Support Teens to Manage a Chronic Illness
Teens with chronic conditions are often models of resilience, because they have opportunities to witness and experience strength in the face of adversity. They learn about the things that really matter, including having a supportive family. These lessons last a lifetime. At the same time, young people living with a chronic illness face many challenges. For example, having to make complex medical and disease management decisions at a young age. Too often, adolescents with chronic diseases have so much going on that parents step in and make decisions for them. While intentions may be good, this can compromise development by taking away control and stifling their need for independence. And it may undermine their growing ability to make thoughtful decisions on their own. On the other hand, sometimes parents can become so frustrated that they let their teens have too much responsibility before they are ready.
Make Decisions Together
Whenever possible, parents should involve teens in important decisions and tasks related to illness management. And teens should assume gradual responsibility for doing these things on their own. It’s critical for their health and well-being.
Shared decisions increases their sense of control over their condition. Teens can begin to take ownership over their health. They get to practice important decision making skills. Their ability to overcome and bounce back from challenges is strengthened. Parents have a wonderful opportunity to nurture their teen’s resilience by supporting them to manage their chronic illness.
In this Q&A, I spoke with Dr. Victoria Miller, a clinical psychologist at the Children’s Hospital of Philadelphia and affiliate faculty at CPTC, to explore how parents can best support teens living with a chronic illness. Dr. Miller’s clinical practice focuses on counseling families that have a child living with cystic fibrosis. Her research focuses on how to be sure that children, adolescents, and parents are all best involved in decision making related to managing childhood chronic illnesses like diabetes or asthma.
Elyse Salek (ES): What are some key findings from your research related to the importance of parent-teen shared decision-making about chronic illnesses?
Victoria Miller (VM): Overall, as adolescents mature, their decision-making ability increases and communication between parents and teens is strengthened. This tells us that adolescents have the ability to be successful partners in the family decision-making process. We’ve learned this to be the case for youth with a range of illnesses.
For example, when parents were supportive of their teens’ independence and when families had more positive communication, youth were more involved in decision-making related to their diabetes care. Also, when young people with diabetes were more involved with the decision-making process, they were more likely to follow their treatment program. This is extremely important because it is common for older teens to have a hard time sticking to their medical plans, which can negatively impact their health.
When young people managing cystic fibrosis expressed an opinion and shared information during discussions about their illness, they were more likely to take responsibility for managing treatment on their own.
The key here is that young people were more likely to follow their treatment plans when they were involved in decision making. Being a part of the decision making process may increase their sense of control over their condition. This is especially important for adolescents, to prepare them to make independent, healthy choices in the future.
ES: What can parents do to support teens and help prepare them to successfully manage their illness?
VM: It can be challenging and emotional to have a child with a chronic illness. We can learn a lot from these families. They learn how to overcome adversity, advocate for the best healthcare possible, and build resilience. There are several ways that parents can support teens to cope with their illness. There are also strategies to help teens gradually take responsibility for managing their health. Here are seven to consider.
- Listen, Validate and Encourage Emotions. It is common for teens to express sadness or frustration about having a chronic illness. They may feel different from their peers. They may dislike having to interrupt what they’re doing for treatments. Perhaps they wonder what their future will be like. Or they feel sad about having to miss school or activities because of symptoms or being hospitalized. It is hard to see our children upset or worried. But it’s important to let them express feelings and respond in a supportive way. Try, “It seems like you are having a hard time. How can I help?” This keeps the lines of communication open. It will also make it more likely that your teen will come to you with problems or worries.
- Promote Independence. Give teens the independence required to make decisions about their illness when possible. Gradually increase this independence as they demonstrate good decision-making and mature choices. It’s important for teens with a chronic illness to have independence and control when appropriate since there is so much that is out of their control. Age and physical development should not be used as markers for when your teen is ready for increased decision-making independence. They may not fully represent the maturity of their thinking. Look for clues that your teen is ready to take on more responsibility. These include the ability to grasp future consequences from choices, understand pros and cons of different options, and think before doing.
- Be a Team. Giving teens independence for aspects of their treatment regimen doesn’t mean that your role is less important. It’s important to be a team when managing your teen’s chronic illness. Teens take better care of their chronic illness when their parents remain involved. However, who does what with respect to managing tasks will shift as your teen matures. This goes for tasks such as filling pill boxes, scheduling appointments or keeping track of supplies. It also goes for solving problems (e.g. what to do when the teen goes on a field trip), and making decisions (e.g. deciding whether or not to change medications or other aspects of the treatment regimen).
- Encourage Teens to Have a Voice. Issues related to chronic illness management impact teens directly, so it is important to involve them whenever possible. Support teens to have a voice when decisions come up regarding illness management. You might ask: “What do you think about this?”, “What concerns do you have?”, or “What do you think we should do?” For some teens, it may be more helpful to offer a few ideas and then ask what they think. Be open to them when they share their thoughts and opinions. During visits with health care providers, give them a chance to provide information, ask questions, and express concerns. It may be helpful for your teen to write down questions or concerns before clinic visits. Some teens may feel more comfortable communicating with providers when you are in the room with them. Others might be more comfortable expressing themselves if they are alone with the provider. Ask teens what they prefer. Always allow teens some private time with their clinicians. It gets them used to navigating health care on their own. It also gives them moments to express stressful feelings they might be sparing you from.
- Be Available. Be ready to provide guidance about chronic illness issues when teens ask for it. Although we sometimes assume teens want to make decisions completely on their own, they typically want parental guidance. And they are frustrated when they don’t receive the support they need. This is especially true for big decisions.
- Leave Room for Mistakes. It can be hard to let children with a chronic illness make mistakes. The stakes can be high with respect to short- or long-term health complications. However, it’s important not to overreact. Teens will make mistakes. We all do. This is an important way to learn about the consequences of decisions. And to learn what to do differently next time. Praise your teen for letting you know. Ask how you can help. Focus on what your teen is doing well. Help your teen see the strengths they are developing precisely because they are managing something difficult. However, step back in and provide oversight if your teen is consistently making poor decisions.
- Plan Ahead. We need to help our teens think ahead about situations in which managing the illness might be more difficult. For example, field trips, sleepovers, or starting a new job require planning ahead. Encourage them to problem-solve ahead of time about how treatments, medications or symptoms will be addressed in these situations. It is important to be flexible with the treatment regimen, so that teens can do the things that are important to them.
ES: Why should parents develop a decision-making partnership with their teens?
VM: Partnering throughout the decision-making process allows both parents and teens to work together towards an important common goal. This improves health-related outcomes for teens and strengthens family relationships. Offer teens emotional support while reviewing the pros and cons of different choices. This may help them feel more comfortable with the final decisions. As they contribute their thoughts and ideas, they are more likely to follow through with the tasks related to the decision. It may also encourage them to share in other areas moving forward. When teens are involved, they practice important decision-making skills in a safe environment. This practice promotes their confidence and can help their ability to make wise decisions in other areas of their lives.