Parents of children with a bleeding disorder may feel tethered to their child. It can be exhausting trying to explain all the details needed to care for them to another person. Because of this, some parents feel they can never leave their child’s side or that no one else can provide proper care for him or her. Lack of trust in others and feelings of being trapped can often take a toll, creating a significant amount of tension for families.
Transitioning the care of your child to another person (family member, babysitter, daycare, etc.) may cause stress if you’re not fully prepared. However, if you plan ahead and set an action plan in motion, a smooth and safe transition can take place, which may result in reduced stress!
Based on experiences from members of the bleeding disorders community, using these steps as a resource may help reduce stress during transition.
Steps for Transition
Assess needs
Review treatment plans and medical scenarios—train your caregiver
Understand when hovering is too much
Assess needs
If your child is recently diagnosed with a bleeding disorder, review with your HTC or clinician his or her potential needs. Some items to consider:
Does your child wear a helmet or other protective gear?
Is your child limited in his/her physical ability?
Are you able to treat your child before leaving him/her in the care of another or will the caregiver need to administer medication?
Are there restrictions to what your child can or cannot do while in care of another?
A family offers this example: “My daughter uses factor weekly, and I administer it prior to her being in the care of another. Although she doesn’t have physical limitations, when leaving her in the care of another, I do not want her wrestling, playing contact sports, etc. I still leave my caregiver with a treatment plan scenario just in case!”
Review Treatment Plans
Depending on your child’s severity, your treatment plan scenario may be adjusted.
Examples of what to include:
What to do in the case of a bloody nose
What to do if the child falls
What to do if the child hits their head
With each of these potential events, have a scenario planned, which almost always includes calling the parent and using RICE (Rest, Ice, Compress, and Elevate).
Parents of a more severely affected child may need to train their caregiver in the administration of factor if their dosing calls for more frequent treatment. In this case, ask a couple caregivers to consider going through the “self-infusion” protocol to learn how to administer your child’s medication.
Understand When Hovering Is Too Much
“What?! I’m a hemo-parent, there is no such thing as too much hovering!” some parents will say. While many parents may identify with this, there is such a thing as too much hovering. Over time, trust builds as you leave your child in the care of another. Though it may be tough at first, hopefully you will eventually feel you can release your anxieties and stop calling the sitter every half hour. After realizing your caregiver follows your instructions and protocols as well as checks-in with you regularly, your anxieties will likely lessen. When you’re able to control the hovering, your child may begin to understand his or her condition is manageable. Your child may also feel less stress and fear—what a wonderful thought that is!
A mom shares, “I’ll confess that my hovering is sporadic. I hover right after a major-medical incident, and I hover during transition (to elementary school, to self-infusion, to high school, and even to college).”
Though as concerned parents we may have an inclination to hover, it’s emotionally and mentally beneficial to parents and children to recognize the tendency and control the urge.
Home Infusion Steps and Helpful Tips
Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.
Patient Navigation Program
Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!
DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.
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