Transition of knowledge at transition
Transition to adult services is acknowledged to be a very challenging time for many young people and their families. It is often a time of increased stress and anxiety and occurs at a time of multiple changes in the young person’s life, including change in education or start of occupation. Expectations on young people in terms of their responsibility for the management of their own long-term condition are often very different in adult compared to paediatric services. It has been widely reported that increased knowledge and understanding of the condition can significantly reduce anxiety and stress that may be associated with a long-term condition.
This project aims to assess the level of knowledge of a long-term condition, epilepsy, held by a group of young people transitioning to adult services, as well as the expectations of the medical teams. It is envisaged that this will enable the team to begin to develop a care pathway that examines and evaluates the transfer of knowledge from the parents/ medical team as the young person progresses through the service towards transition. The project will also focus on screening cognitive skills to enable the assessment of abilities in terms of understanding and level of education when planning to share knowledge. It will also collate information on mood and behaviour to assess links with knowledge and management skills of the condition.