Young people desire autonomy, but may not have the foresight or the aptitude to know how to reach their goals. The best way to start is to ask questions. I have learned there is rarely a consensus among the patient, parent/caregiver, and healthcare provider when discussing a teenager’s ability to do a task independently, such as remembering to take medications. Awareness of ability, or lack thereof, is crucial in order to create a plan towards independence.
There are three main components to transition of care: knowledge of health needs, being prepared, and taking charge. Listed below are skills needed to independently care for one’s own medical condition.
- Explaining one’s own diagnosis
- Understanding medications including indication, dose, potential side effects and surveillance
- Communicating with the healthcare team
- Refilling medications
- Making appointments
- Knowing when to call providers or seek emergent care
- Understanding patient rights
- Understanding/managing insurance
When we think of all the knowledge and skills necessary for self-advocacy and healthy behaviors, our first thought probably is to hide under the covers for a few days. Do not panic! Most caregivers acquired the skills and knowledge to navigate the healthcare system over time, and many times through trial and error. In the safety of the home, it is important to teach our teenagers and young adults how to be experts in their disease, communicate with others independently, and build foundational skills to care for themselves. Building confidence by mastering skills at a young age is expected to increase independence and decrease anxiety. By making smaller attainable goals and accomplishing them, the teenager will feel a sense of accomplishment over time, which will enable the teenager to feel empowered. It is important to remember that there will always be competing priorities; so working on these goals over time will help realize these skills.
- Talk about these topics with your teenager
- Encourage your teenager to pick 1-2 items that are the biggest priority to them
- Ask your teenager to make a plan to reach their goal
- Choose a time frame to reassess the goal and modify the plan as necessary
This is the second blog in the series on Transition of Care. Audrey Ayres, RN, BSN, MSCN is a clinical nurse at University of Texas Southwestern Department of Neuro-immunology. She was recently award the 2014 Excellence in Nursing Award by the Dallas magazine. Audrey provides care for adult and pediatric patients with Multiple Sclerosis, NMO, TM, AFM, ADEM and Limbic Encephalitis. She is also the primary nurse for the Pediatric Demyelinating Disease Clinic for Children’s Medical Center in Dallas, TX.