Children Parental Stress
There is no shortage of advice on how to raise a child to become a happy, well-adjusted adult. But is this advice useful for parenting a child with hemophilia? What are some of the special issues that families face when dealing with a lifetime health condition? One challenge that all parents of children with hemophilia will face is stress. We brought some questions about stress to Morgan Major, a mother of three boys, two of whom have severe hemophilia A, and to Linda Belling, RN, MS, CRRN, a clinical program coordinator at the Hemophilia Center of Western New York in Buffalo, NY. Here is what they offered:
Morgan Major on Parental Stress
Q: What tips do you have for other families on how to manage stress?
A: My husband and I have always tried to stay calm and take a deep breath during infusions and bleeds, or anything pertaining to hemophilia. We have noticed over 13 years that our kids feed off of our actions. Reacting calmly at that stressful moment hopefully will teach them how to cope with their stressful situations in life and with their hemophilia. Sometimes we need to step back, reevaluate, and determine what caused the stress in the first place. Learn from it and attempt to avoid history repeating itself the next time something similar occurs. It could be as easy as just slowing down a little in our busy lives and prioritizing. We strive to handle the issue the best way we know how and entrust the rest to prayer.
Q:How does your family reduce stress?
A: Everyone has stress in their lives, and having an issue like hemophilia can make it more stressful; for example, going to the ER on Christmas Day to get an infusion because one of our boys fell playing with his new toy. We don’t want our kids to focus exclusively on their hemophilia; we want to enjoy life with them and do fun things together. As a family of all black belts, we feel that it is important to clear your mind, leave all your stress of life at home, and focus on our non-contact Tae Kwon Do.*
Another thing in the Major household, we have a lot of what we call “pillow talks.” These talks allow us to open up, discuss, and sometimes even laugh about the good and the bad events of our day. We can’t change the hemophilia, but what we can change is the way we react to situations that may cause stress.
Linda Belling, RN, MS, CRRN on Parental 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, is 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 bleeding disorders 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 and personalize hemophilia treatment plans, thus ensuring prompt care required to maintain or improve your health status.
*Note:Not all activities are appropriate for all people. Be sure to consult your physician or treatment center before beginning any exercise program or participating in sporting activities.