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Social Science & Medicine 67 (2008) 128–136

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Social Science & Medicine

journal homepage: www.elsevier .com/locate/socscimed

The two facets of electronic care surveillance: An explorationof the views of older people who live with monitoring devices

Anna Essen *

School of Business, Stockholm University, Kraftriket Bldg 2, 3, & 15, Stockholm 106 91, Sweden

a r t i c l e i n f o

Article history:Available online 8 April 2008

Keywords:SwedenTelehealthTechnologySurveillancePrivacyElderly care

* Corresponding author. Tel.: þ46 73 971 76 87.E-mail address: aes@fek.su.se

0277-9536/$ – see front matter � 2008 Elsevier Ltddoi:10.1016/j.socscimed.2008.03.005

a b s t r a c t

Scholars are increasingly questioning the notion that electronic surveillance merelyconstrains individuals’ liberty and privacy. However, illustrations of alternative perspec-tives are few and there is a need for empirical research exploring the actual experienceof surveilled subjects. This study, carried out in Sweden, seeks to offer a nuanced accountof how senior citizens experience electronic care surveillance in relation to their privacy. Itis based on in-depth interviews with 17 seniors who have participated in a telemonitoringproject and who have experience of being continuously activity monitored in their ownhomes. The findings suggest that senior citizens can perceive electronic care surveillanceas freeing and as protecting their privacy, as it enables them to continue living in theirown home rather than moving to a nursing home. One individual, however, experienceda privacy violation and the surveillance service was interrupted at her request. This illus-trates the importance of built-in possibilities for subjects to exit such services. In general,the study highlights that e-surveillance can be not only constraining but also enabling.Hence, it supports the view of the dual nature of surveillance. The study also illustratesthe agency of the surveilled subject, extending the argument that various agents actuallyparticipate in the construction of surveillance practices. It analyzes the indirect role andresponsibility of the surveilled subject, and thereby questions the traditional roles ascribedto the agents and targets of surveillance.

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Introduction

Academics have worried about the threats to privacyassociated with electronic surveillance (e-surveillance) fordecades (e.g. Davies, 1992; Flaherty, 1989; Floridi, 2006;Garson, 1988; Goodwin, 1991; Lyon, 2001, 2002; Lyon &Zureik, 1996; Mason, 1986; Ogura, 2006; Parenti, 2001;Solove, 2006; Weckert, 2001). However, as noted by a largenumber of scholars (e.g. Lyon, 2006, 2007; Haggerty, 2006;Haggerty & Ericson, 2000; Hier, 2003; Rossler, 2005;Solove, 2001; Vaz & Bruno, 2003; Wood, 2003), the extantsurveillance literature is overly dominated by the BigBrother (Orwell, 1949) and Panopticon metaphors

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(Bentham, 1969; Foucault, 1977), which inspire one-sidedand dystopic views on surveillance. To paraphrase Lianos(2003), contemporary e-surveillance studies routinely referto the erosion of privacy and liberties by sinister and total-itarian forces, which ‘‘is damaging as it is superficial andanalytically unfounded, and it pre-empts the feelings andopinions of the public, usually with great inaccuracy’’(Lianos, 2003: 414). Similarly, Haggerty and Ericson(2000) argue that ‘‘far from the negative connotationsthat tend to be attached to surveillance, many surveillancepractices today are not only supported but encouraged bythose who serve as the primary targets of data gatheringsystems’’ (pp. 401). Indeed, the widespread assumption inthe surveillance literature that subjects are surveilledagainst their will is now being questioned (Lyon, 2007;Pecora, 2002). Few studies have actually explored the

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experience of surveilled subjects (Haggerty, 2006; Lyon,2006). In general, the contemporary surveillance literaturetends to analyze surveillance technology in isolation, asgiven and as inevitably producing certain effects ina predictable fashion (Ball, 2002; Haggerty, 2006; Haggerty& Ericson 2000; Hier, 2003). It therefore fails to givebalanced accounts of how users interact with surveillancetechnologies in practice.

Recently, studies taking the locality and particularity ofe-surveillance applications and the agency of surveilledsubjects into account have however emerged (Dubbeld,2006; Fotel & Thomsen, 2004; Koskela, 2006). Drawing oninsights from the field of science and technology (e.g. Bijker,Hughes, & Pinch, 1989; Latour, 1987), these studies high-light that the operation of surveillance technology is byno means given, but rather contingent on the user-context.It is also argued that e-surveillance should not only beunderstood as constraining but also as enabling (Bogard,2006; Lyon, 2007). These insights have however not beenused to explore the relation between e-surveillance andprivacy. In general, this perspective is underdevelopedand more research is asked for, in particular as regards theview of the surveilled subject (e.g. Lyon, 2006, 2007).

Given these weaknesses in the surveillance literature,the present paper attempts to provide a nuanced accountof individual subjects’ experience of electronic caresurveillance in relation to their privacy. Care surveillancehas received little attention in the surveillance literature(Dubbeld, 2006; Lyon, 2001, 2006, 2007; Vaz & Bruno,2003; Wood, 2003). As noted by Vaz and Bruno (2003),this neglect may partly be due to the challenge relatedto studying e-care surveillance in a critical fashion.Surveillance and control are integral parts of care and itis difficult to separate these elements. Nevertheless, elec-tronic care surveillance technologies such as in-home tel-emonitoring are emerging and authors have underlinedthe pertinence of taking the issue of privacy into accountwhen evaluating such technologies (Bauer, 2002; Hensel,Demiris, & Courtney, 2006; Von Tigerstrom, 2000).Responding to these calls, the paper uses empirical datafrom the Swedish elderly care setting, exploring howcare takers perceive that being continuously activitymonitored in their own home affects their privacy. Asthis is a fairly unexplored area, the paper also asksmore broadly how we can understand e-surveillanceand privacy in this context.

The findings highlight that electronic care surveillancecan be perceived as enabling by surveilled subjects. Themajority of the seniors in this study feel that electroniccare surveillance can indirectly protect their privacy byenabling them to continue living in their own homes ratherthan moving to a nursing home. In general, care surveillancemakes the majority of the seniors interviewed feel cared forand safe rather than constrained. What makes them feel safeis however the fact that certain familiar care workers watchover them. The technology merely becomes a link betweenthemselves and the care workers. The study also highlightsthe importance of built-in possibilities for subjects to exitfrom the service. One individual experienced a privacyviolation and felt constrained when monitored. The surveil-lance service was interrupted at her request.

The article begins with a definition of privacy. Next,widespread assumptions in the surveillance literature areproblematized in relation to care surveillance and privacy.Alternative perspectives are outlined. Findings from thein-depth interviews with 17 seniors follow. The articleends with discussion, conclusions, implications and limita-tions, which suggest further research avenues.

Defining privacy

There has been a debate regarding whether or nota ‘‘right to privacy’’ exists and even if there is a unified con-cept of privacy (cf. Schoeman, 1984). Warren and Brandeis(1890) defined privacy as the right to be let alone. Thisdefinition has since been extended and includes variousmulti-dimensional conceptualizations (cf. e.g. Altman,1976; DeCew, 1997; Gavison, 1995; Inness, 1992; Westin,1967). Rossler (2005) recently provided a comprehensivedefinition, outlining three interrelated aspects of ‘‘theprivate sphere’’: (1) informational privacy (protectionagainst unwanted access to personal information aboutus); (2) decisional privacy (protection against unwantedinterference in our decisions); and (3) local (physical) pri-vacy (protection against the unwanted admission of otherpeople to personal spaces or areas).

Empirical studies of patients’ perception of privacyfocus on hospital or nursing home settings (e.g.Damschroder et al., 2007; Parrott, Burgoon, Burgoon, &LePoire, 1989). This literature suggests that hospitalpatients experience a loss of privacy when they cannotwithdraw or find a personal, private space, e.g. when theyhave to share room with other patients (Barron, 1990;Marini, 1999; Mattiasson & Hemberg, 1998; Woogara,2005). What also emerges from this literature is thatpatients experience privacy violations if they have towitness other patients’ problems (Sidenvall, Fjellstrom, &Ek, 1994). This aspect of privacy, which has been neglectedin the surveillance literature, is in this paper referred to asfreedom from observing and reacting to others.

What emerges from the privacy and care literature isthat patients primarily desire privacy in relation to otherpatients rather than in relation to care professionals. Itseems reasonable to assume that patients are relativelyinclined to willingly disclose personal, health-related infor-mation to care personnel if they believe that this is relevantfor the care services to be provided. I will return to thispoint below.

Care surveillance as a potential privacy harm

As noted above, much of the surveillance literaturebuilds on the concept of the Panopticon society (Bentham1969; Boyne 2000; Foucault, 1977), suggesting that e-surveillance can violate individuals’ privacy by intrudingon their informational and decisional privacy (e.g. Gandy,1993; Lyon & Zureik, 1996; Floridi, 2006; Michelfelder,2001; Nagel, 1998; Rossler, 2005; Solove, 2006; Udo,2001). It is argued that the harm of surveillance is that, ifunsure about whether one is watched or not, one mustconstantly present oneself as though one were beingobserved. The result is inhibition and self-censorship, i.e.

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a loss of autonomy in terms of the authenticity of one’sbehavior, which is turned into behavior ‘‘as if’’.

This view provides significant insights. However, ithighlights certain aspects of surveillance while ignoringothers. Importantly, studies bringing this view of surveil-lance to the fore build on certain presumptions. For one,elites with malign intentions to discipline and exert socialcontrol are the assumed agents of surveillance. Second,the intention to control is understood as an ambition toconstrain the behavior of the targets of surveillance. Third,the targets of surveillance are depicted as passive victims.And fourth, the surveillance technology itself is viewed asthe source of negative effects (cf. Bogard, 2006; Dubbeld,2006; Haggerty, 2006; Lyon, 2007). I will argue belowthat these four assumptions are not easily generalized tothe care surveillance setting.

What makes care surveillance a complex subject ofstudy is the intertwined relation between control andcare (Dubbeld, 2006; Lyon, 2006; Vaz & Bruno, 2003). Thework of Lianos (2003) can provide some clarificationhere. Lianos (2003) highlights that institutional control isintegral to specific surveillance activities, but that ‘‘It wouldbe reductive and unjustified to see such activities as relat-ing exclusively or principally to control’’. He gives an exam-ple: ‘‘One could look at a CCTV system which monitors thetraffic on a road network; is this dispositif about repressivesurveillance (traffic offences), detective surveillance (stolenvehicles).accident prevention or the improvement ofaccess times for emergency services.?’’ (pp. 415). Heanswers that the system is about everything at once. Thisis indeed applicable to the care surveillance setting. Theintention behind care surveillance includes but cannot bereduced to a malign ambition to control (cf. Lyon, 2007).In this respect, the general definitions of e-surveillancedo not quite capture the meaning of care surveillance.E-surveillance is often referred to as the systematic obser-vation and recording of acts of compliance and deviancein order to manage or influence behaviors by means ofinformation technology (Clarke, 1988; Lyon, 2001). Dictio-naries further define surveillance as: ‘‘to watch over; super-vision or superintendence; close observation of a person orgroup. especially one under suspicion e.g. a prisoner, orthe like (usually by the police)’’ (Dictionary.com, 2007).While the first definition says little about the intentionbehind surveillance, the latter highlights that surveillanceis associated with observation of ‘‘suspected’’ individualsand is understood as something that is done for the sakeof others rather than the surveilled.

Can we not watch over others because we care aboutthem, then? Of course, we can suggest this is so (cf. Lyon,2007). Consider the meaning of care: dictionary definitionsof care include ‘‘Watchful oversight; charge or supervision;to be concerned; have thought or regard; to make provisionor look out for someone in need.providing treatment foror attending to; have a special preference for; to have incli-nation, liking, fondness or affection for.’’ (Dictionary.com,2007). Major caring constructs in the nursing literature arecompassion, empathy, nurturance, succorance, comfort andsupport (Cloyes, 2002; Jecker & Self, 1991; Kreuter, 1957;Lavoie, De Koninck, & Blondeau, 2006; Leininger, 1977).Hence, care is, just like any type of surveillance, associated

with supervision and ‘‘watching over’’. However, carealso refers to the concern about and feelings directed toa person – a person in need. An act of care is generallythought of as performed ‘‘for one’s own sake’’, i.e. to main-tain or improve the surveilled subjects’ health or safety.Hence, in studies of care surveillance it is important to con-sider that care surveillance includes but cannot be reducedto an ambition to control. It can also incorporate an inten-tion to maintain or improve the patients’ health.

Let us return to Lianos (2003): he also maintains thatinstitutional control is often perceived as beneficial ‘‘andsometimes even liberating as much as constraining’’ (pp.415). Others have recognized the dual function of surveil-lance (Lyon, 1994, 2001, cf. Giddens, 1984). For example,Bogard (2006) refers to surveillance both as capture(fixing a flow, surveillance as determination) and as flight(releasing a flow, surveillance as resistance). Bogard(2006) argues that to surveil means to guard and hewrites: ‘‘guardianship is not a simple constraint, but anart of control that makes it safe for something to movefreely.’’ (Bogard, 2006: 98). From this view, surveillancepractices can in a sense be viewed as freeing. Drawing onthese arguments, this paper assumes that care surveil-lance can be perceived as both enabling and constrainingfrom the viewpoint of individuals.

Finally, the surveillance literature tends to discuss theeffects of surveillance technologies without consideringthat the consequences of a certain technology are by nomeans given (Ball, 2002; Dubbeld, 2006). The presentpaper assumes that while a certain technology facilitatescertain behaviors and impedes others, there are also oppor-tunities for people to choose how to use and not use thetechnology (Berg, 1997; Bijker et al. 1989; Latour, 1987;Oudshoorn & Pinch, 2003). This perspective makes clearthat users are not necessarily victims passively subjugatedto technological domination or disciplinary surveillance. Itallows for a consideration of the potential resistance fromusers (Ball, 2002, 2006; Dubbeld, 2006; Wood, 2003).

In summary, scholars have begun to suggest alternativesto the dystopic and deterministic principles traditionallyapplied in the surveillance literature. There are, however,no empirical studies illustrating how these principleswork in relation to privacy, in actual empirical settingsand from the perspective of the surveilled subject.

This paper seeks to address this gap in the literature byexploring individuals’ experience of being surveilled inrelation to their sense of privacy. Privacy here is definedas (1) the freedom to escape being observed or accessedwhen desired. This implies protection from unwantedaccess to personal information about us, i.e. informationalprivacy; unwanted interference in our decisions, i.e.decisional privacy; and unwanted admission of others topersonal spaces or areas, i.e. local/physical privacy (Rossler,2005). Privacy also refers to (2) the freedom to escapeobserving and reacting to others (Sidenvall, Fjellstrom, &Ek, 1994). The question of concern is: how do individualsexperience care surveillance as enabling and/or constrain-ing in relation to their privacy? The premise is thata surveillance technology needs to be understood inrelation to how it is used and not used in the actual context,i.e. how the care surveillance practice is constructed. The

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surveilled subjects are viewed as participating in thisconstruction.

Method

The purpose of this paper is to understand not only if,but also why seniors feel that electronic care surveillance(telemonitoring) does or does not violate their privacy.The paper further attempts to illicit not only expected,but also unexpected, privacy issues arising from theviewpoint of senior citizens. Hence, an open-ended,in-depth interview approach was deemed appropriate. Asnoted by McRobb and Rogerson (2004), quantitative instru-ments may be too blunt and may obscure more than theyreveal, as our understanding of consumers’ privacy concep-tions is as yet limited.

Research setting

In 2006, a public long-term care provider in the munic-ipality of Heby, Sweden, decided to introduce a new tele-monitoring service in their community. The new e-servicewas seen as a potential replacement to traditional manualalarms that were currently in use. The monitoring servicerequires that the user wear a monitoring device on thewrist. Sensors embedded in the monitoring device contin-uously collect ‘‘activity data’’ about the user. This data istransmitted to the care center. Care personnel can accessthe data, which is presented in graphical format as activitycurves on a computer screen. The activity curves provideinformation about the user’s sleeping patterns (e.g. howmany sleeping interruptions and sleeping periods per dayand night, how many times the user gets out of bed duringthe night), when the user leaves the house and takes off thewrist worn unit, among other things. The activity curvescan be analyzed over time in order to detect changing activ-ity patterns, which can indicate emerging health problems.During the first two days of use, the monitoring system reg-isters each user’s ‘‘normal’’ activity pattern. Thereafter, au-tomatic alarms are generated when the sensors detect thatthe user’s activity diverges from her/his normal pattern, e.g.in cases where the activity level is unusually low due to thesenior having fallen and turned unconscious. Users can alsoactivate alarms manually by pushing a button on thedevice, just like with ‘‘traditional’’ pendant safety alarms.The alarms are also transmitted to the care center. TheHeby managers decided to provide the new service to 20seniors, as a first step, before expanding the use of thenew monitoring technology. Two social workers recruited20 seniors who were (1) living alone in their own home;(2) vulnerable and exposed to health risks in their homeand therefore provided with manual safety alarms; and(3) capable of being interviewed. Three of the seniors couldnot use the devices due to allergies, etc. The seniors wereinformed about the monitoring service via letters andwere given the opportunity to ask further questions in fol-low up telephone calls. They were told that that their activ-ity level would be monitored, that automatic alarms couldbe triggered if there would be a radical change in activitylevel and that this was performed to ensure their safety.

It’s worth noting that the personnel did not see any rad-ical health problems on basis of the surveillance data duringthe study period, but rather that the seniors were sometimesnot wearing their alarms and that they were not sleepingwell. The personnel were ‘‘discrete’’ when acting on thiskind of information. They did not say ‘‘we have seen onthe data that you did not sleep well’’ for example. They triedto embed questions and reminders, e.g. about to wearalarms in their regular conversations with the seniors.

Data generation

This study is based on in-depth interviews with 17 of theseniors (68–96 years old, 9 female and 8 male) who acceptedthe use of the monitoring service. This purposeful samplingstrategy can be called extreme case sampling, i.e. selectingcases that are information rich because they are special insome way (Alvesson & Skoldberg, 1994). At the time of theinterviews (September 2006), the 17 seniors had been mon-itored for 6–7 months. The seniors were somewhat familiarwith the interviewer (author) who had visited all the seniorsto perform interviews once before, and who had chattedwith the seniors at least twice on the phone. The interviewslasted 90–120 min, were performed face-to-face and withinthe homes of the seniors. Interviews were very informal,unstructured, including open-ended questions in order toallow for unexpected issues to emerge (Patton, 2004). Theinterviewer (author) began by asking the seniors how theyexperienced the new monitoring alarms, discussing this ata general level for a while before bringing the issue ofprivacy explicitly to the fore. Interviews typically proceededwith a discussion about privacy and privacy threats. Othertopics were also covered, as this study is part of a largerresearch program. Interviews were recorded, transcribedand translated (Swedish to English) by the author. Noteswere taken on nonverbal cues, such as general appearance,anxiety, etc. (Patton, 2004).

Data analysis

The content analysis was performed in several steps.First, all transcripts and observational notes were readthrough to obtain a sense of the whole. Meaning units,a word, a sentence or a whole paragraph that answeredquestions of why and how the seniors perceived or didnot perceive privacy violations, were marked. As privacyperceptions are often covert and expressed ‘‘between thelines’’ (Bates, 1964), the author tried to be sensitive toobservational notes on nonverbal cues. The meaning unitswere condensed into a description of their manifest con-tent and an interpretation of their latent content. Themes,i.e. threads of meaning running through the descriptionsand interpretations (Baxter, 1991) were abstracted. Thetranscripts were thereafter compared with the aim ofdetecting patterns across participants (Moustakas, 1994).Next, the themes were compared and analyzed based onthe assumptions presented in the theoretical framework.Hence, a combined inductive and deductive approach wasused (Alvesson & Skoldberg, 1994). In order to improvethe credibility of the interpretation, the author presentedthe themes to peer scholars at research seminars

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(Leininger, 1994). The thematization as presented in thispaper is a result of an iterative process of culling the empir-ical data, modifying the sub-themes and refining thetheoretical framework. The themes are presented below,illuminated by extracts and quotations. The names arepseudonyms.

The Stockholm University Ethics committee gaveapproval to the study.

Empirical findings

The interviews suggested that the seniors had divergentexperiences of the new monitoring alarms. Two contrastingperspectives are presented below.

Care surveillance as enabling – feeling cared for

The majority of the seniors (16 out of 17) expressedpositive views about being surveilled. Interviews suggestthat these seniors believe that the monitoring serviceserves their own interest to get help in case of accidents.For example, Kurt says:

I think it’s great that they do this for us.they must bevery expensive, these new alarms.they told me itwould be safer than the old one [which does not includeany monitoring functionality].so I feel safe. It must besafer; it is newer so it should be better, more reliable.And I mean, in this way they can keep a track of meeven when they are not here, which is good becauseI’m alone here in my house.

Further, Sonja maintains that:

It is good that they know, it is good thing to besurveilled! I mean the more they know, the betterthey can understand my problems .I really trustthem, the girls. Very reliable girls.You know, they arelike my friends.of course I want them to see if some-thing is wrong, I might not be able to press the buttonand if I am lying on the floor dying .

And Ingrid states that ‘‘.It is a safety thing. you neverknow when you will fall. When you least expect it.’’

When asked what he would say if his GP would want toaccess the information, Bror says:

Of course he could do that!.I only see him when some-thing is VERY wrong.and that is not very often so hedoes not keep much track of me.I’m glad if he takesthe time to think about my condition! But I have to con-fess that I am also glad if I don’t have to go to the doctor.

These seniors clearly want care personnel to know asmuch as possible about them and they appreciate thatthe care providers are interested in gathering data aboutthem; they see it as a privilege. The seniors also appreciateit if the care personnel exert influence on their behavior orintervene, on basis of the surveillance data. For exampleLilly explains:

they can see if I wear the new alarm, and that’s good,because I tended to forget to wear the old alarm. Theyremind me if they see that I’m not wearing the new

alarm. They do it in a nice way of course. Now I alwaysuse the alarm, and that’s good. .And my childrenthink its great.

The seniors also believed that being surveilled contrib-utes (in combination with other home-help services) tothem being able to stay safely in their own homes insteadof moving to nursing homes. Henning maintains that:

Sometimes I can feel a bit lonely here living alone. Ithink, what if something would happen to me? I mean,no one knows what’s going on here. I think they havebought these things [surveillance devices] for thisreason, they cannot call me every minute, but I guessthey can get some information now.and of coursethat’s important if I am to remain here in my own house[as opposed to being moved to a nursing home]. I reallyhope I can live here until I die.so that’s good because itsnice if someone else knows if I’m OK or not OK. Of course,my kids call me now and then, but they may not be luckyenough to call at the right time so to speak

Further, Ulf says: ‘‘I think we need more things like this,like this new thing, so that they can keep an eye on us athome rather than moving us to nursing homes.’’. Privacyconcerns make many of the seniors reluctant to move toa nursing home. They mention two aspects of privacy inthis context. First, they express a desire for freedom toescape being observed and intruded on by others:

It is important that you can go home, leave others whenyou feel tired.and I like to do just whatever I feel like.without anyone looking at me. here [in my own home]I can walk around in my two day old socks sometimes, ifthey are not dirty.I try to not wash too often. (Elov).If I would move to a nursing home they would see mewalking up during the night. .I wouldn’t want tomeet anyone when I get up during the night when Icannot sleep. Maybe they would force me to takesleeping pills then! (Anna).

Second, the seniors underline the importance of privacyin terms of being able to escape observing and being closeto others. In other words, the seniors are not onlyconcerned about others watching them, but also aboutthemselves being forced to watch others, illustrated bythe following quotes:

I don’t want company by those I don’t know.I wouldn’tlike to sit with other oldies when I eat.I don’t want tosee them eat with trembling hands.listen to theirmemories.it would make me feel older I think(Lennart).Last time I was hospitalized it really struck me that thereis nothing worse than being forced to watch people thatcannot manage themselves. And I had to sit next tosome of them who had really bad breaths due to heavymedication I believe.[.] .and I like the peace andquiet in my own home.being by myself is not toobad. I like being by myself too, you see.even if it islonely (Bror).I don’t want to sit and stare at others sitting in theirchairs like me.meeting people in the mornings in thecorridor.hearing them speaking on the phone with

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their children.seems crowded.It’s easier to spend thedays here, where I know what to do. Thanks to my dailyroutines the days pass rather quickly. (Bo).

The seniors consider surveillance to be a service that canhelp them avoid moving to a nursing home and therebyescape such intrusions.

The seniors who viewed surveillance as a positiveservice did not mention any feelings of ‘‘being watched’’or feeling intruded on due to the monitoring services spon-taneously. When asked specifically if they have ever feltuncomfortable by being monitored, they clearly rejectedthis idea. They seem surprised at this question. For exam-ple, Bror says: ‘‘.I never think about it!.I really don’t.Ihardly feel it. I never take it off.’’ Other seniors expressedsimilar views, illustrated by the following quotes: ‘‘. [gig-gles]. I never think about it!!! .Actually never.’’ (Jim);‘‘.No, I haven’t thought about it at all. I don’t go aroundreflecting on what the alarm does.it feels very natural forme to wear it.[.] who cares if they see when I get up inthe night and go to the toilet.they’ve seen me naked.’’(Elov). ‘‘.On the contrary, no! I feel safer now.’’ (Sonja).

These seniors understand that information about themis collected and transferred to the care providers. Theyalso know that care providers can see if they are wearingthe alarm or not and that automatic alarms can betriggered. But none of them completely understand whatthe sensors monitor, or how the technology analyzes thisinformation. They believe they have received sufficientinformation, however. Consider Lilly for example. She wasobviously not very knowledgeable about the data collectedabout her. I started explaining a bit more in detail how thenew technology operates to her. She seemed very uninter-ested, even uncomfortable, and says: ‘‘That I do not under-stand.’’. When I ask Lilly if she wishes she had receivedmore information about how the technology works, shesays no: ‘‘Oh I think I’ve been sufficiently informed. I don’tneed to know everything about that apparatus .that’s theirjob, the girls.and I trust them so.’’. This is typical. Indeed,the seniors trust the care providers and are happy to dele-gate the task of understanding the new technology to them.It is however important to note that while the seniors knowlittle about the workings of the technology, they do not feelthat they have no control over the service. The seniors donot feel that the alarms are forced upon them, or thatthey have no possibility to exit this service. On the contrary,they feel that they can interrupt the monitoring service atany time, as illustrated by the following quotes:

I believe I can get my old alarm back any time, sure. I’djust tell them if that was the case. (Bror).You bet I could let them have this new alarm back.Ithink it’s much more expensive than the old alarm.And it’s modern technology. So I wouldn’t trade itagainst the old alarm! (Linnea).

Care surveillance as constraining – feelingas if under suspicion

One of the interviewed seniors, Siv, experienced a pri-vacy violation. Siv claimed her personal space right from

the start. She agreed to meet me when I called her tobook an interview, but with a reluctant tone of voice.When I arrive, she opens the door with her dog Toy inher arms. ‘‘You better not touch me, Toy might get madthen’’, she says and smiles nervously. Siv is anxious, andsuffers from an apparent lack of self-esteem. She worriesabout her health a lot. She is frank about this: ‘‘I ama very anxious person.always have been.I worry abouteverything.anything.the smallest things.’’. Siv says –before I have asked – that she wishes to get her old alarmback. ‘‘I don’t like it, the new alarm. I don’t like beingsurveilled. I want my old alarm back.[.].it doesn’t matterwho looks at the information. The fact that someone can lookis enough.’’. Siv explains her dislike with feelings of beingobserved. She thinks that her sleeping pattern is sensitiveinformation. She says ‘‘I don’t want people to know when Itake a nap.when Toy [her dog] and I are lazy.that’s onlybetween him and I.they know enough about me. I want tospare them my strange habits.’’. It is also clear that beingmonitored influences Siv’s decisions: ‘‘It hits me, when Ilay down late in the mornings that this is monitored.also,at times when I can’t sleep and get up in the middle of thenight I sometimes think that this might be seen.which makesme reluctant to do so!’’

Siv cannot see that the monitoring service addsanything beyond the service she already receives. The com-munity care personnel deliver food to her at noon, andconduct a check up visit in the evenings. She says:

They check on me twice a day already, I think this isenough.I mean, it is different at a hospital, but in myown home I don’t want people to watch me all thetime.It feels a bit strange, this idea, to monitor peoplein their own homes. Your home is your own place; theycan’t start turning it into a technicality. You have to letpeople alone in their own homes. No, that’s going too far.

During my visit, a home-helper came by to give Siv herold alarm back, which made her happy.

Discussion

This study explored senior care takers’ experience ofbeing e-surveilled in relation to their privacy. The majorityof the seniors in this study (16 out of 17) have a positiveexperience of being surveilled. This has to do with howthe care surveillance technology was used and not usedin the particular setting studied but also with the specificityof care surveillance. This paper initially argued that caresurveillance includes but cannot be reduced to an ambitionto control. It can also be understood as incorporating anintention to provide for individuals in need. This view ofsurveillance resonates with the view of e-surveillanceexpressed by the positive seniors in this study. Theseseniors are aware of their frailty and they feel that theyneed to be watched over in one way or another. Hence,these seniors do not experience any violation of their infor-mation privacy (Rossler, 2005) when monitored becausethey do not want to hide the information collected fromcare personnel. The seniors further appreciate that carepersonnel can acquire digital information about andinfluence their behavior. They view it as a benefit to be

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reminded to behave in certain ways as this can enhancetheir own safety. In other words, they do not perceivethat e-care surveillance intrudes on their decisional privacy(Rossler, 2005). Interviews make clear that the seniors dodesire to physically withdraw from care personnel. Theydo not however perceive any local/physical privacy(Rossler, 2005) invasion due to the monitoring service asthey feel that they are ‘‘let alone’’ (Warren & Brandeis,1890), even if they are electronically monitored. Indeed,the monitoring service can indirectly protect informational,decisional and local privacy from the viewpoint of theseseniors. It strengthens their possibilities to continue livingin their own homes rather than moving to nursing homes,where they expect significant threats to their privacy, bothin terms of a reduction in the freedom to escape beingobserved but also in terms of a declined freedom to escapebeing exposed to information about other care takers.These latter points highlight that surveillance can beliberating rather than constraining.

In general, these seniors’ reported experience of care sur-veillance involves the thought of ‘‘a friendly eye in the sky’’(Solove, 2001) rather than of a ‘‘Big Brother’’ watching(Orwell, 1949). It is however important to note that the con-ceived thought of ‘‘friendly eye’’ is not anonymous. The se-niors rather think of certain care workers, who deliverother services to them, as being ‘‘the watchers on the otherside’’. Being surveilled by the care personnel who they trustmakes the seniors feel safe. Indeed, it makes them feel morecared for. The seniors do not reflect much about the surveil-lance technology itself, it withdraws and merely becomesa link between themselves and the care workers. This sug-gests that the technological artifact is far from central in sur-veillance practices. What is important to consider is ratherhow the surveillance service is introduced to the subjectsin the actual setting. An important aspect in this contextwas the opportunity for seniors to exit the surveillance ser-vice. As we discussed above, one of the seniors used this pos-sibility and opted out of the service. This woman was moreconcerned about her public appearance than the othersand she had a lower threshold regarding the amount ofdata she was willing to disclose to the care personnel. Thepossibility that someone may look at the data collectedabout her, and the possibility that her data may not look‘‘normal’’ bothered this woman. Indeed, e-monitoring in-trudes on her informational privacy and it threatens her de-cisional privacy (Rossler, 2005) as the fact that she ismonitored influences – or at least crosses her mind whenmaking – decisions about how to behave. E-surveillance fur-ther invades on her local/physical privacy as she perceivedthe surveillance service as a physical intrusion in herhome. This woman was however not forced to continueand the monitoring was interrupted at her request. This il-lustrates that surveilled subjects can exert resistance.

Hence, the widespread assumption that malign inten-tions lie behind surveillance practices is not quite valid inthe care surveillance context. The care surveillance practicestudied here involves control but this is not perceived asconstraining by the majority of the surveilled seniors. Onthe contrary, the seniors appreciate the fact that the careproviders collect information about and intervene in theirhealth. They feel that someone else takes responsibility

for their well-being and this makes them feel free ratherthan constrained.

Conclusion

This study suggests that care surveillance practices canbe constructed in ways that make the surveilled subjectsfeel cared for and liberated. It thereby challenges the wide-spread deterministic view of e-surveillance as involving thedestruction of privacy and liberty by sinister forces (seefurther e.g. Dubbeld, 2006; Haggerty, 2006; Hier, Walby,& Greenberg, 2006). The majority of the seniors in thisstudy viewed care surveillance as a means to protect theirprivacy in terms of freedom to escape being observed andobserving others face-to-face, as they compare beinge-surveilled to moving to a nursing home. (cf. Rossler,2005; Lyon, 2001, 2002). Hence, the study illustrates thedual side of surveillance in relation to privacy, arguingthat surveillance is not necessarily constraining but canalso be enabling (Bogard, 2006; Lyon, 2001, 2006, 2007).It is however important to note that one senior in this studyperceived the care surveillance service as constraining. Theexperience of being surveilled is subjective and it should beexpected to vary across individuals. Of importance here isa built-in possibility for individuals to exert resistance.

One could argue that the care surveillance practice stud-ied here involves an element of seduction (see Bauman,1992; Hier, 2003; Rossler, 2005). The majority of the seniorsstudied here are indeed attracted by the rewards they asso-ciate with being surveilled (individualized care) and ratheruncritically accept the surveillance service. However, de-scribing the subjects as victims seduced and manipulatedby the care providers would be to oversimplify the situa-tion and would merely reproduce the view of the surveilledsubject as passive and subject to totalizing powers. We canlearn more by broadening the perspective and analyze thesurveilled’s indirect participation and responsibility for thedevelopment of surveillance practices of the kind studiedhere. As noted above, the seniors studied here wish toage in their own homes, rather than at institutions. Thisis partly because of their desire for privacy in terms offreedom to withdraw physically from others. In general,citizens’ wish to ‘‘age in place’’ due to the independenceand freedom this entails, has contributed to the emergenceof various in-home care surveillance technologies (e.g. Bar-low & Venables, 2004). These technologies also emerge asa result of the governmental desire to reduce costs of nurs-ing homes and the technology providers’ strive to makeprofit. Against this background, the care surveillancepractice studied here may be considered as predicated onand in the service of a certain type of liberty, namely thefreedom to age in one’s own home and manage everydaylife without being constantly intruded on. This suggeststhat surveillance can cultivate and protect certain types offreedom desired by care consumers in today’s society(Lyon, 2002; Rose, 1999 cf. Nock, 1993).

Limitations

The findings reported here concern elderly care, whichis a very specific setting. The senior citizens in this context

A. Essen / Social Science & Medicine 67 (2008) 128–136 135

are generally frail and aware of their need to be ‘‘checkedon’’ regularly. The rural Swedish community studied isfurther characterized by a low turnover of care personneland satisfied senior citizens. Also, the seniors in this studyare grateful for being provided with new, modern andexpensive monitoring alarms and participating in a devel-opment project. This may lead to overly positive attitudes.There is also the risk of the senior citizens seeking to pleasethe home-helpers and the interviewer by expressingpositive views. The author tried to reduce this risk by estab-lishing a relationship with the seniors and by creating anopen and informal atmosphere during interviews.

Research suggestions

This study challenges the argument that e-surveillance de-humanizes activities (e.g. Los, 2006; Ogura, 2006) by showingthat care surveillance can make individuals feel cared forrather than ‘‘reduced to digital data’’. In the case studied,e-surveillance complemented rather than substituted face-to-face visits. More research is warranted about how e-surveillance can be integrated with face-to-face services inorder to avoid de-humanizing practices.

While the enabling capacity of e-surveillance deservesmore attention in general, so does its constraining poten-tial. We need critical studies of surveillance practicesrooted in good intentions – at what point do they developinto unacceptable forms of control? This issue is relevantconsidering the development toward IT-based preventivehealth assessment in healthcare systems internationally.Rising wage costs and reducing costs of technology will cre-ate more instances of e-surveillance. Indeed, Armstrong’s(1995) argument that we are heading toward ‘‘surveillancemedicine’’ is highly pertinent. Further, this study high-lighted the agency of the surveilled individuals in termsof their possibility to exit surveillance services. The alterna-tives provided to such individuals warrant further research.Will their resistance imply that they are excluded fromcertain benefits?

This study further opens up avenues for researchproblematizing the border between the targets and agentsof e-surveillance. As noted by Lyon (2007), people todayincreasingly desire public services that require surveillance.We need to study at multiple levels who initiates e-surveil-lance practices?

Finally, this paper highlights that privacy does not onlyrefer to the possibility to limit what others know about us.Privacy also refers to the possibility to limit what informa-tion we are exposed to. Further research about how thisprivacy aspect, concerning the information flow from theexternal environment to us, operates is relevant consider-ing the vast amount of health information and advice thatis transferred to consumers in today’s society.

Acknowledgements

I want to acknowledge the support and constructiveadvice provided by three anonymous reviewers and theEditorial team of Social Science & Medicine. I also owethanks to Ali Yakhlef, Torkild Thanem and SolveigWikstrom at the Department of Business Administration,

Stockholm University, for critical but useful comments onhow to improve the paper.

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