ImproveCareNow Parents


Deb's Story

I was diagnosed with Crohn’s in 1984. Very little was known about IBD. Hospitals were isolated...no one shared information. Now over 30 years later....I never thought I would be a part of a collaborative network that's main goal is to share information and data. When our son was diagnosed with Crohn's disease....I felt like it was time to step up and have a voice.

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Guitar Chant

Most people have a connection with music. Music can calm us:  think about the lullabies we sing to our children. It can excite us: think of the huge crowds that jump and cheer at concerts. And most certainly music can cause us to be nostalgic: think about how often we hear a song and think, "wow that brings back memories!" For those who play and create music it can be an emotional outlet. Music connects.

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Music has always been an integral part of our family. Olivia plays the flute, sings and tap dances. Dominic plays the bass guitar and sings. And Jerome has made a living at being a musician, both as director of Liturgical music at Saint Michael's College and with various Jazz ensembles in the Burlington, Vermont area.  My name is Claire and even though I don't play a musical instrument, I've dabbled in singing in our church choir and love to listen to live music, especially if the musicians are my husband or kids!  

To many, a connection between Crohn’s disease (IBD), ImproveCareNow and music may seem unusual. To us it’s natural. We would like to share with you the story of how IBD has impacted our family and how it lead us to become passionately involved with ImproveCareNow. And, of course, how music is an integral part of our journey.


And the Crowd Goes Wild

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Whether it’s a concert solo, home run, parade, or when a family member gets out of the hospital after a long stay, there’s no feeling like when the crowd goes wild with support and encouragement. In these moments, the town you live in begins to feel like a community.


Building its success together.

Just after the ImproveCareNow Spring Community Conference last month, I wrote about the anxiety and anticipation that can precede such events. As I explained, “what we really want is to have set a scene that will allow all to feel welcome, included, part of the community, free to share their ideas and expertise regardless of role, and that they will leave having felt both delight and full of the “human affections” that are (or should be) the hallmark of a truly collaborative improvement community.”

After the conference, we asked members of the community—from diverse roles and centers—to share their perspectives on how we did. We hope you’ll enjoy their words. I know we all feel the challenge to maintain our momentum and indeed do even better next time and hope you will join us in finding ways to make our next community gathering equally inclusive and participatory – the very best it can be!


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.


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