Why Decision-Making Involvement Is Essential for Children with Chronic Disease

Victoria Miller, PhD, is a psychologist at Children’s Hospital of Philadelphia who examines how communication between parents and children impacts decision-making in health-related choices and their outcomes. Dr. Miller knows that allowing teens to be involved in decisions that affect their health can positively impact teens and their parents. But what happens when a teen is dealing with a chronic illness? We spoke with Dr. Miller about the benefits of involving a teen with chronic disease in the healthcare decision-making process, the positive impact on the parent-teen relationship, and how parents can help encourage successful choices when it comes to including their teens.  

Eden Pontz: Can you explain what decision-making involvement (DMI) means and why it’s so important for families with children dealing with a chronic condition?  

Victoria Miller: Decision-making involvement refers to the various ways children can be involved in decision-making. It’s a concept that includes the child’s active participation and the adult’s attempts to help the child be involved. The concept focuses on interactions and communication related to decision-making, not who makes the decision in the end. 

Teen involvement in decision-making is especially important for teens with a chronic illness. That’s because they may have to make complex decisions about their health. Some are faced with these decisions everyday. Learning to make these decisions effectively can be a milestone in learning to take more responsibility for your health. When teens are encouraged to be partners and contributors to decision-making about their chronic illness, they are more comfortable with decisions that are made. They are also more likely to follow through with those decisions. But when they are left out of important decisions, they may feel undervalued and miss out on the opportunity to practice and learn how to make good decisions. When parents and teens work together to make decisions, they do so towards an important common goal.

EP: There are many benefits to involving teens in decision-making. Tell us about them and why they benefit a child experiencing chronic disease. 

VM: When parents involve their teens in decision-making, teens learn that their voice is important. This helps give them a sense of control over their condition. Involving teens gives them the opportunity to observe and practice decision-making while still getting support from parents. We’ve also found that when teens are more involved in decisions, they feel more confident about their illness and are better about sticking to their treatment plan. This is key because following treatment plans is critical for optimal health in teens with chronic conditions.

EP: What are some ways parents can help their children be involved in this process in a meaningful way? 

VM: There are a few specific strategies that I suggest parents use to help their teens be involved in decision-making about their chronic illness. But each family is different so it’s important for parents to use strategies that feel right for them. 

• Ask for your teen’s ideas and opinions. When challenges come up, ask your teen if they have ideas for what to do. If a decision is needed, like a medication adjustment, ask for your teen’s opinion. You can ask: “What do you think about this?” or “What concerns do you have?” or “What do you think we should do?”. It might be more helpful for some teens if you  offer a few ideas and then ask what they think. Be open to them when they express their opinions. Even for major decisions for which you will have the ‘final say,’ teens can still have a voice. When teens feel they have a say, they consider the decision-making process more fair. Overall, asking for your teen’s input shows them that you value their perspective and their opinion is important.
• Identify areas where your teen can make decisions on their own. It’s essential for teens with a chronic illness to have independence when appropriate because there is so much that is out of their control when they have a chronic illness. Look for clues that your teen is ready to make more decisions on their own, like the ability to grasp future consequences from choices, understand the pros and cons of different options, and think before acting.
• Be a role model for good decision-making. When making decisions for yourself or thinking through decisions related to your teen’s health, talk with your teen about your thought process. Discuss the pros and cons you are considering and how you weigh them. If a decision is tough, describe how you will cope with it, like talking to a trusted friend or giving yourself more time to make the decision.

EP: What can parents do to help keep the lines of communication open when making decisions about the Decision Making Involvement process? 

VM: My number one recommendation is to focus on what your teen is doing well with managing their chronic illness. When we confirm with our teens what they are doing well, they grow more confident. On the other hand, when teens feel criticized or shamed, they shut down and are less likely to go to their parents for support and guidance about decisions and challenges.

Another way to keep the lines of communication open is to validate your teen’s emotions. It is common for teens to express sadness or frustration about having a chronic illness. It can be hard to feel different from peers or to have to interrupt what they’re doing to do treatments or manage symptoms. But it’s important to let them express these feelings and respond in a supportive way. Try, “It seems like you are having a hard time. How can I help?” Doing this can make it more likely that they will come to you when they have challenges.

The last thing I’ll suggest here is to be ready to provide guidance and support for decision-making when your teen asks for it. But consider waiting until they ask. That’s because most teens don’t like feeling controlled. So, they may reject your suggestions if you offer them unprompted. Rest assured, we know that teens still value and need parental guidance, even as they are becoming more independent with their chronic illness management. Teens get frustrated when they don’t receive the support they need, especially regarding big decisions. 

EP: What challenges might come up when involving your youth in the decision-making process, and how can you help manage them? 

VM: One challenge is that teens might not want to participate in decision making for a variety of reasons. This can be frustrating for parents trying to encourage their teen’s independence. But when your teen is not very engaged in decision-making, remember you have a long term goal: to equip them with the tools to make independent decisions in the future so that they can be healthy, successful adults. When you encourage your teen to be involved in making decisions, you are still respecting their developing autonomy and setting the expectations for their participation over the long term.  

Another challenge is that it can be hard to let teens with a chronic illness make mistakes because the stakes can be high. But it is important not to overreact. We all make mistakes. They are an important way to learn the consequences of different decisions. When teens make mistakes, they learn what to do differently next time. Praise your teen when they let you know about a mistake they made. Ask how you can help. If your teen consistently makes poor decisions, this is a sign that your teen needs you to step back in and provide more oversight.

EP: How does the child benefit from a parent or caregiver’s continued involvement? 

VM: Your role is still vital, even as your teen becomes more independent in making decisions. Parents are a source of support for teens – both logistically and emotionally — as they navigate decision-making and overcome challenges to illness management. Most teens want input from parents about health-related decisions, even as they get older. You can provide teens with information about decisions to be made, assist with identifying the pros and cons of different decisions, and provide emotional support as your teen navigates hard decisions. Rather than leading decision-making, parents can be a sounding board for teens as they gain increasing independence in making choices about their health and chronic illness management. 

Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under Award Number R01NR020005. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.