Abstract
This case study report covers our experiences in using Cultural Probes during the first phase of our European and interdisciplinary research project TOPIC (The Online Platform for Informal Caregivers). In that stage of our research, we focused on two major issues: first, describing and analyzing the characteristics of the care and coordination work of elderly informal caregivers, and second, on first implications for design for the field of informal care. Although our general methodological approach was qualitative (ethnographic) with participant observation and interviewing, we included Cultural Probes as an additional method to ethnography for gaining insight information about the care practices by the means of self-observation of and reflection by the informal caregivers. The paper describes our adaptation of the Cultural Probes approach, the similarities and differences to Gaver et al. [1999. Interactions. 6(1): 21–29], the items of our TOPIC Cultural Probes Kit in detail, and re-constructs the design process of one of the items (the actimoClock). Based on the experiences of our participants with the probes kit and our analyses of that use, we also present lessons learned, pros and cons for including that method in the sensitive setting of informal caregiving.
1 Introduction
The background of this paper is the European and interdisciplinary research project TOPIC (“The Online Platform for Informal Caregivers”).[1] TOPIC was funded by the AAL Joint Program that aimed to advance the understanding of elderly informal carers’ needs and design ICT solutions to support their daily lives [5], [20], [42], [48]. It addressed the lack of an integrated social support platform and the lack of accessible ICT applications for elderly people involved within informal care. The project congregated nine partners located in Austria, Germany and France. It was undertaken with information scientists, sociologists and media scientists together with partners from professional care institutions and engineering companies from 2013–2016. The overall aim of the project was to understand the care practices of elderly informal caregivers and how they relate to opportunities for support by designing a web-based care platform that could integrate various services, including information provision, social networking and coordination tools (e. g., a digital calendar).
To develop sustainable socio-technical solutions that can be integrated easily in the existing daily life of informal caregivers and bring relief in their recurring, we need to gain a better understanding of the users’ needs, their context and the circumstances under which they try to provide their work. Accordingly, we investigated the following research questions: What are the major characteristics of the routine care and the coordination work of elderly informal caregivers?
To address these questions, we applied a participatory design approach just from the beginning of the project: After identifying our end users, we realized a requirement elicitation in the three participating countries in order to understand our users, their daily life, expectations and constraints around caregiving. Within this phase of requirement elicitation, we used qualitative methods like interviews (in-depth and informal), participatory observations and Cultural Probes. Based on the results of the phase of requirement elicitation, we designed a platform to support social, informational and tangible needs of our users which we improved iteratively several times based on the feedback of our users. Finally, we studied the use of the TOPIC CarePortfolio that we deployed in the last project year at the homes of our users – in the scope of a longitudinal field study.
In this paper, we will focus mainly on the one-year phase of requirement elicitation of the project and especially on the utilization of Cultural Probes in the context of informal care with answering the following research question: What implications for design can we make from learning more about care practice especially by applying Cultural Probes? Cultural Probes are very valuable tools to capture the users’ context, their constraints and requirements before designing a system for them that would support their life. We will show how Cultural Probes can be designed, introduced, complemented by other methods, and finally analyzed to create a corpus of knowledge that help designers to create systems that consider all these factors in supporting users in their real context.
Next, we will show the related research (Section 2) and present our case (Section 3). Then we will describe our Cultural Probes in detail (Section 4), relate and reflect on the use of Cultural Probes in our specific context (informal caregiving) and present the results of our study in terms of lessons learned (Section 5) before we conclude our paper (Section 6).
2 Related Research
In this section we want introduce to the lifeworld of informal caregivers with presenting some empirical data about personal characteristics and circumstances of their daily life (Section 2.1). Then, we want to give an short overview about the literature regarding Cultural Probes as another method for gaining information from the participants as the options for ethnographic observation also had their limitations (Section 2.2).
2.1 Lifeworld of Informal Caregivers
With more than 80 %, informal caregivers do the majority of care work in the European Union as well as in other parts of the world [49], [28]. In line with the demographic developments in most parts of the world, this number is still increasing. Therefore, one could label that group of informal caregivers as the biggest caring service and an important human and financial resource for the EU countries. Without this unpaid performance, the care for many chronically sick citizens could not be ensured.
Unfortunately there is no general and accepted definition available that describes the term “informal caregiver” [35]: So we created our own definition within the TOPIC project based on common characteristics of several descriptions found in the literature [6], [14], [21], [22], [24], [25], [29], [31], [32], [34], [36], [41], [44]: An informal caregiver provides support in physical, emotional, household and/or financial activities to a person who is chronically ill or limited in his or her ability to cope with the everyday life in the longer-term due to health issues. Furthermore, an informal caregiver is unpaid and, in most cases, “untrained” for the care work and provides help on a regular basis – mostly 24/7.
The daily life of an informal caregiver can be described as interplay between routine work, spontaneous interruptions and lack of time [40]. Moreover, dependency in regard to activities, decisions, emotions and/or finances can often be found in the relationship with the care receiver [46]. All these issues often have rather negative impacts on their social life: Meeting friends, spending time with others spontaneously or taking up a hobby is very difficult to be done on a regular basis. Unsurprisingly, most of the informal caregivers suffer from physical load and emotional stress due to the care work [37], [51], [42]. When compared to their non-care giving counterparts, informal caregivers have to face a higher risk for both physical and psychical morbidity and an increasing risk of mortality [9], [11], [43]. The level of burden can even increase when informal caregivers are still having a paid job or/and children to take care of, because the time left after working hours is almost filled with care work [1]. The empirical examples of our caregivers illustrated their enormous work and their practice to cross the limits of their own capacities long-term. So, informal caregivers can be really called our society’s “hidden patients” [15].
2.2 Cultural Probes
Cultural Probes were first introduced and reflected in a paper by the team of designers around Bill Gaver et al. [17]. The authors define ‘Cultural Probes,’ (as) a design-led approach to understanding users that stressed empathy and engagement [17]. Probes are collections of evocative tasks meant to elicit inspirational responses from people – not comprehensive information about them, but fragmentary clues about their lives and thoughts. We, as researchers, suggested the approach was valuable in inspiring design ideas for technologies that could enrich people’s lives in new and pleasurable ways. ([16]: 53). The background of the first paper of Gaver et al. [17] has quite some resemblances to our project TOPIC: It was also a European project at three sites (Italy, Norway and the Netherlands), had ten, also elderly, participants in each country and focused on the enhancement of the interaction and presence of elderly people in their local communities ([17]: 22). Their probe kit contained several maps of the local places (neighborhood, but also the whole city), a disposable camera, a photo album for the pictures, a media diary, and 8–10 postcards addressed to the researchers with very direct request and questions about certain preferences of the participant (for instance, the favorite technical device, the importance of art in everyday life, etc.). Similar to Gaver et al., we paid attention to the aesthetics of the materials (for details see below). Although Gaver et al. aimed at “understanding local cultures” ([17]: 22) like we aimed at understanding the “care culture/practice” of our participants, their effort was clearly design-oriented, to gain “unexpected ideas”, “to elicit inspirational responses” (see [16]: 53) for the design and they perceived themselves as “artist-designers” (design as research) and “concentrate(d) (...) on the cultural implications of our designs” ([17]: 24).
In difference to that, the research presented here is part of a qualitative ethnographic study (e. g., [5], [42]) and applied Cultural Probes in the field when there were limitations for the ethnography due to the nature of informal caregiving at home. Gaver et al. didn’t conduct a qualitative study with long-term engagement in the field, but just visited the sites once and were more interested in the inspiration derived from the returned artefacts. To our knowledge, they did not state expressively the use of the adjective cultural explicitly, but used it in reference to the “cultural environment of the people”, the “cultural implications” of their design, etc. [16]. This is rather a vague and an open definition – as “culture” is as a scientific concept or term in a broader sense (which might be the intention as it can cover a huge variety of social aspects such as language to social life, family, art, religion, etc.). On one side, we did not want to narrow that understanding, but take up on it and understand “cultural” here in relation to the individual and family life and routines (including the abilities to read and write, have a sense of “time”, to share memories, take pictures and talk about them), the care practices, etc. On the other side – and by taking up on the quotation at the beginning of this paper – we were not collecting “fragmentary clues about their lives and thoughts” (as Gaver et al. intended) but aimed at collecting “comprehensive information about them” ([16]: 53) – with the Probes. The Cultural Probes were one tool and method amongst our repertoire of qualitative methods.
Then, one could ask: Why referring to Gaver et al. at all? Our answer is: Because we liked their approach of “empathy and engagement” (see last quotation) in creating new tools in the work with elderly participants, specifically “these packages of maps, postcards, and other materials” ([17]: 22) that we also intended to use as part of our qualitative ethnographic study (see [10]) and that will be described here at length in the Section 4.
In the years to follow, the Cultural Probes approach was widely used in the different HCI and CSCW research communities [12], [16], [50], [19], [3] and also other forms of probes were developed such as technology probes [23], mobile probes, empathy probes (for an overview and references see Graham et al. [19]: 30). In some cases, the Cultural Probes were used in the sensitive settings of caregiving such as Crabtree et al. [12] and in the research with elderly participants [26], [27], [33].
In our case study, the TOPIC Cultural Probes Kit included a variety of different methodological instruments to support self-description and self-observation of the participants, their everyday life, care routines, and associated perceptions and feelings. In our case, the Cultural Probes were perceived as additional data material as just one part of a multi-method, long-term qualitative research project, carried out by information and social scientists. So, we maintained our reflective, interpretative methodology and didn’t aim at “objective methods” as Boehner et al. [2] discuss for some research groups that used probes. But the widely use of the Cultural Probes, especially in the way Gaver et al. realized it, provoked critical encounters as by Dourish [13] and Boehner et al. [2]. Dourish especially criticized the one-sided focus on design and warned that such Probes should not be a “pure substitute for ethnography” as some research teams make use of Probes in order to avoid the time consuming and challenging task of qualitative research.
3 The Research Process
After acquisition of users (see Section 3.1), we started the requirement elicitation of the TOPIC project with a first contact interview at the homes of our informal caregivers: We talked with them about the (care) situation, the person they are caring for and about themselves. Furthermore, we gave them a short overview about the project and what to expect regarding their involvement. At the end of this first contact we arranged 3 to 4 additional appointments with them to do the participatory observations: During these visits, we observed their daily life and routines at home – approximately for half a day on each visit. Additionally we conducted informal interviews with our users at the beginning and at the end of each appointment: Through these informal interviews we were able to engage in deep conversation with them about their current situation, the status of the care receiver but also about some news that happened since the last visit. We tried to involve the care receiver in these talks, if possible. Because of the limitations for participatory observations due to the very intimate setting in the home care situations – we did not want to be intrusive – we decided to use Cultural Probes. So, at the beginning of the participatory observation phase we brought the TOPIC Cultural Probes Kit with us and distributed it to the user: After a short introduction about its content we explained our participants that they were entirely free to use any or none of the probes we gave them. The probes stayed with the participants for two weeks up to one month. Originally, the probes were supposed to be used every day during that period of time. Paying attention to the specific setting as well as the timely and emotional constraints of the participants, we realized a rather flexible practice in our part of the study. The participants were free to use whatever part of the Cultural Probes they preferred and whenever they found time for that.
After finishing all appointments of the participatory observation phase, we visited them once again to conduct an in-depth interview: We wanted to clarify things we didn’t understand so far or we observed while we were visiting them. Furthermore, we collected the TOPIC Cultural Probes Kit at the appointment of the in-depth interview and asked them about their experiences with it. We read the filled items together with the informal caregivers and asked detailed questions or used the content as a hook for the on-going conversation.
At the end of the phase of requirement elicitation – after finishing the data collection – we analyzed the transcripts of the interviews and observations together with the underlying probe material with the open and later axil coding method of the Grounded Theory [18]. This is in line with our reflective and interpretative (qualitative) methodology in general.
The results of analysis were discussed amongst the researchers, designers, and engineers of the project team and helped to define relevant use case scenarios[2] based on the ethnographic material gathered in the phase of requirement elicitation: They described typical activities of the users that are meant to be supported by the technology such as searching for information in the learning module, sending a message in the communication module, or looking for recommendations from other caregivers. Multiple use cases were broken down from the corresponding scenarios and became the basis for the development of the prototypes. Moreover, we created three personas (Anna, Otto, one non-persona) based on typical respectively non-typical characteristics of an informal caregiver such as age, living conditions, care situation, etc.
3.1 Description of the User Sample
We recruited twenty informal caregivers for Austria and Germany – ten in each country – for the phase of requirement elicitation. To get to know and in touch with our future participants we used different gatekeepers: Home care services (one in each country was participating in the TOPIC project), newspaper articles, interest groups, shops selling products for home care, etc. The sample in Austria consisted of one male and nine female informal caregivers [20]. The age ranged from 55 years to the oldest participant with 80 years. The average age was about 64 years. Most of the informal caregivers in the Austrian sample were already retired: Just one participant was unemployed and two were still working. Five participants in Austria were caring for their spouse, three of them for their parent, and two for their child. All of them were caring for their ailing relative for more than two years at the time of the requirement elicitation. Eight informal caregivers were living in the same household as the care receiver. All of the informal caregivers in the Austrian sample described themselves as fully mobile. Most of the care receivers were suffering from Alzheimer’s disease, Parkinson’s disease, walking impediment, hearing impairment, etc. In Germany, the ten participant caregivers of the phase of requirement elicitation were aged between 60 and 85 years (most of them in their late 60s), retired or gave up their job because of the care situation [42]. Seven of them are female and had grown-up children. The educational background and former occupation was quite diverse (former teachers, craftsman, housewife, etc.). Similar to the Austrian group, most of the German participants care for their spouses, two others for a parent, and one for her chronically ill, grown up child. All of them have been informal caregivers for many years: Seven persons for a period between two and four years, the other three of them have dealt with care provision for ten years now. Like the other participants in Austria, the patients were respectively suffering from a chronic and progressive illness such as dementia and Alzheimer’s disease, additional medical conditions such as strokes, depression or heart failure or Parkinson’s disease.
4 Cultural Probes in the Context of Informal Care
Within the requirement elicitation of the TOPIC project, we offered our target group of informal caregivers a box with several Cultural Probes and asked them to use the included items. Although our users have several circumstances in common (e. g., less time, care for somebody, stress), due to the fact of being informal caregivers, they are also individual characters with various backgrounds, interests, and preferences. When selecting Cultural Probes for the TOPIC requirement elicitation, we were not only trying to keep in mind the care situation that our users had to face daily, but we were thinking of them as individuals and offered several Cultural Probes, so that every user can find at least one item in the kit that he or she can become familiar with.
Next, we will describe the five items in our TOPIC Cultural Probes Kit in detail (Section 4.1) and how and why we designed the actimoClock (Section 4.2).
Items of the TOPIC Cultural Probes Kit used in Austria.
4.1 Items of the TOPIC Cultural Probes Kit
Starting with our phase of requirement elicitation, we, as researchers, had several questions about the daily life of informal caregivers in mind: What are their days like? In which tasks do they engage? What places do they visit? Which problems do they have to deal with? Which thoughts, problems, and feelings do they have? With whom do they have contact? With various Cultural Probes we wanted to get these questions answered by our informal caregivers.
An ordinary ruled notepad in the size of A5 with the project logo on its cover acted as a diary (Figure 1). We tried to avoid having a template for each day because we didn’t want to restrict our users. They should feel free to write what and however they wanted to. With the diary we hoped to get an insight in their daily routines, tasks, problems, positive events but also about their thoughts, fears, and hopes.
Furthermore, we wanted to learn about situations occurring during a day that are important, special, nice, burdensome, etc. So, we offered them a polaroid camera (Figure 1) to capture these moments. We have consciously decided to provide an instance picture camera so that the users could immediately see the photo they took and had the possibility to add these pictures to the diary or other items of the TOPIC Cultural Probes Kit.
TOPIC Cultural Probes Kit from the German group of researchers called “Treasure box of experience”.
To capture the daily activities, their duration and type but also the mood of our users while carrying out these activities, we designed and developed the actimoClock (Figure 1) (see Section 4.2): The actimoClock is a 24-hours-clock that was offered as a playful part of the TOPIC Cultural Probes Kit together with colored pencils. We included a color legend so that our users could describe what colors they used for which activity. With several emoticon stickers that we included into the kit (Figure 1) the users could mark their moods attached to the activities they reported. Moreover, we offered blank stickers in the box to give our users the opportunity to create their own emoticons to represent any other feelings that we were not aware of so far.
Due to the fact that the social surrounding of informal caregivers shrinks through the time, we wanted to know how many contacts our users had and how active these contacts were. That is why we decided to include a social map (Figure 1) to the TOPIC Cultural Probes Kit: With it, our informal caregivers could visualize with whom and how frequently they had contact. Moreover, it was possible to note on this map the relation of these persons, like family member, a friend or the doctor, to the informal caregiver.
Finally, we were interested in their thoughts and feelings – especially regarding the care situation. That is why we decided to create 14 picture cards showing various situations in the care context. We hoped that our informal caregivers would write down what was coming up to their mind when looking at them.
We prepared the probes carefully and with attention to our group of participants: Elderly informal caregivers who are under stress due to the care situation [12], [42], who don’t have much time for themselves, energy, and so on. Similar to Gaver et al. ([17]: 25), we paid attention to the aesthetics of the materials. For instance, our German group of researchers decided to not use a normal box for the Cultural Probes, but a bright colored one and covered it with pictures of them and contact information in the case that the participants would have questions and called it “Treasure box of experience” (Figure 2). This name is a reference to our methodological position that we were interested in the experiences of our informal caregivers and perceived those as a valuable contribution to the research. By this, we wanted to underline our appreciation for the hard informal care work that is often overlooked or doesn’t gain enough attention.
4.2 Designing a Cultural Probe Item: The actimoClock
The actimoClock was an item of our TOPIC Cultural Probes Kit that was specially designed for capturing information from daily routines of our target group of informal caregivers. The initial idea that resulted finally in the development of the actimoClock was the interest about the interplay between activity,time, and mood of (our) informal caregivers. During the whole design process, we kept their living conditions, restrictions, and possibilities in mind: We needed an artefact that could be filled in once a day (e. g., at the end of the day) or in several steps during the day allowing interruptions in between. The interruptions should not have any negative impact on the outcome and not cause any additional workload. Of course, we knew that our caregivers had to prioritize their care responsibility higher than filling in the TOPIC Cultural Probes Kit.
Parameter “Time”: We based our idea on the structure of a classical analogue clock because that is something that everyone is familiar with. For representing the whole day with its 24 hours we decided to have 24 units on our clock – instead of just 12 hours. Although slicing the circle into 24 pieces provided a very narrow space per hour to add data on the clock, we wanted to stick to the idea to keep the clock understandable for our users.
Parameter “Activity”: We wanted the user to color the 24 pieces to visualize the related activity individually. We decided that it is not useful to offer our users predefined activities and corresponding colors, because every care situation is different and it would be more interesting to see which activities our informal caregivers would define.
Parameter “Mood”: We added a second circle to the actimoClock to offer space for emoticons so that feelings can be related to the activity put onto the slices. Furthermore, we created several emoticons stickers with a corresponding legend – always keeping our target group in mind to create feelings that can fit to their life situations. We added a fair amount of them in the TOPIC Cultural Probes Kit.
Diary entry of one of the Austrian users.
5 Findings
The biggest benefit we had by using Cultural Probes was that they enriched the data we gathered during the phase of requirement elicitation. Besides Cultural Probes, we applied a mixture of methods for data collection such as in-depth interviews, participatory observations, and informal interviews. Contexts are complex constructs, especially in case of informal caregiving. They involve different stakeholders, time restrictions, instable circumstances related to the health condition of the care receiver, dependencies initiated by care procedures and so on. Interpreting the data captured in Cultural Probes without digging into the life context of our users would be misleading if we would not have asked the right questions to their occurrence, situations, and circumstances under which they appeared, and all possible factors that could be identified having impact on the situation documented. So, to conclude the requirement elicitation of the TOPIC project, we conducted final interviews with all participating informal caregivers in Austria and in Germany: Among others, we talked about the Cultural Probes and their usage.
Keeping the diary was well accepted for most of the informal caregivers. Two of them really enjoyed writing in it: “It was for me a little bit like writing it off my chest. It was like a therapy.” (Mrs. Liebe,[3] 59 years, cares for her daughter) or “Writing the diary is also a distraction […] to me at least” (Mr. Sorgsam, 62 years, cares for his wife). Some others stated that writing the diary was very time-consuming: “My husband said that I am spending a lot of time on the diary.” (Mrs. Liebe, 59 years, cares for her daughter) or “No, it wasn’t difficult but sometimes time-consuming. […] You have to sit down and […] and say ‘I am not here right now’.” (Mrs. Reisende, 75 years, cares for her husband). Keeping the diary was hard or not possible at all for a few users: “I have difficulty with writing.” (Mrs. Wandern, 71 years, cares for her husband) or “To be honest, I didn’t write anything. I took it once but didn’t wrote anything.” (Mrs. Netzwerk, 57 years, cares for her mother) or “Yes, I did not write that much in it. During the Christmas holidays, I am more stressed than when the child is not here.” (Mrs. Ehrenamt, 55 years, cares for her daughter). Whether and how our users kept their diaries and their mentioning it during the interviews – besides the analysis of the documents they delivered – informed us about their daily schedule, their tasks and the interruptability of their tasks. This gave us hints about the design and interaction modalities of our platform. E.g., the information architecture of the data we provided in the platform was based on this information. The portion of data which could be consumed in one piece had to be small enough to fit into the time slots that caregivers have to spend for additional activities rather than care giving.
One sheet of the actimoClock of one of the Austrian users and its corresponding color legend.
The users kept their diaries in different ways: Some wrote about their daily schedule, some about their feelings and/or some just wrote keywords about the highlights of their day (Figure 3). Either way, we as researchers benefited a lot from it: We were able to read in how many diverse tasks our informal caregivers were engaged with during a day, which activities or situations caused them the most stress and which feelings, problems and burdens they had to face [30]. Knowing that helped us to develop mechanisms in our platform to reduce stressful activities by providing them tools to ask their questions, delegate their care work – if possible – to their family members or friends, or share their burden with others, both with professionals and peers. We learned about many things that were not discussed in any of the interviews or informal talks before and were able to address these issues while going roughly through the diaries with the informal caregivers. So, Cultural Probes helped us to create a dialog with caregivers to better understand their situation. This was possible because on the one hand, the informal caregivers were able to decide about time, place and duration while using this type of Cultural probe. On the other hand, writing a diary is free of any observation and therefore of less prone for bias related to the researcher who is observing [8]. It was obvious that the users were able to stand back from their situation and reflect on it while writing the diary [39], [30].
Cultural Probes, if designed carefully, enable gathering multimedia data about the users, their environments, and circumstances. This makes Cultural Probes to very useful tools to guarantee the soundness of the data captured. Seeing the user context from different perspectives, by help of different formats like text or photo, is a precondition to decide the right features and services for the prospective users. In our study, photos in addition to the diary, especially to support the written words were very useful for us. We could identify which artefacts and situations were important for our users. In the design of the platform and its elements we considered these artefacts and situations as main elements. In specific, the photos showed us that there were so many other things having important impact on the life of our users that we were not aware of and needed to be discussed during the interviews, like the importance of a visit of a friend of the daughter to the mother, because she was so happy to see her daughter socializing and having fun with her friends (as documented in a photo captured by the polaroid camera and attached to the diary) [30]. Even for our users who normally have very little time to something else which is not related to care work, taking photos with the provided polaroid camera worked very well. They liked it to have the photos immediately developed. Some even wanted to keep these photos for themselves. This shows how important it is to consider such elements in Cultural Probes that are fun to use and playful. Additionally, taken polaroid photos inspired us to think about possibilities for sharing private data with others at the platform, because we learned how much our users are ready to share with each other.
Two examples of the actimoClock from German users.
Social map from two of the German users.
The feedback from our informal caregivers about using the actimoClock was quite positive – most of them could easily use it (Figure 4). However, a few users didn’t fill it in because they didn’t understand or were confused by it. This shows that it is very important to keep the elements of Cultural Probes very simple and clear for interaction. During the final interviews, two users pointed out that having smaller time slots on the actimoClock would have been more appropriate for them because they had several tasks lasting shorter than an hour. ActimoClock with pre-defined time slots was complementary to the diary with self-defined time frames, by assuring our understanding of the granularity of time structures of our users.
Like the diary, filling in the actimoClock was a self-reflecting task: One user realized that he is now spending less time at his care receivers’ place after the days decreasing in length due to the changing seasons:
“Well, during summer I never left her before 9pm. […] Because then it was bright as day until 9:30pm or 10:00pm. […] And now, now I am already at home around 7pm or 8pm. […] Yes and in the past, I went outside in between and then went back in. Now you cannot sit outside.”
(Mr. Sorgsam, 62 years, cares for his wife)
Some users, who already wrote a detailed schedule into their diaries, duplicated their work in the actimoClock. For other users, the combination of the diary with the actimoClock gave us an insight into the daily life of our informal caregivers that is, e. g., not always ending with sleeping time. Furthermore, it was interesting how our users categorized their activities or tasks during the day and how similar these categories were: E. g., the three most commonly created categories were – unsurprisingly – “care”, “household” and “free time”. Through actimoClock it was possible to ask our users about their recorded activities to certain points of time during the day. Using only a diary would not necessarily have facilitated the capturing of that type of information, because diary entries alone were usually too short to describe the whole picture of the occurances and emotions attached to these.
Users improvise while filling in the Cultural Probes if there are no clear instructions about their application. As the researchers in the German team decided to give less instructions for the use of the probes (for instance, they didn’t provide the structured color scheme), the participants in Germany used the actimoClock in a slightly different way: Here, the participants wrote their diverse daily activities, care related or not, in the clock and sometimes illustrated the entries with smileys (Figure 5).
Most of our informal caregivers used the offered emoticons in their diary as well. Furthermore, some informal caregivers took advantage of the opportunity to create their own emoticons and visualized missing emotions in the set provided, e. g., “I am tensed up” or “I am stressed”. With the use of the emoticons, the written words were strengthened in their meaning and feelings could be communicated easier from the users to the researchers [30]. The combination of actimoClock and emoticons offered us the possibility to extract which tasks caused negative or positive feelings. Compared with the diary, we were able to gain insights into the individual circumstances that influenced mood swings.
Not all users were able to fill in the social map how they were conceptually designed for. Although we gave a short introduction while handing over, it was not clear for all of them what to do with them. So, we just received six filled in out of ten social maps in Austria (Figure 6). Nevertheless, these gave us in some cases additional information about the social environment of our informal caregivers that was not already discussed in interviews or informal talks before. Next to the diary and the actimoClock, the social map offered the opportunity of self-reflection. That was perceived partly positive and partly negative by our informal caregivers: Some users reported that they were unpleasantly surprised how few contacts they have and some other users pointed out during the interviews that they were positively surprised about how many contacts they have. Asking directly about the problems that our users might have was intrusive and should be avoided in the design of Cultural Probes. For instance, it was delicate to talk about the lack of their social environment, especially after loosing it due to their care situation.
Based on our experience from a previous research project (kommTUi) [47], picture cards were regarded as useful tools to move users to think about certain things. In kommTUi, we created a welcome package for our elderly users to think about their communication channels they normally had to exchange with their friends or family members, how they spent time with others, what their preferences were, etc. The response was very good. We used these cards at our first workshop in kommTUI (which was rather at the beginning of the project and one of the many workshops throughout the project) with them, as a starting point to talk about their communication habits. Unfortunately, we could not gain the same positive result in TOPIC. Picture cards were not the right way to confront our informal caregivers with different care situations, as we did it in previous projects: Most of the users didn’t fill them in at all. The majority of our informal caregivers pointed out that they were not able to get any understanding to the shown care situations: “I was not doing it because I didn’t have any connotation to it.” (Mrs. Adrett, 58 years, cares for her husband) or “It says nothing. The first picture tells something but the others are not relevant.” (Mrs. Wandern, 71 years, cares for her husband). We believe that picture cards should be used only then when one knows more about the users, their lives, their problems. The cards must be selected very carefully and really address the users to trigger certain feelings and thoughts to discuss with. However, the disregard to the picture cards gave us the possibility to have a hook for the interview we carried out and to address some questions related to the pictures we were still interested in.
All informal caregivers used items from the kit, in some cases across the whole period of time. But the preferences and intensity of the use varied: For example, the four male caregivers didn’t wish to keep a diary, but used the camera, the stickers, and short notes, whereas three of the women engaged with the diary enthusiastically. One of them was writing a care diary anyway and another one referred to her former positive experiences with a diary. In respect to the frequency of the use, some of the participants in Germany used the actimoClock daily and “reported” about the multiple events and feelings of the day, but there were days that were left blanc or just illustrated with smileys of a bad, sad, or exhausted mood.
Generally, the feedback to the Cultural Probes was positive. No one completely refused to use the probes. We used this material (diary entries and pictures) mainly as a stimulus in the later interviews to encourage the caregivers to explain their entries in detail. In most cases, the descriptions of the daily routines remained reasonably consistent over time, with just a few minor alterations in routine.
6 Discussion and Conclusion
In the phase of our research project described in here (covering the first year that was the phase of requirement elicitation), we were on the one hand, interested in the major characteristics of the routine care and the coordination work of elderly informal caregivers. On the other hand, we aimed at formulating first implications for design for our field of informal care practice based on the findings. As described in the paper, our ethnographic approach hit the walls during that time of the phase of requirement elicitation based on the peculiarities of the sensitive and private setting, but also the demanding task of doing care work. As we intended to gain insights about care work but couldn’t stay in the families 24/7 in order to observe and note the practices and routines, we turned to Cultural Probes.
The Cultural Probes covered above were useful additional tools [10] to our ethnography – and no “pure substitute”: The extracted data from Cultural Probes can enrich the ethnographic research because they deliver information that is not always accessible by interviewing or observing situations [12], make the care work more visible, [45]. Above all, the feedback from the participants about their experience with the probes was interesting: When we, as researchers, were picking up the TOPIC Cultural Probes Kit most of our informal caregivers didn’t regard their provided information as useful for our research. Although we always emphasized our interest in their care work and routines, they perceived that work as a part of their normality and everyday life, illustrating the recurring events of care practices. But we obtained a lot of important insights into the daily life of our informal caregivers, also in the joint reflection, the interviews about the probes and their contents that we carried out when picking up the probes.
Along with the recollection of our experiences and conclusion, we would like to point at some pros and cons of the use of Cultural Probes in TOPIC in this sensitive context: Positive aspects of the choice of the Cultural Probes were that 1) we thereby realized more diverse methods (in respect to the whole project), additionally to our participants’ observation and the interviews, 2) that the information derived from the Cultural Probes’ material complemented our findings from the observations and interviews, especially in relation to everyday situations when we (the researchers) were not around. This is of special importance as there are natural limitations of observations, especially in this sensitive field of informal caregiving. On the other hand, writing a diary, filling in the actimoClock, taking a photo with the polaroid camera, etc. is free of any observation and therefore of any bias related to the research who is observing or asking [8]. Furthermore, 3) with the TOPIC Cultural Probes Kit, we tried to pay respect to the private sphere of the families because they were free to choose what kind of information they really wanted to provide and in which amount they do that. They were more flexible in relation to their time schedule (in contrast to interview and observations appointments). And, 4) the freedom of choice of the different items in the kit payed attention to individual preferences regarding materials and habits, education, etc. For instance, writing a diary was a common practice for some of the female users in the study whereas the male participants didn’t choose that option. The choice of writing a diary met former positive experiences and practices for the female participants. Others really liked the polaroid camera as it recollected memories about their own old polaroid cameras.
Another positive feedback 5) included the resume that using the probes for daily reflection for some days was also “more time for oneself”. Usually, many informal caregivers collect information about the patient, changes in the medication, etc., but there is less “space” for focusing on themselves. The Cultural Probes supported them in their self-observation and self-reflection. The talks with us about the Cultural Probes, even underlined this finding. Finally, we recognized that 6) some items from the kit (mainly the actimoClock) were “more easily accessible” for the technical partners and designers in the team than our long observation protocols and interview transcripts (that most of the designers and engineers never read). Hereby, the Cultural Probes became a “communicative bridge” within the multidisciplinary project team in the co-design process.
Rather negative respectively challenging aspects were 1) that the users had to somehow “fulfill” another “task” in their daily agenda for some time. As our overall goal of the project was to lower the burden of the caregivers, we were quite worried about this method in the beginning. Researchers should decide very carefully if the method is appropriate for their context and how they are going to realize this method particularly. The participation in the project might be at stake if this is not done with certain sensitivity. Another issue is 2) the “cultural capital” of the participants of the study has to be taken into account. Especially education plays a major role in respect to the ability and willingness to reflect one’s own situation, to write that reflection down, etc. Furthermore, 3) some people might feel “exposed” by providing information about their daily routine, and 4) we also have to be aware of, be sensitive of the way how people deal with the implicit and explicit expectations of us as researchers. One last important – more methodological – point regarding the cons of the method is 5) that the created material is very complex, personal, and not easy to anonymize (pictures, a lot of names, dates, etc.). Last, but not least, 6) the use of the Cultural Probes method in the way we realized it confronted us with the lack of methods for analyzing the material properly. We came up with our own combination of methods of analysis, inspired from diverse qualitative approaches (which will be dealt with in further publications).
Although the decision for the use of Cultural Probes in our European project was based on former positive experiences in Austria, the concept was rather controversial for some members of the international research team at the beginning of the project. Especially for those who were trained as qualitative social scientists, this way of integrating the participants in the research and design process was not natural to their epistemological understanding at first because in ethnographic studies, this kind of “intrusion” in the everyday routines (by requesting certain “tasks” from the participants) is usually not realized. Besides the internal discussion, we reflected on other projects that used diverse forms of Cultural Probes and the associated pros and cons as Dourish [13] and Boehner et al. [2] summarized.
Nevertheless, we faced some serious limitations for our preferred data collection method (mostly participatory observations and informal interviews) during the qualitative phase of requirement elicitation (see above) that encouraged us to integrate the Cultural Probes in our ethnographic approach. The taken polaroid pictures, the entries in the actimoClock (especially those with just smiley stickers) and the social map served as “interview stimuli” – as subjects of conversations with the participants after collecting the Cultural Probes. As shortly mentioned above: Whilst explaining their entries and self-observation, most of the caregivers reflected intensively their own care routines and situation and were not just “informants” such as in interviews. From our point of view, this can be perceived as an important criterion for the quality of this kind of method within participatory design projects and processes. In later stages within our project, we came back to the results from the analysis of the Cultural Probes material from time to time, for instance, after the creation of the first prototype of the digital calendar. For some of the participants, the Cultural Probes served as references for their care practices and experiences along their (three years long) cooperation with us.
In summary, our use of the Cultural Probes here was neither a “pure substitute for ethnography” as Dourish [13] criticized the use of Cultural Probes in some studies nor intended to be “inspirational data” for the designers as Gaver et al. [17] pointed out, but an additional option for “making the invisible visible” ([19]: 31, [38], [45]) and gaining information about the care practices by the means of self-observation when ethnographic methods hit the walls.
Funding source: Bundesministerium für Verkehr, Innovation und Technologie
Award Identifier / Grant number: 837737
Funding source: Bundesministerium für Bildung und Forschung
Award Identifier / Grant number: 16SV608K
Funding source: Agence Nationale de la Recherche
Award Identifier / Grant number: ANR-12-AALI-0002-03
Funding statement: The TOPIC project and its research has been funded by the European Union within the AAL Joint-Program (AAL-2012-5-169), the Austrian Ministry for Transport Innovation and Technology (Austria, Project number: 837737), the Federal Ministry of Education and Research (Germany, Project number: 16SV608K), and the French National Research Agency (France, Project number: ANR-12-AALI-0002-03).
About the authors
Susanne Hensely-Schinkinger holds a Master in Medical Computer Science from the Vienna University of Technology and a Master in Nursing Studies from the University of Vienna. Currently she works as a PhD scholar at the Vienna University of Technology. Her research was integral part of the TOPIC project and her interests are centred on issues of technological support in the context of informal care.
Marén Schorch is a PostDoc researcher and leader of the junior research group “KontiKat” at the University of Siegen, Germany. She holds a PhD in Sociology and is specialized in qualitative social methods. From 2013–2016, she was head of the German part of the EU AAL project “TOPIC” (The Online Platform for Informal Caregivers). Her research and publication focus is in the fields of Computer Supported Cooperative Work (CSCW) and Sociology (qualitative methods and biography). She is especially interested in the way how people deal with extreme events, informal caregiving and health.
Hilda Tellioğlu is an Associate Professor at the Vienna University of Technology. As a computer scientist she has been involved with both research and teaching on: software engineering, design & development of information technology in networked (work) environments, computer support for co-operative work (CSCW) in systems design in health care work and in architectural planning, knowledge management, social networks, interaction design, tangible user interaction.
Acknowledgment
The authors thank all the informal caregivers and their families in Austria and Germany for spending their valuable and rare free time with giving us input for our research and especially opening their homes for our extensive participatory observations. Furthermore, we want to thank all professional care organizations and other gatekeepers for their great support. We want to thank our great research consortium in the project: http://www.topic-aal.eu. A special thank goes to Myriam Lewkowicz, Aparecido Fabiano Pinatti de Carvalho, Matthieu Tixier, and Lin Wan for their partnership and support in scientific issues and for our important and constructive discussions.
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