Recommendations

SUMMARY OF RECOMMENDATIONS:

  • Target and promote the project at young people affected by bleeding disorders (who have a bleeding disorder, carry the gene, or are a sibling) in the 13–30 year age group
  • Investigate how to reach young people who are currently disconnected from the community
  • Explore the “hating my haemo” phase with young people
  • Explore a range of options to enable young people to communicate with each other, eg web site, social media, telephone, Skype and face to face (camps, weekends and “catch-ups”)
  • Develop the role of young people as peer educators and mentors
DEVELOP A WEB SITE THAT HAS:
  • Sections to share experiences and personal stories
  • Accurate information in ‘youth friendly’ language
  • Information for girls and siblings
  • Information on priority issues
OTHER RECOMMENDATIONS:
  • Provide feedback and education to schools, the wider community, health professionals and government on priority issues for young people
  • Investigate how to prepare pre-teens for the skills they will need to become independent.

Date last reviewed: 08/09/2016