Infusions are a significant and challenging part of life when you have a child with a bleeding disorder. However, there are ways for parents and caregivers to make infusions less stressful. Following the ABCs below can help ease the pain and anxiety of the procedure.
A stands for active role
With bleeding disorders treatment in children, let kids be involved in their own care and infusions. The right level of participation is guided by a child’s age and personality. But any involvement can help kids feel more empowered and less stressed out.
Preschoolers can help set up for their infusions by laying out the mat and gathering supplies. Older children can take on more complex tasks, such as reconstituting the factor and drawing it up into a syringe, with adult supervision. They also can push factor once the vein has been accessed.
In addition, parents can help kids feel more involved through open communication. Simply letting them know what is going to happen and explaining why infusing is good for them is the best approach. Let children share their concerns. Be a good listener, reflecting on what they are saying. But also remember to be a supportive coach, reminding them that they can do this and that you’re all on the same team.
B stands for breathing
If you’re giving the infusion treatment, take a moment to breathe deeply before you start gathering the supplies. Calm your mind and the environment using soft music or meditation techniques. Put yourself in the best frame of mind to be positive, composed and focused. Remember: You’re serving as a model to your child on how to approach infusions.
Similarly, start teaching toddlers to practice slow breathing and stretching to find their calm space. Allow your child to cuddle a favorite stuffed toy or watch an entertaining video.
Distraction can ease tension and take the mind off pain signals. Parents can talk children through the procedure, reassuring them they’re doing a great job at each step. A favorite cartoon playing on your tablet or a song on your smartphone can also draw attention away from the needle.
C stands for community
The bleeding disorders community offers helpful resources for parents and children. Many hemophilia treatment centers (HTCs) have child life specialists and social workers who can help parents and children prepare for infusions. The National Hemophilia Foundation (NHF) has videos about infusion and infusion tips on its Steps for Living website. Chapter events are another good place to seek practical advice from other moms and dads who may have more experience and practice.
For children 7 and older, bleeding disorders camp provides a supportive environment to learn how to self-infuse. Young campers see older camp counselors infusing, and HTC nurses teach them how.
Acknowledging and coping with the realities of infusion help parents and children forge ahead. With practice, you will find the tips and tricks that work for you.