Patient Customized Communication Tabbed Flipbook

Why did we create the Patient Customized Communication Tabbed Flipbook?

We have had so many people with ALS express frustration with trying to quickly communicate (often with speech) a simple and often repeatedly communicated and predictable message.  Examples include:  ‘Adjust the strap on the BiPAP mask’ or ‘put pillow behind my neck’ or ‘don’t forget to lock the brakes’.  Similarly communication partners have reported being very frustrated and often feeling very guilty when they can’t understand a message, especially when they realize that the message is a communicated regularly in the same context, often multiple time a day.   One man stated to us: “Why did I make her say it five times and why did I raise my voice in frustration when I couldn’t understand?   I should have known exactly what she was saying because she says it all the time in that same context”.    

Initially, we encouraged people to write down such messages when they occurred so a ‘list could be created; but nobody did that.    So, in 2011, in an effort to create a format for people to use, we created a blank, tabbed flipchart.   We bind the pages together and we give them to people with ALS and their families. 


Typical instructions to person with ALS and their communication partner(s):

1. Identify situations or context throughout the day in which you say the same thing and you want to make sure people always understand exactly what you are saying.
2. Write each context on one of the tabs at the bottom of the flipchart.  A few examples include:  positioning, food, personal care, bed, technology, social, bathroom.
3. As you think of a predictable message you communicate in each context – write that message down (or direct someone to write it down) in one of the boxes on the appropriate page.   
4. Add messages as they occur to you over time.
5. Invite your communication partners to make suggestions, especially for contexts in which they are typically with you and may be supporting you.
6. When you think you have a good start, give us a copy of what you have done and we will make your pages, laminate them and bind them together.
7. After we give you a clean copy of your customized communication tabbed flipbook, try using it. 
8. Identify a way you are going to tell your communication partner ‘yes’ when they scan through your flipbook with you. 

Typical instructions to communication partners:

1. If you don’t understand what is being said, report that you cannot understand and ask “Is it on your flipbook?”
2. If the answer is yes, read through and point to each of the tabs until you are told ‘yes’ (you have already established together what that ‘yes’ signal will be).
3. Turn to the appropriate page and then go through each of the messages.   Some people have preferred to first review columns (is it column one?, column two?, etc.) while others prefer to quickly read through each message on the page.

The Patient Customized Tabbed Flipbook will likely need to be updated regularly.  Some contexts will be added as medical status changes  while others may be removed (add a ‘g-tube’ page while possibly removing or significantly modifying the ‘food’ page).    

Boston Children's ALS Program Flipbook for PatientsDownload a Flipbook

This tool has been extremely useful to many people.   Because so many people have asked for it, we have created an on-line template you can fill and print.  Please note, the document will be downloaded as a PDF and can be edited in Adobe. Download your customizable copy of the Flipbook here.

 To watch a quick video tutorial on our customized tabbed flipbook, click the video below: