Self-Management and Independence

PRIMARY GOAL: Equip the adolescent with the skills necessary to manage their condition independently as they transition into adulthood.

Key Steps:

  • Development of a Self-Care Plan

  • ACTION: Create a personalized care plan that includes pain management techniques, hydration strategies, nutrition, exercise, and mental health support.

Example: Sarah creates a checklist with her counselor, including daily hydration goals (8 glasses of water), a pain management toolkit (heating pads and mild analgesics), and routine gentle exercises like yoga.

  • Training on Decision-Making

  • ACTION: Help adolescents understand the importance of making informed health decisions, especially when it comes to activities that might trigger SCD crises (e.g., overexertion, dehydration).

Example: Sarah reviews scenarios with her counselor, such as what to do if she feels fatigued during school. Together, they decide she will rest, hydrate, and call her doctor if symptoms worsen.

  • Emergency Planning

  • ACTION: Teach them how to create an emergency plan, including keeping an emergency health card with critical information about their condition, allergies, and medications

Example: Sarah carries an emergency ID card with the statement, “I have sickle cell disease. Contact Dr. Lee at [phone number].” It also lists her current medications and emergency contacts.

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