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.
Date last reviewed: 08/09/2016
MAJOR ISSUES IDENTIFIED IN THE NEEDS ASSESSMENT INCLUDED:
LIVING A ‘NORMAL’ LIFE
More effective treatment and care for young Australians with bleeding disorders has created a new generation which has expectations of living a ‘normal’ life. However, this has meant that young people now have fewer opportunities to connect with their peers or older members of the community through Haemophilia Centre visits or clinics and to talk with others about managing the bleeding disorder-related problems that they nevertheless do experience or the long-term impact of bleeding complications. For young people at all levels of severity, experiencing the reality of living with a bleeding disorder and the complications that can result, when they have been educated to expect a ‘normal life’, can be isolating and confronting.
DISENGAGEMENT AND NON-COMPLIANCE
Consultation with the community, parents and health professionals has highlighted that that as teenagers, many young people also disengage from the bleeding disorders community and do not comply with their treatment and care regimes for a range of reasons:
- Peer pressure and wanting to be ‘normal’ or needing to look ‘cool’
- Pressures of study
- ‘Don’t care’ attitude
- Maturity issues and stages of development
- That most people with haemophilia are male, at this age they feel “invulnerable”, and “boys don’t talk”.
PERSPECTIVES OF YOUNG PEOPLE
In contrast, consultation with young people indicated that they experience a range of problems due to their bleeding disorder at this age, including:
- Understanding their medication and how to manage it
- Managing pain
- Missing out on school, sport, travel or work due to bleeding problems or appointments
- Feeling different and alone
- Discrimination, bullying and stigma
- Issues in managing their relationships with health professionals
- Negotiating health care services and understanding what is available
- A need for health services to be more flexible to accommodate their needs.
- It is important to them to get to know their body as it develops during puberty and learn how their bleeding disorder affects them individually.
One spoke of a “hating my haemo” phase and that while he was now resigned to living with his bleeding disorder, he still wished he did not have it.
Younger people in the 13-15 year age group described particular difficulties in learning the skills to:
- Manage their treatment, including self-injection
- Explain their health condition or health needs to others, for example, to friends and other school students, friends’ parents, teachers and health professionals.
RISK-TAKING AND EXPERIENCING LIFE
For Haemophilia Foundations and health professionals, discontinuing treatment, uninformed decision-making and risk-taking related to career choice, sports and other physical activities was of great concern because of the permanent musculo-skeletal damage or injury that could result. They noted that disabilities acquired through haemophilia or injury could cause young people to drop out of participation in sports, school, work, or with their peers, and could lead to them becoming disempowered and isolated. They were aware of problems with depression, anxiety and self-esteem among young people with bleeding disorders.
Young people, on the other hand, wanted the opportunity to explore their independence and have the opportunity to make mistakes and learn from them.
ENVIRONMENTS FOR CONNECTION
Young people, community members and health professionals saw the Beyond Prophylaxis project as an opportunity to take positive steps towards creating spaces where young people could connect, share experiences and learn from each other, inform themselves about bleeding disorders, develop life skills and have some fun together.
They agreed there should be a mix of options for contact and connection:
- Web-based and social-media technology based communication tools
- Face-to-face meetings, such as national youth camps, weekends or “catch-ups”
- Using the telephone and Skype to connect
- Other information resources, including print based.
PEER EDUCATION AND MENTORING
It was important to young people to have opportunities to share stories and learn from each other’s experiences; for example, to have video and story blogs on a web site and their own examples of ‘how to’. They also agreed that it was important to develop a group of older young people who could take on the role of peer educators and mentors, with the potential for being community leaders in the future.
ENGAGING THE DISENGAGED
Engagement with young people with bleeding disorders in the consultation was difficult and highlighted the need for face-to-face connection and other strategies to build trust and confidence in HFA’s work in this area. All groups consulted referred to young people with bleeding disorders who are isolated and difficult to engage, often because they prefer not to identify with having a bleeding disorder or with the bleeding disorders community or do not find the community activities attractive. They noted that isolation from peers with bleeding disorders and community could contribute to the sense of being alone and decrease opportunities for learning effective ways to manage their bleeding disorder from peers, community mentors or health professionals. Further investigation into engaging with this group and understanding their needs would be valuable.
PREPARING ADOLESCENTS FOR INDEPENDENCE
Health professionals also noted the need to prepare pre-teens for the skills they will need to become independent in the future, before they start to disengage from their Haemophilia Centre during their early teenage years. This work will need more exploration to enable it to be scoped.
PROPOSED WEB SITE
The project’s web site could provide a more attractive forum for young people to discuss their needs and experiences and explore sensitive issues anonymously and honestly. It could provide evidence-based information on priority issues such as health, lifestyle and life skills for working, relationships and socialising in the language of the young people accessing it and create a space for peer education and connection. Ensuring that this is developed appropriately and any forums moderated carefully would involve the work of a skilled professional.