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Perspectives on participation of a person with communication disabilities in a rehabilitation research study TO THE EDITOR: We wish to share our experience with a person with communication difficulties who participated in our rehabilitation research study. To protect the subject’s real identity we refer to our research participant as JD ( John/Jane Doe). When we first found out that JD fulfilled all the eligibility criteria for the research study, we approached JD by phone. We were told by a relative who answered the phone that JD had no hearing and experienced difficulty with verbal communication as well. Our knee-jerk reaction was that JD met one of the exclusion criteria of our study, “difficulty in understanding and following simple commands”. However, upon deeper reflection we realized that this person could understand and still communicate by other means such as reading/writing. So we decided to give ourselves and JD a chance at participation in our research study. Our research program focuses on movement disorders and as a result, we had never encountered such a scenario in our research studies before. So we decided to go out and learn from this experience. JD had indicated to us to send the study information and informed consent form by email. This allowed JD to study the documents in advance of the experiment which allowed extra time to consider participation in our study ‑ as recommended in people with communication disabilities.1 Fortunately, JD’s speech language pathologist (SLP) worked near our research lab and was very happy to join us for the first testing session, to give us a basic understanding of JD’s abilities. The SLP confirmed that JD indeed had profound hearing loss, even with the presence of hearing aids, but on the other hand was also an excellent lip reader. We were instructed to speak slowly (but not laboriously slow) only while JD was looking at us. If JD was not looking, we were instructed to gently draw
attention by a tap on the arm. We (researchers and JD) were initially not sure if lip reading would work because English was not the first language of any of the research assistants. However, to our surprise (and to JD’s), during the course of the experiment lip reading became easier and easier. The next step was to establish the communication style and the SLP asked if JD had brought the iPad that day. JD’s iPad was mounted to the wheelchair (Figure 1) and equipped with communication software (ProLoQuo2Go, iPAD application, www.assistiveware.com) that could convert JD’s typing into spoken words. The iPad was encased in an adapted speaker case (AMDi iAdaptor; AMDi, 95 Sherwood Avenue, Farmingdale, NY, USA) that enabled moving the iPad into position independently and allowed speech output to be audible in a variety of environments. This contraption allowed JD to be close to the secondary communi-
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This document is protected by international copyright laws. No additional reproduction is authorized. It is permitted for personal use to download and save only one file and print only one copy of this Article. It is not permitted to make additional copies (either sporadically or systematically, either printed or electronic) of the Article for any purpose. It is not permitted to distribute the electronic copy of the article through online internet and/or intranet file sharing systems, electronic mailing or any other means which may allow access to the Article. The use of all or any part of the Article for any Commercial Use is not permitted. The creation of derivative works from the Article is not permitted. The production of reprints for personal or commercial use is not permitted. It is not permitted to remove, cover, overlay, obscure, block, or change any copyright notices or terms of use which the Publisher may post on the Article. It is not permitted to frame or use framing techniques to enclose any trademark, logo, or other proprietary information of the Publisher.
CORRESPONDENCE
Vol. 50 - 2014
Figure 1.—iPAD mounted on a wheel chair as a form of complementary communication device.
EUROPEAN JOURNAL OF PHYSICAL AND REHABILITATION MEDICINE
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C. P. PHADKE Spasticity Research Program, West Park Healthcare Centre, University of Toronto, Toronto, ON, Canada Department of Physical Therapy, University of Toronto, Toronto, ON, Canada Faculty of Health, York University, York, ON, Canada
[email protected]
L. SHAW Augmentative and Alternative Communication Clinic, West Park Healthcare Centre, University of Toronto, Toronto, ON, Canada J. KUNJU KUNJU
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cation device at all times. Although this mode was available we did not need to use it during our experiment. For most part in order to understand what JD wanted to say, we relied on JD’s natural speech which was laborious because of other neurological conditions. However, with some practice in a short time, we were able to understand the spoken words better. So we agreed that if we were not able to understand at any point, then JD would use the iPad. We quickly piloted this technique prior to starting data collection and ascertained that it worked. In addition, we also printed out small cards with instructions for the next step of the experiment. We also had an extra laptop with power point slides with instructions to our participant regarding the next steps in the research study. We used hand signals to indicate direction in which we wanted JD to move during the course of the experiment. We also used one quick wave of a red elastic band to signal JD to start the movement required in the research study. Although initially not arranged, a close relative of our research participant was able to join us in the middle of the study and from that point on acted as an official interpreter when needed. JD though, was very independent and still relied on communicating with us directly throughout the experiment. To summarize, we found the following strategies helpful: 1) sending informed consent and study information by email ahead of time; 2) receiving tips from the SLP regarding best ways to communicate; 3) being open to learning a new way of communication where your lip movements are being read; 4) allowing more time and patience for the experiment than usual; 5) displaying instructions on cards or laptop screen; and 6) using visual signals to indicate start of movement. The experience was rewarding both for us as researchers and JD as the participant. It prepared us for future scenarios where we could test someone else with communication difficulties. It also afforded JD an opportunity to learn about a new research study and be an active participant in the process of generating knowledge.
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This document is protected by international copyright laws. No additional reproduction is authorized. It is permitted for personal use to download and save only one file and print only one copy of this Article. It is not permitted to make additional copies (either sporadically or systematically, either printed or electronic) of the Article for any purpose. It is not permitted to distribute the electronic copy of the article through online internet and/or intranet file sharing systems, electronic mailing or any other means which may allow access to the Article. The use of all or any part of the Article for any Commercial Use is not permitted. The creation of derivative works from the Article is not permitted. The production of reprints for personal or commercial use is not permitted. It is not permitted to remove, cover, overlay, obscure, block, or change any copyright notices or terms of use which the Publisher may post on the Article. It is not permitted to frame or use framing techniques to enclose any trademark, logo, or other proprietary information of the Publisher.
CORRESPONDENCE
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Spasticity Research Program, West Park Healthcare Centre, University of Toronto, Toronto, ON, Canada N. E. MOGHADDAM
Spasticity Research Program, West Park Healthcare Centre, University of Toronto, Toronto, ON, Canada F. ISMAIL
Spasticity Research Program, West Park Healthcare Centre, University of Toronto, Toronto, ON, Canada Division of Physiatry, University of Toronto, Toronto, ON, Canada C. BOULIAS
Spasticity Research Program, West Park Healthcare Centre, University of Toronto, Toronto, ON, Canada Division of Physiatry, University of Toronto, Toronto, ON, Canada EUR J PHYS REHABIL MED 2014;50:0-0
References
1. Cameron L, Murphy J. Obtaining consent to participate in research: the issues involved in including people with a range of learning and communication disabilities. J Learn Disabil 2006;35:113-20. Acknowledgments.—The authors would like to thank our participant and the West Park Foundation and Ontario Federation for Cerebral Palsy for supporting this work. No conflicts of interest.
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