To manage a child’s bleeding disorder, families rely on helpful habits and routines. Maybe one parent is consistently better at finding a vein for infusions, while the other is the go-to for comfort at times of a painful bleed. However, changes to family dynamics due to separation or divorce, or newer partners moving in together, can destabilize solid systems that bring comfort to both parents and kids. If not addressed, these changes have the potential to disrupt adherence to treatment plans and thus a child’s overall health.
If your family is facing significant changes, the following can help you cope:
Be as upfront with kids as possible
Children are affected by their parents’ moods more than we may think. They pick up on and internalize stress and anxiety, as well as positive emotions. If you and your partner are breaking up, or if you have been happily dating someone and are considering moving in together, trying to hide these parts of your life from your kids can distract from the usual care routine. These issues are complicated, and how much detail you share will depend on a child’s maturity. But in general, talking with your child about the emotions of a new situation, and showing that as a parent you are doing your best to cope with them, can make your child feel more secure.
Meet with your hemophilia treatment center (HTC) social worker
Whatever challenge you’re confronting, connecting with an HTC social worker is a good place to start getting assistance because he or she understands the lives of families managing bleeding disorders. As a neutral advisor, the social worker can offer valuable, unbiased suggestions if, for example, newly single parents are struggling to balance caring for themselves and for their kids. And if additional regular counseling would be beneficial, the social worker can refer you or your child to an outside therapist .
Join a support group
Speaking with other parents who are in a similar position can bring valuable perspective and insights into your own situation. Many HTCs and National Hemophilia Foundation chapters host parenting support groups. If your child is struggling to adjust, chapter events are a good way for all of you to feel connected to a larger community of support.
Develop a plan
As life shifts, it’s key to be organized so your child’s care remains consistent. If your child will split time between two homes after a divorce, parents need to recognize and respect that there may be some differences in how they approach a child’s care. Your HTC nurse and social worker can help develop a mutually agreeable plan for questions such as how to treat bleeds and when to call the HTC or go to the hospital.
Similarly, a new partner joining your family may want to help with care but may also be overwhelmed by all the new information. In addition to attending HTC and chapter educational programs to learn more about bleeding disorders, this partner can be incorporated into a parenting plan that includes tasks such as taking a child to appointments and ordering treatment supplies. Kids should be encouraged to contribute to this family plan for managing their condition.