The Communicative Participation Research Project

Research Participants Needed!

In our current research project we are creating a questionnaire about how communication disorders affect participation in everyday life activities. When this questionnaire is done, it will be used by healthcare providers to better understand the experiences of people with communication disorders. It will also be used in future research to learn more about the real-life impact of communication disorders. Our goal is that this questionnaire will be one of several tools that clinicians can use to help people with communication disorders improve their participation in activities that they want to do. We have a draft of the questionnaire ready, and we are currently seeking feedback about the questionnaire from people who live with communication disorders.

Participation in this study involves meeting with the researchers for a one-time visit that usually lasts 1 1/2 - 2 hours. We can adjust this schedule for your comfort. During this meeting we will ask you to fill out a questionnaire that asks you about how your health condition affects your communication in a variety of daily situations. We will then ask you some additional questions so that we can get feedback about the questionnaire. For example, do the items ask about relevant situations in your life? Are there other situations we should include? Do you have suggestions for improving the wording or format of the questionnaire to make it easier to use?

To participate in this study you must meet the following criteria:

1. Age18 years old or older

2. Diagnosis of a communication disorder or a health condition usually associated with communication disorders. We are currently enrolling people who have communication changes after stroke; people who have ALS; or people who have had cancer of the larynx or tongue. We would also be interested in meeting with people with other types of communication disorders such as stuttering, Parkinsons Disease, or Cerebral Palsy as some examples.

3. Regardless of your communication disorder you must still be using speech as your main method of communication.Your speech may have changed due to your condition, and you are encouraged to participate even if your speech is not "normal" to you. However, your speech must be reasonably understood by other people. For example, your speech should be adequate to successfully interact with people in your community such as a clerk in a store. If you rely entirely on a computerized system to communicate (AAC), you are unfortunately not a candidate for this study, although you will be a candidate for future studies. If you have had a laryngectomy and you use an electrolarynx or a voice prosthesis, you are definitely encouraged to participate in this study.

4. You must be available for an in-person meeting with research personnel from the University of Washington. We can meet with you at the university; or we can travel to your home or other location that you prefer in the greater Puget Sound region. Reimbursement for local travel expenses (parking or taxi) is available as well as $25.00 for participation.

If you are interested in participating or need additional information, please contact us using the information below (if you choose to use emaill, please be aware we cannot assure the confidentiality of information sent by email).