LITERATURE STUDY
ABSTRACT
To design for a specific user (with a disability, in this case memory impairment) several factors need to be taken into account. For this some examples about previous design studies were looked at. From this it could be extracted that these users usually prefer a more simple and discrete solution as to not put their disability in the spotlight. Another important aspect is co-design, this will allow for richer insights and more variation in solutions making it fit the end user(s) better. Using papers of co-design with participants with a similar disability the best suited co-design methods were found to be rapid prototyping with feedback and interaction from the co-designer (the participant), conducting interviews and the “future workshop”. Further, based on the interviews with the participant a persona and design challenge was created. This persona can later be used for decision making and availability of the information.
INTRODUCTION
The study defines the scope of the project and the conditions the participant faces and how to design with and around them. This is done by analyzing co-designing in general and how the participant’s impairment influences the steps and methods which can be used in order to design the most appropriate product for the participant.
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The study is divided into different subheaders which highlight different topics relevant to the project, as well as introducing a wider context and background.
2.1 Empowerment
Even though Europe is on the forefront of inclusivity of disabled people, a paper on barriers for social participation (Hästbacka, Nygård, & Nyqvist, 2016)(p. 209) shows that some of the main barriers disabled people encounter are negative attitudes, stigmatization and discrimination. It also states that it is crucial to acknowledge the capabilities of and the potential in disabled people. One of the factors which uncorks these capabilities and potential is empowerment.
Empowerment is described by Boumans (2012) as “a critical concept in which the relationship between the individual and society, a power issue, is central. It is about shifting the balance of being determined towards determining oneself (becoming more 'subject'), so that real possibilities for action arise to fill your life yourself and with others. This goes along with a struggle against oppressive systems that limit the possibility of being the subject of life.”(Boumans, 2012) The main oppressive system in this case being the way a disabled person is limited.
2.2. Assistive Technologies
Assistive technology (AT) can be described as any system that helps people with disabilities to do tasks better or easier. Examples of this are walking canes which help people walk, to closed captions on television to help deaf or hard of hearing people. When designing any AT, especially for a cognitive impairment, it is important to keep the users physical and sensory abilities in mind. (LoPresti, Mihailidis, & Kirsch, 2004) (p. 9) Some users might have multiple impairments and when designing a product it is important to make sure that the user is able to benefit from it. The paper further explains that customizability is often important to make the most use of the individual users capabilities.
There has been research done into AT for people with short term memory loss or similar cognitive impairments. Examples are LoPresti et al. (2004) who researched multiple studies which contained different devices for people with cognitive disabilities. It describes that for people with deficits of self-initiation a device which gets the users attention is better at motivating users to do tasks and it describes how devices with calendar functions, to do lists and cues to perform tasks have shown to be significantly effective in empowering the users. Wilson, Emslie, Quirk, Evans, and Watson (2005) published a paper with the results from a trial where people with TBIs were given a paging system to help them with their daily activities. The paper concluded the pagers to be effective in helping the users to complete daily activities more efficiently. It also mentions that a more interactive system could be beneficial, but only for the more able users.
A more recent study from Chang, Hinze, Bowen, Gilbert, and Starkey (2018) outlines the development of an app which supports people with memory problems. Their research revealed that none of the participants used inbuilt calendars or complex reminder apps but instead used more simple and effective ways of reminding themselves, like text messages or colour coded calendars. They designed their application to be simple and easy to understand, because people with cognitive disabilities easily get overwhelmed or distracted. They also noted customizability as an important requirement, just as discreteness. Many people with cognitive impairments don’t like a device putting a spotlight on their disabilities.
2.3 Human Centred Design
With HCD, people and designers work together to create an effective and desirable design. This trend in designing goes back more than 60 years. In 1955, an important work of designer Henry Dreyfuss was published. In Designing for People (1955), the author stated the value approaching with a people-focussed perspective. This work can be seen as the early HCD vision. In the following years this vision expanded, with the help of human factors, ergonomics and other disciplines. This means that HCD developed from the intersection of many fields.
With this project, we have to keep the user in mind, our co-designer. This must follow in a design vision with a human focussed challenge.
Our design vision states: “Design a product or service for users with short-term memory impairments to not only remind them to take action, but also make them follow through on it.” This design vision is created after interviews with our co-designer, that clearly expresses these problems is his daily life.
Design ethics focuses on the moral behaviour and the responsibility regarding choices within designing.
In our project, we are going to responsibly make choices for our design with the help of our co-designer. This will lead to a Human Centered Design vision, because our co-designer will be the center of the project. We will behave morally by communicating, sympathizing and cooperating with our co-designer.
2.4 Theoretical introduction to the ‘impairment’ / special need of your user group
The first paper (Rabinowitz, A. R. & Levin, H. S., 2014) gives a broad overview of all the common (and less common) cognitive impairments that are caused by Traumatic Brain Injury (TBI). Although our participant suffered an Acquired Brain Injury (ABI) rather than TBI, this distinction is mainly in the cause of the injury and not the results. The paper also gives a clear insight into all the terminology for the different impairments, and bases its content on a large list of other papers which go into further detail for each different impairment, making it a great place to find a lot of information quickly. This paper also describes how almost every patient differs in their symptoms and recovery. The symptom our participant describes having the most trouble with appears to be apathy, which is described more in detail in the second paper.
The second paper (Van Reekum, R., Stuss, D. T., & Ostrander, L., 2005) is one of the papers that the first one cites. This paper goes into the causation, outcomes and treatment of apathy, which is in its most basic description a lack of motivation. The paper however notes that “apathy be defined as an absence of responsiveness to stimuli, with the requirement that this lack of responsiveness be demonstrated by a lack of self-initiated action.” (Reekum et al., 2005, 8). This almost perfectly describes the struggle our participant faces, and is a much more apt description rather than simply a lack of motivation. The paper also describes some associated outcomes with apathy, noting that it is not fully clear whether apathy causes them or simply correlates with them. These outcomes range from a general decrease in daily functionality and lowered perceived quality of living, to problems with maintaining treatment and the annoyance to other people in their life due to them seeming willfully ignorant and lazy.
2.5 Co-design / Participatory Design
Co-design is the“collective creativity as it is applied across the span of a design process” (Sanders & Stappers, 2008). The idea of co-design is to involve the end-user and most of the time, also the secondary users in the design process to create a product or service that fits the end user’s needs better (de Bont et al, 2013).
Co-design/participatory design has its origins in the 1960s and 70s In western societies (Simonsen & Robertson, 2013) People wanted more involvement in aspects that influenced their lives. Design researchers realized this interest in involvement and they started thinking about how they could involve people in the design process.
The reason to do co-design is that it provides the designers with richer user insights, they obtain a multi-perspective review, get early validation of user requirements, and acquire expert knowledge (de Bont et al, 2013). Co-design is therefore mainly used at the beginning of the design process, also called the front end. “In the fuzzy front end, it is often not known whether the deliverable of the design process will be a product, a service, an interface, a building, etc.” (Sanders & Stappers, 2008)
Below several papers of co-design with participants with a similar disability as our participant will be discussed.
The first (Brereton et al, 2015) paper discussed a case study of information technology students co-designing an interface for young adults with intellectual disabilities to express their own goals. In this co-design process, it is clear to see that there was a distinct difference made between the functionality from which the most co-design and feedback came from the proxies and the interaction from which most of the co-design and feedback came from the end-users themselves with the use of rapid prototyping. This case is an interesting take on the co-design process since it splits up the process clearly. By having the end-users hardly participate in the ideation process because “the users would not have been able to express the need for it themselves”(Brereton et al, 2015) it vastly ignored the needs and wants of the end-users. For that reason we do not plan on using this method. However, the use of rapid prototyping to improve the interaction that the end-user has with the product is something that we most likely will include in our co-design process.
The second (Ríos et al, 2019) paper discusses the co-design process with elderly with a mild cognitive impairment. The materials used during the co-design were a questionnaire, an interface mockup, and a physical mockup. The co-design method consisted of an interview conducted by a project member, where the participant and the caregiver will go through different questions related to interface design and functions of the proposed solution (Ríos et al, 2019). The use of an interface and physical mockup is something that was also used in the previous paper and we see this as a very viable option for getting good feedback from the users. The conducting of an interview with the participants is also something that we are already doing at this point and will likely continue in the co-design phase.
In the final paper (Rodil et al, 2020) a case study is discussed with someone with an acquired brain injury who has difficulty remembering planned activities. An important point for the researchers was reciprocity, “we made a point out of having casual conversations with P, which were not directly relevant to the research agenda” the actual co-design method that was used was the future workshop which consists of three phases. The first one letting the participants critique their current situation. The second phase has the participants freely brainstorm ideas for solving the previously defined problems. And the realism phase in which the designer finds out what is achievable by working with technical prototypes (Rodil et al, 2020). This seems like a method that would work well with our participant. Since the situation presented in this paper also closely matches our current participant do we think that this is a method that is well worth trying with our participant.
Conclusion/Discussion
In conclusion this paper discussed that some of the main barriers disabled people encounter are negative attitudes, stigmatization and discrimination, while they have quite a lot of potential. One of the factors which uncorks these capabilities and potential is empowerment. What can help are assistive technologies where for people with deficits of self-initiation a device which gets the users attention is better at motivating users to do tasks. When looking into case studies of co-design with participants with a similar disability we found that the use of the future workshop is a very viable option for co-design and that with the use of rapid prototyping we can get reliable value feedback from our participant. An important part in our co-design is that our participant has trouble with short term memory. His main problems appear to be around apathy where he cannot act upon the sensory input given. From the first interviews it became clear that the problem our participant struggled with most is remembering he needed to do something after his initial reminder. This is why our design challenge is to design a product or service for users with short-term memory impairments to not only remind them to take action, but also make them follow through on it.
BIBLIOGRAPHY
Works Cited
2.1
1. Boumans, J. (2012). Naar het hart van empowerment: een onderzoek naar de grondslagen van empowerment van kwetsbare groepen. .
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2. Chang, C., Hinze, A., Bowen, J., Gilbert, L., & Starkey, N. (2018). Mymemory: A mobile memory assistant for people with traumatic brain injury. International Journal of Human Computer Studies, 117, 4-19.
https://doi.org/10.1016/j.ijhcs.2018.02.006
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3. Hästbacka, E., Nygård, M., & Nyqvist, F. (2016). Barriers and facilitators to societal participation of people with disabilities: A scoping review of studies concerning European countries. Alter, 10(3), 201-220.
https://doi.org/10.1016/j.alter.2016.02.002
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2.2
1. LoPresti, E. F., Mihailidis, A., & Kirsch, N. (2004). Assistive technology for cognitive rehabilitation: State of the art. Neuropsychological Rehabilitation, 14(1-2 SPEC. ISS.), 5-39. https://doi.org/10.1080/09602010343000101
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2. Wilson, B. A., Emslie, H., Quirk, K., Evans, J., & Watson, P. (2005). A randomized control trial to evaluate a paging system for people with traumatic brain injury. Brain Injury, 19(11), 891-894. https://doi.org/10.1080/02699050400002363
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2.3
1. Zachry, M., & Spyridakis, J. H. (2016). Human-Centered Design and the Field of Technical Communication. Journal of Technical Writing and Communication, 46(4), 392–401. https://doi.org/10.1177/0047281616653497
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2. Buchanan, R. (2021, 12 februari). Design Ethics | Encyclopedia.com. Accessed from https://www.encyclopedia.com/science
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2.4
1. Rabinowitz, A. R. & Levin, H. S. (2014). Cognitive Sequelae of Traumatic Brain Injury. Psychiatric Clinics of North America, 37(1), 1-11.
https://doi.org/10.1016/j.psc.2013.11.004
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2. Van Reekum, R., Stuss, D. T., & Ostrander, L. (2005). Apathy: Why care? Journal of Neuropsychiatry and Clinical Neurosciences, 17(1), 7-19.
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2.5
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