Here are some general guidelines from clinicians who work with children and teens with sickle cell disease and chronic pain.
As you read through the guidelines, keep in mind that they can be used very differently from one family to another. Think about how you might use them in your own family.
- Encourage positive pain coping behaviours as well as independent management of pain. If your teen tells you they are in pain, encourage them to use a pain management strategy such as relaxation or belly breathing. A great parental response to a pain complaint is, “What do you think you can do right now to help your pain?”
- Encourage normal activity after acute pain crises, including attending school, completing daily chores and responsibilities, and doing regular extracurricular activities. Do not remove responsibilities because of pain, but help your teen identify how to continue the important activities in their daily life.
- Be careful not to give excessive reinforcers, including special privileges or treats, when your teen complains of pain. Instead, focus on encouraging positive coping behaviours.
- If your teen misses school or other important responsibilities because of pain, they should have a low-key, quiet day, free of any reinforcing activities. Remember the goal is for your teen to want to engage in positive “wellness behaviours” that bring them out of the house.
- Remove the focus on pain and sickle cell disease. Do not ask your teen too many questions about whether they have pain or how much it hurts. Let your teen bring it up to you. Trust that your teen will come to you for help if needed.
- Reduce dependence on pain medicines and use them only as prescribed. Do not only offer medication for pain when your teen complains. Ask your teen what other strategies they can use to manage pain.