Inspiring confidence in newly diagnosed macular degeneration patients

Abstract

This graduation project is related to macular degeneration. Macular degeneration affects the macula, a central pit on the retina which is responsible for the highest visual acuity due to the densely packed cone photoreceptors. Symptoms of macular degeneration can vary in the early stage from blurred vision to abnormal dark adaptation (Jager et al., 2008) however in late stage macular degeneration symptoms can be much more invasive including partial and complete loss of the central vision. In order to cope with the loss of central vision patients could prescribe to what is called eccentric viewing. Eccentric viewing is a technique where the peripheral vision is used to see. Using eccentric viewing as a method to cope with macular degeneration requires, for optimal results, practice. This can be done through training. This project was originally aimed at designing a training method for eccentric viewing with the use of motivating game elements. By speaking to experts from Visio and Bartimeus as well as patients throughout the research phase it became apparent that eccentric viewing was not deemed necessary. Instead other problems were addressed which had a higher priority in solving. These problems include the lack of provided information after the official diagnosis, the attitude of the ophthalmologist during the diagnosis and the perceived gap between the diagnosis and the Low-Vision clinics. By creating a patient journey and examining the different problems that occur during that journey a choice was made to focus on a combination of the lack of information after the diagnosis and the gap between the diagnosis and the Low-Vision clinics. Six different topics of information were defined which play part in the lack of information. These six topics are: information about the condition, information about aids, make it easier, information about peer support, training / revalidation support and information about involved instances. Together these six topics cover most of the aspects surrounding macular degeneration. To convey this information to the target group a web-based medium is used. Due to the special target group guidelines have been defined which help in designing a website for visually impaired people. This has resulted in a framework where the necessary information can be placed in. Because of time restrictions one of the six topics which was defined was further developed. That topic is ‘Make it easier’. It resulted in a collection of tips from “experienced” macular degeneration patients on making Activities of Daily Living (ADL) easier to perform. In total 20 different tips were gathered through a brainstorm session, an online survey and telephone contact with Bartimeus. These tips were spread over three different themes: cooking, grocery shopping and public transport. Each tip was accompanied by an image, a descriptive text and a spoken quote. Finally an evaluation test has been conducted with two participants to verify whether the proposed design succeeded. The results from the evaluation show the potential success of the design but are not conclusive. Therefore further testing needs to be done with more participants over a longer period of time.