Monthly Archives: April 2010

Children’s from a parent’s perspective

My name is Melissa Winger, the mother of a wonderful son who has multiple medical and developmental needs resulting from a rare and complex chromosome disorder. I look forward to sharing the lessons I have learned navigating the health care system, from the family perspective, both good and bad.

I also want to hear from you, as families, about your experiences.

At Children’s Hospitals and Clinics of Minnesota, I have been involved as a family adviser for 13 years, most of which has involved serving on the Family Advisory Council (FAC). I served as FAC chairwoman for three of those years.

I remember the first time I applied to be a FAC member and on the application was a question that asked (looking for diversity with a goal of having all families that come to Children’s represented), “What do you feel you could bring to the council?” I answered, “I am 19.” When I mailed it off, I thought there was no way they would offer me a seat on the council. Who wants to hear from a 19-year-old mom?

Well, I was wrong and they offered me a seat on the council. I have never stopped sharing my story and experiences, largely because of the positive changes that resulted.

Being a mom of a child with significant needs, Children’s became our second home — over 30 surgeries and procedures and double that of hospitalizations. I had to learn how to effectively navigate the health care system, and to be honest, I do not have it all figured out yet.

I have been able to give input on the design of the Children’s Medical Organizer, an online organizer that I use to organize my son’s records. Through the years I have been a part of many committees and projects at Children’s as the family representative. Currently I work as a Concierge at the Welcome Center on both the St. Paul and Minneapolis hospital campuses.

I look forward to sharing with you some of the things I’ve learned or wish I had known, and I want to learn from you, too. What questions do you have about Children’s that I could offer my perspective, as a mother who has spent a lot of time there with her son, on?

Patient-Centered Care

Dr. Phil Kibort Last month, my father-in-law fainted in a restaurant, and we thought he might be having a stroke. He required an ambulance drive over to one of the local hospitals. The police were great, the EMT was great, and the fire department was great, as were the admitting people in the emergency department and every one of the people over at the hospital. The amount of workup he received was unbelievable for someone who was probably just fainting.

He had an emergent CAT scan, an MRI and a chest X-ray. Eventually he stayed overnight to get a echocardiogram plus more lab tests. All in all he was probably somewhat dehydrated that morning, took his antihypertensive pills, dropped his blood pressure, had a drink and pretty much keeled over.

I’m not here to discuss the amount of resources used, because, of course it was my father-in-law — and it didn’t help that besides me, his other son-in-law was an internist in the same hospital and his three daughters are a psychologist, an epidemiologist and an occupational therapist. Everybody in the ED room was so health-oriented, I think the ED felt they had to do everything possible.

What I really thought about during this episode was not so much the great care they all gave, but rather the claim that hospitals have that they are patient-centered.  The attending physician, after receiving the handoff from the ED physician via electronic medical record (I was very impressed), came into the room and explained the results of the CT scan. This very bright woman explained to my father-in-law, who is not medically oriented, the findings of the CT scan. She used so many medical terms that I had to ask her to stop and tell her that “he has no clue what you are talking about. Speak in layman’s terms.” Sometimes we get so caught up in trying to tell patients technical things that we forget that unless you speak their language, it is difficult to understand.

I’ve been reading much lately by Dr. Charles Denham and, of course, Dr. Donald Berwick about being patient centered extremists. They believe that patient and family involvement starts with educating patients and families and ends with listening to them and taking them seriously.  Patient-centered care means that patient and family input is emphatically built into systems of performance improvement and if patients and families are taken seriously as real experts, and are respected for their valuable perspective of how care can be improved, then organizations can improve at improving.

Denham would say, “leaders drive values, values drive behaviors, and behaviors drive performance.” Engaged leaders need to provide the resources necessary to ensure that the systems are in place.  They need to guarantee that vital patient and family input are built into the practices adopted, leadership resources and systems.

We as leaders need to constantly remind staff and each other that the people whose lives we are guests in deserve us to speak in languages they understand.  Safe, high-quality health care is neither accidental nor static, according to Denham. Rather, it is the result of deliberate actions by dedicated people, including active listening, planning, implementation, and evaluation by organizational leaders and providers of care within their healthcare enterprise.”

Denham also says the culture is the collective behaviors of an organization, or what some have described as “what people do when no one else is looking.” It reflects the operational values of the organization, which may not necessarily be those espoused in brochures or walls in the lobby.

We’re doing better, but we can do much better. The final icing on the cake has to do with us treating patients and families respectfully, using their knowledge, and speaking to them in languages that they can understand.

Phil Kibort, MD, is Children’s vice president of medical affairs and chief medical officer. Read his bio here.

Healing with Play: Having Fun and Teaching Self-Care Skills To Kids Who Are Overweight

Playing WiiI read about an upcoming lecture at the Walker Art Center in Minneapolis that involves a discussion by a developmental psychologist who has worked with the Lego Corporation about the therapeutic benefits of play in childhood. It makes me think that we should do a better job in general of creating treatments for kids who don’t have to seem so much like “therapy” or “medicine,” but rather that seem like fun.

Toy and media companies like Nintendo, Sony, Microsoft and Apple have certainly figured out how get kids to play with their products, but few of them have designed products with therapeutic benefits.  Helping kids to get healthy, physically fit and lose weight is a good example of a challenging area where we could use some multimedia, fun treatments. Although the American Academy of Pediatrics and other groups have come up with some excellent information about the prevention, assessment and treatment of obesity, it all seems a bit “dry” to me in terms of actual day-to-day practice.

Also, beyond physical activity and nutrition changes, addressing the mood, self-esteem and stress issues that often plaque overweight kids is of critical importance. I struggle with finding ways to help kids and teens feel motivated, interested and excited enough to want to follow through and change. There is hope — a relatively low-tech approach that was successful in helping kids lose weight in a recent study involved simply having overweight kids read a fictional story about another kid who was struggling with obesity.

Products like Nintendo’s Wii Fit are a good start. It would be pretty amazing if more toy companies turned some attention to creating “therapeutic toys” — toys and activities with a defined therapeutic benefit (stress management, weight loss, physical fitness, better sleep, etc.) that are designed so well that the kids don’t even need to know about the therapeutic benefit. Clinicians would love this.

A few products and companies are trying to get there, but the road has been slow. Many kids experience “emotional overeating” because of stress. Here some products that begin to address exercise and stress for kids:

  • Wild Divine makes computer games for stress management. Overweight kids need to get active, but need engaging and time-efficient tools.
  • Me Moves is a new product that makes a cool product combining music and tai-chi like movements for kids, soon to be available as an iTouch application.
  • Yoga Kids has some fun practice books and DVD’s for kids to learn Yoga at home.
  • Some kids with obesity have related issues with sleep. A Minnesota  company, The Shrunks, also makes some fun kits including plush toys and colorful gadgets to help kids sleep better.
  • Local resources for kids and families to coach them on healthy lifestyles include the LiveWell Fitness Center at Abbot Northwestern Hospital in Minneapolis and the IEMPHIT group for kids in St. Paul as well as our Physical Therapy team here at Children’s.

Continue reading

You’ve Improved!

Eating VegetablesThere was a time in my childhood when I had gained a bit of weight. Yesterday, browsing through the faded photographs, I tried to imagine how today’s American pediatricians might respond upon seeing my own heavier image as a child. Most would almost certainly find me overweight, perhaps counsel my parents about exercise and healthier eating. The way it was, my pediatrician back then – in mid-1970s Former Yugoslavia – playfully pinched my cheek and exclaimed, “You’ve improved!” She was not joking. She really meant I looked better, healthier.

I reveal this personal story to point out how our values about body image, including obesity, are socially defined. Throughout much of human history, and certainly still in many cultures and countries of the world today, being “over”weight is actually preferred to being skinny. Many people don’t view extra weight as a health concern – just the opposite! For example, in a place where hunger has been omnipresent in the recent past, a larger body may still be viewed as a sign of good health, good fortune, strength and attractiveness.

When it comes to body size, large or small, poverty has always been a defining factor. Historically, having a lower income often meant you suffered food deprivation and malnourishment. If you were poor throughout much of human history, chances are you were engaged in hard physical labor, all the while experiencing a shortage of food.

In recent times, a counterintuitive reversal of that historical pattern has occurred, particularly in societies such as ours where food has become plentiful and cheap. The “new” pattern is that poverty actually leads to obesity. Studies show that the likelihood of being overweight in the poorest 25% of the population is twice that of people in the wealthiest 25% of the population. Children living in poverty have limited access to healthy foods and greater exposure to high-calorie and fatty “junk” food. Supermarkets are scarce in poor areas and the gap is usually filled with fast food restaurants and convenience stores.

If I were poor, I might also have a harder time being physically active. I might not have discretionary income to join a health club. My neighborhood may not be safe or otherwise conducive to exercise, or I may have to hold two or even three low-wage jobs to support my family, leaving me with little or no leisure time. My child’s school may lack the necessary facilities and have fewer organized sports. Neighborhood safety issues might prevent students from walking or biking to school.

In sum, there are many social and economic conditions that play a defining role in children’s health, including childhood obesity.

Trying to change the behavior and choices at the level of an individual child and family is certainly necessary. However, solutions to such intractable socioeconomic problems as overweight in children must go beyond that. They must include interventions at the level of these same social and economic conditions that are the root causes of poor health.

Children’s healthcare organizations such as Children’s Hospitals and Clinics of Minnesota are uniquely positioned as leaders of multilevel changes necessary to achieve health in children. Our substantial clinical expertise is at its highest impact when it’s leveraged through community partnerships and positive influence on policy and systems change.

A creative recent example of community partnership that comes to mind is a small urban garden program that Children’s TAMS ran last summer.  Six young people worked with a Latino Health Educator to plan, plant, tend, harvest, cook and enjoy the fresh food that they grew themselves in a community garden plot in our neighborhood.  It engaged these youth in healthy physical activity and community connectedness, while teaching them life-long skills that promote healthy behavior.   The program was based on the innovative local Youth Farm and Market Project.

Boris Kalanj is the Director of Health Care Equity and Cultural Competence at Children’s Hospitals and Clinics of Minnesota. Read his bio.

Are you sick? You should be.

Stethoscope Did you ever notice that if you watch commercials, 50% of them seem to be oriented to some medical problem? Heck, if you watch the nightly news, 90% of the commercials have to do with some medical problem. Whether your leg is restless, you have ED, ADD, OCD, constipation, diarrhea, severe menstrual cramps, headaches, backaches, bloating, allergies, acid reflux, asthma, emphysema, or you need a wheelchair, you can’t get by without some drug.

I’m beginning to believe that to be normal you have to have an illness. In fact, I doubt there is anybody out there right now who doesn’t have something that they would consider a chronic problem. Now I’m not saying this to be cynical about the people with “real organic illnesses” and many of these other things are symptomatic and real, but at some point we have to ask ourselves, is there any symptom we have that we don’t think about as being a disease? What does it say about our society? What does it say about what we teach our children?

Perhaps this is another reason why health care costs continue to rise when everybody says they need to feel great and perfect at all times. Just my thoughts for the week and now I need to get my knee looked at by my orthopedist.

Phil Kibort, MD, is Children’s vice president of medical affairs and chief medical officer. Read his bio here.

I love working with teenagers

“I see no hope for the future of our people if they are dependent on the frivolous youth of today, for certainly all youth are reckless beyond words. When I was a boy, we were taught to be discrete and respectful of elders, but the present youth are exceedingly wise and impatient of restraint.”

Emily Scribner-O'Pray While these words could have been written today, they are in fact attributed to Hesiod, who is said to have written them in the 8th century B.C. Society’s fear and frustration with our young people has been with us for – literally – thousands of years. If you were to pick up the newspaper or watch T.V as a way to find out about the current generation of young people, you would find a bleak picture, a tale of a generation that is self-centered, materialistic, irresponsible, disrespectful, violent and uneducated. My experience of young people today, however, couldn’t be further from this depressing image.

I love teenagers. For real! I find them to be highly creative, funny, honest, direct, hardworking, connected, funny, passionate, energetic, caring, funny, open-minded, and involved. And did I mention funny? Definitely funny. They always win me over with the funny.

This turns out to be a good thing, because I’m the Community Services Supervisor at Teenage Medical Service, also known as TAMS. TAMS is Children’s very own teen clinic, and we’re located in a renovated, comfortable Victorian house just a block north of Children’s Hospital in Minneapolis. TAMS provides expert medical and mental health care for about 2,000 young people ages 10 to 22 each year and works with local schools and community agencies to ensure that young people and their parents have the skills and knowledge to stay healthy.

I feel lucky to have worked at TAMS for the past 11 years. At TAMS, teens find what they want and need most from their health care providers – respectful, non-judgmental care. I am proud to say that the TAMS staff does an amazing job of providing an atmosphere that is welcoming to teens, from the front desk to the nurses, to the medical providers and the lab techs. I tell teens that everyone who works at TAMS works there because they really like young people. It’s apparent, every time a new patient walks through the door.

I’m also the parent of a 13-year-old daughter and an 11-year-old son, so after 20 years of Youth Work I now get to experience the joy of parenting teens firsthand. And believe it or not, I’m actually looking forward to it!

As a writer for the Kids’ Health Blog, I hope to discuss topics related to teens, health care and parenting. I find that so many parents had great support parenting younger children but have a harder time finding help for navigating the teen years. It is a time of life that can be highly stressful and sometimes the rewards don’t come until kids are older. Whether it’s talking to kids about sex, finding ways to stay connected, dealing with the volatility of moods or worrying about some of the alarming statistics that are in the news about STDs, teen violence and drug use, parents of teens have a big job to do. I hope to provide support and perspective here to help.

What do you worry about most with your teens? What topics would you like to see discussed on the Kid’s Health Blog related to teens? My experience is that the best advice comes from other parents so I would love to see active discussions in the comment section.

Help me help you, and win a free cookbook for your kids

Recently, I saw a 7-year-old patient who weighed more than I do. The family did not understand that their child was overweight. They all ate potato chips during our visit at 10 a.m.

I am certain that this patient will be a 300 lb adult with hypertension, type 2 diabetes mellitus, and early coronary artery disease, who will be hospitalized numerous times as an adult and be an over-consumer of health care.

By 7 years old, this child’s path has nearly been set.  This patient has developed all the wrong eating patterns, is eating the wrong foods, and is drinking the wrong beverages.  Food has a different meaning for this child than it does for other children.  She has the wrong priority for exercise, the wrong life balance.

Yes, I have failed this child, despite numerous attempts.  The time to intervene is as eating starts, right at the initiation of solids, right when families are using food as a reward, right when children will eat whatever parents will give them. Right then is the time to get it right.

Looking for ways to teach your kids about healthy eating? Here are some kid-friendly recipes from our new ChowKids Cookbook from chef Brenda Langton of Spoonriver. How have you taught your kids about eating right? Be one of the first three readers to share your idea or kid-friendly recipe below, and we’ll send you your very own copy of the ChowKids Cookbook! (Update: We loved the responses we got, and we have a few more cookbooks to give away. Share your recipes/ideas and you could win one!)

Gigi Chawla, MD, is the Chief of Staff at Children’s Hospitals and Clinics of Minnesota. Read more about her here.

Being a grandpa cool enough to blog

Social Networking When I was asked to be part of the Children’s blog, I got very excited thinking, wow, I’m now one of those up-to-date type of managers. Even as a grandfather, I could be cool because I have a blog. The fact that I even understand some of the manifestations of social media is a little bit mind-blowing (an old term by the way).

When I told my adult children I had a blog and asked if they would read it, my oldest son, a Generation Xer of 32 years of age, sent me the definition from Urban Dictionary (by the way, a site that I highly recommend). Under Urban Dictionary the definition of blogger is:

“Term used to describe anyone with enough time or narcissism to document every tedious bit of minutia filling their uneventful lives. Possibly the most annoying thing about bloggers is the sense of self-importance they get after even the most modest of publicity. Sometimes it takes as little as a referral on a more popular blogger’s website to set the lesser blogger’s ego into orbit.” – Maddox

Well, as soon as I saw this I realized it wasn’t dissimilar from my own feelings when people ask me if I’ve seen their Facebook and read their recent writings. I once told my sister-in-law that while I love her dearly, seeing her 6 to 8 times a year is enough and I don’t need to know what she is doing every day.

Nevertheless, social media is here to stay whether it is Facebook, YouTube, Twitter or the blogs. Rather than being afraid of it, one needs to realize that it is just another technological advancement no different than telephones, the Internet, email, etc. Each one of these modalities just continued to do what the previous one did: allow people to network with others who they consider friends or think similarly to communicate with each other.

Even by the time I write this blog there will probably be some new technology out there that my children will have already started using. Since I realize they don’t call me back and hardly ever respond to emails anymore, I won’t find out immediately. If I’m not texting or tweeting, I’m just not with it.

I bring this up because from a management standpoint, one has to know what the next generations use, think or value if we are to have any success in getting things accomplished. That is, we have to know what technology to use.

In the New York Times on March 14, there was a small article in the paper about a professor and other teachers taking away cell phones and computers for one week from their students to see what they’d be able to do without them. For most, it was a major struggle. For me, not having my Blackberry would be a major struggle. Nevertheless, they are here and there will be more and for those of us who want to work with other young doctors and other young staff, we will have to learn to adapt to them and with them. Tweet away.

Why do you think it’s important for health care professionals to stay on top of new communication trends?

Phillip M. Kibort, MD, MBA, is the Vice President Medical Affairs/Chief Medical Officer at Children’s Hospitals and Clinics of Minnesota. Read Phil’s full bio.