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Interdisciplinary perspectives on homes and healthcare

The following is a modified translation of an article on hospitals at home written by editor Emma Klakk for the STAY HOME-website, published in Danish on December 20, 2023. STAY HOME: The Home during the Corona Crisis – and after is a research project funded by the Carlsberg Foundation and based at the Centre for Privacy Studies. We republish this article in English for the PRIVACY blog with an additional paragraph titled ‘Cross-pollination of ideas and perspectives’ describing the development of the collaboration on hospitals at home and some new reflections on the topic inspired by other PRIVACY activities in order to show how the past-present exchange cultivated at PRIVACY develops into new collaborations and publications in an ongoing dynamic between research into historical cases and involvement with current issues.

Hospital at home and home treatment – what does it mean for our homes?

In the STAY HOME project, we have extensive experience with interdisciplinary discussions, projects, and research. However, interdisciplinarity was taken to new heights on 12 December 2023 when we hosted an interdisciplinary and cross-sectorial workshop on hospitalization in the home (hereafter hospital at home) and home treatment. The participants were pharmacists, researchers in religious studies, nurses, lawyers, technology researchers, anthropologists, consultants, and historians. It was an enriching and inspiring day that left much food for thought.

the picture shows some of the workshop participants sitting at some tables.
We opened the doors to the Faculty of Theology at the University of Copenhagen, where STAY HOME is hosted, and invited researchers and practitioners from both academia and the healthcare sector.

The workshop was organized by the STAY HOME-project on the initiative of two social pharmaceutical researchers, professor Lotte Stig Nørgaard and external lecturer Janine Traulsen from Department of Pharmacy at the University of Copenhagen, whom we have previously interviewed for the STAY HOME-website. The workshop made a great impression on us in the STAY HOME project, as the PI, Professor Mette Birkedal Bruun, reports:

It was a terrific day. It is always exciting to see how, in interdisciplinary contexts, we can reach new insights through joint conversation, professional listening and questioning, as well as a good deal of sincere interest in learning from each other. As a university researcher, it humbles me to meet practitioners who deal with these issues on a daily basis, and the meeting between scholarly and practical perspectives was one of the great benefits of the day. In relation to our STAY HOME research, it made a particular impression on me that the home can function as a workplace not only for those of us who live in it [as is increasingly the case since corona], but also for people from outside such as healthcare professionals.

The purpose of the workshop was to initiate a debate on hospitals at home and formulate focus points for future research on hospitals at home and home treatment. We asked: Hospitals at home and home treatment – what does it mean for our homes? With this question, we wanted to open a debate on how hospitals at home and home treatment interfere with our perceptions of home, the everyday lives of patients and relatives, the work procedures and skills of different health professions, and our ideas about the role of public and private actors in nursing and treatment. First and foremost, however, we had to clarify what we mean when we use the terms home, hospital at home, and home treatment.

Concepts, definitions, and ideas

As we have experienced before in our interdisciplinary work, it is often necessary, albeit challenging, to clarify concepts when different disciplines are brought together. Concepts that are common in some fields may be unknown to others, but the same concepts may also be used differently within different disciplines. At the workshop, we soon became aware that there are different words for different kinds of healthcare, implying different kinds of care, patients, and professions. What we in Danish refer to as ‘sundhedspleje’ (health visiting) is different than ‘sygepleje’ (nursing) – concepts we do not normally deal with in STAY HOME. It may seem trivial, but it is important to use the right words to avoid misunderstandings: what seems a broad blanket term to a non-expert, may be a technical term for those who are in the know. The healthcare professionals pointed out that at the workshop we were interested in ‘sygepleje’ (nursing) – care of sick patients – and not the examination and counselling of (healthy) children and adolescents – which is the professionally correct, and to some extent etymologically implied, understanding of the word ‘sundhedspleje’ (health visiting) in Danish. Furthermore, as a sociologist and a church historian, we had to ask clarifying questions when healthcare professionals used abbreviations such as IV treatment (intravenous treatment: medical treatment directly into the vein).

In the more complicated area of concept clarification were definitions of hospital at home and home, which were two key concepts at the workshop. Are we talking about hospitals at home when the patient uses medicine and medical equipment at home? Is it a hospital at home if you sit at home and contact the hospital through a video consultation? We did not agree on a clear definition, but expanded the discussion to deal with home treatment, as we were particularly interested in discussing what happens to e.g. the home, family relations, patient safety, and working conditions when parts of the hospital treatment move into the home and when the home (at least for a period of time) becomes the healthcare professionals’ workplace.

One workshop participant, clinical nursing specialist, Louise Bangsgaard Antonsen from Rigshospitalet, who has many years of experience with home treatment, elaborates:

Home treatment and hospitals at home have gone from being a highly specialized area defined by the Danish Health Authority to becoming a political mantra and a management strategy in the past few years. Thus, several different disciplines and institutions influence this field and its development, but we need a serious clarification of concepts in this area to qualify the discussion.

One of the aims of the workshop was to include many disciplines in the discussion about hospitals at home and home treatment, but as Louise emphasizes, this professional and disciplinary diversity makes it even more important to clarify the core concepts. This work of clarification also includes a discussion about what the aim of hospitals at home is and should be. Another participant of the workshop, senior researcher within the field of working environments, Kasper Edwards from the Technical University of Denmark, clarifies:

The concept of ‘hospital at home’ is quite complicated. Since we do not have a good definition of a hospital, it becomes even more of a hassle with hospital at home. In the process of defining lies the need to clarify what the hospital at home should be able to do and for whom. Is consideration for the patient or financial considerations the decisive factor?

A concept is not neutral, but is enveloped in expectations, ideals, and norms about what the purpose should be and for whom. This is certainly true for the concept of ‘home’, which has been the focal point of many interdisciplinary discussions in STAY HOME. At the workshop, we kept coming back to the idea of the home: what is the good home and for whom? Which homes are suitable for hospitalization at home and a good setting for home treatment? Does clutter in the home mean that the patient and relatives are challenged? Or is clutter just a common condition in a home? There is normativity at play in our idea of the home, and it was emphasized several times that there are countless forms of home and that the nuances must not disappear when hospital at home and home treatment are implemented and developed. Hospital at home, like the home, is a complex phenomenon that invites interdisciplinary collaboration.

Interdisciplinary and cross-sectoral collaboration

When healthcare professionals, university researchers, and actors from the private sector are brought together, they may be hard put to agree on who should play which role in home treatment, or whether finances, inequality, or patient safety should be given the highest priority. It is important to bring many nuances into this debate and we covered a wide range of topics in our discussions. Interdisciplinarity can be both enriching and challenging, as senior researcher Kasper Edwards describes:

Interdisciplinarity is the key to a broad understanding of a complex phenomenon. The advantage of interdisciplinarity is the broad rapid first step towards an understanding of the phenomenon. One challenge of interdisciplinarity is the difficulty of converging due to large disciplinary differences. It can be difficult to assess what is the most important thing to focus on in relation to hospitals at home and home treatment, but that is the price of interdisciplinarity.

The picture shows the workshop participants sitting in two different groups around two tables
In addition to presentations and plenary discussions, the workshop comprised interdisciplinary and cross-sectorial group work.

Important research projects on hospitals at home are already underway in Denmark, but we still lack knowledge about the further effects of hospitals at home in a Danish context. The workshop was therefore very explorative, and we – as is natural at this initial stage – came up with more questions than answers. As participant in the workshop Andrei-Daniel Staicu, who is a master’s degree student at the Department of Pharmacy at the University of Copenhagen, observes:

One of the things that surprised me most about talking to so many smart people across disciplines was how little we actually know about the prevalence and consequences of hospitals at home for patients and healthcare professionals.

Therefore, one purpose of the workshop was to formulate focus points for future research into hospitals at home based on experience and research in related topics such as home treatment, video consultations, and the multifunctional home during the corona pandemic. Clinical nursing specialist, Louise Bangsgaard Antonsen underlines that

[i]t is essential for solutions in the future to examine existing evidence and experience, which is why I am also extremely grateful to have been invited to the workshop. In addition, the workshop provided me with a lot of new insights about the home, for example, and about what research outside the healthcare system can contribute to the development of home treatment.

The interdisciplinary and cross-sectorial composition of the workshop aimed to highlight nuances and diverse perspectives on hospitals at home and home treatment. We discussed the opportunities as well as the challenges of home treatment as there is rarely one without the other. In this connection, senior researcher Kasper Edwards highlights some of the insights he took away from the workshop:

Hospitals at home can have a major impact on patients and their families. On the one hand, it can be liberating and bring the patient back to normal. On the other hand, it can ‘hospitalize’ both the patient and relatives, while the home as a safe and secure space where inhabitants are in control can disappear.

Despite our different starting points, which sometimes led to conflicting points of view, the discussions were constructive and inclusive, as master’s degree student Andrei-Daniel Staicu also noted:

It was challenging for me as a student with less experience than everyone else at the workshop to think broadly and dare to share my knowledge and opinions. However, the other participants were friendly and supportive, and I quickly felt safe and became involved in the conversations.

We really learned a lot from the meeting across disciplines and sectors. There is plenty more work to be done, as Louise Bangsgaard Antonsen concludes:

It is a very relevant issue that was raised at the workshop, and our combined knowledge can have great value for the healthcare system, patients, and relatives if we get a little deeper and formulate our proposal for how the different concepts can be used and emphasize the importance of taking an interdisciplinary and critical approach to the development of hospitals at home and home treatment. I therefore hope that we will have the opportunity to meet and work together again.

Cross-pollination of ideas and perspectives

Since the workshop, we have met with the group a couple of times and been in contact to work collaboratively on a commentary on interdisciplinary and cross-sectorial perspectives on hospitals at home. The commentary is taking form and will hopefully be published in an academic journal next year.

On a political level, hospitals at home and home treatment have received renewed attention in Denmark. In September 2024, the Danish government proposed a new health reform to move the healthcare system closer to the patients in all parts of the country. This entails more home-based care such as digital solutions for home treatment of chronically ill patients, as well as establishing local teams of healthcare professionals for home treatment. The healthcare system is continuously in development due to changes in resources, types of illnesses, demographics, technologies, and ways of living, and historical perspectives can shed new light on these developments.

Recently, two PRIVACY colleagues, associate professors Natalie Körner and Johannes Ljungberg hosted the international workshop Building Early Modern Privacy at the Royal Danish Academy related to the two PRIVACY themes Home and Urban Space. Two presentations were particularly inspiring for the discussions of hospitals at home and thus also bridged to PRIVACY theme Health. Historian Emma Marshall presented her research on “Sites of sickness, places of privacy? The sickbed and social behaviour in English gentry homes” which focuses on eighteenth-century cases, and the architect Anja Fröhlich who presented a chronologically broad historical overview of hospitals in Europe, addressing “The Dilemma of Separation and Openness: Types of Hospital Architecture and their Impact on Patient Privacy”. Between them, the two presentations inspired a conversation regarding the influence of social, spatial, and economic resources on sick care in the home and in the hospital. Anja Frölich was asked about the role of the relatives in the hospitalization of early modern patients, and her answer was striking: hospitals were only for the vulnerable people without resources and social networks. The resourceful patients were treated at home with help from servants and relatives as shown by Emma Marshall. Such historical cases shed new light on home treatment today and incite questions regarding resources and accessibility: Are hospitals at home only a relevant possibility for privileged and resourceful patients? What role should the relatives play in home-based care? What will happen to the hospitals and the less resourceful patients if privileged patients are treated at home? It was an unexpected outcome that this historical workshop ended up influencing our current pondering of present-day hospitals at home, but the two presentations certainly help us ask new questions and consider new aspects of home treatment.

The cross-pollination of ideas and perspectives across the different projects, events, and disciplines engaged in, and sprouting from, PRIVACY keeps inspiring and motivating us for more interdisciplinary endeavours. Some of the outcomes of engaging in different disciplinary constellations are relatively straightforward, such as the examples above, other outcomes might be more tacit and implied, but still have an impact on our perspectives and the questions we ask.

Essay: Staying home – an opportunity for privacy or a threat to privacy?

‘Please stay home for us!’ Since the outbreak of the corona crisis, healthcare workers from across the world have been successful in crowding social media with this message to the public. Indeed, it seems sensible for the common good to follow their advice, at least out of necessity. Thinking about implications for privacy, as we constantly do at the Centre for Privacy Studies, it seems obvious to ask whether more time at home might not also have positive side effects in terms of privacy. To be sure, long before the modern era, the home has been defined as a private sphere, in opposition to the public square. Along the nineteenth and twentieth centuries, residential buildings have been gradually extended, isolated from each other and become places where an increasing number of people could benefit from certain legal rights to live undisturbed by the outside world (and to some extent even by their closest neighbours). Accordingly, privacy is sometimes described in terms of physical and mental autonomy or solitude, for example as ‘a state of being alone’.[1] With this background, one could imagine that the appeal to stay at home, apart from the apparent problems embedded in transforming it to a place of work, would resonate like a romantic invitation to an existence rich with valuable privacy, whether alone or with family.

Indeed, the corona realities liberate more time for ourselves or our families. But after several weeks almost entirely spent between the walls of our homes, does it really make sense to talk about life dictated by the virus as an existence beneficial for privacy? Although families get more time together – which can surely be valuable in many cases – children have had a rising need to get out. [2] In several countries, public playgrounds have been closed during the strictest lock-downs, and the Spanish government has only recently opened up for children under fourteen to leave their home one hour per diem. [3] As for people living by themselves, the order to stay at home tends to lead to isolation, at least after the first weeks of intense puzzling with crosswords and Netflix consummation. Mental disease, and even suicide rates, are expected to increase as a consequence of rising loneliness.[4]

When I first started to reflect upon how to approach the elusive topic of privacy, which surely escapes too narrow definitions, I was a bit sceptic to approaches that put too much emphasis on the individual’s inner life or a state of solitude. In my efforts to problematise such definitions, I was struck by a stimulating question formulated by Helen Nissenbaum, professor of information science at Cornell Tech: ‘Does a person stranded on an island really have privacy?’.[5] I still find it really difficult to motivate an affirmative reply on that question. Slightly reformulated, it seems to be quite applicable on the quarantine situation: Does a person locked inside his or her home really have privacy? Isn’t rather each family or household stranded on a desert island, although equipped with a decent WiFi-connection?

Professor Helen Nissenbaum (b. 1954)

Helen Nissenbaum has been highly influential in forming US legislation on informational privacy, which is partly based on her concept of ‘contextual integrity’ regarding public surveillance. The basic principle is that no information is private as such; laws must be formulated with regard to its social context. Together with the Canadian philosopher Michael Walzer’s concept ‘spheres of justice’, the framework of contextual integrity urges information gathering to define categories depending on the social norms of various contexts.[6] While Nissenbaum specialises in informational privacy, her heuristic questioning of whether there is reason to speak about privacy on a desert island with one single inhabitant implies that social relations might be an important factor when trying to understand what makes privacy valuable.

Considering privacy as a fundamentally relational phenomenon would suggest that valuable privacy would typically emerge as a response to social experience, in dynamic with others and the outside world. Indeed, this idea coincides pretty well with some creative approaches to study notions of privacy within the field of cultural history, for example as a protest against intrusion (from authorities or fellow citizens), an act of temporary withdrawal from social life or a need to cultivate more intimate relations.[7] This would not exclude the assumption that key moments of experienced privacy are taking place in more or less secluded physical spaces, or while the individual is fully occupied with his or her inner life. But it would encourage scholars in search of privacy to investigate how such moments are related to a social context (authoritarian or friendly) that provokes a need for privacy. It would also imply that long-term isolation might be a threat to privacy.  

If privacy is understood as a response to social experience rather than just in terms of being in one’s private sphere, the social isolation following on the plea to stay at home during the corona crisis may not contribute very well to evoke the values of privacy. But it does seem to suggest a clear-cut distinction between private and public responsibilities during the crisis: the private responsibility being to stay at home; the public responsibility to provide health care to those who need it. From a historical perspective, it might be most peculiar that people are encouraged to be passive. In emergency regulations for seventeenth-century Helmstedt and eighteenth-century Altona – two of the case cities that we are currently researching at PRIVACY – private responsibilities were generally of more active character. In order to prepare for the risk of fire, private people (Privat-Leuten) were ordered to be constantly on guard to provide the city’s functionaries with water and lighting, even in the middle of the night. Today we are barely asked for more than to provide ourselves (and our elderly) with food and toilet paper. Briefly, we are encouraged to fight the corona virus in our distinct private sphere. Having reached a high degree of specialisation and material welfare, today’s Western societies provide its citizens with both physical space and room for action to perform their private lives, in states of emergency as well as under more normal circumstances.

 

Extract from the fire regulation of seventeenth-century Helmstedt

One thing is sure. Setting our normal lives on hold and staying home gives us quite a unique occasion to ponder and experience what privacy is and what it isn’t. Does it make sense to us, under these extreme conditions, to regard privacy as a state of being alone or as an existence in our private sphere? Or does it rather correspond to our experience that long-term isolation, or the conditions in the private sphere, make it more difficult to experience privacy? We may take the opportunity to try to detect how ‘the corona human’ is seeking his or her privacy. Perhaps by borrowing a dog from the neighbour? It has been widely noticed that dog owners in areas with strict quarantine regulations have been lending out, or even renting out, their dogs to people desperate to get out.[8] The rising interest in dog-walks might satisfy many needs in terms of privacy. It might offer socially overwhelmed family members ‘a time of one’s own’. Obversely, individuals living in self-isolation can get an opportunity to escape their cells, which may help them to live through or, even better, benefit from further days in solitude. A third person might find the dog walking business a joyful way to outsmart the authorities and reconquer his or her autonomy. Perhaps these various efforts to leave one’s private sphere indicate that the state of emergency following on the corona virus is as much a threat to privacy as an opportunity for it? 

 

[1] E. g. Cambridge English Dictionary, ‘Privacy’. For a rich discussion on theories regarding privacy in relation to freedom and autonomy, see Beate Rössler, The Value of Privacy, Polity Press (Frankfurt am Main 2005) [2001], p. 43–76.

[2] https://www.nytimes.com/2020/03/17/parenting/coronavirus-quarantine.html

[3] https://www.thelocal.es/20200423/what-we-know-about-new-rules-for-taking-children-outside-during-lockdown

[4]https://ki.se/en/nasp/the-coronavirus-risk-for-increased-suicide-and-self-harm-in-the-society-after-the-pandemic

[5] Helen Nissenbaum, Privacy in context: technology, policy and the integrity of social life, Stanford Law Books (Stanford 2010), p. 71.

[6] Helen Nissenbaum, ‘Privacy As Contextual Integrity’, Washington law review, 79:1 (2004).

[7] See for example Barrington Moore, Privacy: Studies in Social and Cultural History, M. E. Sharpe, Armonk (New York 1984), p. xi, 71–73; Diana Webb, Privacy and solitude in the middle ages, Hambledon Continuum (London 2007), p. ix; Julie C. Inness, Privacy, Intimacy, and Isolation, Oxford University Press (New York 1992).

[8] https://www.thelocal.es/20200319/why-everyone-in-spain-wishes-they-had-a-dog-during-the-coronavirus-lockdown
https://www.nytimes.com/2020/03/27/nyregion/dog-walking-coronavirus.html