Learning Home Therapy

Who teaches home therapy?

The ideal person to train parents and children in home therapy is the nurse on the hemophilia care team.  The nurse can do more than just teach the steps involved.  The nurse knows about all aspects of treating a bleeding disorder.  The HTC will want the hemophilia nurse to train anyone who may be called upon to help give factor concentrate.

Parents who have been trained sometimes want to be the ones who teach their children to self-infuse.  It is still wise to have the hemophilia nurse review the basics with the child and watch him practice.

Who can do home therapy?

The decision to begin home therapy depends on many things.  Parents can begin infusing a child at home when he is young.  However, they must wait until the child is mature enough to cooperate and has veins that are easy to find.

The age at which a child is ready to begin to give himself factor will vary, too.  Waiting until he is a teenager can be a problem.  Teens sometimes do not want to start home treatment.  The best age to begin self-infusing is probably about eight or nine.  A parent can begin getting the child involved at a much younger age.  The parent can have the child arrange the equipment, clean his skin, roll the bottle to mix the factor, and write down the infusion on the treatment calendar.  Taking an active role often helps to relax the child.

Home therapy may not be for everyone.  The hemophilia doctor is the person who gives final approval to starting a home therapy program.  He or she may find that the patient is not ready.  Perhaps the patient lacks the skills or maturity he needs.  It may not be a good idea for a person with mild hemophilia to learn home therapy.  He seldom uses factor and does not have a chance to practice and maintain the needed skills.

People with problems such as severe depression, drug abuse, or alcoholism are unlikely to be able to manage home therapy.  Families whose relationships are troubled may have problems with home therapy as well.  Parents can become overprotective when they begin treating a child.  On the other hand, the child can become too dependent on the parents.

Checklist for deciding to learn home therapy

If the person with a bleeding disorder can answer “yes” to these questions, he or she may be ready to begin learning home therapy.  Parents will need to answer for themselves and their children.

Does the person with hemophilia have:

• Willingness
  • to assume the responsibility?
  • to learn the skills involved?
  • to accept the hemophilia team’s supervision and long-term follow-up?
  • to keep good treatment records?
• Physical ease
  • to sit still long enough?
  • to cooperate quietly?
  • to find veins to inject?
• Emotional strength
  • to take on the responsibility of home care?
  • to perform the steps involved?
• Good judgment
  • about when to take factor?
  • about getting medical help when needed?
• Knowledge
  • of the basic facts about his or her bleeding disorder?
  • of how much factor to take?
  • of how to infuse?
  • of risks and possible problems of home therapy?
• Necessary skills
  • to mix the factor?
  • to stick the vein with the needle?
  • to take care of veins?
  • to keep the equipment sterile (free of germs)?
• A place
  • to do the infusion (clean, well-lit area)?
  • to store equipment safely?
  • to store factor?
  • to dispose of equipment safely?
• Resources
  • to get factor?
  • to pay for factor or for insurance?

Note: Hemophilia of Georgia provides factor for Georgia residents who are unable to pay or get insurance.  Our nurses can train people to infuse factor.