Exploring internet needs and use among adolescents with haemophilia: a website development project

Youth frequently access health information online, yet little is known about internet use among adolescents with haemophilia (AWH). A youth-centred, age-appropriate online programme is being developed to address the heightened educational needs of AWH as they transit from paediatric to adult care. To describe internet needs and use among AWH treated at the Hospital for Sick Children and determine the features that would make the website useable and desirable for this population. Semi-structured interviews addressed participants' internet use and thoughts about a website for AWH. The interviews were audio-recorded and transcribed verbatim. Three independent reviewers coded the data to determine descriptive categories and grouped them into themes. Eleven of 12 subjects approached consented to interviews. Data saturation was achieved. Most participants had used the internet to find haemophilia information, although none could recall specific websites they had visited for information. Some felt more comfortable using the internet than asking health care providers. Others liked the 24/7 availability of the internet if questions arose. Overall, they felt a website for AWH would help them to learn about haemophilia and explain it to others. Online social networking with an older peer mentor with haemophilia, as well as with others of their age was cited as a potentially valuable source of support. AWH are interested in a haemophilia website and have identified a variety of features which they believe may help to support them during transition to adult care and beyond. Website development is ongoing.