The Healthy Home project explored how technology may increase collaboration between patients in their homes and the network of healthcare professionals at a hospital, and how technologies may be used to support patient self-care. Pregnant women with diabetes undergo frequent checkups at an outpatient clinic, where they are seen by up to seven specialists who monitor the pregnancy and condition of the mother, and guide the women in performing self-care. The women often spend much time commuting to and from the hospital, which is difficult to incorporate into an active life that includes working full-time. A technological solution, called the eDiary, was developed, and a month-long pilot study, in which three pregnant women with diabetes used the eDiary, was carried out.
My participation in the project involved ethnographic studies of practices and experiences of the treatment. I was also involved in the participatory design process and the development of the eDiary. Furthermore, I participated in the evaluation of the pilot
study. The project lasted from 2007 to 2009, and the partners were Logica (previously WM-data), Polycom (previously KIRK telecom), Aarhus University, and ISIS Katrinebjerg. Aarhus University Hospital (Skejby Sygehus and Århus Sygehus) also participated closely in the entire project, which involved both patients and staff (ISIS Katrinebjerg 2007, 51).
Method
I used two different approaches in exploring the Healthy Home and ElderTech projects:
ethnographic fieldwork and participatory design. In the following sections I will first outline the research traditions of each, then discuss how design may benefit from a combination of these two traditions, and finally, illustrate how the two were intertwined in the various case activities during the PhD project.
Ethnography
Ethnography was a useful approach for exploring the two cases introduced above and their transformations, as this discipline relates to the study of diverse aspects of social life and cultural phenomena. This discipline involves analytical efforts of comparison and identification of patterns across studies. Moreover it involves continuous reflection and search for exceptions, in order to test the validity of the analyses of phenomena, patterns, or theories generated on the basis of empirical studies. Thus, ethnography “refer[s] to an integration of both first-hand empirical investigation and the theoretical and comparative interpretation of social organization and culture” (Hammersley & Atkinson 2007, 1).
Central to ethnography is a concern for how people perceive the world, and understanding their perspectives on practices and diverse phenomena. An important way to achieve this understanding is through extensive fieldwork, as promoted by Malinowski (1978), and becoming a part of the community one seeks to study. One much-used method in fieldwork is participant observation, where the goal is to situate oneself within the field by participating in the daily life and practices of the community, trying to understand the society from within. On the other hand, the ethnographer is simultaneously situated outside the field by his or her observation, interpreting the practices within a theoretical framework, or constructing a new theoretical framework that conceptualizes the identified patterns of practice (Eriksen 1993, 28; Schensul et al.
1999, 91). A foundation for doing ethnography is the realization that the ethnographer him- or herself is the research tool par excellence: “…knowing, for ethnographers, is first
and foremost experiencing by observation, participating in conversations and daily activities of members of the community under study, and recording these observations”
(Schensul et al. 1999, 72; see also Hammersley & Atkinson 2007, 17).
The use of fieldwork to gain an understanding of how people make sense of the world makes ethnography valuable in numerous settings, and for studying many issues.
Traditionally, ethnography has been devoted to the study of societies and phenomena strange and exotic to the ethnographer, such as witchcraft among the Azande people (Evans-Pritchard 1937), structures in tribal kinship classifications (Lévi-Strauss 1969), or rites of passage (van Gennep 1977). Today, the attention of ethnographic studies is not only turned toward the distant and exotic, but also toward an understanding of practices in Western societies: Understanding illness and healing is not only a matter of studying the health of children in Uganda (Meinert 2008), but also concerns practices in Denmark that relate to suffering from chronic illness (Wind & Vedsted 2008), implementation of electronic patient records at hospitals (Bossen 2006), or fertility treatment (Tjørnhøj-Thomsen 2005).
Paths of the ethnographic study
Ethnographic fieldwork has been pivotal to this PhD study, and has proved useful in the effort to gain an understanding of how the participants in a study perceive new healthcare technology and the transformations of practice. The ElderTech study and the Healthy Home project offered a wide field of investigation, and the dissimilarity of the two cases provided multiple paths for pursuing categories and patterns.
In uncovering and following the multiple paths of investigation, I spent time with the elderly participants in the ElderTech study, familiarizing myself with their everyday lives, observing the installation of the assistive technology, Roberta, in their homes, and discussing how they used and experienced Roberta7. Furthermore, I followed healthcare professionals (a nurse, a social and healthcare assistant, and social and healthcare helper) caring for the elderly, helping them with bathing, cleaning the homes, injecting insulin, and assisting with medication administration. I also interviewed the healthcare professionals prior to and during the ElderTech pilot project. Furthermore, I visited senior citizen communities, to learn about the experiences of the seniors with various housing arrangements (Aarhus et al. 2009b) and was given guided tours of their homes, to acquire an understanding of how healthcare is perceived and practiced in the home.
7 See all the interview guides for the ElderTech study in appendix A
Similarly, I observed practices at the outpatient clinic where the pregnant women are treated: sitting in on consultations, observing the practices of the obstetricians, midwives, diabetes specialists, and dieticians, participating in coffee break discussions of “what just happened”, and listening to discussions among colleagues on cases; this was supplemented with formal interviews8. I also shifted my focus to that of the pregnant women in order to understand their experiences, and followed them as they moved around at the outpatient clinic. I have been with them when they arrived at the ward where they give blood samples for testing blood glucose levels; stood in line with them to check in with the secretary at the clinic, to let the staff know that they had arrived;
observed how the women take part in the record-keeping and self-monitoring when they weighed themselves, processed urine test strips9, and measured their blood pressure; sat in the waiting room, killing time until they were called by the specialists. The women were interviewed in their homes, both for part of an exploratory study, and for part of the evaluation of a prototype in the Healthy Home project.
Thus, by pursuing various paths in my fieldwork, I investigated healthcare and technology in the home from various perspectives, exploring how people live and how they experience life in different home environments, how they practice and perceive healthcare and disease in the home and at the hospital, how they interact with existing and new technology, how healthcare professionals experience caregiving, how their work practices interact with the self-care practices of patients, and how they interact with existing and new technology. These paths made it possible to observe the encounters between people and new healthcare technology, and to explore transformations, as the users – both patients and the healthcare professionals – appropriate the technology, routines emerged, and networks were stabilized. Next, I will account for some of the concerns guiding my choice of paths of investigation.
Methods for condensed fieldwork
A main concern during the PhD project was how to carry out fieldwork in the homes.
Obtaining access to the homes was not difficult, as my involvement in projects aimed at developing new healthcare technology granted an access to the homes of the elderly and the pregnant women with diabetes who were study participants. However, a main concern was the role and presence of the ethnographer in home: How does an
8 See all the interview guides for the Healthy Home project in appendix B
9 The test measures glucose, ketone, protein, nitrite, and leukocyte in the urine.
ethnographer study practices in the home in such a way that the situation does not become awkward for either those living there, or for the visiting ethnographer? How can practices of disease management and healthcare technology and perceptions of these practices be explored in the home?
It takes time to establish a good rapport with participants in their homes, and to build a relationship of trust and reciprocity, which is vital to participant observation. Some of the elderly persons in the ElderTech study participated in the project for approximately six months, making it possible to establish relationships, and participate in their everyday lives: visiting them in their apartments, following them in their shared activities of eating lunch together, working out, having their Friday afternoons together, drinking coffee and singing.
Apart from the efforts to establish relationships over a longer period, I also applied a second strategy of experimenting with shorter visits to the homes of the participants. For short visits, it was essential that there be a specific purpose for the visit. This provided a basis for quickly establishing a mutual agreement between the participant and the ethnographer regarding expected behavior and the outcome of the visit. In the Healthy Home project, formal interviews provided mutual understanding of the form and purpose of the visit, namely, an oral account of experiences of living with diabetes while being pregnant. To tie together oral accounts and practices more closely, in paper 6 my co-author and I describe experiments using a method that we called the HomeHealthTour.
The visits to participants’ homes consisted of guided tours of the homes, where the participants would point out objects that they considered to be related to their management of health and disease. The HomeHealthTours method was an attempt to condense fieldwork in time and space, quickly homing in on experiences and practices regarding health and disease. Similarly, the HomeVisits consisted of visits to senior citizen communities, where the participants would show us where they lived, while explaining their reasons for moving into the senior community, and their experiences with growing old in specific housing arrangements (Aarhus & Ballegaard 2008).
The aim of condensed field studies is to prompt focused conversations on given topics, grounded in practice and in the context of the home. The rationale behind this is that, while such visits may only offer small glimpses of practices, many such visits may provide more profound, cumulative insight into broader patterns. Based on the considerations of balancing time and potential insights, I made ongoing decisions
regarding different paths of investigation, varying the lengths of the visits to peoples’
homes, and the context of the home.
The observations and conversations were documented differently. Informal conversations during participant observations were written down, resulting in extensive fieldwork notes, while most interviews were recorded and transcribed. Video recording was utilized when it was necessary to document the exact interrelation between objects and speech, such as the guided tours during the HomeHealthTours, and the installation of assistive technology in the homes of the elderly. This documentation provided an extensive basis for categorization and analysis of practices, and understanding health and new healthcare technology in the home. An overview of the fieldwork activities is listed in figure 3.
Interview sessions:
Elderly/patients*
Interviews:
Healthcare professionals
Interviews:
Other participants
Hours of observation
ElderTech project Exploratory phase
12 6 34
ElderTech project Pilot test
10 6 2 (project
manager, technician)
28
Healthy Home project
Exploratory phase
10 4 1 (secretary) 61
Healthy Home project
Pilot test
3 4 10
HomeHealthTours 3 11
HomeVisits 6** 3 (managers) 11
In sum Interviews: 44 Homes: 50 Persons: 74
20 6 155
Figure 3: List of field study activities
* The spouse participated in, or was present during nine of the interview sessions.
** Two of the interview sessions were group interviews with up to 12 participants
Sampling and bias
The study is based on deliberate sampling and on volunteer participation (not on randomized trials). In the ElderTech project, it was considered an advantage if the elderly participants took prescribed medication and received daily help, as this provided the
elderly with an opportunity to ask for assistance in operating the new technology. In the Healthy Home project, the sampling addressed type I diabetes, variation in the use of the device for injecting insulin (pump or pen), and distance to the hospital.
Most important for the sampling was a willingness to participate, and consequently, the participants were mainly those who could manage the additional work. This led to concerns regarding bias in the studies. The dilemma is twofold, as the study concerned the development of new healthcare technology, on the one hand, while on the other hand, it was a study of practices of disease management. This potential bias was considered unproblematic with regard to the development of new healthcare, as the volunteers were considered the target group for new healthcare technology. With regard to exploring practices of disease management in the home, the potential bias was more problematic, as I wanted a broad sample, in order to learn about the numerous ways of managing healthcare and disease, and the utilization of existing healthcare technology.
However, the two cases complemented each other very well, as they involved two very different groups, and provided different and contrasting insights into how healthcare and disease are managed in the home. Furthermore, the sampling within the two cases turned out to be highly dissimilar. Additionally, following healthcare professionals during consultations with pregnant women with diabetes, or visits to homes of the elderly, provided small insights into a very broad range of problems faced by persons when managing their conditions.
Ethics
All participants were informed orally and in writing10 of the purpose of the projects. It was emphasized that participation in the projects was voluntary, that they could withdraw from the study at any time and without consequences (in the case of the elderly persons and the pregnant women) for their future treatment or care by the healthcare professionals. This was a great concern, as the participants were in a potentially vulnerable position, owing to their status (as elderly, or in need of having the condition of their baby and health monitored). Participant information has been anonymized in the analyses and presentations. Furthermore, all participants gave their informed consent, allowing us the use of photographs taken in their homes, or featuring them in other settings, such as workshops at the hospital or at the university. Workshops form part of Participatory Design activities, which I will introduce in the following section.
10 See appendix C for written information on the projects and for the informed consent.