Bleeding Disorders and Stress Management
Linda Belling, RN, MS, CRRN
Linda Belling, RN, MS, CRRN, a clinical program coordinator at the Hemophilia Center of WNY in Buffalo, NY gives tips on managing stress.
Q: When it comes to managing hemophilia, how do you encourage your patients to keep a positive outlook?
A: It is best to stay involved with their Hemophilia Treatment Center (HTC) activities. Many HTCs offer training programs for new parents, self-infusion classes, support groups, etc. Participation in chapter activities such as family and children's camps, which offer opportunities to learn more about hemophilia and how others handle situations within a family, are encouraged. Holiday parties, family weekends, educational programs and many other chapter programs are all excellent ways to socialize and obtain support from others living with hemophilia.
The National Hemophilia Foundation (NHF) offers many programs for the family. Especially the annual meeting which is a three-day program offering educational sessions for families, ranging from basic hemophilia information to more specific information such as joint health, aging, pain management, women with bleeding disorders, etc. NHF also sponsors the National Youth Leadership Institute (NYLI), which offers young people (ages 18-25) who have bleeding disorders leadership opportunities and support. Other ways to be involved and keep a positive attitude might be participating in NHF Washington Days every spring. Opportunities to stay informed and involved are endless, and the more people who are involved the better.
Q: What tips do you share with your patients on limiting the stress associated with managing hemophilia?
A: Everyone has stress in his or her life, and the best thing a person can do for themselves is to recognize and address the stressors they have. It is easy to continue doing things the same way just because that is the way it has always been done. Most people with hemophilia have a social worker at their HTC that can work with them to possibly streamline stressors to make things easier or consider change.
Some tips to reduce stress related to hemophilia care include:
- Using electronic home infusion logs to decrease time spent on paper logs
- Talking with your nurse coordinator to make sure you understand your treatment plan
It can also be helpful to keep a bag of essential things you'd need for a trip to the emergency department. These can include a change of clothes, an emergency dose of factor, a written emergency care plan, and cash for parking. Being prepared can keep you from scrambling if an emergency arises.
Most importantly, to receive quality care, it is a team effort between you, your HTC and your family. Attend a comprehensive care clinic regularly, which provides an opportunity to evaluate hemophilia treatment plans, thus ensuring prompt care required to maintain your health.