With families staying home during the COVID-19 pandemic, and the hecticness of everyday life toned down, many parents may be wondering if this is a good time for their child to learn to self-infuse. The short answer: It could be!
For some kids with hemophilia and other bleeding disorders, learning to self-infuse clotting factor is an important milestone. Taking control of this key aspect of their healthcare means more independence for them, and comfort for caregivers that a child can manage infusions without needing an adult’s watchful eye.
While there is no definitive age when a child should be ready to self-infuse, most experts agree that beginning at about 9 is a good target. Some kids will be eager to take the responsibility on and others will be more reluctant (parents shouldn’t push self-infusion on a wary child). Even if a kid is excited, children and their parents should discuss the topic with the healthcare team at their hemophilia treatment center (HTC). Parents shouldn’t forge ahead with teaching self-infusion without agreement from their child’s HTC nurse, social worker and hematologist.
But while having more opportunity to help a child learn self-infusion is a possible silver lining of these times, parents still need to understand if a kid is ready to learn and take this crucial step toward more independence.
The following are some clues that your kid may be prepared:
Is involved with infusions now
A good first sign is if he or she is already doing things like helping fetch and arrange the equipment, cleaning the skin, mixing the factor, helping push the infusion and marking the infusion in a log.
Knows all of the supplies and steps
Can he or she name all the supplies needed for an infusion (i.e., syringe, factor, gloves, tourniquet, sharps container, cotton swabs)?
Has a job or chore at home that he or she manages without help
This is evidence that your kid can manage a repeating task without you having to bug him or her to get it done.
Knows the name and severity of their bleeding disorder, the name(s) of their medication(s), the dose and when to take it
Knowing this information is critical not only to ensure proper adherence to treatment but also if your child is away from home, say, and needs assistance from unfamiliar medical personnel.
Understands the treatment product’s label
For safety, a kid needs to be able to find, read and comprehend a medicine’s name, dose and expiration date.
Mixes factor correctly on his or her own
They may have helped you do it many times, but it’s crucial to know that a child can mix the factor correctly on his or her own to ensure the medicine works as it should.
Generally able to find a vein easily
Kids should be able to identify what makes a vein a good site for an infusion.
Stays calm during an entire infusion
A relaxed demeanor and the ability to remain still are essential to a successful infusion.
Has demonstrated he or she can use a calendar or other logging tool
Kids will need to keep track of their infusions to accurately know when their next one is supposed to be.
Can troubleshoot if something goes wrong
If unexpected issues or problems arise during an infusion, you should be confident he or she will react quickly and calmly to address the situation.
Likes to set goals and tackle new challenges
Learning to self-infuse is a process. It won’t happen overnight or in one go-round. With a parent or other caregiver’s help, your child can set achievable goals and stay on track.
More information for adults and kids on self-infusion is available at the National Hemophilia Foundation’s Steps for Living website.