Literature study

Abstract

Aphasia is a condition commonly caused by stroke, which damages the part of the brain responsible for communication. Short term memory loss involves decreasing one’s ability to retain recent information. The combination of these two conditions makes it vital to have a daily routine with structured time management. Unfortunately, maintaining and making new relationships can be difficult, due to complications with speaking and remembering faces. From a societal perspective, a way to help patients is by empowering them by using new technologies for example. Besides that, assistive technology can play a role in their lives since they are tailored to them specifically and aim to make their life easier. To design such a product, a human-centred approach is applicable. This approach puts the focus on the needs of the users. A way to design a specific product is by co-designing, where the participant is involved during the process.

Introduction

This study is part of a project in which members co-design with a person that has short term memory (STM) loss and aphasia. It is important to properly understand the conditions that the co-designer is facing. This allows for the proper accommodation of the co-designers symptoms throughout the project when preparing for meetings and designing the product. This will make this shared experience as good as possible and aid the design process itself.

Literature Study

This literature study examines different research topics including the theoretical introduction of disabilities, societal trends, human-centred design, and co-design.

Different literature is researched about the theoretical aspects of aphasia and STM impairment. The main characteristics and influences in everyday life are described.

Aphasia is a condition, which limits the ability to communicate. It is most commonly caused by a stroke that affects the left hemisphere of the brain (National Aphasia Association, 2019). This hemisphere includes the Broca’s area, which is responsible for naming objects and coordinating muscles involved in speech and the Warnicke’s area, which is in control of language comprehension (Wortman-Jutt, 2016). There are two different types of aphasia; fluent aphasia, which is caused by damage in the Wernicke’s area and non-fluent aphasia, which arises from damage in the Broca’s area. Some forms of treatment include language therapy and transcranial magnetic stimulation (Wortman-Jutt, 2016).

Aphasia greatly affects the patient's emotional state. People with aphasia tend to have social isolation and higher rates of depression (Bullier et al., 2020). Patients with aphasia also have limitations in activities such as difficulty in getting a job (Lee, 2015).

The lives of people with aphasia are very much made of routines that mainly take place at home. Working with time management is therefore essential. Unfortunately, learning new activities can be close to impossible (Natterlund, 2009).

Maintaining and building relationships can be challenging for people with aphasia. Typically, family relationships were not lost but did become more difficult due to the passive role of the person with aphasia. Communication training and thus meeting people they can conform to can be valuable in making them feel less lonely (Ford et al., 2017).

2.1. Short term memory loss

Short term memory (STM) indicates various systems that are involved in the retention of information for a relatively short time. The duration and amount of information to be maintained are limited (PMC, 2019). The paper published by G. Miller revealed that people can only remember 5-9 things at a given time (Ferster, 2017). STM impairment involves forgetting information that has been recently shown. Its features are dependent on the underlying cause, which can be i.a. strokes, brain aneurysms and traumatic brain injuries (PMC, 2019).

People with short term memory loss tend to get out less often in unfamiliar environments. They participate less often in community activities, which restricts them to make new social contacts. Furthermore, the inability of recalling faces, names and times impedes their social performance (Davidson et al., 2012).

Certain strategies and memory aids are helpful for people with STM loss such as leaving things in noticeable places, retracing steps, keeping diaries and calendars, but also technological devices such as alarms and timers (Jamieson et al., 2015).

2.2. Societal trends and the changing perspectives on disability

When considering the empowerment (Boumans, 2012) of the co-designer, it can be concluded that they are in control of their own life and are capable of decision making. Empowerment is about shifting the balance from being determined, to self-determination. Technologies create new possibilities and thus can be seen as a way of empowering people. When looking at healthcare, however, there are still a lot of options where technology could be implemented (Andrade et al., 2014).

The recovery phases of patients with aphasia or short term memory loss consist of the acute, revalidation and chronic phases (Bos et al., 2015). The co-designer finds themselves in the chronic phase which means his conditions cannot improve anymore but are stable, and that he does not follow therapy sessions anymore. 

In recent years no real change can be found regarding the societal view on aphasia and STM. According to AfasieNet, awareness about aphasia should increase in the Netherlands and therefore they organize a week for aphasia (AfasieNet, 2021).

2.3. Introduction to Assistive Technologies

Assistive technologies (AT) are “products, equipment, and systems that enhance learning, working, and daily living for persons with disabilities” (ATIA, 2015). According to Occupational Therapy Brisbane “having the right assistive technology for memory loss can be the difference in living an independent life or not” (Occupational Therapy Brisbane, 2020). AT is usually tailored to a specific participant. To assess the degree of satisfaction with a product, participants can fill out the “Assistive Technology Selection and Assessment Template”(Martinez et al., 2018). The appropriation of an AT can be improved by co-designing with the intended user, however, the social surroundings of this user should also play a part in the design phase according to Calmels et al. (2021).

Examples of technologies that can help with memory loss or aphasia:

• “The WatchMinder allows the user to create discrete cues throughout the day to perform specific tasks or modify or reinforce specific behaviours.” (WatchMinder, n.d.)

• A wearable device that can have features like an agenda, alarm, phone finder and receiving texts.  

• Smartpens, such as Livescribe: “Record everything you hear, say, and write, while linking your audio recordings to your notes. Quickly replay audio from your Livescribe paper or a computer with a simple tap on your handwritten notes.” (Livescribe, n.d.)

2.4. Human Centred Design

Human-centred design is a design practice that puts the focus on the needs of users and their context. This is done with the goal of creating products that are appropriate for them. To do this, the designer must immerse themselves into the participant’s life and perspectives of the user and understand the right problems the user is facing. Doing so should result in products, services and systems that improve and empower the lives of its consumers (DC Design, 2017).

2.5. Co-design / Participatory Design

Co-design involves creating and designing together with stakeholders, which in this case is mainly the participant. This is done so that the needs and expectations can be met with their involvement throughout the development of the design process. Moreover, users are involved for numerous reasons including giving valuable personal information and insights, giving feedback, and stopping incorrect directions and assumptions. In doing this a product can be created that should meet the needs, expectations and wants of the user to a greater extent. 

In the paper (Wilson et al., 2015) about aphasia which applied co-design strategy, the importance of using tangible design languages as a co-designing method was emphasized. According to the study, images, gestures, demonstrations, physical artefacts and spaces can be used as tangible design languages. Specifically, photos and sketches are used as images to make story grids, and photo diaries which can help understand design spaces, supporting co-creation. Also, target interactions were modelled with software or hardware which can contribute to an explanation before consulting co-designers. Then, prototypes, avatars, and story grids are used as physical artefacts. Concerning these, in this project, we plan to help increase a co-designer’s understanding of the project by providing prototypes. Through observing the process of experiencing prototypes directly, difficulties of expression and limitations of receiving specific feedback from the co-designer will be able to be overcome. In addition, when the use of tactile and visual senses increases, it may help the co-designer understand and remember so that he can actively participate in each process. Also, by leaving the record as a form of image documents we expect them to be used as materials that help the co-designer with memory and feedback on the project process.

In a paper (Crosskey, 2014) about co-designing with seniors with memory loss various co-design strategies are planned, carried out and discussed. A major takeaway is that you should reduce distractions or confusion in co-design sessions as much as possible, to achieve greater focus and engagement with the participant. This can be done by having workshops be one on one and discussing fewer topics or objects at a time. This allows for specific feedback. It is important to maintain respect for the participant’s dignity, in order to increase their engagement and commitment. When using generative tools with the participant that may seem childish with their crafts, it is important to convey that the sessions are graduate-level research.

Additionally, using appropriate language empowers and respects their personhood and develops a more trusting and open relationship. It is suggested to deliberately create a comfortable, supportive, and non-distracting environment by working in a private space and facing the participant away from remaining distractions such as a window. Using smaller stools for researchers and taller stools for the participant can also empower them to lead co-design and discussion sessions as experts in their experiences. In each workshop, you should create toolkits that complement the workshop. The toolkits should have a variety of materials that have different textures and colours, different levels of abstraction (explicit, suggestive, open) and express different types of emotions or attitudes. These cater to varying participant preferences and are useful in creating various scenarios and relationships with its different possible associations.

3. Engaging with the practice

The practice of human-centred design is used throughout the project as we aim to create a product that is fitted to a specific user. In doing so we have to immerse ourselves into the world and community of our co-designer. We attempt to do this with interviews and observational methods. As we work so closely with our co-designer, we must take care to remain ethical. This is concerning privacy issues as we should keep the participant anonymous and not release private information. Furthermore, there is a risk of designing a product so tailored to the user that it may manipulate his actions and reactions to the product.

3.1. Visual Storyboard

Discussion and conclusions

In conclusion, this study has touched upon practical and theoretical knowledge regarding John Doe. From these findings implications for the project’s future processes arose. From past co-designing reports, the significance of using tangible methods can be seen. This project has been mainly focusing on interviews. However, to gain new perspectives, it might be good to use a diary or get new insights from his social circle. Furthermore, another implication for future context mapping can be creating a comfortable, empowering, and non-distracting space for more constructive feedback. Lastly, something to consider in the future design processes is to stress the use of testing different types of prototypes on the participant to improve the final design.

With the findings in mind, a design challenge could be generated. The design challenge is that we want to co-design a familiar and intuitive product that fits into the routine of the participant. It should serve as a reminder for him regarding past, current and future tasks. This product would make use of his better memory retention of visual elements and routine tasks.