Helping families understand the educational system alphabet soup

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FINAL S3 educational narrative_Page_1It is important to help families become advocates for their children. For children with behavioral conditions, this is even more important because children’s behaviors often can lead to stress and strain on peer relationships and functioning in school. However, there are terms or abbreviations that need to be explained in clear language so families can be prepared.

Parents often rely upon their child’s pediatrician when faced with stress around their child’s behavior. However, I have learned that many pediatricians often do not feel comfortable with coaching families about educational advocacy because it is not something that is taught during training. Aside from opportunities to learn what this is all about with individual families, this is by and large a skill that is missing and thus leaves many pediatric providers uncomfortable with these questions.

Helping families become comfortable engaging with the school and being involved in their child’s education increases the likelihood of the child’s educational success at any age. Some of the positive outcomes, regardless of the family background, include:

  1. Higher grades and test scores
  2. High quality work habits and task attendance
  3. Regular school attendance
  4. Better social skills and behavior
  5. Graduate and go on to post-secondary education

The first step is to ensure parents are viewed and feel like an equal partner at the table when working with schools. However, if parents have not had positive experiences with the school system either as a child or with their child, it makes it less likely that the parent will know where to start.

That is where pediatric providers come in and can help coach families on the importance of educational advocacy.  As part of our ongoing work with ADHD group visits, one session is dedicated just to this topic because we have structured sessions to focus on the various treatment modalities for ADHD (Note: we work hard to make sure families understand that even though medications are often the first thing they think about when ADHD comes up, it is just one part of treatment. Positive parenting and educational support are equally as important!)

It also became clear that pediatric providers really crave tools to help explain the “alphabet soup” tied to understanding educational advocacy.  So we engaged our patient advisory board and patient engagement core to help us translate these complex topics into something that can be used by the pediatric provider when talking with parents about interfacing with school.

We learned that parents want to hear about others’ stories about school experiences, even if it does not entirely relate to their own child. Stories are powerful ways to understand concepts or scenarios and that ‘first-hand’ experience is valuable to other parents. Moreover seeing different approaches can help families adapt to their own situation. As a result of this process, our design team came up with a “choose your own adventure.”  Every aspect of this colorful brochure has been carefully thought out–right to the “pauses” rather than hard stops at each part of the story.

During our studies using this in our ADHD group visits, these tools were welcomed by parents and providers since it helped simplify the conversation and served as a nice road map for helping both parties to talk about the process.

Download a copy of the English version here.*

Download a copy of the Spanish version here.*

*Special thank you to our patient advisory board and Dr. Sarah Wiehe, Dustin Lynch, Courtney Moore  (IU Patient Engagement Core) & to Helen Sanematsu.

As always, please share your experiences using these tools, whether as a parent or provider.

 

 

Parenting: there is no “right” way

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keepcalmOne of the things I get asked about is whether there is a “right” way to do things when talking to parents about how to raise their children. My response? No, there is no “right” way, but there are likely other ways–especially when something a parent is doing in the moment is not working. Some times it takes another person who can be objective to think through a situation and come up with a different approach.

This is because how one takes on the parenting role is often a reflection of one’s personal beliefs, values, culture and past experiences. Plus there are other factors to consider:  the child’s temperament (or their usual way they respond to a situation), the presence of multiple kids in the house, and other issues within the parent (such as maternal depression or anxiety) or outside of the parent’s control (violence in the home, life stress) that often affects how well a parent can attend to their parenting role.

There are countless books on just about every parenting topic you can imagine. I certainly have not read them all, but I do try to keep up with as many of the most popular titles available because I am often asked for my opinion. Take sleep for example. If you go to the bookstore or library and look at all the parenting books on getting your child to sleep, it really is amazing at how many titles there are and the different view points on this topic. It is mind boggling. If you read more than one book on any topic, advice can be conflicting. But which one is right?

I have learned through my own parenting journey and those I have observed that parenting takes perseverance and an ability to look inward at one’s actions and emotions. The key is to be consistent and to give yourself a break because there is no such thing as the “perfect parent.” No matter which parenting approach to sleep you identify with, you are likely to succeed if you give which ever techniques you choose a solid go and that your partner is in sync with your approach. It also means re-evaluating when things don’t go the way you expect and being open to other ways it can be done.

This is what makes counseling parents on this topic so challenging because in the end, we ask parents to take the first step to try something new or different and giving it a good go. Sometimes it takes a lot of trial and error. This can be hard especially if a parent is stressed and feels that they have no time to keep trying behavioral strategies. Unlike other issues parents come to see pediatricians for, behavioral issues are not treated with medicines. At least not at first and especially not for young children without first understanding how to optimize the environment and parent-child interactions. I often tell parents that there is no magic wand or potion I have that can make the challenging behaviors go away overnight or that will erase the stress. The best we can do is to ensure all parties agree on the alternate approach, try it, and then report back. There is not a “one size fits all” approach to parenting…but there is a team approach.

I find the best place to start is to remind parents of the small successes they have achieved in the past (potty training is one the hardest tasks to accomplish and yes, eventually all children are potty trained!), to ask them what worries them most about the behavior in question, what they are hoping to achieve and  what they have tried.  Together, we brainstorm other ways of handling the situation. When needed I often seek input from teachers and other family members who interact with the child to see if the challenge is only with one parent or in one context. Sometimes we need to bring on board behavioral therapists who often do the hard work of providing weekly support and guidance to families, especially if families need more one-on-one time to begin to change parent-child interactions. I am reminded of the quote, “It takes a village to raise a child” and this is indeed true.

Parenting is hard, but it is also a very rewarding life experience. We can continue to strive to do the best we can and to be role models to our children when we have those “mommy or daddy fail” moments. We must embrace those moments and learn from them and keep moving forward.

Praise: the undervalued positive parenting tool

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PraiseWe have all heard the advice to praise kids more. However, that requires some clarification. We need to communicate clearly to our children what it is we like about what they are doing when they are doing it. This helps to “connect the dots” between the desired behavior and what our expectations are. As busy as we all are, we can forget that feedback is helpful, especially when you want someone to repeat a behavior again.

It is easier to focus on what has not been done, what has been done wrong or what needs to be done quicker. Notice also how when we focus on the negative, it often is done with  raised voices because we are frustrated, angry, or disappointed.

Yet, these are exactly the times when we can make use of a teachable moment. We can instead turn it around to help our children understand what it is we want them to do by using praise.

What do I mean by praise? Not simply issuing a generic or vague statement, such as “good job!” or “wow!”To be as effective as possible, make sure praise is SPECIFIC and IMMEDIATE. This is especially helpful when giving praise to a younger child or a child with ADHD. By communicating exactly what it is you liked when your child completes a task or behavior, you are letting children know that you notice them and their actions. This, in turn, will help children feel good about themselves, about the choice they made or the way in which they acted. When children feel especially proud or receive positive attention, they are more likely to have a repeat performance.

This is how praise can be so powerful. Yet, it is woefully underutilized and overlooked as a way to help shape behavior.

This, however, doesn’t mean to praise everything and go over the top. In order for praise to be effective, you need to use it appropriately and with genuine feeling. Kids can often see through praise that is given just because or praise that may even end up not being true, “You are the smartest kid I know!” Praise when delivered right can be a powerful motivator to help give kids the extra boost they need to keep going with challenging or multi-step tasks. Praise can help them see that they are capable and competent, help them see we value their contributions.

Sometimes parents may feel praise is phony or should not be used for tasks or chores that just should be done. However, children often need guidance to understand what is expected of them. When parents use praise for making an effort or for compliance with a request right when we ask or without argument, it helps children keep going and to try to be the best they can be.

We all like to be recognized for efforts in our work, in our homes and in our relationships. It reminds us that someone else values us for who we are and what we do. Who doesn’t thrive on little reminders?

Below are a set of handouts (in English and in Spanish) on the basic principles of PRAISE that can be used when counseling families about the importance of this tool.

Click here for the English handout.*

Click here for the Spanish handout.*

*Please retain copyright in the lower right hand corner.

Note: I always welcome comments on the handouts in general, its utility and any feedback you receive from parents.

Time-In: The Foundation of Parent-Child Relationships

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The concept of “time-in” seems so simple but it is often overlooked once children grow older. We get busy. We are tired. There are a million things to do. However, everyone needs ‘special time’ with their partner, spouse, parent, friend. Somehow, as we grow older and our lives become even busier, it is easy to forget the small things.

I first learned about “time in” when I sat in on a 22-week parenting group. This was before I had kids of my own. I had been running a foster care clinic in Seattle and was seeing well intentioned foster parents struggling to care for children entrusted in their care. Children who were acting out because of the stress and scariness of losing their parent, their home. Sometimes they acted out because they were angry and tired of all the change, all the uncertainty. Some children were placed with strangers. But sometimes children were placed with family friends or relatives.. but for that moment, it was not with their parent. All this translated into a difficult time for all.

I learned a tremendous deal during that parenting group led by Dr. Carolyn Webster-Stratton, the developer of the Incredible Years parenting series. I also learned that pediatrics residency had not prepared me for the tough questions that these foster parents had and the even tougher behaviors the children were having. It didn’t feel right to medicate these children just to “calm them down” or “make their anger or aggression more bearable.” These children needed security, routine, structure and the repeated knowledge that a nurturing and caring adult was in their corner.

In that group, I learned Dr. Webster-Stratton’s approach was to teach the skill of “time in” no matter if the parenting group was for prevention of behavior problems or for treatment of them. She ALWAYS started with building that foundation. I learned if parents do not make an effort to do “time-in”, “time outs” won’t work. This is because time outs are essentially an extended ignore and if parents are not  giving children positive attention in the first place, time outs won’t make a difference.

Time-In simply refers to spending one-on-one time with another person without life distractions. For young children, the word “time-in” often conjures up images of parents on the floor playing with their children. However, even as we grow older, time-in is just as important. It can be that ‘check-in’ with your high schooler after practice while driving home or the family conversations over dinner.  Time-in means going back to the basics of just focusing on your child and being sensitive to their cues, their need for attention. We can forget that even with all the material things we can buy our children, our time and presence is what matters the most.

Educating parents that children thrive on attention is important and should start early. Attention can be positive (hugs, kisses, praise) or negative (yelling, reprimanding); in the end, children just want our attention. If parents give positive attention freely, kids won’t have to act out to get attention. This concept applies to all relationships. Water and tend to your friendships and they blossom and thrive; neglect them and friendships wither and slowly lose touch over time.

Always go back to the basics.

Below are a set of handouts focused on “Time In” to be used with families to discuss the importance of this essential positive parenting skill.

Time In English (English).*

Time In Spanish (Spanish).*

Parent-child Time-In Love Note Activity (It’s Challenge Time).*

*Please retain copyright in lower right hand corner.

For more information about The Incredible Years, go to www.incredibleyears.com

Why engaging families in research is important…

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images-2I have been working closely with my ADHD patient advisory board (PAB) for the past several years to improve upon ongoing work examining primary care-based interventions for ADHD. It is hard to believe we are nearing the end of a 2 year process. I have witnessed the change within parents who participated in the research as a ‘subject’, then agreed to serve as a ‘consultant’ to me and my team to help us think through important study issues and brainstorm solutions as challenges arose…and finally to ‘collaborators’ in the final stages of the current study.

However, they are not the only ones who have changed. I have changed too.

As a behavioral pediatrician, I see patients in clinic to provide recommendations to families who are struggling with child behavior problems. As a researcher, I take those clinical experiences and think of new and different ways to solve the bigger problems of earlier identification and management of behavior problems in busy clinics, how to improve communication at the point of care and finding solutions to support pediatricians and families in the process.

It was not until I worked closely with the parents & children who were members of my PAB that I truly began to appreciate just how meaningful their “voices” were to the work I do.

Don’t get me wrong. I have always been a collaborative person. I think that is partly why I love developmental-behavioral pediatrics as a field. It is, by nature, an interdisciplinary field. It is also why my research has always involved working within the clinics and the healthcare team and not simply analyzing data. Add to the mix a wonderful team of health communication designers and I was hooked.

Below is a video filmed by a co-investigator/filmmaker, Mr. C. Thomas Lewis, from IUPUI School of Informatics and Computing a few weeks ago to tell my story about working with a PAB and how it has changed my approach to conducting health services research.

Watch my story by clicking here.

If you are interested in learning more about health services research, check out the Indiana Children’s Health Services Research website at: www.ichsr.org

 

ADHD Group Visits: ‘Top 10’ pre-implementation checklist

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UnknownThe idea of group visits is not new.  This model has been used successfully by psychologists and therapists for a variety of issues for group therapy and patient education. The first paper using the group model in pediatrics was published in 1977 by my mentor, Dr. Martin Stein, who used groups for mother-infant care. Another set of papers were published by Dr. Lucy Osborn in the 1980s examining its use for well child care and patient education.

In 2005, I was given the opportunity to see parenting groups in action. The group dynamic is powerful. I was able to watch skilled facilitators work with a group of parents who were strangers at first but became a support system to each other over time. Those bonds usually lasted beyond the groups. I was also able to see the methods used to engage participants so they felt the group a safe place for idea exchange, a place to come and learn from each other and even role play parenting techniques. I quickly became a believer. However, its use in pediatrics has remained limited for several reasons. Outpatient primary care pediatrics is high volume and busy. Visits are brief.  Scheduling changes and space considerations and yes, at the end of the day, how would we get reimbursed for these visits?  These issues must be addressed as clinics consider implementing group visits.

One of the things we have learned about designing and implementing group visits for ADHD is that there are common logistical elements to think through before starting:

  1. Identify a champion who can help create enthusiasm and buy-in from within the clinic. This is the essential step. While having a champion is important, it is how the champion can mobilize everyone in the clinic to work together. Even the champion  needs a team to support the efforts. This includes front and back office staff, the clinic manager, nurses and other providers.
  2. Identify physical space for groups. In our group model we chose to run two groups at the same time–one for parents & a separate one for children. This allowed for appropriate knowledge and skills regarding ADHD chronic care for participants. We also wanted a space large enough to allow parents to invite another caregiver or partner, as well as the faciltator.
  3. Determine the frequency of groups.  In our model we chose to offer a new session every 3 months so to coincide with the need for families to come back to the clinic for stimulant prescriptions.  However, we learned from parents that the motivation to come to the groups for the support was more important. Parents were willing to come back every month just for the group. Groups used for parenting support is usually offered weekly; whereas groups for well child visits are overlaid upon the periodicity schedule for health supervision.
  4. Determine the ideal time for groups. In one clinic we offered these appointments consistently at 4:30-5:30pm so to not interfere with school. Another clinic offered it over the lunch hour. In the end, families appreciated the appointments after school for convenience.  It was not uncommon for families to get push back from schools for lunch time group visits since families ended up keeping their children out the entire school day.
  5. Determine a tracking system for families who no-show. Sometimes families just cannot get to the clinic on the day and time the group visit appointments are. Make sure you think through how you will track families who no-show so you can make arrangements for them to follow up. Clinics with electronic medical records could flag group visit appointment days and used a particular group visit template for documentation.
  6. Map out the workflow and assign roles. Consider walking through the process from the family perspective from check-in through check out. This is especially important if the groups are held in a separate space from the clinical exam rooms (for example, a separate conference room).  When will children’s vitals be taken? Take into account if families are being asked to move from one area of the clinic to another. If it makes sense for the medical assistant or nurse to bring scripts to the group after being printed or if you can keep patients in the group space for the duration of the group visit vs. moving families back into individual exam rooms once the group portion ends.
  7. Reminder calls. In our clinics, these were done twice for each visit. In one clinic, one front desk person’s role was to call the day before and the day of; in another clinic, there were automated reminder calls but a few days before a “live” person called the families.
  8. Consider scheduling group visits on a regular basis or at least 6 to 12 months in advance. Families appreciated knowing that the groups were always going to be offered once a month on the 3rd Wednesday of the month. This makes it easier for families and clinic staff. It also makes it easier for parents to plan in advance and take the time off of work or arrange for transportation.
  9. Consider snacks. The children routinely mentioned the snacks were a perk! After school time can be challenging so we offered easy grab and go snacks like granola bars and pretzels.
  10. Have a team huddle the day of a group visit to review expectations and go over logistics.  This is key if the group visits were only 1 or 2 days per month. It was a helpful reminder to all about the logistics of the group visits and allowed for team members to plan ahead.

This was our TOP 10 list of ‘nuts and bolts’ our teams found helpful before implementation of group visits on a system-level. The details will depend on each clinic’s workflow, personnel and populations served. Our curriculum and billing information will be shared in the coming posts.

 

On improving ADHD care

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images

A colleague of mine published an op-ed in the New York Times on February 1, 2016 “Diagnosis is Key to Helping Kids with ADHD.”  As Dr. Froelich states, even though there is strong scientific evidence that ADHD has a biologic basis, there is always concern whether a child truly has ADHD and if it is misdiagnosed or over diagnosed. The issue is that there are currently no medical or laboratory tests that is inexpensive, non-invasive and has good test characteristics to reliably be used as part of every day practice.  We must rely upon a careful behavioral history that includes asking about the home, family and school, collect parent- or teacher-report on behaviors and functioning and think through this while taking into account behavioral observations.

We still have a long way to go to improve upon the decision making process regarding behavioral conditions. There is not the equivalent of a “swab” or laboratory test to tell the pediatrician, parent or teacher that a child definitely has ADHD.  This is, in part, because behaviors are the equivalent of symptoms of any medical condition. Behaviors are what the parents or teachers see and observe. However, not being able to sit still, daydreaming or being forgetful can represent other things about the child (like chronic untreated allergies, anxiety, learning disabilities, poor sleep, or just plain having an “off” day) or may be a reflection of something else going on in the home environment. This is why it is important to explore the the context around the child and understand how the behaviors impact the child’s functioning in the home and school. It takes understanding the patterns and paying attention to the environment in which the child is in to truly begin to understand the “why” of a behavior.

This is why general pediatricians or family practitioners find behavioral conditions so challenging. However, having only 15-20 minutes to address these complex issues and still cover other topics, do a physical exam and give vaccinations is less than optimal. That is why it is important to examine innovative ways to automate some of the screening processes and use health information technology to remind pediatricians of key information. This is also why we have been working towards developing a new model to improve care in busy pediatric clinics. By restructuring the typical brief visit for individuals into an hour long group visit for up to 6 families, pediatric providers not only get to educate and explore these issues with families, but also observe children with others.

There is so much work to do to improve upon diagnosis and ongoing management of pediatric behavioral conditions. Over the next several posts I will be sharing materials we have developed for our group visits (curriculum, handouts and just lessons learned). The group visit is one option that at our institution has led to increased satisfaction for providers and families, despite the systems-level challenges this model requires. Yet, the group visit model may not be for everyone and is not always feasible.  Explaining this to families is important and acknowledging the imperfect methods we have to identify behavioral conditions. It requires being flexible and re-evaluating if a child’s behavior or functioning does not improve. Also, being open to going back to the drawing board and thinking about other conditions that can mimic ADHD. It means partnering with teachers and educators, and other family members to get their impressions on how a child is doing.  Primary care providers are able to develop long-standing relationships over time and build a working partnership with each and every one of their families. This is also why primary care providers are still best equipped to make the initial diagnosis.

I cannot discount the importance of reaching out to the schools and talking to teachers and daycare providers about their concerns. This step is so important, but can be overlooked at times. Input from schools (whether it be through asking educators to complete screening forms or picking up the phone to ask for their opinions) is a vital part of the process, not just to make the diagnosis but also as part of ongoing management.  We are all part of the family’s team: doctors, teachers, behavioral therapists, tutors, with the family at the center.

There is still so much work to be done. Together we can share solutions, brainstorm additional methods or ways that may help decrease the time to diagnosis or ensure the diagnosis a child receives is correct.

 

A new handout for ADHD

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ADHD JIT Revised FINAL

My passion & ongoing research examines innovative ways (e.g. group visit models, health information technology) to engage pediatric providers and families around common developmental-behavioral and psychosocial topics in primary care.  I am a firm believer in improving communication at the point of care.

Carefully designed handouts can be used for clear information exchange, can be shared with other family members and improve parental understanding.  This is one of my newest handouts that focuses on pediatric attention-deficit hyperactivity disorder (ADHD).  It can be used after completing the work-up for ADHD to help families understand what ADHD is, introduce the idea that treatment actually is not just medicine (which is what I find parents are most worried/concerned about), help families understand who is on their team moving forward and includes simple parenting strategies for helping their child. There is also a message that the medical home should be viewed as a resource for the parents for ongoing support and encourages parents to ask questions.

Download a copy of the English version here*: ADHD Informational Handout

Download a copy of the Spanish version here*: ADHD Informational Handout-Spanish

*Please keep the copyright in the lower right hand corner intact.

 

Bringing Visual Communication/Design & Families Together to Improve Health Services Research

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For the past several years, I have been leading a team developing and implementing a group visit model to improve pediatric ADHD chronic care. The idea was to restructure the visit from a traditional 15-20 minute quick follow up to a longer 60 minute group visit followed by a “check in” to refill medications and ensure the child’s growth was adequate. Since 2011 our group has been working hard to design a unique parent and child curriculum to delve deeper into ADHD so that pediatric providers can facilitate conversations with up 6-8 families at a time.  Parents are in one group and the children are in another group that is run concurrently but in separate rooms. Our first study (published in Journal of Developmental & Behavioral Pediatrics, October 2015) showed that parents who attended the first visit reliably came to all subsequent visits and reported improve child functioning in the home compared to families who were assigned to usual care.

We received additional funding to continue this work.  Part of the funds went towards recruiting a patient advisory board (PAB). Working with families affected by ADHD in this capacity has been so rewarding. Granted, I see patients in a behavioral pediatrics clinic where I provide evaluation and support to families. However, engaging families in research in discussions around study design, implementation, and finally to dissemination has truly transformed my approach to research. My ultimate goal was always to improve patient care by engaging families and providers. Prior to working with a PAB, I was operating on the knowledge and expertise I had gathered through the years from my clinical experience, from my mentors and from my research training. I have seen first-hand the value of engaging families to share their expertise of what it is like for them to raise a child with ADHD, what is like for them to consider medications, what it is like for them to get those calls from schools…and to learn truly what matters most when tackling these issues.

Bringing in health communication designers to help translate the stories into products that capture the family voice and weave it into the study process has added a new dimension to the work we do. I love working with creative and fun individuals that have a different and “out of the box” approach by bringing visual design into healthcare.

For example, talking to families about how they wish to learn about our study led to the colorful and bold pamphlets that could be strategically placed in the waiting room to catch parents’ eyes. Parents wanted to come upon the information and be activated to talk to their child’s doctor about joining. Parents  are interested in seeking information but would prefer to take information in, digest and consider before being approached by a research assistant. The brochures functioned to help recruitment efforts by activating families to ask about the ADHD groups.

This is just one example of the benefits of patient engagement and visual health communication and design. I cannot imagine going back to the “old” way of doing things. It has been a rewarding journey thus far and I plan to keep moving forward. brochures