Project Update: Fall 2003

Activities with Longitudinal Research Participants

Think and Link continued to learn more about how to make email accessible to people with cognitive impairments and to study the effects of email use on people's sense of social connection. To date, all six of the longitudinal participants recruited to participate in the research project are successful users of the Think and Link email system and all report a variety of benefits. While the longitudinal participants share the challenge of severe cognitive impairments as a result of acquired brain injury, they represent a variety of ages, backgrounds, cognitive and psychosocial profiles and stated goals for wanting to learn to use email.

We have developed an email system in Java that has been extensively tested on Unix/Linux and Microsoft Windows operating systems. All of the interfaces support the basic functions necessary for receiving, composing and sending email. There are also variety of email features that can be "turned on" in an individual user's interface depending upon his or her needs and capabilities. An example of such an extension is the addition of an archive message function to store "sent mail" for users who are not confused by the additional buttons and have the ability to reference past messages. Two of the current longitudinal participants use this archiving function.

A recent focus of the project has been to develop and pilot a multiple user system that allows several people to have their individual email interfaces on the same computer. This has proven to be a viable set up for our partner supported living facility. They have placed one of the Think and Link computers in their dayroom and currently have three longitudinal participants accessing their email on this computer.

Another research focus has been to evaluate successful methods for teaching people with severe memory impairments new procedures, such as the steps necessary for using the Think and Link email system. We completed and submitted the manuscript describing a study demonstrating that systematic instruction containing features such as sufficient practice; chaining together the discrete email steps; error-free learning and encouraging reflection on performance were effective techniques for teaching people with severe memory impairments to utilize a seven step email procedure. Our current focus is to investigate ways to computerize the training and lessen the dependency on skilled instructors. An extension of this work is our ongoing development of instructional and support materials for care providers.

Perhaps our largest challenge has been the intensity of resources required to set up, train and maintain the computers. We have established that it is possible for people with significant cognitive impairments to learn to use email and that this capability has significant social benefits. However, we have a team of researchers available to troubleshoot, provide training as needed including booster or review sessions and to give hands-on technical support. One of our challenges in the upcoming year will be to develop methods of support and training that are effective and usable by the people in the users' own environments. We are currently preparing to pilot the interface using a windows environment in order to make it more compatible with existing commercial systems. This fall we will also complete and begin to pilot the prototype of our caregiver interface t hat allows careproviders to monitor email use and change features on the interface as necessary.

Each of the longitudinal participants provides a rich data source for learning about email use. We analyze such characteristics as the frequency, purpose, length and complexity of incoming and outgoing emails. It has been interesting to observe the unique profiles of use that are exhibited by the different users. Examples of different data charts looking at specific features over time are inserted below. In the upcoming year as we add participants and collect more data, we will be able to analyze longitudinal features of email.

Below are excerpts from emails with our current longitudinal participants all of whom have requested to continue on in the project:

• "For me, depression is difficult. One of the assets of this is that my attention on EMAIL changes my own focus, and the depression looses space."

• "I'm enjoying this email project more than I expected I would. I sure hope I can keep this computer when the project ends."

• "I love [email]! I think that it has dramatically affected my own cranial ability and willingness to do many things that seem hard. [Email] seemed very very hard at first. It still is not exactly easy, but I feel like the benefit is quite visible to me. Some "NEW" part of my brain is growing."

• " I was thinking today that "I'm really glad that this email study is going on and that we are able to use it to stay in touch. I'm hoping that they will expand the service so that more and more people with injuries can take advantage. I was telling my sister today, how you and I have been able to say hello and share bits and pieces ofour lives again now that we have email as a means of communicating?I told her a little about the length of time that we've know each other, how we've always been able to joke around and have fun, how we've shared important parts of our lives together?you know, our struggles and our successes, our fears and our hopes."

We completed the formal analysis of our Year One surveys and focus groups which provided a rich picture of the perspectives of people with cognitive impairment and their significant others on issues related to email communication. This work guided much of the development activities described above. The paper has been submitted for publication. Some of the pearls of wisdom offered by the survey respondents and focus group participants include:

• Develop a system by which the computer can inform the user about their limits sending aparticular partner e-mails?"You've already sent your mom a message today. Wait until tomorrow."

• There needs to be some method to keep people's attention while they are working on email. How about extending the "sleep" time so the computer screen doesn't fade if the person doesn't keep typing?

• Make it simple

• Make it so that it doesn't "trick you" ---that the screens don't just go away.

• Keep print cues short, just a few works

• Have options for background color, print size, etc.

• Limit size of message archive, to avoid confusion.

We have just begun developing a volunteer program to look at the utility of having volunteer email buddies for individuals who indicate they would like to have email communication with people but do not have any available partners. We will be looking at issues related to satisfaction and comparing email behavior with those who have volunteer partners with that of individuals who have self selected known partners.

We are also excited to have found a partner longterm care institution with severely impaired residents who would not be expected how to learn to email independently, but could engage in email as part of a facilitated recreational activity. We are in the initial stages of developing an email system and support materials that could best be used in this setting.

The project has enjoyed a second productive year. The work is deeply satisfying and all of the researchers wish to express their admiration and appreciation for the knowledge they are gaining from the longitudinal participants and their careproviders.