T
he thesis consequently shows
that both the ideology and
actual use of ST by caregivers
and clients are highly ambivalent,
showing the need for sound
normative evaluation at a much
earlier (design) stage.
ALISTAIR NIEMEIJER (1980) STUDIED
PHILOSOPHY AT VU UNIVERSITY IN
AMSTERDAM AND APPLIED ETHICS AT
UTRECHT UNIVERSITY. HE CONDUCTED HIS
PHD RESEARCH AT THE VU UNIVERSITY
MEDICAL CENTER AND CURRENTLY WORKS
AS A LECTURER AT THE UNIVERSITY OF
HUMANISTIC STUDIES IN UTRECHT.
ISBN 978 90 8659 696 6
SURVEILLING AUTONOMY, SECURING CARE ALISTAIR NIEMEIJER
S
urveillance technologies (ST)
such as video surveillance,
GPS tags and movement
sensors are increasingly being used
in residential care for vulnerable
people, even though they raise
various concerns. What does morally
good care with ST entail? This
thesis tries to answer this question
by exploring actual practices of ST
using several empirical methods,
instead of departing from specific
theories of good care.
VU University Press
SURVEILLING AUTONOMY,
SECURING CARE
EXPLORING GOOD CARE WITH SURVEILLANCE TECHNOLOGY
IN RESIDENTIAL CARE FOR VULNERABLE PEOPLE
9 789086 596966 >
VU UNIVERSITY PRESS
WWW.VUUNIVERSITYPRESS.COM
ALISTAIR NIEMEIJER
VRIJE UNIVERSITEIT
Exploring good care
with surveillance technology
in residential care for
vulnerable people
ACADEMISCH PROEFSCHRIFT
ter verkrijging van de graad Doctor aan
de Vrije Universiteit Amsterdam,
op gezag van de rector magnificus
prof.dr. F.A. van der Duyn Schouten,
in het openbaar te verdedigen
ten overstaan van de promotiecommissie
van de Faculteit der Geneeskunde
op woensdag 28 januari 2015 om 15.45 uur
in de aula van de universiteit,
De Boelelaan 1105
door
Alistair Roelf Niemeijer
geboren te Hoorn
promotor:
copromotoren:
prof.dr. C.M.P.M. Hertogh
dr. M.F.I.A. Depla
mr.dr. B.J.M. Frederiks
Surveilling autonomy, securing care
Exploring good care
with surveillance technology
in residential care for
vulnerable people
Alistair Niemeijer
VU University Press, Amsterdam
The studies presented in this thesis were supported
by grants from the following institutions:
ActiZ
Dioraphte
Innovatiefonds Zorgverzekeraars
NutsOhra
Stichting Regionale Zorgverlening Zeeland
‘S Heerenloo, Vereniging Gehandicaptenzorg
Nederland, Vereniging ‘Het Zonnehuis’
The studies presented in this thesis were performed at
the Institute for Health and Care Research (EMGO Institute)
and the Department of General Practice and Elderly Care
Medicine of the VU University Medical Center in Amsterdam.
EMGO+ participates in the Netherlands School of Primary
Care Research (CaRe), which has been acknowledged by the
Royal Dutch Academy of Science (KNAW).
VU University Press
De Boelelaan 1105
1081 HV Amsterdam
The Netherlands
www.vuuniversitypress.com
[email protected]
© 2015 A.R. Niemeijer
Cover illustration: Arend van Dam
Design cover: Haags Blauw, Den Haag (Bianca Wesseling)
ISBN 978 90 8659 696 6
NUR 870
All rights reserved. No part of this book may be reproduced,
stored in a retrieval system, or transmitted, in any form or by
any means, electronic, mechanical, photocopying, recording,
or otherwise, without the prior written consent of the publisher.
Contents
1.
General introduction
9
2.
Ethical and practical concerns of surveillance technologies
in residential care for people with dementia or intellectual
disabilities: an overview of the literature.
29
The ideal application of surveillance technology in residential
care for people with dementia.
57
The place of surveillance technology in residential care for
people with intellectual disabilities: is there an ideal model
of application.
73
Exploring benefits and drawbacks of surveillance technology:
an ethnographic field study of the practice of nurses and
support staff in residential care for people with dementia or
intellectual disabilities
91
Autonomy under surveillance. The experiences of people with
dementia and intellectual disabilities with surveillance
technologies in residential care
113
Responsible application of surveillance technology in
residential care for people with dementia or intellectual
disabilities: a guideline for residential care settings
(English summary).
137
General discussion
163
3.
4.
5.
6.
7.
8.
Samenvatting
Summary
Dankwoord
About the author
207
213
219
225
1
Chapter
GENERAL INTRODUCTION
BACKGROUND
Overview
This thesis is about two vulnerable populations in Dutch long term residential care, people with dementia
and people with intellectual disabilities, and the application of surveillance technology in this setting. Both
populations are included in this study because they both require permanent, comprehensive personal care,
face different but also corresponding difficulties, and because their rights are subject to the same laws.
Moreover, the comparable ethical questions that arise with the application of surveillance technology in
both populations lead to dilemmas to which the dominant, on nonintervention and autonomy based law
and ethics, provide a limited answer.
Changes in long term residential care needs
A
s Western societies such as The Netherlands are increasingly aging, the number of vulnerable
people with intensive care needs requiring residential care will continue to rise. For instance, the
total number of people with dementia is expected to double every twenty years (WHO, 2012). The
large majority of people with dementia in The Netherlands live and are cared for in the community.
However, in the advanced stages of the disease, 90% of people with dementia aged 65 or older are admitted
into a nursing home and eventually die there (Houttekier et al., 2010). Demographic trends also point
towards a growing group of people with intellectual disabilities (ID) in need of (long term) residential care.
This is in part owing to an increase in life expectancy and a concomitant risk of developing additional
ailments, but also due to ageing family carers of people with ID still living at home (Boyle et al., 2011;
Emerson and Hatton, 2011; Ras et al., 2010). With the numbers of both family and formal caregivers
concurrently decreasing, it has been predicted that these trends will ultimately lead to a serious care vacuum
(Agree et al., 2005; Alisky, 2006).
With Dutch public expenditure on long term care projected to be the one of the highest of the EU countries
by 2040 (Mot and Biro, 2012), The Netherlands also faces the hefty challenge of providing high quality
health and long-term care services to an ageing population in a cost-efficient manner (Schut et al., 2013).
Consequently, there have already been several changes in the way care is organized in The Netherlands,
most significantly leading to changes in legislation and austerity cuts, thereby reducing the availability (of
public funding) of long term care services (Grootegoed and van Dijk, 2012).
Crucial to these demographic and service pressures has been the advancement of technological solutions to
aid and assist living, making it possible for vulnerable people such as people with dementia and ID to remain
at home (longer), thereby postponing admission to residential care. Residential or intramural care for people
with dementia or ID often involves costly, structured 24-hour care services by trained (multidisciplinary)
staff within a residential facility. It is a permanent form of care, which is interwoven with daily life. Here the
emphasis does not lie on direct (acute) recovery, but on supporting and attending to the needs and
(remaining) capabilities of the client.
Traditionally, residential care settings have been low-tech environments with limited resources compared to
acute care settings (Gloth, 2011). However, more and more long term residential care settings are also
investing in the promise of technology, as residential care has seen a recent upsurge of technological
interventions. Accordingly, in 2009, the Dutch Health Care Inspectorate estimated that as much as 91% of
long term residential care settings in The Netherlands were now using some form of assisted living
technology (Dutch Health Care Inspectorate, 2009).
The rise and development of assisted living technologies
Assisted living technologies (ALTs), also known under the less familiar name of assistive domotics, are
essentially a form of home automation and refer as an umbrella term to the technological devices and
(communication) systems which, when combined, help provide care, but might also improve the quality of
life of the care recipient (Lewin et al., 2010). ALTs might also be used for specific purposes such as health
monitoring (e.g. heart monitor), collecting health data or (health) support in social contact (e.g. webcams),
although this is not particularly an aspect of home automation and as such these forms of technologies are
more commonly referred to as e-health and telemedicine.
In less than a decade ALTs have moved from being a fringe interest of a few enthusiasts – principally from
within the dementia care community – to mainstream provision in several areas including long term
residential care (Woolham et al., 2011). ALTs emerged at least in part from social alarm technologies first
used in the UK within local authority sheltered housing as far back as the 1960s and 70s (Fisk, 2003). First
generation of ALTs were simple systems and tools in the form of personal alarm systems and emergency
response telephones that did not have to be integrated into a smart home system (Celler, 1999; Van Hoof
and Wouters, 2012). Second generation ALTs evolved from personal alarm systems to video communication
and surveillance. Nowadays ALTs might comprise of complex embedded and wireless ‘ambient’ systems or
‘smart homes’ (Van Hoof and Wouters, 2012), as ALTs entail both (human) controlled processes and
automated processes. It was, however, not until the late nineties that a rapid growth in interest developed
in ALTs for people with dementia and ID, owing partly to demographic, financial and service pressures,
but also due to technological progress and person centred approaches (Agree et al., 2005; Woolham et al.,
2011).
Within long term residential care for people with dementia or ID the application of ALTs often serves two
purposes: it can offer assistance and support in the daily life (activities) of clients and it can be used to
monitor and safeguard residents from (self-inflicted) harm, often caused by wandering and excessive
locomotion (Hope et al., 1994; Robinson et al., 2007). The first category of ALTs are assistive technologies
that think along with the client, such as automatic light or heating when someone enters a room, domestic
appliances which switch themselves off at a certain point or a path of automatic nightlights installed between
the bedroom and the toilet. Surveillance technology, the second category of ALTs used in residential care,
allows for visual and auditory monitoring and registration of events including clients’ activities, and includes
tagging and tracking technology, sensors and audio and video surveillance. As stated in the overview, the
research of this thesis is specifically focused on the application of this second category of ALTs, i.e.
surveillance technology, which will now further be explored below.
The application of surveillance technology in residential care
As (permanent) supervision and 24 hour care is integral to long term residential care, surveillance technology
(ST) takes up an increasingly prominent role. As a potential, cost-effective, solution to understaffing, ST
might aide and enhance human supervision (Lauriks et al., 2008) and at the same time increase the freedom
and autonomy of the client, as it can serve as a secure alternative to the more traditional severe forms of
freedom restriction (Zwijsen et al., 2012; Te Boekhorst et al., 2013). Several forms of ST have already been
specifically designed and tested for people with dementia or intellectual disabilities (Te Boekhorst et al.,
2013), which may include: tagging technology such as electronic bracelets that help (wandering) clients
access areas within (predetermined) secure parameters, with automatic doors responding to these bracelets.
Or GPS tracking systems, which might involve a chip sewn into someone’s clothing, in order to assess the
(wandering) client’s whereabouts. Clients need not always wear ST on them, as several ST devices are
already, and not always visibly, embedded in the fabric of the building. This could include video and audio
surveillance (e.g. a small fixed camera or a so-called ‘listening in’ system), movement (e.g. fall) sensors or
sound detection, emitting an alarm to the caregiver. During the day ST is most often used in an ambulatory
manner, with a caregiver on location carrying a portable DECT (Digital Enhanced Cordless
Telecommunications) phone, which responds to the sensors or detection and also allows for acoustic
monitoring of a client’s private room and communication between caregivers. During the night ST is also
used from a central point where all the incoming signals are processed by dispatchers and night care workers
on, or nearby, the location are consequently notified.
The distinction in ALTs between assistive and surveillance can sometimes be ambiguous, as ST devices
which protect and monitor the client, are also aimed at supporting or enabling the client. For example, when
ST is used as an alternative means to effectively manage wandering. People who are cognitively or
intellectually impaired are prone to wander unexpectedly and as such not only put themselves at risk but
also pose a hefty challenge to caregivers and healthcare professionals, ultimately increasing their caregiver
burden. As a result, wanderers will often be kept behind locked doors, effectively restricting them in their
freedom of movement with the risk of adverse effects (Hughes and Louw, 2002). Even though there is
growing awareness that using physical restraints such as bed rails, bed straps, chair belts and locked doors
has serious psychological and physical disadvantages (Evans et al., 2002; Zwijsen, 2012), these restraints are
still prevalent in residential care (Karlsson et al., 2001; Hamers and Huizing, 2005; Halfens et al., 2010).
Governments and care practitioners in many countries are now developing policies to diminish the use of
restraints and promote viable alternatives (Romijn and Frederiks, 2012). The Health Care Inspectorate in
the Netherlands has consequently promoted the use of ST as a way to diminish the use of more severe
means of restricting freedom. This has led to more and more care providers employing ST (also) as an
alternative to classic forms of restraint, which is generally seen as a positive development: ST are viewed as
something which will increase the freedom of movement of clients, without compromising their safety
(Dutch Health Care Inspectorate, 2008, 2009, 2010).
In sum, ALTs and in particular ST has great promise in residential care, as it might prove a cost effective
answer to understaffing by aiding, enhancing or taking the place of human supervision, and thus potentially
alleviate the work load and care burden of primary caregivers. On the other hand, ST might be used as a
means of enhancing the quality of life for people with dementia or ID, either by employing it as an alternative
to classic forms of restraint or by supporting and retaining autonomy. These many potential uses of ST,
which are continually evolving, have made it a popular choice for many long term residential care settings
in The Netherlands to invest in. However, it is unknown what the implications of this use might be and
whether ST actually fulfills its promises in practice. What is more, the application of ST also gives rise to
ethical and practical concerns, as will be discussed below.
GOOD CARE WITH ST: LACK OF NORMATIVE FRAMEWORK
Differences in care
As promising as surveillance technology (ST) might be for long term residential care, the use of ST often
conjures pessimistic Orwellian notions such as ‘Big Brother’s watchful eye’ or ‘a machine of repressive
control’ (Welsh et al., 2003; Astell, 2006). Whether these pessimistic notions are legitimate or not,
introducing ST into long term care settings will create obvious differences in the way care is organized
(Zwijsen et al., 2012). Working with ST might change the daily care routine of nursing and support staff, as
they have to respond to alarms and take up a more monitoring role. This requires a different set of skills
and might lead to an undervaluing of other skills that staff have to have in order to provide the complex
care that is often needed for people with dementia or ID. A more monitoring role might also lead to less
frequent contact moments, as (continuous) physical presence is no longer always a requirement. In certain
instances ST might even replace personal care all together, which is all the more relevant when caring for a
vulnerable group of clients for whom personal contact is viewed as indispensable. Without a carer nearby,
especially during the night, clients might feel less safe and alone. On the other hand, clients might appreciate
a continuous attentive gaze or a watchful eye in the background. ST might also intensify (personal) care, as
ST takes over certain care duties, potentially freeing up time for more personal contact. Despite the
considerable amount of research of perspectives on new technologies for vulnerable people in community
care (e.g. Courtney et al., 2008; Topo, 2009; Landau et al., 2010), we still know little about how ST affects
care and the care relation within a residential setting for vulnerable people.
Surveillance, liberty and privacy
A certain degree of surveillance, be it not through ST, has always been a part of (long term) health care, and
nursing care in particular, with the layout and design of facilities optimized to allow easy observation of
residents and patients (Salzmann-Erikson and Eriksson, 2012), depending for its effectiveness upon
observation, assessment, diagnosis, classification, and reporting, i.e. the so-called ‘clinical gaze’ (Johnson,
2005). However, ST has different purposes which are not so much clinical or diagnostic, although it could
in some instances be used as such, but rather about a less labor intensive mode of keeping the client secure
from a distance (Mortenson et al., 2013), whilst providing him or her a certain degree of physical space. But
the aforementioned ambiguous distinction between technologies that assist and surveil does show that the
purposes of ST are unclear: technology which might support or enable the client, could in fact also be
perceived as being invasive of liberty. Even though ST appears to be a more desirable alternative to (other)
physical restraints, this does not mean that ST might not be considered as a form of restraint in and of itself.
For instance, certain ST needs to be worn on the body, such as an electronic bracelet. ST can also restrict
freedom of movement: an electronic barrier still remains a barrier, which is not to be crossed, eliciting a
response from attending staff. Being constantly confronted with a caregiver every time a client crosses a
barrier could make the client feel restricted.
Alluding to ‘Big Brother’ when discussing ST is not entirely precipitous, as technologies that (continuously)
monitor or surveil people, are perceived to be inherently intrusive, and invasive of privacy. One of the
earliest legal definitions of privacy was famously given by Warren and Brandeis as ‘the right to be left alone’
(Warren and Brandeis, 1889). Meanings attached to privacy vary widely nowadays, as it is a notoriously
difficult concept to define. Generally, it is seen as having bodily, spacial, decisional and informational aspects
(Johnson, 2005). ST has the potential to be intrusive of all these aspects, although it is particularly the first
two aspects that appear to be most at risk with regard to ST in residential care. What is more, residential
care is characterized by being a place where there is already limited opportunity for privacy of space and
body, with few ‘zones of intimacy’ left (Hauge and Hegge, 2008). On the other hand, one can wonder
whether ‘being alone with no intrusion’ is actually that important for people with serious cognitive or
intellectual impairment who’s living experiences, intentions, purposes and meanings differ from those not
in need of constant care. Values such as intimacy and feelings of security might be more important than
being left alone without intrusion, i.e. respect for ‘privacy’.
Ethical debate in the UK
Certain ST, such as tagging and tracking technology, are considered as being stigmatizing (O’Neill, 2003).
This is due to the association with other types of tagging and tracking technology often used for animals
and criminals. The UK's Alzheimer's society also points this out when stating that "technology, which is
often used to 'secure' animals, retail products and prisoners, should not automatically be transferred to
people with dementia without full consideration of the ethical issues" (Alzheimer’s Society, 2013). It is in
fact this form of technology which sparked off an ethical discussion in the British Medical Journal (BMJ)
amongst British dementia care professionals in 2003. Tagging and tracking technology was on the one hand
viewed as an infringement of human rights and contrary to human dignity (Cahill, 2003; O’Neill, 2003),
whereas on the other hand it was seen as something which might actually increase liberty and dignity,
compared with a policy of incarceration (Bail, 2003; McShane, 2003). Amongst the instigators of the original
ethical debate were physicians Julian Hughes and Stephen Louw, who in their BMJ editorial aimed to draw
attention to the want of debate surrounding the application of new technologies. They questioned whether
the practical benefits such as more security and potential ease to caregivers should outweigh the ethical
considerations and civil liberties of people with dementia (Hughes and Louw, 2002). This discussion is still
going strong today, as the BMJ published a head to head article recently showing opposing views, titled:
‘Should patients with dementia who wander be electronically tagged?’ (McShane, 2013; O’Neill, 2013).
Lack of normative framework in The Netherlands
Contrary to the UK, the Netherlands has seen little ethical discussion or scrutiny surrounding the
implementation of (any form of) ST in residential care, as it has generally been greeted with much optimism.
What is more, there is a lack of any kind of normative framework that care providers can recourse to with
regard to the application of ST. Current Dutch laws do not give any direction. For instance, it is yet unclear
whether ST might be viewed as a restrictive measure. The Psychiatric Hospitals (Compulsory Admissions)
Act (Wet bijzondere opnemingen in psychiatrische ziekenhuizen, BOPZ), which specifies clients' rights in
case of compulsory admission and with regard to the use of physical restraints, does not mention anything
about ST or technological forms of restraint. Moreover, a report in 2008 by the Dutch Health Care
Inspectorate indicated that there was insufficient knowledge and awareness amongst caregivers: they did
not know which measures were restrictive and which were not, and what the risks and consequences were
of the application of restraints. Even though a successive report in 2010 showed improvement, this appeared
not to be the case with regard to the increasingly complex role of ST. It was concluded that any careful
consideration on improving the quality of care on the one hand and restricting the right to liberty and privacy
on the other, was rarely present within a care setting (Dutch Health Inspectorate, 2009).
Interestingly, a new element in the forthcoming law on the use of restraints ‘Zorg en dwang’ (Care and
coercion) (Kamerstukken 31996), is that (monitoring forms of) technology will now be designated as a form
of involuntary care (i.e. a restraint) if the client or proxy does not consent to, or the client resists its
application. This is already the case in another European country, namely Austria, where the law designates
all ST as a form of restraint, but again only if the client or proxy does not consent to or resists its application
(Heimaufg, 2011). However, the forthcoming law does not give any (further) normative guidance, as it still
remains unclear how to adequately balance the client’s safekeeping from a distance versus respecting a
client’s right to liberty and dignity. Nor does it state any answers to (other) problems that might arise during
the application of ST, such as how quickly a carer should respond to an alarm, which alarm to choose from
when several go off at the same time, what to do with faulty equipment or false alarms and how (often) ST
measures should be evaluated.
And even the question of establishing ST as a form of restraint is far from straightforward, as people with
dementia or (serious) ID are not always capable of communicating their needs. They often have a diminished
capacity to make decisions and are more prone to acquiesce to imposed care measures such as ST (Heal and
Sigelman, 1995; Finlay and Lyons, 2002), making it all the more difficult to adequately assess whether clients
are assenting to or resisting a potential ST measure. It is in fact the diminished decisional capacity of people
with dementia or ID, which also problematizes the (ethical) principle of autonomy, since autonomy is
commonly linked with rational agency and/or decisional capabilities and presupposes ‘persons as
independent, self-sufficient centers of decision making’ (Agich, 2003: p. 29). According to George Agich,
any conception of autonomy should ultimately be sensitive to the complex living conditions that actually
support the unique identity of those individuals needing long-term care (Agich, 2003). As might be the case
with (respect for) privacy, other values such as connection or intimacy may be more important for a person
with dementia or ID than independence and non-interference, as enabled by ST. For this reason,
understanding and researching the perspectives and experiences of people with dementia or ID with ST is
essential, in order to find out not only how ST impacts on both the safety and independence of vulnerable
individuals, but also on their feelings of wellbeing and sense of self (cf. Robinson et al., 2007).
In view of the above described developments, it can be deduced that as of yet it is unclear how to provide
good care with ST in long term residential care for vulnerable adults. Although there are potential benefits
of ST application in residential care, there could also be drawbacks, as ST creates differences in the way care
is organized and can give rise to an array of moral and practical problems -of which only a few have been
briefly touched upon here- and which are further complicated by the inherent intricacies of caring for
vulnerable people with cognitive disabilities, such as people with dementia or ID. With current legislation
and guidelines sorely lacking, service providers have to find their way tentatively when applying ST in a
responsible manner, signifying a need for a clear normative positioning of the application of ST in residential
care for vulnerable people in such a way that it does justice to notions of good care.
OBJECTIVES AND RESEARCH QUESTION
The aims of this thesis were twofold: to give an empirical-ethical analysis of the application of ST in light
of what can be described as a paradigm of good care, and to present recommendations for practice, policy
and future research. Rather than depart from a specific notion of good care, this explorative research aims
to find out how good care with ST is viewed by care professionals and ethicists, and how ST is experienced
within a specific practice of care, by using multiple empirical methods. Through theoretical and ethical
reflection on the retrieved empirical data, this thesis aims to formulate how good care with ST might
consequently be envisioned.
Accordingly the central research question of this thesis is: What does good care with ST in residential
care for people with dementia and intellectual disabilities entail?
RESEARCH DESIGN AND METHODOLOGY
Empirical ethics
Good care does not imply that it is something static or a-historical but rather that it is related to several
continual developments in the field of care and changing notions of what ‘good care’ is (Pols, 2010; Hertogh,
2010). An empirical ethical approach tries to investigate good care by looking at the variety of goods that
people involved in health care practices find important (Hertogh, 2010; Willems and Pols, 2010). In order
to explore what good care with ST in residential care involves, this thesis researches what professionals and
ethicists conceive of good care with ST, and also explores the practices where care with ST takes place. As
stated above, this does not mean departing from a specific theory of good care (with ST), but rather to
‘critically interact’ empirical research with conceptual ethical research (Dierckx de Casterlé et al., 2011). This
empirical research, which uses multiple methods, is needed to arrive at a scientifically sound description and
interpretation of complex and multiplex (social) phenomena. This thesis tries to achieve this by setting forth
the state of the ethical debate, by consulting professionals and ethicists on their views of an ethically sound
application of ST and by describing, analyzing and evaluating two different (residential) care practices where
ST is applied. Ethical arguments of what good care with ST might be, can then either be tested by empirical
evidence or might be grounded in the best scientific evidence. By consequently (re)thinking and reflecting
conceptually on the empirical evidence, any (implicit) normativity resulting from the researched practices of
care might accordingly be elicited (Leget et al., 2009; Hertogh, 2010).
Approach and analysis
In order to answer the research question a different series of studies were performed in sequential order
(see also figure 1): a systematic literature review to set forth the state of the ethical debate on ST (Chapter
2); two concept mappings as developed by Trochim, consulting care professionals and ethicists on their
views on ST (Chapter 3 and 4). An explorative survey was designed in order to select two care settings for
further ethnographic research, including participant observation and interviews, in order to explore
experiences of both clients and nursing and support staff with ST (Chapter 5 and 6). Based on all the data
a practice guideline was developed (Chapter 7). By using a multitude of methods, this research aims for both
complementarity, development and triangulation (Greene, 2007). For example the first three studies
(Chapters 2-4) contribute to the generation of broad ‘sensitizing concepts’, which were consequently used
as a general sense of reference and guidance for the ethnographic field study. This is important because the
ethnographic field study (in Chapters 5 and 6) used a grounded theory approach whereby concepts emerge
out of the data; meaning is created through the generation of data (Corbin and Strauss, 2008). Analyzing in
accordance with a grounded theory approach meant data analysis and data collection taking place in the
same time frame, in order to search and identify patterns, after which they were compared and analyzed on
differences and similarities (‘constant comparison’ Glaser and Strauss, 1967; Corbin and Strauss, 2008). The
sensitizing concepts generated through the preceding studies were therefore used primarily to lay the
foundation for the ongoing analysis of research data, rather than specifically seeking to test, improve, or
refine them (Bowen, 2006). The findings of the ethnographic study on the other hand were used in the
general discussion of this thesis (Chapter 8) to complement and sharpen the findings of the preceding
studies, as they aim to show how concrete behavior and underlying considerations take shape in the
researched practices.
Engaging in any form of grounded theory study, however, requires the researcher to address a set of
common characteristics and quality procedures: e.g. theoretical sensitivity, triangulation, constant
comparative methods, coding, the meaning of verification, identifying the core category, memoing, peer
debriefing and the measure of rigor in order to enhance the reliability, credibility and transference of the
study (cf. Glaser and Strauss, 1967; Wester, 1995; Boeije, 2005; Corbin and Strauss, 2008), as will be
described in chapters five, six and eight.
Research boundaries
Although long term residential care comes in many forms and with varying populations, this research
focuses on two specific populations: people with dementia and people with ID. Most (elderly) people with
dementia are admitted to a nursing home in the advanced stages of the disease and die there. With
approximately 65,000 nursing home beds in the Netherlands in 345 nursing homes, 58% of these beds are
organized in dementia special care units (Actiz, 2006; De Boer, 2011). People with dementia have multiple
impairments that make it difficult for them to make choices, retain and use information, communicate
wishes, and understand their present circumstances (Powers, 2001). Care in Dutch nursing homes is mostly
provided by the nursing staff members with qualification levels of basic nurse aides, (certified) nursing
assistants and registered nurses.
Figure 1. Process of the research steps in this thesis.
LITERATURE
REVIEW
SURVEY
CONCEPT
MAPPINGS
SELECTION OF
SETINGS
SENSITIZING
CONCEPTS
ETHNOGRAPHIC FIELD STUDIES
FINDINGS
Other members of the multidisciplinary team might include elderly care physicians, physiotherapists, and
psychologists (Gulpers, 2013). With approximately 69,000 people with ID in need of longpopulation of
people with ID is far more heterogeneous in age and cognitive disability and care services often also include
a stronger focus on behavioral healthcare. Also, people with ID in need of long term residential care are
frequently younger and physically more able compared to people with dementia. Hence, residential care for
people with ID tends to be much longer, as these clients will often spend the majority of their life in
residential care. As stated above, despite intrinsic differences between both subgroups, the concomitant
normative and practical issues that arise with the application of ST are highly similar. In addition, there is
also overlap between the two populations, such as elderly clients in both care sectors with dual diagnoses
of dementia and ID. What is more, any differences in results between each subgroup might lead to new and
relevant insights, as similar results can corroborate previous findings.
OUTLINE OF THESIS
The following five chapters of this thesis (2-6) are based on articles that have been published or accepted
by a peer-reviewed scientific journal.
Chapter 2 is a systematic literature review on the moral and practical acceptability of ST in residential care
for people with dementia or ID, to set forth the state of the ethical debate.
Chapter 3 uses the method of concept mapping in order to consult care practitioners and academics on
their views on an ethically sound application of ST in residential care for people with dementia.
Chapter 4 also uses the method of concept mapping, to consult care practitioners and academics on their
views on an ideal application of ST in residential care for people with ID.
Chapter 5 is the first part of an ethnographic field study, using participant observation and interviews, to
investigate how ST is actually being used by nurses and nursing staff in long term residential care for people
with dementia or ID, in order to explore the possible benefits and drawbacks of ST in practice.
Chapter 6 is the second part of the ethnographic field study, which explores the experiences of clients with
ST in order to find out how ST influences their autonomy including privacy.
Chapter 7 provides (an English summary of) a practice guideline that was designed as part of this research
and is based on the research results, in order to enable caregivers and care organizations to design their own
policy of good care with ST (Niemeijer et al., 2012).
Chapter 8, the general discussion of this thesis, reflects on the previous chapters and tries to formulate key
elements for good care with ST, along with recommendations for policy, practice and future research.
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Chapter
2
Ethical and practical
concerns of surveillance
technologies in
residential care for people
with dementia or
intellectual disabilities: an
overview of the literature
Niemeijer, A.R., Frederiks, B.J.M.,
Riphagen, I.I., Legemaate, J., Eefsting,
J.A. and Hertogh, C.M.P.M.
Published as:
Niemeijer, A.R., Frederiks, B.J.M., Riphagen, I., Legemaate, J., Eefsting, J.A., Hertogh,
C.M.P.M. (2010). Ethical and practical concerns of surveillance technologies in residential
care for people with dementia or intellectual disabilities: an overview of the literature.
International Psychogeriatrics 22, 7: 1129-1142.
ABSTRACT
Background Technology has emerged as a potential solution to alleviate some of the pressures
on an already overburdened care system, thereby meeting the growing needs of an expanding
population of seriously cognitively impaired people. However, questions arise as to what
extent technologies are already being used in residential care and how ethically and practically
acceptable this use would be.
Methods A systematic literature review was conducted to explore what is known on the moral
and practical acceptability of surveillance technologies in residential care for people with
dementia or intellectual disabilities, and to set forth the state of the debate.
Results A total of 79 papers met the inclusion criteria. The findings show that application and
use of surveillance technologies in residential care for vulnerable people generates
considerable ethical debate. This ethical debate centers not so much around the effects of
technology, but rather around the moral acceptability of those effects, especially when a
conflict arises between the interests of the institution and the interests of the resident.
However, the majority of articles lack in depth analysis. Furthermore, there are notable
cultural differences between the European literature and American literature whereby in
Britain there seems to be more ethical debate than in America. Overall however, there is little
attention for the resident perspective.
Conclusion No ethical consensus has yet been reached, underlining the need for clear(er)
policies. More research is thus recommended to determine ethical and practical viability of
surveillance technologies whereby research should be specifically focused on the resident
perspective.
INTRODUCTION
W
ith various population trends showing increasingly aging societies, the
number of people with cognitive disabilities is rising and, concurrently,
the numbers of potential family members and formal caregivers are
decreasing. It has been predicted that these trends will ultimately lead to a care
vacuum, thereby increasing the pressures on an already overburdened care system
(Agree et al., 2005; Astell, 2006). Technology has emerged as a potential solution to
alleviate some of these pressures and meet the growing needs of an expanding
population of seriously cognitively impaired people. However, it is often in relation
to people with cognitive impairment or intellectual disabilities (ID) that the use of
technology has provoked conflicting reactions (Cash, 2003; Perry et al., 2008).
The application of technological interventions in the care for people with dementia
or ID often serves two purposes: they can offer assistance and support in the daily
life of residents, enabling a certain degree of independence and/or control over day
to day activities; and they can be used to monitor and safeguard residents from (selfinflicted) harm. It is this latter application of technology in particular, exemplified
by tagging and tracking devices, that has sparked considerable ethical debate among
healthcare professionals, jurists and ethicists. Although the focus has predominantly
been centered on the care of adults with dementia and ID dwelling in the
community, application of technology is also taking place in residential facilities
where the accent lies on surveillance and effective management of high risk
behaviors. However, it is still not clear what the ethical and practical implications of
these interventions would be in a formal residential care setting.
The main aim of this paper is thus to explore what is known about the moral and
practical acceptability of surveillance technologies in the residential care of people
with dementia and/or ID and to set out the current state of the ethical debate.
Although several excellent reports and guidelines can be found about (assistive)
technologies for people with dementia and/or ID in homecare or independent living
(Bjørneby et al., 1999; Marshall, 2000) these are still sorely lacking with regard to
residential care. This is all the more significant as technological applications in
residential settings differ from those in homecare and tend to fall into the above
mentioned latter category of technologies that aim to monitor and safeguard, rather
than assist and support.
This paper therefore provides an overview of the international literature on the
ethical and practical aspects of surveillance technologies in the residential care of
people with dementia and ID.
METHODS
We explored the available clinical and scientific literature on the moral and practical
acceptability of using surveillance technologies in the residential care of people with
dementia or intellectual disabilities.
PROCEDURE
The international literature was searched through the following six literature
databases: EMBASE.com (MEDLINE and EMBASE combined, search date 13
August 2009), PsycINFO (search date 13 August 2009), CINAHL (search date 13
August 2009), INSPEC (search date 17 August 2009), and ETHXweb (search date
17 August 2009). To identify as many articles as possible an extensive search without
time limitations was conducted for all databases using combinations of multiple
terms. Both “controlled terms” (EMTREE in EMBASE.com, Thesaurus of
Psychological Index Terms in PsycINFO and Subject Headings in CINAHL) and
“free text terms” were used, and placed into four categories. The first category
involved terms that captured all forms of dementia or intellectual disability. The
second category entailed all terms related to surveillance technology. The third
category entailed terms related to the (potential) outcome or influence of this
technology, either as something that could result in, for example, (more) “freedom”,
“security”, “quality of life”, “needs” or “independence”, or as something that, for
instance, “restricts”, “restrains” “limits” or “controls”. The last category entailed
terms to include all articles written in Dutch, English, German and French. All
databases were searched using “or-relations” within these categories, and “andrelations” between the categories (a detailed account of the searches can be obtained
from the first author).
The search resulted in a vast amount of potentially relevant articles. Two of the
authors independently assessed all of the identified articles by title and/or abstract,
in order to determine their eligibility for inclusion. Owing to the explorative
character of this overview, the following types of publication were also included:
policy statements, briefing papers, clinical reports, case studies and scientific books.
It must be stipulated here that only publications describing aspects related to the
above mentioned categories in residential healthcare settings were included.
Accordingly, publications that focused solely on extramural care (i.e. home care or
independent living) or did not also refer to residential healthcare were excluded. In
order to retrieve as many articles as possible, the reference lists of the identified
articles were searched for additional articles. Also added were articles pointed out to
us by colleague researchers. If at any time there was disagreement on the inclusion
of articles, the authors who assessed the article deliberated until they reached
consensus.
DATA ANALYSIS
All the included articles were read closely and analyzed for examples, cases or
discussions of surveillance technologies in the residential care of people with
dementia or ID. Our main objective was not to give a full description of all details
covered in these papers, but rather to provide a general thematic overview of all the
(ethical) issues that arise in the articles. The relevant information was analyzed and
classified into several themes. This classification was then discussed in the research
group in order to reach consensus on comprehensiveness and lucidity. The names
of these themes have mostly been terms that were used in the included articles or
were themes that have also been categorized in a similar fashion in some of the
included articles.
Careful analyses of all the topics by the authors have shown they all dealt, in one
way or another, with three perspectives: that of the institution; the resident; and the
care relation. Thus we see from the perspective of the institution that there are three
main considerations or “aims” with regard to the use of surveillance technologies:
whether the technology works, whether it might increase security or reduce risks,
and whether it could relieve staff burden. With regard to the resident, the main
considerations can be regarded in terms of how the surveillance technologies will
effectively influence and/or improve the resident’s freedom (of movement);
autonomy and human rights, and/or will respect the resident’s personhood, privacy
and dignity. With regard to the care relation, the main considerations were the ethical
dilemma of duty of care versus autonomy of the resident; whether technology would
substitute care and whether technology would result in or take into account personcentered care. Consequently, these three central themes together with the subthemes
have been used to provide a clear structure of the results as presented in this article.
RESULTS
The initial literature search provided us with 2610 hits: 1647 from EMBASE.com;
300 from PsycINFO; 226 from CINAHL; 598 from INSPEC and 76 from
ETHXweb. After careful selection only 49 could be included. Another 30 articles
were added from other sources, such as reference lists, colleagues and other
researchers, ultimately resulting in a total of 79 papers. Table 1 presents an overview
of the three central themes and subthemes as covered in the articles. However, we
would like to stress that owing to their close relatedness, the identified (sub)themes
are not mutually exclusive. The majority of the articles included cover multiple
themes, and are therefore cited more than once.
INSTITUTIONAL AIMS
The main consideration with regard to surveillance technologies from the
institution’s point of view is whether they are effective. However, determining
whether use of surveillance technologies is going to be effective is dependent on
which effects one intends to measure. Here the literature indicates that from the
perspective of the institution the desired effects can be measured in terms of
functional efficacy, increased security or a reduction of risks, or in terms of a reduction of staff
burden.
FUNCTIONAL EFFICACY
We found nine (non-randomized controlled trials; non-RCT) research or case
studies that have examined whether surveillance technologies function effectively
(Gaffney, 1986; Blackburn, 1988; Negley, 1990; McShane et al., 1998; Freeman, 2004;
Miskelly, 2004; Miskelly et al., 2005; Chen et al., 2007; Schikhof and Mulder, 2008).
The earliest (research) articles to report on this topic go back as far as the 1980s and
describe rather simplistic alarm systems or security devices, often with the aim of
alerting staff to the presence of a resident in a restricted area (Gaffney, 1986;
Blackburn, 1988; Negley, 1990).
Almost a decade later, McShane et al. (1998) designed a tracking system that was
adapted from its widespread employment in animal research, but the author
concluded that refinements were needed before the system could be called useful.
Miskelly (2004) and Miskelly et al. (2005) tested tagging equipment more successfully.
It was derived from a prisoner-tagging system and was tested for six months in a
residential home. Since the installation of the system, no events where wandering
has taken place have been missed.
Chen et al. (2007) demonstrated the application of an intelligent monitoring system
where people going absent from dementia units were monitored using a camera
network. The system was able to detect such absences with almost 100 % accuracy.
Schikhof and Mulder (2008) designed and tested a system for monitoring people
with dementia at night through the use of infrared sensors, a camera and personal
digital assistants (PDAs). The nursing assistants working with the system rated it as
satisfactory during the test. Practical problems in these studies included removal of
the device by the resident (Blackburn, 1988; Thompson, 1998; Kearns et al., 2007),
system misses and false alarms (Chen et al., 2007; Schikhof and Mulder, 2008), a
power failure (Schikhof and Mulder, 2008) or refusal by the resident (McShane et al.,
1998).
SAFETY/RISKS
Many articles mention in passing that surveillance technologies could lead to a
reduction of serious incidents or increased safety, but frequently they do not
substantiate this claim (Marr, 1989; Futrell and Melillo, 2002; Welsh et al., 2003;
Nelson et al., 2004; Mental Welfare Commission Scotland (MWCS), 2005; Plastow,
2006; Sävenstedt et al., 2006; Robinson et al., 2007b; Hughes, 2008a). However, an
extensive RCT study by Lauriks et al.(2008) concluded that the residents with
surveillance technologies had significantly fewer falls than those without. In another
RCT study, Kwok et al. (2006) concluded that technology (in the form of a bedchair
pressure sensor) enhances supervision by nursing staff and may therefore prevent
falls. Other research papers/ case studies all report that the (multiple) devices they
have either examined or designed have the benefit of reducing (potentially) harmful
incidents (Blackburn 1988, Thompson, 1998; Gibson, 2003; Freeman et al., 2004;
Chen et al., 2007, Miskelly et al., 2004; 2005; Schikhof and Mulder, 2008).
Nicolle (1998) surveyed professional experts working in the field of dementia,
including care workers and administrators, and found that the reliability of the
technological intervention and concomitant increase in safety of the resident was
seen to be a key consideration when deciding whether or not to use technology. A
survey by Engström et al. (2005) amongst staff membersin a residential home for
people with dementia showed that job satisfaction rose after an increase in
technological support. Engström et al. argued this could be due to increased security
and thus more staff control. However, a certain vigilance is advised regarding the
reliability of surveillance technologies, as technology which is not reliable is virtually
useless and may introduce more dangers (Lancet, 1994; Marshall, 1997; Nicolle,
1998). As several articles point out, technology does not remove risk completely,
and with the implementation of new technologies intended to produce a more secure
environment, there is a danger of creating a false sense of security among the staff
(Mapp, 1994; Bewley, 1998; Nicolle, 1998; MWCS, 2005; Eltis, 2005b; Alzheimer’s
Society, 2008; Hughes, 2008a).
Additionally, the introduction of new technologies might also create new risks, such
as a delay in response by the staff (Perry et al., 2008). This is corroborated by one
study (Aud, 2004) that reviewed reports of unauthorized absences from long-term
care facilities by elderly residents with dementia. Content analysis of the report
identified patterns showing, among other things, ineffective use of alarm devices,
such as staff not checking the alarm. This tended to happen when the alarm did not
work consistently, something described by Schikhof and Mulder (2008) as “alarm
fatigue”. In addition, false alarms can be very time consuming (Nursing, 2007;
Schikhof and Mulder, 2008).
Finally, surveillance technologies such as video surveillance can also serve as a tool
to ensure proper care of residents, by protecting them from abuse in the nursing
home (Edwards, 2000; Carlson, 2001; Adelman, 2002; Kohl, 2003; Cottle, 2004;
Bharucha et al., 2006). These “granny cams”, as they are irreverently referred to, have
spurred a good deal of predominantly legal debate in the U.S.A., where the main
tension is between safety and privacy (Edwards, 2000; Carlson, 2001; Adelman,
2002; Kohl, 2003; Cottle, 2004; Bharucha et al., 2006), as will be discussed further
below.
STAFF BURDEN
With the reduction of incidents (or worrying about the risk of incidents) through the
use of surveillance technologies, staff burden or stress could decrease in several ways
and lead to increased job satisfaction. Ultimately, reducing staff stress can result in
extra time spent with residents, more person-centered care or other resident care
activities (Blackburn, 1988; Counsel and Care, 1993; Gaffney, 1997; Marshall, 1997;
McShane et al., 1998; Melillo and Futrell, 1998; Nicolle, 1998; Marshall, 2003;
Engström et al., 2005; Sturdy, 2005; Alisky, 2006; Hughes, 2008a). Reducing staff
stress and being able to provide more time and personal care to residents is often
described as a “staff need” (Gaffney, 1986; Cassidy, 1994; Marshall, 1997; Melillo
and Futrell, 1998; Nicolle, 1998; Cahill, 2007; Rasquin et al., 2007). Although
Marshall (1997) argues that these needs of caregivers are often neglected, others
caution that too much priority might be given to these needs and so overshadow
other (ethical) issues of using surveillance technologies for the care of people with
dementia or ID (Bewley, 1998; Bright, 2001; Eltis, 2005a; 2005b; Astell, 2006;
Plastow, 2006).
Lauriks et al. (2008), however, concluded that the use of surveillance technologies
had no influence on the job satisfaction of nurse aides. In addition, a recent survey
among those working in the field of dementia, including nurses, family carers and
doctors, showed there was ambivalence as to whether tagging would mean less worry
for carers. Moreover, there was a strong inclination that such use should be
monitored, and ethical concerns were voiced by staff (Hughes et al., 2008). Topo
(2009), who conducted a review of studies that focused on technology, including
monitoring systems, supporting people with dementia and their carers, found that
most research on this subject was biased towards safety issues and caregiver
wellbeing. The bias towards safety may be due to the fact that caregivers were the
main source of information in the majority of studies he reviewed and the role of
people with dementia was minimal (Topo, 2009).
CARE RELATION
This theme lies between the two central themes of “institutional aims” and “resident
concerns” and involves the subthemes of duty of care vs autonomy; substitution of care and
person-centered care.
DUTY OF CARE VERSUS AUTONOMY
Many articles have signalled an apparent conflict between the (rights of) autonomy
of the resident and the duty of care by the staff when it comes to using surveillance
technologies. Autonomy here is often understood as self-control, freedom of choice or “selfrule” of the resident and duty of care as beneficence (doing good) and non-maleficence
(doing no harm), often in the form of providing more security, i.e. safeguarding the
residents (Male and Clark, 1991; Lancet, 1994;Marshall, 1997; Bewley, 1998; Nicolle,
1998; Penhale and Manthorpe, 2001; Hughes and Louw, 2002; Hughes and
Campbell, 2003; Welsh et al., 2003; Kirkevold and Engedal, 2004; Eltis, Eltis, 2005b;
MWCS, 2005; Astell, 2006; Bharucha et al., 2006; Casas, 2006; Sävenstedt et al., 2006;
Alzheimer’s Society, 2007; Robinson et al., 2007b; Hughes et al., 2008; Niemeijer and
Hertogh, 2008; Perry et al., 2008). One survey found that professional carers
exhibited less tolerance of risk than family carers, favoring resident safety over
autonomy owing to a fear of litigation. Respondents felt society would regard them
as negligent if they did not operate a locked-door policy in nursing homes (Robinson
et al., 2007b). A way to deal with this problem is through an organizational risk
assessment and management policy, for, as Bewley (1998) suggests, if the care home
is following good practice guidelines, it should not fear litigation.
However, the issue of autonomy is problematic in the case of people with dementia
or ID because autonomy is often linked with rational decision-making and agency,
whilst these people frequently have a diminished decision-making capacity
(Kirkevold and Engedal, 2004). There is a tendency to infantilize people with
dementia, who can seem childish, but that does not mean we should not respect
them as adults with some remaining skills however limited (Marshall, 1997; Bewley,
1998). Consequently, using technology to assist people with dementia becomes
problematic if it takes away their ability to do things for themselves (Astell, 2006).
The resident’s right to autonomy should also be balanced against the risk of harm
both to themselves and to others (McShane and Hope, 1994; Welsh et al., 2003). A
clear risk policy could enable staff to encourage personal autonomy; it can clarify
appropriate non-intervention by staff as well as occasions when they can and should
intervene (Bewley, 1998).
SUBSTITUTION OF CARE
Alisky (2006) has drawn attention to the mounting problem of populations who are
becoming ever more dependent. In order to deal with this “demographic time
bomb” part of the answer might lie in “technology taking the place of human
supervision”. However, using technology in place of human supervision is
something that many people oppose or warn against in the residential care of people
with dementia or ID. Thus technology should not be used to substitute staffing or
save staffing costs (Male and Clark, 1991; Counsel and Care, 1993; Cassidy, 1994;
Marshall, 1997; Marr, 1998; Thompson, 1998; Welsh et al., 2003; MWCS, 2005;
Hughes et al., 2008; Schikhof and Mulder, 2008).
Table 1. Central themes and subthemes on effectiveness and acceptability of surveillance technologies in residential care for people with dementia
and ID as covered in the literature
INSTITUTIONAL AIMS
Functional
Efficacy
Safety/
Risks
Aud 2004; Blackburn 1988; Bharucha et
al., 2009; Gaffney 1986; Kearns et al.,
2007; McShane et al., 1998; Miskelly 2004;
Negley 1990; Nijhof et al., 2009; Robinson
et al., 2006, Robinson et al., 2007a;
Schikhof & Mulder 2008; Topo 2009;
Adelman 2002; Alisky 2006; Aud 2004;
Bewley 1998; Bharucha et al., 2006;
Blackburn 1988; Carlson 2001, Cottle
2004; Edwards 2000; Engström 2005;
Freeman 2004; Futrell 2002; Gibson 2003;
Hughes 2008a; Kohl 2003, Kwok 2006;
Lauriks 2008; Marr 1989; Marshall 1997;
McShane & Hope 1994; Moffat 2008;
MWCS 2005; Miskelly et al., 2004;
Miskelly et al., 2005a; Nelson et al., 2004;
Nicolle et al., 1998; Nursing 2007; Perry et
al.,. 2008; Plastow 2006; Robinson et al..,
2007b; Sävenstedt et al., 2006; Schikhof &
Mulder 2008; Thompson 1998; Topo
2009; Welsh et al., 2003
CARE RELATION
Duty of
Care vs.
Autonomy
Substitutio
n of Care
Astell 2006; Alzheimer Society 2007; Bewley
1998; Bharucha et al., 2006; Casas et al.,
2006; Eltis 2005a; Eltis 2005b; Hughes &
Louw 2002; Hughes et al., 2003; Hughes et
al., 2008; Kirkevold 2004; Male & Clark
1991; Marshall 1997; MWCS 2005;
Nicolle 1998; Niemeijer & Hertogh 2008;
Perry et al., 2008; Penhale et al., 2001;
Robinson et al., 2007b; The Lancet 1994;
Welsh et al.,. 2003
Alisky 2006; Alzheimer Society 2007;
Bewley 1998; Cassidy 1994; Hughes et al.,
2008; Hughes, 2008a; Kearns 2007; Male
& Clark 1991; Marr 1998; Marshall
1997; MWCS 2005; Nazarko 2008;
Penhale 2001; Perry et al., 2008; Plastow
2006; Sävenstedt et al., 2006; Schikhof &
Mulder 2008; Sturdy 2005; Thompson
1998; Welsh et al.,. 2003
RESIDENT CONCERNS
Freedom &
Consent
Dignity / Stigma
Adelman 2002; Alzheimer Society 2007;
Bail 2003; Bewley 1998; Bharucha et al.,
2006; Carlson 2001, Cottle 2004; Eltis
2005a; Eltis2005b; Freeman 2004; Gaze
1989; Hughes et al., 2003; Hughes et al.,
2008; Hughes 2008a; Hughes 2008b;
Kirkevold 2004; Kohl 2003; Kwok et al.,
2006; Moffat 2008; MWCS 2005; Marr
1989; Marshall 1997; McShane & Hope
1994; Negley 1990; Perry et al., 2008;
Sturdy 2005; The Lancet Neurology 2008
Astell 2005; Astell 2006; Alzheimer Society
2007; Bail 2003; Bewley 1998; Bharucha et
al.,. 2006; Cahill 2003; Cahill 2007;
Carlson 2001; Counsel and Care 1993;
Eltis 2005a; Eltis 2005b; Hughes & Louw
2002; Hughes et al., 2003; Hughes et al.,
2008; Hughes 2008a; Marr 1989;
McShane et al., 1998; Nazarko 2008;
Niemeijer & Hertogh 2008; O’Neill 2003;
Parette & Scherer 2004; Perry et al., 2008;
Plastow 2006; Robinson et al.,. 2006,
2007b; Sävenstedt et al.,. 2006; Sturdy
2005; The Lancet Neurology 2008; Welsh et
al., 2003
Staff
Burden
Alisky 2006; Astell 2006; Bewley 1998;
Blackburn 1988; Bright 2001; Cahill 2007;
Cassidy 1994; Eltis 2005a; Eltis 2005b;
Engström et al., 2005; Gaffney 1986;
Hughes et al., 2008; Hughes 2008a; Melillo
1998; Marshall 1997; Marshall 2003;
Nicolle et al.., 1998; Plastow 2006; Rasquin
et al., 2007; Sturdy 2005; Topo 2009
Person
centered
Care
Astell 2005; Astell 2006; Bail 2003;
Bewley 1998; Bharucha et al., 2006;
Bharucha et al., 2009; Cahill 2003; Cahill
2007; Counsel and Care 1993; Eltis 2005a;
Eltis 2005b; Freeman 2004; Hughes et al.,
2003; Hughes et al., 2008; Hughes 2008a;
Hughes 2008b; Marshall 1997; Marshall
2003; MWCS 2005; Niemeijer & Hertogh
2008; Nijhof et al.,. 2009; O’Neill 2003;
Parette & Scherer 2004; Perry et al.., 2008;
Plastow 2006; Robinson et al.,.2006,
2007a; Robinson et al., 2007b; Schikhof &
Mulder 2008; Sturdy 2005; Welsh et al.,
2003
Privacy
Alzheimer Society 2007; Bewley 1998;
Bharucha et al., 2006; Bharucha et al.,
2009; Bright 2001; Burgess 2000; Carlson
2001; Casas 2006; Counsel and Care 1993;
Edwards 2000; Eltis 2005a; Eltis 2005b;
Hughes et al., 2003; Hughes et al., 2008;
Hughes 2008a; Holzinger et al.,. 2008;
Kearns et al.., 2007; Male & Clark 1991;
Marshall 1997; Marshall 2003; McShane
& Hope 1994; Nijhof et al.,.2009; Perry et
al., 2008; Plastow 2006; Robinson et a.l,
2007b; Sävenstedt et al.. 2006; Thompson
1998; Welsh et al., 2003
What is more, surveillance technologies should not replace human contact or personal care (Cassidy, 1994;
Penhale and Manthorpe, 2001; Sturdy, 2005; Alzheimer’s Society, 2007; Kearns et al., 2007; Hughes, 2008a;
Nazarko, 2008; Perry et al., 2008). This was a concern identified by Sävenstedt et al. (2006) in interviews with
caregivers, who related actual physical presence to genuine care. Contact with staff is the main form of social
interaction for many people with ID; if surveillance technologies potentially lead to reduced staff
involvement, loss of this social contact might ultimately result in increased social isolation (Perry et al., 2008).
Technology as a substitute for personal care might also lead to a degrading and undervaluing of the skills
that staff need to employ, or it might distract organizations from the need to provide better training to staff
(Counsel and Care, 1993; Cassidy, 1994; Hughes et al., 2008). What is more, if technology does lead to
reduced staff levels, then the technology could itself cause or reinforce behavior which is seen as difficult
for staff to handle (Bewley, 1998). On the other hand, proper use of technology is also demanding of staff
time (Thompson, 1998; Lauriks et al., 2008); for example, an alarm system demands intervention, and staff
are required to accompany residents who leave the building, rather than stop them leaving. According to
one author, this would “contradict initial concerns about the technology being used as a device to cut
staffing” (Thompson, 1998).
PERSON-CENTERED CARE
According to Tom Kitwood any intervention in dementia care should be concerned primarily with
maintenance and enhancement of personhood (Kitwood, 1997). This view on personhood is reflected in
the debate on surveillance technologies, often by positing that technology should put the needs of people
with dementia or ID first, not only enabling but also maintaining them as human beings. Some authors also
argue that technology denies personhood altogether (Hughes and Campbell, 2003; O’Neill, 2003; Astell,
2005; 2006; Eltis, 2005a; Eltis, 2005b).
Bewley (1998) notes that the demands of work can make staff feel anxious and stressed, leading them to
become very task focused, instead of person focused. A reduction in staff stress through the use of
surveillance technologies could then lead to more person-centered care (Marshall, 1997). However, Plastow
(2006) argues that surveillance technologies are not a replacement for staff providing good quality personcentered care.
Ideally, surveillance technologies should be tailored to the individual by recognizing the complex needs of
those being cared for (Counsel and Care, 1993; McShane et al., 1998; Marshall, 2003; Welsh et al., 2003;
Freeman, 2004; Parrette and Scherer, 2004; Sturdy, 2005; Cahill, 2007; Robinson et al., 2007a; Hughes, 2008a;
Perry et al., 2008). However, even at the design stage it is important to take a human-centered approach, i.e.
a user-centered design that is based around the real and actual requirements of users and involves them
from beginning to end (Schikhof and Mulder, 2008; Bharucha et al., 2009) as was achieved in the study by
Schikhof and Mulder. Because this study involved people with dementia, resident involvement remained
difficult (Schikhof and Mulder, 2008). However, Nijhof et al. (2009) maintain that for technology to be
effective it is important that (in) formal caregivers and people with (mild) dementia are involved at the start
of the design process.
Improving the quality of life of the resident is another aspect of person-centered care. Subsequently, several
articles have stated that if surveillance technology is to be used, then quality of life either should or could
be enhanced (Negley, 1990; Counsel and Care, 1993; Marshall, 1997; Thompson, 1998; Cahill, 2003; Astell,
2006; Hughes et al., 2008; Bharucha et al., 2009). In a survey of staff, quality of life proved to be one of the
key considerations when deciding whether or not to use technology (Nicolle, 1998). Lauriks et al. (2008)
concluded that technology had a positive effect on the quality of life of the resident because of several
factors, including increased freedom of movement and autonomy.
RESIDENT CONCERNS
As early as 1989 use of surveillance technologies in the residential care of people with dementia and ID was
seen to both potentially uphold and interfere with human rights (Marr, 1989). With regard to the central
theme of “resident concerns”, three subthemes can be discerned from the literature: freedom and consent, privacy
and dignity/stigma.
FREEDOM AND CONSENT
According to Marshall (1997), health authorities tend to demonstrate a knee-jerk reaction to technology,
seeing it as a form of restraint. Correspondingly, several articles still regard surveillance technologies as a
(possible) form of restraint (Hughes and Campbell, 2003; Kirkevold and Engedal, 2004; MWCS, 2005;
Sturdy, 2005; Holzinger et al., 2008; Hughes, 2008a; 2008b). On the other hand, surveillance technologies
are often viewed as a (more suitable) alternative to freedom restrictions or restraints (Gaze, 1989; Negley et
al., 1990; Marr, 1998; Bail, 2003; Freeman, 2004; Alzheimer’s Society, 2007; Hughes et al., 2008; Hughes,
2008b; Moffat, 2008). However, even as an alternative to restraints, freedom is still curtailed (Gaze, 1989;
Marr, 1998). Surveillance technologies might infringe on a “basic need for us all to access the world in which
we live” (Sturdy, 2005).
According to Welsh et al. (2003), the tenet that people should have access to space if they wish should be
written into the care philosophy of every social and nursing home environment. Bewley (1998) notes that
in practice the use of restraints is often justified in the language of safety: i.e. without the restraint the
individual is in danger of harming themselves, and sometimes, others. Protection is not only needed against
the erosion of basic human rights (Hughes and Campbell, 2003), but if technology is used in the longer
term, there is the fear that rights to personal health and/or safety will be considered above rights to privacy
and dignity (Eltis 2005a; Eltis, 2005b; Plastow, 2006).
Several articles have pointed to the complex issue of consent, often stating that informed consent should
always be obtained in some way or other, before implementing technology. Employing surveillance
technologies without consent is considered by certain authors as either a civil wrong, illegal and/or
tantamount to assault (Male and Clark, 1991; Mapp, 1994; Marshall, 1997; Bewley, 1998; Thompson, 1998;
Penhale and Manthorpe, 2001; Marshall, 2003; Counsel and Care, 2003; Kirkevold and Engedal, 2004;
MWCS, 2005; Alzheimer’s Society, 2007; Robinson et al., 2007b; Hughes, 2008b; Lancet, 2008; Perry et al.,
2008).
What makes matters more difficult with regard to consent is the fact that vulnerable residents might be
more prone to response bias, often in the form of acquiescence. For instance, answers provided by people
with ID can not necessarily be taken at face value (Perry et al., 2008). A way of dealing with this might be
through wide consultation, for instance to include residents’ relatives, the staff, the administration of unit
and/or other agencies or through the use of a care contract that is drawn up on admission (Male and Clark,
1991; Marshall, 1997; Thompson, 1998; Penhale and Manthorpe, 2001; MWCS, 2005; Perry et al., 2008).
A complicating situation could arise when one individual consents to the use of surveillance technologies
that are meant for all residents, whilst a second individual might withhold her consent (Bharucha et al., 2006;
Perry et al., 2008). A similar situation might develop when it is not the institution but the resident herself
who seeks to monitor her room through the use of so called “granny cams”. This would seem to have
(privacy) implications not only for the roommate who shares the room, but also for staff working in the
nursing home.
Residents cannot implicitly consent to surveillance, despite the fact that a roommate implicitly consents to
a lower expectation of privacy by sharing a room (Carlson, 2001; Adelman, 2002; Kohl, 2003; Cottle, 2004;
Bharucha et al., 2006). Nursing home employees, in contrast, appear to be entitled to limited expectation of
privacy. Here continued employment in the context of prior notification of electronic surveillance within
the facility implies informed consent, which shows that the pivot point in the whole legal analysis of video
surveillance in (U.S.A.) nursing homes is the taped individual’s reasonable expectation of privacy or lack thereof
(Carlson, 2001; Adelman, 2002; Kohl, 2003; Cottle, 2004; Bharucha et al., 2006).
PRIVACY
As mentioned above, there is a fear that with the implementation of technology, rights to health and safety
will overshadow rights to privacy (Eltis, 2005a; 2005b; Plastow, 2006). This seems to be particularly true
when it comes to the above mentioned issues of video surveillance, although the main difference here is
that it is the residents (or their representatives) themselves who waiver their rights to privacy in favor of
more protection (Edwards, 2000; Carlson, 2001; Adelman 2002; Kohl, 2003; Cottle, 2004; Bharucha et al.,
2006).
Nevertheless, surveillance technologies are viewed by many as being (potentially) invasive of privacy
(Counsel and Care, 1993; Bewley, 1998; Thompson, 1998; Bright, 2001; Hughes and Campbell, 2003; Welsh
et al., 2003; Eltis, 2005a, 2005b; Casas, 2006; Plastow, 2006; Sävenstedt et al., 2006; Alzheimer’s Society,
2007; Robinson et al., 2007b; Holzinger et al., 2008; Hughes, 2008a; Hughes et al., 2008; Perry et al., 2008;
Bharucha et al., 2009). Casas (2006) warns of the psychological “Big Brother” effect of surveillance
technologies on the resident. This is corroborated by a survey of people with dementia who spoke of their
concern over carer surveillance and the identity of “Big Brother”, whereby it would depend to some extent
who it was that monitored them (Robinson et al., 2007b).
McShane et al. (1994) argue that the argument that surveillance technologies might reduce privacy only has
force if we imagine that the person involved is trying to hide. Similarly, Male and Clark (1991) state that the
view that an electronic alert system would invade privacy can be countered by a substitute argument: the
resident would wish staff to know of their decision to leave the unit so that the duty of care could be
exercised to prevent any accidents occurring. In a recent survey amongst caregivers in the U.S.A. there was
total lack of concern for privacy among participants, to the surprise of the authors (Kearns et al., 2007).
DIGNITY/ STIGMA
Many articles have alluded to the protection of dignity in relation to surveillance technologies (Marr, 1989;
Nicolle, 1998; Thompson, 1998; Hughes and Louw, 2002; Counsel and Care, 2003; Hughes and Campbell,
2003; Welsh et al., 2003; Freeman, 2004; Eltis, 2005a; Eltis, 2005b; MWCS, 2005; Sturdy, 2005; Astell, 2006;
Bharucha et al., 2006; Plastow, 2006; S¨avenstedt, 2006; Hughes et al., 2008; Nazarko, 2008). Dignity is also
frequently mentioned in relation to the (potentially) stigmatizing effects of technology (Marr, 1989; Counsel
and Care, 1993; Bewley, 1998; McShane et al., 1998; Hughes and Louw, 2002; Bail, 2003; Cahill, 2003; 2007;
Hughes and Campbell, 2003; O’Neill, 2003; Welsh et al., 2003; Astell, 2005; 2006; Eltis, 2005a; 2005b; Sturdy,
2005; Plastow, 2006; Alzheimer’s Society, 2007; Robinson et al., 2007b; Hughes, 2008a; Hughes et al., 2008;
Lancet, 2008; Perry et al., 2008; Niemeijer and Hertogh, 2008).
Bail (2003) contends that residents intuitively understand the stigma attached to wearing a bracelet.
According to Eltis (2005b) being “tagged” may reflect the social value attributed to that group. Thus there
is the danger that surveillance technologies marginalize residents with dementia (Hughes, 2008a) or
monopolize the resident’s disability (Marr, 1989). Moreover, by using a technology that is typically used to
control people suggests that we view people with dementia as needing control and restraint (Astell, 2006).
With regard to people with ID, social acceptability of surveillance technologies is described as having great
influence on whether or not a particular device is being used by the person with developmental disabilities
or their family (Parette and Scherer, 2004). One way of dealing with this could be through the principles of
“universal design”, which can be conceived as a broad spectrum solution regarding products and
environments. It strives to include and help everyone, not just people with disabilities and recognizes the
social importance of how things look (Parette and Scherer, 2004; Perry et al., 2008).
DISCUSSION
By describing all aspects of the moral and practical acceptability of surveillance technologies in the
residential care for people with dementia and intellectual disabilities (ID), this paper is the first to give a
thematic overview of the international literature. Covering all the different viewpoints surrounding this
topic, it was our intention not only to set forth but also to elucidate the state of the ethical debate. So far
our general conclusion with regard to both groups of care recipients is that no consensus has yet been
reached on whether or not surveillance technologies are an ethically viable option in the formal care of
people with dementia or ID, thus strengthening the opinion that there is a great need for clear(er) policies
in the form of guidelines and/or protocols (Hughes and Campbell, 2003; Marshall, 2003;Welsh et al., 2003;
Plastow, 2006; Alzheimer’s Society, 2007; Hughes, 2008a; 2008b). What the literature does tell us is that the
ethical debate centers not so much around the effects of this technology (although these effects have scarcely
been studied), but rather around the moral acceptability of those effects, especially when a conflict arises
between the interests (i.e. desired effects) of the institution and the interests of the resident. From the
institution’s point of view, safety appears to be a key issue when deciding whether or not to use surveillance
technologies (Nicolle, 1998; Robinson et al., 2007b). However, these interests become morally problematic
when they influence or alter the care relation or are invasive of residents’ rights.
We further found that although many articles do touch upon this moral conflict and demonstrate a
rudimentary recognition of the ethical issues involved, the majority of discussion articles tend to give a
perfunctory summary of the views rather than an in-depth analysis, often sharing very similar content and
referring to the same few articles that appear to be pivotal in the discussion. An example of this is the
frequent and contradictory use of the concept of dignity, by proponents and critics alike of surveillance
technologies, thus contributing to the further ambiguity that already surrounds the meaning of the concept
in medical ethics (Macklin, 2003; Ashcroft, 2004). This is underlined by the study of Sävenstedt et al. (2006)
where the values and perceptions among interviewed carers revealed a duality in which carers viewed
technology as a promoter of both inhumane and humane care.
Another example of the lack of in-depth discussion is the assumption that either technology itself is “morally
neutral” (as stated in Bewley, 1998; Welsh et al., 2003; Astell, 2005), which suggests that only the use has
moral implications, or that any technological innovation (in healthcare) should necessarily be greeted with
suspicion. These frequently encountered but inadequate conceptions of technology overlook relevant
insights with regard to the philosophy and ethics of technology. Bruno Latour for instance asserts that a
substantial part of our everyday morality rests upon technological apparatuses. According to Latour,
technology and moral life cannot simply be divided and reduced to two antagonistic realms of means
(technology) and ends (morality). Rather, he views technology and morality as “indissolubly mingled
because, in both cases the question of the relation of ends and means is profoundly problematized.” (Latour,
2002). In a similar way, Casas et al. (2006) claim that the technical design of many devices “include
characteristics affecting the rights of the users that cannot be removed because they are substantially rooted
in the conception of the application”.
We also found the ethical debate lacking with regard to discussion of distributive justice or equal access to
these surveillance technologies, as most of the proposed technologies tend to be costly and thus cannot be
afforded by every person or facility. However, because most surveillance technologies are still in their
experimental (theoretical) phase, it could be that most authors found this less pressing.
In addition, our study also revealed noticeable cultural differences between the U.S.A. and Europe with
regard to approaches and attitudes towards the use of electronic devices in dementia care. For instance, in
the U.K. there seems to be much more discussion and debate combined with a more sceptical approach to
technology, as opposed to the U.S.A. where the use of these technologies is often encouraged, resulting in
an almost “mechanical acceptance” of technology (Eltis, 2005b; Astell, 2006), the single exception being
the legalistic debate around the so-called granny cams. What the exact reasons might be for this cultural
difference is difficult to pinpoint, although Karen Eltis (who is Canadian) gives some clues: “North
Americans’ readiness to welcome assistive technologies, often in want of in-depth ethical debates, arguably
speaks to our desire for expediency or quick fixes to multifaceted issues. American culture has been
described as one which places great import on cost and public security” (Eltis, 2005b). Instead, Eltis, in
agreement with the U.K.’s Alzheimer’s Society advocates a different approach that acknowledges the need
for serious reflection – rather than automatic acceptance – of these technologies in the dementia context
(Eltis, 2005b; Alzheimer’s Society, 2007).
The literature also shows a remarkable shortage of resident users’ perspectives, despite the substantial
amount of literature on perspectives of staff or family members. However, certain articles do point to this
lack in the literature and (only) two articles included resident perspectives (Robinson et al., 2006; 2007b).
Certain authors justify this apparent lack by pointing to the gravity of the dementia of residents in residential
care. However, this would not exclude people with mild(er) dementia or ID.
Another significant finding of our study is that, save for three articles (Male and Clark, 1991; Welsh et al.,
2003; Perry et al., 2008), there is hardly any mention of people with ID in the literature on the use of
surveillance technologies in the care for vulnerable residents, despite the fact that surveillance technologies
raise very similar ethical issues in people with dementia and ID. This is reflected in the fact that in several
European countries, e.g. the Netherlands, there exists one judicial framework that pertains to the rights of
both (institutionalized) groups.
Our study has certain limitations because the formulation of a clear definition of surveillance technologies
in the care of people with dementia and/or ID has proven to be difficult. A variety of names has been used
in the retrieved articles themselves, including telecare, electronic surveillance, information technology, wandering
technologies, and tagging and tracking. Astell (2006) distinguishes between technological interventions that enable
residents, and interventions that control residents, pointing out that assistive technologies will tend to fall in
the first category and surveillance technologies in the latter. Whether or not Astell’s latter distinction pertains
wholly to surveillance technology being applied in residential care remains to be seen.
Even though the featured technologies are predominantly interventions that aim to monitor and safeguard,
certain articles have featured technologies aimed at assisting residents. Moreover, these two categories do
not have to be mutually exclusive, as technology can have both an enabling and monitoring effect. In fact,
this might ultimately prove to be the ideal residential application. However, with regard to this study we felt
a broad formulation of “surveillance technologies” was necessary in order to encompass the majority of the
technologies that were featured in the literature for purposes of clarity, focus and scope. Secondly, although
broad search terms were used in the formulation of the search strategy, 30 of the 79 articles included in this
study still came from other sources, thus suggesting that these searches still omitted search terms necessary
to retrieve all the relevant articles. A more comprehensive list of search terms would have probably retrieved
a majority of the articles from other sources, as many of them were registered in the searched databases;
however, this would also have resulted in many non-relevant articles as well. Using strategies like citation
tracking, alongside predefined, protocol driven strategies, is a common occurrence in literature studies
(Greenhalgh and Peacock, 2005). Accordingly, by combining strategies and thereby looking beyond the
database, we anticipate to have covered most of the relevant literature.
CONCLUSION
In conclusion, it is our opinion that despite these limitations this literature review provides a clear
representation of the ethical and practical aspects of the use of technology in the residential care of people
with dementia and/or ID, thus providing an overview that was not previously available. Our overview has
shown that there is a clear lack of consensus on how surveillance technologies can contribute to the quality
of care for people with dementia or ID in an ethically viable way and has further pointed to omissions and
lack of depth within the ethical debate.
By presenting a thematic categorization of the various ethical aspects we hope this review identifies some
key elements for the development of clearer policies concerning the use of technology. Ideally, any
guidelines for the use of surveillance technologies in the residential care of people with dementia and/or ID
will not reduce all ethical and practical aspects to the single dilemma of safety versus autonomy, but will
consider and balance all of the following (and sometimes competing) interests: avoiding stigmatization,
enhancing freedom, respecting privacy, dignity and autonomy, and catering to the resident’s individual
needs.
As some of the ethical values such as dignity, privacy and autonomy have proved difficult to delineate,
further ethical research is needed to clarify and/or specify these concepts. To that end, both theoretical and
empirical research is needed. In view of the signalled lack of the resident user’s perspective in the literature,
it seems imperative that empirical research should be specifically focused on the views of residents.
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Chapter
3
The ideal application of
surveillance technology in
residential care for people
with dementia
Niemeijer, A.R., Frederiks, B.J.M., Depla,
M.F.I.A., Legemaate, J., Eefsting, J.A.
and Hertogh, C.M.P.M.
Published as:
Niemeijer, A.R., Frederiks, B.J.M., Depla, M.F.I.A., Legemaate, J., Eefsting, J.A. and Hertogh
C.M.P.M. (2011). The ideal application of surveillance technology in residential care for
people with dementia. Journal of Medical Ethics, 37(5): 303-10.
ABSTRACT
Background As our society is ageing, nursing homes are finding it increasingly difficult to deal
with an expanding population of patients with dementia and a decreasing workforce. A
potential answer to this problem might lie in the use of technology. However, the use and
application of surveillance technology in dementia care has led to considerable ethical debate
among healthcare professionals and ethicists, with no clear consensus to date.
Aim To explore how surveillance technology is viewed by care professionals and ethicists
working in the field, by investigating the ideal application of surveillance technology in the
residential care of people with dementia.
Methods Use was made of the concept mapping method, a computer-assisted procedure
consisting of five steps: brainstorming, prioritising, clustering, processing by the computer
and analysis. Various participants (ranging from ethicists to physicians and nurses) were
invited on the basis of their professional background.
Results The views generated are grouped into six categories ranging from the need for a right
balance between freedom and security, to be beneficial and tailored to the resident, and
clearly defined procedures to competent and caring personnel, active monitoring and clear
normative guidance. The results are presented in the form of a graphic chart.
Conclusions There appears to be an inherent duality in the views on using surveillance
technology which is rooted in the moral conflict between safety and freedom. Elaboration
of this ethical issue has proved to be very difficult.
INTRODUCTION
A
s we live in an increasingly ageing society, nursing homes are continually
battling with an expanding population of patients with dementia and a
decreasing workforce. One potential answer to this problem might lie in
the use of technology. Sophisticated technological devices, in particular those aimed
at monitoring and safeguarding residents, could not only support and assist staff but
might also alleviate the growing pressures on an already overburdened care system
(Agree et al., 2005; Astell, 2006).
However, the use and application of surveillance technology (ST) in dementia care
has led to considerable ethical debate among healthcare professionals and ethicists.
There are those, for instance, who view the use of ST as either an infringement of
human rights or as contrary to human dignity, as it reduces or infringes privacy and
removes personhood, not to mention its stigmatising effects (Cahil, 2003; O’Neill,
2003; Astell, 2006). Furthermore, resorting to technology in general might result in
a reduction in the essential human contact between caregivers and residents and
could lead to a further decrease in staff in long-term care facilities (Cassidy, 1994;
Penhale and Manthorpe, 2001; Welsh et al., 2003). On the other hand, proponents
of ST have stressed that usage will not only create a more secure environment
(thereby reducing caregiver stress), but also increase liberty and dignity when
compared with a policy of incarceration (Hughes and Louw, 2002, Bail, 2003; Welsh
et al., 2003).
What can be discerned by some of the contrasting views, and is also corroborated
by an extensive literature review by Niemeijer et al. (2010), is that no ethical
consensus has yet been reached, underlining the need for clear(er) policies and
guidelines. In advance of a guideline that can count on support from within the field,
it is important to consult actual users and ethicists on their views on an ethically
sound and responsible application of ST. The main aim of this article is therefore to
explore how ST is viewed by care professionals working in the field by investigating
what the ideal application of ST in the residential care for people with dementia
might entail.
METHODS
Concept mapping
Use was made of the concept mapping method as developed by Trochim (1989).
Concept mapping is a computer-assisted procedure that enables a divergent group
of 10-20 people to elucidate a complex subject in a short amount of time. It involves
a bottom-up procedure which consists of five steps: brainstorming, prioritising,
clustering, processing by the computer, and analysis.
This procedure directs participants from concrete statements to more abstract
concepts, thereby conveying both different and correlative aspects of a given subject.
The use of concept mapping for the identification of groups of related statements
and specifying the nature of their interrelationship within a nominated topic area is
well established and has been applied to a range of subjects (Markham et al., 1994;
Trochim, 1999; Johnsen et al., 2000). In the Netherlands, concept mapping has been
used to bring into focus aspects of coping with illness (De Ridder et al., 1997) and
small-scale nursing home care (Te Boekhorst et al., 2007).
Participants
The researchers invited two categories of experts: professional carers (n=9) and
academics (n=6). The aim was to hear from a group of direct users of ST (i.e., the
professional carers) what their views are on working with these technologies, and
from a group of academics more familiar with the ethical aspects that can arise with
the application of ST. This bottom-up arrangement with a large group of carers and
a smaller group of academic thinkers was intentional as it was thought necessary to
provide a counterweight towards the more vocal group of academic thinkers. They
were approached through consultation conferences and via the Academic
Workplace for Nursing Home Medicine (Universitair Netwerk Ouderenzorg, UNO)
affiliated with the VU University Medical Center in Amsterdam. The final 15
participants comprised two elderly care physicians, two psychologists, two ethicists,
three registered nurses and six certified nurse assistants.
Procedure
The concept mapping session took place under the supervision of an independent
chair from the Trimbos Institute who is specialised in working with the concept
mapping method. The following procedure was used. Step 1 (brainstorming)
entailed the participants being requested to make statements in response to the
following sentence: ‘The ideal application of ST in the (residential) care for people
with dementia would entail that’. Participants could make statements freely. They
were not allowed to engage in any discussion unless the statements needed to be
clarified. All the statements were then dealt out in sets of cards to all participants.
Step 2 (prioritising) consisted of arranging all the statements in order of importance.
This had to be carried out individually. The statements had to be divided evenly
into five categories, ranging from the least important (1) to the most important (5),
thus preventing all statements from being valued as equally important. Through the
separate cards, participants could make small piles for each category. For step 3
(clustering), the participants were asked to cluster the statements that, in their view,
were compatible with regard to content. This again had to be carried out individually.
All the statements had to be categorised and a statement could only be used once;
however, participants were allowed to create as many numbers of clusters as they
wished.
This is where the participants’ active involvement ended and where the researchers
continued steps 4 and 5. During step 4 (processing) a special computer program
combined all the individual arrangements of steps 2 and 3 into a ‘group product’.
The results of this group product have the shape of a so-called ‘concept map’ which
is delineated through a multidimensional scaling technique. Through hierarchal
cluster analysis, statements were joined together in clusters of interrelatedness which
were in close proximity to each other on the land map. The choice of the number
of clusters was determined by the researchers and the independent chair. The value
of each cluster was subsequently calculated on the basis of the average score of the
priorities (step 2) allocated by the participants to each statement of the cluster. This
is expressed on the land map by the differences in height between the clusters. In
step 5 (interpretation) the land map was interpreted by the researchers in a separate
research meeting. Each cluster was named and the axes were given a significance
(see figure 1).
RESULTS
Brainstorming and prioritising
The focus sentence “The ideal application of ST in the (residential) care for people
with dementia would entail that.” was completed 63 times (see appendix 1). The 10
statements that were given the highest priority are listed in table 1. These statements
all bear relation to the effects on the resident, whereas other aspects such as the
functioning of the system, the role of the family or the effects on the personnel were
given lower priority.
Analysis of clusters
Based on the sorting of the 63 statements, the following six clusters were created in
step 4 of the concept map procedure (in order of priority):
Cluster 1: Balance between freedom and security (3.9)
Although this cluster is the most important, it contains only two statements where
the emphasis is on the importance of ST in the struggle against freedom restrictions.
The ideal application implies that it should give people with dementia more
individual freedom without risking their safety. Consequently, the statement that
puts forward the notion that the ideal application of ST would entail there being a
right balance between freedom and individual security has been chosen as the name
of this cluster.
Figure 1. Concept map: the ideal application of surveillance technology in
residential care for people with dementia.
Cluster 2: Beneficial and tailored to the individual resident (3.7)
This cluster consists of 23 statements, of which the first 10 can all be found in the
list of most important statements (table 1). The statements in this cluster appear to
bear most relation to the fact that ST should be beneficial and suited to the individual
resident (who might also reject it). The basis of its use should be the individual care
needed. The fact that technology should be tailored to the individual resident is
signified by terms such as ‘need’, ‘opportunities’, ‘individual application’ or that it
should link up with the individual living environment. The term ‘beneficial’ should
be interpreted here as including both something of benefit and something that does
not harm, as several statements indicate that it should both ‘improve’ freedom of
movement/safety/social
contacts
and
‘guarantee’
autonomy/privacy/self-determination or bodily integrity.
or
‘respect’
Cluster 3: Clearly defined practical procedures (3.1)
This cluster has only one statement which states that the ideal application of ST
would entail procedures being clearly defined for personnel who have to use it. The
term ‘practical’ could be seen here as something that can give concrete instruction
and guidance to staff rather than remain somewhat elusive.
Table 1. The 10 most important statements of the concept mapping session
MEAN ITEM PREFERENCES (SORTED)
Item
(Mean; SD)
1
it supports good care on an individual level
(4.57;
.53)
2
it contributes to the experience of freedom of those concerned
(4.43;
.67)
3
it is interwoven with the individual needs of the resident
(4.36;
.66)
4
it increases residents’ freedom of movement
(4.36;
.66)
5
the care demand/care need is the basis of its use (problem analysis)
(4.29;
1.35)
6
self independence is supported
(4.21;
1.31)
7
the individual application is starting point
(4.21;
.88)
8
it suits the individual living environment of the residents
(4.07;
1.35)
9
it is not a replacement for human closeness
(4.07;
2.35)
10
residents are respected as human beings
(4.07;
1.49)
Cluster 4: Competent and caring personnel (2.9)
This cluster consists of nine statements and all are about personnel, particularly their
competence with regard to using ST. This is clearly reflected in the statements
‘personnel are competent’, ‘personnel are sufficiently equipped’ and ‘personnel are
continuously schooled’. However, other statements are also about finding the right
balance between the use of technology and care for the residents that is, the use of
ST should not come at the cost of less care. Accordingly, the most important
statement asserts that the ideal application of ST would entail that ‘it does not result
in a reduction of staff ’. However, the statement that ‘carers should have affinity
with the residents’ also suggests that good care should be one of the primary
conditions in the application of ST.
Cluster 5: Actively monitored application (2.8)
This cluster contains 17 statements and these are predominantly about the system.
On the one hand, the statements concern the reliability of the system itself as the
most important statement in this cluster declares that the ideal application of ST
would entail that ‘the system works, is 99.9% reliable’. On the other hand, the
majority of the statements are mainly about handling the system in a conscious way
and, in particular, that the system is applied in a monitored manner (eg, through
evaluation), so it is the caregiver who masters the system rather than the other way
round. Terms expressed which signify reliable and actively monitored application
are: ‘evaluated’, ‘deliberation and decision- making’, ‘has been thought through well’,
‘adequate emergency plan’, ‘part of the care plan’ and ‘attention to attuning’.
Cluster 6: Clearly defined normative guidance (2.6)
This cluster has 11 statements with an emphasis on the need for normative guidance.
Most statements in this cluster indicate this need, as they either are about rethinking
or questioning certain laws and policies, or about what should be registered and
what should not. However, the most important statement in this cluster- which
states that the individual rights and privacy of the resident are not invaded- is also
an expression of the need for normative guidance.
Interpretation
Figure 1 (in combination with appendix 1) shows on the left side of the x-axis the
conditions to which the ideal application of ST should adhere in order to achieve
the goals stated on the right side of the x-axis. These goals are primarily those that
bear a relation to the effects on the individual resident. Under the y-axis are
statements that should be interpreted at a societal level. Similarly, above the y-axis
are statements made with regard to care within the nursing home. The y-axis thus
represents the continuum between the nursing home (i.e., internal) and society (i.e.,
external) while the x-axis represents the continuum between conditions and goals.
Looking at their position on the map, each distinct cluster corresponds most
thematically to the cluster which is in closest proximity. Accordingly, clusters 1 and
2 both appear to be about the (potential) effects of ST on the resident. Clusters 3
and 4 are similar in that they are both about the conditions for personnel to work
with ST. Clusters 5 (its application is reliable and monitored) and 6 (it is rightly
positioned within law and policy) also appear to share a mutual theme, namely, that
both ST and its related policies are regularly examined. Although in theory a
combination of both dimensions would lead to four typical ways of viewing ST in
an ideal way, the uneven distribution of the clusters suggests that the participants
appear to think in terms of three dimensions: 1. ST should be of benefit to and
respect the individual resident (clusters 1 and 2). 2. The personnel should be well
instructed and well trained (clusters 3 and 4). 3. People should account for the risks
of the system (clusters 5 and 6).
Difference between professional carers and academics
Of interest are the differences in prioritisation between the professional carers and
academics (table 2). One of the most significant differences is how safety and
freedom have been prioritised. Accordingly, two statements that are directly about
resident safety have been included in the top 10 by the professional carers (numbers
7 and 8), while the academics put these statements at numbers 38 and 43,
respectively. The experience of freedom, however, is listed as the number one
statement for the academics while the professional carers put this statement at
number 11.
Table 2. The 10 most important statements of the professional carers & academics
MEAN ITEM PREFERENCES (SORTED)
MEAN ITEM PREFERENCES (SORTED)
Professional carers
Academics
1
it is interwoven with the individual needs of
the resident
it contributes to the experience of freedom of
those concerned
2
residents are respected as human beings
it supports good care on an individual level
3
self independence is supported
The individual application is starting point
4
it supports good care on an individual level
it increases residents’ freedom of movement
5
it suits the individual living environment of
the residents
the resident can say ‘no thank you’
6
it increases the autonomy
it is not a replacement for human closeness
7
Guarantees the safety of the resident
people are aware that being able to monitor does
not lead to monitoring
8
it increases the safety of the resident
the care demand/care need is the basis of its use
(problem analysis)
9
the care demand/care need is the basis of its
use (problem analysis)
people will not walk into closed doors
10
it increases residents’ freedom of movement
it is regularly evaluated
DISCUSSION
This study shows that the ideal application of ST in the residential care of people
with dementia would entail that:
1. It provides a right balance between freedom and security.
2. It is beneficial and tailored to the individual resident.
3. There are clearly defined practical procedures.
4. It is used by competent and caring personnel.
5. It is actively monitored.
6. There is clear normative guidance.
Consequently, these clusters reflect the following three dimensions:
1. It should be of benefit to and respect the individual resident (clusters 1 & 2).
2. The personnel should be well instructed and well trained (clusters 3 & 4).
3. People should account for the risks of the system (clusters 5 & 6).
In other words, ST should not be implemented unless the end users are well trained
and truly understand how these technologies work, which also includes being aware
of the fact that all technology can be fallible. What is more, it should be clear who is
responsible when it does go wrong and there should be a clear benefit for the
resident when using these technologies, thereby being fundamentally responsive to
the interests of each individual resident.
The most important statement ‘it supports good care on an individual level’ shows
that ST is not something that should be applied collectively- for example, ‘equip
every room with a sensor and, while it is there, we might as well turn it on’. Rather,
technology should be suited and catered to each individual, with his or her specific
needs. This view is corroborated by the ethical literature where it is often stated that
technology should be person-centred (Plastow, 2006; Niemeijer et al., 2010).
With regard to the valuation of these six clusters, there appears to be a discrepancy
between the high valuation and elaboration of certain clusters. In other words, the
items valued as the most important have hardly been explained by participants. For
instance, despite the fact that finding the right balance between freedom and security
(cluster 1) is considered the most important aspect in the application of ST, the
cluster only contains two statements, which means that participants have elaborated
only minimally on this very important theme as far as they are concerned. This is
also the case with privacy. Even though (respect for) privacy is always named as a
key consideration when it comes to using ST (Welsh et al., 2003; Niemeijer et al.,
2010), in this concept mapping it has only been mentioned once. Similarly, with
regard to cluster 3, in stating that (pragmatic) procedures are desirable, participants
have again hardly elaborated on what these procedures should entail apart from the
fact that they should be clearly defined. It appears that it is very difficult for
participants to explain what a certain concept such as balancing freedom means, let
alone which procedures should follow suit.
What are the reasons for this? It could be that the concept mapping method might
not be the ideal method for expansion and might furthermore be susceptible to a
certain form of social desirability response bias. What is more, part of the technology
that was discussed is still in the experimental (i.e., theoretical) phase and has not yet
been applied fully, thereby making it hard for the study participants to expound.
Another explanation might be that the several ethical concepts to which participants
refer are very difficult to delineate, especially when it comes to applying them to the
context of a person with dementia. A central question then arises- namely, to what
extent do concepts such as autonomy, privacy and freedom retain any practical
value, particularly if these ethical concepts are never clearly defined?
If we take into account the differences in prioritisation between the two groups of
participants, the emphasis by the professional carer group appears to lie on safety
and that of the academic group on freedom. This would suggest that people who are
more involved directly with the care of residents (i.e., professional carers) are
inherently more concerned about the safety of residents than those who are involved
from a distance (i.e., the academics). In other words, how much does the ideology
of using technology in an ethically viable way (more freedom and/or autonomy)
differ from what carers actually want? Landau et al. (2010) found that caregivers’
views on the use of tracking technology change according to the locus of
responsibility for the safety of people with dementia. Caregivers gave preference to
patient safety more than autonomy when they were responsible for the patients.
However, when the patients were under the responsibility of other caregivers, they
gave preference to autonomy (Landau et al., 2010).
Consequently, our findings suggest a duality similar to Landau et al.’s findings as both
providing more safety and freedom are rated highly. With regard to ST in dementia
care, the safety versus freedom dichotomy has often been presented as an ethical
dilemma whereby safeguarding residents through the use of technology is perceived
as an encroachment on the freedom of the resident. However, this approach appears
to focus solely on what the consequences of technology would be on freedom as a
form of negative freedom- that is, the absence of (extraneous) interference or
meddling. This proves to be a difficult concept for carers because ‘care’ as an activity
consists inexorably as the opposite of ‘forbearance’ and in fact always contains an
element of meddling (Hertogh, 2005). It could be for this reason that finding the
right balance between freedom and security is seen as the top priority by all the
participants. However, as cluster 3 ranks higher than cluster 6, it would appear that
the need is greater for practical solutions in the form of concrete procedures rather
than the more theoretical (and abstract) normative guidance.
Our study has some limitations. As has been mentioned previously, there was a
difference in the number of participants between the professional carers and
academics (n=9 and n=6, respectively). This not only influenced the overall average
prioritisation- which will always be skewed towards the average prioritisation of the
larger group- but also influenced the differences in prioritisation between the groups.
This bottom-up dichotomy with a larger group of carers versus a smaller group of
academic thinkers was chosen because it was thought necessary to provide a
counterweight towards the group of (presumably more vocal) academic thinkers,
and also to avoid the swaying of opinion through reverence towards the academics
(Ellis et al., 2006). In addition, all individual participants were placed with each other,
which might have influenced the statements as participants will automatically tend
to react to each other. We could have opted to separate all participants, asking them
to finish the focus sentence on their own. However, this would have been too timeconsuming and might also have generated either too similar or too few results.
Reliability at each stage of the process is also a concern. Consequently, we view
concept mapping primarily as an exploratory method which can provide a starting
point to explore a topic in more detail and as a tool to assist in research, planning
and evaluation (Trochim, 1989). As De Ridder et al. (1997) have stated, concept
mapping is a method which can provide relevant insights but should ideally be
corroborated by similar results available from other studies. In view of this, it should
be noted that we did find very similar results with regard to categorisation and
prioritisation in an additional concept mapping session we conducted for the care of
people with intellectual disabilities (see chapter 4).
CONCLUSION
In conclusion, it is our opinion that, despite these limitations, this study provides
useful insights into creating the ideal conditions when applying ST to the care of
people with dementia. With regard to the views on using technology, there appears
to be an inherent duality rooted in the moral conflict between safety and freedom.
What is more, elaboration of this ethical issue has proved to be very difficult. In our
opinion this does not mean that these ethical concepts have become ineffectual
and/or obsolete in dementia care; certainly, respect for autonomy, for instance, has
often been invoked rightly as a safeguard against threats of paternalism. However, a
different approach to specific ethical concepts- including, for instance, a more
positive account of freedom- would be advisable. While the concept of negative
freedom refers to what healthcare professionals have to forbear in order to respect
the autonomy of the care recipient (the freedom of...), the concept of positive
freedom is more linked to what they have to do to facilitate and support care
recipients in their possibilities and remaining capabilities (the freedom to...)
(Hertogh, 2005). As the specific reality of care relationships is characterised by
asymmetry, vulnerability and dependency, it might be more helpful in the case of
people with dementia to allow a degree of what Agich (2003) calls ‘parentalism’:
‘Parentalism has its roots in a phenomenon essential to being a human personnamely, that a human person does not spring into being fully formed as an
independent agent but develops through psychosocial relations with human parents.
Parentalism signals the essential interconnectedness of all human persons and is
rooted in the basic response to the needy other that such relationships engender’
(Agich, 2003).
Ultimately, a further delineation of ethical concepts is desirable, where safety and
freedom are not viewed as antagonists but are unified in a positive account of
freedom where safety can be ensured. As the views of people with dementia (whom
the use of ST will most affect) and of family caregivers and cognitively intact elderly
were not included in this study, we recommend further ethical and empirical research
specifically focused on these perspectives.
Acknowledgements .The authors thank Ineke Kok and Kathy Oskam from the
Trimbos Institute for their technical advice and support regarding the Concept
Mapping method. Ineke Kok also chaired the concept mapping session.
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Chapter
4
The place of surveillance
technology in residential
care for people with
intellectual disabilities: is
there an ideal model of
application?
Niemeijer, A.R., Frederiks, B.J.M., Depla,
M.F.I.A., Eefsting, J.A. and Hertogh
C.M.P.M.
Published as: Niemeijer, A., Frederiks, B.., Depla, M., Eefsting, J, Hertogh, C. (2013). The
place of surveillance technology in residential care for people with intellectual disabilities: is
there an ideal model of application? Journal of Intellectual Disability Research, 57 (3): 201-15.
ABSTRACT
Background The demand for (care) services for people with intellectual disabilities (ID) is on
the rise, because of an expanding population of people with ID as resources are concurrently
diminishing. As a result, service providers are increasingly turning to technology as a potential
answer to this problem. However, use and application of surveillance technology (ST) in the
care for people with ID provokes conflicting reactions among ethicists and healthcare
professionals, with no ethical consensus as of yet. The aim of this study was thus to provide
an overview of how ST is viewed by (care) professionals and ethicists by investigating what
the ideal application of ST in the residential care for people with ID might entail.
Methods Use was made of the concept mapping method as developed by Trochim; a computer
assisted procedure consisting of five subsequent steps: brainstorming, prioritising, clustering,
processing by the computer, and finally analysis. Various participants were invited on the
basis of their intended (professional) background. Prior to this study, the views of care
professionals on the (ideal) application of ST in the residential care of people with dementia
have been consulted and analysed using concept mapping. A comparison between the two
studies has been made.
Results show that the generated views represent six categories, varying from it being beneficial
to the client; reducing restraints and it being based on a clear vision to (the need for) staff to
be equipped; user friendliness and attending to the client. The results are presented in the
form of a graphic chart. Both studies have produced very similar results, but there are some
differences, as there appears to be more fear for ST among care professionals in the care for
people with ID and views are expressed from a more developmental perspective rather than
a person-centred perspective with regard to people with dementia.
Conclusions When it comes to views on using ST both in dementia care and the care for people
with ID, there appears to be an inherent duality, often rooted in the moral conflict between
safety versus freedom or autonomy. Elaboration on abstract concepts often presumed to be
self-evident has proven to be difficult. How ST is viewed and apprehended is not so much
dependent of the care setting and care needs, but rather whether it is clear to everyone
affected by ST, what one wants to achieve with ST.
INTRODUCTION
W
ith various population trends showing increasingly ageing societies,
many foresee a mounting problem in populations who are becoming
ever more dependent. It is in this context of relatively stagnant and/or
diminishing resources, that the demand for (care) services for people with
intellectual disabilities (ID) is on the rise, as a result of an expanding population of
people with ID (Perry et al., 2009). In order to deal with this ‘demographic time
bomb’, part of the answer might lie in technology (partly) taking the place of human
supervision (Alisky, 2006).
However, it is often in relation to people with cognitive impairment or ID that the
use of technology can provoke conflicting reactions among ethicists and healthcare
professionals (Cash 2003). In particular those forms of technology which can be
used to for surveillance and effective management of high risk behaviour. In one
regard, there are those who have stressed that the use of ST might not only create a
more secure environment (thereby reducing carer stress), but also increase liberty
and dignity if compared with a policy of incarceration (Hughes and Louw 2002; Bail
2003; Welsh et al., 2003). In another regard, it has been perceived as either an
infringement on human rights, or as contrary to human dignity, as it can reduce
privacy and removes personhood (Astell 2006; Cahill 2007; Perry et al., 2010), not to
mention its potentially stigmatising effects (Parette and Scherer 2004; Perry et al.,
2010).
What is more, care facilities are increasingly (considering) putting ST to use, despite
there not being any clear ethical consensus and/or normative guidelines with regard
to the use and application of ST (Niemeijer et al., 2010).
This present study is part of a multi-step research project on the ethics of ST in the
residential care for people with dementia and people with ID. The goal of this
research is to develop a multidisciplinary guideline for the responsible and
individualised application of ST in the care for people with dementia and people
with ID, also as an alternative to physical restraints. Prior to this study, the views of
care professionals on the (ideal) application of ST in the residential care of people
with dementia have been consulted and analysed (Niemeijer et al., 2011) through the
method of concept mapping.
The use and application of ST raises very similar ethical issues in people with
dementia and ID (Welsh et al., 2003; Perry et al., 2009; Niemeijer et al., 2010). This is
reflected in the fact that in several European countries, for example the Netherlands,
there exists one judicial framework that pertains to the rights of both
(institutionalised) groups. However, we have chosen to conduct separate sessions
for each group, as any differences in results between each group might lead to new
and relevant insights and similar results will corroborate previous findings. The main
aim of this article is thus to investigate, using the method of concept mapping, what
the ideal application of ST in the residential care for people with ID might entail.
METHOD
Concept mapping
The concept mapping method combines quantitative and qualitative methodologies
and was developed by Trochim (1989). It is a computer-assisted procedure that
enables a divergent group of 10–20 experts to elucidate a complex subject in a short
amount of time and directs participants from concrete statements to more abstract
concepts, thereby conveying both different and correlative aspects of a given subject.
The use of concept mapping is well established and has been applied to many topics
in (mental) health care (Shern et al., 1995; De Ridder et al., 1997; Johnsen et al., 2000;
Brown, 2004). The concept mapping session took place under the supervision of an
independent chair from the Trimbos Institute who is specialised in working with the
concept mapping method.
Participants
The researchers invited two categories of experts: professional carers (n = 9) and
academics (n = 6). The aim here was to hear from a group of direct users of ST what
their views are on working with these technologies, and from a group of academics
more familiar with the ethical aspects which can arise with the application of ST.
They were approached through consultation conferences and the advisory
committee of this research project which consists of varying professionals from
within the field. Finally there were 15 participants, namely 2 ID physicians, 2
developmental psychopathologists, 2 ethicists (academics), 4 personal coaches and
5 support workers (professional carers). The participants (save from the ethicists)
worked both in small-scale establishments and in larger-scale residential scare.
Procedure
The method has been described in more detail in our previous study (Niemeijer et
al., 2011) and consists of five steps. The first step (brainstorm) entailed the participants
being requested to make statements in response to the following sentence: ‘The ideal
application of ST in the (residential) care for people with ID would entail that . . .’
Participants could make statements freely, but were not allowed to engage in any
discussion unless statements needed to be clarified. Step two (prioritising) and three
(clustering) had to be carried out individually whereby step two consisted of arranging
all the statements in order of importance. The statements had to be divided evenly
into five categories, ranging from the least important (1) to the most important (5).
For the third step (clustering), participants grouped the responses together which in
their view, were compatible with regard to content.
This is where the participants’ active involvement ended and where the researchers
continued the fourth and fifth (final) step. During step four (processing), a special
computer programme combined all the individual arrangements of step two and step
three into a ‘group product’ which has the shape of a so-called concept map. Statements
were joined together in clusters of interrelatedness, which were in close proximity
of each other on the land map. The value of each cluster was subsequently calculated,
on the basis of the average score of the priorities (step two) that the participants had
allocated towards each statement of the cluster. In the fifth and final phase
(interpretation) the land map was interpreted by the researchers in a separate research
meeting. Each cluster was named and the axes were given a signification (see Fig. 1).
The result is a visual representation of the conceptualisation process.
RESULTS
Brainstorm and prioritising
The focus sentence ‘The ideal application of surveillance technology (ST) in the
(residential) care for people with intellectual disabilities (ID) would entail that . . .’
was completed 53 times (see Appendix 1). The 10 statements that were given the
highest priority are listed in Table 1. These statements all bear relation to the effects
on the client, whereas other aspects such as the functioning of the system, the role
of the family or the effects on the personnel were given lower prioritisation.
Analysis of the clusters
Based on the sorting of the 53 statements, the following six clusters were created in
step four of the concept map procedure (in order of priority):
Cluster 1: It supports and enhances the capabilities of the client (3.8)
This cluster consists of 19 statements and was considered the most important cluster
by the participants. Eight of the 10 most important statements are in this cluster.
This cluster reflects the view that ST should not only be meant as a cost effective
solution towards shortages in care services, but ideally should lead to improvements
for the quality of life and care of and for the client. This is reflected in the terms
used in the following statements: ‘safety of the client should be improved’; ‘it improves
the autonomy of the client’ and ‘it increases/ improves the individual living environment
of the client’. The name of this cluster, how ST can support and enhance the
capabilities of the client, and increase his or her agency, is indicated by the following
terms: ‘control’ (of the client), ‘autonomy’, ‘development’, ‘assistance’ and ‘independence’.
Although safety of the client is only mentioned twice, it is regarded as the most
important statement of the cluster. Safety can then be regarded as a precondition for
clients to fulfil their capabilities. In order to ensure that the capabilities are
guaranteed, ST should thus be of (some) benefit for the client. In addition, attention
should be made towards providing better care, which is indicated through the
statements ‘it helps to improve the general care’ and ‘it also enhances personal care’.
Cluster 2: It contributes to the reduction of other freedom restrictions/ restraints
(3.6)
This cluster has five statements where the emphasis lies on the fact that ST should
serve either as an alternative to (forms of) freedom restriction, or directly reduce
restrictive measures. Freedom restriction is not clearly defined here, although it
appears that this is generally viewed as a restriction of (freedom of) movement,
which the statement ‘fewer doors are locked’ seems to illustrate. Significantly, the
(most important) statement ‘it leads to a reduction of other freedom restrictions’
implies that ST is also seen as a form of freedom restriction. Cluster 2 differs from
cluster 1 because rather than being on an individual level, these statements are
formulated as policy goals and should accordingly be interpreted as being on the
dimension of the care provider.
Figure 1. Concept map: the ideal application of surveillance technology in
residential care for people with intellectual disabilities
Cluster 3: It is based on a vision on its benefits and risks (2.7)
With regard to priority this cluster scores significantly less (2.7) in comparison with
the first two clusters (3.8 and 3.6). It consists of 18 statements which are
predominantly about the fact that the application of ST is based on a clear vision on
its benefits and risks. The fact that ST should be based on vision, is best reflected in
the statement ‘there is a clear vision in the institution upon which the application of
ST is formulated’. But also the statement that ‘it is clear what the expectations and
possibilities of ST are’ indicates a need for a vision. However, a vision which
encompasses both benefits and risks. This is reflected in the statements and ‘there
should be a good cost benefit analysis’ and also ‘there is a good feedback system
within the organisation regarding the functioning and effectiveness of ST’. There is
a need for a clear framework for everyone with regard to the procedures and
responsibilities when it does go wrong, therefore ideally a vision is entrenched in
some form of policy, thereby guaranteeing and or safeguarding the functioning of
ST. This is for instance reflected in the statement which states that ‘it is well
described in the individual care plans’. But also terms such as ‘reliable’, ‘functioning is
guaranteed’, ‘evidence based’, ‘protocol’, ‘feedback system’ and ‘emergency plan’ indicate the need
for both a procedural and technical underpinning in order to make ST as reliable as
possible. Next to this, certain statements imply a certain fear of ST failing as a
system, or worse, that the system would take over personal care duties. In other
words, it is in no way evident that everything will function well automatically, so we
should remain responsible for the daily care of the clients.
Table 1. The 10 most important statements of the concept mapping session
MEAN ITEM PREFERENCES (SORTED)
Item
(Pref.; Standard deviation)
1
the client feels safe
(4.35; .82)
2
it increases the independence of the client
(4.35; .58)
3
it improves the safety of the client
(4.35; .82)
4
it is supportive/assistive in the life of the client
(4.35; .93)
5
it increase/improves the individual living environment of the client
(4.35; 1.17)
6
it improves the attendance to individual care requirements
(4.29; 1.27)
7
it improves the development of the client
(4.24; 1.24)
8
it reduces other freedom restrictions
(4.24; 1.24)
9
one can respond faster and more directly to client needs
(4.18; .73)
10
it is the least intrusive alternative to a necessary care-based restraint
(4.00; 1.18)
Cluster 4: Staff are equipped to work safely with ST (2.6)
This cluster has seven statements which bear relation to the interaction between staff
and ST, in particular the fact that care staff are people who need to feel familiar and
safe working with these new technologies. The most important statement
consequently states that ‘staff who apply ST should be sufficiently equipped and
educated’. That the statements in this cluster imply that trustworthiness is the central
issue is indicated through the statements ‘staff should feel safe’; ‘it increases the
safety of staff’, but also that there should be ‘commitment’ among staff and that the
impact of ST for staff should be clarified. The statement that there should be
safeguards against ‘the big brother feeling among staff’ can be explained as a feeling
that you are being monitored too much. This might also be construed as a certain
fear for the system; however, this is a different kind of fear compared with cluster
3.
Cluster 5: It is user-friendly (2.5)
This cluster contains only one statement which states that the ideal application of
ST would entail that it is accessible and user-friendly. Accessibility here can thus be
interpreted as a form of user friendliness. Even though this statement could have
been added to cluster 4, it was not clustered as such by the participants. This might
be explained by the fact that the emphasis of this statement lies with the technology
itself rather than the interaction between staff and technology.
Cluster 6: It can attend to the client (2.3)
All the three statements which can be found in this cluster are statements about the
fact that the use of ST should not be dependent on the institution. This is reflected
in the statements that ST should be easily movable/mobile and that it should be user
friendly for the family of the client. What is more, the most important statement
states that ‘the advantages should be well communicated to everyone in the client’s
environment’. In other words, ST should be suited to the individual client, in any
given circumstance.
Interpretation
Figure 1 (in combination with Appendix 1) shows that on the left side of the x-axis
we find statements that should be interpreted from an institutional level. Similarly
on the right side of the x-axis, statements are made with regard to (care for) the
client. Under the y-axis the statements are about conditions: these are the conditions
that the ideal application of ST should adhere to, in order to achieve the goals as
stated above the y-axis. These goals are either ends that bear relation to the effects
on the individual client or ends that bear relation to the institution. In this concept
map the ideal application of ST is typified by the dimensions means-ends (y-axis)
and client-institution (x-axis). The clusters are not evenly distributed across the
dimensions as one quadrant (conditions ↔ client) does not contain any clusters.
This would suggest that the participants appear to think in terms of three
dimensions:
1 The client, for whom it should be of benefit (cluster 1 and 2);
2 The institution, which has to develop a clear vision on ST (cluster 3); and
3 The end-users, for whom it should be safe, practical and useable (cluster 4, 5, 6).
Difference between professional carers and academics
Of significance are the differences in prioritisation between the professional carers
and academics (Table 2). One of the most notable differences is how safety and
autonomy have been prioritised. Accordingly, the two most important statements
prioritised by the professional carers are directly about client safety, as opposed to
the academics, where these statements can be found back on the 11th and 17th
position respectively. The improvement of autonomy, however, is listed as the
number one statement for the group of academics, as opposed to the professional
carers, where this statement can be found on the 30th position.
Table 2. The 10 most important statements of the professional carers and academics
MEAN ITEM PREFERENCES
(SORTED)
MEAN ITEM PREFERENCES (SORTED)
PROFESSIONAL CARERS
ACADEMICS
1
It improves the safety of the client
It improves the autonomy of the client
2
The client feels safe
It is supportive/assistive in/of the life of the
client
3
It reduces other freedom restrictions
It increases the independence of the client
4
It increases the independence of the client
It increases/improves the individual living
environment of the client
5
it improves the attendance to individual
care requirements
It improves the development of the client
6
It increases/improves the individual living
environment of the client
It improves the life of the client in a social
context
7
It is supportive/assistive in/of the life of
the client
It leads to an improvement in attending to the
individual care requirements
8
It improves the development of the client
One can respond faster and more direct to client
needs
9
One can respond faster and more direct to
patient needs
Control remains with the client as much as is
possible
10
It replaces fixation and other forms of
restraint
It is the least intrusive alternative to a (carebased) necessary restraint)
DISCUSSION
This study shows that the ideal application of ST in the residential care of people
with ID would entail that . . .:
1 . . . it supports and enhances the capabilities of the client;
2. . it contributes to the reduction of freedom restrictions/restraints;
3 . . . it is based on a vision on its benefits and risks; and
4 . . . staff are equipped to work safely with ST;
5 . . . it is user-friendly; and
6 . . . it attends to the client.
Consequently, these clusters reflect the following three dimensions:
1 The client, for whom it should be of benefit (cluster 1 and 2);
2 The institution, which has to develop a clear vision on ST (cluster 3); and
3 The end-users, for whom it should be safe, practical and useable (cluster 4, 5, 6).
In other words, ST is not merely a matter of ordering devices and having them
installed. The institution should give serious consideration as to what they want to
achieve with ST and personnel should be familiarised with the system. Finally, there
should be an obvious benefit for the client when using these technologies, thereby
respecting the autonomy of the client and guaranteeing his or her capabilities.
The most important statement in cluster 1, ‘the client feels safe’ shows that it is not
only important that ST is empirically safe, but that the client experiences it to be safe.
A GPS bracelet might work successfully and increase someone’s freedom of
movement, but if the client feels threatened and/or stigmatised by wearing it then it
is not clear what the actual benefit of the bracelet would be. For instance, one study
interviewed people with dementia who felt that the use of electronic tracking devices
actually placed them at greater risk, that is, as a target to theft, or could be
embarrassing if they omitted a noise when out in public (Robinson et al., 2007).
Interestingly it is not only the client who has to feel safe, as cluster 4 also indicated
the desire for staff themselves to feel safe working with ST. And safety remains an
important issue in cluster 3 where there is a clear need for both a procedural and
technical underpinning in order to make ST as reliable as possible. However, in order
to achieve this, it must be clear from the outset what the (perceived) benefits and
risks of ST are.
Surveillance technology: a form of restraint?
The statement ‘it leads to a reduction of other freedom restrictions’ in cluster 2
implies that participants view ST as a form of freedom restriction. This raises the
interesting normative question whether ST can be considered a restraint in itself.
Certain legislation, such as in Austria, is clear on this, namely that intrusive forms of
electronic devices that impede freedom of movement are considered as a restriction
(HeimAufG, 2011). Others view ST a ‘soft restraint’ compared with harder forms
of traditional restraint such as fixation (De Jong & Kunst, 2005). Viewed from this
perspective, ST is then often envisaged as a potential and more desirable alternative
to (other) forms of freedom restriction (cluster 2). But it is questionable whether ST
truly leads to a reduction of restraints. A recent study in the Netherlands regarding
the feasibility of ST as an alternative to physical restraints in the residential care for
people with dementia, showed that professionals consider ST supplemental to
physical restraints, rather than a complete alternative. ST was viewed as having
inherent limitations, as it does not prevent falling, it cannot guarantee quick help, it
does not always work properly, and it could violate privacy (Depla et al., 2010;
Zwijsen et al., 2012).
Minimal elaboration
Looking at cluster 5 and 6 which are both about (practical) usability, the participants
have elaborated minimally on what usability should entail, as the clusters combined
only contain 4 statements. This is also the case with privacy. Even though (respect
for) privacy is always named as a key consideration when it comes to using ST (Welsh
et al., 2003; Niemeijer et al., 2010; Perry et al., 2010; Zwijsen et al., 2011) in this
concept mapping it has only been mentioned once. The reason for this minimal
elaboration could be as a result of the fact that when it comes to certain terms, they
are often presumed to be self-evident in their meaning.
This is for instance the case when discussing technology, as a term such as usability
is frequently assumed to be clear in its meaning, whereby it is often associated with
the functionalities of a device. In other words, if a device functions well, then it is
useable. However, Franssen et al. (2010) point to the notion of malfunction, which
sharpens an ambiguity in the general reference when characterising technical devices.
Technical devices usually engage many different people, and the intentions of these
people may not all pull in the same direction. From a design point of a view, this
means that a major distinction must be made between the intentions of the actual
user of a device for a particular purpose and the intentions of the designer of the
device (Franssen et al., 2010). In order for something to become useable, it must first
be used by the user who it is intended for, not merely designed as such. Therefore,
a more person-centred approach, whereby ST is catered and suited to each different
individual, seems of the utmost importance.
Comparison with previous study
If we take into account the differences of prioritisation between the two groups, the
emphasis by the professional carer group appears to lie on safety and that of the
academics group on autonomy. A very similar result was seen in our previous study
regarding ST use in residential care for people with dementia, where the emphasis
in the professional carer group also was on safety, and that of the academics group
on freedom. It was argued that people who are more involved directly with the care
of residents or clients (i.e. the professional carers) are inherently more concerned
about the safety of clients than those people who are involved more from a distance,
that is, the academics (Landau et al., 2010; Niemeijer et al., 2011).
As with this study, there was also minimal elaboration on concepts such as privacy
in the study for people with dementia, despite the fact that it is often raised as a
significant concern. Other similarities between the findings of both studies include
the thematic nature of the clusters. This can best be demonstrated by looking at the
three dimensions of these clusters of both studies:
People with ID:
1 The client, for whom it should be of benefit (cluster 1 & 2);
2 The institution, which has to develop a clear vision on ST (cluster 3); and
3 The end-users, for whom it should be safe, practical and useable (cluster 4, 5, 6).
People with dementia:
1 It should be of benefit and respect the individual resident (cluster 1 & 2);
2 The personnel should be well instructed and well trained (cluster 3 and 4);
3 People should account for the risks of the system (cluster 5 and 6) (Niemeijer et
al., 2011).
The first dimension of both studies are strikingly thematically correspondent. The
other dimensions also appear to share similar themes. When it comes to views on
the application of ST it appears that it is not so much of interest what the care setting
is, but rather that it is obvious what one wants to achieve with this technology. In
other words, the reasons for using technology should be straightforward both for
the client (for whom it should be of benefit), as to personnel (for whom it should
be familiar and safe to work with).
Although both studies have produced very similar results, there are some
differences. Looking more closely at the statements it emerges that with regard to
people with ID views are expressed from a more developmental perspective (one
statement literally states that ST ‘should increase the development of the client’) and
with regard to people with dementia from a more person-centred perspective. This
is not unsurprising, as ID are often more associated with developmental delay rather
than progressive neurodegenerative disease in the case of dementia (Putnam, 2007).
What is also significant is that in this study there appears to be a certain fear for ST,
as was discussed above, both for the failing of the system as the monitoring of staff.
This fear was found absent in the study for people with dementia. One possible
explanation for this might be that in the Netherlands use of ST is more widespread
in the care for people with ID (Willems and Willems, 2007).
Limitations
With regard to the limitations of this study, some critical remarks must be made
regarding the method of concept mapping. Firstly, as in the previous study, there
was a numerical difference between the groups: professional carers and academics
(n = 9 vs. n = 6 respectively), thereby influencing both the overall average of
prioritisation and the differences of prioritisation between the group. However, this
arrangement was deliberately chosen for both studies as it was thought necessary to
provide a counterbalance towards the group of (presumably more vocal) academic
thinkers, and also to avoid the swaying of opinion through reverence towards the
aforementioned academics (Ellis et al., 2006). Even though the cluster ‘the reduction
of other freedom restrictions/restraints’ was ranked the as the second most
important cluster, it might have been ranked lower if all participants worked in smallscale-community-based settings. However, we chose to invite participants from
several different settings in order to be as representative as possible.
Reliability at each stage of the process can also be viewed a concern. Accordingly,
we would like to reiterate here that we view concept mapping primarily as an
exploratory tool which can aid in research and planning and provide a starting point
to explore a topic more elaborately (Trochim 1993). As De Ridder et al. (1997) have
stated, concept mapping is a method which can provide relevant insights, but should
ideally be corroborated by similar results available from other studies. Although the
vulnerability in this method lies in a lack of generalisation possibility, as both studies
did show corresponding results we hope to have counterbalanced this by achieving
corroboration between the two studies.
CONCLUSION
In conclusion, it is our opinion that despite these limitations, this article provides
useful insights when it comes to creating the ideal conditions when applying ST in
the care for people with ID. As both of our studies have shown, when it comes to
views on ST, there appears to be an inherent duality, rooted in the moral conflict
between safety and freedom or autonomy. What is more, elaboration on abstract
concepts often presumed to be self-evident, whether ethical or not, has proven to
be difficult. How ST is viewed and understood is not so much dependent of the care
setting and care needs, but rather whether it is clear to everyone affected by ST, what
one wants to achieve with ST. By presenting these results we hope this might provide
some key elements with regard to the broad felt need of developing clear(er) policies
concerning the use of ST. Ideally any guideline regarding the use and application of
ST in the residential care for people with dementia and/or ID is not merely focused
on the safety, efficiency and practicalities of working with ST, but takes into account
that application of ST should primarily be about benefiting the client. As the views
of people with ID whom the use of ST will most affect, and of family caregivers
were not included in this study, we recommend further ethical and empirical
research, specifically focused on these perspectives.
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Chapter
5
Exploring benefits
and drawbacks of
surveillance technology:
An ethnographic fieldstudy of the practice of
nurses and support staff
in residential care for
people with dementia or
intellectual disabilities
Niemeijer, A.R., Depla, M.F.I.A.,
Frederiks, B.J.M., Francke, A.J. and
Hertogh C.M.P.M.
Published as: Niemeijer, A.R., Depla, M.F.I.A., Frederiks, B.J.M., Francke, A.J. and Hertogh
C.M.P.M. (2014). The Use of Surveillance Technology in Residential Facilities for People
with Dementia or Intellectual Disabilities: A Study among Nurses and Support Staff.
Exploring Benefits and Drawbacks. American Journal of Nursing, 114, 12: 38-47.
ABSTRACT
Background The use of surveillance technology in residential care facilities for people with
dementia or intellectual disabilities is often promoted both as a solution to understaffing and
as a means to increasing clients’ autonomy. But there are fears that such use might attenuate
the care relationship.
Aim To investigate how surveillance technology is actually being used by nurses and support
staff in residential care facilities for people with dementia or intellectual disabilities, in order
to explore the possible benefits and drawbacks in practice.
Method An ethnographic field study was carried out in two residential care facilities: a nursing
home for people with dementia and a residential care facility for people with intellectual
disabilities.
Results Five overarching themes on the use of surveillance technology emerged from the data:
continuing to do rounds, alarm fatigue, keeping clients in close proximity, locking the doors,
and forgetting to take certain devices off. Despite the presence of surveillance technology,
participants still continued their rounds. Alarm fatigue sometimes led participants to turn
devices off. Though the technology allowed wandering clients to be tracked more easily,
participants often preferred keeping clients nearby, and preferably behind locked doors at
night. At times participants forgot to remove less visible devices (such as electronic bracelets)
when the original reason for use expired.
Conclusions A more nuanced view of the benefits and drawbacks of surveillance technology is
called for. Study informants tended to incorporate surveillance technology into existing care
routines and to do so with some reluctance and reservation. They also tended to favor certain
technologies, for example, making intensive use of certain devices (such as DECT phones)
while demonstrating ambivalence about others (such as the tagging and tracking systems).
Client safety and physical proximity seemed to be dominant values, suggesting that the fear
that surveillance technology will cause attenuation of the care relationship is unfounded. On
the other hand, the values of client freedom and autonomy seemed less influential;
informants often appeared unwilling to take risks with the technology. Care facilities wishing
to implement surveillance technology should encourage ongoing dialogue on how staff
members view and understand the concepts of autonomy and risk. A clear and wellformulated vision for the use of surveillance technology—one understood and supported by
all stakeholders—seems imperative to successful implementation.
INTRODUCTION
T
he proportion of older adults in the world’s population continues to rise, with
some experts predicting it will reach 22% by 2050, (WHO, 2012) and in many
countries this is contributing to a “care vacuum.”(Astell, 2006). Residential longterm care facilities are faced with the challenges of caring for expanding numbers of
people with dementia or intellectual disabilities— while simultaneously dealing with
workforce shortages (Astell, 2006). In light of these developments, health care
professionals are turning to technology for help, in particular surveillance devices and
systems that can monitor and safeguard residents from harm, such as that caused by
wandering, excessive locomotion, and hyperactivity (Hope et al., 1994; Robinson et al.,
2007).
The use of surveillance technology — electronic equipment that allows the visual and
acoustic monitoring of people or registers their activities (or both), (Frederiks et al., 2009;
Boekhorst et al., 2013) — could be a potential solution, aiding or replacing human
supervision and reducing staff stress (Niemeijer et al., 2010). Another perceived benefit
of this technology is that it could increase clients’ freedom and autonomy, preserving
their safety while serving as an alternative to the more physical forms of restraint
traditionally used to manage wandering (Wigg, 2010; Boekhorst et al., 2013; Zwijsen et
al., 2012).
Several forms of surveillance technology have already been designed for and tested
among people with dementia and other cognitive impairments (Boekhorst et al., 2009;
Bharucha et al., 2009). These include video and audio monitoring devices, environmental
sensors (such as motion sensors) that can send alerts to staff, tagging systems that use
wearable transmitters, and tracking systems that use the Global Positioning System
(GPS) (Boekhorst et al., 2009). Indeed, in a report published in 2009, the Dutch Health
Inspectorate estimated that 91% of residential care homes for people with dementia or
intellectual disabilities in The Netherlands were using some form of surveillance
technology (Dutch Health Inspectorate, 2009). It cited reduced workloads for staff and
more autonomy for clients as reasons for application.
But while many policymakers and providers welcome surveillance technology’s potential
benefits, it’s not known whether it fulfills its promises in practice. Moreover, there are
potential drawbacks to its use. Some ethicists and patient advocacy organizations fear
that surveillance technology could attenuate the care relationship if it’s used as a
substitute for comprehensive patient care or human contact—a particular concern with
regard to vulnerable people for whom human contact is viewed as indispensable
(Alzheimer’s Society, 2013; Hughes JC et al, 2008; Hughes R, 2008; Perry et al., 2008).
Similar concerns have been expressed by professional caregivers, who understand the
role of human contact and connection in providing optimal care (Niemeijer et al. 2011;
Sävenstedt et al., 2006), and fear that technology could lead to “dehumanized” care
(Sävenstedt et al., 2006). And as Hughes et al noted, there are concerns that the use of
surveillance technology “might distract organizations from the need to provide more
staff and better training” (Hughes et al., 2008). Moreover, the introduction of new
technology could create new risks, such as false positive alarms, increased alarm fatigue,
and equipment failures (Perry et al., 2008; Schikhof & Mulder, 2008); and addressing
those issues might increase the demands on staff time (Zwijsen et al., 2012).
In reviewing the literature, we found scant research exploring how the envisaged benefits
and drawbacks of surveillance technology take shape in practice. To learn more, we
decided to conduct an ethnographic field study on the ethics of using surveillance
technology in residential care facilities, which had two aims:

to investigate how surveillance technology is actually being used by
nurses and support staff in long-term residential care facilities for
people with dementia or intellectual disabilities, in order to explore the
possible benefits and drawbacks of surveillance technology in practice;
and

to explore how clients in such facilities experience and make use of the
possibilities that surveillance technology offers, in order to assess
whether and how surveillance technology might increase the client’s
autonomy.
In another article, we report our findings on the experiences of clients (Niemeijer et al.,
2014). Here we report on our findings with regard to nursing and support staff.
METHODS
Design
An ethnographic design was chosen, which involved observing informants and
conducting formal and informal interviews with them to gather data. Observing
study informants allows researchers to reach a more thorough understanding of both
the informants and the culture of the research setting, as it enables researchers to
observe behaviors occurring in their usual environment. And good insights can be
gained into the local or contextual logic of a care practice. “Local logic” has been
described as the manner in which the daily actions of caregivers in their work settings
occur within a set of considerations that aren’t always in accordance with theoretical
norms, existing policies, or projected ideals and goals (Hak et al., 1997).
Settings
Because the Netherlands has one judicial framework that pertains to the rights of
both of these institutionalized groups, specifically with regard to freedom restriction
and surveillance technology, two different residential settings were chosen. One was
a dementia special care ward (43 clients) in a nursing home in the north of Holland;
the ward consisted of six small-scale living units and one large-scale living unit. The
other setting was a residential care facility for people with intellectual disabilities in
the southwest of Holland; here research was conducted in four small-scale living
units (28 clients). Two of these units housed clients ages 45 and older who had severe
intellectual disabilities or dementia or both and two units housed clients between the
ages of 18 and 40 who had moderate to severe intellectual disabilities. (See Table 1).
Both settings were selected based on the following criteria: they used multiple forms
of surveillance technology; surveillance technology was used as an alternative to
other means of physical restraint; and the responsible application of surveillance
technology was integral to their care policies (the nursing home had a specific
surveillance technology protocol; the other care facility had a special committee for
restraints, including surveillance technology).
Ethical issues
People with dementia or intellectual disabilities may not be able to give valid
informed consent to participation in research. This was the case in our study.
Therefore, the researcher (ARN) was specifically instructed by the management of
both facilities to stop gathering data if a client showed any signs of stress or
disapproval of our presence. All family members and proxies were informed of the
research study through information leaflets and gave their consent to the study. A
preliminary informational meeting about the study was held at each facility for staff.
All staff on the participating units were asked twice for to provide consent for their
involvement in the study. First, during the preliminary informational meetings, all
staff present were asked whether they objected to participating. Nobody objected.
Second, during the course of the study, a few days before each shift in which the
researcher (ARN) was scheduled to conduct research, staff members were
individually approached by their supervisors and were again asked to provide
consent. During the whole study, only one nurse assistant objected, stating that she
preferred not to have someone “looking directly over her shoulder,” and
Table 1: Characteristics of selected care facilities.
Facility characteristics
Dementia care unit in
nursing home
Care facility for people
with ID
Area
Semi-rural
Urban
Number of units (where
research took place)
7 in total: 6 small scale units + 1
large scale unit (all in 1 location)
4 residential small scale units
Number of nursing and
support staff involved in
the study
22 in total: 6 registered nurses;
11 nurse assistants; 5 nurse aides
16 in total: 14 support
workers; 2 trainee support
workers
Number of clients (who
were involved in the study)
43 in total (6 clients per small
scale unit, 13 clients in the large
scale unit)
28 in total (7 clients per
residential unit)
Order for ST
Given by team supervisor and
elderly care physician in
consultation with family or
proxy
Given by team manager, ID
physician and psychologist in
consultation with client or
family or proxy
Physical restraints used
Nursing blankets, bedrails,
wheelchair table tops and safety
belts in the wheelchair, locked
doors
nursing blankets, bedrails,
safety belts in the
(wheel)chair, seclusion areas,
locked doors
consequently a different shift was found for the researcher. The boards representing
clients and their relatives or proxies were also formally asked to give their approval,
as were the management teams of both facilities. Once all of these steps had been
completed, the Medical Ethics Committee of the VU University Medical Centre gave
final authorization for the study. All data were anonymized in order to ensure
confidentiality of all informants.
Surveillance technology devices
Table 2 provides an overview of the surveillance technology devices being used in
the research settings. Most devices were used in both facilities, with the exception
of acoustic surveillance and GPS technology, which were only used in the residential
care facility for people with intellectual disabilities.
Table 2: ST devices and their use in the selected care facilities
Device
Use
DECT phone
Each nurse or support worker was equipped with a DECT phone,
enabling them communicate with each other and to ‘listen in’ on any
room of their unit. An alarm on the DECT phone could be triggered
by acoustic or motion sensors which were present in each room. In
the dementia care unit (DCU) the DECT phone was used 24 hours
per day, in the care facility for people with ID (CFID) only during
the day and evening shifts, but not during the night.
Movement sensor(s)
Depending on each individual case, these were switched on or off in
the client’s bedroom.
Acoustic sensor(s) and
acoustic surveillance
In the DCU, depending on each individual case these were
switched on or of. There was no central surveillance, but
signals went directly to the DECT phones. In the CFID, all
the clients were under audio surveillance during the night
from a central location. The room sensors transmitted sounds
to a computer, and a night nurse listened through headphones.
Electronic bracelets
In the DCU, 8 clients wore electronic bracelets to which the
electronic, automatic doors were programmed to respond..
The bracelets allowed the clients to walk within specific areas
with set parameters, known as ‘living circles’. There were 3
living circles: the small scale living unit, the hallway that led to
the units and an extra walking area. Each client was assigned
to a specific living circle or circles. In the CFID 4 clients
within the residential facility wore bracelets which only
opened to 1 extra-large corridor, outside the living unit.
Automatic doors
Each door had an access code that was know only to staff and
regular visitors. But the doors would open to those clients
with electronic bracelets.
GPS tags
In the CFID 2 clients had a GPS tag, which was sewn into
their coats. Each tag was linked to the staff computer in the
office area of the living unit. The tags allowed clients to walk
around outside on their own, on the facility grounds.
Video surveillance
In the DCU a camera was used in the hallway connected to a
monitor of the night nurses’ station. In the CFID, individual
cameras could be placed in clients’ rooms, and be monitored
from a central location. During the study, one CFID client
with severe epilepsy received camera surveillance during the
night.
Data-collection
Data were collected by the first author (ARN) during two different periods: from
April 2010 to July 2010 in the nursing home and from November 2010 to February
2011 in the care facility for people with intellectual disabilities. During both periods,
the researcher (ARN) had informal conversations with numerous key informants,
including nurses and support staff, physicians specializing in intellectual disabilities
and elder care, and all other professionals he encountered, as well as clients and
families. The informal conversations were intended both to afford a better
understanding of staff experiences with surveillance technology and to clarify what
had just been observed. The researcher also conducted eight formal interviews in
the nursing home and five formal interviews in the care facility for people with
intellectual disabilities. The formal interviews each lasted from between 45 minutes
to an hour and were transcribed verbatim. The interview guide was based on the
researcher’s field notes. It was designed to allow key informants to add meaning to
the researcher’s observations; to elicit their perceptions about working with
surveillance technology; and to offer them opportunity to elaborate on the meanings
they gave to their own actions in certain situations as well as the meanings they
thought that others gave. See Table 3 for more details on data collection. Field notes
included not only the researcher’s observations but also his reflective comments and
information from clients’ care plans, which he was given temporary onsite access to
in both care settings.
Data analysis
Data analysis took place during the same time periods as data collection and involved
the constant comparison method developed by Glaser and Strauss (Glaser & Strauss,
1967). The data were first read in order to refine the research question and guide
further data collection; then the data were re-read for the purposes of searching for
and identifying patterns; then the data were compared and analyzed for differences
and similarities (Glaser & Strauss, 1967; Corbin & Strauss, 2008). Thus the field
notes and the interview transcripts were first coded concurrently, using open codes
and writing initial memos. After identifying relevant core themes, focused coding
was conducted with the second author (MD), using integrative memos, elaborating
on ideas and linking codes and data to each other, in order to allow categories to
emerge. To examine for variance and consistency among these categories,
contrasting examples were examined more closely. Then the dimensions for each
category were investigated, to outline how to interpret the informants’ perceptions
of their reality. Finally, themes were identified and discussed with the second and
third authors (MD and BF, respectively). The entire analytic process was augmented
by feedback and discussion with the other research group members and, through
interim reports on findings, with a panel of experts of varying relevant disciplines
(For more on overall methods, see Niemeijer et al., 2014).
Table 3: Data collection
Dementia care unit (DCU)
Care facility for people with ID (CFID)
Period
April 2010 to July 2010
November 2010 to February 2011
Participant
observation in the
facilities
14 weeks
12 weeks
3 days a week
2 days a week
200 hours of observation
140 hours of observation
Participating in various shift (day,
evening, and night)
Participating in various shifts (day,
evening, and night)
Also present at
3 rounds with the doctors; 2
information meetings with family;
2 half hour ST instruction trainings
for new staff; many shifts tranfers;
day time activities with the clients.
Fire safety instruction training for staff;
exercise session with clients and
physiotherapists; ethics committee
meeting, many shift transfers; day time
activities with clients.
Formal interviews
1 member of the board
representing clients
2 two relatives of one of the clients.
2 night nurses
1 nursing assistant
1 elderly care physician
2 team leaders
1 night care manager
1 ID physician
1 cluster (regional) manager
1 occupational therapist.
(n=6)
1 occupational therapist (n=8)
RESULTS
The following themes on the use of surveillance technology emerged from the data:
continuing to do rounds, alarm fatigue, keeping clients in close proximity, locking
the doors, and forgetting to take certain devices off. Each theme, with supporting
quotes from field notes and interviews, is described further below.
Continuing to do rounds. In both facilities, in addition to monitoring clients with
surveillance technology, the night nursing staff continued to do rounds, rather than
remaining at the nurses’ station and checking clients individually when prompted by
signals. The practice of doing rounds continued even though management had
reduced the number of staff present at night and now viewed rounds as superfluous.
This meant that staff had to make some adjustments. For instance, in the nursing
home, clients were still checked on as regularly as they had been before the
introduction of the surveillance technology system, but now the night nurse did it
by herself. As one nurse said,
Previously we used to walk the rounds together, but now during the night you are primarily on your
own.
Several night nurses indicated that they felt they couldn’t rely entirely on surveillance
technology, and this was one reason they continued doing rounds. One night nurse
brought up two more reasons: surveillance technology doesn’t indicate how
everything is left by the evening shift, and doing rounds kept her busy.
Certain errors are… how I can say this…things still go wrong during the evening shift… And ST
doesn’t tell you if the bedrail is still up or not or other things… It is still human labor, what we
do… Plus, it also keeps me busy, you know? You might be able to use [ST] as an aid, but I do
not think that is a substitute.
They [the management] assume that you should be able to rely on ST and that the ST system takes
over from you as a kind of warning system. But I don’t really believe in this idea. No. It is an aid.
Alarm fatigue. There were many instances when the surveillance technology
produced a false-positive alarm—it issued a warning even though the client was
unharmed and in no danger—and this contributed to alarm fatigue among staff, and
sometimes led to staff turning this technology off. For example, at night falsepositive alarms sometimes occurred when a motion sensor in a client’s bedroom was
repeatedly triggered because the client was walking around in the room or visiting
the bathroom. In both facilities, when this occurred, the night staff would turn the
alarm off and would let the client “walk around leisurely until he is tired enough to
go back to bed” or “let him go and have a long pee.” Twenty or 30 minutes later,
the attending night nurse or support staff would check on the client to see if she or
he was done walking or visiting the bathroom; once the client returned to bed, the
nurse or staff member would quietly turn the alarm back on.
In the nursing home, one night nurse dealt with alarm fatigue by turning the alarm
off, leaving the nurses’ station, and positioning herself closer to the client (such as
by sitting in the unit’s living room). In this case, the alarm was being triggered by
acoustic sensors reacting to (sometimes frightened) clients who tended to cry out
frequently. As one nurse explained, “Yes, I sometimes do that [seats herself nearer
to a client]. This way I’m close by, and otherwise my acoustic alarm would go off
the whole time.” The nurse also felt that her clients could sense her nearby presence
and were somehow calmer than they were when she remained at the nurses’ station.
But it wasn’t always possible to leave the nurses’ station, especially when some clients
were allowed to roam the ward and when she also had to monitor the cameras.
Keeping clients in close proximity. In both facilities, at times, certain surveillance
devices stopped working (notably the electronic bracelets, as well as the camera in
the hallway of the nursing home and the GPS tags of one client). This tended to
cause staff to keep their clients close by, and also may have kept staff from using
surveillance technology to its full potential. For example, at the residential care
facility, one client who had a tendency to run off and get lost had a GPS chip placed
in his coat. This chip was linked to the office computer in the client’s small-scale
unit. But the support staff didn’t often make use of this technology; it was not
regarded as an improvement over the ‘duo bicycle’ (a bicycle with two side-by-side
seats, one for a client and one for a support worker) that they were already using.
According to one of the support workers, the duo bicycle was “a fine solution for
this running away problem,” because this client tended to “run off less when we’re
cycling.” Furthermore, when the support workers were asked to demonstrate how
the GPS chip works, the chip failed to emit a signal. One support worker asked
another, “The chip is in [the client’s] coat, isn’t it? Have you turned the signal off?”
The second worker said he had not, but there still was no signal. “Next time then,
we don’t use it that much and we’ve got the bike anyway.” the first support worker
said. Fifteen minutes later the client and the support worker used the duo bicycle to
visit a therapist. The following week, the GPS chip still was not functioning. At the
same facility, another client wore an electronic bracelet that was programmed to
allow her to pass through the living room door into a spacious corridor. But the
bracelet didn’t always work properly, and when it didn’t she couldn’t pass through
the door. When asked about this, one of the support workers said that the bracelet
failure was “a hassle with these things,” and added that “it is enjoyable having [this
client] more around in the living room.”
Locking the doors. A perceived benefit of surveillance technology is that it can
afford clients more freedom of movement. Indeed, in both facilities, surveillance
technology was adopted as part of an active policy to reduce the use of traditional
physical restraints. But the staff continued to lock certain doors, most often during
the night and at the beginning of or during rounds. Sometimes this included all
doors—the front door of the unit, the door to the living room, and even the
bedroom door. One night nurse considered this practice necessary, protective rather
than restrictive:
If people are for instance walking around in the units, well, then they could do all sorts of things, I
mean, coffeemakers, cutlery, food…Everything is accessible, they could empty out the fridge… And
there are people amongst our clients who, so to speak, would destroy the whole living room. And if
you’re busy tending to other clients and you came back and… well no, I don’t think that this should
be possible. So I can imagine why the living room is locked.
A nursing assistant felt that less freedom of movement for clients was a “safe idea,”
safer than allowing them to wander around in the communal hallway, because then
“you wouldn’t know where they would be exactly.” She added,
Suppose a client went out of his room… and all the doors were open and… they started to wander
around… and you’re so busy, you couldn’t respond immediately, and suppose someone falls
somewhere. They could be lying there, cold on the ground!
Forgetting to take certain devices off. Yet at times, surveillance technology
continued to be used even after the original reason for its use had expired. This
happened most often with the electronic bracelets and GPS tags, perhaps because
they were relatively unobtrusive. As a team supervisor pointed out,
A bracelet is also different [from] a table top, for instance, which is much more visible, in your face,
bigger… it’s more of an obstacle in itself. A bracelet, well… clients are far less affected by a bracelet
I think.
In the nursing home, one client was originally given a bracelet containing a GPS chip
because he tended to wander, and this bracelet let him do so within certain
perimeters. But he sometimes slipped through these perimeters (as when a certain
door was inadvertently left open) and got lost in the communal halls. When this
happened, he became very confused or upset (or both). As a result, a decision was
made to keep the front door of his living unit locked, but no one thought to take his
bracelet off. After this client subsequently fell and injured himself several times, he
was put in a wheelchair with a table top, to prevent him from standing up and
walking off. Three months later, he was still wearing the bracelet and the door was
still kept locked. When one of the nursing assistants was asked why all these
measures were still in place, she responded that one doesn’t “reflect on certain
things, you just do them because it has been prescribed as such.” According to the
elder-care physician,
The responsible nurse, the physician and team supervisor are supposed to evaluate these measures
every once or so. So I can imagine this issue was not in clear view and ignored in evaluation—or
not seen as an issue at all.
And the team supervisor stated that “people are such creatures of habit, so that…
at a certain point it becomes normal… that’s what I think.”
DISCUSSION
Our findings indicate that a more nuanced view of the benefits and drawbacks of
surveillance technology is called for. While certain envisaged benefits and feared
drawbacks did not emerge in actual practice, other benefits and drawbacks did
indeed emerge. We also found that informants tended to incorporate surveillance
technology by combining old care routines with new ones. For example, informants
continued to do rounds and to lock doors, and they continued to prefer being in
close proximity to their clients. They made intensive use of certain surveillance
devices (such as the digital enhanced cordless telecommunications [DECT] phone),
while regarding other technologies (such as tagging and tracking systems) with
ambivalence and either not using them or forgetting to re-evaluate such use.
Benefits and drawbacks
In both facilities, with regard to the envisaged benefit of reduced workloads, the use
of surveillance technology allowed management to cut nighttime staff. In the nursing
home, for example, the staff was reduced from two night nurses to one. Yet in effect
the new technology also added to the staff workload. For example, the night nurse
continued to do rounds while also carrying the DECT phone and monitoring its
signals. This was a skillful way to combine an old routine (personal monitoring) with
a new one (electronic monitoring). It also ensured that vital nursing skills were
retained rather than degraded.The many instances of false positive alarms at both
facilities further added to staff workloads. But experience might help counter this
effect. Depending on the client, an experienced nurse might decide to turn a certain
surveillance method off, recognizing that in this case it was ineffective and possibly
causing delayed responses to other clients.
The envisaged benefit of greater client autonomy was one of the main reasons both
facilities implemented surveillance technology. But the informants in this study
appeared to make little use of the tagging and tracking systems. At night they
preferred to keep the doors locked, and even during the day they weren’t keen on
allowing clients more freedom of movement. Informants reasoned that they
wouldn’t be able to adequately oversee a situation, or might arrive too late, after an
adverse incident had occurred. They also worried that having to watch over a bigger
area would be problematic. Informants didn’t seem to want to consider the devices’
potential advantages for clients of enhanced freedom. When electronic bracelets
were implemented to increase a client’s area of movement, once she or he was
perceived to be at risk in these “strange surroundings,” informants reverted back to
traditional methods of physical restraint, such as locked doors or wheelchair table
tops. It’s remarkable that, in such instances, informants either forgot to take off the
bracelets or didn’t see this as a concern, as if all such measures need not be properly
evaluated and considered together.
Lastly, the use of surveillance technology did not seem to cause attenuation of the
nurse–patient relationship. Informants still continued to do rounds (although
obviously, where staff was reduced, this meant the remaining nurse had less time per
client). During the day, informants also continue to use the duo bicycle. It seems
that increased electronic monitoring will not automatically result in reduced personal
monitoring and may even enhance it. Certain mobile devices (such as the DECT
phone) can offer staff the advantage of greater flexibility, allowing the nurse to stay
in closer proximity to one client while continuing to monitor others.
Local logic of ‘safe autonomy’
The manner in which the nursing and support staff in our study incorporated
surveillance technology into their care routines indicated that values such as safety
and physical proximity were dominant. Facilitating or increasing clients’ autonomy,
one of the envisaged benefits of surveillance technology, seemed largely secondary
to providing proximate and safe care, since informants were reluctant to allow clients
more freedom of movement or to increase the physical distance between themselves
and their clients.
This reluctant or reserved approach might be explained as a resistance to taking
more risks, as several factors may have contributed to this. Equipment or systems
sometimes broke or failed to work properly, as did one client’s GPS chip; yet the
reliability of any new technology is vital to its successful implementation (MargotCattin & Nygard, 2006; De Veer et al., 2011). Indeed, the perception that a new
technology increased risks to client safety has been reported as impeding its use (De
Veer et al., 2011). In our study, frequent false-positive alarms for some devices
probably made it harder for informants to trust the technology; they frequently
stated that surveillance technology was something one cannot rely on completely.
Increased caregiver stress and altered logistics may also have caused resistance, as
when the technology resulted in staff cuts, leaving a night nurse with more clients
and larger physical areas to cover. Yet, despite their reservations, informants also
showed creativity in devising individualized solutions to problems, as when staff
dealt with repeated false-positive alarms by turning surveillance off temporarily until
an active client was tired enough to sleep.
In a study by Robinson et al., professional caregivers favored client safety over
autonomy “due to a fear of litigation.” (Robinson et al., 2007). They also felt “that
society would regard them as negligent if they didn’t operate a locked door policy in
nursing homes.” This likely reflects the fact that protecting clients’ safety is not only
an internal professional and institutional mandate, but is also influenced by external,
societal pressures. Ultimately, taking risks is a necessary part of working with
surveillance technology, in order to reap its benefits (Zwijsen et al., 2012). Thus, how
risk and “risky” behaviors such as wandering are perceived by staff is critical to how
they are addressed in the facility (Wigg, 2010). For instance, instead of seeing
wandering only as a problem behavior that must be controlled, it might be regarded
as therapeutic and vital to a client’s health, offering exercise and/or time outdoors
(Wigg, 2010). This view allows for what Perske called the “dignity of risk,” a
necessary component of freedom and autonomy (Perske, 1972).
Of course, applying the concepts of freedom and autonomy to the actual living
situations of people dependent on long-term care is anything but straightforward.
Indeed, standard views of autonomy, which emphasize noninterference and
independence, have recently come under more criticism as having only limited
applicability for this population (Agich, 2003; Hertogh, 2005). For caregivers, these
concepts are often too difficult or impractical to realize, because care inherently
involves some degree of intervention (Niemeijer et al., 2011) and is about meeting a
responsibility rather than an obligation (Tronto, 1993). As an alternative, relational
models of autonomy have been proposed that may prove more useful. These
emphasize interdependence within the social context of a person’s life, while still
allowing for interventions aimed at empowerment and freedom (Moody, 1992;
Tronto, 1993; Agich, 2003; Hertogh, 2005).
Implementation and the vision of care
In both study facilities, the implementation of surveillance technology was not
embedded within a predetermined, internally supported vision of care. This led us
to question whether informants’ use of the technology would have differed had
implementation been so embedded. For instance, none of the informants were
consulted beforehand with regard to surveillance technology. And once it was
implemented, they weren’t properly informed of its potential risks and benefits. For
example, the instruction and training informants received in the nursing home in
working with surveillance technology was limited to one 30-minute session. As a
result, staff members held different views about how to work with surveillance
technology: for example, the night nurses felt that continuing to do rounds was
essential, while management saw this as superfluous.
Another result was that, despite usage protocols, there was a lack of regular
evaluation for certain technologies, as when electronic bracelets remained in place
long after the reason for use expired. This finding is in keeping with the Dutch
Health Inspectorate’s 2009 report, which concluded that few to none residential care
facilities for people with dementia or intellectual disabilities in The Netherlands had
formulated a vision of care for or conducted a risk analysis of surveillance
technology, and that neither registering surveillance technology in a client’s care plan
or evaluating such technology was customary (Dutch Health Inspectorate 2009).
Although an embedded implementation of surveillance technology wouldn’t
automatically ensure desired outcomes, experts agree that for the implementation of
any care innovation to be effective, it should take into account the perspectives and
prevailing values of all stakeholders (Leonard, 2004; Van den Ende, 2011).
Limitations
One possible limitation is that we found no notable differences in how surveillance
technology was used by informants at the two facilities, even though the client
populations were quite different. It may be that how surveillance technology is
applied depends less on the care setting and more on how it is viewed and
understood by those using it.
Another limitation may have been the potential effect of the researcher’s presence
on staff behaviors. Initially, the nursing and support staff in both facilities seemed
acutely aware of his presence, often making remarks such as “What are you
observing then?” But after several visits, the researcher’s presence seemed to
become part of the normal routine. To facilitate this, the researcher did not take
notes in the presence of staff members, but instead did so in a separate private area
after each shift.
A third limitation was that data collection was limited to two residential care settings
in The Netherlands, thereby limiting the extent to which the findings are
generalizable. That said, our study did not focus on frequency and statistical variance;
rather, it focused on the extent of variation in which the observed situations
occurred and on how exemplary these situations were (Glaser & Strauss, 1967,
Hertogh et al., 2004, Corbin and Strauss, 2008). We believe the experiences our study
informants described are probably common among staff in similar facilities
elsewhere; but further study, especially in other settings, is warranted.
CONCLUSIONS
Our findings indicate the need for a more nuanced view of the benefits and
drawbacks of surveillance technology. The nurses and support staff in this study
tended to incorporate surveillance technology into existing care routines and to do
so with some reluctance and reservation. They also tended to favor certain
technologies over others, for example, making intensive use of certain mobile
surveillance devices (such as DECT phones) while demonstrating ambivalence
about others (such as the tagging and tracking systems). Client safety and physical
proximity seemed to be dominant values for our informants; this suggests that the
fear that surveillance technology will cause attenuation of the care relationship is
unfounded. On the other hand, the values of client freedom and autonomy seemed
less influential, as reflected by the ways participants used surveillance technology.
Nursing and support staff often appeared unwilling to take risks with the technology,
perhaps in part because they didn’t always trust it to be reliable.
Recommendations
Before any institution decides to invest in and implement surveillance technology,
the management should determine—in consultation with all its employees—what
the institution aims to achieve with surveillance technology; which organizational
requirements should be satisfied and what the potential risks and benefits are, both
for the institution and for each individual client. Nursing homes and residential care
facilities for people with intellectual disabilities, in particular, should also explore
through ongoing dialogue how staff members view and understand the concepts of
autonomy and risk. This will help not only in incorporating surveillance technology
into clients’ care plans, but also in enhancing staff engagement. Most facilities already
conduct periodic risk assessments as a matter of policy, and surveillance technology
should be included in such assessments. In short, a clear and well-formulated vision
for the use of surveillance technology—one understood and supported by all
stakeholders—seems imperative to successful implementation.
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Chapter
6
Autonomy under
surveillance
The experiences of
people with dementia and
intellectual disabilities
with surveillance
technologies in
residential care.
Niemeijer, A.R., Depla, M.F.I.A.,
Frederiks, B.J.M. and Hertogh C.M.P.M.
Published as:
Niemeijer, AR, Depla, MFIA, Frederiks, BJM and Hertogh, CMPM. (2014). The experiences
of people with dementia and intellectual disabilities with surveillance technologies in
residential care. Nursing Ethics. Published online before print June 9 doi: 10.1177/
0969733014533237.
ABSTRACT
Background Surveillance technology such as tag and tracking systems and video surveillance
could increase the freedom of movement and consequently autonomy of clients in long-term
residential care settings, but is also perceived as an intrusion on autonomy including privacy.
Objective: To explore how clients in residential care experience surveillance technology in
order to assess how surveillance technology might influence autonomy.
Setting Two long-term residential care facilities: a nursing home for people with dementia and
a care facility for people with intellectual disabilities.
Methods Ethnographic field study.
Ethical considerations The boards representing clients and relatives/proxies of the clients were
informed of the study and gave their written consent. The clients’ assent was sought through
a special information leaflet. At any time clients and/or proxy were given the option to
withdraw from the study. The research protocol was also reviewed by a medical ethics
committee.
Findings Our findings show a pattern of two themes: (1) coping with new spaces which
entailed clients: wandering around, getting lost, being triggered, and retreating to new spaces
and (2) resisting the surveillance technology measure because clients feel stigmatized, missed
the company, and do not like being ‘‘watched”.
Conclusion Client experiences of surveillance technology appear to entail a certain
ambivalence. This is in part due to the variety in surveillance technology devices, with each
device bringing its own connotations and experiences. But it also lies in the devices’
presupposition of an ideal user, which is at odds with the actual user who is inherently
vulnerable. Surveillance technology can contribute to the autonomy of clients in long-term
care, but only if it is set in a truly person-centered approach.
INTRODUCTION
O
ne of the main perceived benefits of using technology in long-term
residential care settings for people with dementia or intellectual disabilities
(ID) is that it could increase the freedom of movement and consequently
the autonomy of clients. Instead of using certain forms of freedom restriction (such
as bed straps or locked doors) in order to manage wandering behavior and/or
safeguard clients from (self-inflicted) harm, specifically designed surveillance
technologies (STs) can be utilized to increase the client’s range of action and
movement, albeit in a secure and responsible way (Margot-Cattin and Nygard, 2006;
Wigg, 2010; Zwijsen et al., 2012; Te Boekhorst et al., 2013). For instance, tagging and
tracking technology, such as electronic bracelets and Global Positioning System
(GPS) tags, enables clients to access areas on their own, without any hindrance, but
within certain secure parameters. Similarly, ST such as video and audio surveillance
and movement sensors might allow the client to move around more freely and at
the same time notifying attending staff of any impending danger.
Ethicists have pointed to an inherent ethical conflict in this premise, as monitoring
clients using these forms of ST is also perceived as an intrusion on the autonomy
(and consequently privacy) of the client (Eltis, 2005; Hughes et al., 2008; Perry et al.,
2008). However, the concept of (respecting) autonomy is not very straightforward
with regard to the actual living situation of (long-term) care-dependent people, such
as people with dementia or ID. In fact, standard views of autonomy emphasizing
non-interference and independence have come under more criticism recently and
are viewed as having only a limited applicability for long-term care (Agich, 2003;
Hertogh, 2005; Bekkema et al., 2013).
There have been few empirical studies that investigated whether and how clients
with dementia or ID in residential care benefit from ST. So far, ST has been reported
as something which might support well-being (Margot-Cattin and Nygard, 2006) or
increase the quality of life (Wigg, 2010). On the other hand, Te Boekhorst et al.
(2013) concluded that the quality of life of highly dependent nursing home residents
with dementia seems to be unrelated to the use of ST versus physical restraints. In
addition, Margot-Cattin and Nygard (2006) state that the possible reasons for
residents not to benefit from an access system were not particularly investigated in
their study and more research is needed as to why people with dementia might not
benefit from ST.
Of the three empirical studies to date, all focused on residential care for people with
dementia (Margot-Cattin and Nygard, 2006; Wigg, 2010; Te Boekhorst et al., 2013)
and none on residential care for people with ID. Despite intrinsic differences
between both client groups, the use and application of ST raises very similar (ethical
and legal) issues in people with dementia and ID, specifically within a residential care
setting (Welsh et al., 2003; Perry et al., 2008; Niemeijer et al., 2010). In the Netherlands
for instance, one judicial framework exists that pertains to the rights of both
(institutionalized) groups, specifically with regard to freedom restriction and ST,
providing an additional reason to include both people with dementia and people
with ID as the focus of empirical research.
Whether the client is benefited by ST, it is necessary to research their perspectives
and experiences with ST. Increasingly, ethnography has been recommended as a
suitable approach for investigating the experiences of people with dementia or ID
in residential care, allowing researchers to obtain ecologically valid insights into client
perspectives, not only through verbal communication but also by observing
behavior and reactions (Gilbert, 2004; Nygard, 2008). Accordingly, we conducted an
ethnographic field study in two different residential care settings whereby the main
aim was to explore how clients in residential care experience ST, in order to assess
how ST might influence the autonomy of people with dementia or ID.
METHODS
Design
The analysis featured here was drawn from data generated in an ethnographic study
conducted between 2010 and 2011 in two residential care settings in The
Netherlands. Ethnography is characterized by a prolonged contact with informants
and enables the researcher to observe behavior which is best understood in its own
natural environment. This explorative study involved participant observation
combined with informal conversations with clients, intended both to gain better
understanding of clients’ experiences with ST and as a clarification of what had just
been observed (member check), and formal interviews with relevant others, such as
family and staff. These were undertaken not only to triangulate and validate the
data, but in some cases simply to broaden the view to include the person’s immediate
context in terms of the social environment (DeWalt and DeWalt, 2010).
Selection of care settings
392 nursing homes and 144 residential care settings for people with ID in the
Netherlands were approached through a survey; 160 nursing homes and 79
residential care settings for people with ID returned the survey. Care settings were
selected on the following criteria: 1) they shared a multiplicity of ST; 2) ST was used
as an alternative to physical restraints, and 3) the application of ST was integral to
their care policies (e.g. a specific ST protocol). After having identified more than 30
potential residential care settings, 7 residential care settings expressed a willingness
to cooperate in the research and were visited by the researcher. Ultimately two
residential settings were chosen (table 1) where the research took place:
1. A dementia special care unit (DCU) of a nursing home in the North of Holland,
consisting of six new small scale units and one large scale unit (43 clients)
2. A residential care facility for people with ID (CFID) in the southwest of Holland
providing care for a heterogeneous group of clients with ID, ranging from mild to
severe ID. Research was done in six small scale living units: two units for clients
aged 45 and above with severe ID (including ID and dementia); two units for clients
aged between 18-40 with moderate to severe ID and two semi residential units with
clients aged between 25 and 60 with mild ID (42 clients in total).
These two different populations had overlapping features; such as older clients in
either settings with dual diagnoses of dementia and ID, and differences, as the
average age of clients with ID living in four of the observed six units was lower than
that of the DCU. This meant that some of these clients were more mobile and agile
and had a tendency to run away (instead of wander off more slowly). With regard to
both residential facilities, there were no other obvious differences in activity profile
and consequently surveillance needs. However the surveillance of clients with mild
ID in the semi residential care units did differ more significantly from those in
residential care, as they were deemed capable of doing more themselves (see table
2). In addition the clients with mild ID were easier to communicate with verbally,
due to their cognitive abilities.
Informed consent
People with dementia or ID may not always express valid informed consent to
participate in research, as they are not always capable of communicating well verbally
(Margot-Cattin and Nygard, 2006). In order to protect those individuals taking part
in the study, the following steps were undertaken. First, the boards representing
clients and relatives/proxies were informed through a letter and granted their written
approval. All family or proxies of the clients in the units where the research took
place were informed of the research study through information leaflets and were
asked to give their written consent. In order to seek the clients’ assent, a special
information leaflet informing the client of the research study was designed and
handed out as well. In addition, every time the researcher participated in a new unit,
each client would be informed of his presence and asked by the attending staff
whether anyone refused his presence.
Table 1: Characteristics of selected care facilities.
Facility characteristics
Dementia care unit
(DCU)
Care facility for people
with ID (CFID)
Area
Semi-rural
Urban
Number of units (where the
research took place)
7 in total: 6 small scale
units + 1 large scale unit
(all in 1 location)
6 in total: 4 residential
small scale units, 2 semi
residential units outside the
CFID
Number of clients (who
participated in the research)
43 in total (6 clients per
small scale unit, 13 clients
in the large scale unit)
42 in total (7 clients per
unit in the CFID
Indication ST
by team supervisor and
elderly care physician in
consultation with family
or proxy
by team manager, ID
physician and psychologist
in consultation with client
or family or proxy
Physical restraints
nursing blankets, bedrails,
wheelchair table tops and
safety belts in the
wheelchair, locked doors
nursing blankets, bedrails,
safety belts in the
(wheel)chair, seclusion
area’s, locked doors
The researcher was specifically instructed by the management of both facilities to
stop gathering data if a client showed any signs of stress or disapproval of the
researcher’s presence even if there had been no refusal beforehand. At any time both
relatives/proxies and client were given the option to withdraw from the study. An
information meeting was held for staff prior to the study informing staff of the study
and ask for their consent. Finally, formal approval was granted by the management
teams of both facilities and the research protocol was reviewed by Medical Ethics
Committee of the VU University Medical Center. In order to ensure confidentiality
of all informants, all data was anonymized.
Use of ST devices
Table 2 provides an overview of the ST devices which were used in the facilities
researched. Most devices were used in both facilities, with the exception of acoustic
surveillance and GPS technology, which was only used in the CFID.
Table 2: ST devices and their use in both selected care facilities
Device
Use
DECT phone
Each nurse or support worker was equipped with a
DECT phone, enabling them communicate with each
other and to ‘listen in’ on any room of their unit. An
alarm on the DECT phone could be triggered by sound
and/or movement detection (sensors) which were present
in each room. In the DCU the DECT phone was used 24
hours per day, in the CFID only during the day and
evening shifts, but not during the night.
Movement sensor(s)
Depending on each individual case, these were switched
on or off in the client’s bedroom.
Acoustic sensor(s)
In the DCU, depending on each individual case
these were switched on or off, in the CFID all the
clients were listened in during the night.
Acoustic surveillance
During the night all clients of the CFID were
listened in from a central location using the acoustic
detection in the clients’ room.
Electronic bracelets
In the DCU, 8 clients wore electronic bracelets to
which the automatic doors would respond to. The
bracelets allowed them to walk within specific areas
with set parameters, so called ‘living circles’. There
were 3 living circles: the small scale living unit, the
hallway that led to the units and an extra walking
area. Depending on the client, a specific living circle
was assigned. In the CFID 4 clients within the
facility wore bracelets which only opened to one
extra-large corridor, outside the living unit.
Automatic doors
Each door had an access code that only staff and
regular visitors knew. However the doors would
open to those clients with electronic bracelets.
GPS tags
2 clients in the CFID had a GPS tag, which was
sewn into their coats. The GPS tag allowed clients to
walk around outside on their own, on the terrain of
the CFID. The GPS was linked to the computer in
the office part of the living unit.
Video surveillance
In the DCU a camera was used in the hallway
connected to a monitor of the night nurses’ office.
In the CFID a camera was used in a semi residential
unit, connected to a monitor in the front office. In
addition, individual cameras could be placed and
used during the night, monitored from a central
location (one client with severe epilepsy had camera
surveillance during the night).
2.5 Data-collection
Data was collected by the first author (A.R.N.) during two different periods: from
April 2010 to July 2010 in the DCU and from November 2010 to February 2011 in
the CFID. See table 3 for an overview of the characteristics of the data collection.
Because participant observation is flexible, it allows for many combinations and
permutations of data collection in the research setting (Hoare et al., 2012). For the
researcher this meant at times switching from active to moderate participation
(DeWalt and DeWalt, 2010) when the opportunity arose. Active participation meant
helping out the nurse (assistant) or support worker during a shift- primarily with
domestic tasks, such as cleaning, cooking and feeding clients, or accompanying
clients on their way to their day activities. Moderate participation meant the
researcher would suspend his tasks if and when possible, in order to follow or
shadow specific clients who were on the move. All staff was informed beforehand
that this could occur during the participation of a shift. Field observations were
documented in field notes which included not only observations of all occurrences
related to ST, but also reflective comments of the researcher and information from
the care plans of the clients to which the researcher was also given temporary access
to (i.e. only to be read on location) in both care settings. Next to this the researcher
conducted eight formal interviews in the nursing home and five formal interviews
in the care facility for people with ID (see table 3), whereby all key informants were
purposively sampled. These interviews would last between 45 minutes and an hour
and were transcribed ad verbatim. The interview guide used was structured on the
field notes and was designed using the same format for all the informants in order
to give meaning to the researcher’s observations, but also to bring out their
perceptions on (how the client experiences) ST, and to elaborate on the meanings
they gave to the clients’ actions.
Table 3: Data collection
Dementia care unit (DCU)
Care facility for people with ID
(CFID)
Period
April 2010 to July 2010
November 2010 to February 2011
Participant
observation in
the facilities
14 weeks
12 weeks
3 days a week
2 days a week
200 hours of observation
140 hours of observation
Participating in various shifts;
i.e. day, evening and night shifts
Participating in various shifts; i.e.
day, evening and night shifts
Also present
at
three rounds with the doctors,
two information meetings with
family, two 30 minute ST
instruction trainings for new
staff, during the transfer of
shifts and during day time
activities with the clients.
a fire safety instruction training
for staff, during an exercise
session with the clients and
physiotherapists, at an ethical
committee meeting, during the
transfer of shifts and during day
time activities with the clients.
Formal
interviews
1 member of the board
representing clients
2 two relatives of one of the
clients.
2 night nurses
1 ID night care manager
1 nursing assistant
1 ID physician
1 elderly care physician
1cluster manager
2 team leaders
1 occupational therapist.
(n=6)
1 occupational therapist
(n=8)
2.6 Analysis
A grounded theory approach allows important concepts to emerge out of the data;
meaning is created through the generation of data (Corbin and Strauss, 2008).
Analyzing in accordance with a grounded theory approach meant data analysis and
data collection taking place in the same time frame. This entailed that the data was
read preliminary to refine the research question and guide the ensuing data collection
and re-read in order to search and identify patterns, after which they were compared
and analyzed on differences and similarities (‘constant comparison’, Glaser and
Strauss, 1967; Corbin and Strauss, 2008). First the field notes and concurrently the
interview transcripts were initially coded using open codes and writing initial memos.
After identifying core themes related to the research question(s) a focused coding of
all the data, together with the second author (M.F.I.D.) was conducted, using
integrative memos and linking codes and data to each other in order to identify
categories (see figure 1). In order to examine for variance and consistency on these
categories, contrasting examples were examined more closely. With the aim of our
study in mind, a pattern of themes emerged, which were discussed together with the
third and fourth authors (B.J.M.F. and C.M.P.M.H.). The entire process of analysis
feedback was given through discussion (‘peer debriefing’) with other members of
our research group and through interim reports on the research findings with an
advisory panel of experts from in the field (e.g. physicians, policy advisors and client
representatives), with whom preliminary results were discussed. If there were
discrepancies in the analysis, these would be resolved through consultation with the
panel of experts. During analysis, close attention was paid to the fact that the data
reflected several different perspectives (e.g. the formal interview data contained
caregiver perspectives, whereas the observational data focused primarily on the
clients’ actions and views). As it was the clients’ experience and behavior that was
the primary object of this study, it should be noted that the examples in the results
section are all drawn from what was directly observed. As such, the interviews have
been primarily used to triangulate the data (and to broaden the view of the client).
In the presentation of our findings we try to use ‘thick description’ (Lincoln and
Guba, 1985) by describing the phenomenon observed in sufficient detail.
Figure 1. Process of analysis
Open coding of the
observational data
Independent coding
by different members
of the research group
Discussion of open
codes amongst
members: striving
towards consensus
Making theoretical
memo's and creating
categories
Axial coding:
identifying
relationships among
the open codes.
Reformulation of
open codes
Selective coding:
connecting categories
Generating themes
Testing integrity of
main two themes
within research group
RESULTS
How clients in residential care experience ST was understood to create a pattern of
the following two themes:
Theme 1. Coping with new spaces which entailed clients: (1) wandering around, (2)
getting lost, (3) being triggered, and (4) retreating to new spaces.
Theme 2. Resisting the ST measure because clients (1) feel stigmatized, (2) missed
the company, and (3) do not like being ‘watched’.
Theme 1: Coping with new spaces
The introduction of ST in both care facilities meant that each client who was still
mobile was given a new electronic bracelet, and depending on their activity profile
and surveillance needs were allowed to move around more freely in new space, albeit
within set parameters. How clients coped with these “new spaces” is illustrated by
the different experiences below.
Wandering around
As a result of the electronic bracelets, certain clients in both care settings were
constantly on the move in what was now additional space, whereas before these
clients had been confined to moving around in their communal living room. Since
ST had been introduced, several nurses and support workers had noted that a
number of clients had become “less restless” during the night. One of the more
“restless clients” (as she was called by staff) in the nursing home, Mrs. V., found it
indeed difficult to keep still during the day and even during the evening meal, where
she would frequently wander off before the rest had finished, continuously moving
around in what was now additional space. Before she would get up she would often
proclaim: “I have to go now- otherwise I’ll be late” (field notes, 10 May 2010), often
taking some cutlery or other loose items with her, putting them in her handbag and
then placing these somewhere else, such as one of the chairs in the hallway, where
she would pick them up later again and again place them somewhere else. This would
be done repeatedly during the day. The night nurse had noted that Mrs. V. – who,
according to her file, had indeed been a frequent night wanderer – got out of bed
less since she was able to wander more during the day (interview, 05 July 2010).
Another client, Mrs. T. was not so restless, but with the help of her bracelet, would
go for a wander half an hour before lunch every day. The normal routine of all the
nurses and nurse assistants was to gather every client at the table at least fifteen
minutes before lunch was served, however the nurses made an exception for Mrs.
T. and allowed her to go out before lunch because they knew Mrs. T. would return
in time.
Getting lost
An increase in freedom of movement with ST could also result in clients being
inconvenienced by its use. One such client was Mrs. van D. in the nursing home,
who had a tendency to end up in the canteen of the nursing home, sometimes as
much as three times a week, where she would often be seen searching for something
frantically under and around one of the tables. Frequently she would ask anyone
nearby whether they had “seen my two sons?” and whether one could “help me look
for them?” On one occasion this ended up in her crying out “I’m lost, I’m lost”
(field notes, 24 May 2010), which continued for fifteen minutes after which a nurse,
who had been alerted by the kitchen help, came to fetch her.
There were several occasions where clients would end up in the reception area of
the nursing home, the neighboring units or the utility room of the residential care
facility for people with ID, which in the latter case ended up being locked during the
day as a result. The most hazardous situations were those were the client would slip
through doors opened by (often visiting) others and walk out of the bounds of the
facility and get lost in the woods or the nearby shopping center, which led the care
facility for people with ID to use an additional GPS chip for one of the younger
clients named J., so he could be “tracked down” when this happened.
Being triggered
As certain clients are allowed to go beyond a certain set of parameters and see doors
opening up (thanks to their bracelets) to new spaces, this often triggered a reaction
in other clients who were not allowed to go beyond certain doors, to slip throughultimately resulting in clients fumbling with a closed door, trying to open it. One of
those clients, Mrs. van G. who did not have a bracelet, also tries to slip through the
door when she sees another client walking through. After having fumbled with the
door audibly for several minutes, without getting it to open, a nurse assistant arrived
and sits Mrs. van G. back down on the bench. Mrs. van G. appeared to be agitated,
as the following short conversation occurs (field notes, 7 July 2010): “Now I’m
sitting here, but that wasn’t the idea! What do you mean by this, Mrs. van G.? I ask.
“I didn’t want to sit here...” Because? “Well yes, well. I wanted to go where he went
to..! (Mrs. van G. points to the next hallway). At least, that was the idea, but now I
am here again” “Again” Mrs. van G.? “Yes ‘again’! They always take things from you
that you want to do.”
Retreating to new spaces
One way in which clients negotiated the extra space in both care facilities was to
retreat to a separate area other than their own bedroom, thereby carving out a small
“extra private space” for themselves. This would often be a particular spot
somewhere in the facility to which a client would frequently return to, as was for
instance the case with Mr. J. in the nursing home, who would retreat every day to
the corner of the hallway which had a large windowsill and a view looking out on
the fields. He often used the window sill as his canvas on which he would draw or
scribble. The nurses let him do this as long it was with a pencil, and sometimes a
nurse would give him a piece of paper. One day, the following short conversation
occurs with Mr J., indicating what he appreciated about this corner spot (field notes,
15 June 2010): This is a nice spot Mr. J- and what a view! I say. ‘Yes definitely!’ Mr.
J. replies. “It’s nice and quiet here as well.” Quiet? I ask. “Yes you know- the others
aren’t here.” One of the nurse assistants stated that she was happy for Mr. J. as
before he would retreat to his bedroom and “sit there all day” whereas now he was
“out and about more”. Sometimes clients would retreat from their own unit not to
be alone, but to visit other, neighboring units. For example, one of the older clients
with ID named R. would visit the living room of his neighboring unit every day and
make a particular puzzle at the table there, which he only wanted to do there. After
finishing, he would go back to his own unit. One of the support workers explained
that they had tried making the puzzle in his own unit, but that he had refused this:
he was only content to make it there. The electronic bracelet allowed R. to retreat
from his own surroundings and visit another living room.
Theme 2: Resisting the ST measure.
Sometimes clients would resist an ST measure, which according to staff members,
was because presumably for them, possible negative consequences of ST outweighed
any benefit of increased freedom of movement, as is illustrated by the examples
below.
Feeling stigmatized
When the electronic bracelets had been handed out to certain clients in the nursing
home, one of the clients, Mr. L, a client with dementia who was very agile and in
good physical condition, had been very explicit with regard to wearing an electronic
bracelet- having refused it when it was proposed to him by the nursing staff. As Mr.
L. did not have a tendency to wander, the staff in alliance with his daughter, decided
not to pursue this further for the time being, even though this meant that Mr. L. was
primarily confined to the living room. But Mr. L. did not seem to mind and several
weeks later, he was still very clear on the topic, conveying one of the reasons why
he did not want to wear a bracelet (field notes, 18 May 2010): Having taking Mr. L.
outside in the small adjacent garden of his living unit, I ask him once we’re seated:
What do you make of these electronic bracelets? ‘Well it is your freedom of course.
The others are constantly stopped’…And wearing a bracelet yourself? ‘I just do not
like it all.. They’d better not do that with me- then everybody will know you belong
to something.. like a patient..’
Missing the company
In the case of H, another client with ID who was given a GPS device to enable him
more freedom of movement, there was not an explicit (or verbal) refusal to the
device itself. H. rather resisted the fact that the ‘joint’ activity of walking which
required human supervision was changed into an individual ‘solo’ activity
accompanied by electronic supervision. Prior to the GPS device, H., who had
difficulty communicating verbally, would go outside every day for a walk together
with his support worker. According to his client file H. was raised on a farm and
“enjoys being outside when he can.” However once he was left to walk on his own,
H stopped going outside altogether. On the sunniest of days, with the door fully
open, H. would be seen sitting inside the living room of his unit showing no
intention of moving. When the cluster manager is interviewed 4 weeks later she says
the following (interview, 11 January 2011):
‘Yes- we had to reverse this measure eventually, even though we initially reasoned
the same with H -as with our other client who has GPS- that it would be better for
him…more freedom... We tried practicing, getting him used to walking on his own,
but each time he would go back in the house immediately, rain or shine…’
However after the reversal of this measure, H. was seen out and about again during
the afternoon with his support worker.
Not wanting to be ‘watched’
The last example shows a resistance by clients against the use of a camera in a semiresidential location. The camera that was placed, was there in order to fend off drug
dealers that had come by the residence. One particular client, M, who used drugs,
had bought drugs from them in the past, so as a first measure, the door was locked
from the inside, curtailing all the clients in their movement. This front door played
an important role for those clients who liked to smoke a cigarette, as they would
normally do this outside the front door. Because the door was locked the clients had
nowhere to smoke, unless a support worker would open the door for them when
they wanted to smoke outside. Therefore the location manager thought of the idea
of a camera. Prior to installment, all the clients were informed by the two support
workers, who told them that it was primarily a safety measure and not to “keep an
eye on them” (field notes, 2 December 2010). According to one of the support
workers the camera was a temporary measure, until ‘things die down a bit with M
and the whole drug thing’ (field notes, 2/12/10). But now every time clients wanted
to smoke a cigarette the camera would be hanging there, leading clients to state the
following (field notes, 9 December 2010): “that thing has to go away now- I don’t
care about the reasons, I want to be able to smoke my cigarette in peace” or: “I
can’t be myself around that thing” and (field notes, 10 December 2010): “I don’t
like it when there are cameras everywhere, if they hang up anymore then I would
‘sabotage’ them... otherwise you might as well live in prison…!’
The clients indicated that ultimately they would rather have the door closed and have
less smoking moments than have the camera present. Eventually it was decided that
the camera would be turned off (as indicated by a small red light) by the support
worker whenever the clients would smoke outside.
DISCUSSION
Often new care technologies such as ST are welcomed by care providers as they are
perceived to be an improvement compared to the previous situation (Welsh et al.,
2003), even though there is little empirical evidence on whether and how clients
might benefit from this technology.
The aim of this study was to explore how clients in residential care experience ST
and how this might influence their autonomy. As the ST used in both settings
consisted of such a broad range of devices (see Table 2), a certain distinction can be
made with regard to the specific function that ST devices have in conjunction with
how the client might experience it. The electronic bracelets allowed clients to wander
around in new spaces, thereby providing an opportunity for clients to retreat from
the company of others or to search for new company, but this increase in freedom
of movement could also lead to clients getting lost and distressed. In addition, by
seeing automatic doors opening up to certain clients, this triggers a reaction with
other clients who, when halted by a door might get agitated. Clients are also resistant
to wearing an electronic bracelet or a GPS tag, as possible negative consequences of
ST such as the stigma of wearing a bracelet or the loss of companionship might
outweigh any benefit of increased freedom, as was also the case with the use of a
camera, which contributed to a feeling of being watched.
How does ST influence the autonomy of the client?
In this study we found that ST might increase the autonomy of the client as it opens
up new spaces for clients in which they can choose to wander around in and retreat
from others, thereby creating a private space for themselves. However, although
there is a vast amount of literature which points to wandering as being necessary and
vital to the health of the client (Robinson et al., 2007, Wigg, 2010), it could be argued
that for wandering to be beneficial, it should be meaningful to the client. As Smith
et al. (2009) point out,
‘in too many instances [in nursing homes], people with dementia are left alone, often
with nothing to do. The losses that are a part of dementia—such as using language
to explain needs or to plan their day—interfere with their engagement in preferred
and meaningful activities. Too often, they wander aimlessly out of boredom, cry out
for company or comfort, or sit alone, disengaged from human and environmental
interaction’ (Smith et al., 2009).
Even if there are clearer motives with regard to wandering behavior, such as an
explicit need to withdraw from the company of others, clients can be limited in
fulfilling these needs successfully, due to their cognitive or intellectual disabilities
(including spatial disorientation), as was evidenced in our study by those clients
getting lost and/or upset.
The “ideal user” which certain ST devices such electronic bracelets presuppose,
namely an independence seeking agent who knows where to go and make meaning
of this, seems to be at odds with the needs of the actual user of ST, a vulnerable
person with dementia or ID, who might benefit from increased freedom but also
needs tailored support to actually be able enjoy this freedom. What seems to
underpin this presupposition is a deficient yet pervasive view of autonomy, which
according to George Agich is deficient in its abstract view of “persons as
independent, self-sufficient centers of decision making” instead of being sensitive to
“the complex conditions that actually support the unique identity of those
individuals needing long-term care.” (Agich, 2003).
Several health care professionals, ethicists and (patient) organizations have
advocated refocusing the aim of ST towards a more person centered approach
(Welsh et al., 2003; Perry et al., 2008; Alzheimer Europe, 2010), which in part finds
its origins in the work of Tom Kitwood and is concerned with the maintenance and
enhancement of personhood, by focusing on interpersonal relations instead of
disease processes or impairment (Kitwood, 1997; Gilmour and Brannely, 2010).
Staff intervention therefore need not come at the cost of autonomy, even though
these are viewed as strictly dichotomous categories in long term care (Agich, 2003;
Niemeijer et al., 2011). For instance, in their study on access technology, MargotCattin and Nygard (2006) found that staff intervention was intertwined with
autonomy, instead of being in opposition, stressing the importance of staff support
of residents with dementia for all activities including wandering.
The autonomy of privacy
Differences in devices also mean differences in the experience of privacy: electronic
bracelets enabled privacy by offering refuge from life in the unit, but cameras were
experienced as privacy intrusive. In the literature on ST, a distinction is hardly ever
made between enabling and intruding privacy- ST is generally viewed to be
inherently intrusive (Robinson et al., 2007; Hughes et al., 2008; Niemeijer et al., 2010),
instead of as something which might also enable privacy, and consequently
(personal) autonomy. This is underlined by legislation and several laws in European
countries such as in Scotland and Austria, which designate(s) all ST as a form of
restraint (Patrick, 2008; Heimafenthaltgesetz, 2011), by pointing to its inherent
restrictive quality, namely monitoring.
Clients in long term residential care already have limited privacy, as one of the
structural features of long term residential care is living together with other people
(who you did not choose to live with). Hence, clients do not have many options
with regard to creating ‘zones of intimacy’ for themselves other than their own
private bedrooms (Hauge and Heggen, 2008). The ability to create more privacy
could thus be perceived as one of the assets of ST, but the need for (and right to)
privacy and consequently autonomy should continually be (re-) assessed per
individual, so it becomes clear how the client experiences his freedom, rather than
simply respecting his “right to be left alone”(Agich, 2003).
Consent and visibility
Certain ST devices, such as electronic bracelets which are visible on the body, can
lead to (feelings of) stigmatization and result in refusals to wear them. By being able
to explicitly say ‘no’ to (new) ST measures, it could be deduced that clients in our
study were exercising their autonomy. However these were clients who were aware
of the device and able to communicate (well), due to their mild(er) cognitive
disabilities. At the same time, there were several clients who were not always aware
that they were wearing an electronic bracelet, or that it was the bracelet which
opened up doors for them. Although a client does not need to be aware of ST in
order to make use of it, it does pose problems with regard to being able to consent
to ST, which requires some form of volition, i.e. intentional choice. The fact that
several ST applications are barely visible as they are designed to be unobtrusive (such
as the motion sensors and audio surveillance which were embedded in the walls, but
also the GPS tags sewn into the coats of clients) means that the less obtrusive devices
are, the less aware clients are of their presence. This might ultimately result in higher
(involuntary) compliance, as it difficult to grasp (the effects) of an ST measure which
cannot be observed. Informed consent, “assent” (Black et al., 2010) or (other)
inclusionary approaches of supported decision-making (Peisah et al., 2013) might not
provide sufficient safeguards to invisible or unobtrusive technology.
Limitations
Accessing experiences of people with cognitive disabilities such as dementia or ID
is complex and can be considered challenging (Nygard, 2006), thereby raising
questions with regard to reliability of the data. We chose the method of participant
observation where behavioral observation was central and used the additional
interviews with staff and relevant others and information from the clients’ files to
create a better understanding of these experiences. Although there is a risk in
including other perspectives as it could lead to conflicting perspectives and
contradicting information (Margot-Cattin and Nygard, 2006), observation alone
would probably not have elicited as much variety and richness of information,
including comparisons with the situation before the implementation of ST.
Also, the limited size of the study population could raise questions with regard to
the possible restricted (external) validity of its results. Data collection was limited to
2 residential care settings in the Netherlands and involved the observation of a
relatively small number of examples of particular experiences. However due to the
explorative nature of our study we focused on the extent of variation in which the
observed situations occurred, and how exemplary these situations were, rather than
statistical frequency (Glaser and Straus, 1967; Corbin and Strauss, 2008).
Nevertheless, we are of the opinion that the experiences we describe are tenable in
other care nursing homes and residential care facilities for people with ID, including
those in other countries. This, however, is an issue that warrants further study.
CONCLUSION
Although coping involves managing a (stressful) situation, it does not necessarily
mean mastery (Lyon, 2012). As clients cope with new spaces due to ST, they may
manage or not manage at all, but any ‘managing’ can be (too) taxing and can also
lead to resistance or refusal. It is this ambivalence which is characteristic for how
clients might experience ST. This is in part owing to the variety in ST devices, with
each device bringing its own connotations and experiences, but also lies in the
devices’ presupposition of an ideal user, which is at odds with the actual user, who
is inherently vulnerable. What is more, unforeseen spin-off effects of ST measures
sometimes take on more significance than the main purpose it was intended for,
making it difficult to predict how clients will experience ST.
Thus ST in residential care should not be approached in a black and white manner,
as being either positive or negative, but rather as something which can only
contribute to the autonomy of clients, if it is set in a truly person- centered approach,
tailored to the individual with his strengths and needs. For this reason continual and
critical evaluation of and reflection on how each individual ST measure is
experienced by clients is recommended, whereby clients are not simply left alone,
but staff aim to support and give meaning to all ST related activities of people with
dementia and ID.
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Black, B.S., Rabins, PV, Sugarman, J. and Karlawish, J.H. (2010). Seeking Assent and
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Boekhorst, S. Te, Depla, M.F.I.A., Francke, A.L., Twisk, J.W.R., Zwijsen, S.A. and
Hertogh, C.M.P.M. (2013). Quality of life of nursing home residents with dementia subject
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Corbin, J. M., & Strauss, A. L. (2008) (3rd Ed.). Basics of qualitative research: Techniques and
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Eltis, K. (2005). Predicating dignity on autonomy? The need for further inquiry into the
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Gilbert, T. Involving people with learning disabilities in research: issues and possibilities.
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Gilmour, J and Brannelly, T. (2010). Representations of people with dementia. Subaltern,
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Glaser, B.G. and Strauss, A.L. (1967). The discovery of grounded theory. Chicago: Aldine.
Hauge S and Heggen K. (2008). The nursing home as a home: a field study of residents’
daily life in the common living rooms. Journal of Clinical Nursing, 17: 460–467.
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Stand der Gesetzgebung: 1. Juli 2011 Österreich.
Hertogh, C.M.P.M. (2005). “Between autonomy and security: Ethical questions in the care
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(Eds.). Care-giving in Dementia (pp. 375–390). East Sussex: Brunner-Routledge.
Hoare, KJ, Buetow, S, Mills, J and Francis, K. (2012) Using an emic and etic ethnographic
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Hughes, J.C., Newby, J., Louw, S. J., Campbell, G., and Hutton, J. (2008). Ethical
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Kitwood, T. (1997). Dementia Reconsidered: The Person Comes First. Buckingham, U.K.: Open
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Lincoln, Y, & Guba, E. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage.
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Margot-Cattin, I. and Nygard, L. (2006). Access technology and dementia care:
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Hertogh, C.M.P.M. (2010). Ethical and practical concerns of surveillance technologies in
residential care for people with dementia or intellectual disabilities: an overview of the
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Hertogh, C.M.P.M. (2011). The ideal application of surveillance technology in residential
care for people with dementia. Journal of Medical Ethics; 37(5): 303-10.
Nygard, L. How can we get access to the experiences of people with dementia? Suggestions
and reflections. Scandinavian Journal of Occupational Therapy, 2006; 13: 101-112.
Patrick, H. (2008). Autonomy, benefit and protection. How human rights can protect people with mental
conditions or learning disabilities from unlawful deprivation of liberty. Mental Welfare Commission for
Scotland. Edinburgh, pp. 1–52.
Peisah C, Sorinmade OA, Mitchell L and Hertogh CMPM. (2013). Decisional capacity:
toward an inclusionary approach. International Psychogeriatrics, 7: 1-9.
Perry, J., Beyer, S. and Holm, S. (2008). Assistive technology, telecare and people with
intellectual disabilities: ethical considerations. Journal of Medical Ethics, 35, 81-86.
Robinson, L., Hutchings, D., Corner, L., Finch, T., Hughes, J.C., Brittain, K. and
Bond, J. (2007). Balancing rights and risks: Conflicting perspectives in the management of
wandering in dementia. Health Risk and Society, 9, 389-406.
Smith, M, Kolanowski, A, Buettner, LL and Buckwalter, KC. Beyond bingo: meaningful
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22-30.
Welsh, S, Hassiotis, A, O’Mahoney, G and Deahl, M. (2003). Big brother is watching
you: the ethical implications of electronic surveillance measures in the elderly with dementia
and in adults with learning difficulties. Aging and Mental Health, 7: 372–375.
Wigg, J. (2010). Liberating the wanderers: using technology to unlock doors for those living
with dementia. Sociology of Health and Illness, 32, 7, 288-303.
Zwijsen, S.A., Depla, M.F.I.A., Niemeijer, A.R., Francke, A.L. and Hertogh,
C.M.P.M. (2012). Surveillance technology: an alternative to physical restraints? A qualitative
study among professionals working in nursing homes for people with dementia. International
Journal of Nursing Studies, 49 (2), 212-219.
Chapter
7
Responsible and careful
application of surveillance
technology in residential
care for people with
dementia or intellectual
disabilities: a guideline
for residential care
settings (English
summary)
Niemeijer, A.R., Depla, M.F.I.A.,
Frederiks, B.J.M. and Hertogh, C.M.P.M.
Published as:
Niemeijer, A.R., Depla, M.F.I.A., Frederiks, B.J.M. and Hertogh C.M.P.M. (2012).
Verantwoorde en zorgvuldige toepassing van toezichthoudende domotica in de residentiële zorg voor mensen
met dementie of een verstandelijke beperking: Een handreiking voor zorginstellingen). Amsterdam:
VUMC.
ABSTRACT
The following text is the English summary of the guideline that was developed as a result of
the research of this thesis and was published in Dutch. This summary will cover an
introductory chapter on the development of the guideline, including a reading guide; an
abridged version of all the normative themes as described in the guideline and a full
translation of the key points for a responsible application of ST.
INTRODUCTION
R
esidential care settings for people with dementia or intellectual disabilities
(ID) are making increasing use of assistive living technologies (ALT). On
the one hand ALT offers support to clients in their daily lives and on the
other, there is a surveillance form of ALT which is primarily directed at restricting
and safeguarding the client. This latter form of ALT can also serve as an alternative
to fixation and other traditional forms of restraint. ALT is, therefore, a promising
development, but at the same time the use of surveillance forms of ALT evokes
ethical and legal questions.
This practice guideline deals with these ethical and legal questions in detail. The aim
is for anyone who is considering making use of surveillance technology (ST) for long
term care to get a better insight into its implications. What are the consequences for
the care relation when the caregiver exercises his monitoring function at a greater
physical distance? How does the client experience ST: as an extension to his freedom
of movement or as an infringement of his privacy. In how far is the technique itself
safe?
At the moment there is still no vision of care or policy development in residential
care for vulnerable people as regards the daily application of ST. The conclusion of
research done by the Dutch Health Inspectorate (IGZ) in 2009 was that the
implementation of ST in long term care should be executed with more attention and
that it lacked vision with regard to the significance of ST for clients.
This practice guideline wishes to provide a stepping stone towards outlining a
guiding framework for residential care settings wishing to implement ST. It leaves
enough room for care providers, professional organizations and professionals
working in the field to specify and define the norms themselves in a more detailed
way.
Development of the Guideline
The basis for this practice guideline was the result of the research as presented in
the other chapters of this thesis, which was started at the VU Medical Center in
Amsterdam, The Netherlands in 2008. Members of the research project group
included: A.R. (Alistair) Niemeijer, M.A. (PhD student), C.M.P.M. (Cees) Hertogh,
M.D., PhD (project leader), B. J.M. (Brenda) Frederiks, LLM, PhD (project
supervisor), and M. F.I.A. (Marja) Depla, PhD (project supervisor), J.A. (Jan)
Eefsting, M.D., PhD (external supervisor) and J. (Johan) Legemaate, LLM, PhD
(external supervisor).
As stated in the introduction of this thesis, this research entailed a multi-step
approach whereby the following methods were used: a literature review, two concept
mappings, an explorative survey and ethnographic field study. Next to the research
findings, the input for this guideline consisted of several reports by the Dutch Health
Inspectorate, legal documents on current (national and international) legislation with
regard to ST and international guidelines on the use of technology for people with
dementia or ID (Alzheimer Europe 2010, Bjørneby et al. 2001; Mahoney et al. 2007,
Perry et al. 2010).
In addition, experts and key figures in the field of care were involved as an external
supervisory committee, as well as the professional organizations (NVAVG and
Verenso), the branch organizations, the Dutch Health Inspectorate and
representatives of client organizations. This external advisory committee consisted
of the following members: Tineke van Sprundel (Actiz); Alice Dallinga (VGN);
Majorie de Been (V&VN); Jenneke van Veen, (IGZ); Yvonne van Gilse (LOC,
Zeggenschap in zorg); Mieke van Leeuwen (Platform VG); Frans Ewals (Erasmus
MC); and Robert Helle (KNMG).
The supervisory committee was closely involved with the selection of the expert
panels for the concept mapping and also during the analysis of the ethnographic
field study. With regard to the development of this guideline, several meetings were
held with the supervisory committee to discuss the content of (earlier versions of)
the guideline. Eventually all remarks were incorporated in a definitive version.
Reading Guide
For whom is this practice guideline intended?
This practice guideline is intended for the policy officers of care settings who are
considering making use of surveillance technology (ST). They can use this guide to
apply ST in a careful and responsible way in their institutions.
What kind of technology is involved?
This guideline deals with the normative aspects of ST, such as monitoring devices,
sensors, camera surveillance and GPS technology. The guideline, therefore, does not
deal with supporting forms of ALT, such as automatic lighting and ‘smart’
household appliances and neither does it deal with medical technology such as a
heart monitors.
Which institutions are involved?
This guideline is intended for residential care settings and small scale living
accommodation for people with dementia or ID. This does not imply that there are
no differences between both care sectors. That is why this guideline leaves room to
the professionals working in the field to adjust the views presented here to their own
situation. For the same reason the guideline could also be used for domestic care,
although that is not its main focus.
Section 2 and 3
Section two is an abridged version of the original section and describes and explores
very briefly the normative dilemmas which are linked to the application of ST. It
offers the reader an insight into the backgrounds of section 3. Section 3 deals with
points of consideration for a responsible and careful application of ST.
SECTION TWO: NORMATIVE ISSUES
In this section the most important normative (ethical and legal) themes are briefly
explored, related to the application of ST in the residential care of people with
dementia or ID. We conclude with a paragraph in which a stepping stone is given
for weighing up these different values. The contents of this section are based on
literature studies and empirical research in care practice.
1. Safety
One of the main reasons for care settings to decide to use ST is that it might ensure
or increase safety (Nicolle 1998; Niemeijer et al. 2010). It is expected that the number
of incidents is reduced through ST and the client’s safety is increased.. Because the
caregiver can see or hear what is going on (the client for example might be falling
out of bed), he or she is able to intervene directly.
But does ST actually offer more security? As of yet there is no empirical data
available which might confirm this. However, according to a study in the nursing
home sector, the nursing staff here is not always sure whether this is the case (Depla
et al., 2010). It is therefore important to have realistic expectations of ST. ST might
provide security to clients, in the sense that they can signal that something bad such
as a fall is about to happen, they however cannot avert this impending fall less
conclusively than traditional means of freedom restriction. Thus, the security ST can
offer is thus always a safety with risks. This fact should be recognized and requires,
in many care settings- and society at large- a different kind of attitude when dealing
with safety and risks.
2. Freedom restriction
Electronic surveillance seems at first sight more desirable than the Swedish band,
but are certain types of ST in itself not just as restrictive? An electronic barrier, albeit
not physical, is still a barrier that is not to be broken. Some have therefore called ST
a mild form of freedom restriction.
At the very least ST is often used instead of more (severe) traditional means of
restricting freedom but nevertheless with the same goal. For instance, in an attempt
to define norms for responsible care in the nursing home sector, several care
organizations classified ST in 2005 as ‘safety increasing’ measure, instead of as a
restricting measure (Het toetsingskader voor Verantwoorde Zorg, 2005). Of course
this is only an arbitrary difference since classical physical restraints were and are also
used with the intent of increasing the safety of the client (and in the past was called
a ‘protective measure’ as well). There are several countries where the use of certain
types of ST are viewed as restrictive to the clients’ freedom, for example, Austria
(HeimAufG, 2011). Currently in The Netherlands, the law does not view ST as a
form of freedom restriction, although the forthcoming law on the use of restraints
‘Zorg en dwang’ (Care and coercion) does, under certain circumstances view ST as
‘involuntary care’ (Kamerstukken 31996).
3. Autonomy
In addition to offering more safety, a second important reason to apply ST, is that it
might increase the client’s autonomy. Think for instance of a GPS chip in a client’s
shoe, as a result of which they can move more freely and can (partly) decide for
themselves where they want to go. Originally, respect for autonomy could be viewed
as the person being able to decide him/herself what should happen to him/her,
instead of others determining this for him/her (paternalism). Being able to lay down
laws (nomos) oneself (auto) can then be viewed as the freedom to make personal
choices or have personal control.
However, clients cannot always express their wishes adequately, due to their
cognitive disabilities. Therefore it is important to analyse their behavior and interpret
the meaning and significance of this as often as possible. For instance, wandering
behaviour can be based on various motives and meanings, such as the need to relax,
the wish to go for a walk or the desire to withdraw from the company of others for
a while. This also applies to ST. For example, GPS might be seen as an
‘improvement’ as it offers the client more freedom than a closed door, but this might
not necessarily be the client’s perspective. The moment he is not allowed to go
outside anymore without a GPS system could mean not a step forward (with respect
to the closed door), but a step backward (when a client is used to going outside under
personal accompaniment and values this greatly). This client too will not experience
this as an increase of his possibilities, because he does not want to go outside alone
(anymore). For this reason it is therefore important to reflect on each different
application from the perspective of the client himself.
4. Privacy
Ethics and law distinguish between two types of privacy which are relevant to ST.
Firstly, privacy regarding sensitive information, such as personal data, and secondly,
privacy in the sense of being alone undisturbed (also called spatial privacy). Although
it is sometimes argued that GPS technology only invades privacy if the client in
question tries to hide and does not want to be found (McShane, 1994), there is much
concern about the fact that the use of ST harms both forms of privacy (Niemeijer et
al., 2010).
The first concern is the question what happens to the collection of data and whether
the material is really stored safely. In principle it is recommended that videorecordings are kept for a limited period (1 week). Yet there can be valid reason to
diverge from such a storage-period, such as after an incident occurred, where a care
setting must provide data in the form of a log book. Not only in order to ascertain
what exactly happened, but also to check if ST was applied in the right manner.
The need for spatial privacy differs from person to person and from situation to
situation. It is therefore important to observe well and get to know clients as well as
is possible. That which one considers an infringement of his or her privacy, need
not be a problem at all for somebody else. The point here is not only to respect their
privacy, but also to protect their dignity. Clients who are used to ‘surrendering’ their
privacy during their personal care (and do not experience this contact as an
infringement of their privacy), can find it disturbing to be monitored (and do
experience this as an infringement of their privacy). Their personal care is given by
someone with whom they have a reciprocal bond, whereas the surveillance is done
by a non-reciprocal, electronic application, where the question is whether the client
knows who is behind the monitor and in how far this person is sympathetic towards
him or her.
5. Informed consent
The principle of informed consent is a corner stone of modern ethics and health law
and also applies to people with dementia or ID. To obtain consent for care and
treatment, the client must have the appropriate and detailed information. A client
can only give valid informed consent if he/she is capable of understanding the
information and making a meaningful choice. It is the task of the caregiver to
provide the information and to adjust this to the (remaining) capabilities of the client.
There is, however, a limit to this adjustment. If someone can only absorb the most
basic of information about an impending decision, the question arises if one can still
speak of informed consent.
The law requires that the information is adjusted to the (mental) capabilities of the
client. Informing and asking consent or assent from clients about surveillance
demands a lot of creativity and empathy of caregivers. In addition clients are
sometimes prone to being easily swayed. Cooperative behavior can wrongly be
interpreted as consent to surveillance, and forms of resistance in their turn need not
mean that a client does not want to cooperate with the use of surveillance.
However, non-visible or barely visible technology (as discussed in the following
paragraph) also has implications for giving consent or assent, because understanding
invisible technology can become too abstract. The increasing invisibility of
technology like ST has far reaching implications for the informed consent doctrine,
because to what extent can informed consent be achieved with non-instrumental,
non- visible, non-operated, automatic-in-the-background technology and how can
one resist technology which cannot be observed? (cf. Mordini and De Hert, 2010).1
6. The visibility of technology
In this paragraph we discuss the physical characteristics of ST. ST applications are
sometimes spatial objects and therefore visible to the clients and other users of that
space. This puts demands on the design of ST. One of those demands is that ST
should not be too visible; it should not impose. Too large an obtrusiveness is seen
as one of the negative aspects of ST (Zwijsen et al., 2011). If it is evidently visible to
everyone that the client needs care, then that is unnecessarily confrontational.
Besides spatial visibility there is also the potential problem of visibility on the body,
for instance wearing an electronic bracelet. That can symbolize vulnerability and
dependence for some people and therefore lead to feelings of stigmatization. This is
reinforced by the negative associations which these bracelets or wristbands evoke,
because they are also applied to prisoners (Bail, 2003).
One way to compensate too great a visibility of ST is by using the principles of
‘universal design’. This means that the application is designed in such a way that it is
attractive to use to anyone (whether you need it or not). Thereby it is made socially
acceptable and devoid of its stigmatizing nature (Parette and Scherer, 2004; Perry et
al., 2008). Another way to make the application literally less visible. Although this
can be viewed positively from a point of view of obtrusiveness or possible
stigmatization, it could also have less positive consequences for the client, in
particular to his ability to resist the application, as was discussed in the paragraph.
7. The care relation
Because ST takes over (a part of) the surveillance task of the (primary) caregiver, the
use of ST has implications for the care relation between caregiver and client. To
begin with, one must be aware of an attenuation or of a reduction of the contact
between caregiver and client. From our research it appears that checking clients (for
N.B. This observation on the invisibility of ST and the implications for informed consent, can
originally be found under paragraph 6. ‘The visibility of technology’ of the Dutch version.
1
example if they are lying safely in bed) is not only a pretense of personal contact for
many caregivers, but also that surveillance and control even coincides with offering
personal attention. If these tasks were left out and the physical presence of a
caregiver is no longer required, there would automatically be fewer primary contact
moments. The tasks of the caregiver then change from caring and supporting into
monitoring. One could wonder whether human contact is not indispensable with
regard to this particular group vulnerable people. Without a carer nearby, especially
during the night, clients might feel less safe and alone. What is more, for certain
clients the contact with care staff is ther only form of social interaction (Perry et al.,
2008). Similar concerns have been expressed by professional caregivers, who
understand the role of human contact and connection in providing optimal care and
fear that technology could lead to “dehumanized” care (Sävenstedt et al., 2006).
Caregivers are not guards who monitor, but people who care for other vulnerable
people.
8. Responsibility
This last normative issue concerns the question who is responsible for the
application of ST. On the one hand this involves the responsibility for the (medical)
indication, and on the other hand the final responsibility for the adequate
functioning of the application. The present legal framework does not specify who is
finally responsible for the indication of ST. In the forthcoming law on the use of
restraints ‘Zorg en dwang’ (Care and coercion), ST is viewed for the first time as a
risky and possibly involuntary treatment- the responsibility for the indication is
relegated in principle to the responsible caregiver. But it could also –contrary to
medication and freedom restriction- be an expert, to be determined later, who is
appointed by ministerial decree (Frederiks et al., 2009). It would, moreover, matter
if electronic surveillance and or monitoring is needed for medical reasons (such as
epilepsy or for a client in a terminal phase), in that case the medical authorities or
physician is legally responsible for a correct application. Because the application of
ST entails weighing up the various alternatives, it is recommended to prescribe a
multidisciplinary approach in the decision-making process regarding ST, just as in
the case of physical restraints, in which medical competences are represented as well
as behavioral and caring competences.
By separating living and care the question of final responsibility for the adequate
functioning of ST is more complex than with other interventions. It increasingly
happens that care settings rent accommodation from housing corporations and that
these have already installed (part of) the ST. The question is where the responsibility
of the corporation ends and that of the care setting begins. With the purchase of
new ST from an external manufacturer the question also arises who is responsible
for what. If a client for example is severely disadvantaged as a result of failing
equipment, it is not clear who is responsible or liable for this: the manufacturer or
the care setting. It should also be clear how maintenance is put in place. Therefore
it is important that attention should be paid to this when performing a risk analysis.
9. Weighing-up values
As a kind of normative checklist, for each client for whom ST applications are
considered, the following should be answered:
What added benefit is envisaged with the application?
In this chapter two reasons are mentioned to begin applying ST to a client:
guaranteeing his security (§2.1.) and increasing his/her autonomy (positive freedom)
(§ 2.3). It is recommended with the application of ST to first of all ascertain which
added benefit one expects to gain in concrete terms with respect to one of these two
values. In which way will this specific application enhance the safety and/ or
autonomy of this specific client?
What are the negative consequences for the client?
Consequently it is important to define the possible reverse effects of the application
of ST for the specific client. This concerns the consequences for his/her freedom
of movement (§2.2), his privacy (§2.4) and the care relation (§2.7). In what way does
the application infringe on the client’s freedom of movement? How far will the client
experience the application as an invasion of his/her privacy? As stated before, the
need for privacy can differ from person to person and from situation to situation. It
is therefore important to specify this for the client concerned. The same goes mutatis
mutandis for the consequences of the care relation between client and professional.
How visible is the application?
In addition it must be clear how (in) visible the application itself is (§2.6). Is it not
too invasive on the one hand and also stigmatizing? On the other hand is the
application visible enough to the client?
How well can this be explained to the client?
Finally, consent must be asked from the client and/or his/her proxy (§2.5). Even if
a client has diminished capacity with regard to ST, he/she must be involved in the
decision-making process. Then his/her assent should be sought, in which in any case
the client (understands) the implications of the application correctly.
By weighing up these questions of the various values involved, it becomes clear what
is most important in every individual case. Then the multi-disciplinary view of the
clients’ behavior can be important to come to a better understanding of the
experience of the client. The added value of the application for the individual client
must be evident for all those involved at all times.
SECTION THREE: RESPONSIBLE AND CAREFUL
APPLICATION
In this section points of attention are formulated which a responsible and careful
application must comply with. These points are based on the normative framework
that is described in chapter 2.
The following viewpoints are dealt with:
1)
2)
3)
4)
5)
Before purchasing and implementing of ST
Application of ST for clients
Application of ST by caregivers
The technology of ST
Responsibility and evaluation
1. BEFORE PURCHASING AND IMPLEMENTING ST
Before purchasing and implementing ST, management should reflect – in
consultation with staff- on what the organization aims to do with ST, which
organizational terms must be met, and what risks (for the organization as a whole
and individually per client) are attached to these. Any (self-respecting) organization
draws up a risk analysis at organizational level annually. The theme of ST could be
part of that. A responsible and careful application of ST implies that the care setting
has reflected on the questions which were evoked in the normative framework and
it that is aware of the consequences of ST for clients and staff.
Vision on ST
Vision on surveillance
Before developing a vision on ST it is fitting to develop a vision on how the care
setting aims to regulate the surveillance in general. Under surveillance is meant in
this respect: the way in which clients are protected, guarded and checked. With
regard to this, questions should be answered such as: how much and how often is
surveillance necessary? How do we see the relation between personal monitoring
and electronic monitoring? At what price do we want to check the clients’
surroundings? Which accidents do we want to prevent at all times, or which risks
are we willing to take in favor of the clients’ freedom (of movement) and privacy.
Vision on ST
Different aims may be achieved by ST: enlarging or maintaining freedom and or the
agency of clients; an increase of the safety of clients; as an alternative for physical
restraints, reduction of staff during night (and/or day). It is recommended to
indicate per different type of ST which aim the care setting tries to achieve and which
disadvantages result in terms of freedom (of movement) and privacy for clients.
Vision on general versus individually applied ST
The starting point is that ST is applied on the basis of individual (medical) indication.
This does not mean that general applications can also be needed. For example,
camera surveillance at the entrance of the care setting and door codes. It is important
to explain and motivate these applications in a correct manner.
Risk analysis
Risk analysis of ST
The care setting should be aware of the possible failings and shortcomings of ST by
means of a risk analysis. These should be analyzed per type of ST as much as
possible.
Failing technology
Technology is fallible and can stop working. It is therefore important that an
emergency protocol or scenario is prepared which can be used when something goes
wrong (for example in the case of loss of electricity by fire of lighting, or the loss of
a chip by client). Furthermore, it must be clear when the application is still on and
when it is not on anymore. Moreover, there could also reports of situations, which
on further inspection, need no intervention. The risk of this is that gradually a kind
alarm fatigue can develop with staff, as a result of which they respond to signals less
acutely. The management should be prepared for this and take measures to prevent
alarm fatigue.
Consequences for staff
Making consequences transparent
The introduction of ST always has consequences for staff. It is recommended to
define these consequences as well as possible and to discuss them, so that neither
management nor staff are faced with surprises. One can think of more care at a
distance, less personal contact with the clients and monitoring more clients at the
same time (who are less well known as a result).
Consultation
Staff consultation
It is recommended to consult (representatives) of all disciplines who work in the
care setting and to involve them with the purchase and implementation of ST. That
does not only result in valuable input for the vision, risk analysis and taxation of the
consequences for the staff; it also probably improves the chances of a successful
implementation of ST.
Client and family consultation
The client (representatives) council and clients and proxies should also be consulted
about the possible advantages and disadvantages of ST.
2. APPLICATION OF ST FOR CLIENTS
A responsible and careful application of ST implies that ST is not applied in a
standard manner, but that the already formulated advantages and disadvantages of
ST (as laid down in the vision statement of the care setting) will have to be examined
again and again in each specific case and that the client should be involved in this.
ST made to measure
Individual application
The fact that ST is available is no reason to apply ST in every individual case. The
use should be considered with every individual client.
Personal added benefit
ST should have an added benefit for the clients to whom it is applied. This means
that benefits are attached to the application of the measure which suit the wishes,
needs and (functional) capabilities of the clients. This added benefit can be found in
the support of somebody’s need for agency, or the need of a client to move more
freely, or in the need to offer him/her more safety.
Subsidiarity – proportionality – effectivity
When the restriction of the freedom or capabilities of the client as a result of the
application of ST is predominant as regards the personal added benefit of the
application, the application should always meet the requirements of subsidiarity,
proportionality and efficiency. This means that the application should be the least
invasive option (subsidiarity), should be in relation to the aim to be achieved
(proportionality), and be successful in realizing that aim (effectivity). It should be
made clear that all possible alternatives (such as human support and behavioral
interventions) have already been explored and that the client truly needs the measure
in question.
Informed consent
Information prior to admittance
Before a client moves to a care setting, the client and/or his/her proxy should be
informed about all the ST applications that could possibly be used within the care
setting. They must be informed both the added benefit and the risks of the
applications.
Informed consent client
ST can only be applied with the informed consent of the client and/or proxy. It is
expected from the caregiver that the latter adapts the information to the client’s level
of understanding. If the client in question has diminished capacity, the care setting
or the caregiver should ask (informed) consent from his/her proxy.
Assent client
If the client cannot consent him/herself, his/her assent should be sought. Assent
implies that the client has been able to form an idea/understanding of the application
and that it can be deduced from his/her response that he/she does not object to it.
Consent of the proxy does not free the care setting from the obligation to consult
the client him/herself. That means that on the one hand, the care setting does
everything to explain (the implications of) ST to client as well as possible (for
example by the use of graphic symbols or a practical demonstration); and that on
the other hand, one uses all the verbal, behavioral and emotional reactions of the
clients to form a correct picture of his/her wishes as regards ST.
Resistance to ST
Possible ways of resistance of the client to the application of ST must always be
taken seriously, no matter how strange or illogical they look. It should be investigated
whether they are based on a wrong picture of reality or if there is really no
consent/assent. In the first case it should be attempted to take away the worries of
the client by explaining the application better. In the second case an alternative to
the application should be sought.
Repeated consent/assent
Clients with memory problems will easily forget that they have consented/assented
to a certain application. Therefore an affirmation should be sought in every care plan
meeting or discussion of their consent/assent. The ways of communication as
describe above (graphic symbols and or practical demonstrations) can be used for
this. If there is no consent/assent of the client and if he/she resists the application,
the staff member should report this in the file. In that case we speak of force.
Privacy
Proportionality
ST must not disproportionally harm the client’s privacy.
Private rooms
In bedrooms, toilet or bathroom, camera surveillance and audio surveillance are only
permitted if it is strictly necessary to avoid serious harm to the client him/herself or
other or to prevent that. If the use of video and audio surveillance is considered
necessary, it should also be possible to switch of the device in an individual situation.
For example, if there is care staff or family present and there is no need for electronic
surveillance at that time.
Storage video and audio recordings
Video and audio recordings should be destroyed within a short period (for example
one week), unless there are legitimate reasons for not doing so, such as after an
incident, when the care settings will have to provide log data to the Health
Inspectorate or the client/proxy because of a complaints procedure. The care setting
must have a clear policy on the storage of video and audio material.
Stigma
Stigma
To prevent stigmatization and feelings of shame or embarrassment among clients,
the application of ST must be applied as discreetly as possible. This concerns both
visibility of the application (e.g. electronic bracelets) as well the noise of the
application (e.g. of the volume of alarm signals).
Consequences for other clients
Weighing up the consequences for other clients
The application of ST for a client can have negative consequences for the other
clients with whom he/she shares a ward or communal living area. A good balance
must be found weighing up the advantages of ST for the client in relation to the
possible disadvantages of this application for his/her fellow- clients (in terms of
reduced freedom of movement or privacy). These considerations must be noted in
the care plan of the clients involved.
3. THE APPLICATION OF ST BY CARE STAFF
A responsible and careful application of ST presupposes that the staff who are going
with ST are aware of the advantages and disadvantages of ST and that they know
how they must use the various applications.
Training
Awareness
To make staff members more aware of the advantages and disadvantages and risks
of ST a schooling plan is needed in which they learn to make ethical decisions in
cooperation with each other. It is recommended to involve staff members in the
formulation of the vision and the risk analysis (see consultation staff) and to
familiarize themes from the normative framework (what does ST mean for the
privacy, safety, freedom of movement etc. of the client?). To prevent the vision from
becoming a dead issue, the management must expound the vison on ST actively in
the care setting and transpose it to the working area.
Knowledge of the guideline
Staff must be informed about and have access to the relevant normative decisions
and points of attentions for them for a responsible and careful application of ST.
Technical expertise
A further requirement for a responsible application of ST is that the staff is trained
in a technical sense in the use of the various applications. Staff members must feel
adequately equipped to work with ST (how to operate, how to regulate, how to
respond to signals etc.). Because of the risk attached to wrong use it is recommended
to repeat this training periodically.
Knowledge of the client
When applying ST the risk can arise that there can be numerous incoming signals at
the same time for a staff member. To know which signals should be given priority a
thorough knowledge of the care needs and behavioral patterns of the clients who
are linked to the ST system is required.
Rights of staff members
Right of information
With some kinds of ST not only the goings on of clients are registered but also the
conduct of staff member who look after them or monitor them. Staff members have
a right to know in which situations they are being filmed or monitored in other ways
and what are the implications of that.
Right to privacy
As cameras and audio surveillance are used on a larger scale, staff members are less
able to withdraw from surveillance in their workplace. The management must be
fully aware of this consequences of ST for their working staff. It is important that
staff members can at least withdraw into a room without ST during their break.
4. THE TECHNOLOGY OF ST
A careful and responsible application of ST means the technology itself also needs
to meet certain demands. It is thus important that ST is user-friendly and reliable.
User friendly
User friendly
ST must be easy to use. This is especially true for the staff member, but also – when
applicable – to the client and his family. By this is meant that the use of ST does not
require a high level of educational training and is easily transferable.
Reliable
Emergency protocol
Technology is fallible and can break down. It is therefore important that there is an
emergency protocol that can be used if something goes wrong.
Regulating the alarms
When there is a high frequency of false-positive alarms, it should be investigated if
the system is regulated to sensitively. It must be prevented that staff members do
not take these signals serious anymore (see also fallible technology)
Maintenance
Periodical maintenance checks should be in place. For this a maintenance contract
should be drawn up with an external party.
Repairs and availability technical support
There must be clear arrangements about the availability of the technical support staff
in case something goes wrong or in case something does not function well anymore.
If something needs to be repaired this should be done quickly, as part of the
maintenance in which ‘quickly’ is defined in hours or days.
Standard settings
Automatically off
To do justice to the viewpoint that the use of ST is assessed per client (see individual
application). The devices are only switched on and comply to the agreements as they
have discussed and have been noted in the care plan (see multi-disciplinary …). The
standard setting is that the device is switched off.
5. RESPONSIBILITY AND EVALUATION
Finally there is the issue of the responsibility and evaluation of ST which need to be
addressed. It must be clear who is responsible and for what and how the use of ST
is evaluated
Client level
Multidisciplinary descision making
The decision to implement a certain type of ST for a specific client must be made in
a multidisciplinary setting. This should entail staff with medical, behavioural and
nursing background.
Nightshift
If the ST in question is meant for use during the nightshift it is necessary to include
nightstaff in the decision making process
Careplan
If the decision to implement ST is made this should be noted in the careplan of the
particular client in a standardized and straightforward way with the mentioning of
the indication and the envisioned goal. The careplan should also mention the
additive value of the specific ST as well as remarks on the aforemention criteria of
subsidiarity, proportionality and efficacy.
Periodic evaluation
The use of a specific type of ST for a particular client should be evaluated regularly
(see decision on careplan AWBZ care). These evaluations should make clear whether
or not the use of the ST for this client is still the most suitable option (is the ST still
benficial to the client?), especially in light of potentially changed needs, abilities and
circumstances of the client. Especially if the ST in question potentially has far
reaching consequences its use should be evaluated more frequently and the demands
for implementation should be more stringent.
Administrative level
Responsibility
It must be clear who is responsible and competent for which part of the
(implemtation of) ST. A difference must be made here between general use and
individual use of ST as well as between the responsibility for the implementation
process of ST and the actual use of ST (see page 50 multidisciplinary decision
making).
Errors in equipment
For responsible and optimal use of ST several disciplines are necessarily involved.
The administration of the care institution must be aware of the responsible parties
for each part of the process (i.e. supplier versus care institution, maintenance).
Periodic evaluation
The use of ST must be evaluated periodically. It is recommended to include both
staff, clients and proxies should partake in these evaluations. The staff should be ask
to comment on reasons for changes in use of ST, difficulties in the use of ST,
consequences of ST for both staff and clients; etc. The clients and/or their proxies
should be included in the evaluation of the use of ST. Here also it must be the goal
to stimulate clients as much as possible in their communication about their insights.
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Chapter
8
GENERAL
DISCUSSION
OVERVIEW
The aims of this thesis were the following: to give an empirical-ethical analysis of
the application of surveillance technology (ST) in light of what can be described as
a paradigm of good care, and to present recommendations for practice, policy and
future research. In the following discussion chapter, a summary of the main research
findings of the preceding chapters 2-6 is presented, followed by a reflection on the
main findings, focusing on three key issues. Subsequently methodological
considerations are discussed, followed by concluding remarks. Finally, the
implications and recommendations for practice, policy and future research are
addressed.
MAIN FINDINGS
T
he literature review in Chapter 2 which intended to set forth the state of the
ethical debate shows that the use of ST in residential care for people with
dementia or intellectual disabilities ID) provokes an array of different views
and responses, with noticeable cultural differences with regard to approaches and
attitudes towards the use of ST. Analyses of all the topics have shown they all dealt,
in one way or another, with three perspectives: that of the institution; the client; and
the care relation. From the institution’s point of view, (functional) safety and
reduction of staff burden appear to be key issues when deciding whether or not to
use ST. However, these interests become morally problematic when they influence
or alter (the) care (relation), e.g. by substituting care, or when they are invasive of
clients’ rights. Besides enthusiasm, many concerns were raised, which center on
recurrent themes that lacked profundity, such as (duty of care versus) autonomy,
dignity, consent, and privacy.
In fact, the majority of discussion articles tend to give a perfunctory summary of the
views rather than an in-depth analysis, often sharing very similar content and
referring to the same few articles that appear to be pivotal in the discussion. In
addition, there was little attention for the client perspective and hardly any mention
of people with ID. The lack of profundity may be related to the fact that much ST
is still very much in development and that experiences with ST (including client
perspectives) and concurrent empirical studies are limited, thereby leading to a
limited understanding and frame of reference as to what good care with ST might
encompass.
In Chapter 3 and Chapter 4 concept mappings were subsequently performed to
further probe into the question of what good (or in this case: ‘ideal’) care with ST
might involve, including two subgroups, dementia care and ID care. Chapter 3
accordingly consulted care practitioners and academics on their views on an ideal
application of ST in residential care for people with dementia. This generated many
views, which were grouped into categories ranging from the need for a right balance
between freedom and security and to be beneficial and tailored to the client to clear
normative guidance.
Further analysis suggested that people who are more involved directly with the care
of residents (i.e., professional carers) are inherently more concerned about the safety
of clients as opposed to autonomy, than those who are involved from a distance
(i.e., the academics). In addition, participants found it difficult to elaborate on ethical
themes they deemed important. The reasons for this minimal elaboration could be
due to the method. Another explanation might be that several ethical concepts to
which the participants referred are very difficult to delineate, especially when it
comes to applying them to the context of a person with dementia.
Chapter 4, which consulted care practitioners and academics on their views on an
ideal application of ST in residential care for people with ID, showed various
similarities with the previous study for people with dementia, including a striking
thematic correspondence between the different categories. But also the prioritization
differences, where the emphasis -in both studies- in the professional carer group was
on safety, and that of the academics group on freedom. As with this study, there was
also minimal elaboration on concepts such as privacy, despite the fact that it is often
raised as a significant concern.
Although both studies produced very similar results, there were also differences.
Perhaps not surprisingly, with regard to people with ID, views were expressed from
a more developmental perspective and with regard to people with dementia, from a
more person-centered perspective. Also there appeared to be a certain fear of ST,
both of the failing of the system as of the staff to be monitored all the time. This
fear was found absent in the study for people with dementia. One possible
explanation for this might be that in The Netherlands the use of ST is more
widespread in the care for people with ID (Willems and Willems, 2007). However,
both studies are united in viewing an ‘ideal’ application of ST in residential care as
an application that strikes a good balance between autonomy and safety, even though
in both cases an inherent conflict is experienced between these values.
An explorative survey was then designed in order to select two care settings for
further in depth exploration of the themes raised in Chapters 2, 3 and 4. The method
that was subsequently used was ethnographic research. Specific attention was paid
to the following:
1) How is the work with ST shaped from the perspective of the nursing and support
staff and how does this relate to envisaged benefits and drawbacks of ST? (Chapter
5)
2) How is ST experienced by clients who are exposed to it? (Chapter 6)
Chapter 5 showed that the researched practices of ST point to a more nuanced view
on the envisaged benefits and feared drawbacks of ST as raised in the literature
review. With regard to the feared drawback of less personal contact, this fear appears
to be premature. It seems that increased electronic monitoring will not automatically
be at the expense of personal monitoring, as the flexibility of the DECT phone can
intensify personal monitoring.
Rather than a devaluation of their skills, nurses and support staff try to strike a
balance between old and new routines of work by incorporating new ST in an
individualized way, thereby not only retaining skills but also learning new ones. This
however could result in a heavier workload, as exemplified by the continuing of night
rounds, even though management of both care homes had reduced the number of
staff present during the night and viewed the rounds as superfluous.
The many instances of false positive alarms were a burden on the staff, with certain
nurses and support workers, however, finding creative solutions to deal with this
problem. Little use was made of those devices, such as the tag or tracking systems,
which might allow more freedom (of movement) and consequently autonomy for
the client, as informants instead often revert back to the old (physical) measures of
freedom restriction, such as locked doors, and not getting broken devices fixed. In
addition, the (less obtrusive) bracelets were forgotten to be taken off when the
original reason for using ST had expired.
Rather than striking a balance between autonomy and safety, the manner or ‘local
logic’ in which nursing and support staff operated appeared to be one where values
such as safety and physical proximity were dominant, as nursing and support staff
were often averse to taking risks (with ST), fearing what might happen if they did.
How risk is perceived by staff is critical for how it is addressed in the facility.
Allowing for a certain degree of risk however, seems necessary in order to reap
certain benefits of ST, including increased autonomy (Zwijsen et al., 2012).
In both settings that were studied, the implementation of ST was not embedded in,
or otherwise preceded by, a carefully formulated conception or vision of care, in
particular a carefully formulated vision of what safety encompasses. This might be a
shortcoming of this study (i.e. that an artefact was found as a result of poor
implementation), but two different Dutch (government issued) reports show that
this is a far more general problem (Dutch Health Inspectorate, 2009; National
Institute for Health and the Environment, 2013). Care facilities for people with
dementia or ID wishing to implement ST, should ideally acknowledge the local logic
of their staff, by exploring an ongoing dialogue how staff members view and
understand the concepts of autonomy and risk. This will help not only in
incorporating surveillance technology into clients care plans, but also in enhancing
staff engagement (cf. Van den Ende, 2011).
The envisaged benefit of (increased) autonomy through ST was further investigated
researching client experiences of ST in Chapter 6. However, these client experiences
appeared to entail a certain ambivalence, with each device bringing its own
connotations and experiences. For example, electronic bracelets enabled clients to
wander around, and even enabled privacy, but also led to clients getting lost and
distressed. There also was resistance by clients to certain ST measures, due to a sense
of stigma, loss of companionship or not wanting to ‘be watched’. What seemed to
underlie the design of ST devices was a presupposition of an ideal user as an
independence seeking agent who knows where to go and make meaning of this,
which can be at odds with the actual user, who might benefit from increased freedom
but also needs tailored support to actually be able enjoy this freedom. Thus rather
than viewing staff intervention as a hindrance to autonomy, a more person centered
approach to ST could support client autonomy.
Although certain clients were also able to exercise their autonomy by showing
resistance to the ST measure, there were several clients in this study who were not
(always) aware that there was a camera or sensor present, or that it was the (or
someone else’s) bracelet which opened (or closed) up doors for them. The less
obtrusive devices are, the less aware clients seemed to be of their presence, which
shows that consulting the client (and subsequent resistance to ST measures by the
client) becomes more difficult as ST increasingly goes unnoticed and/or becomes
less visible. This raises the important question as to whether informed consent,
‘assent’ or (other) inclusionary approaches of supported decision-making provide
sufficient safeguards to invisible or unobtrusive technology.
In summary, a study of the extant literature does not offer a wholly satisfactory
answer as to what morally sound care with ST is, although it did raise many serious
concerns; the concept mappings further investigated that question, which led to
several recommendations including negotiating a good balance between autonomy
and safety, even though an inherent conflict is experienced between these values.
The field study concurrently showed neither envisaged benefits nor feared
drawbacks resemble actual practice. Nurses and support workers use certain ST
intensively and in a creative, individualized way, however with regard to other ST
are ambivalent and reluctant to take risks, valuing safety and proximity over
autonomy. The client experiences of ST show that ST can enable an increase of
autonomy including privacy, but this envisaged increase can also lead to distress or
resistance, and thus has little benefit for the client if it does not correspond with the
clients’ needs and wants.
What answer could then be given at this point as to what (a paradigm of) good care
with ST in residential care for vulnerable people should entail? The first provisional
answer might be that good care with ST revolves around an application that offers
the client a meaningful, beneficial addition to their lives, thereby finding a good
balance between their safety and their autonomy. This might be achieved by
supporting the client in their needs and wants, but also respecting what they do not
want or need. Furthermore, it should be clear to all stakeholders what one expects
from care with ST and how these expectations might be met, thereby taking into
account their perspectives and prevailing values and how these values might conflict.
This might include a different conception of both risk and autonomy which is more
sensitive to the social context in which people live.
This provisional answer has formed the basis of the guideline which was developed
as part of this research and which is described in Chapter 7. The principal aim of
this guideline is to help caregivers dealing with ST, and care facilities wishing to
implement surveillance technology, to get under way in practical terms. However,
the main findings also raise new questions which in the following paragraph will be
further explored.
REFLECTION ON MAIN FINDINGS
As stated above, the main findings raise several new questions. To start with: why is
it so difficult to negotiate a good balance between safety and autonomy with regard
to ST, and is this not a paradoxical message? Moreover, are current standard models
of autonomy and informed consent still feasible given the context of long term care
and the design of ST?
These questions lead us to a reflection on both elements of this balance: safety and
the widespread and dominant culture of risk avoidance and the standard narrow
focus on autonomy and informed consent as a moral safeguard for responsible use
of ST. It will subsequently look at other ethical approaches which might be of better
guidance when answering what morally good care with ST might entail and which
go beyond the traditional dichotomies of safety versus risk and autonomy versus
dependence. Accordingly, this section will focus on three key issues:
(1) Paradoxes in the culture of safety and risk
(2) Deficiency of dominant models of autonomy and informed consent
(3) Beyond dichotomies: towards morally sound care with ST
These key issues should be interpreted within the context of two scholarly trends: 1.
the development and advancement of an ‘ethics of long term care’, which focuses
on the actual, social context in which dependent and disabled or aged people live,
where interdependence, rather than independence takes place (Agich, 2003;
Hertogh, 2010); 2. a growing conceptual and (ethical-) empirical interest in
technology in (chronic) care which draws inspiration from the field of Science and
Technology Studies- a disciplinary field which investigates the interaction between
science, technology and society- which has led to important new insights on the
dynamics of technologies and values within the field of (chronic) care (e.g. Mol et al.,
2010; Pols, 2012).
1. Paradoxes in the culture of safety and risk
Upholding patient or client safety, which is often defined as ‘freedom from
accidental harm’ (Institute of Medicine, 1999), is generally considered by any care
professional as an integral part of their professional care activity and of providing
good care, regardless of the care practice. Underlying this is the moral principle and
central tenet of the Hippocratic Oath to ‘do no harm’, which has been a constant
theme in the development of medical law and ethics (Maclean, 2012). But it is also
manifested by an array of (professionally standardized) safety and quality measures
within each care setting, aimed at both the protection of the patient/client and the
prevention of future harm recurring (Mitchell, 2008). These include care
innovations, which are often aimed at improving the safety and quality of care. At
the same time, incidents, complications or mistakes often occur with novel or
divergent situations where new decisions must be made, such as when using a new
device (Wagner, 2010). In a certain sense this creates a paradox, as introducing
innovations to improve safety also means introducing more risk (Wagner, 2010).
There appears to be a contradictory aspect with regard to the aims of ST application
in residential care. ST is generally conceived, at least from an institutional point of
view, as something which might increase (client) safety, whilst providing more
autonomy- in spite of the fact that there is as of yet little empirical evidence that ST
actually increases safety, as noted in the review in chapter 2. Nevertheless, ST
measures seem to be primarily inspired by considerations of risk minimization, i.e.:
“is there no danger of falling or of other incidents”, even though in order to provide
the envisaged ‘secure autonomy’ for the client this means introducing risk. It explains
why an ‘ideal’ application of ST in residential care was seen as an application that
strikes a good balance between autonomy and safety.
However, this ideal proves to be challenging in practice, as the rationale for the
manner in which ST was used by nurses and support workers in our studies was at
least, in part, based on a certain (sometimes very explicit) fear amongst nurses and
support workers of incidents that might (re)occur. This would result in an aversion
of taking risks and a concomitant unwillingness to use certain devices or rely
completely on others if this in some way might compromise the safety of their
clients. Nursing and support staff seemed to anticipate a ‘catastrophe’ (Beck, 2006).
Beck (2006) states that risk is about ‘the anticipation of catastrophe. Risks exist in a
permanent state of virtuality, and become ‘topical’ only to the extent that they are
anticipated. Risks are not ‘real’, they are ‘becoming real’. (Beck, 2006: p. 332).
The (un)reliability of the devices themselves appears to play an important role here,
and seem to reinforce the feeling among nursing and support staff that a catastrophic
outcome is indeed real(istic) and consequently physical restraints are warranted.
Recently there have been several other Dutch studies to suggest that if (ST) devices
used in nursing home care are too vulnerable, this will not only impede use (De Veer
et al., 2011) but also the belief in restraint use will not diminish (Depla et al., 2010;
Zwijsen et al., 2012) as nurses feel more insecure about the safety of clients when ST
is used than when restraints are used (Zwijsen et al., 2012).
There are exceptions to this reluctance of using certain ST devices to increase
autonomy- as the client experiences in chapter 6 show, where clients were left to
wander around, even though this would only be a relatively small proportion of
clients and occurred predominantly during the day. Several nurses and support
workers would consequently note that the increased space through ST might have
benefit for some of these clients, such as them being ‘less restless’ or being able to
draw by themselves, and try to be accommodating of this new situation. However,
once the client was perceived to be at risk, which would be compounded by those
clients who did get lost and or distressed, staff would revert back to the previous
physical measures of freedom restriction to minimize risk (even though these
measures also involve risks), instead of (continuing) using certain ST devices.
In a qualitative study on perspectives on risk and decision making by professionals
in long term care, Taylor (2006) signaled a similar tension between wanting to avoid
risks and the need to take risks. The study concluded that the rationale for decision
making by care professionals seemed to be more about what was defensible than
what might be right: ‘‘Risk’ was little about probabilities, and more about aspirations,
fears and justifications…Health and safety legislation, and fear of litigation, seemed
to be driving professionals to focus more on non- maleficence [to do no harm] and
thus to avoid some more positive approaches to promoting health and social wellbeing that involved greater inherent risk.’ (Taylor, 2006: p. 1424).
Safety discourse
Policies to regulate risks in care organizations rarely do justice to the complexities of
the professional tasks and the practices themselves, frequently ignoring that prudent
risk taking is often at the essence of decision making by professionals (Hood et al.,
1992; Taylor, 2006). What seems to underlie this prudent decision making is a
broader, dominant culture of safety and risk in modern society (Wigg, 2010).
Historically the notion of risk was recognized as being either something ‘good’ or
‘bad’, which could involve loss or gain, but in (a late) modern society, the meaning
of risk has changed from a neutral term into something that is entirely negative and
dangerous, which needs to be managed and avoided where possible (Lupton, 1999;
Robinson et al., 2007). Modern society has become a risk society in the sense that it
is increasingly occupied with debating, preventing and managing risks as a way to
manage the hazards and insecurities that itself has produced (Beck, 2006).
With regard to long term care, risk is often associated with harm and the perceived
vulnerability of clients to harm (Manthorpe, 2003). This might not be unsurprising
as long term care is essentially characterized by a very vulnerable population who
require permanent, comprehensive care services. Consequently discussions of long
term care tend to emphasize (physical) safety and protection (Kane and Kane, 2001).
What is more, these concrete and more measurable interests to health and safety particularly as they inhere to vulnerable people- often seem to ‘trump’ all other
issues- including "abstract" values such as autonomy and dignity (Eltis, 2005).
This is illustrated by the fact that embracing an ideal such as autonomy shifts
according to the locus of responsibility- thereby remaining an ideal, which is
consequently difficult to delineate in the context of long term care (as was noted in
our studies). Consequently, quality of life domains including meaningful activity,
relationships, spiritual well-being and autonomy, are minimized in current quality
assessment of long term care and given credence only after health and safety
outcomes are considered (Kane, 2005). For instance, in The Netherlands current
quality assessment in long term elderly care (named 'Quality Framework Responsible
Care’) shows a particularly strong emphasis on (client) safety, whereby indicators are
primarily used to form judgment on safe, effective and responsible care (The
Organization for Economic Co-operation and Development [OECD], 2013).
With regard to care policies and care planning there will always remain tensions
between what is prescribed and what is discretionary (Taylor, 2006). However, as
most long term care settings in the Netherlands have no clear care vision on how to
achieve good care with ST (Dutch Health Inspectorate, 2009), what exactly is
‘prescribed’ with regard to ST remains unclear to care professionals. The institutional
ideology of using ST seems to be a mixed message of minimizing risks and taking
risks (i.e. ‘secure autonomy’). This results in a continuous ‘balancing’ act between
protecting those who wander, while respecting their autonomy (Robinson et al.,
2007) - with the balance consistently tilting towards safety. What is more, in
prioritizing safety over autonomy there is the concomitant concern of primary
caregivers for ensuring harm does not come to a client for which they might be
deemed culpable and will be penalized.
Although The Netherlands does not have a strong litigious tradition in healthcare,
as compared to for instance to the US, Dutch society as a whole has become
increasingly punitive, which is both reflected in the growing call for more repressive
measures to solve acute societal problems (Torenvlied and Akkerman, 2005), as also
in safety policies and regulation (Schuilenburg and Van Swaaningen, 2013) pointing
to a ‘culture of fear’ which needs to be channeled and rationalized in terms of
manageable risks (Schuilenburg and Van Swaaningen, 2013). As a result, incidents
that occur in healthcare, including long term care, will often get extensive media
coverage and consequently lead to calls for stricter regulation and enforcement.
Therefore, enforcement entities such as the Dutch Health Care Inspectorate, have
taken an increasingly prominent and firmer role with regard (to checking up on)
incidents in long term care, for example by taking a stricter view on what actually
constitutes a calamity (e.g. falls with serious injuries are now considered a calamity;
as is aggression of the client) (Kamerstukken, 33149). Although their firmer stance
is aimed at getting care settings to learn from incidents, it (perhaps unwillingly) also
reinforces a punitive culture of safety.
The structure of responsibility and accountability nursing and support staff working
in residential care have towards the family, could also reinforce less tolerance of risk
by both parties, as residential care includes a large group of clients who have moved
away from their homes in the community because of their families’ fear that the
clients’ safety cannot be assured there anymore (Landau, 2010). Although family
caregivers of people with dementia report stronger support for the use of tracking
devices than professional caregivers (Robinson et al., 2007; Landau et al., 2010), this
support is primarily inspired by their own ‘peace of mind’ and for the safety of the
person in their care (Landau et al., 2009). This can create more ambivalence, as family
members of the client might perceive certain ST devices as safety increasing, as
opposed to staff who are reluctant to use certain ST because they are deemed risky-
which also depends on which device is used. Although this thesis does not elaborate
on the data on family members of clients in our studies (an inherent limitation of
this research), other studies seem to suggest that safety discourse does play an
important role in decisions on ST among care professionals and families of
individuals with dementia or intellectual disabilities (cf. Robinson et al., 2007; Landau
et al., 2009; Wigg, 2010).
As modern society is becoming ‘increasingly preoccupied with the future (and also
with safety)’ (Giddens, 1998: p. 27), risks are presented as a given which are
calculable, in attempt to produce certainty and control the future (Giddens, 1994;
Lupton, 1999, Beck, 2006). This also pertains to long term care, which is
characterized by a highly vulnerable, so called ‘at risk’ population who are more
susceptible to (self) harm. This leads to a dominant discourse of safety in long term
care, favoring measurable outcomes of patient safety and health over abstract values
of autonomy, and is maintained by a lack of any clearly formulated (care) visions on
safety in long term care, a fear for persecution and negative publicity, and potential
pressures from families of clients to provide more safety.
Practice of risk
Given the fact that the need to protecting clients’ safety at all costs appears not only
to be an institutional need, but one that is borne out of external (societal) pressures
on all levels (as described above), the reluctance to take risks and keep the client
from harm’s way by nursing and support staff in our studies is an understandable
reaction when using ST. What then needs to be changed so that increasing autonomy
with ST can be considered as an attainable value instead of as something which is
considered at the least ambivalent and at the worst potentially ‘catastrophic’?
By challenging standard conceptions of risk and safety, values can come to the
surface that had been so deeply rooted as to have been invisible and which might
have proved an impediment to any change. For example, in opposition to the ‘total
institutionalization’ of people with ID in the 1970s, the term ‘dignity of risk’ was
coined by Robert Perske, to challenge professionals going too far in their effort to
‘protect, comfort, keep safe, take care and watch… such overprotection endangers
the retarded person's human dignity and tends to keep him from experiencing the
normal taking of risks in life which is necessary for normal human growth and
development.’ (Perske, 1972: p. 1). Reflecting on the potential benefit of
experiencing day-to-day risk, Perske pointed to the need of people with ID to be
able to take chances, which requires adopting new skills: “Knowing which chances
are prudent and which are not—this is a new skill that needs to be acquired…Now
we must work equally hard to help find the proper amount of risk these people have
the right to take. We have learned that there can be healthy development in risktaking and there can be crippling indignity in safety!” (Perske, 1981: p. 52).
Parsons (2008) points to the fact that dignity of risk acknowledges the fact that
accompanying every endeavor is the element of risk and that every opportunity for
growth carries with it the potential for failure: ‘When people… are denied the dignity
of risk, they are being denied the opportunity to learn and recover.’ (Parsons, 2008:
p. 28). Respecting the dignity of risk does not preclude staff intervention to preserve
autonomy, rather, it emphasizes a person’s potential to learn and the possibility to
make wrong decisions, which not only involves the client, but also those that care
for him or her.
Of course, in certain cases, particularly clients with severe (degenerative) cognitive
disabilities, including people with dementia, any capacity to ‘learn’ from wrong
decisions might no longer be possible. Curtailing the freedom of movement of this
particular vulnerable group of clients in order to protect them, might then seem an
understandable measure. However this would preclude clients from still being able
to enjoy certain aesthetic pleasures. What is more, restrictive environmental
conditions and stimuli deprivation could worsen functioning and induce stress
amongst clients (Gonzalez and Kirkevold, 2013).
Gonzalez and Kirkevold (2013) recently published a review on the benefits of
sensory gardens in dementia care, also known as ‘restorative’ or ‘wandering gardens’.
These gardens are often well arranged and shielded, designed in such a way to safely
support individuals being outdoors, allowing individuals to (either actively or
passively) experience plants, nature and fresh air (Gonzalez and Kirkevold, 2013).
Their findings revealed that an outdoor sensory environment is associated with
positive effects and may improve well-being and affect, and reduce the occurrence
of disruptive behavior (Gonzalez and Kirkevold, 2013). These type of environments
might prove a more meaningful -and indeed safer- alternative for certain clients who
do not have the capacity to learn, compared to the current ST supported wandering
opportunities as provided by long term care settings, though they are not without
their own problems, including being sensitive to weather conditions (Gonzalez and
Kirkevold, 2013).
Yet as much as it might make sense for institutions to both ‘secure and enable’, a
complete securing and total avoidance of risk (with or without the use of care
technologies) is impossible. For instance, in their ethnographic study on providing
safety in a home telecare service, Lopez et al. (2010) state that: ‘safety not only
depends on securing practices, it also depends on caring practices […] that strive to
attend to what should not have been possible. The management of care consists of
allowing the indeterminacy of events to affect the service in a productive way. This
implies being receptive to events before trying to fit them into a closed pattern, such
as a protocol. So, while security is a practice of protection, care is a practice of risk.’
(Lopez et al., 2010: p. 80)
Both the dominant emphasis on safety and the stress on service and bureaucratic
efficiency in long term care can however replace ‘any vestige of social or ethical
significance for basic acts of care’ (Agich, 2003: p. 163). In a similar vein Kalis et al.
(2005) have pointed to the possibility that professional caregivers in nursing homes
do not always realize the problematic character of conflicting value combinations as
they have a job to do, which consequently might not always allow room for critical
reflection on one’s practice (Kalis et al., 2005). Correspondingly, our studies imply
that personal evaluations and decisions on the use of ST are not based upon clear
cut normative foundations but seem to emerge contextually. This local ‘context of
use’ might be seen more broadly as one which participates with, and contributes to,
larger institutional and societal processes (Nicolini, 2006).
As both chapter five and seven stated, encouraging, supporting and embedding
normative learning processes of care professionals institutionally is important when
organizing good care (with ST) (cf. Van den Ende, 2011). Instead of being left alone
in learning to know their experiences with ST and determining decisions upon them,
both staff and clients should be supported in this process of becoming aware of their
decisions and searching for what matters. Whatever the environment, wandering or
other ‘risky behavior’ should ideally not be viewed as an expression of a disease that
needs to be treated or secured and controlled, but as a form of communication,
which, despite our limited understanding of the phenomenon, is interpreted and
responded to in terms of what is driving the behavior (O’Neill, 2013).
By fundamentally (re)drawing on a care vision of safety, whereby care with ST is
considered as a ‘practice of risk’ instead of a ‘practice of protection’ (cf. Lopez et al.,
2010), allowing for, responding to and learning from indeterminacy, including
‘indeterminate’ or ‘risky’ behavior, this might provide a starting point in offsetting
and opening up the prevailing discourse of safety.
2. Deficiency of the dominant model of autonomy and informed consent
To seriously consider how somebody experiences life, what limitations he or she
encounters and, based on this, to think about what it means to care well for people
with dementia and ID, implies approaching ST from a more person-centered
perspective. This can be challenging because we still know very little about people
with dementia and ID, who they are or who they were, and how they experience ST
in particular: much ‘decision-making’ on the client’s behalf with regard to ST seems
to be ambivalent. As Chapter 6 shows, this ambivalence has several causes, which is
in part due to the rich variety in ST devices which involves different (sometimes
unforeseen) outcomes, but also due to the fact that clients often have a diminished
capacity to make decisions and or execute on these decisions.
The design of ST devices such as electronic bracelets thus seem to presuppose an
ideal user, namely an able-minded, autonomous agent who seeks independence and
appropriates ST as such. Though ST might increase the autonomy of the client as it
opens up new space for clients, this does not imply that all clients actually value or
cope with this new space. As has been observed by Lopez et al. (2013): ‘the fact that
technology might be designed to enhance the autonomy of their users does not
necessarily mean that this technology is going to be appropriated by users seeking
for autonomy or that this technology is going to actually increase their autonomy.’
(Lopez et al., 2013: p. 9).
To be able-bodied and able-minded, is often the ideal on which meanings of a good
life are constructed (Ho, 2008; Hertogh, 2010), which underlie not only ‘the social
and professional structures within which discussions and decisions regarding various
impairments are held’ (Ho, 2008: p. 198) but also the design and use of technologies
such as ST that co-shape these structures.
This, however, raises an important epistemological question: how can people with
dementia and ID actually be better supported and involved in decisions on ST, if
this process is ambivalent and underpinned by a deficient yet pervasive, ‘ableist’ view
of autonomy? In order to answer this question, we first need to briefly look at
existing conceptualizations of autonomy and informed consent.
The bioethical ideal of autonomy
With the advent of new biomedical technologies, medical practice and research
changed dramatically after the Second World War. Concurrently, civil rights
movements and second wave feminism contributed to an eroding deference to many
forms of authority, including organized medicine. It was in this context that
bioethics emerged as a new discipline (McDougal and Langley, 2012). Central in this
conceptualization of ethics is the principle of respect for autonomy, accompanied
by informed consent, which is regarded to be the means toward autonomy (Dupuis
and De Beaufort, 1988). The etymology of the word “autonomy” refers to the
Kantian conception of humans as autonomous if they have the ability to decide
themselves (autos) the laws (nomos) to which they comply, and if they have the
possibility of applying those laws (Reach, 2014).
Accordingly, the bioethical principle of autonomy aimed to guarantee patients a
voice which would protect against any patronizing and unwanted paternalism
(Hertogh, 2010), as the primary idea behind this type of autonomy is that patients
are provided the space to determine the course of treatment based on their own
perspectives without coercion, even if their decisions are expected to be ‘wrong’ or
harmful decisions from a medical perspective.
Thanks to this commitment, bioethics has unequivocally made an important
contribution to the strengthening of the position of the patient. In fact, bioethics
has been so successful that its central principles have been established in health
legislation- present day healthcare is inconceivable without decisional autonomy and
the doctrine of informed consent (Hertogh, 2012). For instance, the Medical
Treatment Contract Act (WGBO) which came into force in 1995 in the Netherlands,
regulates and codifies the informed consent doctrine and serves as comprehensive
law for other health care related regulation, including the use of patient data for
clinical research.
But bioethics’ strong focus on autonomy has also been met with strong criticism,
which is aimed at the underlying concept of man and society stemming from liberal
political theory. This conceptualization projects people as individuals who are
independent and self-sufficient, stipulating the ideal relationship in more or less
contractual terms, where people act as equal citizens within a public realm (Tronto,
1993; Agich, 2003; Nussbaum, 2006; Hertogh, 2010). It is questionable whether
vulnerable people with diminished decision-making abilities, if indeed all of us, meet
this idealized assumption of being totally independent and self-sufficient, or whether
this is not simply ‘a mere fiction’ (Kittay, 2011: p. 51).
The second point of criticism is that it focuses solely on autonomy as a form of
negative freedom, i.e. the absence of (extraneous) interference or coercion. It
contrasts as such with the (ethical) motives of care professionals to involve or engage
themselves with others and has little room for the value of concrete practices and
particular relationships (Hertogh, 2010), let alone it being sensitive to ‘the complex
conditions that actually support the unique identity of those individuals needing
long-term care’ (Agich, 2003: p. 134).
Consequently this negative conception of autonomy is hardly useful in formulating
an ethics for long term care and reflects the ‘idealized paradigm of choice or decision
making dominating ethical analysis’ (Agich, 2003: p. 165). According to Agich, this
does not mean replacing autonomy as a guiding value for long term care altogether.
Rather, he proposes enriching the concept of autonomy by focusing on the ability
of an individual to initiate actions that are consistent with her sense of self, which
includes interaction with others and giving and receiving affection (Agich, 2003).
The treatment of actual autonomy stresses the developmental and social nature of
human persons and the priority of identification over autonomous choice: ‘to be
autonomous is to be a particular agent individualizing oneself in particular
circumstances through effortful striving in the shared social world’ (Agich, 2003: p.
97-98).
Agich’s proposal for an alternative, positive conception of autonomy is in line with
other alternative, relational (and political) approaches to autonomy and ethics, which
conceive of (an ethic of) care as fundamentally relational, context-bound and
situation-specific (Klaver et al., 2013), and place autonomy within this specific
context of interdependency, which is aimed at pursuing the good life (Tronto 1993;
Verkerk, 2001; Hertogh, 2010).
Informed consent
The bioethical conceptualization of autonomy as rational choice and independence
is still the predominant approach of dealing with normative issues in care, which
consequently has several important implications for long term care. Firstly, it creates
a backlash against dependence of any sort, with those in need of long term care
susceptible to the pejorative meanings associated with dependence or ageing (Agich,
2003; Hertogh, 2010). Secondly, autonomy as independence leads to a discourse
whereby ‘the language of rights eclipses other ethical language’ as long term care is
primarily thought of in terms of problems that can be regulated and dealt with
through establishing rights (Agich, 2003).
Consistent with this discourse is the legalistic, procedural application of informed
consent, which is ‘evoked as the golden rule to ensure that autonomy is respected’
(Lopez et al., 2013: p. 2). Informed consent traditionally involves the following
conditions: it should be based on disclosure; be voluntarily given, and the patient
ought to have sufficient capacity (Beauchamp & Childress, 1994). Ethcells et al.
(1996a) describe “disclosure” as relevant information provided by the clinician in
such a way as to be comprehended by the patient. “Capacity” describes the patient’s
ability to understand the disclosed information and to appreciate the consequences
of a particular decision or lack of decision (Ethcells et al., 1996b).
As with autonomy, this issue of capacity can be viewed as problematic, even more
so when it concerns people with decision-making disabilities, such as people with
dementia or ID, as it has led to situations where those who are categorically viewed
as having ‘no capacity’, were no longer afforded a role to be involved in decisions
regarding their own care (Peisah et al., 2013). Fortunately, the situation is now
changing towards more inclusionary approaches whereby, instead of judging
whether people have capacity, people with decision-making disabilities are assessed
by what kind of support they need in order to be involved in decision-making (Peisah
et al., 2013). For instance, the UN Convention on the Rights of Persons with
Disabilities establishes supported decision-making as the preferred alternative, and
precursor, to proxy decision-making (Carter, 2009).
However, there is no consensus yet about how these models of supported decisionmaking might be utilized by people with decision-making disabilities and their
caregivers (Peisah et al., 2013). What is more, current Dutch legislation, such as the
Medical Treatment Contract Act, does not state how the proxy or the caregiver
should involve or support people in decision making disabilities, even though both
proxy and care giver are presumed to maintain the roles of good representatives and
responsible caregivers, with regard to providing informed consent. Nevertheless, as
was stated in the general introduction, the forthcoming law on the use of restraints
‘Care and Coercion’ (‘Zorg en dwang’) places informed consent central in its
definition and designation of (monitoring forms of) technology such as ST: if the
client or proxy is informed of the ST measure and does not consent to, or the client
resists its application, ST can consequently be viewed as involuntary care.
Conversely, if the client does consent, assent or does not resist the ST measure, the
measure as such might be regarded as voluntary care.
There is a danger that when ST is solely approached from this legislative point of
view, the complex, intricate normative issues which surround care with ST will be
reduced to a single procedure: as long as (proxy) consent has been obtained and no
resistance takes place, ‘autonomy’ has been respected and good care with ST has
been achieved. The concept of resistance (by the client) here is then simply an
extrapolation of the informed consent doctrine, modelled to suit the situation of
incapacity. As with the bioethical concept of autonomy, such an informed consent
procedure involves an idealized narrow assumption of an insular and independent
rational decision maker who knows what is best and is able to grasp and foresee the
consequences of a potential ST measure, instead of a vulnerable person with
decision-making disabilities who is part of an asymmetric, interdependent context
of care.
As was illustrated in chapter 6, there were certain clients in our study who were
capable of explicitly saying ‘yes’ or ‘no’ to (new) ST measures, or show their
resistance to its consequences. However these were clients who were at that point
aware of the ST device, or of its consequences and were able to communicate (this)
in some sort of way, which was partly related to their (cognitive or verbal) abilities
and in part to how caregivers responded to this. At the same time, there were several
clients who were not always aware that they were wearing an electronic bracelet, or
that it was the bracelet which opened up doors for them, or that they were being
‘listened in to’ by audio surveillance.
Although clients do not need to be aware of ST in order for it to work or benefit
from it, it does pose problems with regard to being able to be involved in the
decision making process regarding ST, either through consent, assent or resistance.
Although a shared or supported decision making model aimed at maximizing
understanding and enabling participation in decision making seems to be motivated
by a more positive, relational conception of autonomy (cf. Peisah et al., 2013), any
consent model will have it limits. How successful the decision making process is will
always be dependent on the decision making abilities of the client, the creative skills
of the caregiver, the quality of communication and of the relation between both the
client, proxy and caregiver. But also on the power dynamic between these parties,
where there is always a risk of clients’ acquiescence to imposed care measures, as
different parties might have different or contrasting interests (Heal and Sigelman,
1995; Finlay and Lyons, 2002).
Maximizing understanding (of ST) is even further problematized by the fact that
several ST applications are barely visible, as they are designed to be unobtrusive (for
example the GPS tags sewn into the coats of clients and the motion sensors and
audio surveillance which were embedded in the walls, as described in our studies).
This ultimately means that the less obtrusive and less visible devices are, the less
aware clients will be of their presence. Consequently, an ST measure which can
hardly be observed makes it even more difficult for the client to grasp or understand
it, let alone being able to foresee or resist (the consequences of) such a measure. This
is particularly relevant for the concept of resistance, because it is through being able
to resist that a client with decision making disabilities -who in any other way might
not be capable- can still contribute to the decision making process on ST. Essentially
the informed consent procedure surrounding the ST measure thus gets an evaluative
character, because resistance can only take place once the measure is in place. But it
is the inherent invisibility of many ST devices which make it difficult, if not
impossible for the client to resist such measures. As the use of unobtrusive ST
applications - often integrated within a complex, barely visible ST system- increases
in residential care, it is difficult to see how informed consent (or any inclusionary
approach) can then properly involve the client.
To sum up, the dominant ethics assumes that the moral safeguards for good care are
sufficiently satisfied by involving people with dementia and ID in decisions and aims
to persist with the informed consent model far beyond the situation of capacity
through, among other things, the construction of proxy consent and resistance of
the client. But once this model reveals itself as untenable in the situation of invisible
technology, how can good care with ST subsequently be guaranteed by caregivers
and proxies? We therefore need to look beyond the prevailing and too narrow
models of autonomy and informed consent and towards different ethical
approaches, in order to provide good care with ST.
3. Beyond dichotomies: towards morally sound care with ST
Ethics is often conceived as the study of considering what ought to be, rather than
what is. An important and much heard criticism of combining or integrating ethics
with empirical investigation is that it would not be able to avoid the fundamental
problem of the is- ought gap, as famously introduced by the philosopher David
Hume, i.e. that ethical norms cannot be derived from facts or descriptions of reality,
as they can never prescribe what people ought to do. Consequently, when focusing
on what morally good care with ST ought to be, we should therefore only concern
ourselves with what morally ought to be the case rather than researching what is the
case.
However, as was stated in the introduction, this thesis did not depart from a specific
norm or notion of (what ought to be) good care because it does not conceive of
good care as something static or a-historical (cf. Pols, 2010; Hertogh, 2010), as the
ethical content of practices might itself be comprehended as ‘a way to be normative’
(Pols and Willems, 2010: p.163). In fact, even (the supposedly neutral practice of)
ethics and moral reasoning as such might not be conceived of as value free, but
instead as context sensitive, serving multiple interests (Walker, 2007; Leget, 2013a).
Thus the point of departure of this thesis was an exploration or ‘open search’ for
what good care is (with ST), by looking at the variety of goods that people involved
in health care practices find important, consequently (re)thinking and reflecting
conceptually on the empirical fndings. As Coeckelberg (2009) has pointed out,
bioethical principles ‘provide only limited guidance when it comes to giving a
positive definition of good care’ (Coeckelberg, 2010: p. 183-184), as a better
contextual understanding of the practice of care can contribute more to clarifying
ethical questions than simply using ethical principles (Dierckx de Casterlé et al.,
2011). This however does not automatically mean that with regard to ST ethical
principles or norms are obsolete, but rather that a different approach to shaping
norms for ST is advisable for ethics to actually remain ‘action guiding’ (De Vries and
Gordijn, 2010) for practice- whereby any ethic or normative framework as such is
better attuned to the practices that they are meant for.
When aiming for morally sound care with ST in residential care we accordingly need
to continue to evaluate practices of ST, which also goes beyond the traditional
dichotomies such as ‘safety versus risk’ and ‘dependence versus autonomy’.
Redefining care with ST as a ‘practice of risk’ (cf. Lopez et al., 2010) might be helpful
as a first step in countering the dominant culture of safety with its emphasis on doing
no harm. Also, by using a positive relational conception of autonomy (cf. Agich,
2003) we might begin to disambiguate this difficult concept and make it more
feasible for ST in long term care. Nevertheless, the deficient procedure of informed
consent in relation to the unobtrusive, barely visible design of ST does implore for
additional, more comprehensive ways of assessing how morally good care with ST
in long term care practices might be achieved. Therefore two different theoretical
approaches will now be briefly explored that might be of further theoretical and
practical guidance with regard to the sound ethical evaluation of ST in long term
care, namely the capability approach as advanced by Martha Nussbaum and the
technology philosophy of Peter-Paul Verbeek.
Dignity and the capabilities theory
One way of developing more comprehensive and indeed practical criteria for good
care with ST, is by appealing to the capability approach as advanced by Martha
Nussbaum, which focuses on what people ‘can actually do and be’ (Nussbaum 2000:
p. 5), as opposed to ‘appealing to individual autonomy or vague conceptions of
individual rights’ (Pearson, 2006: p. 23). The capability approach accordingly tries to
evaluate wellbeing in terms of peoples capabilities instead of the resources they are
allocated (Nussbaum and Sen 1993; Nussbaum 2000). The starting point for
Nussbaum’s capability approach is the principle of human dignity. Dissatisfied with
the original Kantian conception of ‘menschwürdigkeit’ which makes reason
(including a capacity for moral judgment) the basis for our personhood and
consequently, our inherent dignity, Nussbaum instead perceives our dignity as the
dignity of a human being who is characterized throughout life by ‘rich human need’,
which prominently includes needs of other people.
Nussbaum thus rejects the Kantian view of the person ‘grounded in an idealized
rationality’ (Nussbaum, 2006: p. 216), which suggests that ‘the core of our
personality is self-sufficient rather than needy, and purely active rather than passive’
(Nussbaum, 2006: p. 132). As Nussbaum points out, ‘we learn to ignore the fact that
disease, old age, and accident can impede the moral and rational functions…’
(Nussbaum, 2006: p. 132). What is more, it makes us think of the core of ourselves
as atemporal, since ‘moral agency (in the Kantian view) looks like something that
does not grow, mature and decline, but is rather like something that is utterly
removed, in its dignity, from these natural events.’ (Nussbaum, 2006: p. 132).
Thinking in this way might make us forget that a full human life cycle brings with it
periods of extreme dependency, in which our functioning is very similar to that
experienced by people with (cognitive or intellectual) disabilities throughout their
lives (Nussbaum, 2006).
The concept of a capability as Nussbaum proposes it, refers to two interrelated
components. First, it refers to capacities or powers of people as human beings.
Second, it refers to the opportunities that people have to nurture and exercise their
capabilities (Alexander, 2005). This might involve rational or moral deliberation, but
needn’t always. Human dignity according to Nussbaum may be found in relations of
dependency, and or respect for equality. But a life with dignity for Nussbaum is
foremost about meeting the ‘appropriate threshold level’ of the basic human
capabilities (Nussbaum, 2006: p. 180).
Although human dignity is a notoriously vague concept, which in ethical discussions
is often used as a ‘language tool that is always used with a certain agenda’ (Leget,
2013b), the capabilities list might counter this problem as it is not derived from the
ideas of dignity and respect, but should rather be viewed as ‘fleshing out these ideas’
(Nussbaum, 2006: p. 174). Accordingly, Nussbaum lists the following capabilities:
Life. Bodily Health. Bodily Integrity. Senses, Imagination, Thought. Emotions.
Practical Reason. Affiliation. Other species. Play. Control over one’s environment:
Political and Material. (Nussbaum, 2006: p. 76-78).
According to Coeckelbergh (2010), Nussbaum’s list of capabilities could be used as
a list of positive criteria to allow us to evaluate health care and consequently the use
of ambient intelligent technology in health care, whereby ‘the principle of human
dignity requires that the listed human capabilities be restored, maintained, and
perhaps enhanced’ (Coeckelberg, 2010: p. 185). With regard to ST in residential care
the capability approach might then be a useful addition to the current normative
paradigm with regard to ST, because it aims to be inclusive, comprehensive and
context sensitive, with more attention for inherently vulnerable people, instead of
‘fetishizing freedom as an all-purpose good’ (Nussbaum, 2006: p. 216). For instance,
affiliation is particularly important for Nussbaum, as this will include people with
(severe) cognitive or intellectual disabilities who still have a capacity for affiliation,
though they might show this in different ways. Thus it also requires a completely
different and complex conception and understanding of reciprocity: one that is not
based on a Kantian view of personhood, but rather on being able to actualize one’s
capabilities to a certain level.
However Coeckelberg is quick to point out that the principles for good care that can
be derived from Nussbaum, as with any ethical or moral principles, ‘do not
necessarily settle difficult cases or solve hard problems in health care practice…this
implies that each criterion cannot settle but rather inform and guide moral
deliberation and evaluation in particular cases and with particular practices.’
(Coeckelbergh, 2010: p. 186).
Using the capability list accordingly not as a definitive list but rather as a positive
account of what the good life with ST might entail would allow for a more critical
accompaniment of care with ST. It would however need to be sufficiently specified
to be made feasible for the evaluation of ST in long term care practice, given the fact
that the items on the list are somewhat general and abstract. As the list is ‘openended and subject to ongoing revision and rethinking’ (Nussbaum, 2006: p. 296) this
would seem to allow room not only for reinterpretation, but also for
supplementation.
Recently, Pirhonen (2014) combined Nussbaum’s list with ethnographic data
gathered from a Finnish sheltered home for older people, in order to provide several
ideas as to how the capabilities might be understood as providing opportunities for
the good life in the context of long term care. Although the examples that Pirhonen
gives are sometimes somewhat evident, his approach is very insightful and could
provide a stepping stone for applying the capability list specifically to the evaluation
of ST, whereby we for example might ask ourselves whether the use of ST means
that it leads to opportunities for clients to play and recreate such as being able to
draw on your own or do a puzzle with your neighbors; how ST might or might not
contribute to stimulating the senses and the imagination which might include
aesthetic joys and whether ST brings sufficient opportunities to be closer to nature
including availability of and access to plants and gardens, to name but a few of the
items of the capabilities list (cf. Nussbaum, 2006; Pirhonen, 2014). Ultimately the
capability approach challenges us to further develop it, as the universality of
Nussbaum’s capabilities is ‘essentially based on locality, because every capability
must invariably be applied locally’ (Pirhonen, 2014). Thus both more thorough
conceptual and empirical analysis of (local) practices of ST would be needed, in order
to make the capability list viable as a heuristic normative tool for ST.
Technological mediation and ethical design
According to Peter-Paul Verbeek human actions are always mediated and
technology is one of the sources of this mediation (Verbeek, 2011). What underlies
this notion is the view that technology should be analyzed not only in terms of the
social processes in which it is constructed, but also in terms of the role it plays in
social processes itself. (Verbeek, 2010; Verbeek, 2011). Accordingly, when using a
normative framework such as the capabilities list to evaluate technology, one should
be aware that the ethical concepts that are used are not independent from the
technologies that are being evaluated (Verbeek, 2011; Coeckelberg, 2011). The
objective of ethics is, then, not to protect humans from unilateral control by
technology, but to reflect on how technologies mediate life. By relating to the
influence of technology, one can then actually help shape the impact of technology
on daily life (Verbeek, 2009; Verbeek; 2011).
This idea of self-practice or self-constitution with regard to technical mediation, in
which the (moral) self is constituted by relating to the powers and forces that try to
shape it, has been advanced by Verbeek (2011) and Dorrestijn (2012) and is based
on the work of Michel Foucault on subjectivication. From this perspective technical
mediation is not seen as something that opposes or threatens man ‘but as the very
material of ethical activity and reflection’ (Dorrestijn, 2012: p. 159). As Dorrestijn
states: ‘The ethical principle is not the universal moral law of reason that requires
absolute freedom of the subject, but a will to give style to the way one is transformed
through engagement with new technologies (mode of subjection). The practical
efforts and skills needed to accommodate and integrate technologies into our modes
of existence become a pivotal aspect of ethics as an alternative to mere resistance
against intruding powers’. (Dorrestijn, 2012: p. 160). In other words: if people want
to be able to take responsibility for the role technologies play in their lives, they must
first of all relate explicitly to the way in which these technologies partly shape their
intentions and behavior (Verbeek, 2009).
With regard to ambient intelligent technologies, one might distinguish between
technologies that are coercive, forbidding certain actions; persuasive technologies,
which for instance give feedback on one’s own behavior, persuading the user to
adapt their behavior and seductive technologies, which do not so much coerce or
persuade but simply make some actions more attractive than others (Verbeek, 2009;
Dorrestijn, 2012). By making explicit how certain technologies (sometimes
implicitly) shape our lives, the appropriate distance might be created in order to
relate to these forces, as it ‘generates the space to experiment with the use of
technology, keeping a sharp eye on the quality of the practices resulting from them,
and based on the realization that every practice in which a technology is used shapes
our own subjectivity as well’ (Verbeek, 2009: p. 239).
Although it might be difficult to see how self-practice with regard to ST would work
in the case of a vulnerable client who might not be sufficiently capable of such
subjective realization- indeed more so in the case of technologies that are barely
visible, this approach to assessing technology might be viewed more broadly as an
evaluative approach practiced by all of us, thereby forcing us to ‘reflect on the ideals
and goals that lie hidden in our dealings with technology and how desirable this is’
(Verbeek, 2009: p. 240). This broader approach is important, because otherwise the
idea of self-practice might be susceptible to a similar critique of ableism to which
the bioethical concept of autonomy falls prey.
According to Verbeek ethics and technology policy should focus far more on the
demand for public visions on the good life and the role technology plays in it than
is currently the case, but there are also implications for the responsibility of
designers: ‘by the way in which they design persuasive technology and ambient
intelligence, designers inevitably contribute to the influence these technologies exert
on people’s daily lives, be it explicitly or not’ (Verbeek, 2009: p. 240). And, as was
seen in our studies, unforeseen and unintended effects can arise too. In order to be
able to anticipate implicit normative effects of technologies such as ST, a design
should never be seen as being only instrumental, but instead as being mediatory,
which ‘charges designers with the responsibility to anticipate these mediating roles.’
(Verbeek, 2011: p. 118).
For instance ST devices such electronic bracelets are devices allowing clients more
freedom of movement to wander safely, whilst at the same time allowing caregivers
to monitor these clients from a distance. Viewed purely instrumentally would hide
the fact that not only does this device fulfills its function, but also ‘imposes an
implicit normative framework and organizes its environment in a specific way’
(Verbeek, 2009: p. 240). Staff support is for example discouraged, as the ideal is
being able to walk on your own. As seen in our studies, this ideal is not always
desirable, as certain clients ended up getting lost or distressed.
Technology such as ST inevitably contains built-in norms, but in order to become
responsible these norms must be made explicit, which is only possible if designers
approach the technology explicitly as ‘a mediating object around which new practices
and new interpretations will arise’ (Verbeek, 2009: p. 241). This does not mean that
designers should get all the responsibility, as well-intended ‘moralizing’ effects of
technology can constitute ‘an undesirable implicit meddling in people’s answers to
the question of the ‘good life’’ (Verbeek, 2009: p. 240). Rather there should be
participatory procedures for all stakeholders to co-shape how ST is designed, which
includes an ‘ability to understand the mediating roles of the technologies around
them, and to develop an explicit relation to them’ (Verbeek, 2009: p. 241).
Proposals to ‘moralize technology’ (Verbeek, 2011) by aiming for a more ‘socially
engaged design’ (Dorrestijn, 2012) such as ‘moral inscription’ (Jelsma, 1999) or ‘value
sensitive design’ (Friedman et al., 2006). But also other approaches such as ‘universal
design’ (Parette and Scherer, 2004; Perry et al., 2008) or ‘ethically aware design’ (Casas
et al., 2006) could prove to be very valuable, as the role of ethics changes into a more
accompanying role in the development, use, and implementation of ST, providing
designers, users, and policy makers with more adequate vocabularies to perceive and
assess the impacts of these technologies. However this would have to be preceded
by identifying who the relevant stakeholders are, in order to be able to analyze both
the (implicit or explicit) values and the mediations involved in the design of ST.
Ideally this would include a wide range of professionals and other relevant people:
e.g. elderly care physicians, ID physicians, psychologists, nursing professionals, and
support workers, planners of quality and social policy, family members, and of
course, the clients themselves.
Finally
The above – tentative - exploration of two different ethical approaches, i.e.
Nussbaum’s capability approach, which might be conceived of as a threshold for
evaluating the good life and Verbeek’s conception of technological mediation and
ethical design which can make explicit how certain technologies (implicitly) shape
our lives, both imply a more evaluative accompanying approach when it comes to
defining norms for good care with ST. Based on how the good life with ST might
be achieved, rather than on a negative account of autonomy, these approaches might
ultimately provide both more practical and morally apt criteria upon which to assess
good care with ST, although further research is warranted.
METHODOLOGICAL CONSIDERATIONS
This study comprised a mix of strategies of data collection and analysis in a specific
sequence: it started with a literature review (Chapter 2), followed by two concept
mappings (Chapter 3 and 4). Next an explorative survey was designed in order to
select two care settings for further ethnographic research, including participant
observation and interviews (Chapter 5 and 6). Based on all the data together with
input from relevant stakeholders a practice guideline was developed (Chapter 7).
The purpose of mixing methods was to increase our understanding of the same
complex phenomenon: good care with ST, but also to ensure the rigor of this study,
by increasing credibility (validity) and reliability. For instance the literature review
provided insight in the ethical and practical aspects of ST in the residential care of
people with dementia and/or ID. Subsequently, these aspects were further
investigated by concept maps from the perspectives of relevant stakeholders:
ethicists, (developmental) psychologists, physicians and nurses/support staff. By
itself, concept mapping is challenging because of its limited generalization, but in
this thesis, concept mapping was primarily seen as an exploratory tool which can aid
in research and planning and provide a starting point to explore a topic more
elaborately (Trochim, 1993).
The first three studies (Chapters 2-4) subsequently contributed to the generation of
broad ‘sensitizing concepts’ and also provided the basis on which an exploratory
survey was designed to select two care settings for further ethnographic research
(see also figure 1 in the general introduction). The ethnographic study provided us
with an in-depth thorough understanding of social interactions and cultural
dimensions of ST in residential care, the local logic of the practices, from multiple
stances: nursing and support staff and clients. The ethnographic studies consisted of
a mix of data collection methods: participant observation where behavioral
observation was central and additional formal and informal interviews with staff and
relevant others.
Subsequently, we gathered information from the clients’ files to triangulate the data
collection in order to create a better and wider understanding of these experiences.
Although there is a risk in including other perspectives as it could lead to conflicting
perspectives and contradicting information, observation alone would probably not
have elicited as much variety and richness of information, including comparisons
with the situation before the implementation of ST. Hence, triangulation of methods
was present in the individual studies as well as the study as a whole and this increased
its quality.
During the field studies the process of analysis was discussed with other members
of our research group and the research findings were shared with an advisory panel
of experts from in the field, with whom preliminary results of the ethnographic field
studies were discussed (‘peer debriefing’). If there were discrepancies in the analysis,
these would first be resolved in the research group, and if necessary through
consultation with the panel of experts. This increased the quality of our study.
Limitations and strengths
The study has strengths and limitations. First the limitations will be discussed. This
thesis combined the study of two vulnerable populations in long term residential
care: people with dementia and people with intellectual disabilities, and the
application of surveillance technology in this setting. This combination might be
considered as a limitation as despite overlapping features (such as dual diagnoses of
dementia and ID) there are also intrinsic differences between these two subgroups,
particularly with regard to age, health and duration of long term care needs. Due to
the fact that both populations require highly similar comprehensive personal care
and are subject to the same rights and for reasons of funding, they were both
included in this study. Moreover, it might also be considered as a strength as it
produces a richer and deeper understanding of the comparable ethical questions that
arise with the application of surveillance technology in both populations.
Another limitation concerns the way the concept maps were generated in the study
of Chapter 3 and 4. All participants were placed with each other, which might have
influenced the statements as participants will automatically tend to react to each
other. An option might have been to separate all participants, asking them to finish
the focus sentence on their own. However, this would have been too timeconsuming and might also have generated either too similar or too few results. Also
the difference in number of included participants per group (i.e. a larger group of
professional carers versus a smaller group of academics) might raise concerns.
However, these differences were purposefully chosen because it was thought
necessary to provide a counterweight towards the group of (presumably more vocal)
academic thinkers, and also to avoid the swaying of opinion through reverence
towards the academics.
Next, the limited size of the study population of Chapters 5 and 6 may decrease the
study’s quality. However this is not relevant to the aim of this study: due to the
explorative nature of this study the focus was on the extent of variation in which the
observed situations occurred, and how exemplary these situations were, rather than
statistical frequency (Glaser and Strauss, 1967; Corbin and Strauss, 2008). To
criticize qualitative research such as ethnography for a lack of acontextual
generalisability would then be innapropriate because it is precisely what is not being
sought (Mittelstadt, 2013); ethnographic research rather seeks to develop a
contextual understanding of the behavior in the natural environment it observes.
This aim does not mean that ethnography lacks generalisability, but rather that
theoretical generalization, i.e. transference must be separated from statistical
significance (Mittelstadt, 2013). Consequently, we are of the opinion that the
experiences we describe are tenable in other care nursing homes and residential care
facilities for people with ID, including those in other countries. This, however, is an
issue that warrants further study in other settings.
Another potential limitation might be regarding the poor implementation of ST in
both care settings, and whether the results would have differed, if the
implementation had differed. As stated above, two different Dutch (government
issued) reports have shown that the poor implementation of ST is a far more general
problem (Dutch Health Inspectorate, 2009; National Institute for Health and the
Environment, 2013) and as such not unique to the researched settings. What is more,
the fact that ST was poorly implemented also brought valuable insights, which could
be ultimately be utilized for the practice guideline.
The sequential nature of this study and the triangulation of methods is considered
to be a strength. Without a preliminary insight in the themes at hand, development
of the survey to select the settings in Chapters 5 and 6 could not have been possible
within the given timeframe and with the available resources. Despite the initial
themes based upon the systematic review of Chapter 2 and the concept mappings
of Chapters 3 and 4, which also generated ‘sensitizing concepts’, the research setting
was entered with an open stance, not limited to simply ‘checking’ the presence of
the outcomes of the review and concept mappings. On the contrary, by critically
reflecting on all observations and peer debriefing on all interpretations of the
observations and interviews, this open and inductive approach was ensured. Only
after the empirical work, in this Discussion chapter, the outcomes of the empirical
studies are related to the literature review and concept mappings.
Furthermore, the studies honored multiple paradigms of research traditions: the
literature review and concept mappings are grounded upon a more positivist stance,
whilst the ethnographic studies honor interpretative and relational dimensions of
practices and the intertwinedness of the knower and known. In mixed methods
research, this is called a multiple paradigm approach (Greene, 2007).
CONCLUDING REMARKS
This thesis started with the question what good care with ST entails. It used an
explorative empirical ethical approach to answers this question, based on different
methodologies, in order to shed light on multiple facets of the same complex
phenomenon: good care with ST. Based on the findings it might be concluded that
although the use of ST in residential care generates considerable ethical debate, this
debate lacks profundity. When it comes to views on the application of ST of care
professionals and ethicists, there appears to be an inherent duality, rooted in the
conflict of safety versus autonomy, whereby embracing an ideal such as autonomy
shifts according to the locus of responsibility. What is more, elaboration on ethical
issues that arise with the application of ST has proven to be very difficult.
Certain envisaged benefits and feared drawbacks of ST do not resemble actual
practice. Nurses and support workers use certain ST devices intensively and in a
creative, individualized way, however with regard to other ST are reluctant to take
risks, valuing safety over autonomy, which is in part based on fear amongst nurses
and support workers of incidents that might occur. Consequently safety and physical
proximity are dominant values for nurses and support workers. What seems to
underlie this local logic is both a dominant punitive discourse of risk and safety, but
also the fact that within the context of long term care the concept of autonomy is
difficult to delineate. Care redefined as a practice of risk might encourage the
promotion of autonomy of clients, however this would also require a different
conception of autonomy which is not based on a narrow bioethical conception of
autonomy defined as independence and rational choice but is more sensitive to the
social context in which people live.
However, this narrow conception of autonomy also seems to pervade the design of
ST devices as an implicit norm, leading to ambivalent client experiences, with each
device bringing its own connotation or experience. Though ST might increase the
freedom of movement of the client as it opens up new spaces for clients, this does
not imply that all clients actually value or cope with this new space. Consequently,
good care with ST should ideally revolve around an application that offers the client
a meaningful, beneficial addition to their lives, which might be achieved by
supporting the client in their needs and wants, but also respecting what they do not
want or need. Nevertheless, involving a client with diminished decisional capabilities
can be challenging. What is more, the deficient procedure of informed consent in
relation to the increasingly invisible role of ST implores for additional,
comprehensive ethical approaches with regard to ST in long term care practices.
Therefore two different ethical approaches were tentatively explored: Nussbaum’s
capability approach as a threshold for evaluating the good life, which might provide
a practical and evaluative procedure in order to assess whether ST contributes to the
good life. Also Verbeek’s conception of technological design not as instrumental,
but as being mediatory can make explicit how certain technologies (implicitly) shape
our lives, which also has implications for the ethical accompaniment of (new)
technologies.
Both approaches imply a more evaluative accompanying approach when it comes to
defining norms for good care with ST, based on how the good life with ST might
be achieved, rather than on a negative account of autonomy. When aiming for
morally sound care with ST in residential care we thus need to continue to critically
evaluate practices of ST so that it becomes clear what one expects of care with ST
and whether and how these expectations might be met, taking into account the
perspectives and prevailing values of all stakeholders, but also the (implicit) norms
and ideals that are part of the technologies and practices themselves.
IMPLICATIONS AND RECCOMENDATIONS FOR PRACTICE,
POLICY AND RESEARCH
Practice and policy
Surveillance technology (ST) could function as a potential solution to several
residential care settings facing demographic, financial and service pressure. It could
also be a more desirable alternative to classic forms of freedom restriction or
restraint, such as bed straps or a locked door, thus providing more autonomy for the
client. As such ST is welcomed by care providers with great optimism and eagerness,
as it is perceived to be an improvement compared to the previous situation, with a
near lackadaisical disregard for the ethical implications of these technologies. This
may in part be caused by the fact that currently it is felt there is a lack of any kind of
normative framework which care providers can recourse to with regard to the
application of ST.
Current and forthcoming Dutch laws do not give any direction. Although the
forthcoming law on the use of restraints ‘Zorg en dwang’ (Care and coercion)
(Kamerstukken 31996) explicitly states no form of involuntary care is allowed
(without consent), unless ‘serious disadvantage’ occurs, it is questionable whether
this stance is viable, more so with regard to the application of ST. Nevertheless,
there are often implicit norms that seem to direct both caregiver and client in their
use and experience of ST, which can lead to too much emphasis on either safety or
on autonomy. How then can we better attune normative discourses to the social
context in which care with ST is given?
Encouraging, supporting and embedding normative learning processes of caregivers,
which might for instance be supported through different methods of moral
deliberation, is essential in organizing good care, but also to enhance their
engagement and sense of purpose when working with ST (Van den Ende 2011).
Care professionals and organizations need to be sufficiently aware of the different
(i.e. societal, institutional, professional and personal) levels of normativity which are
at stake when providing good care with ST. Consequently nurses and support
workers should always be provided with the opportunity to learn and to engage in a
(normative) dialogue when looking for the right balance between conflicting
(implicit or explicit) norms, contexts, situations and interests of all stakeholders (cf.
Van den Ende, 2011). To that end, a predetermined and internally supported, well
formulated, care vision and safety policy on ST, would a great starting point.
However this should remain open for continual reassessment and evaluation.
Chapter 7 provides (a summary of) a practical guideline which can help both
caregivers in recognizing the different normative issues that arise with the
application of ST and assist residential care settings in formulating a care vision and
policy on ST: it is based on the research of this thesis. The guideline should not be
regarded as a definitive norm for the responsible application of ST, but rather as an
accompaniment or ‘outreach’ for care settings, professional organizations and also
branch organisations, with which they can work and further specify their own visions
and policies on care with ST.
This is also in line with the recommendations by the Dutch Health Inspectorate
(2009), who stated that branch organizations and professional associations should
further develop their own norms for the field, including proficiency requirements
and training opportunities with regard to the responsible application of ST (Dutch
Health Inspectorate, 2009). In addition, it was recommended that knowledge (i.e.
educational or research) institutions should also contribute towards the outlining of
an ethical, legal and social framework with regard to the application of ST.
Although the National Institute for Health and the Environment has recently
published a study on (the risks of) assisted living technologies (including ST) in long
term care, thereby -in their own words- providing healthcare providers ‘guidance in
performing a risk assessment and duly mitigate the identified risks’ (National
Institute for Health and the Environment, 2013: p.4), it is still unclear how one
should go about developing a broader normative framework for the application of
ST.
Accordingly a two pronged approach is recommended here, where, on the one hand,
a more ‘traditional’ mode of ethical evaluation of current ST might be carried out,
still based on how the good life with ST might be achieved, which also requires a
more organic undertaking, using direct input from the field. The second prong is
less traditional and based on the idea that the development of technology co-occurs
with and is shaped by the development of norms.
Thus the recommendation to the field is not to await the ready made arrival of ST
products and subsequently assess whether or not they are ethically viable, but instead
to get involved in a much earlier conceptual stadium, whereby (ethical) input from
the field is the driving force of the product’s design. From a practical point of view,
this might be initiated, coordinated and monitored by the branch organizations
(VGN and ACTIZ respectively), also to employ their capabilities for public affairs
(lobby), as only they are capable to translate the signals from their multiform
adherents into an unequivocal message towards politics, insurance companies and
supervisory bodies.
This two pronged approach could contribute towards morally sound care with ST
in both an early (conceptual) stadium and later (evaluative stadium), and is also in
alliance with the vision of the Ministry of Health, Welfare and Sport (VWS) that
responsible care: a) observes guidelines which are developed together with the field
and b) are continuously monitored, evaluated and amended (Dutch Health Care
Inspectorate, Association of Health Care Insurers in the Netherlands and LOC
Voice in Healthcare, 2013).
Future research
As stated above continual evaluation is needed with regard to the normative
assessment of ST in residential care, which should allow for more flexible, yet
comprehensive criteria, instead of merely asking for informed consent. The
capability approach provides a tentative starting point, though more research,
specifically aimed at local practices of ST, is needed on whether and how such a list
might work in the context of ST in residential care. There has been a recent upsurge
in research with regard to the practical applicability of the capability approach in an
array of specific contexts, including sheltered long term care (Pirhonen, 2014) and
technology engineering and design (Oosterlaken, 2013). A next step might be to use
these and other contributions as stepping stones, amending and suiting it to the
context of ST in residential care, and subsequently researching its usability in
practice.
With regard to the process of designing ST, this would benefit from viewing ST not
as instrumental, but as being mediatory, as it can make more explicit how certain ST
(implicitly) shape our lives. Concurrently any future research might want to focus on
how (implicit) norms are designed into ST (and related technologies) and how they
influence the good life. The important work of Pols on telecare in the community
care setting, although not about technology design in particular, does show the
adaptive use of technology by care professionals, as they also ‘work around’ the
norms scripted in telecare devices, trying to make the devices fit with their own plans
of good use (Pols, 2010). These findings might also be transposed to the residential
care setting, which ultimately requires more (qualitative) research of care practices.
Because the topic of this thesis is ultimately a highly complex one, it should ideally
always be approached from a multi perspectival and contextual stance, using
multiple methods, including other (qualitative) approaches such as discourse
analysis, institutional ethnography and phenomenological research, which are aimed
at locality rather than universality, and cover a wide range of different perspectives
and experiences of all the relevant stakeholders. As this thesis has not elaborated on
the perspectives on family in our studies (an inherent limitation of this research)
more research into family experiences of ST in residential care is especially
recommended, as they play an important role in the decision making process with
regard to ST. Given that chapter 7 provides (a summary of) a practical guideline for
the field, it would also be of interest to do further research with regard to its
implementation, as this research might yield new insights as to how the normative
assessment of ST might work in practice.
Finally, as (the notion of) ST has almost become outdated due to the miniaturization
of technology, and is gradually being replaced by ‘ambient intelligence’, potential
applications are becoming more complex. Consequently any field of ethics of
technology will require ongoing research, both conceptual and empirical to keep up
with the continually changing developments.
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S
AMENVATTING
PROEFSCHRIFT
D
e komst van toezichthoudende vormen van woonzorgtechnologie (domotica) is een
veelbelovende ontwikkeling voor de residentiële zorg. Domotica kan een kosteneffectieve manier
zijn om onderbezetting te compenseren omdat het menselijk toezicht kan ondersteunen of zelfs
vervangen. Domotica kan ook gebruikt worden om de kwaliteit van leven van mensen met dementie of een
verstandelijke beperking te verbeteren, omdat domotica kan worden aangewend als alternatief voor klassieke
vormen van vrijheidsbeperking en als ondersteuning van de zelfstandigheid van de cliënt. Deze verschillende
mogelijkheden maken dat het investeren in domotica een populaire keus is voor residentiele zorginstellingen
in Nederland. Het is echter onzeker of de inzet van domotica in de praktijk de hoge verwachtingen zal gaan
waarmaken.
De toepassing van domotica roept ook ethische vragen op. Deze vragen hebben onder andere betrekking
op datgene wat met de domotica wordt nagestreefd (ondersteunend of monitorend), op de rol van domotica
in het zorgproces en op de gevolgen van domotica voor de individuele vrijheid, privacy, waardigheid van de
cliënt. Wetgeving en normatieve richtlijnen met betrekking tot domotica ontbreken nog, waardoor het
werkveld geen houvast heeft ten aanzien van deze ontwikkelingen.
Dit proefschrift probeert te verkennen wat goede zorg met toezichthoudende vormen van domotica in
residentiele settings voor kwetsbare mensen inhoudt. In het onderzoek is gebruik gemaakt van een getrapte
exploratieve aanpak. Na een algemene verkenning van aanleiding en onderwerp in hoofdstuk 1, doet
hoofdstuk 2 verslag van een literatuuronderzoek naar de ethische en praktische aspecten van
toezichthoudende domotica in de residentiele zorg. Dit literatuuronderzoek toonde dat het gebruik van deze
technologieën een omvangrijk ethisch debat oplevert. In de bestudeerde literatuur kwamen drie
perspectieven naar voren: dat van de instelling; van de cliënt; en van de zorgrelatie. De auteurs wezen op
mogelijke voordelen, maar uitten ook zorgen. Terugkerende thema’s waren zorgplicht versus autonomie, de
waardigheid van de client, informed consent en privacy. Deze thema’s werden in de bestudeerde literatuur
nauwelijks uitgediept. Ook viel het gebrek aan aandacht voor het cliëntperspectief op en besprak de
literatuur voornamelijk de situatie van mensen met dementie en nauwelijks die van mensen met een
verstandelijke beperking.
In hoofdstuk 3 en 4 wordt twee maal een ‘concept mapping’ beschreven om de vraag verder uit te diepen
wat goede (of in dit geval ‘ideale’) zorg met toezichthoudende domotica zou zijn, voor twee subgroepen:
mensen met dementie en verstandelijk gehandicapten. In beide concept mapping studies zijn er zowel
zorgprofessionals als academici uitgenodigd. Analyse van de concept mapping deed vermoeden dat mensen
die meer direct betrokken zijn bij de zorg voor cliënten (dat wil zeggen professionele zorgverleners) inherent
meer bezorgd zijn over de veiligheid van de cliënten dan over hun autonomie. Mensen die meer op afstand
staan, in dit onderzoek academici, vonden juist autonomie belangrijker dan veiligheid. Beide groepen
deelnemers diepten de gehanteerde ethische begrippen echter nauwelijks uit.
De concept mapping studies leverden vergelijkbare resultaten op, in het bijzonder voor wat betreft de
prioritering van veiligheid versus autonomie en het gebrek aan uitdieping van de gehanteerde ethische
begrippen. Uit beide studies kwam naar voren dat een ‘ideale’ toepassing van toezichthoudende domotica
in residentiele zorg een toepassing is die een goede balans zoekt tussen autonomie en veiligheid, al werd
tegelijk een inherent conflict waargenomen tussen deze beide waarden.
Vervolgens werd een exploratief onderzoek opgezet om tot de selectie te komen van twee zorginstellingen
(een verpleeghuis met een psychogeriatrische afdeling en een residentiele setting voor verstandelijk
gehandicapten) waar de besproken thema’s van hoofdstuk 2, 3 en 4 nader verkend konden worden. De
hierbij gebruikte methode was die van het etnografisch onderzoek. Er werd speciaal aandacht besteed aan
de ervaringen van het verzorgend en ondersteunend personeel en hoe deze ervaringen verband hielden met
mogelijke voordelen en nadelen van toezichthoudende domotica (hoofdstuk 5). Ook werd onderzocht hoe
deze domotica wordt ervaren door cliënten die eraan worden blootgesteld (hoofdstuk 6).
Hoofdstuk 5 bespreekt dat bepaalde beoogde voordelen en gevreesde nadelen van toezichthoudende
domotica niet altijd de huidige praktijk weerspiegelen. Het verzorgend en ondersteunend personeel blijkt in
deze studie sommige toezichthoudende domotica intensief en op een creatieve, geïndividualiseerde manier
te gebruiken. Met bepaalde andere toepassingen echter is men niet geneigd om risico te nemen, daarbij dus
veiligheid boven autonomie stellend. Deze houding bleek gedeeltelijk voort te komen uit de angst die bestaat
onder het zorgend en ondersteunend personeel dat er zich incidenten zouden kunnen voordoen. Veiligheid
en fysieke nabijheid blijken dominante waarden voor verpleegkundigen, verzorgenden, begeleiders en
ondersteuners. Deze ‘lokale logica’ lijkt twee oorzaken te hebben. Enerzijds is er in onze op risico en
veiligheid gerichte samenleving de neiging schuldigen aan te wijzen bij incidenten, anderzijds is het in de
medische ethiek zo belangrijke concept van autonomie moeilijk te definiëren binnen de context van de
langdurige zorg.
De veel gebruikte medisch-ethische opvatting van autonomie lijkt echter ook het design van
toezichthoudende domotica te bepalen. In hoofdstuk 6 wordt beschreven dat de cliëntervaringen met
toezichthoudende domotica dienovereenkomstig ambivalent zijn. Verschillende toepassingen brengen
verschillende ervaringen met zich mee. Alhoewel domotica de bewegingsvrijheid van de cliënt doet
toenemen, aangezien er letterlijk en figuurlijk meer deuren voor cliënten opengaan, wordt dit niet door alle
cliënten gewaardeerd en kunnen niet alle cliënten met deze nieuwe vrijheid omgaan. Wat aan het design van
toezichthoudende domotica ten grondslag leek te liggen was een vooronderstelling van een ‘ideale gebruiker’
als een zelfstandigheid zoekend persoon die weet waar te gaan en welke betekenis daaraan te verbinden. Dit
kan in tegenspraak zijn met de daadwerkelijke gebruiker, die voordeel kan hebben bij de toegenomen
vrijheid, maar ook steun op maat nodig heeft om daadwerkelijk van die vrijheid te kunnen genieten.
Daarnaast bleek dat cliënten zich minder bewust zijn van de aanwezigheid van domotica als de toepassing
minder zichtbaar is. Daarom wordt het consulteren van de cliënt moeilijker naarmate de toepassing van de
domotica minder merkbaar is. Verzet van clienten tegen domotica zal in dat geval minder voorkomen.
Hoofdstuk 7 biedt een Engelstalige samenvatting van een praktische handreiking die zorgverleners kan
helpen bij het herkennen van de normatieve vraagstukken die zich voordoen bij de toepassing van
toezichthoudende domotica. De handreiking kan zorginstellingen ondersteunen bij het formuleren van een
zorgvisie en beleid met betrekking tot toezichthoudende domotica. Deze handreiking is gebaseerd op het
in dit proefschrift beschreven onderzoek.
In de discussie (hoofdstuk 8) wordt beargumenteerd dat het herdefiniëren van de zorg als een inherente
‘risicopraktijk’ kan helpen om meer oog te hebben voor de autonomie van cliënten. Dit zou echter ook
vragen om een andere opvatting van autonomie, één die niet gebaseerd is op een beperkt medisch-ethisch
concept van autonomie en informed consent. Een opvatting van autonomie die niet uitgaat van
onafhankelijkheid en rationele keus, maar rekening houdt met de sociale context waarin mensen leven. Het
kan uitdagend zijn om een cliënt met een verminderde beslissingsbekwaamheid te betrekken bij de
besluitvorming rondom domotica. De in deze situatie duidelijk tekortschietende procedure van informed
consent in relatie tot de toenemende onzichtbare rol van toezichthoudende domotica vraagt om een meer
omvattende ethische benadering met betrekking tot de normatieve evaluatie van domotica.
Er werden vervolgens twee verschillende ethische benaderingen onderzocht die tot een bredere opvatting
van goede zorg met domotica kunnen leiden. Enerzijds de capability theorie van Nussbaum en anderzijds
de technologie-filosofie van Verbeek. Nussbaum’s lijst van capabilities kan worden opgevat als een
ondergrens voor een waardig en goed leven en kan in die zin een praktische en evaluatieve procedure
verschaffen om vast te stellen of toezichthoudende domotica bijdraagt aan dit goede en waardige leven.
Verbeek constateert een mediërende rol voor technologie in tegenstelling tot een instrumentele rol.
Technologie vormt volgens Verbeek (impliciet) ons leven, daarom is het van belang om expliciet te maken
hoe bepaalde technologieën ons leven beïnvloeden. Beide theorieën impliceren - anders dan bij een
eenzijdige focus op autonomie - een evaluatieve benadering wanneer het gaat om het definiëren van normen
voor goede zorg met domotica, gebaseerd op hoe het goede en waardige leven met domotica bereikt kan
worden.
Wanneer we moreel goede zorg beogen met domotica in de residentiele zorgsetting, moeten we doorgaan
met het kritisch evalueren van het in praktijk brengen van domotica. Dan wordt duidelijk wat men verwacht
van zorg met domotica en of deze verwachtingen worden waargemaakt. Men dient daarbij rekening te
houden met de (impliciete) normen en opvattingen over goede zorg die inherent zijn aan de praktijken en
technologieën.
Een van de aanbevelingen voor het werkveld, voortkomend uit de discussie, is niet te wachten op de komst
van domoticaproducten om vervolgens te beoordelen of ze wel of niet aan ethische normen voldoen, maar
in plaats daarvan al mee te denken in een veel eerder (conceptueel) stadium, waarbij ethische input vanuit
het werkveld dan de drijvende kracht achter het ontwerp van een product kan zijn. Vanuit praktisch oogpunt
kan dit worden geïnitieerd, gecoördineerd en gemonitord door de brancheorganisaties (respectievelijk VGN
en Actiz).
Verder onderzoek zou idealiter altijd vanuit verschillende perspectieven moeten worden benaderd die recht
doen aan de ervaringen van alle relevante stakeholders, in het bijzonder familieleden. Hierbij is het van
belang om altijd een contextueel vertrekpunt te nemen en gebruik te maken van verschillende methodes die
gericht zijn op lokaliteit in plaats van universaliteit. De praktische handreiking in hoofdstuk 7 vraagt tenslotte
om onderzoek met betrekking tot de implementatie ervan. Dergelijk onderzoek kan nieuwe inzichten
opleveren over hoe de normatieve beoordeling van toezichthoudende domotica zou kunnen werken in de
praktijk.
T
HESIS
SUMMARY
S
urveillance technology (ST) has great promise in long term residential care, as it might prove a cost
effective answer to understaffing by taking the place of, or aiding or enhancing human supervision.
On the other hand ST might be used as a means of enhancing the quality of life for people with
dementia or intellectual disabilities (ID), either by employing it as an alternative to classic forms of restraint
and or by supporting and retaining autonomy. These many potential uses of ST have made it a popular
choice for many residential care settings in The Netherlands, propelling them to invest heavily in (the future
of) ST.
However it is not known whether ST fulfils its promises in practice. The application of ST also gives rise to
ethical questions. These questions concern (amongst others) the purposes of ST (assistive or monitoring),
its role in the care giving process, and its effects on individual freedom, privacy and dignity. In addition,
current legislation is lacking with regard to ST; the field cannot recourse to a clear normative framework
when it comes to these developments.
This thesis accordingly aims to explore what good care with ST in residential care for people with dementia
and ID entails, using a multistep explorative approach (including literature review, concept mapping and
ethnographic field study). Chapter 2, which is a literature review on the ethical and practical aspects of ST
in residential care, shows that the use of ST generates considerable ethical debate. Analyses of all the topics
have shown they all dealt, in one way or another, with three perspectives: that of the institution; the client;
and the care relation. Besides enthusiasm, many concerns were raised, which center on recurrent themes
that lacked profundity, such as (duty of care versus) autonomy, dignity, consent, and privacy. In addition,
there was little attention to the client perspective and hardly any mention of people with ID.
In Chapter 3 and Chapter 4 concept mappings were subsequently performed to further probe into the
question of what good (or in this case: ‘ideal’) care with ST might involve, including two subgroups,
dementia care and ID care. Further analysis suggested that people who are more involved directly with the
care of residents (i.e., professional carers) are inherently more concerned about the safety of clients as
opposed to autonomy, than those who are involved from a distance (i.e., the academics).
In addition, participants found it difficult to elaborate on ethical themes they deemed important. Both
studies produced very similar results, particular with regard to the prioritization of safety versus autonomy
and lack of elaboration. Both studies are united in viewing an ‘ideal’ application of ST in residential care as
an application that strikes a good balance between autonomy and safety, even though in both cases an
inherent conflict is experienced between these values.
An explorative survey was then designed in order to select two care settings for further in- depth exploration
of the themes raised in Chapters 2, 3 and 4. The method that was subsequently used was ethnographic
research. Specific attention was paid to the experiences of nursing and support staff and how this related to
envisaged possible benefits and drawbacks of ST and how ST is experienced by clients who are exposed to
it (Chapter 6).
Chapter 5 shows that certain envisaged benefits and feared drawbacks of ST do not resemble actual practice.
The nurses and support workers in the ethnographic study use certain ST devices intensively and in a
creative, individualized way, however with regard to other ST are reluctant to take risks, valuing safety over
autonomy, which is in part based on fear amongst nurses and support workers of incidents that might occur.
Consequently safety and physical proximity are dominant values for nurses and support workers. What
seems to underlie this local logic is both a dominant punitive discourse of risk and safety, but also the fact
that within the context of long term care the bioethical concept of autonomy is difficult to delineate.
However, this conception of autonomy also seems to pervade the design of ST devices as an implicit norm,
as the client experiences of ST in the ethnographic study in Chapter 6 were found to be ambivalent, with
each device bringing its own connotation or experiences. Though ST might increase the freedom of
movement of the client as it opens up new spaces for clients, not all clients actually valued or coped with
this new space. What seemed to underlie the design of ST devices was a presupposition of an ideal user as
an independence seeking agent who knows where to go and make meaning of this, which can be at odds
with the actual user, who might benefit from the increased freedom but also needs tailored support to
actually be able enjoy this freedom.
In addition, the less obtrusive devices are, the less aware clients seemed to be of their presence, which shows
that consulting the client (and subsequent resistance to ST measures by the client) becomes more difficult
as ST increasingly goes unnoticed and/or becomes less visible. Chapter 7 provides (a summary of) a practical
guideline which can help both caregivers in recognizing the different normative issues that arise with the
application of ST and assist residential care settings in formulating a care vision and policy on ST: it is was
based on the research of this thesis.
In the discussion section of this thesis, it is argued that care redefined as a ‘practice of risk’ might encourage
the promotion of clients’ autonomy, however this would also require a different conception of autonomy
which is not based on a narrow bioethical conception of autonomy defined as independence and rational
choice, but is more sensitive to the social context in which people live. Nevertheless, involving a client with
diminished decisional capabilities can be challenging. What is more, the deficient procedure of informed
consent in relation to the increasingly invisible role of ST implores for additional, comprehensive ethical
approaches with regard to ST in long term care practices.
Therefore two different ethical approaches were tentatively explored: Nussbaum’s capability approach as a
threshold for evaluating the good life, which might provide a practical and evaluative procedure in order to
assess whether ST contributes to the good life. Also Verbeek’s conception of technological design not as
instrumental, but as being mediatory to make explicit how certain technologies (implicitly) shape our lives,
which also has implications for the ethical accompaniment of (new) technologies.
Both approaches imply a more evaluative accompanying approach when it comes to defining norms for
good care with ST, based on how the good life with ST might be achieved, rather than on a negative account
of autonomy. When aiming for morally sound care with ST in residential care we thus need to continue to
critically evaluate practices of ST so that it becomes clear what one expects of care with ST and whether
and how these expectations might be met, taking into account the (implicit) norms and different levels of
normativity that are part of the technologies and practices themselves.
One of the recommendations to the field is thus not to await the readymade arrival of ST products and
subsequently assess whether or not they are ethically viable, but instead to get involved in a much earlier
conceptual stadium, whereby (ethical) input from the field is the driving force of the product’s design. From
a practical point of view, this might be initiated, coordinated and monitored by the branch organizations
(VGN and ACTIZ respectively). Future research should ideally always be approached from a multi
perspectival and contextual stance, using multiple methods which are aimed at locality rather than
universality, and cover a wide range of different perspectives and experiences of all the relevant stakeholders,
particularly family members. Given that chapter 7 describes (a summary of) a practice guideline for the field,
it would also be of interest to do further research with regard to its implementation, as such research might
yield new insights as to how the normative assessment of ST would work in practice.
D
ANKWOORD
2
“Piglet noticed that even though he had a Very Small Heart, it could hold a rather large
amount of Gratitude.”
― A.A. Milne, Winnie-the-Pooh.
H
oewel volgens de filosoof Aristoteles dankbaarheid snel veroudert, ben ik
nochtans de vele mensen niet vergeten die mij reeds jaren geleden op weg
hebben geholpen om dit proefschrift tot een goed einde te laten komen.
Allereerst gaat mijn dank uit naar alle bewoners, clienten en hun families, die hebben
toegestaan dat ik tijdelijk een kijkje bij hen in de keuken kon nemen. Zonder hun
akkoord en medewerking had een groot deel van dit onderzoek nooit uitgevoerd
kunnen worden. Dat geldt overigens ook voor de verzorgenden, verpleegkundigen,
ondersteuners, begeleiders en artsen met wie ik mee kon lopen gedurende enkele
maanden en iedereen die bereid was tot het geven van een aanvullend interview. Ik
heb zo veel geleerd van deze ervaringen en als gevolg daarvan is mijn kijk op de
intramurale zorg definitief ten goede veranderd. In het bijzonder wil ik hier twee
mensen noemen die mij zeer hebben geholpen om en een en ander te faciliteren met
betrekking tot het veldonderzoek: Deborah en Sergio. Ook wil ik bij deze alle
instellingen danken voor het invullen van de vragenlijst en tevens alle deelnemers
van de concept mapping sessies nogmaals bedanken voor hun deelname en
waardevolle inbreng. Zonder wezenlijke input van praktijkmensen die met hun
voeten in de klei staan was dit een heel ander proefschrift geworden.
Natuurlijk wil ik mijn promotor Cees Hertogh en co-promotoren Brenda Frederiks
en Marja Depla bedanken. Cees, dank voor het feit dat je de gok hebt genomen om
een jonge filosoof aan te stellen met nul empirische onderzoekservaring. Hoewel het
soms een hobbelige weg was door allerlei omstandigheden, heb ik door jouw
voortreffelijke bewaking van de voortgang en kaders altijd het vertrouwen gehad dat
het goed zou komen. Daarbij heb ik onze één op één inhoudelijke gesprekken altijd
heel prettig en inspirerend gevonden en voel ik me meer en meer versterkt in het
vermoeden dat je deep down uiteindelijk meer een filosoof bent dan een arts (!).
Brenda, jou wil ik vooral bedanken voor keeping me sane. Je laagdrempeligheid,
belangstelling en steun als er iets was met Samuel of met mijzelf, maar ook je parate
juridische expertise, kraakheldere input en no nonsense mentaliteit hebben er wat
mij betreft zeker toe bijgedragen dat mijn onderzoek op een goede manier is
afgerond. Tenslotte Marja: ik ken weinig denkers die scherper zijn dan jij- you kept me
on my toes en je hebt mij echt een betere onderzoeker gemaakt. Dank voor het feit
3
dat je altijd even meer tijd nam dan noodzakelijk was om goed tot de kern te komen
van waar het om ging.
Mijn dank gaat ook uit naar Johan Legemaate en Jan Eefsting die in een eerder
stadium betrokken waren bij mijn onderzoek – ik heb jullie inbreng als zeer
waardevol ervaren en vond het erg prettig om met jullie samen te werken. Ingrid
Riphagen en Anneke Francke wil ik bedanken voor hun belangrijke bijdrage aan
twee artikelen, Ineke Kok and Kathy Oskam voor het begeleiden van de concept
mapping sessies, Tess Savenije voor de vormgeving van de handreiking en Arend
van Dam voor het maken van de cartoon van deze mooie omslag en voor zijn
geweldige cartoons voor de handreiking. Mijn dank gaat ook uit naar mijn vroegere
ethiekdocent –inmiddels professor- Marcel Verweij, die mij oorspronkelijk op dit
pad zette, en naar Rutger de Graaf voor zijn praktijkkennis en last minute hulp.
Speciale dank ook aan de leden van de begeleidingscommissie van dit onderzoek
voor hun zeer actieve inzet en inbreng gedurende het onderzoek en de
totstandkoming van de handreiking, in het bijzonder Frans Ewals en Jenneke van
Veen, maar zeker ook Tineke van Sprundel, Alice Dallinga, Majorie de Been, Robert
Helle, Yvonne van Gilse en Mieke van Leeuwen.
Tevens wil ik hierbij de promotie commissie bedanken voor de tijd en energie die
gestoken is in het beoordelen van mijn proefschrift: prof. dr. Jos Schols, prof. dr.
Jos Dute, prof. dr. Petri Embregts, dr. Eveline Wouters, prof. dr. Cordula Wagner
en prof. dr. Jeannette Pols.
Dan mijn paranimfen Niek en Marie-José. Niek: ik vind het ontzettend leuk dat je
als een van mijn oudste vrienden mijn paranimf bent en ik dank je voor alle moral
support in de meer dan 20 jaar dat we elkaar kennen. MJ, als mijn favoriete collega
en goede vriendin had niemand anders dan jij mijn andere paranimf kunnen zijn. Ik
hoop nog lang met je samen te werken of gewoon samen bijeen te komen en lekker
plaatjes te draaien.
Tevens ben ik mijn oude kamergenoten van de afdeling Ouderengeneeskunde
dank verschuldigd voor alle gesprekken, adviezen en collegialiteit. Het hebben van
kamergenoten was een wezenlijk onderdeel van mijn onderzoeksleven aan de VU
en sommige inhoudelijke gesprekken hebben mij beslist geholpen om verder te
komen. Mijn kamergenoten van het eerste uur op de vierde verdieping: Mirjam, die
een ideale en uiterst betrouwbare kamergenoot was en Marike die als voorloopster
mij enorm heeft geholpen met vele verschillende regeldingen maar bij wie ik ook
terecht kon voor het uitwisselen van promovenduservaringen. Dan naar de vijfde
verdieping: Henriette, dank aan jou voor je hulp en gezelligheid en dank aan
4
Suzanne voor onze fijne gesprekken over chronische ziekte en politiek. Sandra: ik
heb zeer goed met je samen kunnen werken, wat in korte tijd tot een paar mooie
artikelen heeft geleid, waar ik nog regelmatig aan refereer. Voorts Lisa, Simone en
Nienke, jullie zijn erg prettige kamergenoten geweest en ik wens jullie veel succes
met het (op korte termijn) afronden van jullie projecten.
Ook wil ik hier speciaal Salomé noemen, die als ultieme matriarch van de afdeling
mij veel werk uit handen heeft genomen en altijd in was voor een praatje. Alle
andere (voormalig of oud-) collega’s van de afdeling - waarbij ik hoop dat ik
niemand vergeet- dank voor jullie collegialiteit: Rose-Marie, Wilco, Miel, Dinnus,
Bernadette, Franka, Jenny, Tessa, Laura, Ariadne, Lizette, Marijke, Nienke, Selma,
Marjoleine en natuurlijk Martin.
Inmiddels werk ik niet meer aan de VU, maar aan de UvH en dienovereenkomstig
wil ik ook graag een aantal van mijn huidige collega’s bedanken. Allereerst Frans
Vosman, dank voor het vertrouwen dat je altijd in mij hebt gesteld, je warme
collegialiteit en je begeestering waarmee je je vak bedrijft. Ik ben erg blij dat onze
paden zijn gekruist. Ook Carlo Leget ben ik veel verschuldigd. Ik vind het echt fijn
om (nog steeds) bij deze club zorgethiek te behoren, niet in de laatste plaats
dankzij jouw inzet en vertrouwen. Dan speciale dank aan mijn collega en
kamergenoot Merel Visse, die mij wezenlijk heeft geholpen met een laatste slag te
maken: dankjewel voor dat laatste zetje! Ook dank aan de andere themagroepleden:
Andries, Leo, Arko en natuurlijk (kamergenoten) Anne en Inge. Jullie zijn fijne en
bezielende collega’s waarvan ik hoop dat we in de toekomst nog prettig met elkaar
samen zullen werken. Alle andere collega’s en studenten van de UvH wil ik graag
bedanken voor hun bevlogenheid en enthousiasme. In het bijzonder noem ik graag
Dorothé voor haar medeleven en Joanna voor het mij wijzen op de
oorspronkelijke vacature aan de UvH.
Ook wil ik graag alle (oud-) leden van de CCC onderzoeksgroep noemen; een
bijzondere club prettige en inspirerende mensen waar ik elke keer nog veel van
leer. Met een aantal van hen hoop ik nog mooie onderzoeksplannen te kunnen
maken. En ik bedank graag ook alle andere collega onderzoekers en/of academici
die ik de afgelopen jaren ben tegengekomen en met wie ik ideeën heb kunnen
uitwisselen tijdens congressen, sympiosa en bij andere gelegenheden. Deze
gesprekken zijn naast leuk en interessant ook zeer behulpzaam geweest.
Uiteraard wil ik al mijn vrienden bedanken voor hun belangstelling, steun en
geduld gedurende de afgelopen jaren, maar ook voor het feit dat ze voor een hoop
relativering en humor zorgen.In het bijzonder noem ik graag de Enkhuizer boys:
5
Juun, Remko, Jitze, Niek, Bart, Merijn en mijn oude filosofiebuddy Jonathan. Jullie
zijn friends for life en ik hoop dat jullie het mij vergeven dat ik zo weinig sociaal
was de laatste tijd. Ook het Philosophenleesgezelschap ben ik dank verschuldigd
voor alle stimulerende avonden die mijn denken verscherpt hebben: René, Simon,
Jelle, Pepijn, Maarten en Wolf.
I would also like to thank Ricky and Leslie for me helping me out by making a
‘plan de campagne’ during our wonderful holiday in France. And all of my English
family and friends for their continuous interest and support- hope to see you all
again very soon! I have dedicated this thesis in part to the memory of my beloved
English grandfather Robert Mackie, who has taught me above everything that - in
the words of Rousseau - there is ‘no wisdom greater than kindness’.
Tot slot ben ik heel veel dank aan mijn (Nederlandse) familie verschuldigd.
Allereerst mijn schoonfamilie: Conny, die de beste schoonmoeder is die je als
schoonzoon kunt wensen. Dank voor al je hulp en medeleven! Graag noem ik ook
Alexandra, Kalle, Remco en Sanne en natuurlijk Opa Boendermaker, die altijd zeer
betrokken is geweest.
Mijn broers Andrew, Miley en mijn zusje Janey, die allen op hun wijze hebben
bijgedragen aan de totstandkoming van dit proefschrift. Dank voor jullie support
en medeleven. Hoe uitdagend het soms ook is om een van de vier te zijn, ik prijs
mij rijk en gelukkig met het (dicht in de buurt) hebben van zulke siblings.
Mijn ouders, die mij altijd onvoorwaardelijk gesteund hebben, bij wie ik altijd
terecht kan en van wie ik ook veel heb geleerd. Zonder jullie had ik nooit dit
proefschrift kunnen schrijven. Dank je wel papa voor alle maaltijden, zorg en je
last minute hulp. Dank je wel mama voor al je amazing editing en for always being
there, je bent the BEST mother.
Finally, mijn twee grote liefdes Wytske en Samuel die mij de kracht geven om elke
dag op te staan en door te gaan, ook als het even niet lijkt te gaan.
Mijn allerliefste kleine boy Samuel, je inspirireert mij elke dag om het leven met
een grote glimlach tegemoet te treden, je bent werkelijk een wondertje en ik hoop
nog heel erg lang van jou en je levenslust te kunnen genieten.
Wytske, mijn liefste lief, dank voor alles en for just being you- bij jou ben ik voor
altijd écht thuis.
6
A
7
BOUT THE
AUTHOR
8
A
listair Niemeijer was born in Hoorn, The Netherlands, to an English
mother and a Dutch father. After secondary school in Holland he studied
at Sussex Downs College in England for two years, obtaining his A-levels
in French, German, Sociology and Psychology. After travelling and working for a
year abroad in Israel, Paris and the Channel Islands, he studied Philosophy at the
Vrije Universiteit in Amsterdam where he obtained his bachelor’s degree in 2006.
He then continued his master’s degree in Applied Ethics at Utrecht University
where he graduated with honors in 2007. As a PhD student of the EMGO institute
at the VU University Medical Center from 2008, Alistair’s research has focused on
the ethics of surveillance technology in the care for people with dementia and
intellectual disabilities. Next to his PhD research, he was also involved in other
research projects, including a multi-disciplinary project on surveillance technology
as an alternative to physical restraints in Dutch nursing homes, and an
international project coordinated by Alzheimer Europe on the ethics of assististive
technology, which led to the publication of a guideline in 2010. As of 2013, Alistair
works as a university lecturer in care ethics at the University of Humanistic Studies.
Alistair lives in Amsterdam with his wife Wytske and their son Samuel. Besides his
work, his great passions are music, literature and football.
List of Publications
Niemeijer, A.R, Depla, M.F.I, Frederiks, B.J.M, Francke, A.L., Hertogh, C.M.P.M. (2014).
The use of surveillance technology in residential facilities for people with dementia or
intellectual disabilities: A study among nurses and support staff. Exploring the benefits and
drawbacks. American Journal of Nursing, 114, 12: 38-47.
Niemeijer, A., Depla, M., Frederiks, B., Hertogh, C. (2014). Autonomy under surveillance.
The experiences of people with dementia and intellectual disabilities with surveillance
technologies in residential care. Nursing Ethics. Published online before print June 9 doi:
10.1177/0969733014533237.
Niemeijer, A. (2014). Technologie voor kwetsbare mensen: hoe onschuldig is een
elektronische medicijndoos? Zorg en Recht in Praktijk, 1 (1): 17-21.
Niemeijer, A., Frederiks, B., Depla, M., Eefsting, J, Hertogh, C. (2013). The place of
surveillance technology in residential care for people with intellectual disabilities: is there an
ideal model of application. Journal of Intellectual Disability Research, 57 (3): 201-15.
Depla, M., Frederiks, B., Hertogh, C., Niemeijer, A. (2013). Weging van Waarden.
Denkbeeld, 25 (4): pp 6-9.
9
Niemeijer, Alistair (2013). ’Waarom gaat het bij kinderen met Down toch altijd over
medische risico's? Opinie, De Volkskrant 21 maart.
Niemeijer, A., Depla, M., Frederiks, B., Hertogh, C. (2012). Verantwoorde en zorgvuldige
toepassing van toezichthoudende domotica in de residentiële zorg voor mensen met dementie of een
verstandelijke beperking: Een handreiking voor zorginstellingen. Amsterdam: VUMC.
Niemeijer, A.R. (2012). The sweet promise of dignified technology? Intellectual disability,
surveillance technology and human dignity. In: Kijk anders, zie meer. Tien jonge wetenschappers
over disability studies. Den Haag: ZonMw.
Zwijsen, S.A., Depla, M.F.I.A., Niemeijer, A.R., Francke, A.L., Hertogh, C.M.P.M. (2012).
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