How can I get my son to wear his CPAP mask all night?

Question

My son (12 years old) has down syndrome and pulmonary hypertension which requires him to wear a CPAP mask at night with supplemental oxygen. The problem is that he takes it off half way through the night. I always check on him before I go to bed and sometimes he's already taken it off and I have to put his mask back on. His cognitive delays from having down syndrome makes it difficult for him to understand the importance of wearing it.

We've tried several things to get him to keep it on, including:

1. Setting a "prize" next to his bed that he gets if he wears it all night.
2. Rewarding him with more screen time.
3. Punishing him by removing screen or video game privileges.
4. Praising him when he does wear it.
5. Showing disappointment when he doesn't wear it.

Some of these have been more effective than others. For example, setting a prize next to his bed is rather effective, but it's also very temporary. It will work for one night, but then it won't work until we find something else that he really wants (note: the prizes are cheap things like treats, key chains, or small toys).

Are there any methods that have worked for others or something else that I haven't tried? Is there a way I can teach him the importance of wearing it?

Answer 1

First, may I start off by saying that I understand how difficult this must be for you intellectually and emotionally. You know your child needs CPAP, your doctors know he needs CPAP, but your son doesn't really understand the vital importance of it, and no one has a solution to the problem of how to get the child to accept the mask for the whole night.^* I'm so sorry.

Who is helping you manage your child's PAP needs? Some research shows that a team approach provides the best results for successful PAP therapy. I don't know what country you're in, but in institutions with a high standard of care, e.g the Sleep Center at The Children’s Hospital of Philadelphia, the team includes pediatric sleep technologists, behavioral sleep specialists, social workers, psychologists, nurses and board-certified physicians in sleep medicine. If you've not met with any of these professionals, you might try to seek out their expertise.

You state that setting a prize next to his bed that he gets if he wears it all night has been successful one night at a time. If it works, it works! Some have suggested a sticker chart (child picks and applies the sticker) is also helpful, particularly if there's a substantial reward for (x) number of stickers. It need not be something material; it could be a family outing, a trip to a nearby amusement park, a fishing trip, a sleep over, a trip to the ice cream parlor, whatever your son cherishes, but it should be more immediate than remote (fewer stickers required to cash in for the reward.)

Another possibility is to keep your child busier and awake (fewer/shorter/no naps) during the day so that when he does go to sleep, he is more likely to fall into a deeper sleep more quickly and less likely to remove his mask. (You'll find more like this here).

It might help you to know that you're far from alone. There are support groups for parents in your situation. Whoever seems to know the most about the issue, whether it's your doctor(s), the sleep lab (or whoever evaluates the fitting and function of the mask), or other involved persons, ask them for information about support groups that might be helpful. Not only can you get emotional support there, but parents who have struggled/are struggling with the same issue may have some helpful suggestions.

Many machines can remotely alert someone when the user's O2 saturation falls or the mask comes off. While it will not increase your son's acceptance of the device, an alarm notifying you of a problem may help you to insure he gets more hours of PAP in per night (more is better). He may also wear it more if he's asleep when it's reapplied (I don't know; you're in a better position to answer that.)

Patient education is helpful in compliance with CPAP^**. Though your child has Down Syndrome, has he been offered the opportunity to really learn from others (not just Mom and Dad) why he needs CPAP? Normally, one-on-one clinic visits, follow-up telephone calls, telehealth interactions, and group meetings are helpful. Perhaps if he meets with others in his age group who are trying to educate themselves, it will help.

Unfortunately, I have very limited experience with trying to increase compliance with CPAP in children with Down Syndrome. I wish I could do more, and I hope someone with more experience sees this question. There isn't much literature (though there is some) in this area. If you want to search the literature, I suggest you use Google Scholar rather that Google, using phrases such as "improve CPAP Adherence in children". You'll get more reliable information that way.

*_{Most people - even adults - are not very compliant with PAP (CPAP or BPAP). In one small six-month study with 29 children, one third dropped out of the study, and the remaining subjects had suboptimal compliance.}

**_{Education alone, though, is responsible of only about 30 additional minutes of compliance in adults.}

_{Novel Aspects of CPAP Treatment and Interventions to Improve CPAP Adherence
Improving Positive Airway Pressure Adherence in Children
Correlates of Pediatric CPAP Adherence includes Trisomy 21 patients.}

Answer 2

All five items in your list of things you've tried are variations on the same thing. Rewards and punishment are really just two sides of the same coin, and praise and expressing disappointment is just rewards and punishment with your attention and appreciation being the currency. I'm concerned to see in comments that this is all the medical professionals could suggest, as it is at odds with what is known to be effective, and a particular poor fit for your specific situation. You are putting all eggs in the extrinsic motivation basket, employing different tactics of control to achieve a goal that you've set up.

An over-reliance on extrinsic motivation has some rather serious drawbacks. Most importantly, in your case:

• Any rewards system will be subject to inflation. While we as parents often want the desired behaviour to be internalized, so that we can gradually remove the reward, whatever you reward the child with will eventually become abundant, and the child will desire more for the same effort. (Just like we may expect an occasional salary increase for doing the same job - or would you be fine with your employer suggesting to gradually lower your salary, now that you know the task so well?) Rewards may work well for singular events of particular importance (agreeing to take a vaccine, perhaps), but is a poor fit for something you need the child to keep doing in their everyday life. (As you may already have begun to notice?)
• Extrinsic motivation has an inhibiting effect on people's intrinsic motivation. If you give someone a reward for doing something they already enjoyed doing, they will come to appreciate the reward more than the task, and will be less enclined to perform the task if no reward is offered.
• While use of rewards can be seen as manipulative in the sense that you are using tactics to exert control, it may well be construed as a fair business deal: if I do X, I get Y. This will give the child the impression that they have the choice not to do X, if Y isn't appealing enough, which is often not at all what we intend when we rely on rewards. So if your child ends up growing bored with the stuff available on the screen time you're offering, they may well opt not to perform the task of wearing their mask, which is, I suppose, not something you had intended to be up for negotiation.

(For the science on the inhibitive effects on extrinsic motivators, see this meta analysis, or if you're very interested, the book Punished by rewards by Alfie Kohn)

I would strongly consider abandoning all these means of external control in favor of a parenting that is autonomy-supportive. And given your situation, I want to stress that autonomy is not synonymous with independence. People can make an autonomous decision to accept help, for instance. It is all about self-determination - about being agents in their own lives.

What you're offering is help breathing. With no intention of trivializing the child's difficulties, I really think this is something that should be seen as an end in itself, and not simply a means to another end (such as a reward). For all we know, it might be the feeling of being controlled in itself that the child resists. You need to turn wearing the mask into something the child recognizes as doing for its own inherent value.

Another problem with relying on methods of control is that we tend to jump to solutions before we have a clear understanding of the problem. If we are entirely in charge, and need only use whatever techniques necessary to achieve obedience, whatever the causes are for the child not wanting to do as we desire becomes less important, which is also shining through in your post. You are asking us how to get your child to do something, and there is not a word in your post about why he doesn't want to. You're commenting he doesn't understand the importance, but that on it's own is not enough to take the mask off. He must also have some reason to actively prefer not wearing it. If you're accepting that you need your child to choose wearing the mask, rather than submit to your decision that the mask should be worn, understanding why he doesn't already is absolutely imperative.

Now, you may or may not think you know this already, but I find that we are often wrong when we jump to conclusions. And even if whatever reason you've come up with would happen to be the right one, your child won't know that you know unless this is something that is unearthed in discussion with him. Your child will be more inclined to accept your recommendation when he knows you've heard him and have accommodated his needs into your decision.

(For further reading and resources, check out Ross Greene's "CPS model" - it would have to be adapted to your child's particular difficulties, but the work is based on the view that kids do well if they can - that is that most problematic behavior can be traced to some lagging skill. The "drilling cheat sheet" in particular contains instructions on how to elicit information from kids, although I fully anticipate you'll have to be creative in translating it to something you can use - be that as it may, I still believe this is the work that needs to be done)

And then, your strategy needs to be based on what you find out. If the problem is that the mask is uncomfortable, see what you can do to address that, rather than increasing the rewards. If, on the other hand, is that your child doesn't like the self image of needing assistance with breathing, you will need an entirely different approach, and making the mask more comfortable will do nothing to address that. It is absolutely crucial to understand his needs and take them into consideration when working out a plan moving forward.