Work Packages

Work Plan

The tasks involved in the work plan are organised into 6 work packages (WP).

Work Package 1: Coordination, monitoring and quality management

  1. To manage the consortium
  2. To coordinate efforts and to ensure information flow between participants
  3. To provide data management and data sharing

Work Package 2: Policy and information environment analysis

  1. 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
  2. To review and compare the information for health care professionals regarding the management of YOD in the six countries
  3. To identify and compare the information provided for people with YOD and their carers by national organisations

Work Package 3: Needs assessment

  1. To conduct a review of the literature on needs of people with YOD and their carers
  2. To identify the needs of people with YOD and their carers at different stages of the disease
  3. 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:

  1. To design an intervention for carers according to the identified healthcare policies, strategies and needs of people with YOD
  2. To provide an internet-based, interactive convenient learning course format of delivery

Work Package 5: Pilot Study

  1. To evaluate the learning course in a pilot study with regard to feasibility, acceptance and user satisfaction
  2. To compare and evaluate different outcome measures and to estimate effect sizes
  3. To perform an economic evaluation of the intervention

Work Package 6: Dissemination, implementation and exploitation

  1. To communicate emerging scientific findings of the project
  2. To develop a comprehensive dissemination and sustainability strategy