The National Hemophilia Foundation (NHF) is excited to partner with chapters to deliver Collaborating in Care educational modules, which offer fresh, cutting-edge and practical content on quality of life topics for people with hemophilia and their families.
Module topics are designed to close the gaps in education identified in the HERO (Haemophilia Experiences, Results and Opportunities) Study. The study, conducted by Novo Nordisk, examined quality of life and psychosocial concerns affecting people with hemophilia and their families. These six modules will be offered from 2014-2016:
Module 1: Communicating with Your Provider About Pain (available now)
Module 2: Getting Unstuck: Overcoming Roadblocks to Intimacy and Relationships (available now)
Module 3: Out of the Woods: Skills for Coping with Anxiety and Depression (available now)
Module 4: Communicating in the Workplace (available starting mid-2015)
Module 5: Skills for Disclosing a Bleeding Disorder (available in 2016)
Module 6: Advocacy and Bleeding Disorders (available in 2016)
The modules are offered as live, one-hour events that typically feature a presentation and interactive activities, such as role play exercises, breakout groups or question-and-answer sessions. They are delivered on site at a venue, date and time requested by a chapter. Modules may be offered as a stand-alone activity or as part of a larger chapter event.
The target audience is people with bleeding disorders and members of their support networks. NHF hopes that by increasing knowledge of comprehensive management of hemophilia, these modules can help people to improve physical health, emotional well-being and overall quality of life.
“An activity like this is so important for people with bleeding disorders and for this community,” says Georgia Panopoulos, PhD, LP, a clinical psychologist specializing in pain management. He developed content for the first module. “Research has shown us that people want to know more about these quality of life topics. They want to know practical coping strategies for daily life, as well as steps they can take to plan for the future. In delivering the modules, it has been wonderful to see how enthusiastic people are, embracing this information and asking questions.”
To arrange a module activity in your area, talk to your local chapter. Interested chapters can visit the Collaborating in Care section on the NHF Chapter Intranet to learn more about the modules and how to book one of these events.
This activity is supported by an educational grant from Novo Nordisk.
For more information, contact Jessica Morrison, Program Manager: jmorrison@hemophilia.org.
