The cover of Chrysalis, which features a young girl looking into a mirror. Her reflection has butterfly wings.

I first wrote Chrysalis for my cousin Kaley, a teenager with a developmental disability, when she needed heart surgery. She loved the book, and we decided to share our story with the world. But taking Chrysalis from a Word document to an Amazon publication wasn’t an easy process. These are the steps, loosely organized by the process of Intervention Mapping, that I used to publish Chrysalis.

Intervention Mapping

Intervention Mapping is a process used to design public health projects like vaccination campaigns, weight management programs, and HIV prevention initiatives. It’s a six-step approach to problem-solving that emphasizes the importance of evidence and research.

By itself, Chrysalis is less of a public health project and more of a tool to help kids cope with surgery. Nonetheless, the six steps of Intervention Mapping were a helpful guide as I went through the process of publishing Chrysalis.

Step 1: Research the Problem

When Kaley needed surgery, I began to look for books about surgery that would be appropriate for teenagers with developmental disabilities. But I couldn’t find any. In April 2023, Amazon showed over 5,000 results for “surgery books for kids” (mainly picture books), over 2,000 results for “surgery books for teens” (mostly coloring books and sudoku puzzles), and less than 40 results for “surgery books for teens disabilities” (few of which were actually relevant, and none of which Kaley would enjoy).

That’s how I first identified the problem: little-to-no books existed for teens with developmental disabilities about coping with surgery.

It might sound like this is a niche audience. (First of all, so what? Even if the situation is relatively rare, the kids experiencing it still deserve resources!) But also, heart problems and developmental disabilities are closely interlinked. Kids with congenital (aka, born with) heart defects are more than four times as likely to have autism, over nine times as likely to have an intellectual disability, and nearly four times as likely to have a learning disorder (Razzaghi et al., 2014). Meanwhile, nearly half of newborns with Down syndrome have heart defects (Stoll et al., 2015). And although most pediatric heart surgeries take place in young children, many older kids and teens need surgery as well.

Don’t forget, these statistics are just about heart surgery. Kids also need many other types of surgeries. Each year, nearly 5% of kids in the US undergo some sort of surgery (Rabbitts & Groenewald, 2020). I decided that in Chrysalis, I would focus on heart surgery, but include tips and coping strategies that could apply to other operations as well.

My Research

Once I had identified the problem, I jumped into research. I needed to find out what a book like this should include. First, I spent weeks reading and taking notes on parenting guides for how to talk with children about surgery (see Resources for Pediatric Hospitalizations for some examples).

Then, I created an online survey for family members, teachers, and medical professionals. I created different forms for each group to ask about kids’ interests and reading levels, desired resources, and concepts that a book like mine should cover. I advertised the survey on social media. Afterwards, I analyzed the answers in terms of numbers (quantitative) and open-ended descriptions (qualitative). These results gave me a better idea of who my audience was and what they wanted to see in Chrysalis.

The survey also helped me identify people who were willing to be interviewed. I developed guides for semi-structured interviews where I learned more about people’s individual stories and insights. Their suggestions were essential to writing and editing Chrysalis. (If you participated in the survey or interviews, thank you again!)

(Note: This project did not require IRB approval because it falls under the umbrella of market research. However, I did treat participants with confidentiality and similar protections that would normally be required under IRB.)

Step 2: Prepare Goals and Objectives

My research helped me to define my goal: to improve the relevant knowledge, attitudes, and social-emotional skills related to major surgery and recovery among children ages 8–12 with developmental disabilities.

(As a side note, I think Chrysalis can help people of many different ages and abilities to cope with surgery. Some readers might be older, younger, or experience different challenges. But because most survey respondents cared for or worked with this particular population, that’s the audience I focused on when editing the book.)

I outlined several learning outcomes (objectives) that would help me achieve my overall goal.

Knowledge: After reading this book, kids will be able to

  • Describe the sequence of events involved in preparing for, having, and recovering from an operation
  • Explain that surgery will help their body
  • Identify the roles of a cardiologist, surgeon, nurse, and child life specialist
  • Name three preferred coping skills
  • Identify common tools used by healthcare professionals
  • Describe the appearance of and what happens in the waiting room, pre-op room, and post-op room
  • Explain the purpose of anesthesia
  • Explain why the body needs to heal after an operation

Attitudes: After reading this book, kids will “agree” with the following statements

  • My body is strong, but it needs a little help.
  • It’s okay to need help.
  • Surgery is meant to help me.
  • I have many people to support me.
  • My doctors and nurses will help me feel better.
  • I can get ready for surgery by talking with my doctor, child life specialist, or other trusted adult.
  • When I have a question, I can ask my doctor, child life specialist, or other trusted adult.
  • When I feel sad or scared, I can use coping skills to feel better.
  • When I feel uncomfortable, I can ask for help.
  • If plans change, I can use coping skills to feel better.
  • If I am sore, medicine can help me feel better.
  • It is normal to feel a little sore after surgery.
  • The hospital is not a scary place.
  • I am brave. 
  • I know what to expect before, during, and after surgery.
  • Anesthesia will help me not to see, hear, or feel anything during the surgery.
  • I will wake up at the right time.
  • With time and rest, my body will heal.
  • Physical therapy can help my body heal.
  • After the surgery, I will still be me. 
  • A safe adult can help me in the bathroom after surgery.
  • My scar will remind me that I am brave.

Skills: After reading this book, kids will be able to

  • Identify their emotions
  • Manage their emotions using coping skills
  • Ask questions
  • Ask for help when they are uncomfortable
  • Use a checklist to identify steps of the surgery process

Step 3: Select Theory-Based Methods & Strategies

The main theory that drives Chrysalis is social-emotional learning (SEL), an educational approach that has grown in popularity in recent years. Hundreds of studies have shown that SEL improves academic outcomes, supports students’ mental health, and promotes positive behaviors. This approach wasn’t new to me: I had the opportunity to teach SEL to middle-school students through a program with After School All-Stars. Over a few short weeks, I saw for myself how much the kids learned and matured. In short, SEL empowers kids to develop self-awareness, manage emotions, make responsible decisions, build positive relationships, and empathize with others.

Chrysalis focuses on building self-awareness and helping kids manage their emotions. According to the CASEL website, these skills include kids’ abilities to:

  • Identify and find connections between their emotions, values, and thoughts
  • Advocate for their needs
  • Have a positive mindset towards growth
  • Manage stress and emotions
  • Practice organizational strategies

Kaley has the opportunities to practice these skills throughout the story. This storytelling technique builds readers’ self-efficacy (a type of self-confidence) by illustrating different ways to overcome obstacles. This form of observational learning is a part of social cognitive theory, another popular theory in behavioral health.

Furthermore, Chrysalis is rooted in the individual level of the social-ecological model because of its focus on knowledge, attitudes, and skills. However, it could also be a good discussion resource for building relationships and community.

Finally, I identified communication strategies that I learned while working with children with developmental disabilities. For example, Chrysalis uses concrete language, breaks big ideas into smaller tasks, explains concepts in multiple ways, repeats key ideas, and discusses ways to establish coping skills and routines.

Step 4: Produce Program Materials

For this step, I drew on my creative writing skills to tell a story at an appropriate reading level for my audience. Moreover, I made sure the story and the writing itself were fun and engaging!

I also wanted the book to have illustrations, but drawing is not my strong suit! Instead, I reached out to Yifei Gao for help. She used feedback from Kaley and her family to develop colorful pictures.

In addition to the story itself, I developed a caregiver’s conversation guide as well as surgery-related checklists for kids and caregivers. These materials weren’t a part of my original plan, but had been great recommendations from several survey participants and interviewees. I included these materials in the back of the book.

Step 5: Make an Implementation Plan

Although I expect individual caregivers to buy this book for their kids, I anticipate that most of the demand will come from medical professionals who regularly work with this audience. As a result, I am in the process of identifying healthcare partners and nonprofits who can distribute Chrysalis to patients on a larger scale.

Step 6: Make an Evaluation Plan

Before I published Chrysalis, I sent it out to several beta readers recruited from my survey and social media. I asked these readers about the things in the book they liked and what they would change. I also asked them to rate whether the book accomplished each of the objectives I had outlined. To my delight, most readers “agreed” or “strongly agreed” with most objectives!

After Chrysalis is published, I will continue to evaluate its performance based on Amazon reviews. (If you read the book, feel free to leave a review and let me know what you think!) Depending on the feedback, I might revise the book to better suit audience needs. But for now, I’m very pleased to say that Chrysalis is off to a great start!