Without a doubt, involving vulnerable users in design and research creates diverse, unpredictable, and situated challenges that in the past have often resulted in excluding these users. Despite these challenges, it is important to include vulnerable user groups, in order to battle digital exclusion and empower these groups socially and economically. And while designers and researchers who involve these users face both ethical and methodological challenges, what I have come to find is that some of these challenges stem from preexisting stigma or are created by the process itself.
Let me explain. Between 2014 and 2017, I was part of a design research project that involved people diagnosed with schizophrenia in the design of a digital service. Schizophrenia is an illness that can have diverse symptoms, including delusions, flat affect, social withdrawal, and cognitive limitations such as problems with attention and illogical thinking . There is no objective test for schizophrenia, but the criterion-based diagnosis is made based on an exclusion of other illnesses .
The research project focused on supporting the 10 percent of people with the diagnosis who require the most support—individuals who live in group homes and require everyday assistance. The aim of the project was to design digital peer support, a service that would enable the users to engage in mutual social support. The outcome of a schizophrenia diagnosis appears more promising in developing countries than in developed countries . There are indications that this may be connected to the mode of treatment; for example, social support has been found to be beneficial , but the primary treatment in developed countries is antipsychotic medication, which treats only some symptoms .
Since little design research had been published based on work with people diagnosed with schizophrenia and there was a definite risk to the well-being of the users in this sensitive design situation, we chose to begin the process by interviewing stakeholders. We interviewed four parents of adults diagnosed with schizophrenia and three medical professionals who worked daily with people diagnosed with schizophrenia: one activity coordinator, one psychiatric nurse, and an assistant nurse in housing support. The goal of the interviews was to understand the users' life situation and from that identify any challenges that would be relevant for participation in design activities.
Despite a general focus on the lives of individuals diagnosed with schizophrenia, the analysis of the interviews emphasized a great number of challenges to participation in design. In fact, the challenges seemed so great that I questioned whether it would be possible at all to design digital technology with the target user group. First, people diagnosed with schizophrenia were described as having poor social skills due to being inherently socially withdrawn and experiencing an alienating stigmatization. Both negative associations and negative behaviors contribute to disaffection. Since participation in design activities is to a large degree social in nature, poor social skills would hamper the ability of people diagnosed with schizophrenia to participate.
Second, the stakeholders described their adult children and patients as having low cognitive ability, in the sense that they could be unreasonably trusting or distrusting, lacked an understanding of the consequences of their actions, were unable to think creatively, and had difficulties understanding and defending their rights. This was both a consequence of the illness as well as a side effect of their medication. Furthermore, society tends to handle people diagnosed with schizophrenia collectively, making those who have been under care for decades unaccustomed to expressing their individual opinions. Since participation in design requires an understanding of consequences and the creative solving of complex problems, this could affect the ability of people diagnosed with schizophrenia to participate in design.
Finally, the stakeholders described users that unanimously lacked experience with digital technology. This was due to an unwillingness or a lack of cognitive ability to learn as well as a lack of financial resources to purchase and keep digital technology, stemming from a low income combined with frequent expensive addictions such as tobacco or gambling. Some stakeholders also described paranoia toward digital technology as a hindrance to technology use. Two of the parents told me how their adult children had paranoid delusions regarding digital technology and that one refused to even use a debit card. Since our goal was to design a digital service, this would greatly affect the possibilities for the target user group to access it.
Technology use was raised as generational; younger individuals with more digital technology experience before the onset of the illness were described as more likely to use digital technology. Yet the stakeholders described negative consequences; for example, overly trusting people were scammed online, and others posted ramblings during psychoses for everyone around them to see. In short, digital technology use could carry severe consequences.
The challenges seemed so great that I questioned whether it would be possible to design technology with the target user group.
Based on the analysis of the stakeholder interviews, designing a digital service for people diagnosed with schizophrenia seemed fruitless. In all appearances, no one from the target user group would use it, or even be involved in the design process. Further ethical issues were raised, as it seemed that this digital service might actually increase the exclusion of the target user group.
Nevertheless, one of the researchers in the project group was also a psychiatric nurse with over a decade of experience working with people diagnosed with schizophrenia, and she saw the great potential that this type of support had to improve the target user group's situation. Given how often this group is excluded from this type of research, the value of including them was high. Therefore, we made the decision to go ahead with the design process, with particular care.
We devised a series of three workshops that were adapted to our understanding of the target user group's challenges. Each round of workshops involved only two users to reduce both cognitive and social stress, and two rounds were performed. None of the participants had any connection to the interviewed stakeholders, but all had a long history of the illness and required daily support. One participant quit after the first workshop, due to depression.
The workshop activities were simple, analog, and primarily conversation based. Much of the conceptual design was done between the workshops and presented and discussed with the participants. Design activities used cut-out materials and did not expect the participants to create from scratch. As facilitators, we maintained a calm and accepting atmosphere, showing patience and understanding.
Our findings from the workshops were in many ways directly contradictory to the image from the stakeholder interviews. First, while the social setting clearly made the participants somewhat hesitant, none lacked social skills to the degree that they were unable to participate. The small-group setting appeared to suit the participants. We had planned to work in pairs of one participant and one researcher during the first round of workshops, but the participants themselves chose to work as a group.
Second, the participants were able to give creative and relevant input to the design process. One participant was more challenging to work with than the others, as she had obsessions that made her unable to give realistic suggestions. She would try to provoke a reaction by claiming to have murdered a public figure with whom she was obsessed, and refer to this in unrelated discussions regarding design functionality. It therefore proved necessary to have medical expertise within the research group. The nursing researcher used her experience to regain the realism necessary for the design activities.
Finally, all participants owned a smartphone, using it to varying degrees. Two also owned older desktop computers. While they described digital technology as expensive, they also considered it necessary. One of the participants told us how his life would fall apart without his phone, while another was more hesitant and owned one because society required it.
Abandoning design or research with vulnerable users can create further exclusion of already excluded societal groups.
The lack of experience in using digital technology showed during the design activities. The participants lacked the knowledge to make realistic suggestions for the design of the digital service. I have done similar design work with eight- to 12-year-old cancer survivors, and though I experienced many other challenges, the children had a high level of knowhow on digital technology and its design. In this case, the adult participants did not have that experience but were still able to express their needs and wants. However, the workshop concepts had to be adjusted before implementation in order to make them feasible.
Almost a year after the last workshop, we developed and evaluated a prototype of the digital peer-support service. This prototype was evaluated with two of the previous workshop participants; both agreed it was something they would use.
In summary, the design process can be considered successful in the sense that we were able to involve people diagnosed with schizophrenia in design activities. Yet we found a significant gap between the expectations of relevant stakeholders and the reality of the design process. This gap is understandable, since the illness has such a profound effect on not only the lives of those affected but also the people around them. The lives of the parents of the adult children had been completely changed, with decades of worry and fear of what the future held for their children once they could no longer help them. In this situation it is reasonable to focus on challenges and complications. Likewise, the interviewed medical professionals have in their professional role a focus on the illness, making it again reasonable that this is what they emphasized.
Nevertheless, it is customary to involve relevant stakeholders in design, probably more so when the target user group is vulnerable and involvement comes with high risk. This indicates a great likelihood of misinterpreting already vulnerable users. Had our decision on whether to perform the design process been based on the stakeholder interviews, it probably would not have been performed.
This is an ethical question, for there are risks involved in user participation in sensitive design situations such as this. There is a higher risk of participants being harmed; expectations on the design process can be unrealistic due to higher stakes for the outcome; it is more difficult for the researcher to interpret the empirical material; and challenges are more difficult to predict . One should not enter into this type of design process unprepared. I would consider it reasonable to abandon the work when facing such practical and ethical challenges as arose from the stakeholder interviews. Nevertheless, a critical examination of the stakeholder interviews shows a predisposition to focus on challenges, and abandoning design or research with vulnerable users can create further exclusion of already excluded societal groups.
Moreover, as I conducted and published this research, I noted that the wording used when writing about vulnerable participants also can contribute to stigmatization, particularly when there is strong preexisting stigma. Schizophrenia is an illness with variating individual symptoms, and many people live full lives despite the diagnosis. The 10 percent of the people diagnosed with schizophrenia on whom we focused also have very different illnesses. Society tends to treat people diagnosed with schizophrenia collectively, and so do we when we write about them in research publications. This is inevitably due to the way the publication system works; in order to motivate the relevance of our research, we have to emphasize the challenges. Thus, we benefit from highlighting the difficulties of involving vulnerable participants in design, which in turn emphasizes these difficulties even more; this is not unlike the perspective of the stakeholders in this case.
Specifically, in regard to schizophrenia and other diagnoses given when nothing else explains the symptoms, I have found it important not to equate users with the diagnosis. As has happened many times before, diagnostic criteria can change over time. It is possible to make an important distinction by writing, for example, people diagnosed with schizophrenia instead of people with schizophrenia or even schizophrenics. A person with a diagnosis is not equal to that diagnosis. How we write about users should reflect their individuality and not the illness that they are connected with, which becomes an important ethical question in sensitive research.
There is no simple way to involve vulnerable users in design or research, but we can facilitate that participation and avoid contributing to further stigmatization. As designers and researchers, we can be advocates for the users, highlighting strengths as well as weaknesses. By adapting the design process to suit the users' abilities and including people with medical expertise, vulnerable users can be involved on their own terms. Care should always be taken to reduce risk of harm, but equal care should be taken to actively involve users in decisions. The responsibility of the designer is greater when the users are vulnerable, both during and after the design process.
Susanne Lindberg is an associate senior lecturer in the School of Information Technology at Halmstad University, Sweden. Her work has focused on user involvement in sensitive design situations, with a particular focus on the ethical challenges that arise when users are vulnerable. firstname.lastname@example.org
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