How to Prepare Children With Sickle Cell Disease for Adulthood
Columnist Mary Shaniqua shares tips for young patients and their parents
When children become adults, they must transition from pediatric to adult healthcare services. Transition programs are particularly important for helping patients with chronic conditions navigate this switch. A good program ensures patients are informed about any changes to their care and treatment, and I believe it should also help them gain independence as adults.
When I was young, transition programs were uncommon here in the U.K. I was thrown into adult services at age 16 when a severe sickle cell crisis required me to be hospitalized. It had been 10 years since I’d been admitted to a hospital, so you can imagine my shock.
I remember being asked to share basic information about my health, such as my usual base hemoglobin level, my allergies, my daily medications, and my care plan for sickle cell disease. Now that I’m in my early 30s, I can answer these questions easily, but at the time, I had no idea how to respond.
A few years after that hospitalization, I moved away from home to attend college. This meant I was responsible for sorting out my prescriptions, complying with my treatment plan, and attending all my medical appointments. I had to be wise and make good health decisions. I also needed to be knowledgeable about my condition so that I could educate others and advocate for my needs.
I am an avid supporter of good transition programs because I didn’t have one. It would have been extremely helpful as I learned to manage my own care.
Over the years, I’ve helped facilitate transition workshops for young patients and their parents. Given my experience, I’d like to offer a few tips to help children with sickle cell, and their parents, prepare for adulthood.
I strongly encourage parents and medical professionals to educate children about their chronic conditions. I recommend beginning to talk with them around the time they become a teenager, focusing on what their baseline looks like, the medications they take, any allergies they have, and what’s involved in their care plan. This will give them a few years to learn everything before they transition into adult care.
Unfortunately, apart from hematologists, many specialists don’t understand sickle cell disease. As such, many sickle cell patients face situations where they must self-advocate to receive adequate care. This can be challenging while enduring a crisis.
Until sickle cell is better taught in medical and nursing schools, this burden on sickle cell patients remains. I highly recommend teaching the child how to advocate for themselves politely and patiently. This is vital, because once frustration comes into play and is compounded by crisis pain, it can be nearly impossible to continue being polite.
I have found that I’m a more effective self-advocate when I’m not as emotionally charged. But I am years into this journey and still find it difficult. You can train your child to be an effective advocate by role-playing or even practicing with hospital staff.
Parents, in preparing your children for adulthood, be sure to talk with them about money management and the financial aspects of healthcare. I also encourage you to discuss navigating the healthcare system (how to find a general practitioner and renew prescriptions, for example) and managing any emergencies that may arise.
When I had my first sickle cell crisis at college, I called my mum instead of the ambulance because I didn’t yet know how to determine if a crisis required a trip to the emergency room.
Make good health decisions
Many young adults may dabble in risky activities, such as drinking alcohol, experimenting with recreational drugs, or having casual sex. However, for someone with a chronic condition like sickle cell disease, the risks involved can be much greater. It’s important to have the necessary conversations with your child about how to respond to peer pressure. Poor decisions could be detrimental to their health.
Personally, I avoid such activities altogether, but I understand this is not the route everyone wishes to take. I strongly advise young adults to exercise their best judgment at all times.
What tips would you share with young sickle cell patients who are transitioning into adulthood? Please comment below.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.
I wanted to highlight an effort I am currently working on that ties into this column. As the state's first and only network of adult specialized Sickle Cell Disease clinics, Networking California for Sickle Cell Care NCSCC is finally reversing decades of neglect by providing comprehensive and compassionate care to Californian adults living with SCD, as well as assistance transitioning from pediatric to adult care. In addition, NCSCC provides funding to increase surveillance, data collection, and research to help address SCD health care needs and gaps, while also providing policy makers the data to be able to fund further initiatives. If you have any further questions or would like to know more about the Network, please contact me. Thank you!