Successful Transitions: Preparing Kids with CF for the Real World
by Lisa C. Greene and Foster W. Cline, MD

Introduction: What is Transition and Why Does it Matter to My Child?

A critical issue for all parents of children with cystic fibrosis to think about is "transition." As parents of a young child with CF, you might be thinking: "I don't need to read about transition. Transition is years away when my child is about to turn 18." This can't be further from the truth. CF medical professionals and child development experts agree that transition planning should start at diagnosis.  

So what exactly is transition? The word "transition," as used in the medical community, is defined by the American Academy of Pediatrics as ‘‘the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care system.’’

Various medical systems define the age of transition differently; some are age 18, others age 21 or even longer. There are many variables to be considered including health status and developmental ability. Check with your medical team about this  important information. Why? Because wise parents focus on preparing their child for medical independence well in advance of the actual shift into the adult medical system.

Even prepared parents and young adults express shock at how different the two systems are. It's like jumping into a cold swimming pool. You might be mentally ready for cold water because you dipped in your big toe but when you jump in, there's still a shock to your system. Some people appreciate the shock and call it "invigorating" while others can't wait to jump back out at the first possible chance!

Here are some comments from adults with cystic fibrosis about their experiences with transitioning from pediatrics to adult-oriented medical care:

I had a hard time at first transitioning from the pediatric to the adult clinic because I find it really difficult to adapt to new doctors. It didn't last long before I felt comfortable with my adult doctor because naturally, there are more adult health concerns that need to be discussed and somehow it's just easier talking to an "adult" doctor about "adult" problems. The one main difference I noticed from the pediatric clinic is that the doctor I switched to is more blunt, to the point, and speaks directly to me. One of my parents has always come with me to clinic but once I was transitioned, my parents stopped coming in to see the doctor with me. They would still take me to clinic but they just stay in the waiting room. When they were in the room with me, it seemed as though the doctors forget I'm there. They would talk about me to my parents, I never felt like I was being addressed. They way I'm spoken to in the adult clinic is very different... because apparently they think once you're 21, you don't want to talk about your "poops" any more.  - female age 21

In my personal opinion, the courtesy with the patients changes. They assume that because people are older, they can handle the info that's given to them with no problem, which I agree to a certain extent; but what they're forgetting is normally it's bad news and is still a lot to take in for some people. MY advice... stay a kid.  - male age 25

Was I ready? I think as far as being in control of my own heath I was. I was 19 when I transitioned to the adult clinic. I was pretty independent; I was living on my own, engaged, going to college, etc. But the reality of insurance and bills still wasn't there. I learned pretty quickly how to manage the medical bills and how to understand insurance. The pipe dream of going to college full time and working part time was just that. There would have been no way to afford insurance working only part time. How is it different? I think I have to be more aware of my own health and speak up when something is not right. - female age 23

The transition from the Ped's to the adult clinic is all going to depend on the medical team and the patient. I think I'm healthier than most CFers so I was less dependent on the Ped's clinic which really helped with my transition. I went to school with another CFer and CF had a major impact on her. She actually passed away about a year ago. I know that she had a very difficult time transitioning from the ped's to adult. I think it is all very situational. - male age 25

I transitioned at 16. My pediatricians had prepared me for the transition. They always talked directly to me. At the age of 12, I would go to the exam room by myself and mom would stay in the waiting room. They wanted me to learn how to interact with doctors and advocate for myself. I think they did a great job.  Honestly, when you are an adult, you need to see a doctor who is used to dealing with issues that adults face. - female age 40

This small sample demonstrates that there can be a wide variety of transition experiences. Certainly individual attitudes play a large role in outcomes but a positive transition experience has a big impact on how young adults adapt to dealing with their healthcare.

Current research shows that an organized, methodical approach to transition is crucial. A. Kennedy et al. states: "Increasing evidence shows that adverse health consequences occur when inadequate transition arrangements are in place. Poor transition processes are increasingly recognized to have a significantly negative effect on morbidity and mortality in young adults."

Research also shows that starting the transition process early is essential. Unfortunately, this isn't happening in a majority of cases (in the cystic fibrosis community). Research by McLaughlin et al. in 2008 of 87% of all US CFF-accredited programs shows that:

"Although transfer of care in CF occurs at a median age of 19 years, initial discussion of transition does not occur until a median age of 17 years, leaving a limited amount of time for patients, families, and care teams to delineate and foster key self-care skills. In fact, an international survey of individuals with CF found that only 10% reported introduction of the concept of transition before the age of 15 years." Research by Hewer and Tyrrell recommends that a formal "transition process should start from 11 to13 years of age."

Clearly this is a critical area that needs to be addressed by both parents and medical professionals. As parents, we must be proactive about initiating an effective transition with our child even if our medical clinic lacks  a process. So let's discuss the transition experience and examine ideas about how it can be most effectively accomplished from a parent's point of view.

While Hewer and Tyrell recommend that a formalized, written transition process should start at 11 to 13, preparing your child for transition should start at diagnosis or certainly by toddlerhood. When children start brushing their own teeth and getting themselves dressed, that is the start of transition. transitiontrtrfdgtransitThat's because transition really consists of two parts: the shifting of medical tasks and the shifting of personal responsibility in general. There is certainly some overlap but the personal responsibility piece encompasses a whole lot more than the medical tasks.

Generally speaking, if a child is responsible around schoolwork, chores, money, and basic self-care issues (like personal hygiene), then the child will be responsible around the medical tasks as well. This is great news for us parents because general personal responsibility can be learned much earlier than medical tasks and around less risky issues.

So transition is a cumulative process meaning that all of the little things we do over the years as a parent will "add up" and help our children be ready (as young adults) to successfully move into the real world. For our children with special healthcare needs, this includes the adult medical system.

Parents must focus their attention on two primary areas: Responsibility Training and Medical Task/ Disease Knowledge.
 
Raising Responsible Children
All children must make a shift from parental to personal responsibility. All children must learn to make good choices which are independent of active adult involvement. And when a child has special healthcare needs, there is the additional process of shifting the medical tasks and responsibilities.

The challenge is, telling our children to simply “Be responsible!” doesn’t work. It is ineffective to demand, “Do your homework, take your medicine, and make good choices." Responsibility is something that has to come from inside the child- not from parents trying to force it from the outside.  And taking responsibility starts early. In fact: The transition process begins when our children are old enough to throw peas from the high chair!

So the big question is: How do we raise kids with special healthcare needs who are responsible and prepared for the real world?  First, let's consider some important concepts around general responsibility that can easily be implemented starting in toddlerhood:

1.Rather than telling a child what to do and when to do it, use choices. Just as adults, children need to feel like they have some control over their lives and bodies. What happens when we say to a child: “Come here and take your medicine!”?  Power struggle, arguing and complaining, right? Instead, try: “Would you like to take your pills with apple juice or grape juice?” or “Are you planning to do your breathing treatment before or after soccer practice?”  Give choices as much as possible in all areas of life including food, homework, chores, and medical requirements. The more control is shared, the less the likelihood of control battles.

2.Replace statements with questions. Here's what Jim Fay, co-founder with Dr. Cline of Love and Logic, says about this: " How can we make sure that our kids are doing their fair share of the thinking? How can we keep ourselves from getting pulled into working harder on their lives than they are? How can we help them become prepared for a world full of decisions and consequences? Replace statements with questions.”

Some of the most powerful moments come when we empower kids by asking them what they plan to do about various situations instead of telling them what they need to do. The implied message we send says, "You are smart. You can come up with the answer." Children who are given this gift are far more likely to succeed in school and in life. On top of that, the human brain has a hard time ignoring the questions. It automatically searches for the answers - it just can't help itself.

What a gift we give kids when we encourage them to think rather than telling them what to do. A child who is redirected with the question, "Are you sure this is the right place for that behavior?" will respond much more thoughtfully than the child who is told, "Stop that!" One method invites thinking; the other invites resistance and battles for control. Which do you prefer? In either case, we are enticing young brains to do lots of thinking by simply asking questions rather than stating "how it is." So, do your kids' brains a favor and feed them a steady diet of questions." 

Some questions you might ask your child with special healthcare needs are:

 “When will you be doing your therapy today?”
 "What else can you eat today to get the proper nutrition?"
 "What might happen to your body if you forget to take your medication again?"
 "What is the best choice for your body?"

3.Teach your children early on about their medical condition and be honest about the consequences of non-adherence. Early education is critical. Children need to learn the facts and details about their medical condition including care requirements.

Seek out the resources that are available for your child's age. There are many good books including ones for young children that address most special healthcare needs. For cystic fibrosis, the CF Foundation has published a few. "Cadberry's Letters" and "Taking CF to School"  are among Lisa's favorites. There are also websites developed by non-profits and pharmaceutical companies. CFVoice.com (sponsored by Novartis) is a great resource for CF parents and children alike.  Your own doctor may have good resources, too.

Honesty is important. In order for children to make good choices about their bodies, they need to know the truth about the potential consequences for bad ones.  Which brings us to point #4...

4.Learn good communication skills for discussing difficult issues. Parents face a challenge when attempting to discuss life-threatening content with their children. How and when does a parent tell a child that a medical condition might be life-shortening or debilitating? How does a parent tell a child with diabetes that he or she might lose a limb if blood sugar levels aren't controlled properly without sounding scary or threatening? This issue is not easily addressed in a bullet point and we have written extensively about it elsewhere.  But here are some highlights:

Difficult news should be addressed in a loving and matter-of-fact manner. The key is to show  curiosity and interest, rather than fear and angst, while outlining the consequences of non-adherence.

Generally speaking, if parents don’t show fear and angst, their children won’t become fearful. Children pick up on our cues.  Usually we don't know exactly how to handle these issues with our kids, so if we ask questions, they actually end up guiding us! If that method is good enough for therapists, it's good enough for parents! Some examples of questions to ask are:

• “How much do you know about your illness?”
• “How worried are you?”
• “How are you handling it?”
• “What can I do to make things easier?”
• “Is there anything more you need to know?

5. Take advantage of teaching opportunities. Sometimes in our haste and getting things done, we forget to use everyday opportunities to teach our children. In addition to talking about the big issues, parents can "think out loud" to their children daily about what is going on with their body, why things are happening, and what decisions are being made.

Here's an example: 
"Hmmm. I wonder if your body is not digesting it's food right. That might be why you have gas and tummy aches today. Let's see if it continues for the rest of the day, and if so, we'll call the doctor." 

Draw a simple picture about how the body digests food, read a picture book, or go online. After talking with the doctor, share (as possible and appropriate) what is said and engage your child in the process:

"Dr. Jones thinks it might be time to increase your medicine so your body can digest it's food better. Let's try it today. Can you keep me posted on how you are feeling?"  

Teenagers can make the call to the doctor themselves with you coaching as needed. Communicating about these kinds of details in a matter-of-fact, "let's take care of business" manner will help your child cope well with the challenges and learn about the nuances of caring for their bodies. This is where the training about medical knowledge begins.

6.Wise parents lovingly lay the responsibility for medical adherence on their child in small, age- appropriate increments as early as possible. When we use choices and allow our children to make their own decisions early on, they will grow in responsibility naturally. Lisa shares an experience:

At about age six, my son surprised me by starting up his vest (a mechanical Chest Physical Therapy device) right out of the blue because he “wanted to get it done before his friend came over so that they could play longer.” I didn’t even realize he knew how to work the thing!  Since the age of four, we have given Jacob many choices around when, where and how he does his CPT. Notice we don't give him the choice IF he does his medical treatments. We set firm limits around treatments being completed within a certain time frame.  

7.Be sad, not mad, when your child makes poor choices. When we give our children appropriate responsibility to handle their health care requirements, then we need to be prepared for mistakes. Kids are human. They will forget to take their medication. However, our children will learn depending on the way we respond to the mistake. 

Responding with empathy, or sorrow, prior to imposing consequences is more effective than anger and punishment.  Anger and punishment causes a fight or flight response; it's fear and guilt based. Empathy causes children to think.

There have been times when Lisa's children decided to put off their breathing treatments until later in the day. Then they forgot altogether. Mom and Dad's response has been along the lines of, “Oh sweetie, what a bummer. We won’t be going out to dinner (at your favorite restaurant) now because we won’t have enough time to do both.”

This type of response makes a much bigger impact than lecturing, nagging, yelling, or threatening. For success in parenting, use few words and meaningful action instead.
 
8. Allow your child to experience the consequences of their mistakes when the price tag is small. Effective parents raise kids who understand that their actions have consequences - both good and bad -which will affect the quality of their lives.

Instead of rescuing them, allow your children to experience the natural consequences of their non-life or limb threatening choices. It’s better for a child to learn about safe driving by crashing a tricycle on the lawn than cracking up the family car at age seventeen! There’s no better teacher than the school of hard knocks. Start early; while the price tag for mistakes is much lower.

9. Encouragement is more effective than praise. When parents say things like “I’ll bet you’re really proud of yourself” rather than “I am proud of you” then they child give their child the pride of a good decision.

Praise is really an external judgment of the child’s performance and can backfire if a child is resistant, doesn’t feel like being judged, or doesn’t particularly like the parent at the moment. And, of course, false praise almost always leads to disrespect. Questions are again very useful. Asking a child, “How do you always manage to remember your medication?” is much more effective than “Good job on remembering your medication.”

10.Set a good example. Take good care of yourself. This includes taking the responsibility for meeting your own physical, mental, emotional and spiritual needs. When we take good care of ourselves, then our children learn from our example and are more likely to take good care of themselves, too.

So that's how we increase the odds of raising children who are responsible, confident, and independent in all areas of life including around self-care issues. Now let's look briefly at the subject of shifting the responsibility of medical tasks.

Medical Knowledge and Self-Care Tasks
There are many medical details around managing a long-term, serious, chronic illness including nuances that can only be learned over time. Even medical professionals don't always know the "right" thing to do when things start to change.

In addition to medical knowledge, there are also the financial, insurance, and legal details that go along with it all. The average eighteen-year-old, unless properly trained for years, will not be prepared to manage it all without substantial help. That's why starting a phased, methodical training program at a young age is crucial.
Some medical clinics have "transition plans" written out to help you know what types of medical knowledge and tasks should be taught at the different ages and stages of your child's development. Others clinics don't have a formal plan or are working on one but it takes time, even years, for medical institutions to start a new program. In the meantime, your child is getting older.
 
If your child is age eleven or older, start working on this on your own. If your clinic doesn't have a transition plan, check around at other medical centers. For cystic fibrosis, there are many good transition plans already developed. We have posted several of them on our website for you.  http://www.happyheartfamilies.citymax.com/transition.html 

With some planning and parenting education, parents can massively increase the odds that their child will be ready to move up and out into the adult world. Not only is this good for the child, but it's also good for parents and medical professionals.

Everyone wins when a hopeful, optimistic, young adult goes out into the world with confidence and says: "I can do it! I recognize this world because we practiced for it at home!"

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Many of these concepts are from the award-winning book “Parenting Children with Health Issues" by Foster W. Cline M.D, child psychiatrist and co-founder of Love and Logic, and Lisa C. Greene, mom of two kids with cystic fibrosis and parent educator. Visit www.ParentingChildrenWithHealthIssues.com.