Ventilator-Supported Communication: A Survey of Ventilator-Users THIS SURVEY MUST BE SUBMITTED BY MAY 31, 1999 SUBJECT'S WAIVER VENTILATOR-SUPPORTED COMMUNICATION:A SURVEY OF VENTILATOR-USERS YOU ARE BEING ASKED TO READ THE FOLLOWING MATERIAL TO ENSURE THAT YOU ARE INFORMED OF THE NATURE OF THIS RESEARCH STUDY AND OF HOW YOU WILL PARTICIPATE IN IT, IF YOU ARE INTERESTED AT THIS TIME. You are being invited to participate voluntarily in the above-titled research project. The purpose of this project is to gather information from ventilator users regarding the challenges of and potential improvements for ventilator-supported communication. You are being invited to participate because you use a ventilator to breathe. If you agree to participate, you will be asked to respond to questions from a survey form. We ask that you complete the survey in its entirety but you may stop at any point and we would still appreciate having the responses to the questions you did answer. If you have any questions regarding this research study, please feel free to contact Heather Lohmeier or Jeannette Hoit at (520) 621-2195 or via email at heather@cnet.shs.arizona.edu or hoit@u.arizona.edu. In addition, if you have questions regarding your participation in this study, you may contact the Human Subjects Committee for the University of Arizona at (520) 626-6721. Submition of this survey will be regarded as your informed consent. 1. Date: Your Email Address: Although this information will be kept confidential,your submission will not be accepted without valid a email address GENERAL INFORMATION 2. Gender (M/F): 3. Residence: 4. Ethnicity: 5. Age: 6. Height: Weight: 7. Date of Birth: 8. Education: VENTILATION HISTORY 9. What happened that made it necessary for you to go on a ventilator? 10. When did you first go on a ventilator? 11. What type of ventilator are you on now? 12. Have you ever been on other types of ventilators? (Y/N) If so, what types? 13. What is your tidal volume? breathing rate? inspiratory time? 14. Do you use PEEP? (Y/N) 15. Can you ever go off the ventilator? (Y/N) If so, for how long? If so, how do you breathe when you do? 16. Who has been most helpful in teaching you about your ventilator? 17. What have you had to learn on your own? 18. What information would you have liked to have had when you went on the ventilator but didn't? MEDICAL HISTORY 19. When were you tracheotomized? 20. Do you have an earlier history of being trached or requiring ventilation? (Y/N) If Yes, please expain: 21. Have you had any other surgeries besides the tracheotomy? (Y/N) If Yes, please expain: 22. Do you have any other medical problems? (Y/N) If Yes, please expain: 23. Are you on any medications? (Y/N) SPEECH/COMMUNICATION 24. What is the first language you learned to speak? 25. Have you had any special training or experience in singing, speaking,or acting? (Y/N) If Yes, please expain: 26. Do you have any problems with your hearing? (Y/N) If Yes, please expain: 27. Did you have any problems with your speech before you started using a ventilator? (Y/N) If Yes, please expain: 28. Is your speech different now than it was before you started using a ventilator? (Y/N) If so, how is it different? 29. How do you feel about your speech now? 30. Do you feel your speech is worse/better/the same now than when you first started using the ventilator? (WORSE/BETTER/SAME If so, how is it different? 31. Do you have any problems speaking? (Y/N) If so, what sort of problems? 32. Can you tell me how your ventilator works to let you speak? 33. How do you coordinate your speech with your breathing? 34. Have you ever worked with a speech-language pathologist? (Y/N) If so, when was that? If so, what did he/she do for you? 35. Have you used any of the following to help you communicate? pencil and paper writing (Y/N) If yes, How successful was it? picture or word board (Y/N) If yes, How successful was it? electronic or computer system (Y/N) If yes, How successful was it? artificial larynx (Y/N) If yes, How successful was it? sign language/gestures (Y/N) If yes, How successful was it? lip reading (Y/N) If yes, How successful was it? speaking valve (Y/N) If yes, How successful was it? talking tracheostomy tube (Y/N) If yes, How successful was it? ventilator adjustments (Y/N) If yes, How successful was it? 36. Who do you talk to on a daily basis? 37. How well do they understand you when you speak? 38. Do you ever try to do anything special to make your speech better? (Y/N) If Yes, please expain: 39. If asked to speak continuously, how long do you suppose you could continue speaking? 40. What activities do you participate in routinely? (recreational/social,job-related, etc.) 41. Do you use electronic mail to communicate with other people? (Y/N) If so, how do you type? Have you ever tried using a voice-activated system? (Y/N) 42. What is your greatest frustration about speaking on a ventilator? 43. What do you think could be done to improve your speech? 44. What do you think needs to be done to improve speech, or communication in general, in people who use ventilators? 45. Comments? Please check your answers then email your survey to: heather@cnet.shs.arizona.edu or snail mail it to: University of Arizona Speech and Hearing Sciences Department P.O. Box 210071 1131 E. 2nd St. Tucson, AZ 85721 ments? Please check your answers then email your survey to: heather@cnet.shs.arizona.edu or snail mail it to: University of Arizona Speech and Hearing Sciences Department P.O. Box 210071 1131 E. 2nd St. Tucson, AZ 85721 AZ 85721