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Teens in Transition

As individuals move from childhood into their teenage years, and from the teens into adulthood, they take on new roles and responsibilities. This is especially true of young people who have Niemann-Pick Disease (NPD). There are many resources available for these individuals to help them understand the changing roles they will fill, and to help parents and interested adults help them along this path. This process will take time, so it is best to start thinking about it and working on it as soon as the child starts asking questions and demonstrating responsible behaviors.

Three areas of importance in this process include 1) ownership of health and illness (including self-image and self-awareness), 2) relationships and independence, and 3) future planning and expectations of the individual’s role in the world. Teens may wish to consider the following questions in each of these areas (these are written from the perspective of a teen who has Niemann-Pick disease, type B, but can be applied to other Niemann-Pick types and other chronic medical conditions):

Ownership of self, health and illness

  1. How does it feel to have a chronic medical condition?
  2. Do you know enough about your condition to discuss it in basic terms with school personnel or others?
  3. Do you feel in charge when it comes to NPD, taking the lead in determining your care?
  4. Do you want to be more in charge when it comes to your own health care?
  5. Can you describe your day-to-day medical concerns yourself, such as how often your have pain, where it occurs, what are the triggers, who are your doctors? Do you ask questions of your parents or health care providers?
  6. Do you know what medications you take, and why?
  7. How do you think you are coping with your illness? What methods help? What doesn’t help?
  8. What feelings or emotions do you experience related to your condition?
  9. How have you learned about your condition?
  10. Do you write down your questions for your health care providers? Do you ask them?
  11. Do you sometimes feel that you are your illness?
  12. Do you sometimes feel like ignoring your illness?
  13. Can you ask for the help you need?
  14. Can you gently refuse unneeded assistance?

Relationships and Independence

  1. How do you deal with NPD when making new friends?
  2. Can you speak up for yourself or do you let others speak for you?
  3. Who do you see as your emotional support people?
  4. Do you have some one or a few folks with whom you can talk about anything?
  5. Do you have a group that you socialize with?
  6. Does NPB affect your school life?
  7. Can you talk about your feelings and illness with family, friends, others? What do you share? How does this feel?
  8. Do you have any concerns about your appearance? How do you explain the physical changes that are part of NPD to friends, acquaintances, others?
  9. Are your parents willing to let you be in charge? Do you talk about it?
  10. Do you like your primary care provider? Can you talk to him or her? Do you request time alone with your doctor?
  11. Do you find that your age influences how people react to you? If yes, how do you handle this?
  12. How do you communicate your needs to be your own person, to try new things, to explore?

Future Planning

  1. What do you think about your choices for the future?
  2. Are there any restrictions or limitations on what you want to do or can do?
  3. What activities do you participate in at school, church, etc.? How do you see these changing with time?
  4. Does your illness have an effect on your future goals?
  5. What are the chores you have at home? Would you like to have different responsibilities?
  6. How do you think about finances related to caring for yourself because of NPD?
  7. Have you done any financial planning to assure that you can afford the medical care you will need in the future.
  8. Are you aware of state or federal programs that might provide assistance?
  9. Do you know what to do in an emergency?
  10. What do you think you would do if you developed breathing problems?
  11. What would happen if you accidentally injured your spleen?
  12. How do you deal with the variability of the condition?
  13. Do you have or have you ever used an advocate?
  14. Do you keep a journal?

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