We conducted a survey to determine the nature of the communication challenges associated with ventilator use. Fifty-three ventilator users responded to the survey, either during a one-on-one interview or by self-completion over the Internet. Most respondents reported having speech problems, but surprisingly few had participated in speech therapy. Respondents indicated that the most successful nonspeech modes of communication involved the use of electronic/computer systems or sign language/gestures, and the most successful means of producing speech involved the use of speaking valves and ventilator adjustments. We hope that the results of this survey inspire speech-language pathologists to play a more active role in the management of clients who use ventilators, and we offer specific suggestions as to how this might be done.
An externally driven ventilator system is usually required when respiratory impairment is severe enough to threaten survival. Although the primary purpose of a ventilator is to provide fresh air to the lungs and airways, its use has consequences that reach far beyond its life-sustaining role. One important consequence of ventilator use is that communication is often compromised (Gibbons, 1996; Hoit, Shea, & Banzett, 1994; Tippett & Siebens, 1995). Without adequate communication, an individual's quality of life can suffer, opportunities to participate in social and vocational activities can be limited, and control over important life decisions can be jeopardized (Bach, 1982; Silverstein et al., 1991; Wang, Bach, Avilla, Alba, & Yang, 1994).
As speech-language pathologists, our goal is to maximize the communication abilities of our clients, including those who are ventilator-supported. To accomplish this goal, it is essential to understand the types of communication challenges such clients face so that we can design our treatments accordingly. One way to do this is to query ventilator users directly.
Toward this end, we conducted a survey to learn more about how ventilator users perceive their communication abilities, challenges, and experiences. From this survey we have gained insight into the communication difficulties most often encountered and ways in which communication and quality of life might be improved, all from the ventilator user's point of view.
A 45-item questionnaire was developed to acquire information from ventilator users (see Appendix). One of two procedures was used to administer the questionnaire: (a) one-on-one interview with an investigator or (b) self-completion. For the one-on- one interview, an investigator read aloud the questionnaire items and probes were used (e.g., 'Tell me more about that") to elicit more specific responses when necessary. These interviews were videotaped. For the self-completion procedure, an introductory letter, participant consent waiver form, and computer-formatted survey were provided on several Internet sites of interest to ventilator users. The self-completed questionnaires were returned by either ground mail or electronic mail.
A total of 53 questionnaires were filled out. Of these, 19 were obtained via interview and 34 via self-completion. All of the ventilator users who we asked in person to participate agreed to do so. The response rate of the ventilator users who were contacted over the Internet could not be determined.