Transition from Teen to Adult with Sickle Cell

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What happens when your child becomes an adult? The pediatric programs across the country are flourishing, but the adult Sickle Cell programs for the most part are broken. Pediatric programs have outings, support groups, camps, and much more. Adult groups have support group meetings and a yearly retreat if you are lucky. Some pediatric patients continue seeing their pediatrician after the age of 18 because the adjustment is not made properly.

This has become my project: helping 16- to 21-year-olds make this transition. My name is April Farrell-Hasty. I am now 51 years old and I have Sickle Cell Disease. My transition from teen to adult care was not as difficult as most are, but I have seen very difficult transitions with very bad outcomes. You are preparing your child for independence and success as an adult patient with Sickle Cell Disease. Your teen will leave home eventually and you want them to be well prepared.

What makes the transition from a child with Sickle Cell
to an adult with Sickle Cell difficult?
  • The lack of support young adults receive from their support group, compared to what they received as a child.
  • Actually having to talk to the doctor when in crisis (their parents did this before).
  • Lack of decision-­‐making skills because their parents did this previously.
  • Lack of knowledge about their illness.
  • Parents who are pushy and unable to let go.
  • Physicians who will only talk to the parents and not the teen.
  • Not taking responsibility for their care (Young adults think if they feel good they don’t need to keep their doctor appointment or the specialist appointment.) This happens with college students and 20-­year-­olds.
  • Loss of insurance as they become an adult.
  • Lack of self-­‐confidence.
Going Away to College

If your teen is going away for college, go visit the city, the doctor, the support group, and 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. Be sure to talk with Student Health, Counseling, and all the professors. The problem is 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.

Tips for Parents

By April Farrell-­‐Hasty and Seema Mhatre

Being a teenager is difficult. They have to make decisions about smoking, sex, drug use, texting and driving. For teens with Sickle Cell, it becomes even more dangerous if they don’t take the responsibility for their own care.

  • Educate teens beginning at age 16 to 18, depending on the maturity level of the teen. If they are not mature enough at 16 you need to wait until they are mature. This varies with everyone.
  • When your teen takes interest in his or her health care, this is when you as a parent step back and allow your teen to talk to the pediatrician with you in the room. It is important that you do not talk to the doctor. This fosters independence in your teen, and trust in the doctor/patient relationship.
  • Get a referral from the pediatrician to the adult hematologist, and any other specialist needed. Have your child go to the appointment and as a parent step back.
  • Some support groups have transition programs like the one here in Florida. If you do not have a transition program, make sure your 18-­‐year-­‐old joins the adult support group and attends meetings regularly. (They will need to break the bond with the pediatric group. They can keep their friends, they just need to attend the adult meetings and let go of the pediatric meetings and outings.)
  • Teens should be given an adult mentor or sponsor to ask questions and get help in becoming independent. It is important that teens stand on their own and have confidence.
  • Teens should be introduced to the new staff, (doctors, nurses, support group, mentor).

Published in January 2014 newsletter. Written by April Farrell Hasty and Seema Mhatre