If you have a child with a bleeding disorder, the relationship that your family forms with a hemophilia treatment center (HTC) nurse is paramount.
“They become your lifeline, especially if you’ve started with them within the first few years of your child’s life,” says Becca Robbins. The mother of two sons with hemophilia has had three nurses in the past 10 years. “They see you at your worst, understand your frustration, and they give you compassion and wisdom. The perfect combination of what parents need.”
When an HTC nurse moves on—because of retirement, promotion, maternity leave or countless other reasons—it can be tough for the families who rely on that nurse. Following these steps can make the transition to a new nurse less overwhelming for everyone involved.
1. Have confidence in the new nurse.
While your nurse will be different, his or her training will probably be similar to your former nurse’s training. Partners in Bleeding Disorders Education provides comprehensive, broad-based education to support the treatment of bleeding and clotting disorders in the US HTC network, at no cost to nurses. “Every nurse that comes through our program learns how an HTC should operate and their role within it, which should provide some comfort that your new nurse has been trained and taught in a similar way to your former nurse,” says Natalie Duncan, MPH, partners program coordinator at the Indiana Hemophilia & Thrombosis Center.
2. Prepare early.
As soon as you’re assigned a new nurse, arrange a meeting—ideally with the former nurse as well. “That’s a great opportunity to pass the baton,” says Duncan. Come armed with a list of questions and concerns. Be as honest as possible about everything you need to know so you can leave the first meeting with assurance.
3. Be open about your concerns.
“Be sad at saying goodbye, but recognize why you’re really frightened,” says Michelle Witkop, DNP, FNP-BC, head of research for the National Hemophilia Foundation. “Sometimes people feel deserted, and that isn’t true. Transition isn’t desertion. But it can feel that way.” Talk it out with your former nurse. “When I left my job as an HTC provider after 16 years, there were plenty of tears on both sides,” says Witkop. “But I told the nurse who was taking over that he was now these patients’ guardian. He needed to listen, validate their concerns and protect them and their interests.”
4. Go with the flow.
Your new nurse may do things differently than your old one did. That’s not a bad thing. “It may be an opportunity for growth on your part also,” says Witkop. “Try to be positive. Introduce yourself, spend time sharing your story and know the new person won’t always remember each detail. They will need to hear it a few times to assimilate it. That’s OK.”
5. Realize that things take time.
Becca Robbins has had all good experiences with her HTC nurses. “Just hang in there,” she says. “Like any new relationship, it takes time. You will grow to love the new nurse just as much.”