Work Plan
The tasks involved in the work plan are organised into 6 work packages (WP).
Work Package 1: Coordination, monitoring and quality management
Tasks:
- To manage the consortium
- To coordinate efforts and to ensure information flow between participants
- To provide data management and data sharing
Work Package 2: Policy and information environment analysis
Tasks:
- To analyse and compare the health and social care policies including means of financing and delivering health care in participating countries with regard to people with YOD and their carers
- To review and compare the information for health care professionals regarding the management of YOD in the six countries
- To identify and compare the information provided for people with YOD and their carers by national organisations
Work Package 3: Needs assessment
Tasks:
- To conduct a review of the literature on needs of people with YOD and their carers
- To identify the needs of people with YOD and their carers at different stages of the disease
- To explore differences in experiences, needs and access to services of people with YOD and their carers across 6 European countries
Work Package 4: Intervention design and product developmen:
Tasks:
- To design an intervention for carers according to the identified healthcare policies, strategies and needs of people with YOD
- To provide an internet-based, interactive convenient learning course format of delivery
Work Package 5: Pilot Study
Tasks:
- To evaluate the learning course in a pilot study with regard to feasibility, acceptance and user satisfaction
- To compare and evaluate different outcome measures and to estimate effect sizes
- To perform an economic evaluation of the intervention
Work Package 6: Dissemination, implementation and exploitation
Tasks:
- To communicate emerging scientific findings of the project
- To develop a comprehensive dissemination and sustainability strategy