publication each participant was sent the section of the report based on their contribution and given the opportunity to amend or withdraw anything relating to themselves before the final draft stage.

All the organisations and individuals who took part in the project did so freely and without remuneration of any kind.

The project was funded by the Winston Churchill Memorial Trust, through a grant covering travel and subsistence costs only, plus project related expenditure such as translation and interpretation. Other than this the Trust exercised no control or influence over the scope, direction, methodology or findings of the project. No other finance was involved and the researcher was completely independent of any other organisation.