News

Needs assessment snapshot

Sun 2 Dec 2012

As part of the Beyond Prophylaxis project, HFA carried out a needs assessment to help understand the needs of young people affected by bleeding disorders in Australia.

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 describes the issues which participants discussed 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 deal with these issues, as well as other issues brought up in the consultation.

Summary of Results

 Major issues identified by all the groups who were consulted:

• Living a ‘normal’ life
• Disconnection from the bleeding disorders community
• Not following treatment plans
• Understanding the views of young people
• Experiencing a ‘hating my haemo’ phase
• Risk-taking and experiencing life
• Creating spaces for connection
• Peer education and mentoring
• Reaching people who have disconnected (and involving them)
• Preparing adolescents for independence
• The need for the Factored In web site

 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 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, such as travel, sport and transition
• Develop the role of young people as peer educators and mentors
• 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.

To read the needs assessment in full, click here – Haemophilia Foundation Australia, 2012. Beyond Prophylaxis Project: understanding and addressing the unmet needs of young people with bleeding disorders [PDF, 1.4MB] HFA: Melbourne.

Last Reviewed: 2/12/2012