ImproveCareNow Parent_partners


Collaboration. Connections. Community.

These three words (collaboration, connections, community) come to my mind when I think of ImproveCareNow (ICN). And they represent three reasons I love leading our Family Advisory Council and sharing ICN with the families of Dayton Children’s. These are my people. They understand my life. They, too, know what it’s like to parent a child with IBD.

It is for all of these reasons that I am thrilled to host Virtual Community Conference (VCC) Watch Parties – so we can collaborate, connect and feel like we’re part of a community.


Honored to Serve

My name is Missy and I am a new member of the ImproveCareNow Board of Directors. When my son was diagnosed with Crohn’s disease in the fall of 2016, one of the handouts I received from our care team at Nemours Jacksonville was a flyer about ImproveCareNow (ICN). That night I signed up for the Parent Working Group and the ICN newsletter.


Hi, I'm Pam

I’m Pam, and I’m a member of the ICN Parent Working Group (PWG). My husband Kraig and I have three teenagers, and I became involved in ICN soon after our oldest son was diagnosed with Crohn’s disease. He first started having symptoms in the fall of 2015 and was diagnosed in March 2016.


Finding Hope

My name is Maria and I live in Orlando, FL. In 2004, our family received the devastating news that our oldest daughter had Type 1 Juvenile Diabetes. I would have never imagined that a few years later in 2013, we would find ourselves confronted with yet another life altering diagnosis. 


A Journey to Sustain Remission

My son was diagnosed with ulcerative colitis in 2014, at the age of 13. Fast forward to 2018, and I am thrilled that he is in remission and a thriving 11th grader juggling AP classes, SATs, extra-curricular activities, college tours, and yes, medication adherence. However, I’m also here to tell you, it has been a journey to achieve and sustain remission. Like so many of you, my mind raced with a litany of questions for days, weeks, and months after his diagnosis…IBD? Ulcerative colitis? What? No cure? How did my son get this? Next, guilt set in and then more questions…Why had I not heard about IBD before his diagnosis? Is this genetic? Was it the foods I prepared? Could I have prevented it? I was so distraught. I could not fix this, not this time.


Parent and Caregiver Self-Care Tips

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I am a parent of three children, and all three have Crohn’s disease. My oldest was diagnosed in 2010 and my younger two were both diagnosed at the same time, in 2013. As a parent of one child, let alone three children with IBD, I found life overwhelming, stressful, and mentally and physically draining. Personally, I have found self-care to be a critical piece in coping with the initial diagnosis and the on-going treatment and care of my children. I will be the first to admit I struggle with self-care at times, but at least I have a list:


Parents in Research – Updates from the PWG Research Subcommittee

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My name is Derek and my daughter, Caitlyn, was diagnosed with Crohn’s disease at age 9. At that time, I immersed myself in the medical literature and sought to build good connections with like-minded parents through organizations like the Crohn’s & Colitis Foundation and, ultimately, ImproveCareNow. Through ImproveCareNow, I have joined a community of patients, parents and scholars engaged in understanding, managing and treating pediatric IBD. This year, I was pleased to be offered the opportunity to engage at a deeper level with the ICN community, by serving as lead for the Parent Working Group Research Subcommittee for ImproveCareNow.


As the holidays come and go

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Holidays are a special time for all. The hustle-and-bustle is paid back in spades as you watch a child’s joy when they unwrap a special gift or when you spend time with extended family. A few years ago, I was given a very special gift at Christmas – one which I will never forget.


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!

 

 


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.




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