Context and Experience During Previous Research
There are currently over 1.1 million Syrian refugees in need of healthcare services from an already overstretched Lebanese healthcare system. The high penetration of smartphones and high levels of Whatsapp usage among Syrian refugees in rural Lebanon provides the HCI community with a timely opportunity to design digital platforms to improve the welfare of this community. We conducted focus groups with 59 refugees in rural Lebanon to identify contextual and cultural factors that can inform the design of digital technologies to support refugee Antenatal care. The study was exploratory in nature. Focus groups were conducted at the Informal tented settlements (ITSs), usually in the largest tent in the settlement. On average there were 15 women per session that were seated on the ground around the tent. Children were also sitting around the tent as their mothers, who were participating, had no one to leave them with.
Based on the above mentioned experience working with this population, this blog post will critically explore how to configure participatory design with refugees and how to conduct experience based design processes. For each methodology, theories and examples will be presented and contrasted with the context in which my previous research with refugees was conducted.
Participatory design has opened up a new playing field within HCI research. The methodology is being used to elicit the experiences and knowledge of the population you are working with/for in design processes. While some researchers incorporate this gained knowledge into the design of solutions, others view the process to be a finding in itself .
Björgvinsson et al  highlight the success of HCI designs is nowadays reliant on designing ‘in the wild’. Accordingly, they call for the pushing of boundaries of participatory design to include the democratization of innovation. They attribute this to the rise of technologies such as crowdsourcing as they have the potential to open the floodgates to participatory research. This framework for innovation seems to be on the rise as labs in several fields are being set up as permeable entities that welcome influences from the social context in which they are set up. This creates a space where controversy within the community can be directed towards constructive designs. This aligns with the agonistic pluralism concept of democracy that DiSalvo  has indicated to be lacking in HCI designs. DiSalvo argues for a shift towards design exploring the realm of agonistic pluralism rather than that aiming at consensus. The potential for designs to allow for the surfacing of controversial matters within communities, that would otherwise remain salient, gives added power to the concept of participatory design. In line with these views of participatory design is Thinging, which involves creating social innovations and a space for controversies to constructively lead to designs . Thinging requires Infrastructuring to be fluid enough to respond to the iterative process that participants partake in. An advantage of infrastructuring is that projects have a faster pace and are perceived to be more understandable to the stakeholders .
Opening up this space to multiple stakeholders entails a difficult interaction that we as researchers sometimes find ourselves managing, facilitating and/or participating in. Therefore, the configuration of the participatory set up and process should be considered. Vines et al  put forth three questions researchers must consider when configuring participation and they revolve around issues of beneficence, forms and roles taken on during participation and control. When reflecting on beneficence it is important to note that it is usually the researchers that initiate the engagement with participants. Who initiates the engagement often times dictates who participates and consequently, influences the the outputs and the flow of the engagement itself. Additionally, it confines the benefits to those chosen to participate and they are not necessarily the ones that would benefit the most.
The roles of participants during engagements vary. Here I would like to link the concept of “roles in participation” and that of “who initiates the engagement”. It is important to identify that often times researchers initiate an engagement with expectations from participants. The expectations shape the role that participants take or in some cases attempt to take. When looking at control within the configuration of participation, Del Guadio et al  illustrate how the configuration of participatory research in conflict areas is influenced by political sensitivities and local powers that may be out of the control of the researcher. The study which is set in the slum area of Rio de Jeneiro, reflects on the influence of collaborating with an NGO. The NGO’s agenda and representative dominated the participatory process. The paper highlights that within the design process some participants have privileges regarding knowledge, decision making and agency and these privileges influence the interaction taking place among participants.
Participation with Refugees
Now that I have discussed some of the theory behind participatory design and its configuration I will draw parallels between the literature and my experience working with Syrian refugees.
The UNHCR’s Innovation initiative calls for stakeholders and refugees to respond to challenges via a web portal and this is a manifestation of Björgvinsson et al’s  statement that technologies are enhancing participation of citizens and communities. However, despite the high usage mobile phones among the Syrian refugee population the web portal and the process of participating is not very accessible. Therefore, I found value in participatory design in the realm of suppression of voices. It is because Syrain refugees in Lebanon are a marginalized population that are not able to openly express themselves that I find opportunity to use participatory design to give voice to their health concerns and to involve them in the design of solutions.
The idea of thinging and infrastructuring also struck a cord with me as working with refugees is very versatile in nature. The multiple stakeholders (NGOs, primary healthcare centers, host communities, refugee communities, and government agencies) involved calls for the project being open to change. For example, during the beginning of the study we started collaborating with an NGO that we had previously worked with. We entered this collaboration in order to have a social worker that is familiar with the community accompany us (as part of the building rapport process). However, upon contacting the Lebanese Ministry of Public Health (MoPH) to gain security clearance to visit the ITSs, the MoPH informed us that in order to access the camp we should collaborate with another NGO. The MOPH has contracted this NGO to be the only NGO accessing the ITSs. We had to apologize from our previous collaborators and entered a new collaboration. This would not have been possible if not for the research team being open to changes suggested by stakeholders. This change led to an improvement in the speed and responsiveness of the study. Additionally, it enhanced the relationship of the research team with the MoPH, whom are now collaborating with us on a follow up project.
The configuration of participatory design began before I was even aware of the dynamic within the engagement. From the moment we entered the ITSs with the NGO representative there was a shift in power and control away from participants. The social worker’s connection with the community aided in building rapport with the participants, but his presence elicited certain expectations by potential participants. This is because he typically provides services and/or benefits to members of the community. As the social worker was the gatekeeper to services he held a position of power that effected who chose to participate in the study. Therefore, despite our efforts to clearly state, as part of our informed consent process, that participants will not receive any type of remuneration, this was still expected by some of the participants. Midway through the focus groups, participants would ask ‘What are we getting out of this?’. Three of the participants, who had voiced this concern, left the focus groups before its completion. Given that his was an exploratory study, and no solution was designed we did not involve the social worker within the discussions. However, for our future work we are aware that increasing the involvement of the NGO as a stakeholder would entail further consideration of how to configure the participation.
Furthermore, while we as researchers viewed that participation in the study to be a fruitful activity that would benefit participants, the participants had a different view. A report by the International Labor Organization stated that the majority of Syrian refugees in Lebanon are living in hard socioeconomic conditions  with 70% of households living below the poverty line of US$3.84 per person per day . Therefore, in our ethics evaluation we considered whether any type of remuneration for participants’ time would be considered coercive and place undue influence. This is because even a minimal payment or remuneration would be of very high value to the population; therefore, women may feel obliged to participate in order to not lose the opportunity of gaining resources, as small as they would be. Consequently, we held discussions with the local ethics board. We came to the conclusion that any type of remuneration would have been considered to be coercive. However, several times during the focus group the participants would ask “What are we getting out of this?”. Participants found it difficult to see the benefit in working on something that does not reap immediate benefits, such as contributing to the design of a future solution related to their health. So the question is not always who is benefiting? It should be accompanied by the questions of (1) How are they benefiting? And (2) do they perceive it as a benefit?
Lastly, the experience also made visible the clash between expected roles and actual roles taken on by participants. Part of the activities of our project was to start brainstorming with participants on potential digital solutions that would address the concerns they expressed in earlier sessions. However, when we asked the women to generate ideas related to technology and health we sensed some hesitance across the board. They would respond to ideas we suggest, and build on them but they would not generate ideas themselves. One woman said “We had never considered these ideas from before so do not expect us to come up with stuff”. This incident clearly illustrates that roles should be tailored to the participants and what they perceive to be part of their role. Additionally, if we want them to explore new roles this should be done through a build up of activities rather than what we attempted to do which put participants on the spot.
Experience Centered Design: The Use of Prototypes
Presenting probes in “the wild” surfaces the different possible interactions that may take place . Explorative prototyping elicits the reactions of participants to new concepts and ideas . This is where experience centered design and participatory design intersects. Probes and artifacts not only allow participants to envision the design being discussed but also allows discussions bridging between senses, language, emotion, culture, utility, artifact and participant . Artifacts have the potential of bringing forth unexpected ideas and interactions not initially intended by the researchers presenting them. With an empathetic approach we aim to use artifacts to understand how the participants understand, feel and interact with the technologies being presented to them. Wright et al  focus on the interplay between the emotions and senses triggered by the use of artifacts. They present the process of purchasing a mobile phone to be an interplay of the aesthetics of the phone and what the purchaser feels they need. They also discuss how no two experiences between participants are the same, and this is something we need to consider when presenting our artifacts to participants. The presentation of probes as apart of participatory design allows for a discussion on the composition of the artifact, its separate features and also the overall role it takes on if used as a tool. Negative anticipation highly influences the interaction with the artifact, and influences how they re-appropriate it. Therefore, how the artifact is presented to participants should be reflected upon before the session. We should not view the initial interaction between participants and artifact as the first experience with the concept but as a continuity of previous experiences that are expressed via that interaction.
Participatory design and experience based design can be integrated by allowing participants to construct prototypes . The joint construction of prototypes by participants of different backgrounds can be used as a probing method. The continuous integration of prototypes in participatory sessions and building on them can be seen as a process of infrastructuring . This allows us to further probe in to participant’s experiences and allows them to generate and visualize ideas. It also allows participants to connect with one another thus smoothing the way for future collaborations.
However, Sanders et al highlight the importance of context in which these activities take place. Context includes group size, medium of communication (face to face vs online), group composition, location the engagement is taking place and the relationships between participants. As you can see the context that Sanders et al indicate we should be considerate of corresponds with the configuration of participation by Vines et al. Therefore, we can assume that the configuration of the engagement also has an influence on how participants interact and/or construct prototypes.
In my research with Syrian refugees we attempted to use probes to explore different concepts of how they can use technology to improve their access to antenatal care.
Two ideation artifacts, or probes, were designed to actively engage the women participants in discussions and to support their imagination of ideas as to how technology might be used to provide ANC services. Mindful of the low literacy levels of this refugee population, the artifacts were pictorial in character with minimal writing. The first probe was a set of trump cards (Figure 1) used to identify how they would prefer to: (1) be contacted by healthcare providers; (2) contact healthcare providers; and (3) access health information. Options included booklets, phone calls, text messages, peers, and social workers.
The second probe was a booklet (Figure 2) containing images intended to convey health information regarding pregnancy. Alongside the booklet we provided a digital voice recorder which we encouraged participants to use to enact recording their symptoms, pregnancy experiences, patient information, and instructions that patients could follow. Our aim in using such an artifact was two-fold. Firstly, to explore communication problems refugees face with healthcare providers; and secondly, to initiate discussion on the use of technology within a peer network or support group.
The probes and prototype were introduced as the second part of the focus groups. They were based on ideas we as researchers wanted to explore. The concepts included communications with healthcare providers and what we did not anticipate was the negative experiences with healthcare providers led to negative re-appropriation. The participants found the concepts to be weak because they relied on healthcare providers that they did not trust.
Furthermore, the utilization of the probes was not effective for several reasons related to the context in which they were presented in. The fluid, and sometimes chaotic, context in which the sessions were taking place meant we sometimes experienced significant difficulties in orchestrating what were intended to be structured engagements. Sessions were difficult to conduct, as women continued to join the sessions as they progressed. This resulted in larger groups than anticipated and made it difficult to fully engage a number of the participants. Additionally, women would leave unannounced to check on the food they are cooking in their tents. Indeed, the large group sizes that resulted may have contributed to the lack of interest in the ideation artifacts, and the women faced difficulties in attending to and envisioning the scenarios presented through the artifacts. The women tended to put the probes to one side, outside of the reach of their children who had to accompany them because no alternative care provider was available.
In conclusion, the theories presented provide rich processes and understanding of participatory design and the use of probes in experience based design. Both methodologies give us insights on the communities we are working with. However, more importantly they make us reflect on our role as researchers within the engagement. By reflecting on my experiences in attempting to partially use the methodologies I realize that the way they are constructed in a superficial manner but require deep consideration. The aims of our studies and that of our stakeholders should be contemplated as well as what they perceive to be beneficial. Furthermore, the roles of stakeholders within the engagements should be agreed upon and eased in to rather than pushed on to participants. What participants perceive to be a benefit is also important to identify early on. Lastly, the context in which probes are introduced is as important to consider as the probes themselves. Size of group and the setting influences how participants react with probes; therefore, these engagements should be well planned in advance and open to be changed according to the context.
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- UNHCR. 2015. UNHCR – Greater support in countries of first asylum needed to stem refugee outflows. Retrieved December 15, 2015 from http://www.unhcr.org/55ddd2c86.html
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