Tag Archives: Patient and Family Engagement

10 Steps for Benching Bullying

Tom Dahlborg
Tom Dahlborg

In the January 2013 NICHQ Leadership message Beyond Bullying, I shared that 42 percent of children in a Yale Rudd Center study reported being bullied by physical education teachers and sports coaches. Yes, 42 percent! Quite frankly I was shocked at this statistic.

That said, another study found that 45 percent of children “said their coaches called them names, insulted them or verbally abused them” and another study, this one from the United Kingdom, found that 25 percent of 6,000 young adults reported that they suffered emotional harm at the hands of their coaches.

Just think about that for a moment. Depending on the study, between 25 to 45 percent of our children who play sports are falling victim to a coach who is habitually cruel and abusing them. Let that really sink in. Up to almost half our children who play sports are being abused by coaches.

As Nancy Swigonski, MD, MPH, associate professor at Indiana University’s School of Medicine, has noted in her piece in the journal of Pediatrics, the damage these coaches are doing to our children is devastating and can be everlasting. “It can impair social and emotional development and cause substantial harm to mental health.”

As noted in Charlie Homer’s recent blog about NICHQ’s name change, there are many broader influences that affect children’s health outside of the clinical setting. This certainly includes the bullying that happens on our ball fields that can lead to physical injury, social problems, emotional problems, mental health problems (e.g., depression, anxiety), and even death. Not to mention bullying can turn children off from physical activities and this can potentially lead to obesity. As an organization that aims for all children to achieve their optimal health, there is much work to be done…together.

So what can parents do?

  1. Interview the coach and his/her staff. Ask about philosophy, priorities, playing time, values and also ask how he/she measures the outcomes of each.
  2. If your child is already on the team and you have concerns, ask your child about his/her experiences, the messages that are being sent, and follow each path your child raises a concern about.
  3. Inquire of other parents who currently or perhaps who previously had children on the team.
  4. Look for red flags: According to Kody Moffatt, MD, a pediatrician in Omaha and executive committee member of the Council on Sports Medicine and Fitness for the American Academy of Pediatrics, the number one red flag is a coach who wants “closed practices” where parents and other adults are barred from the practice. “That may be innocent, but as a pediatrician, a parent and a coach, I don’t think any coach should tell an adolescent not to tell another adult something.”
  5. Be sure to attend (or perhaps rotate with other trusted adults) your child’s practices.
  6. If you notice bullying behavior, document it and include specifics.
  7. Identify and map behaviors to team, school and/or league codes of conduct. Use this as a tool to share very specific examples of your concerns.
  8. Address your concerns directly with the coach. Focus on the impact on the children and be specific.
  9. If discussion with the coach is unsuccessful, reach out to the athletic director, school officials (if school based program), and/or league officials, and share your findings. NOTE: It is absolutely crucial to make note of how the coach is treating your child AND it is also critical to keep an eye out for how the other children are being treated as well. These are our communities and regardless of whom the child is these behaviors are unacceptable and it is incumbent upon us all to speak up for those who cannot do so for themselves and make a difference.
  10. Ensure that you also focus on developing warm family relationships and positive home environments so that if your child is bullied the negative outcomes from the bullying will be minimized. According to the study “Families promote emotional and behavioural resilience to bullying: evidence of an environmental effort” published in the Journal of Child Psychology and Psychiatry, “Warm family relationships and positive home environments help to buffer children from the negative outcomes associated with bullying victimization.”

Bullying is harmful and can lead to tragic ends. Together with these 10 steps we can identify it, stop it, mitigate its impacts, and help our children achieve their optimal health—mental and physical.

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Systems Level Healthcare Improvement Starts with Individual Relationships

Tom Dahlborg
Tom Dahlborg

Recently, I was invited to a meeting of experts to discuss how best to improve patient and family engagement in healthcare at a system level.

As I walked in to the meeting room, I was pleased to see I was slated to sit next to the meeting co-chair, who I had met previously and wanted to get to know even better. As I walked out to stow my luggage, one of the meeting coordinators approached me and let me know that they were moving me because another individual required access to a plug (which happened to be right behind the seat I was initially assigned to).  Oh well I thought … I will simply connect with the co-chair later in the day.

Interesting how fate works.

Shortly thereafter I realized I would be sitting next to a brilliant patient advocate, who also happens to have a chronic degenerative neurological disease. (I will refer to him as Neal.) And throughout the day, Neal showed all of the following symptoms of the disease:

  • Tremors
  • Bradykinesia
  • Rigid muscles
  • Impaired posture and balance
  • Loss of automatic movements
  • Speech challenges

As the meeting began, I became aware of Neal’s breakfast. How he appeared to struggle with his fruit. How the juice cup in his hand flailed precariously close to being dumped on him, on me, and/or on the table. And I realized I had no idea how to help. I had no idea whether Neal wanted help. Would I offend him by offering help? What was Neal’s preference?

As the day went on, Neal confided in me that he was getting tired and I noted his symptoms worsening. He stood up abruptly and his chair, which was on wheels, flew backward so I grabbed it and held it for him. I saw him stumble and thought he would fall so I reached out and held his arm.  Neal brought out a pill container and I thought he was having some difficulty extracting his pills, but decided to hold off at first on offering assistance. Again, I wasn’t sure what he would want and whether he was finding my persistent questioning, e.g., “Can I help you?” “How can I assist?” “Can I get that for you?” bothersome. He retrieved his pills on his own. He then began to lean toward me and I asked again “can I help you,” but received no answer.

A bit later Neal handed me a can of soda and asked me to open it for him, which I was happy to do. And yet as I did so I noticed he also had a cup of ice and based on what I was witnessing I was thinking there was no way he would be able to pour the drink into his cup without spilling. And as I was about to ask him if he wanted me to do it (feeling more comfortable after a number of hours together), Neal leaned over to me and asked me to do so for him.

It’s interesting what thoughts go through your mind during these times.

Feeling that at any moment I could be wearing Neal’s drink, I made a pact with myself that if it does happen I will not show any manifestation of being startled, I will not immediately get up and go clean my suit, but rather I will take it in stride and ensure that I do not cause any sort of scene which would adversely impact Neal. Or, in other words, I will do my best to treat Neal how I would want to be treated in lieu of not truly knowing Neal and his preferences.

At the end of a long day I noticed Neal circling me. He came near and then circled away. He came near and then stumbled (and I supported him) and then circled away again. He then stopped nearby and we made eye contact and he simply said, “Tom, I want to shake your hand,” which we did and I responded, “Neal, it was so great to meet you.”

During a long commute home I continued to process these events.

I was blessed to be sitting with my new colleague. I was fortunate to be further reminded throughout the day of how important it is to develop relationships, to develop trust, to share openly and honestly, and to understand one another’s whole story, preferences, goals, desires, and so much more … and especially so in healthcare. I learned that the more I got to know Neal and understand his preferences the better I felt and the better I was able to respond accordingly and meet his needs more effectively.

Want to improve the healthcare system from a systems perspective?

Develop systems which allow for time, continuity, relationship, trust, authentic sharing, the telling and hearing of the patient’s whole story at each healthcare encounter. Create system change which positions clinicians to use tools such as emotional intelligence and motivational interviewing to ensure optimal sharing and comprehension. And not only collect data from these encounters, but rather turn the data into information and the information into wisdom by co-creating with the patient and family care pathways that are 100 percent aligned with the now understood preferences of the patient. Lastly, develop systems which track progress toward achievement of the co-created care plan (measure the impact).

If we are going to truly

  • engage patients and families,
  • improve patient satisfaction, engagement, activation,
  • improve clinician satisfaction and retention,
  • ensure resources are not wasted (save healthcare dollars), and
  • profoundly change and improve the healthcare system,

then we must.

Yes, Neal, it was so great to meet you. Thank you for allowing me the opportunity to learn from you.

Removing the Burden of Care Coordination

Originally posted July 2013.

Cindy Hutter
Cindy Hutter

The Sunday after Thanksgiving 2005, I woke up in the middle of the night with sharp pains in my stomach. Growing up, the universal remedy for nearly everything in our household was Pepto-Bismol. At 26, that still stuck with me. I took a slug from the glorious pink bottle that maintained a reserved spot in the refrigerator door rack and went back to bed.

Within 20 minutes I was up again, hunched over in pain and nudging my then-fiancée, Steve, to wake up. I tend to have a high tolerance for pain. I’ve finished a half marathon with a nagging pain in my knee that turned out to be several sprained ligaments. When I told Steve I needed to go to the hospital, we both knew something was amiss.

My first thought was my appendix had burst. I was wrong, very wrong. I had a cyst the size of a softball on my left ovary and it had ruptured. I had emergency surgery to remove the cyst. A week later, when the pathology came back, I got my diagnosis. I had ovarian cancer.

Ovarian cancer is known as the silent killer, mainly because there are no good tests to detect the disease and symptoms typically don’t present themselves until the cancer has spread. The cancer is most commonly diagnosed in elderly women for whom life expectancy after diagnosis is not very good. Since it is rare to get the disease at a young age, protocols for long-term, post treatment care plans are nonexistent.

After a second surgery to remove my left ovary and all signs of the cancer, I met with my surgeon a few times for follow-up and then she was off to save others with her scalpel, as she should be. Now what? I wasn’t sure how and by whom my follow-up care would be managed.

Typically very healthy, I didn’t see my primary care physician frequently enough to develop a relationship. And since I had been to the gynecologist for a checkup just weeks prior to the cyst rupturing, I had little confidence in her ability to oversee my long-term care. I felt like a foreigner alone in an unknown land and the only things in my suitcase were the names of a few high-risk gynecologists and a copy of my medical record.

This experience, plus now my work at NICHQ, has caused me to think about the issues of patient advocacy, medical care transition and coordination in a new light. Patients (and their families) are too often burdened with the responsibility of being their own advocates. This is especially true for patients with special healthcare needs and when young adults transition out of pediatric care, both of which were true in my case. I had never heard of the concept of a medical home before coming to NICHQ, but I’ve now seen what is possible in a patient-focused system where primary care physicians and specialists coordinate to deliver high-quality healthcare. In situations like mine, where there are no established protocols to follow, the need for a medical home is most critical—and paradoxically, most lacking.

Since joining NICHQ last year, I’ve seen our various project teams tackle these intertwined issues. In our medical home project, teams of pediatric offices have been testing and now implementing best practices for transitioning patients to adult practices. This is helping to close the gap in care many young adults experience when they age out of a pediatric practice, which can be particularly problematic for patients with health issues like autism, sickle cell disease and others. In another project, NICHQ and its partners are piloting guidelines for bridging childhood and adult care for sickle cell patients by teaching adolescents to be advocates for their own care coordination in the absence of (or in addition to) a medical home. And NICHQ’s autism project is addressing how to coordinate follow-up care with community physicians to remove some of the burden from overwhelmed specialty clinics. Across these and other projects, teams are introducing patient navigator programs and additional innovations to provide assistance to those who need help managing the healthcare system and to better support a medical home model.

I find hope in this work. By transforming into medical homes, practices are improving the ways care providers interact to provide holistic care to patients. As a result, a child born today with sickle cell disease is more likely to have a smooth transition to adult care and the family of a child diagnosed with autism will more easily find a primary care doctor who is versed in relevant treatment guidelines. And hopefully, as this work continues to spread, people with any type of special healthcare need will more easily find a way to a long-term care plan and a supportive team.

Fortunately, my story has a happy ending. After a few failed attempts, I found a gynecologist that I love and trust. We’re managing my care together, making up the rulebook as we go. We make sure I have checkups every six months and follow a treatment regimen. And when I’m ready, we’ll start the discussion of considering some proactive surgery to limit my odds of recurrence. One thing, however, that we no longer talk about is my fertility concerns. Steve and I are expecting our first child in October.

Beyond Bullying

Contributed by Tom Dahlborg
Vice President for Strategy and Project Director.
Originally posted January 2013.

Tom Dahlborg
Tom Dahlborg

In the online December issue of Pediatrics, researchers from the Rudd Center for Food Policy and Obesity at Yale University recently shared outcomes from their study, “Youth Seeking Weight Loss Treatment Report Bullying by Those They Trust.”

The study design included a survey of adolescents to better understand bullying behaviors, including the location, frequency, duration and types of bullies involved.

The study found that:

  • 64 percent of those surveyed reported getting bullied at school (with the risk of bullying increasing relative to the child’s body weight).
  • Most of the kids suffered bullying for at least one year (78 percent) while over a third (36 percent) had been dealing with bullying for five years.
  • The most common bullies involved were the child’s peers (92 percent) and even those kids that they considered friends (70 percent).

But one of the most disturbing findings to me is the fact that these children also report being bullied by physical education teachers and sports coaches (42%), parents (37%) and classroom teachers (27%).

I should not be so surprised. I have personally encounted an incident of an adult bullying a child I know well, but until I read this study, I assumed that event was an aberration and that bullying of this kind was nowhere near as prevalent as highlighted in this study.

About 12 years ago we lived in a picturesque community on the coast in what seemed the ideal neighborhood.

In this neighborhood lived a five-year-old boy who was overweight. He loved to run, play and have fun, and one day he was outside playing with some of the other neighborhood children when they all decided to go inside a neighbor’s home. As they walked up to the door the mother of one of the boys greeted them and let them in one by one until she saw this child and yelled, “You are too big to come in and play. Go home!”

This would be devastating to anyone, never mind a five-year-old child. The tears and the pain he felt were heartbreaking. As was the pain felt by his parents. And the impact of this bullying along with many other examples this child endured in this neighborhood lasts to this day.

Now contrast this experience with one I witnessed repeatedly at a dance class for young children in the same community at around the same time. The dance instructor truly connected with each of the children in her class. She set expectations, she encouraged, she shared compassion and empathy for those challenged to perform and honored these children for their individual gifts, regardless of their body types.

My daughter was one of the lucky children in that class. She began dancing at a very young age and developed a special relationship with this teacher, a bond and a trust which she cherishes to this day. Years later, now as a college freshman, she has decided to continue to dance as part of a healthy lifestyle. She has taken it upon herself to research schools of dance and to fund the program of her choice.

My daughter loves exercising (with dance being at the top of the list) and maintains a healthy body image, self-esteem level and perspective on life, thanks in large part to the influence of this teacher from years ago.

Quite a dichotomy between the neighbor’s approach with the five-year-old boy and the dance instructor’s approach to her students…and both will have lasting influence on these children.

Now that I have the opportunity to work for a quality improvement organization with a vision of ensuring each child achieves his or her optimal health, and to process this information through the lens of my own experiences (personal and professional), my heart still breaks for those children harmed by bullying…AND I see great opportunities for improvement:

  • To meet children where they are while also educating adults as to the impact we can all have on children (both positive and negative).
  • To bring this perspective to healthcare and expand current thinking around patient-centeredness (child-centeredness) and the patient-centered medical home.
  • To evolve the medical home concept to a neighborhood perspective where patients and families, neighbors and friends, and coaches and teachers are all engaged to learn and grow and help the children of a community achieve their optimal health (by addressing bullying at all levels as well as many other barriers to children’s safety and optimal health).
  • To ensure that each child is recognized as unique, and receives appropriate interventions and support that will best position the child to achieve his or her optimal health.

NICHQ has helped lead the patient-centered medical home evolution since the 1990s and continues to do so. Currently, the US healthcare system is struggling with optimizing behavioral health integration into the medical home. We must continue our improvement efforts and to evolve and expand our thinking in this arena even more.

These are invigorating times to be working in healthcare quality improvement with a focus on children. We have a great opportunity to change communities for the better through evolved medical home concepts and I am excited to be part of this ongoing work as NICHQ continues to lead the way.

As a healthcare leader, a coach, a friend, a husband and a father, I have seen the positive impact we can have on children from both a systemic perspective and on a one-to-one basis. At NICHQ I am blessed with an opportunity to do both.