ALS TALK Updates and Outcomes

Research about communication with and information gathering by people with ALS and their loved ones is critical to improving clinical communication.

We have completed The ALS Talk Project online focus groups for people with ALS and family members/caregivers. Thank you to everyone who shared their experiences and reflections!

Here are some of the things that people said about participating in an ALS Talk focus group:

• "I have really liked the opportunity to reflect and summarize our experiences. I feel like I am contributing in some way. I have enjoyed reading others' responses."

• "I have really enjoyed hearing about others' experiences and learning from them. I would also like to think that others have learned from me a bit which is always a good feeling :) "

• "The ability to see other participant's responses and sometimes get a bit of conversation going was a nice difference from other studies that were simply questionnaire or interview based. Others comments gave me additional perspective and caused me to think about a few things differently."

We are beginning to analyze comments and conversations from the focus groups.

Following analysis, we will share what we have learned. We will share with a small group of ALS professionals in a focus group format. We will also share findings on this website, at conferences and in publications.