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From: scott yaruss
Date: 20 Oct 2004
Time: 17:39:49 -0500
Remote Name: 65.74.234.205
hey folks - thanks for bringing this up Vasu - sorry to be slow in responding. it's not at all because the topic isn't important. indeed, it is among the most important topics we can discuss in terms of treatment outcomes research... I thought Anne's post was interesting, sort of framing the differences -- and similarities -- in different ways of approaching the problem. I'm going to agree that it's probably impossible to come up with a COMPLETE list of all of the possible issues that might apply to all people who stutter... but I'm not sure that's the task, and I think just because it's tough doesn't mean we shouldn't try to do something reasonable -- find a middle-ground that allows us to capture several key parameters that are meaningful to many people who stutter... Some is better than none, in my opinion. SO, what factors? well, of course something about speech fluency -- but i'm interested not JUST in the clinician's view of the disfluencies, but also in the SPEAKER's view of those disfluencies. The speaker's perception of his speaking difficulties will play a large role in determining how he reacts to them and how he feels about himself as a communicator, regardless of what the clinician's frequency counts might say. SO, sure, count stuttering, but also assess things from the SPEAKER's experience... And in fact, that leads to the broader set of variables I'm interested in -- the speaker's experience of stuttering. Some of you may know that Bob Quesal and I have been working for some time on developing a paper-and-pencil instrument that can be used to give people who stutter the opportunity to explore their experience of the overall stuttering disorder -- how they react to their stuttering, how they feel and think about themselves as people who stutter, what stuttering means for their ability to communicate in real-world situations, and the impact of stuttering on their quality of life... The instrument, called the OASES (Overall Assessment of the Speaker's Experience of Stuttering) can be obtained on my website (www.StutteringCenter.org) and Bob and I will soon be submitting it for review and, with luck, eventual publication. (In fact, Bob and I are both on sabbatical this term -- thus the slow response to your post -- and we will be meeting next week to finalize the manuscript.) It's been a long process developing this instrument, in part because of the complexities that Anne alluded to. Trying to figure out what factors are relevant for a large subset of people who stutter has led us to examine the reports of focus-groups who told us about their speech, pilot analyses (done in large part with the assistance of the National Stuttering Association), field-testing, validity and reliability checks, etc., to see if we can come up with a set of test items that tells us something meaningful about a speaker’s experience of stuttering. I think we’ve succeeded, but this is where we might run into a bit of disagreement between various camps in the field of fluency disorders. When we come back to the questions of whether or not we can get a good handle on a set of items, I start looking for a model to guide our thinking. I wanted to link our efforts to a broader definition of health-related experiences, so as a starting point for the OASES, I used the World Health Organization’s (WHO) International Classification of Impairment, Disability, and Handicap (ICIDH) – that original framework has now been replaced by a newer framework – the International Classification of Functioning Disability and Health (ICF). It describes that the experience of any health-related issues (and stuttering is one) can be viewed in terms of the impairment in the structure or function of a person’s body (in this case, the impairment is in the functioning of the speech mechanism), and the impact that impairment can have, in terms of limitations in the person’s ability to perform daily tasks (like talking in various situations) and the restrictions that the impairment may ultimately cause in the speaker’s ability to participate in his life in the way he wants to. It also accounts for the speaker’s reactions to their impairment (which play a large role in determining the extent to which the speaker will experience negative impact) and it also accounts for the reactions of those in the speaker’s environment (peers, teachers, parents, etc.). Thus, we have a complete view of the stuttering disorder. (If you’re still reading at this point, you know that I have a lot to say on the topic… and there’s more ;-) check out Yaruss (1998) and Yaruss & Quesal (2004) and a bunch of other articles, including some here on prior ISAD conferences. Here’s where I think we can move beyond just speech fluency and speech naturalness…we have guidance from a world-wide organization (WHO) about what factors we might consider when we think about the impact that people’s conditions might have on their ability to function and participate in life (ICF). The OASES starts with these components (impairment, personal reactions, environmental reactions, and impact on the person’s life) and follows with a series of questions in these domains that are particularly relevant to the lives of people who stutter. We know their relevant through the field testing. Are they ALL relevant items? No, not by a long shot…but they do help us get a handle on the speaker’s experience of stuttering in a mere 100 items. (100? Yup…but it only takes about 15 minutes for people to complete.) If people can describe their experience of stuttering—for the most part—in just 15 mins, then I think we’re doing okay and we’re headed in a good direction. Again, I understand that others may have different opinions, but I see no reason to limit our data collection just to speech fluency, speech naturalness, etc. and ‘my favorite measure’ when we can indeed get a pretty good idea based on the responses from several hundred people who stutter, then we’re in pretty good shape, at least for a start. Of course much more work remains to be done. Does this mean I think we should force everybody to use this set of measures, to come back to Vasu’s original question…no, we shouldn’t force them, but it would be pretty good if we could all come to agreement about the importance of considering the speaker’s experience, rather than the clinician’s interpretation of same… Sorry to be long winded – Judy, I hope this will make up a little bit for my nonparticipation ;-) (I only had time for the response today because my flight is delayed, so I’m sitting here in DFW with a few unfilled minutes!) Hope this helps…if you have more questions or thoughts about this after the conference is over, just email me at jsyaruss@csd.pitt.edu... Thanks for listening (if you're still reading by now -- I guess I'm not known for my short responses ;-) S