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Improving Communication Throughout the JIA Journey

AiArthritis Voices 360 Main, Full Episode 83

Air Date: March 5, 2023

This episode is a Step 2 as outlined in our 6 Step Patient-Led Problem Solving Process.


Have you or your family been affected by juvenile arthritis? On this episode, Tiffany is joined by Rochelle Lentini, CEO and President of Purple Playas Foundation, who have united with other specialists and families to identify additional tips to improve communication.


During this episode, Rochelle and Tiffany discuss this new collaboration project between AiArthritis and Purple Playas Foundation, along with Rheumatology Nurses Society and Novartis, to create discussion aids and question guidance to help families improve communication with all the professionals they meet along the way. 


Tiffany and Rochelle also provide suggestions that can offer some hope to families struggling to get answers. If you would like to share your story, insights or recommendations to help us create these new tools to help those navigating through their Juvenile Arthritis journey, please fill sign up using our Google form at www.aiarthritis.org/jiacommunication


Episode Highlights: 


  • Rochelle shares the difficult, frustrating and lengthy diagnosis process for her son’s Juvenile Arthritis 
  • Common symptoms to look out for with Juvenile Arthritis 
  • What types of doctors you might see along the diagnosis process
  • Importance of symptom tracking with your children to provide as much details and data to your physician as possible
  • Tips on best questions to ask your doctor when seeking a diagnosis
  • How to improve patient - doctor communication for better understanding on both sides
  • How to communicate with your child and give them a voice when interacting with their doctor
  • Purple Playas and AiArthritis are coming together to collaborate on new resource tools for parents and children seeking a Juvenile Arthritis diagnosis
  • How to get involved in the new resource tool and share your insights and recommendations for improvements


Thank you to our project sponsor, Novartis, and our project collaborators, Purple Playas Foundation and the Rheumatology Nurses Society, for supporting the Journey Improvement Aids (JIAs) for Juvenile Idiopathic Arthritis (JIA) - Detection, Diagnosis, Treatment project.

AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot

Who is at the Table?

Tiffany Westrich Robertson, CEO of AiArthritis and person living with non-radiographic axial spondyloarthritis, &

Rochelle Lentini, M.Ed, CEO/President of the Purple Playas Foundation and both a person living with Rheumatic Arthritis and parent to a child with JIA, hypogammaglobulinemia, and other overlapping conditions.

Want to Learn More about our

JIA Communication Project?

Click Here to Go to Our JIA Project Page

All our main 1st Sunday of the month episodes are either an initial "put the topic on the table" episode (Step 2 in our organization's 6-step problem solving process) or a "revisit to the table" episode (Step 6 in our organization's 6-step process), where we build on a past show because we have moved forward in developing help, tools, or projects around the issue (Step 5 in our organization's 6-step process).


After each show airs we  spin off the conversation into many discussions over various formats, which we now call #360its (new in 2022)!

 

You can find, follow, and listen on Podbean, Spotify, Apple Podcast, or where ever you do podcasts. Please follow, rate, and subscribe to the show, then share it with someone. Be sure to check out our top-rated show on Feedspot!

And now, let's 360it!

The main Sunday episode is where we "put the topic on the table," but it's not where the conversation ends!  Now we spin off the conversation into different discussion segments. Below you will find several 360its. Some are videos from the main episode, while others are audiograms (soundbites).


Soon we will be launching additional 360its, which will build on these conversations. We'll hear from patients in the United States, Canada, and Australia who are here to help you through the transition to biosimilars. We are also planning a WATCH PARTY, where we will play back segments of webinars that aim to teach you more about biosimilars - and you'll have your fellow patients at AiArthritis to talk through it all with you!  Stay tuned.

SHORT VIDEO CLIPS FROM THE MAIN EPISODE

360it Short Video #1

The Journey Towards JIA Diagnosis

Living with Juvenile Idiopathic Arthritis (JIA) can be a challenging journey for both parents and children. In this video, we discuss the importance of open communication with your doctors and involving your child in the process. We also highlight the frustration that can come from gaps in communication and the importance of scheduling one-on-one time with your doctor to gain clarity and understanding of the next steps. Watch now for valuable tips and advice on how to navigate the complex journey of JIA with your child.

360it Short Video #2

Different Doctors You May See with JIA

Are you frustrated by the lack of answers and confusion surrounding your child’s autoimmune disease diagnosis? In this video, we dive into the complex world of JIA diagnosis and treatment. From navigating the confusing path specialists and doctors to understanding the limitations of lab testing, we explore the challenges facing patients and their families. Join us to learn valuable insights and strategies for managing your JIA journey with confidence and clarity.

360it Short Video #3

Importance of Good Communication with JIA

In this video, we discuss the challenging journey to a JIA diagnosis and the importance of clear communication between doctors, parents, and children. We'll explore how lab test results may not always provide definitive answers and offer tips on how to prepare questions for your doctor and seek clarification throughout the diagnostic process. Watch now to learn how to navigate this difficult journey and get the best care for your child.

SHORT AUDIOGRAMS FROM THE MAIN EPISODE

360it #1

Communication Includes Your Child

Empowering your child's voice is important during the JIA journey! Our latest podcast shares tips on effective communication with doctors, involving your child in the conversation, and navigating treatments.

360it #2

Meeting the Doctor without Your Child

As a parent of a child with JIA, it's vital to set aside time to speak with the doctor privately. This conversation can provide clarity about treatment options, time frames and help make informed decisions.

360it #3

Being in Tune with Your Child

Be vigilant for changes in your child's health, behavior or habits that may signal underlying health issues. It is important to recognize common signs of illness, even when your child can't verbally communicate them. 

360it #4

Asking for Clarification from Doctors

Parenting a child with health issues can be overwhelming. It is important to learn how to communicate with your child's doctor effectively, ask the right questions & navigate the JIA journey with more confidence.

360it #5

The Difficulty of Diagnosis

Getting a diagnosis for juvenile arthritis can be a long and complicated journey. Rochelle shares her journey of her son’s diagnosis and the missing gap in resources for parents and children. 

Your Co-Hosts & Guests: Who is at the table this episode?

Tiffany Westrich-Robertson

Tiffany is the CEO at the International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem-solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels. 


Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.


Rochelle Lentini

Rochelle Lentini, M.Ed. is CEO/President of the Purple Playas Foundation and an early childhood education national consultant/trainer. She has RA and her son has juvenile arthritis, hypogammaglobulinemia and other overlapping conditions. Rochelle has over 40 years experience working with children with disabilities and their families and is a nationally recognized speaker. Her passions include family centered supports, inclusion, and inspiring hope for kids with chronic illness.


Pull up your seat at the table

Now it's YOUR TURN to join the conversation!

What do you think about this episode?

We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community.  Better yet, through these conversations we can start working and developing solutions.


We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!


Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)

Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!

Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!

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