Investigating the Experiences and Educational Needs of Adolescents with Hemophilia Prior to Transition of Care: A Website Development Project.

Adolescents with hemophilia (AWH) have heightened educational needs as they become more independent and transition from pediatric to adult care. Poor compliance during adolescence may lead to suboptimal management and its long-term sequelae. An innovative website is being developed to meet these educational needs and foster the acquisition of self-management skills.

To examine the educational needs of AWH treated at The Hospital for Sick Children and explore how a web-based transition program can best support them.

Qualitative, semi-structured interviews with a purposive sample of AWH addressed subjects’ experiences with hemophilia, views about transition, internet use, and thoughts about an educational website. The interviews were audio-recorded and transcribed verbatim. Themes were identified through constant comparative analysis by three independent reviewers.

Eleven of twelve subjects that were approached consented to be interviewed and data saturation was achieved in the areas of interest. Important themes surrounding the hemophilia experience included personal identity and perception of their condition, challenges, raising awareness, and sources of support. Some participants had concerns about transition to adult care but many also recognized its benefits. There was a broad spectrum of perceived preparedness for transition. All participants felt comfortable using the Internet and overall, felt a website would help them to learn about haemophilia and explain it to others. Social networking with others with haemophilia was deemed desirable by many.

AWH are interested in a hemophilia website and have identified a variety of features which they believe may help to support them during transition of care and beyond.

Breakey:Baxter Bioscience Canada: Fellowship salary provided through unrestricted educational grant.