Project Update: Fall 2004

Longitudinal Study: What are the outcomes to date?

Our last update described the components of our Think and Link email interface designed to support the basic functions necessary for receiving, composing and sending email when the computer user has severe cognitive impairments. It announced the success of the first six longitudinal participants in becoming independent users of the Think and Link email system. These six email users continue to report a high level of satisfaction with their email systems. They periodically complete “goal attainment scales” designed to measure the success of the project in meeting their own individually established email goals. The data show that each participant is achieving “more than expected level of success” for their primary email goals. The participants report receiving different benefits from having access to email including (1) increased feelings of social connection; (2) increased self esteem due participating in a modern, mainstream activity similar to nondisabled peers; (3) reduced boredom from having a new leisure activity; and (4) improved cognitive function as a result of the stimulation from emailing. All of the participants have asked to continue on the project.

            In addition to the goal attainment scales, the project continues to evaluate a wide range of statistics that are summarized each week for every longitudinal participant. These statistics help us to troubleshoot any problems (e.g., a significant drop in email activity) as well as analyze potential changes over time in areas such as email efficiency and message complexity. Below is a sample chart from one of our longitudinal participants showing the range of email metrics that is analyzed by the research team each week. Our last update described the components of our Think and Link email interface designed to support the basic functions necessary for receiving, composing and sending email when the computer user has severe cognitive impairments. It announced the success of the first six longitudinal participants in becoming independent users of the Think and Link email system. These six email users continue to report a high level of satisfaction with their email systems. They periodically complete "goal attainment scales" designed to measure the success of the project in meeting their own individually established email goals. The data show that each participant is achieving "more than expected level of success" for their primary email goals. The participants report receiving different benefits from having access to email including (1) increased feelings of social connection; (2) increased self esteem due participating in a modern, mainstream activity similar to nondisabled peers ; (3) reduced boredom from having a new leisure activity; and (4) improved cognitive function as a result of the stimulation from emailing. All of the participants have asked to continue on the project. In addition to the goal attainment scales, the project continues to evaluate a a wide range of statistics that are summarized each week for every longitudinal paticipant. These statistics help us to troubleshoot any problems (e.g., a significant drop in email activity) as well as analyze potential changes over time in areas such as email efficiency and message complexity. Below is a sample chart from one of our longitudinal participants showing the range of email metrics that is analyzed by the research team each week.

            One challenge for three out of our six participants is initiating email. Although they can email independently and report enjoying sending and receiving email, they benefit from prompts to check their email and write to their partners. We have responded to this issue in several different ways. We trained several careproviders in effective ways to prompt the participants. Additionally, for several of the participants, it appeared that receiving more email might increase their initiation. The notion was that they needed to have mail in their inbox each time they checked in order to reinforce the emailing behavior. To address this issue, we recruited volunteer email buddies (see section below) and/or prompted existing partners to increase their frequency. Initiation disorders are common in the brain injury population due to impairments in "executive functions" and in "memory processes" both of which are common difficulties. We will continue to evaluate methods for addressing initiation.

            We have recruited our next two longitudinal participants who live in a longterm care facility rather than assisted living. The model for using email in this facility will be to engage in email as a structured recreational activity that will be supervised by facility staff. Thus the participants will not be expected to check their email independently, rather they will have set times where they can use the email with support. The facility staff will be using training and support procedures developed on the project in order that they know how to teach people with severe memory impairments a set of procedures. Follow this link to see a description of the training procedures. Our partnership with the long-term care facility is helping us to develop stand-alone materials that do not require the input from researchers.

            One of TAL's major achievements this past term was developing and implementing a volunteer email buddy program. There were several participants who either did not have any family or friends they could email or who wanted additional email buddies. To respond to this need, we developed a volunteer email buddy program. Community volunteers were recruited who had an interest in assistive technology and in learning about brain injury. Training included education about brain injury/disability advocacy, the design of the TAL email interfaces and methods for writimg emails that would facilitate an exchange. There are a range of volunteers including high school students and a senior citizen. All of the volunteers and their longitudinal participants report satisfaction with this program. Volunteer Program details.

Below is a list of project priorities for the upcoming term:

• Begin longitudinal participants #7, #8 and #9 who live in a long-term care facility and would email in a supervised recreational setting
• Continue piloting and refining the training tools to make them understandable to laypeople in order that care providers could teach even severely impaired learners the email procedures
• Continue developing the caregiver interface that would allow care providers to add new email partners and alter features on the email interface such as color, font and layout
• Evaluate and respond to outcomes from investigating methods to address initiation disorders
• Continue to analyze outcome data on longitudinal participants
• Complete write up of case studies detailing outcomes on the first four longitudinal participants.