The Communicative Participation Research Project

[brooksea]

A Speech Language Pathologist at U of W in Seattle is asking for volunteers to fill out a couple of questionnaires regarding communication for those that still use speech as their main means of communicating (although you can have an augmentative device).

They will pay you 20 bucks or you can choose a $20 Amazon gift card.

Here's the link to the article in the MDA/ALS News Magazine:

The MDA/ALS Newsmagazine 15-2 | MDA

 

[BarryG]

CJ, I was mailed a letter about this from my clinic and they were encouraging me to get involved. I haven't done anything about it but will do it in the next few days. Thanks for the reminder.

 

[brooksea]

No. 3 kinda has me stumped?

"Are you eligible to participate in this study?

Before you go on, please be sure you meet the following requirements for this study:

1. You are an adult aged 18 years old or older

2. You have been diagnosed with ALS (amyotrophic lateral sclerosis) by a physician at least 3 months ago

3. Your speech or other forms of communication may or may not have been affected by your health condition. To participate in this study your speech needs to be intelligible enough that you can still use it to communicate with other people. You might use gestures or writing to help at times, but your speech needs to be intelligible enough that other people understand you most of the time in everyday situations. If you rely completely on writing, gestures or computerized systems (AAC) to communicate, you are not a candidate for this study at this time.

If you do not meet the three criteria above, we are sorry but you are not a candidate for this study at this time. Please do not continue with this email or the questionnaires. Not meeting the criteria is no fault of your own. We have just set these criteria for the purposes of our research."

 

[BarryG]

Well no $20 for me then! Even in my wildest and most optimistic state I could not say that I qualify given this statement "but your speech needs to be intelligible enough that other people understand you most of the time in everyday situations"

I understand exactly what I am saying, it is those other people's fault that they can't understand me. And as for gestures, don't get me started! Oh well, their loss so on to new pass times for me!

 

[brooksea]

You didn't miss anything by not being able to participate! LOL I really don't see how the survey would be helpful to SLPs and pALS, as the questions just seemed so common sense to me and my husband. (paraphrasing here): "Would you consider that your speech keeps you from talking on the phone?" Multiple choice answers such as, "not at all, somewhat, a lot, do not use the phone, or refuse to answer the question." :roll:

I particularly liked the note in the instructions:

A note to family and friends: You may help the person in the ways described in the prior paragraph. However, please DO NOT choose the answer for the participant. If you find yourself thinking or saying the following: "I'll choose this answer for him because I think he would feel this way," then this participant should Not be participating in this study at this time.:shock:

Seriously, I hope they know what they are doing and it is a help.

 

[BarryG]

Yow, sounds like a committee made up that questionnaire! I should call them on the phone and ask them in my best computer voice why I cant participate. It sounds like the $20 is not enough to cover the aggravation of a badly thought out survey.

 

[cbaylor]

I wanted to comment on this thread if I might. First, full disclosure that I am one of the speech pathologists (SLPs) working on this research project. I was just checking on some of our postings and noticed this thread. I wanted to take a moment to thank you for the comments as we learn a lot by hearing people’s opinions – and to say that I’m sorry if your experience with the questionnaires was not a positive one. Comments like those here help us learn what we are doing well and what we can do better.

The history behind this project is that much of healthcare, including SLPs are sometimes a little behind “real world” problems. We have spent much of our history as a profession worrying about the strength in people’s speech muscles or how far the tongue can move when it is weak. Then we moved on to focus a lot on speech intelligibility (meaning how much of your speech do others understand – 80%? 30%?). That is helpful but it does not tell the whole story. What we really need to know to guide our service is what impact ALS is having on your ability to just do the day to day things you need or want to do like having a conversation with friends, or making a phone call, or talking to a store clerk to exchange an item, etc. As you mentioned, much of that may have to do with what other people do to communicate with you (or what they don't do). The best way for us to know that is simply to ask you to tell us about your experiences. But, many of the people and/or institutions we have to answer to (i.e. doctors who refer to SLPs, clients, insurance companies…) want us to put that into numbers. Hence, many SLPs are now exploring ways that we can accomplish several goals including: 1) paying more attention to the real-life impact of speech conditions; 2) making sure the opinion of the person living with ALS is heard and represented amid all the other information floating around in medical charts and research studies; and 3) putting it in numbers that a lot of stakeholders demand. The questionnaire you saw is one effort to do that – and although we recognize that it cannot tell the whole story of your experiences we are looking at ways to reflect the opinion of the person with the speech condition and their real-life experiences in a way that stakeholders will accept. The questions are a set of candidate questions and based on how people answer the questions we will pick the final set that seem to be most relevant to people.

You brought up a couple of logistical points and I appreciate that. We are not happy that we are not including people who use AAC (computerized speech devices) exclusively in this study. We have two reasons for that. One is purely logistical that we couldn’t ask all the questions we want to ask in this study with the resources that we have. We have to work through the project in stages and consulting with AAC users is coming up. The second reason is that we need to spend some time communicating with people with AAC to find out if the questions as they are now are relevant or appropriate. Many of our questions refer directly to “speech” or “talking.” We need to know if it is appropriate or possibly offensive to ask people who use AAC about “speech.” Do we need to write an alternate set of questions for people who use AAC exclusively to be sure we are asking the right questions and using acceptable terminology?

So for this step in the process we are working with people with any range of speech difficulties from very mild to severe (sorry that wasn’t clear before). We are accepting the range from so mild that perhaps you are the only one that notices the change to pretty severe but still able to use some speech. We are keeping this to the opinion of the person with ALS at this time. Again, the opinions of family / significant others is part of the picture but we just can’t include everything at the same time so we are giving priority first to the individuals who have ALS in this study. Later we will include the views of family / others.

Thank you for allowing me to comment here. Again, I am sorry if your experiences with the study were not what you expected. I hope others will have better experiences. If you wish to offer further comments about our study, or if you have questions you may contact us at [email protected].