Your provider suggests a new medication or treatment protocol such as starting prophylaxis, having a port placed or removed, or starting a new treatment product that is very different than what you have previously used.
This is an exciting time in the bleeding disorder world in that there are many new products and treatment plans in development. It’s great to have choices, but it can often feel as though they are coming too fast! However, just because medical advances and new protocols are coming along quickly, it doesn’t mean you are forced to accept them all immediately.
It’s okay to take a deep breath and spend time thinking before making decisions. Use this time to research the new product or treatment, and learn all you can. Ask many questions! Ask your providers to help you contact others who have made this change and get their input. And after you’ve spent this time researching and learning, it is perfectly okay to take whatever time is needed to go over the pros and cons of the suggested treatment.
You may need to change hemophilia treatment centers due to relocation, or you’ve come to realize the one you’re using isn’t meeting your needs.
This change can be very nerve-wracking. Research the available hemophilia teams in your area. The CDC website has a great directory for HTCs. Find it online at https://www.cdc.gov/ncbddd/hemophilia/htc.html. Call the center(s), and ask questions. Ask others in your area about their experiences with particular HTCs.
Your first visit to a new HTC may seem strange. Keep in mind every center operates uniquely. The new team may do some things in a familiar way and others completely differently. Give the personnel at the new center time to prove themselves. Remind yourself that different isn’t necessarily bad, it’s just different.
Sometimes the new provider will suggest a completely new treatment plan for you or your child. It’s okay to ask questions and express concerns if the proposed plan feels uncomfortable to you. It’s also okay to not accept a proposed change and to ask for more time before making a decision. It’s okay to say, “I need some time to think this over. For now, I want to leave things as they are.”
One of the biggest changes is the transition for your child from pediatric to adult care. This happens at about 18-21 years old. This is not one change, but many, that should take place thoughtfully over time.
Some HTCs see children and adults in the same clinic setting with the same team members providing care to all patients. Some centers may have different doctors and nurses set up at different locations but share a physical therapist and social worker. Sometimes a young person transitioning into adulthood must go to a completely different center with all brand-new people to find the care appropriate for his or her age.
Whatever model is found in your center, please know that there are more differences to be found between pediatric care and adult care than just location or doctor. The philosophy of care changes with the move to an adult clinic. I once heard a speaker describe the difference as “Pediatric care is comfort care and adult care is cognitive care.” I believe we can bring comfort to the adult setting and cognitive care to the parents of pediatric patients.
The shift to adult care is one that parents can help prepare their child and direct them forward.
The term “cognitive care” is a phrase that denotes thinking and becoming knowledgeable about a subject and increased decision-making. In an adult HTC, your young adult will be expected to begin making decisions about his or her care. Prepare your child by helping him or her develop decision-making skills throughout their childhood.
Decision-making should be part of their lives from the earliest years. We can’t give a 3-year-old choice over bedtime or dinner time; however, we can offer 2 reasonable choices and invite the child to decide. As he or she ages, the choices should become more complex and more meaningful. The child learns to consider the options and make the choice that they desire. They also learn to live with their choices, as well as to adapt to the consequences of their choices if needed.
As your child grows, speak with him or her about their bleeding disorder. Do it in a positive and age-appropriate way. Having been a preschool teacher many years ago, I learned the maxim that explanations to children should contain 1 word for each year of the child’s life. That means that we should use 3-word descriptions for a 3-year-old and 4 words for a 4-year-old. It can take some thought to come up with short explanations, but it avoids having the child lose attentiveness as you talk. Of course, the teaching you do will contain more words the older the child becomes.
During the early years, your child should learn to say the name of their bleeding disorder and if it is mild, moderate, or severe. They should learn to name their treatment product. Your very young child will not be able to recite dose and frequency, but this can be added as the child matures. Your child should learn to inventory their factor and infusion supplies with you. A parent can make up a checklist for their child to use to determine what items are needed. The natural next step would be allowing your child to make the call to their pharmacy to order what they need (a parent should remain nearby or on the line with their child while they are learning this task).
Learning self-infusion is a huge achievement in the life of a child with a bleeding disorder, and it leads to large gains in self-care ability. If your child receives regular infusions to prevent bleeding (prophylaxis) or is infused on-demand, they should be involved in the infusion process. The youngest child can take their factor and supplies out and set up the infusion area. Later, they can learn to mix the product, then draw it up.
A big step in self-infusion is learning to identify a vein. Help your child become familiar with his/her veins. NEVER tell a child with a bleeding disorder that he or she has “no veins” or “terrible veins.” If veins are difficult to find or access, explain they will get bigger and easier to access as the child grows. It is okay to say, “Your veins are hiding today. We’ll keep looking to see where they’ve gone.”
Allowing your child to attend a bleeding disorders camp will have several benefits including learning he or she is not alone in having a bleeding disorder and in needing infusions. Your child will see other kids infusing and will learn from them. This is one time when peer pressure is a positive thing; many kids learn to infuse at camp because their friends are doing it! Self-confidence is gained when a child learns they can manage their infusions.
Talk to your child about what you have learned at a clinic visit or what you have researched about new treatment protocols and medications. Gradually, and as they are capable of handling it, the responsibility for their bleeding disorder care should be transferred to him or her. This will happen at different ages for different children. Use your judgment for these transitions, and keep an open mind. Consider reaching out to others who may have recently gone through this process.
Transitioning to adult medical care should not mean your young adult must handle everything entirely on his or her own. Make it clear you have many years of experience in managing a bleeding disorder (theirs), and you are still available to help and give advice. However, you have to trust in their ability to take over their medical care. Ask questions about how they are feeling and if they would like some input or suggestions from you, but do not criticize their handling of things. They will learn, sometimes through trial and error!
Helping your child as he or she matures through adolescence to adulthood can be stressful. This transition involves many adaptations, some unexpected, for both parents and child. You can use some of the tips in this article and apply them to other sudden adaptations. A really great resource for learning about and helping your child with healthcare transition is www.gottransition.org.
Don’t forget… ask for help! Trusted friends and family members as well as your hemophilia team can be a great resource to support you and your loved ones throughout all of life’s changes!
About Judy Kauffman RN, MS, CPNP
Judy Kauffman is an advanced nurse practitioner specializing in bleeding disorders. A former kindergarten teacher, she earned a Master’s in Nursing from Georgia State University and serves as Hemophilia Nurse Coordinator at UC Davis Hemostasis and Thrombosis Center in Sacramento, CA. Judy has also worked as a Pediatric Hematology/ Oncology Nurse at Emory University’s Children’s Healthcare of Atlanta, GA, as a Pediatric Nurse Practitioner at Children’s Mercy Hospital HTC in Kansas City, MO, and as a Clinical Support Specialist with a hemophilia pharmaceutical providing education to patients, families, medical providers, and 3rd party payors.
Judy has spoken nationally and internationally, served on committees with NHF and Maternal Child Health Bureau Nurse Working Group for Region 7 and the Great Plains Region, has been instrumental in developing research projects, and has written journal articles. Her passion is teaching others about bleeding disorders so they can live their best lives!
References
Clark, Val. “Different Types of Transitions in Child Development.” Twinkl.com, 2020, www.twinkl.com/blog/different-types-of-transitions-in-child-development.
Sandford, K. “Adjusting to Change / Life Transitions.” Lifehack, Lifehack, 12 Jan. 2021, www.lifehack.org/372463/why-you-need-adapt-change.
Leinwand, L. “Adjusting to Change / Life Transitions.” Therapy for Change, Therapist for Change and Life Transitions, GoodTherapy, 2020, www.goodtherapy.org/learn-about-therapy/issues/change.
Tasler, N. “How to Get Better at Dealing with Change.” Harvard Business Review, 5 Apr. 2017, hbr.org/2016/09/how-to-get-better-at-dealing-with-change.
Ginsburg, K. “The 7 C’s of Resilience.” Gold Coast Psychologists, 14 Dec. 2013, cbtprofessionals.com.au/the-7-cs-of-resilience/.
