Presentations for Families
The Current Storm
Massive insurance reforms are impacting hemophilia patients across the country. How will they affect you? In this presentation, currently the most popular in the hemophilia community, you will uncover the origins of the Current Storm and learn the answers
to some key questions: Why are insurance companies trying to limit our choice of product and provider. Why is factor being targeted for budget cuts? How might this impact your HTC or factor provider? How may it impact your insurance policy? Find out what our national leaders are doing to protect against the storm, and learn how you can act today to protect your right to choice.
Free copies of PEN’s “The Coming Storm” (February 2005), 60 minutes.
Raising a Child With Hemophilia
Your child has hemophilia. Now what? This presentation walks you through the difficult first year of your life with hemophilia, and helps prepare you to handle anything that comes your way: medical treatment, emotional turmoil, the first infusion, family dynamics, school, sports, and purchasing medicine. A wealth of information is presented in a simplified format to educate and empower new parents, and help those facing new challenges with their children.
Free copies of Raising a Child With Hemophilia, 60 minutes.
How Children Understand Hemophilia
What do you tell your five-year-old when he asks why he has hemophilia?
When you know how a child understands certain concepts, you can better answer his questions and empower him with knowledge appropriate to his age. With appropriate knowledge, a child is less apt to suffer low self-esteem, and less likely to fear bleeds and medical procedures.
This presentation is an in-depth exploration of how children think, and how they understand hemophilia as they develop and mature. Ms. Kelley discusses children’s understanding of such topics as the definition of hemophilia and severity levels, how blood clots and factor works, and how people get hemophilia. The presentation also offers a fascinating look at the way children understand hemophilia according to whether they are on prophylaxis. Ms. Kelley offers practical tips to help parents answer children’s questions about hemophilia based on how they think, along with amusing anecdotes from real-life interviews.
Parents will discover that children think differently than adults, and will learn how children of different ages think. Parents will leave the presentation better prepared to appropriately answer their children’s questions about hemophilia as they mature, enabling them to become more independent, less afraid, and more knowledgeable.
Slides, audience participation, free copies of book Teach Your Child About Hemophilia for distribution. Can also be presented as a hands-on workshop. Approximate time: 45 minutes.
Empower Yourself About Hemophilia
It’s normal to feel a wide range of emotions when you hear that your child has hemophilia. But at what point do you move beyond being a “victim” of hemophilia, and become victimized by hemophilia? Through a variety of real-life scenarios, this presentation examines the way hemophilia can cause many people to feel that they’ve lost control of their lives. Goal-setting and taking action are emphasized as keys to regaining mastery of emotions. The audience is requested to set actual goals with “homework” to pursue immediately after the talk. Participants will learn new ways to avoid self-defeating behaviors and thoughts, and leave with strategies to prevent other people and situations from controlling feelings.
Slides, audience participation, free copies of Empower Yourself About Hemophilia for distribution. Approximate time: 30-45 minutes. Can also be tailored to fit meeting schedule.
Empowerment Through Education
The hemophilia community offers a vast array of books, quarterly magazines and newsletters. Surprisingly, many parents are still unaware of the many free resources available. This presentation stresses the need for parents and patients to be proactive in educating themselves by taking advantage of free available resources. A unique slide show describes, one at a time, all major books, binders, booklets, CD ROMs, and newsletters currently available. Each publication is discussed in terms of its suitability for families, adults, children or the medical community, and its style and quality.
40 color slides, handouts with addresses. Approximate time: 20-30 minutes.
Communicating with Confidence
Hemophilia requires communication—with doctors, school staff, and our own families. But the stress of hemophilia can cause our defenses to increase, and our understanding and listening skills to decrease. Stress can also affect the friends, relatives and professionals who support us, causing them to say the wrong things. Why do people sometimes react in unhelpful ways? Why do we feel defensive or hurt? This workshop explores the biological and emotional causes of reactivity and defensiveness, and offers useful skills for regaining emotional control. Participants will learn to express their thoughts and feelings in a productive way. The workshop concludes with concrete methods of opening communication channels. These new skills allow us to express our feelings without being defensive, and without causing irreparable harm to the important relationships that help us cope with hemophilia.
Handouts, flipchart, resources for follow-up. Approximate time: 15-60 minutes depending on schedule.
Open Workshop
In this workshop, audience members introduce themselves and share a challenge they currently face. All audience members then vote on two or three topics for the group to discuss. The facilitator moderates the discussion, supplying information and real-life examples when needed; and ensures that everyone has a chance to participate, rights are respected, and the conversation is enlightening and motivating. This has proved to be a popular format for small, intimate family gatherings.
Handouts, flipchart, resources for follow-up. Approximate time: 15-60 minutes depending on schedule.
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