Marieke van Dijk, Giel-Jan de Vries, Bob F Last, Marc A Benninga, Martha A Grootenhuis
Abstract
Objective: Parenting factors are assumed to play a role in the development and maintenance of childhood constipation. However, knowledge about the association between parenting factors and childhood constipation is limited. This study investigates the association between parental child-rearing attitudes and prominent symptoms of functional constipation and assesses the strength of this association.
Design: Cross-sectional data of 133 constipated children and their parents were collected.
Setting: The gastrointestinal outpatient clinic at the Emma Children’s Hospital in the Netherlands.
Patients: Children with functional constipation aged 4-18 years referred by general practitioners, school doctors and paediatricians.
Main outcome measures: Parental child-rearing attitudes were assessed by the Amsterdam version of the Parental Attitude Research Instrument (A-PARI). Symptoms of constipation in the child were assessed by a standardised interview. Negative binomial and logistic regression models were used to test the association between child-rearing attitudes and constipation symptoms.
Results: Parental child-rearing attitudes are associated with defecation and faecal incontinence frequency. Higher and lower scores on the autonomy attitude scale were associated with decreased defecation frequency and increased faecal incontinence. High scores on the overprotection and self-pity attitude scales were associated with increased faecal incontinence. More and stronger associations were found for children aged ≥6 years than for younger children.
Conclusions: Parental child-rearing attitudes are associated with functional constipation in children. Any parenting issues should be addressed during treatment of children with constipation. Referral to mental health services is needed when parenting difficulties hinder treatment or when the parent-child relationship is at risk.
Objective: To implement and to evaluate the effectiveness of the Uniformed Services Constipation Action Plan (USCAP) in our gastroenterology clinic for children with functional constipation.
Study design: This implementation science study included toilet-trained subjects aged 4 years and older who met the Rome IV criteria for functional constipation. Children were block randomized to receive either the USCAP or control. All clinic functional constipation plans recommended subjects continue pharmacotherapy for 4 months. Endpoints measured were clinical outcomes (resolution of functional constipation and achievement of a Pediatric Bristol Stool Form Scale [PBSFS] score of 3 or 4), patient-related outcomes (health-related quality of life [HRQoL] total scale score), and health confidence outcomes (Health Confidence Score [HCS]).
Results: Fifty-seven treatment group subjects (44%) received a USCAP (52% male; mean age, 10.9 [4.9] years) compared with 73 controls (56%; 48% male; mean age,10.9 [5.3] years). A PBSFS score of 3 or 4 was achieved by 77% of the treatment group compared with 59% of controls (P = .03). Subjects from the treatment group were more likely than the controls to endorse adherence to the 4-month course of pharmacotherapy (P < .001). Subjects who received a USCAP had greater improvements in HRQoL total scale score by the end of the project (P = .04).
Conclusions: The USCAP is a simple, inexpensive tool that has the potential to improve global outcomes for functional constipation in children and should be recommended as standard clinical practice.
To see the Vermont Continence Project’s “Constipation Traffic Lights Form and a plain language video describing its use, go to Constipation Treatment: Bowel Maintenance
Alison P, Thompson, Eytan Wine, Shannon E MacDonald, Alyson Campbell, Shannon D. Scott
Abstract
Pediatric functional constipation (FC) reportedly affects at least 1 in 10 children worldwide. Parent and family education is a key component for successful treatment, yet there is little research exploring what information families need and how to best support them. The aim of this review is to synthesize current evidence on the experiences and information needs of parents caring for a child with FC. We systematically searched published research and completed screening against a priori inclusion criteria. Thirteen studies (n = 10 quantitative, n = 3 qualitative) were included. We found 2 main themes, precarious footing and profound and pervasive effects. Heavy caregiving burdens fueled doubts, misinformation, relationship breakdown, and treatment deviation. In light of clinical recommendations, our findings reveal a potential mismatch between parents’ needs and care provision for FC. It is likely that both parents and health care providers would benefit from resources and interventions to improve care related to pediatric FC.
If your child attends school, you may be wondering how to collaborate with your child’s school team to support their continence. This video gives some of the highlights from our guide, Best Practices in School-Based Toilet-Learning & Continence, which is below.
Using rewards can be a great way to increase your child’s participation in toileting and continence. Many parents aren’t sure what to reward, or how. This video explains how to choose a good reward, how to give it, and what skills to reward. For more information on what to reward, check out our video about “Inchstones”.
A full transcript of the video appears below.
Hi, my name is Chayah Lichtig. I am the occupational therapy consultant and project director for the Vermont Continence Project. Today’s topic is “beyond the sticker chart: using rewards to teach toileting”. And that is exactly what we are going to talk about. Appropriate and creative ways to use rewards. While you are teaching toileting to your child.
So a comment that we get often is that people have been told that they’re not supposed to reward people for sitting on the toilet or other toileting related skills. And while there’s a certain logic to that, when you are thinking about a certain toddler or somebody else who might be motivated by toileting and learning new things about how their body is working, Unfortunately, not every toilet learner is motivated by toileting incontinence. This is especially true for our older toilet learners who may have months or even years years of frustrating, difficult experiences related to toileting and maybe have even internalized some shame or blame from the people around them about their continence challenges.
So having a reward when we are teaching toileting can create new excitement or a new commitment. And for someone who is maybe not feeling super excited about learning, toileting, having a reward can also clue a child into the most important skill in that moment, because that’s the skill that we are going to be offering. The reward for. It also has the benefit of helping us adults to remember what skill to focus on, because it’s the thing we’re rewarding and we can often remember to let a lot of other things go and let the pressure down around other aspects of the toileting experience, because they’re not the thing that we’re focused on in that moment.
Next, we’re going to talk about how to use rewards throughout the toilet journey. So as you’ll remember, phase one is the getting started or the getting restarted phase. This is the phase before we are asking our child to use the toilet. This is our ounce of prevention stage. We may be offering a reward to our child for entering the bathroom. We may be offering our child a reward for changing in the bathroom. We may be offering them a reward for engaging in hygiene. For example, taking part in dressing, undressing or wiping. We may offer a reward for taking their medication and something you’ve learned about perhaps from another one of our videos. You may also be offering a reward for your child during practice sets, which are sitting on that closed toilet or a pants up toilet just to get used to the feeling of sitting there.
So phase two is what we call getting to the toilet or back to the toilet. And there are several things that you can reward in this phase that aren’t just whether or not your child successfully gets their PE or poop into the toilet. For example, you can reward for the duration of sitting in the case of urination when you’re just expecting that your child is going to pee. 1 to 3 minutes is plenty. And when you expect that a BM might be coming out, 3 to 5 is the maximum amount of time that your child should have to sit.
So you may also want to offer what’s called a differential reward. That means you offer one reward for your child sitting and a larger or additional reward for a successful pee or poop. Remember that if your child sits on the toilet and they do happen to pee into the toilet, we’re not going to tell them that they didn’t earn the reward if they didn’t sit for a full 3 minutes because they sat as long as they needed to to urinate successfully.
It’s also important to remember that in phase two, we are not trying to stay dry.You want to keep your Pull-Ups. This is really important because when your child is just starting to have new control and awareness of their body, if we are asking them to stay dry, we are often reinforcing withholding patterns that your child has just started to change in phase three toward independence. We will reward for each successful void or a BM in the toilet.
We will reward for self initiation. Even if your child misses. And when your child is well established in getting themselves to the toilet, that is when you could start to consider using a token system, which means using something that isn’t rewarding in and of itself. That works towards a bigger prize. For example, ten stickers equals a trip to McDonald’s. Or when you fill out this entire picture of a favorite toy, we will go to the store and buy that toy. But remember, especially at first, we want to be giving a reward every single time because we want to really, really encourage child to be as consistent and as excited as possible.
So you may be wondering what makes a good reward. The five principles for a good reward are that it is easy to give, that you can give it immediately, that it is inexpensive or even free, that it’s high preference for your child and that it is not offered at other times. So to illustrate this, I’ll give the example of one of my favorite rewards: chocolate.
So if someone were going to reward me with chocolate for doing something that they really want me to do for example, my job, they might do something like give me a chocolate each time I write an email. But unfortunately, if they needed to drive to a store every time they needed to get me a piece of chocolate, that wouldn’t be easy for them. And it would be really unlikely that I was going to get that chocolate every single time. So it needs to be easy to give.
It also needs to be something that they can give to me immediately. If I write my email and I get my chocolate 2 hours later, I might not make the connection that the chocolate is for making for writing the email.
It also should be a relatively inexpensive chocolate. So if you are buying fancy Belgian dark chocolate for me, I will surely appreciate it. But it might be hard for the person who’s giving me those rewards to sustain that over a long period of time because I write a lot of email.
It also has to be something that’s high preference. So if you picked out something I didn’t particularly like, like another kind of candy, I might not actually be motivated to complete that task. But give me a chocolate and pretty good chance that I am going to want to do the thing that you ask.
It also can’t be offered at other times. Yes, it’s great that I can get a chocolate for writing an email, but if there’s also chocolate sitting right next to me on my desk at all times or in my kitchen cabinet, and I really don’t want to write that email, it might be more likely just to go get the chocolate that I can get more easily. So to increase the excitement of getting that reward, I have to not get it at other times that we want to use rewards to increase a feeling of excitement and well-being around the skills that we want them to learn.
So we really want to do what we can to help a child meet their goals rather than making it really, really difficult for them. So we want to analyze the routine. As we’ve discussed in other videos. What are the interest stones that your child is working on right now and what are the next steps to learn? Those are the ones to reward for, not the way off in the distance ones, right? You may also want to give them a choice. What skill would you like to work on next?
It could be something like pulling up your pants. It could be working on wiping, it could be washing your hands, whichever step they choose. That gives them some agency and some power in the process. You also will want to represent the goal and the reward. You see on this slide, there’s a very simple image that has a picture of a toilet with a poo in it, and next to it is a picture of that candy that you’re going to give to that child.
Some other tips to help your child reach their goal are to offer different forms of prompting. Remember that the goal is toileting and continence, not compliance. So we don’t want to have to get into a battle with our child to do the thing that helps them to get the reward. We also want to make sure that this schedule is predictable, right? Again, the goal is toileting and continence, not to be able to guess what’s coming next in their day. So something like a simple visual schedule that shows where in the routine of your day toileting usually falls can help a lot of kids to feel a sense of understanding and a sense of agency when it comes to toileting and finally make time concepts visible.
So as we’ve talked about in other videos, while some children may understand the concept of saying we’re going to sit for a minute, that is pretty abstract and we will be way better off and help a lot more kids if we show them the time using any kind of sound timer, kitchen timer, or perhaps a visual timer app, anything that relies on more of a pizza pie instead of counting down numbers.
Thank you so much for taking the time to watch this video. The information contained in this video is for informational purposes only. It is not a substitute for professional health or medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care professional.
In this video, we discuss some of the ways parents fund the things they need for their child’s incontinence, such as medication, diapers, and even equipment.
The current administrator for the Medically Necessary Supplemental Fund is Joanne Weschler: joanne.weschler@vtfn.org
The current supplier for Medicaid subsidized incontinence supplies is ActivStyle
A full transcript of the video appears below.
Hi, I’m Tammy Willey. I’m a family resources consultant. And today we’re gonna talk about paying for incontinence supplies.
Did you know Vermont Medicaid covers supplies of medication for underlying medical conditions that contribute to incontinence?
Let’s be specific.
Medicaid
Your child is likely covered if they have Medicaid. Dr. Dynasaur and Katie Beckett are other common names for Medicaid, and if they have an underlying medical condition, constipation, some developmental diagnoses, and other qualifying medical diagnoses.
Coverage for over-the-counter products, such as diapers and pull-ups, and medications, such as MiraLax and other medications, are available with a prescription from your doctor. Products will be distributed via an online supply provider: ActiveStyle.com, while medications will be through your local pharmacy.
Not Medicaid
And if you don’t have Medicaid, contact your insurer to see if supplies related to your child’s medical condition are covered under your policy.
Also, consider Medicaid’s secondary coverage.
Contact a family support person at Vermont Family Network or visit their website to access a document called “Six Ways to Access Medicaid and Other Healthcare Benefits.”
There’s also something called the Medically Necessary Supplemental Fund. This fund helps pay for items that are medically necessary, but not covered by insurance or Medicaid. It can cover expenses of special equipment such as the Squatty Potty, handheld bidets, and other items. It has income guidelines and families can reach out to Joanne Wechsler at vermontfamilynetwork.org to find out if they qualify.
Additional Resources
Additional resources are available at Children with Special Health Needs. This organization helps families of children with chronic illnesses and developmental disabilities get support to navigate funding and care coordination support.
Remember, these resources exist to help families.
Don’t hesitate to get more information and have some help offsetting some of these costs.
When parents start their work with us, they often ask how to “jumpstart” the toilet teaching process. In this video, we explain why less pressure, not more, may help you and your child get started stronger and with less conflict.
Associated Resources:
We know it might not make a lot of sense to “lower the bar” with your child around toilet use right now.
Take a look at this list of Steps to Toileting Participation to think of some low-or-no stress ways your child can be a part of the toilet-learning process.
If you are getting into power struggles with your child, check out our Prompt Hierarchy to consider how you can decrease the pressure put on your child.
A full transcript of the video appears below.
Hi, I’m Tammy Willey, family resource consultant with the Vermont Continence Project.
And I’m Chayah Lichtig, Director and Occupational Therapy consultant with the Vermont Continence Project. So we’re going to talk to you in this video about how to relate to your child and their continence as you’re stepping into this program. For example, hey, Tammy, why did the chicken cross the road?
I don’t know why, Chayah?
Because the rooster farted.
Good one, good one, Chayah. Okay, I’ve got one. And why did Tigger stick his head in the toilet?
Why?
He was looking for Pooh.
Oh, that’s a good one.
Yeah, but in all seriousness maybe you’ve been asking yourself why is this toileting thing taking so long?
That is a question we get a lot. You’re not alone. We find that parents, and even well-meaning, well-informed providers are often missing some key piece of information about a child’s health, development or learning needs that’s made it hard for them to really get toileting.
So what’s the next step, Chayah?
Hm, well, we have two goals at the beginning of this process. Number one, to better understand the reasons for your child’s incontinence. This is most of what we discuss in the first two units. Goal number two is to create new positive associations with toileting. This is actually the harder part for most parents. It means taking your foot off the gas and decreasing the pressure on our kids’ continence and toilet use.
Okay, so how do we take our foot off the gas and maintain momentum? I mean, shouldn’t we take it up a notch and be more assertive to move things along?
There are a lot of reasons that a parent might want to pull back on their focus on toileting incontinence with their child for a moment. So parents and children often get into difficult dynamics around participating in toileting. In this process, you may have to ask your child to do things they’ve never done before and you’re going to need them to be on board. You’re probably also tired of doing the same thing but without any change or improvement. Instead, we hope you’ll devote that time and energy to learning about the signs that we’re going to teach.
Tired, frustrated, overwhelmed. Tell me more, Chayah.
We recommend a positive approach that decreases the pressure for everyone involved. We suggest that you step back on direct prompting in terms of sitting on and using the toilet, also, hygiene and dressing. Help your child more and decrease asking them to sit on the toilet. Decrease expectations of them being dry and clean. This means let their natural patterns emerge at least for a few days while you gather data.
So it sounds like you are suggesting that parents build their toolbox.
Yes, in the coming videos, we’re going to give you a lot of information that will help you have a clearer picture of your child’s skills and needs related to continence. We’re going to focus heavily on health questions because almost all people referred to the Continence Project have a health concern that affects their continence. Tammy, can you offer any advice or suggestions for what a parent can do or tell themselves in a moment of change and challenge with their child?
Yeah, I think a little reflection can help us shift our perspective. I think ask yourself how do you want your child to remember toilet learning? How do you want them to feel about it? And what do you want your role as teacher to look like? I think the goal is to not engage in huge power struggles in this, around this process. Am I right, Chayah?
I agree with that completely.
So Chayah, ready for another poop joke?
No, they stink.
Yes, that was perfect. Thank you so much for taking the time to watch this video. The information contained in this video is for informational purposes only. It is not a substitute for professional health or medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare professional.
“The Constipation Traffic Lights” (.doc) is a treatment planning form you can bring to your appointment. It can help guide your conversation about how to treat your child, if they are diagnosed with constipation. It is shared in Word document form so your healthcare provider can fill in their specific plan.
A full transcript of the video appears below.
Hello, my name is Kelly Savitri. I’m a nurse with the Vermont Continence Project. In this video, I’m going to offer you some advice about how to talk to your child’s healthcare provider about your concerns regarding your child’s incontinence.
Many people think of their child’s incontinence as being mostly a developmental issue and that their child will learn when they’re ready. Some parents never mention their child’s incontinence to their provider or only do when they have a routine visit scheduled. We hope our videos have given you a hunch that medical concerns are also an important part of planning for your child’s continence and toilet learning. Since your provider is the only one who can diagnose, prescribe, and make a treatment plan for your child, they are an essential member of your team.
Functional constipation frequently goes undiagnosed for many reasons. At the Continence Project, we have worked with many different providers, and we have encountered a wide range of experience, knowledge, and comfort with diagnosing and treating incontinence concerns. Sometimes children have complex medical needs, and other concerns are higher priority, such as issues affecting the heart, lungs, or kidneys. So there isn’t as much time during an appointment to talk about incontinence. Many of the children who get referred to our project have neurodiverse diagnoses, such as autism, or they may have developmental delays. Often providers expect children with these kinds of diagnoses to have difficulty with toilet learning, so incontinence is not treated as a concern until they are much older. Finally, diagnosis of constipation tends to focus heavily on frequency. So a simple question like “How often does your child poop?” may not give a provider all the information that they need.
Sometimes we need to build a case by looking at all of the symptoms on the bowel symptom checklist put together. This is why we encourage caregivers to do some preparation before they go to their child’s healthcare provider. We like to think about this process in three parts, things you do before the appointment to prepare, things you do during the appointment, and things you can do afterwards.
To prepare before your child’s visit, take data on your child’s bowel patterns and bring this along. Healthcare providers like to know how long something has been going on and how severe the issue may be. Also, complete the Bowel Symptom Checklist and write down notes of anything else you feel is important to tell the PCP. When you schedule the appointment, tell the office what your concerns are. If your child’s PCP has an online communication system, such as UVM’s MyChart, you can share your observations and concerns and a completed copy of the Bowel Symptom Checklist through the portal. This way, you won’t need to explain as much in front of your child, which might embarrass them, and you’ll give the provider more time to consider your concerns. You may also want to print out a copy of the Constipation Traffic Lights form. If your child’s PCP does diagnose constipation, you can ask them to clarify how to know if the treatment is working.
During your child’s visit, remember that there is nothing to be embarrassed about. Most incontinence has some sort of medical cause, and a doctor is a great person to discuss it with. You may need to press your PCP about your concerns. For one thing, you may need to emphasize to your PCP that this is a big concern for you and that you need their help.
Use the Bowel Symptom Checklist to present your concerns. If you believe your child is constipated but their PCP doesn’t, consider asking them what they think might be causing your child’s incontinence struggles and their digestive symptoms. Once you’ve presented your case, your provider will make recommendations about a treatment plan. Remember that you are a partner in this process. If you have doubts or concerns, please voice them. Ask how long you should wait before expecting results. Also ask what kind of results you should expect. This is where the Constipation Traffic Lights are very helpful. Once your PCP defines what counts as green zone for your child, you will know whether your plan is working.
If the PCP prescribes medication with or without a clean-out, consider setting up a check-in with your PCP or another member of the office staff, such as a nurse, after the clean-out is complete or after they’ve been on medication for one or two weeks. Ask your provider what the best method is for you to ask questions about the treatment plan once you’ve started. They may recommend calling to talk to a nurse, or they might suggest messaging them directly on the patient portal. If so, make sure you know how to use that technology. After the visit, expect treatment to be an ongoing process that will require follow-up communication between you and your provider. If you’ve started a medication plan and have any questions as to whether it’s working, reach out to your PCP sooner rather than later. Remember that getting the right dose of medication might take some time. Utilize the traffic lights action plan to give you some idea of when to increase or decrease the medication depending on your child’s bowel movements.
Don’t settle for poor results. If your child continues to strain, stool less than once per day, have incomplete BMs, or they have excessively loose stools, work closely with the PCP to try something different. Most of the time we see families have fabulous success in creating healthy bowel patterns for their child with the help of their PCP. Every once in awhile, the usual treatment just doesn’t seem to be enough, and it’s possible that there is something more medically complex going on. In these situations, it may be necessary to ask for a referral to a gastroenterologist for further investigation.
Here’s some additional tips. Remember, if your child is on Medicaid, whether that’s Dr. Dynasaur, Katie Beckett, or another form of Medicaid, ask about getting a prescription for the diapers or briefs and medication they need. Most children who are incontinent are eligible, and chronic constipation is an eligible diagnosis. See our video on paying for necessary incontinence medication and supplies for more details about that.
Many provider offices are very busy, and communication can be difficult. Ask your provider if the office has a care coordinator or another person who is available to answer questions in a pinch if you’re having trouble.
Thank you for taking the time to watch this. The information contained in this video is for informational purposes only. It is not a substitute for professional health or medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider.