Dealing With Caregiver Stress

Living with the job of managing a child's ongoing health condition can be stressful.

It is easy to find advice on how to raise a happy, well-adjusted child. But, raising a child with hemophilia and inhibitors is slightly different. And, it can be more stressful.

But, there are things you can do to reduce stress and worry.

Reducing Stress and Worry

It may not always be easy to stay calm and take deep breaths during infusions or bleeding episodes. But remember, kids will react to your actions — and reactions. If you are able to be calm under stress, chances are they'll be calmer, too.

Learn from your stress

  • If you can identify where stress is coming from, you can often find ways to avoid it next time
  • Slow down when you can
  • Prioritize, make the best plan you can, then let things go
  • Have open family talks to discuss bad events
  • Have family talks to laugh and celebrate good things that happen!

Identify emotional outlets

  • Exercise alone, with friends, or as part of a group
  • A long walk is a great way to release tension
  • Read your favorite type of novel
  • Join groups and clubs to help forget worries and meet new people
  • Volunteer for special activities and join celebrations that make you feel at ease or happy
  • Find local support groups that both you and your child can get involved with

Understand your child's situation and know what to expect

  • No one expects you to be a doctor — but everyone feels better being prepared
  • Learn about inhibitors to help you feel more in charge of your child's health
  • Get involved with hemophilia training programs, classes, and support groups
  • Formulate with your healthcare team a plan for emergencies, then relax. The planning has been done. Just follow the plan if an emergency does come up
  • Develop relationships you can rely on — friends, spouses, family, and others nearby — everyone needs the support of people they trust
  • Spend time with people who understand your situation
  • Don't avoid social activities because of your child's condition
  • Don't be afraid to talk about what's happening with you or your child. Friends are there to help — even when helping is just listening

Use tools to reduce the work and stress related to care

  • Use electronic logs and devices, if possible, to reduce the amount of time spent making notes on paper
  • Talk to your head nurse to learn about new tools and to make certain you understand your child's treatment plan

Also, the social worker on your hemophilia care team can help you reduce stress and worries.