Pectus Empowerment

Pectus, or sunken chest disease, is one of the most painful surgeries performed at Cincinnati Children’s Hospital. At Live Well, a diverse team of researchers, strategists, and designers worked alongside clinicians, behavioral psychologists, and holistic health specialists in creating a design strategy that improves the overall experience of patients and their families. 

When:  Aug 2018 - Dec 2018

For:  Cincinnati Children's Hospital Chest Wall Center

Role: UX & Research Design Co-op

OVERVIEW

The Problem

The surgeries for pectus excavatum are the most painful surgeries performed at Cincinnati Children’s Hospital. The fear of pain and lack of education on pain management tools can cause patients to feel heightened anxiety about the surgery process. 

OVERVIEW

The Opportunity

Design an empowerment tool that bridges an education system with rehabilitation efforts for pectus patients and families and to enable them to take charge of their pain journey and reduce anxiety. The tool must be personalized, interactive, and follow the Hero’s Journey narrative. 

OVERVIEW

What is Pectus Excavatum?

Commonly called “sunken chest,” pectus excavatum is a depression caused when the sternum (breastbone) is abnormally pushed inward. When severe, it pushes down on the heart and lungs and makes it hard for them to work properly. The abnormality often increases with age.

 

The condition is treated by repair surgery which usually means the patient will receive a small incision in which a “pectus”  bar is inserted into the chest to support the sternum. The bar is pushed behind the sternum, and rotated forward to raise the sternum to the correct position. The pectus bar is usually removed in 2 to 4 years. This surgery generally happens between the ages of 13 and 18. Link to surgery animation

OVERVIEW

Challenges

Surgery Stigma 
Preconceived notions stigmatize the pectus excavatum surgery, and lead to elevated levels of fear and anxiety in the minds of prospective patients.

Motivation and Engagement
Postoperative patients need motivation and engagement in their recovery process.

Pain Medication
Patients need an understanding of how to manage pain without relying too heavily on pain medication.

RESEARCH

The Hero's Journey

The pectus experience was framed as a common template for storytelling called the hero's journey. In this format a hero goes on an adventure, and in a crisis wins a victory, and then comes home transformed. This closely mirrors the transformative journey a pectus patient goes through. This strategy helped us to understand the patient journey and pain points as well as empower the patient. Illustration by Munazza Aijaz

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RESEARCH

Research Tools & Insights Collection

The team conducted research with patients and parents who had gone through the pectus procedure or who were about to go through the procedure. For those who had already had the surgery, we used the journey map as a visual tool prompting them to point out various experiences they encountered at each step. At each pain point we asked patients to choose from a card set of potential management tools they might use. In total we spoke with 10 patients and 14 parents.

RESEARCH

Benchmarking 

RESEARCH

Patient Personas

RESEARCH

Parent Personas

PATIENT PERSONAS

RESEARCH

Interview Key Takeaways 

  • There is a wide range of fears to consider, so the tool should be personalized to accommodate this range. 

  • Some patients have very involved parents while others must cope on their own. The tool should help educate patients on how to manage their pain independently and also help aid more involved parents. 

  • Holistic health is a very effective tool in helping patients manage pain, but pectus patients don’t realize it is a resource since it is mostly offered to patients dealing with chronic pain. 

  • The current holistic health education is not approachable to patients. It exists as a large binder with lots of reading which is not appealing and very overwhelming. 

  • Parents and patients often doubt the effectiveness of holistic health. 

IDEATION 

Compiling Pain Management Tools  

Based off of work with holistic health and interviews with patients and caregivers, we developed 17 empowerment tools to aid in anxiety and pain management. These combine both existing tools the hospital already offers and new ones in which patients expressed interest. 

IDEATION 

Applying Tools To The Patient Journey Strategy 

After identifying and categorizing the tools, the team developed a strategy for applying the tools to what we would expect to be the most useful to each patient and parent persona. We also looked at each obstacle in the hero’s journey and determined which tools may be the most useful depending on the persona type. 

IDEATION 

Applying To Tools The Patient Journey

The tools were analyzed and applied to each obstacle in the hero's journey/patient journey. The team determined which tools would be the most useful depending on the persona type. 

Click here for pdf details of poster

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REFINEMENT 

Final Deliverables 

  1. Education Video: introducing patient to the pectus journey

  2. Binder: reorganized holistic health education binder 

  3. Booklet: holistic health education overview booklet 

  4. Card Set: choosing your tools 

  5. Interactive Site: choose your tools online 

REFINEMENT 

Education Video 

This animated video introduces patients and caregivers to the journey that they will embark on at CCHMC. Its primary purpose is to comfort families as they move forward in their journey, and ensure that CCHMC can deliver high quality care.  Video made by Munazza Aijaz

REFINEMENT 

Empowerment Booklet

This education booklet offers an abridged version of the original CCHMC holistic health binder that patients were offered. The booklet also applies a more teen-friendly voice to the copy. It contains relevant information about the pectus journey and extended readings about the tools and resources. It also suggests best practices for using the toolkit and navigating the journey.

REFINEMENT 

Empowerment Card Set 

Each of the 17 tools introduced in the empowerment booklet were reformatted into a condensed arrangement of cards. Each card offers a unique QR code to link patients and caregivers to extended media such as videos, apps, readings, and printable activities to minimize their pain and maximize anxiety management. 

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While the empowerment book is primarily an educational tool, the cards can be directly applied and utilized when encountering pectus-related obstacles. Patients can pull out the cards they want to apply to their journey and build their own individualized toolkit.

REFINEMENT 

Digital Card Set Building Application

Patients can gain access to the cards by visiting the Chest Wall Center website and utilizing the interactive tool building application. Once patients learn about each tool and select their cards they can either print or download them to a smartphone. 

REFINEMENT 

Empowerment Toolkit Lifecycle

REFINEMENT 

Mapping The Ideal Patient Journey With Toolkit Intervention

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CONCLUSION

My Role and Responsibilities 

  • Formed goals and directions 

  • Was primary communication connection between team and CCHMC

  • Formed interview questions

  • Interviewed patients, parents, holistic health specialists, and other stakeholders

  • Developed parent and patient personas

  • Built and designed interactive tool

  • Led design of booklet and cards

  • Developed implementation strategy 

  • Presented research, ideation, and refinement phases to client 

CONCLUSION

Key Learnings and Reflection

My key takeaways from this project centered mainly around my developing a deeper understanding of the design thinking process. I particularly learned a lot about research best practices and how to develop research tools to better guide the feedback you receive, so you are sure you get to the root of the problem. My application of methods like persona creation, journey mapping, and benchmarking have become very useful skills that I have since applied to other projects. I also learned how to be comfortable creating in a space that early on is often ambiguous and unknown. I discovered that it’s best to start out absorbing information and becoming an expert on your topic before rushing into a solution and designing concepts.

Project Team

  • Adriana Navarro: Graduate Research Fellow

  • Katie Lake: Fashion Design Co-op

  • Munazza Aijaz: Motion Design Co-op