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First Step Frequently Asked Questions
 
What is First Step?

Programs for new parents and families of children newly diagnosed with bleeding disorders are an important element of the NHF National Prevention Program. Early education about bleeding disorders and prevention starting from the first years of life is highly effective.

The NHF First Step program is a collaborative model of new parent/family education. Chapters, associations, hemophilia treatment centers (HTCs), parents and guardians work together to provide education and support for families.

When did First Step begin?

In 1995, NHF and the Centers for Disease Control and Prevention (CDC) started First Step, a new parent and family program.

The First Step Steering Group of NHF was newly convened in 2000. Most of its members are parents of young children with bleeding disorders. Its goal is to reduce or prevent the complications of hemophilia and bleeding disorders in families with newly diagnosed children. The group works to ensure that the best educational materials are available to parents and families, and that effective local First Step teams are built.

How does First Step work?

An NHF chapter/association and an HTC work together to create a First Step team. The team includes a chapter/association member, an HTC representative and a parent. Most chapters and associations have already identified a National Prevention Program team. This team should work with the First Step team to ensure that the key prevention issues remain an integral part of First Step efforts.

The First Step team primarily coordinates two types of local activities:

  1. Small Meetings or Get Togethers, which can have both a formal and an informal component. Education on specific new family issues is the formal component. The opportunity to meet, talk and network with other parents, some of whom are new and others of whom are more experienced in dealing with bleeding disorders, is the informal component.

  2. Family-to-Family through the linking of new parents with mentoring parents. In April 2005 Train-the-Trainer, a training program for First Step Teams, was introduced to complement the First Step program. It fosters a collaborative approach to preventive care for new families by guiding the teams on how to implement a First Step program. It provides them with networking, relationship building and leadership skills to promote discussion between families and encourage family-to-family support.

What are First Step's goals?

It is important for the First Step team to identify and reach out to new parents and families with newly diagnosed children. Local hospitals or pediatricians may refer families to chapter, association or HTC services. Fliers about the First Step program can be distributed to local hospitals, medical groups, pediatricians, obstetricians and hematologists.

First Step provides an opportunity for new parents and families to connect with others like themselves. It creates a forum for the families to learn about bleeding disorders as well as a place where they can share their feelings, tell their stories and ask questions about their children and family life.

Who does First Step help?
First Step can assist all families, parents and guardians with a child diagnosed with a bleeding disorder whether or not the bleeding disorder is in the family history. For parents and families with newly diagnosed children, First Step can provide an opportunity for them to become more educated about bleeding disorders and to meet other new parents and families experiencing similar "firsts" in the life of their child with a bleeding disorder. More experienced parents with older children with a bleeding disorder can serve as mentoring parents who assist new families in a variety of ways.

Why is First Step important?

One of the most effective health education tools is peer-to-peer education. First Step offers the best in peer education, with its parent mentors and linking of family-to-family. In addition, it distributes the latest health information materials through local First Step Teams and the national NHF Steering Group for First Step. Finally, it provides early education about bleeding disorders and prevention.

How can I get involved?
For new parents and families who are interested in participating in First Step and for chapters/associations and HTCs interested in forming a First Step program and participating in Train-the-Trainer, please contact Alyssa Strauss, NHF Manager of Education, at (800) 42-HANDI ext. 3744 or astrauss@hemophilia.org.