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THE SPINAL CORD INJURY PEER INFORMATION LIBRARY ON TECHNOLOGY (SCI PILOT)

T. Nantais (1,2), M. Tonack (3,1), F. Shein (4,1), G. Papp, (1), P. Stoddart, (4,1), H. Jacoubsen (1), M. Pinto (1), N. De Franco (1)
(1) Toronto Rehabilitation Institute, Lyndhurst Centre; (2) Canadian Paraplegic Association Ontario; (3) West Park Hospital; (4) Bloorview MacMillan Centre
Contact: tnantais@scpilot.com

Daily life for individuals with a high-level spinal cord injury often involves the use of assistive technology (AT) for communication and control needs such as using a telephone, writing a note, and turning on a light. There is no question that assistive devices can theoretically enable someone to accomplish important tasks independently. But before such devices can be of any practical use, they must be chosen, justified, financed, purchased, installed, configured, mastered and maintained. Both clinical experience and the assistive technology literature suggest that this process can be prolonged and challenging.

A lack of information about other consumers' experiences with AT is often part of the problem. The purpose of this project is to develop and disseminate a practical resource about the process of incorporating assistive technology into daily life. The basis for the resource will be the described experiences of approximately 30 assistive technology users with quadriplegia from traumatic spinal cord injury. As such, the resource is intended to provide "virtual peer support" on the subject of assistive technology.

The target audience for the resource includes individuals with a recent spinal cord injury as well as their service providers. Successful use of assistive technology often comes only after a diverse array of problems have been solved. This message, illustrated with people's real experiences, may help consumers prepare for the possibility of a complicated process, and identify practical strategies for dealing with these complications. It will show them that others have persevered and ultimately benefited from the effort. It will help service providers in their efforts to continuously improve their understanding of the assistive technology adoption process.

The resource is called the Spinal Cord Injury Peer Information Library on Technology (SCI PILOT). It will be divided into two major sections. The first will be a series of summaries of individuals' experiences with assistive technology. This section starts with a table of contents describing the people whose stories follow. Each entry in this list will include a brief description of the individual's circumstances (e.g., age, sex, injury-level, age at injury, pre- and post-injury careers, and major goals for assistive technology). When the reader picks a person from the table of contents, they will find 2-3 pages of information about that person's experiences with assistive technology. There will probably be several photos as well, and if they are viewing the resource on a computer, there may be some short video clips of the person using the technology described. The information presented in the story will be the direct result of interviews with that person.

The story will focus on the strategies that this person has found for putting technology to work for them, and will focus on the following kinds of questions: What does technology allow them to do? What was the learning process like? Are there personal goals that are not currently being met by the technology they use? Why is this? What advice would they give someone with a new spinal cord injury about the process of choosing assistive technology? The stories will contain participants' positive and negative experiences.

Besides the stories, the resource will have one other major section containing 1-2 page issue papers on topics of general interest. These topics will be chosen based on recurring themes in the interviews. Project staff will write the issue papers by pulling together recommendations from a number of participants instead of focusing on the feedback of one person.

A preliminary edition of SCI PILOT is scheduled for release in March, 2000 (www.scipilot.com). The final edition will be available in June, 2001. The resource is being released in stages so that reader feedback can influence its design.

Literature Review

Interest in evaluating assistive technology has increased dramatically in recent years (Smith, 1996; Scherer, 1993; DeRuyter, 1995, 1997). This trend is partially the result of a more general drive toward better accountability in health care (DeRuyter, 1995), but it is also motivated by reports of assistive devices being abandoned by consumers (Garber & Gregorio, 1990; Phillips & Zhao, 1993). Consequently, there is a growing list of measurement tools designed to efficiently evaluate such qualities as the psychosocial impact of an assistive device (Day & Jutai, 1996) and user satisfaction (Demers et al., 1996). The development of measurement tools can be seen as particular cases of a more general push to gather better information from consumers about their interactions with assistive technology. Throughout the 1980's, various writers were suggesting that better communication was needed between assistive technology consumers and service providers to make assistive devices truly useful (Bryant, 1982; Roessler, 1986; Vanderheiden, 1987). The 1990's have seen an increase in study of consumer reaction to assistive technology.

Brooks (1991) conducted a mail survey of scientists and engineers with a disability about assistive device use from the "social-psychological" standpoint. Generally, users considered the devices necessary and beneficial, but they also indicated support for adjectives such as "inconvenient" and "restrictive." Only 11% said that they always felt proud of the devices that they use. When respondents were asked to identify areas in assistive technology requiring further research, "...their primary interest was in the pragmatic and economic concern for acquiring assistive devices."

Batavia & Hammer (1990) employed a qualitative methodology to gain an understanding of the criteria by which consumers judge assistive devices in general. Two focus groups were conducted to identify these factors, with the two panels consisting of consumers with mobility impairments and sensory impairments respectively. These focus groups identified general positive qualities for assistive devices such as effectiveness (i.e., in improving living situation and increasing independence), affordability, operability (i.e., ease of use) and dependability. The main rationale for studying assistive technology from the consumer perspective was to learn how to avoid assistive device abandonment. Batavia & Hammer (1990) also believed that these criteria, once fully researched, could lead to a process for "...training recently-disabled persons to use the criteria in making purchasing decisions...."

Bell & Hinojosa (1995) conducted a qualitative study of the impact of assistive technology on the lives of three individuals with quadriplegia. This study illustrates in detail the types of problems consumers can face when trying to adopt useful assistive devices. The experiences of one consumer, identified as Bob, paint a stark picture of assistive technology in the real world. During his initial rehabilitation after a C3/4 spinal cord injury, Bob received a number of assistive devices. When the researchers visited Bob six years later, they found the following situation:

"Entrance and exit to [Bob's] room is impeded by a narrow hallway with a sharp turn into the rest of the apartment. As a result, Bob is dependent on others to leave or return to this room. ... Bob had a power wheelchair, with a recline function, that he could access with a chin control. He rarely used this wheelchair due to severe neck pain when he did, and due to his room's inaccessibility to the rest of the apartment. Bob seemed bitter about and dissatisfied with his power wheelchair. He stated that it was prescribed for him and he was stuck with it."

Scherer (1993) has explored in great depth the complicated relationship between assistive devices and the people who use them. One of the primary goals was to give consumers a forum to present what they saw as the important issues around assistive technology use. As a result of the research, Scherer (1993) proposed a model that takes into account elements of (a) the individual's personality (e.g., patience, technical comfort, adjustment and outlook), (b) his or her environment (e.g., funding, expectations of friends and family members, social support), and (c) features of the technology itself (e.g., complexity, aesthetics, technical support services). Scherer (1993) goes on to recommend a highly flexible service delivery system that offers prospective consumers better information about assistive devices, trial periods, adequate follow-up and peer support in the use of technology.

These research studies have documented a diverse array of issues that can influence a consumer's successful adoption and use of assistive technology. Many of them advocate for better information-sharing between consumers, service providers, developers and researchers about the "real-world" impact of particular assistive technologies. The SCI PILOT resource is intended to be one mechanism for this type of communication.

Methods

The key to making SCI PILOT a good resource is to allow the participants to shape it. Qualitative research methods are well suited to this goal because they facilitate objective analysis of experiences from the perspective of the people who have lived those experiences.

Participants will be purposely recruited to achieve a diverse group in terms of age, gender, ethnic background, injury level, geographical location, and urban vs. rural setting. Everyone who participates will have had a spinal cord injury for at least two years, resulting in some degree of quadriplegia. All participants will have some experience with assistive devices. Participants will be drawn from five cities in the United States and one city in Canada.

Information will be gathered from participants using semi-structured, face-to-face interviews. Each interview will last approximately two hours, and will take place in whatever environment(s) the technology is (or was) used. The interviewer will take cues from the participant and prompt for more information in the areas the participant identifies as important. Photos and brief videos will be taken for illustration if the participant agrees to this. The interviews will be taped for later transcription. These interview transcripts will be the basis for the content in SCI PILOT. The team will condense each transcript into a 2-3 page summary of the salient issues.

When an appropriate number of summaries have been written, a Content Review Team will meet to discuss the process and the product. This team will be made up of 6-8 assistive technology consumers and service providers. Members will review the summaries and the overall analysis framework to suggest changes that make the summaries more faithful representations of what participants are saying. The Content Review Team will also address more general issues, such as the overall relevance of the information provided in SCI PILOT. As well, the participant who provided the information for a personal summary will review the draft summary, and changes will be made based on his or her feedback.

Once a summary or issue paper has been approved, the publication coordinator will convert it into four formats in preparation for release: print, world wide web, CDROM and diskette. These different versions are intended to make SCI PILOT accessible to as many individuals and organizations as possible. There will be a small charge for the non-Internet versions of the resource (in the neighborhood of $10) to cover the cost of printing and shipping.

Conclusions

Before the onset of a high spinal cord injury people have little reason to know anything about assistive technology. After injury they need to become experts. The SCI PILOT project intends to present consumer accounts of that process as a kind of peer support for newer AT consumers. SCI PILOT is also meant to serve as discussion point for AT service providers in their ongoing pursuit of client-centered practice.

Acknowledgments

The SCI PILOT Project is supported by a grant from the Paralyzed Veterans of America Spinal Cord Injury Education and Training Foundation. We would like to thank the participants who provided the information for SCI PILOT, as well as the Content Review Team for checking our interpretations. Special thanks to Dr. Marcia J. Scherer.

References


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