To understand the issues affecting young people with bleeding disorders, we first looked at the literature in Australia and around the world. After this, we consulted directly with young people in Australia, parents, the wider bleeding disorders community and haemophilia health professionals about what they thought the issues were for young people and what would assist them.
Invitations to take part in the consultation were sent out through HFA and State and Territory Foundation newsletters, the HFA facebook page and Haemophilia Centres.
THANKS TO ALL WHO PARTICIPATED:
- 27 young people who have a bleeding disorder, carry the gene, or are siblings
- 9 parents
- 7 State/Territory Foundations
- 16 haemophilia health professionals
The needs assessment report was completed in July 2012. It outlines various issues which were raised in the consultation and includes the topics of information that participants believed need to be targeted at young people to help them better understand their bleeding disorder, for example information about sport, travel and transition presented on a web site or other media source. The report also recommends actions to address these issues and others raised in the consultation process.