How to make the transition go smoothly
Depending on the maturity level of the teen, you should start educating them about the transition between the ages of 16-18.
This varies with everyone, and once again, it just depends on how mature your youth is.
As a parent, you can note this when your teen takes an interest in their health care, and actually starts asking questions while in the hospital. When you take your teen to the pediatrician for the next doctor visit, step back, and allow your teen to ask the questions, direct the flow of the conversation with the doctor. This is a very good first step, because they have the comfort of knowing that you are present, yet the independence of stretching their wings.
This session is important to nurture and develop the patient-doctor relationship. It is very important during this session that you do not talk to the doctor except in greeting. Butting in and taking over the conversation shows a lack of confidence in your teen to manage affairs, and this can directly affect their transition.
Get a referral from the pediatrician to the adult hematologist and any other specialist you need. Have your child go to the appointment and as a parent you must step back. Some support groups have transition programs like the one here in Florida I am helping to create. If you don’t have a transition program make sure your 18 year old joins the adult support group, and attends meetings regularly. They need to break the bonds with the pediatric support group and start attending adult meetings and functions. They can keep their friends, they just need to attend the adult meetings, and let go of the pediatric meetings and outings. Create a bridge group for 16-17 year olds to prepare them for the transition to the adult group.
The teen will be given an adult mentor or sponsor to ask questions and get help in becoming independent. Remember, you as a parent has to step back and only be there for support. As a result, and adult mentor will help them learn how to balance appointments, doctors etc. without your influence. This helps to develop their confidence and independence.
If the teen can be introduced to the new staff, (doctors, nurses, support group, mentor) this is important to the success of the transition. Being a teenager is difficult they have to make decisions about smoking, sex, drug use, texting and driving. For teens with sickle cell it’s even more dangerous if they don’t take responsibility for their care.
If your teen is going away for college go visit the city the doctor, the support group, the hospital that specializes in sickle cell in that area. More importantly talk to the college and inform them of the problems your student faces. Make sure your young adult registers at the Student Health (or Disability Support) office to help them if they do fall sick while in school. This office usually sends out a memo to notify instructors and professors about their limitations every quarter.
One of the greatest problems is that most young adults won’t go to the doctor for regular appointments if they are not in crisis. Regular appointments need to be kept, the patient needs to be monitored, and young adults don’t value this or understand why they are going if they feel good. You might have to send friendly reminders for their doctor’s appointments for a while until they start initiating and attending appointments on their own.
Questions to Ask the doctor
With these questions we want to avoid the confusion and anger. Education is the key to having a successful transition from teen to adult sickle cell patient. It is better to have the doctor write all the answers down, so that your youth can refer to it whenever they need to.
- What was the lowest my H & H was when I was hospitalized last?
- At what H&H I’m I usually transfused?
- What was my H & H when I was doing well? What is my average? Suggestion: Start keeping a copy of the two most recent lab work in a file to acquaint the teen with their numbers.
- How to describe pain? This needs to be addressed, some pamphlets have been created for this.
- What pain medicines do you take in what dosage you take when hospitalized? (IM subq, intravenous) ask the nurse before she gives it to you. This can be kept on your cellular phone and updated when medicines change, this is important if you travel or are away at school.
- Any allergies to medications, and the reactions you have to those medicines (hives, itching, etc)
- Have a list of all your current medications and dosage of medicine you use at home. Along with your stats, and surgeries and special medical procedures on your cell phone. Keep the list updated when your medications or health changes.
- List of your questions for the doctor. Have them ready before to each visit.
- Understanding your Iron level. What your numbers are? What is the normal ranges? Why is this important? To prevent iron overload.
- Transfusions: How and when to get them
- How many transfusions you have had in your lifetime.
- What are symptoms of a stroke and what do I do?
- When I’m in the hospital, what are my rights?
Theses are just the first few steps into fostering independence and easing the transition for you teen into a young adult. For them to successful mature into independent sickle cell warriors, they must take responsibility for their own health and be allowed to make decisions for themselves. It is the parents job to guide this process to fruition, be there for support, but know when to step back and let go.