ImproveCareNow Parents


Stacy’s EEN Story

My son was on EEN for about 5 weeks then switched to about 80% EN, 20% food. This was 4 years ago when he was 11 years old. We live in Los Angeles, and we did not have a lot of support when we started. I hope care teams realize how hard it is in the beginning but it does get easier. Patients and their families need a lot of support from figuring out where to get the supplies, how to work the equipment and most importantly help for the child in placing the NG tube. The best thing would be to have the family connect with another family who is already using EEN.


Parent Working Group Year in Review

As 2015 ends I can say the year was nothing short of remarkable. The Parent Working Group (PWG) grew, accomplished and got stronger. The fall Community Conference was a high point for parent participation. My first conference was in October 2012 where 18 parents attended. This year our numbers swelled to nearly 50. Participation on our monthly calls has increased 50% in six months. This growth speaks directly to the partnership between the ImproveCareNow Network and parents.


Curators, Bridge Builders, and Advocates

Much about Thanksgiving is the same year to year. People come together with friends and family and community, often enjoying a large meal together, and spending the day doing something meaningful—whether doing community service; watching football; or sitting around talking, telling stories, and recovering from the large meal. But while many things about this day of togetherness and gratitude remain constant each year, our personal roles may shift. Sometimes we host the meal at our home. We are the “leaders” for the day, developing the menu, doing most of the cooking, deciding when the group will eat, assigning tasks in the kitchen, and choosing which football game will be on. Other times, we are a guest in someone’s home, often traveling some distance, we are told which side dish to bring, when to arrive, and which activities are planned for the day. Sometimes we are grateful to play a supporting role in the production, and other times it can be hard to sit back and watch events unfold differently than they would if we were in charge. Maybe the mashed potatoes don’t taste just like our Thanksgiving memories, maybe our family always took a walk after eating and we’re antsy to do the same, and maybe the wrong football game is on TV (or we just can’t stand watching football at all).  Or maybe it’s just perfect—just the break we needed from running the show – and we bask in the glow of learning new ways of doing things and watching others shine.


Project WOW (Wear an Ostomy for the Weekend)

Wear an Ostomy for the Weekend Supplies at ImproveCareNow Community ConferenceProject WOW (Wear an Ostomy for the Weekend) was created to help the ImproveCareNow Community learn more about what patients wearing ostomies go through on a daily basis. The Parent Working Group (PWG) and Patient Advisory Council (PAC) wanted to create a learning opportunity where we could work together. We knew this project would only give a snapshot of what patients go through because participants wouldn't have had surgery and the ostomy wouldn't be functional. But we still believed it would be powerful because participants would be learning from perspective, spending some time "walking in patients' shoes", which is something often times difficult to accomplish and not easily seen.


Notes from the Field: Front Desk Staff Key to Patient Partnership

This experience was shared during an ImproveCareNow webinar by Cindy Gessouroun. I enjoyed her story so much, I asked her to share it here on LOOP. It's a simple, yet powerful example of how much we can accomplish together when we involve every person across the spectrum of care. I hope Cindy and Kim's story will be an inspiration, and that others will share their lessons about how best to identify and build relationships with patient and parent improvement partners!




The IBD team at Oklahoma University GI clinic was trying to identify parents to join our team. We asked providers for suggestions. We invited a few parents. We had an education day hoping to identify “interested’ parents at that event…however we continued to be without a parent partner. Kim, our front desk receptionist, attended her first Community Conference (CC) in Spring 2015. At our QI TEAM meeting after the CC she said, “I can find you parents!” She identified and invited 3 parents with whom she had formed a relationship throughout the years and who stood out to her as “potential involved partners”. After her phone calls she notified the research coordinator that ALL 3 parents said YES and showed up at the next meeting. Since then, they have stayed engaged and are slowly becoming partners with our TEAM. She had wonderful insight and her personal invitation must have been a good one!

 

 


Parker’s Race - The Finish Line is Just the Beginning

On a journey of 26.2 miles, the first step is the hardest. I shared the first chapter of Parker’s story in May. If you read it you know that the first step for Keri, Parker’s mom, was asking the question “how can I get more involved in his care?” From there Keri and I began building partnerships between her family, the UVM Children’s Hospital and ImproveCareNow. Every step we took was aimed at helping Keri cross the finish line with her relay team at the Vermont City Marathon to raise awareness of Crohn’s disease and funding to support our hospital.

 

Keri and her sons in their Crushing Crohn's & Colitis tee shirts at the Vermont City MarathonKeri’s enthusiasm and drive to succeed is contagious. Not only is she a busy working mom of two boys, but she committed herself to running a relay in a marathon on top of it all. If you’ve followed ImproveCareNow, you may have already heard the network refer to the African proverb: “To go fast, go alone; to go far, go together.” That proverb feels particularly applicable in this case. This solo sprint, soon became a marathon we took together. It was through partnerships we formed that Keri and I were able to accomplish so much in a very short time.

 

This project was not only a collaboration between a parent and a care center, but also the ImproveCareNow Network and their Engagement Team. They helped us lace up our shoes and got us on the starting line. They provided us with the tools necessary to be successful in this journey. Keri had one thing in mind when she started out on this journey and that was to give back to the people that give so much to her son. “The 360 degree support we have received has been amazing. I wanted to support our local team and ICN team because they are the reason we are where we are today. If it was not for the constant caring and support of the entire network, it would be a very scary place to be. From the moment of diagnosis, they have been there every step of the way”.

 

When Keri asked to get more involved, we were basically starting from square one. There was no precedent for this kind of joint project. But we very quickly tapped into the collective experiences of the ImproveCareNow Network through their engagement team and almost immediately started our Booster campaign. Our campaign had many different purposes. Not only was it designed to raise funds for the UVM Children’s Hospital, and to raise awareness about IBD, but it was also to support Parker. “His "marathon" is much longer than mine, and thinking of him every step of the way, is one more step closer to finding a cure.  I hope that this is something we can continue to grow and have him become more of an influence as he gets older”.

 

Parker and Magen at the Vermont City MarathonWe designed the tee-shirts and then had a mere three weeks to sell them prior to the marathon. Emails were sent, Facebook posts were shared, and Grandmothers were called; no corners were cut when it came to showing Parker how many people care about him and support him as he battles this disease. Within those three weeks we brought together a community. It started with a question and an idea; and together we brought it to life one step at a time (which, incidentally, is a lot like how the ImproveCareNow Network started.)

 

The marathon was a huge success! I was there, along with many other supporters! The whole atmosphere was one of excitement and inspiration. Keri looked like she was crushing Crohn’s and Colitis with every step she took towards the finish line (which she crossed with Parker himself!)

 

Parker at the finish line of the Vermont City MarathonIn just over a month, we were able to raise $750 dollars in donations to benefit the UVM Children’s Hospital as they continue to improve the care and health of children with IBD. Even though the finish line of this particular marathon has been crossed, this is just the beginning of an incredible and enduring partnership between a parent, a community, and a little boy named Parker.


Parker's Crohn's Diagnosis - One Step at a Time

Parker going on a zip-line adventure before Crohn's diagnosisParker is an energetic, blonde haired, little boy. Just like many boys his age in Vermont, Parker enjoys skiing, bike rides, grass-stained jeans, and his new puppy Bailey. During the summer of 2014 this perfectly healthy heart-throb of a boy was crippled with abdominal pain, fatigue, and weight loss. By the end of summer all of these horrible symptoms culminated in a diagnosis of Crohn’s disease at the blissfully innocent age of 7. As his family was coming to grips with life with a chronic incurable illness, Parker’s symptoms got worse. He was quickly admitted to the University of Vermont Medical Center and received his first dose of infusion medications to fight Crohn’s.

 

“I don't want this for him, there must be a mistake, Parker is my rock” his Mom, Keri remembers thinking. “As a parent you go through the motions and the emotions of a diagnosis. I think the hardest moment for me as a mom, was being strong in front of him, for him, and the family, and then breaking down when I was alone. I remember one moment, late at night in the hospital walking down the hallway of the children's floor, and I stopped. I could barely walk any further. I had to keep telling myself, one step at a time, whatever it takes to move, feeling so isolated and alone, and from that moment on, that has been my motto. One moment at a time, one day at a time, and one step at a time, to just keep moving forward.”

 

After three long days as an inpatient at the UVM Children’s Hospital, Parker was discharged. He almost literally rode his scooter right out of the hospital. With a huge smile painted on his face, you could almost see the shackles of illness begin to release their grip. The energetic little boy that they knew was coming back to the surface with every giggle that squeaked out of him, and they kept moving forward – one step at a time.

 

As the ICN Improvement Coordinator here in Vermont, I first met Parker just a few weeks after his diagnosis. He was getting an infusion and I had come to talk with his family about ImproveCareNow. Whenever I approach patients and families about ImproveCareNow, my wish is that they will see this Network as a glimmer of hope in what is most likely a very dark place, and ultimately that they will want to get more involved.

 

Through the icy grip of winter, Keri and Parker continued coming to the Children’s Hospital every 8 weeks for infusions. During one of these otherwise uneventful visits, Keri asked about becoming more involved with Parker’s care. Although this question is short in length and easily rolls off the tongue, I feel it is one of the most powerful questions a family can ask. That uneventful visit ultimately lead to one of the most engaging and empowering conversations and relationships that either of us had experienced in a long time. Personally, I don’t think either of us could have ever imagined what was waiting just around the corner. It wasn’t what we were expecting but was exactly what we were hoping for, and certainly something we weren’t going to say no too. This project with Keri has evolved over time and has been a huge learning experience for everyone, but we’re going to keep moving forward – together – one step at a time.

 

I look forward to sharing more with you as our relationship, and indeed our adventure, unfolds.


Communities take risks together.

I am writing this having just returned from several whirlwind days in Chicago at the first ever ImproveCareNow Community Conference. The ImproveCareNow Network has come together in person twice a year for seven years, but this was the first time this gathering was not called a Learning Session—the traditional Quality Improvement Collaborative term for in-person meetings. We changed the name for several reasons, the most important being that ImproveCareNow is now indeed a community. Here are some reasons why:

 

ImproveCareNow is a community

 

We have each of these things in ImproveCareNow and in future LOOP posts I will share examples of each. But one that I didn’t list,which became very clear to me at the conference, is that the best communities take risks together. I want to share a bit more about that here.

 

One of our conference goals was to brainstorm new interventions—in QI-speak, “changes to test,” - that will help us get even more kids with Crohn's disease and ulcerative colitis into remission. Prior to the conference, we developed a new list of key drivers—or focus areas—that we thought were most important to improvement. Now it was time to crowd-source the best ideas for interventions to tackle in each area. This tends to be the most fun part of the process!ImproveCareNow Key Driver Diagram with Primary Drivers and Space for new InterventionsThe ImproveCareNow Network has developed interventions together before. But this time, we wanted to make sure our incredible diversity and stakeholder engagement was really reflected in these new interventions. In the weeks leading up to the conference, each center interviewed patients and parents to get input on challenges and opportunities in each Key Driver area. In doing so, they opened themselves up to a variety of feedback; I know this felt risky to some centers.

 

Pre-work from the Spring 2015 ImproveCareNow Community Conference: Learning from Patients and ParentsBut as a community we took the risk together. Prior to the conference, nearly all of our 254 participants chose the three Key Drivers that most interested them. Once we received their choices, we put together small groups (6-9 people) that were as diverse as possible-blending people from different centers and with most groups including at least one patient, one parent, and others from several clinical roles. Planning this felt risky even as it felt like the right thing to do. Would people want to spend almost two hours of valuable conference time in an informal exercise with people outside of their peer groups? Would lone parents and patient at the tables feel overwhelmed, ignored, or vulnerable? Would conversations stall with the minutes ticking by slowly?

 

It ended up being a risk well worth taking. Between 2:00 pm and 4:30 pm on Saturday the low, quiet, steady buzz of conversation eased all of my concerns about people diving in and learning with those very different from themselves. Many observers noted that as  groups tackled the provided questions, the first thing they did was turn to the parent or patient at the table—deferring to their expertise. When each of the three 40-minute discussion periods ended, we worked harder than expected to get each group to wrap up and move to their next tables. And the notes that were shared—and will guide our work in the months and years ahead—are full of some of the richest, most diverse insights I’ve seen in my quality improvement career.

 

Example of Notes from the Small Group Discussions about ImproveCareNow Key Drivers and InterventionsWe work hard to make sure all participants in this community have the quality improvement structure, skills, and tools to achieve their goals. Even more important is making sure the right centers and people connect so they can do more together than alone. We foster this online on our ICN Exchange knowledge commons, on monthly webinars, and at our Community Conferences. Admittedly, this gets a bit more challenging as we grow and we don’t always get it right. But what these collaboration sessions showed me is that community members desperately want to keep connecting across roles and centers and that they embrace the expertise of everyone at the table. They are building their own momentum and will continue to do so even as we get bigger and push our network infrastructure to keep up. So thank you to the ImproveCareNow community for taking risks together, leaving roles and titles aside, and creating a better today and tomorrow for and with kids with IBD.


Interview with Laura Mackner


Laura, can you give us a professional snapshot of who you are?


I have several roles and titles etc., as you can see by my signature. I primarily conduct research as an Investigator in the Center for Biobehavioral Health at Nationwide Children's (NCH). That's about 85% of my job.  I also do some clinical work, primarily with children with IBD, as a child psychologist working with the IBD team and in the Division of Pediatric Psychology at NCH.  This is primarily outpatient psychotherapy, although in the past I have also done inpatient consults and work in the GI Clinic.  Finally, I have an academic appointment at Ohio State University, in the College of Medicine in the Department of Pediatrics, providing training and supervision to psychology and GI interns, residents and fellows. What will you be sharing at the Community Conference?



I'll be leading a breakout session on peer mentoring and giving a presentation on psychosocial issues in pediatric IBD.


For the session on peer mentoring, I'll (1) discuss some of the research on mentoring programs and some of the "best practices" that have been developed from this research, (2) identify some practical resources for developing a mentoring program that exist, and (3) we'll spend most of the session discussing challenges specific to developing a peer mentoring program for youth with IBD.  I'll discuss the peer mentoring program I've been running at NCH, and I hope to brainstorm with the participants in the session about some of the challenges that all mentoring programs face (e.g., recruiting male mentors) as well as some of the challenges specific to IBD mentoring programs (e.g., confidentiality, mentor-mentee matching issues).  Jennie David and Isabelle Linguiti will be joining me to sharing their experiences with formal and informal mentoring and help with brainstorming as well.


For the presentation on psychosocial issues, I'll be discussing psychosocial issues that affect patients and families living with IBD, and how psychosocial issues can also affect health outcomes in IBD.   We know that IBD can affect pretty much any area of life, so I'll be reviewing the research on overall quality of life, emotions, social life, school, and family.  I'll also review research on the risk factors that have been identified that suggest which children are more likely to experience problems in these areas.  Then I'll discuss how psychosocial factors can affect IBD, and things we can do to address psychosocial issues that may also affect IBD. How does this session/focus pertain to parents?  Or how can parents use the information as part of our mission to help improve care.


For peer mentoring, we initially ran focus groups to develop our program, and our NCH parents had a lot of great ideas.  I'd love to hear from the ICN parents, and I hope the information provided in the session will be useful for any parents who are interested in developing a mentoring program.


For the presentation on psychosocial issues, parents certainly play a role in the psychosocial health of their children, and I'll specifically be discussing ways we might be able to improve psychosocial and physical health.




Buzzy: A small tool to help in a big way

Three years ago my son started on Humira in an attempt to get his Ulcerative Colitis into remission. Although it quickly became apparent that Humira was controlling his UC, my husband and I were struggling to successfully administer the drug. Our process consisted of 30 to 40 minutes of negotiation along with bribes and other unsuccessful attempts at minimizing the injection pain. We tried our best to allow our son to have some control over the situation by waiting for him to tell us when he was ready.  In the end, we were just getting frustrated.  That is when we found Buzzy.

 

Buzzy was developed by a physician and pain researcher (www.buzzy4shots.com).  It works on the Gate Control Theory of Pain. Its design confuses the nerves with both temperature and vibration. The theory is that this distracts from the injection pain and interrupts the neural pain pathways. Using Buzzy has reduced our shot time to 2-3 minutes and has greatly reduced the family stress and anxiety associated with this experience. I knew that we needed to make Buzzy accessible to all of our patients who receive injections or infusions to help with injection pain and needle phobia.  With a price tag of $40, our care team recognized that this purchase could be a burden on families already dealing with high medical costs.

 

Our Parent Mentoring Group at Riley Hospital for Children did research using the ICN database to determine the number of our patients that were using injections and infusions as their primary therapy.  We collected data from the infusion nurses and Child Life specialists that had been successfully using Buzzy in the hospital.  Armed with this data and personal experience, we prepared a grant that we submitted to the Women for Riley, a philanthropic group of women that support the Riley Hospital and Foundation.  Our group was then selected to present our grant to the review board.  In late February, we received word that we were awarded the grant to purchase 150 Deluxe Buzzy Kits to distribute to our patients.

 

Over the next year, we will be distributing these kits to this target group of patients and any new patients that start on infusions or injections.  We plan on surveying the recipients to gauge the effectiveness of this device. Our hope is that Buzzy will improve the time spent administering injections, lower family frustration, and reduce the overall pain of the injection. These kids go through so many procedures and experience so much pain with their diseases.  It is wonderful to have a small tool to help in a big way.

 

[Editor’s Note: This story was shared by Liz D - a mom of a three boys.  Her youngest son was diagnosed with Ulcerative Colitis at age 5.  She volunteers her time as a parent representative on the Riley Hospital for Children Parent Mentor Group, where she is an advocate for all families with IBD receiving care at Riley.  A mechanical engineer by trade, Liz has “retired” and loves her role as a full-time wife and mother.  This has also allowed her to pursue her love of all that is artistic and creative.  Over the past 12 years, she has taught both photography and memory preservation classes to both adults and kids.]


← Previous  1  2  3  4  5  6  7  8  Next →

Built by Veracity Media on NationBuilder