Aarhus, R., Ballegaard, S. (To be submitted to Pervasive Health Conference, 2011)
HomeHealthTour
A method for studying health and disease in the home
Rikke Aarhus
Department of Information and Media Studies, Aarhus University
Aarhus, Denmark imvsab@hum.au.dk
Abstract—The aim of this paper is to describe how a method for studying health and disease in the home, the HomeHealthTour, can be deployed to understand the domain for healthcare technologies and inform the design of new technologies in participatory design processes. The method was developed to address challenges of doing field studies in the home in PD projects. The method is based on the hypothesis that a tour through a home provides an enriched understanding of context of practice and that objects prompt untold stories of practice. In the paper we describe the method and refer to two of the HomeHealthTours we have made to discuss the method’s potential contributions. We argue that the method facilitates insights into broad or specific health related topics and that it enables participants’ active participation in grounding design in context.
Keywords-social factors; user centered design; pervasive computing.
I. INTRODUCTION
In this paper we introduce the HomeHealthTour; a method developed for studying health and disease in the home. The HomeHealthTour addresses the residents of a home and the everyday objects and practices related to the management of health and disease in their everyday lives. The purpose of the HomeHealthTour is to gain a contextual understanding of practices and objects related to non-professional management of health and disease in the home. Furthermore, the purpose is to provide a contextual basis for performing further design activities with participants, thereby grounding the design process in the home and in the lives of its residents. Thus, the HomeHealthTour is a qualitative approach to understanding the users’ management of health and disease in the home and a starting point for designing new healthcare technology, which supports user needs.
With the description of the method and discussions of the possibilities we wish to provide fellow researchers with a tool for conducting studies in the home and with suggestions of how to make the method operational. The paper is based on our experience with four distinct HomeHealthTours of which we will outline two. Our intention is to demonstrate and evaluate the method. Analyzes, design concepts and prototypes based on the performed HomeHealthTours are reported in [1, 2, 3].
A. Methodological challenges
The method is a response to methodological challenges related to the study of health and disease in the home as part of a participatory design (PD) process. While PD initially often focused on professional settings [15], many PD projects have since had the non-professional home as setting. For instance, routines in the home and use of domestic and communication technologies have been the foci of many research and development projects [11, 14, 17, 30]. Accordingly, a range of methods have been applied and developed for studying the home and for including the residents as participants in PD processes, using probes, video monitoring, and interviews [e.g.
21, 25].
In the past decade, an increasingly number of PD projects has focused on management of disease and health in the home and on the delivery of healthcare services in the home [6, 18, 21, 23, 24, 27]. The increased engagement with home and health within PD projects is a response to the current development of moving treatment into the homes and to patients themselves. This development is an attempt to decrease the burden on the healthcare sector due to e.g. the demographic development with many elderly people and an increase in the percentage of chronic patients [16].
Yet, studying health and disease in the home and in the everyday life of ordinary people poses several challenges. Not so much challenges in regard to access to people’s home which in many cases is easier to obtain than is the case in e.g. a private business as pointed out by Crabtree and Rodden [17].
Rather, the challenges are related to doing studies in the home.
For instance, how do we make observations without making people change their practice; which role, that fits naturally into the home, can a researcher be given; and how do we built trust to facilitate collaboration between researcher and participant in PD projects which often have a short timeframe? Some of these questions are also relevant when doing PD in professional settings [e.g. 10, 19, 31], but they are often reinforced when PD takes place in a home. A home is a complex environment [8]
organized different from professional settings with e.g. private and public areas [5]. Additionally, while much work takes place in a home, a home is also a place for relaxation and pleasure as opposed to a workplace. These features challenge the possibility of e.g. doing observations of people’s practices
around relaxation. Can you relax with a researcher in your home?
The challenges mentioned are general challenges when studying the home and not confined to health research in the home. However, there are circumstances related to health and disease that further challenge health oriented PD projects in the home. For instance, issues of health and disease may be considered private matters and may be intangible and difficult to put words on. Interviews, whether in situ, may not capture the essence of health and disease due to the intangibility, and observations may be experienced odd and interfering by researcher and participant affecting what they reveal. Long-term ethnographic field studies could ensure the close relation and trust between researcher and participant needed to get into the core of such issues but they are often not rendered suitable in design processes where the timeframe is short. Still health, disease and the home are complex topics and settings that necessitate a profound understanding before developing technologies.
In the following we outline our source of inspiration, and describe the method and its application. We then explore the possibilities of the method and compare it to other methods used to study the home, especially focusing on the participation of the participant.
II. TECHNOLOGY TOURS
The HomeHealthTour is placed within a tradition of qualitative research methods and relies on both observation and interviews [12, 26]. Qualitative methods can have broad exploratory approach or be rather focused on particular aspects of a given phenomenon. A number of studies have focused on the home and the use of domestic technologies by carrying out a ‘technology tour’. Development of the HomeHealthTour is highly inspired by the structure of the technology tour, but is focused on health and disease.
When Mateas, Salvador, Scholtz, and Sorensen [25] visited different homes their aim was to obtain a model of daily home life in order to design future domestic technologies. They made a home visit where they talked informally over dinner with the family members and then took a tour through the home. Next they worked separately with adults and children asking them to lay out their house on a board by going through daily activities.
Baillie, Benyon, Macaulay, and Petersen [7, 8], referring to [25], also work with methods for studying technology in the home and involving residents in designing new domestic technology. The home visits carried out by them consist of a technology tour, discussion of scenarios and future devices, discussion and design, and critique and redesign. The technology tour consists of a series of tours through the home with the family together and with each individual focusing on:
the present technology in each room; the location of the technology; the users of the technology; activities supported. In the analysis conflicting views on technology (ownership, physical organization and use) between different household members were identified, and represented in the shape of maps of the home as perceived by individual household members and a consolidated map.
Also Blythe and Monk [14] study the home through home visits consisting of a technology tour, last time questions, a personal history interview, a guided speculation on future developments and three wishes for products. Their aim was to gain an understanding of use and limitations of domestic technologies to develop new products.
We were inspired by this body of work in the development of the method presented in this article. Hence the HomeHealthTour method is an adapted but also refined version of the outlined approaches focusing on health and disease rather than domestic technologies as such. The focus of HomeHealthTour is on objects, which might be a technology but can also be a stone collected at the beach. Furthermore, we do not only focus on the practical use of objects or their ownership in the HomeHealthTour. Rather, we want the objects to be catalysts for stories about health and disease, which generate knowledge on how health and disease are managed in the home, and to inspire future designs. While the HomeHealthTour resembles technology tours in structure, the focus and approach are not similar.
III. THEHOMEHEALTHTOURMETHOD The HomeHealthTour is a method that has a broad scope in regard to who can participate, cutting across age, educational background, and physical abilities. The tours can have just one or several participants as guides depending on how many overemphasize conflicts rather than the family as a collective and its mutual intelligibility. We believe the collective aspect of healthcare to be vital as issues and activities regarding health and disease often are collaborative; from food preparation to the planning of sports activities and from visits to the doctor to assistance in rehabilitation exercises.
A HomeHealthTour consists of five phases 1) preparation, 2) briefing, 3) guided tour, 4) creative activities, and 5) debriefing, which will be described in the following.
A. Preparation
Before commencing a HomeHealthTour several issues needs to be considered. First, the team of researchers must define the objective of the HomeHealthTour. What are the guiding research questions to be answered? These research questions may go through several iterations and evolve over time as the PD process takes its course.
Second, having decided on the research objective, sampling becomes important. As in other qualitative research, it is crucial for the validity of the findings that the profile of the participants (e.g. age, civil status, possible diagnosis) matches the objective. Neither do the sampling methods differ from other research designs and hence participants can be recruited through for instance relevant organizations (e.g. patient associations), on the street randomly or through the snowball effect [12]. However, using close friends or relatives as
participants is not advisable to avoid limitation in what is shown and seen on the tour due to existing knowledge on the participant and/or the home. In regard to participants, it is also important to consider possible agendas or (conflicting) interests of participants to be able to respond to them when interacting with the participant to ensure the drive of the tour.
Third, the home as a setting sets a limit to the number of researchers that can participate. Both due to spatial circumstances, but also not to overwhelm and outnumber the participants leading to an unbeneficial shift in the power relation between participant and researcher, host and guest.
This does not exclude software designers, project partners representing companies and others to participate, rather it will strengthen the multidisciplinary approach, but it must be done in consideration of the balance between guests and hosts.
B. Briefing of Participants
Each tour or visit in a home begins with a briefing, which has several purposes: First, it informs the participant on the researchers’ agenda, goal and success criteria. Second, it allows the researchers to obtain an informed consent from the participants. Third, it works as a matching of expectations and finally, it establishes rapport between participants and researchers. While these aspects are essential in all participatory research, they are indeed important here as the study takes place in the participant’s private domain rather than a neutral place.
A briefing can take place while eating dinner or having cake paving the way for a good time, showing the participants that the researchers are willing to bring something, however symbolic, into the relationship and not only expect to receive.
A briefing also establishes mutual trust and understanding. A careful briefing is vital to avoid or overcome a dismissive attitude of the participant and ensure collaboration between participant and researcher.
C. The Tour
After the briefing, the family members and the researchers take a tour around the home guided by the family members. A tour lasts approximately one to two hours. During the tour the participants are encouraged to point out and describe objects that in their opinion directly or indirectly relate to the defined research topic. Pointing out the objects participants are prompted to explain: 1) relation to research topic, 2) reason for location 3) routines and use 4) who are the users 5) the history of the object, 6) stories connected to the object, and 7) relations that transcend the home.
While being respectful, researchers should not withhold questions regarding what may be considered private issues or about objects not immediately pointed out by participants.
Sometimes an open discussion, which allows the participant to explain the context of the object, eases the potential tension, bringing normalcy to the situation. In addition, all explanations or answers of the participant should not per se be taken at face value but can be questioned by the researcher as the HomeHealthTour progresses. This incites the participant to reflect on their statements and hence improves the validity of the input. A balance, however, must be obtained between
pursuing questions on the on hand while being aware of ones own position, bias and role on the other hand.
To be able to make a preliminary analysis with the participants immediately after the tour, the objects singled out should be summarized. Researcher might for instance bring a Polaroid camera or ask the participant to note down the identified objects (figure 1).
Figure 1. One of the participants in a HomeHealthTour with a notepad to note down the objects singled out through the tour.
Furthermore, premade cards with pictures of e.g. running shoes and medication and some empty cards, where unanticipated objects could be noted or drawn, could be utilized as documentation. A box for collecting the objects or parts of them could also serve as documentation to use in the subsequent analysis although a risk is that many of the objects do not fit into a box.
The tours are videotaped by one of the researchers or one of the participants. The recording is the researchers’ tool to base the subsequent analysis on and to share the HomeHealthTour with fellow researchers. Video recording should be sensitive to participants (figure 2) who may feel uncomfortable being videotaped, e.g. by directing the camera exclusively at the objects.
Video recording of all phases is important, as it will facilitate multidisciplinary collaboration at later stages in the design process and enable knowledge sharing with project participants who were unable to take part in the HomeHealthTour.
Figure 2. The researcher points the camera directly at Sarah, on the left. Anna, on the right, feels uncomfortable and hence the
camera is pointed at the object in question, the bed.
D. Creative Activities
Following the guided tour participants and researchers engage in creative activities to initiate an analysis of the data and/or to generate design concepts. The creative activities are
recorded on video for later analysis. The active participation of participants is inherent in different stages in PD processes. The HomeHealthTour method ensures that these activities are grounded in the home, in the lives of the residents and in their understanding of their practices. In this phase, the participant may be pivotal in the development of a new design concept, which can spring from an exploratory tour. Or, the participant may be introduced to existing design concepts, which is to be adjusted in a second iteration with the aid of the participant.
The creative activities, whether aimed at analyzing the tour or at generating design concepts, may be inspired by general PD techniques as for example the Inspiration Card Workshop [20]. The cards utilized could either be premade (figure 3), cards manufactured during the tour, physical objects or other artifacts that document the discussions from the guided tour.
Figure 3. A participant in a HomeHealthTour uses premade cards to inform a design concept.
A way to analyze data can be to categorize the dataset identifying key themes and the differences, similarities and relationship between them. Such analytical activity may take the shape of a card-sorting [28]. When the participant goes through the cards, he or she makes a new pile when an object that does not belong to the rest is identified. The resulting piles provide an overview of themes in the data and point out areas that need further investigation or discussion. Using a string to visualize connections will highlight relationships e.g. in terms of who uses the objects. A different approach may be to create maps of e.g. the organization of a special category of objects as inspired by the technology tours [8].
Note, that we make a distinction between the purpose of the guided tour and the following creative activities. The aim of the guided tour is to obtain an understanding of the field or topic in question while the aim of the creative workshops is to create solutions to identified problems. We believe that it is important to separate the two phases to allow a broad understanding of the domain before seeking solutions to the challenges through PD activities thereby avoiding the identified solution to govern the remaining part of the tour.
E. Debriefing
Each tour ends with a debriefing with all participants, which is videotaped. A debriefing has several purposes. One is to make room for reflection on the content of the tour and another is to discuss and validate the provisional findings. The debriefing may take place immediately after the tour but can also take place a couple of days later. Debriefing directly after the tour allows for more immediate comments on the tour
while a later debriefing gives the participants time to reflect on central topics and the researcher to do additional analysis.
IV. HOME HEALTH TOURS WITH SARAH AND ANNA adaptability to different types of participants.
The two HomeHealthTours we present below, Sarah and Anna, represent diversities in terms of the participants’
characteristics and in the use of the method. The two HomeHealthTours were made in connection to two projects.
The (omitted for review) project, which Sarah participated in, is now completed and explored the possibilities of supporting pregnant women with diabetes with technology in their disease management and collaboration with healthcare professionals.
The project (omitted for review), Anna participates in, is ongoing and aims to develop technology to support seniors in doing the home-exercises in a rehabilitation program for chronic dizziness. Both projects focus on the home as an arena for health related activities and on non-supervised healthcare activities in the home.
A. The Two Tours 1) Sarah
Sarah is a woman in her 30s who lives with her husband and four-year-old daughter. She has type 1 diabetes. Sarah and her husband both work outside the home and their daughter is
Sarah is a woman in her 30s who lives with her husband and four-year-old daughter. She has type 1 diabetes. Sarah and her husband both work outside the home and their daughter is