B.J.M. Frederiks

The experiences of people with dementia and intellectual disabilities with surveillance technologies in residential care

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.

The ideal application of surveillance technology in residential care for people with dementia

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.

Dialogical Nursing Ethics: the Quality of Freedom Restrictions

This article deals with the question of how ethicists respond to practical moral problems emerging in health care practices. Do they remain distanced, taking on the role of an expert, or do they become engaged with nurses and other participants in practice and jointly develop contextualized insights about good care? A basic assumption of dialogical ethics entails that the definition of good care and what it means to be a good nurse is a collaborative product of ongoing dialogues among various stakeholders engaged in the practice. This article discusses the value of a dialogical approach to ethics by drawing on the work of various nursing scholars. We present a case example concerning the quality of freedom restrictions for intellectually disabled people. Issues for discussion include the role and required competences of the ethicist and dealing with asymmetrical relationships between stakeholders.

The place of surveillance technology in residential care for people with intellectual disabilities: is there an ideal model of application

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, the use and application of surveillance technology (ST) in the care for people with ID provokes conflicting reactions among ethicists and healthcare professionals, and no ethical consensus has been reached as of yet. The aim of this study was thus to provide an overview of how ST is viewed by (care) professionals and ethicists working in the field 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 (ranging from ethicists, physicians to support workers) 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 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 technology 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. 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 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.

CE: Original research: the use of surveillance technology in residential facilities for people with dementia or intellectual disabilities: a study among nurses and support staff.

BackgroundThe 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. ObjectiveTo 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 of this technology in practice. MethodsAn ethnographic field study was carried out in two residential care facilities: a nursing home for people with dementia and a facility for people with intellectual disabilities. Data were collected through field observations and informal conversations as well as through formal interviews. ResultsFive 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. ConclusionsA more nuanced view of the benefits and drawbacks of surveillance technology is called for. Study participants 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 digital enhanced cordless telecommunications 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; participants 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 well-formulated vision for the use of surveillance technology—one understood and supported by all stakeholders—seems imperative to successful implementation.

The legal position of vulnerable people in the future: improving or going backwards?

Two vulnerable groups in our society are children with psychiatric problems and people with intellectual disabilities. The demand for care is growing every year in both groups. The current (Dutch) legal status of people with intellectual disabilities and children with psychiatric problems is one in which too much attention is devoted to the right to self-determination. An important question is whether this central feature is enough to support clients in both groups in such a way that they can develop their abilities. The Dutch government is currently preparing new legislation to replace the Psychiatric Hospitals Act. We recommend that this legislation should also take account of the right to development and the right to good care in order to deal with the dilemmas that will arise in the near future.

Reporting of use of coercive measures from a Dutch perspective

Purpose The purpose of this paper is to advance a number of outlooks on the reporting of the use of coercive measures in the care for persons with intellectual disabilities. The following questions will be discussed: which forms of involuntary care should be externally reported and how is this external reporting influenced by environmental and other factors? Design/methodology/approach This paper describes an important part of the New Dutch Care and Coercion Act (Wet zorg en dwang) concerning reporting the use of coercive measures. The implications of reporting the use of coercive measures have been discussed at a meeting for experts in mental health law and the care of people with an intellectual disability. The issue has been presented to the participants as neutrally as possible, so as to provide the researchers a comprehensive picture of the different views on reporting the use of coercive measures. The outcome of this meeting has served as the input for a further step in the research – using the Delphi method – in order to address the issue comprehensively. Findings The Dutch legislation on reporting involuntary care implies that measures carried out only in the face of resistance should be externally reported. The experts that participated in this study endorse the importance of a real-time external reporting system. They believe that standardized and reliable external reporting requires involuntary care, the categories of involuntary care and the environmental and other factors that affect external reporting to be defined more concretely. They regard environmental and other factors as decisive for assessing whether a measure constitutes involuntary care. This in turn, therefore, has consequences for whether such incidents should be reported. Research limitations/implications Many concepts in the new Dutch Care and Coercion Act (Wet zorg en dwang) are not formally defined. Instead, the legislator has left it to those in the field to decide how they should be interpreted. This prompted many questions from those attending the expert meeting and in our own analysis. The researchers could possibly have resolved this confusion during the meeting by formulating more detailed definitions of terms such as “resistance” and “involuntary care” beforehand. The disadvantage of this, however, would have been that those attending the meeting would have had no opportunity to define the terms on the basis of their own expertise. As a result, the researchers have obtained all relevant information comprehensively to use as the input for the next step of the research, which employs the Delphi method. Practical implications This viewpoint emphasises the need to take a wide range of factors into account throughout the process in order to establish whether care can be seen as involuntary. The researchers regard the care providers’ expertise in dealing with these factors – client factors, and behavioural or environmental factors, for example – as being of essential importance if care is to be recognised as involuntary and reported as effectively as possible. Therefore, the researchers discuss whether the legal position of clients is protected if care providers register only those forms of involuntary care where there is obvious resistance. In this case, many forms of resistance are overlooked, which may be to the detriment of the legal protection of clients with intellectual disabilities. However, the system in the UK shows that it can be quite complicated to develop a clear definition of involuntary care that is usable in practice, without giving rise to an enormous amount of bureaucracy and thus distracting from the real issue: protecting the legal position of clients with an intellectual disability. Originality/value Academic papers clearly demonstrate that external reporting of involuntary care has not yet become properly established, either in the Netherlands or elsewhere, such as in the UK. This paper seeks to provide insights into new Dutch legislation about external reporting of involuntary care. By organising a meeting with experts, the factors that have so far acted as obstacles in the reporting of involuntary care are problematized. The findings of this paper will help to further the process of developing an effective system for reporting involuntary care.

The rights of people with an intellectual disability in The Netherlands: from restriction to development.

The purpose of this article is to discuss whether the right to self-determination is the only and the best principle in health law for care providers to support their clients with an intellectual disability, or whether other principles such as the right to development, the right to good care and the right to protection might lead to a better protection of the rights of clients in this field of care. The right to self-determination is the central principle in the Dutch Psychiatric Hospitals (Compulsory Admissions) Act, which at times seems less than beneficial to the legal position of persons with an intellectual disability. The question is whether a new (alternative) legal framework, in which the focus shifts to the right to good care and the right to development, might improve the legal position of people with an intellectual disability.

Restraint interventions in people with moderate to profound intellectual disabilities: Perspectives of support staff and family members

Abstract Background Due to incompatibilities in communication, it is key that family members and support staff can take the perspective of people with moderate to profound intellectual disabilities (ID) whilst putting aside their own perspectives. Method Ten vignettes describing types of restraint interventions (RIs) were presented to 20 unique pairs of support staff and family members related to individuals with moderate to profound ID. Results In taking their own perspective, more than half of the support staff and family members perceived all RIs as involuntary and severe. In contrast, when asked to put themselves in the position of the client/family member, only three RIs were considered involuntary by a majority of support staff and family members. Conclusions These results indicate that support staff and family members can take into account the perspective of people with moderate to profound ID in the evaluation and consideration of involuntary care.

Involuntary care – capturing the experience of people with dementia in nursing homes: A concept mapping study

ABSTRACT Objective: To avoid restraints and involuntary care caregivers should be aware if and how a patient resists care. This article focuses on behavioural expressions of people with severe dementia in nursing homes that are interpreted by their formal and informal caregivers as possible expressions of their experience of involuntary care. Method: Concept mapping was used, following five steps: (1) brainstorming, (2) rating, (3) sorting, (4) statistical analysis & visual representation and (5) interpretation. Specialists (n = 12), nurses (n = 23) and relatives (n = 13) participated in separate groups . Results: The views generated are grouped into clusters of behaviour, presented in graphic charts for each of the respondent groups. The large variety of behavioural symptoms includes, in all groups, not only the more obvious and direct behavioural expressions like aggression, resistance and agitation, but also more subtle behaviour such as sorrow, general discomfort or discontent. Conclusion(s): In the interpretation of behavioural symptoms of people with severe dementia it is important to take into account the possibility of that person experiencing involuntary care. Increased awareness and understanding of the meaning and consequences of the behavioural expressions is an important step in improving dementia care by avoiding restraints and involuntary care to its maximum.