What do cognitively intact older people think about the use of electronic tracking devices for people with dementia? A preliminary analysis

Landau, Ruth; Werner, Shirli; Auslander, Gail K.; Shoval, Noam; Heinik, Jeremia

doi:10.1017/s1041610210001316

Cited by 35 publications

(25 citation statements)

References 28 publications

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“…This type of 'tradeoff' highlights the potential for H-IoT to simultaneously violate and enhance privacy. A tradeoff has been observed between personal privacy and safety, particularly among the mentally impaired patients (Ojasalo et al 2010;Stowe and Harding 2010;Landau et al 2010), as well as frail elderly (Melenhorst et al 2004;Courtney 2008;Courtney et al 2008;Steele et al 2009), and chronically ill persons (Salih et al 2011;Neild et al 2004). In these contexts, it has been stressed that personal privacy can be both protected by eliminating the need for in-person care (Ojasalo et al 2010;Essén 2008) and violated by the presence of a monitoring device (Melenhorst et al 2004;Steele et al 2009;Salih et al 2011).…”

Section: Personal Privacymentioning

confidence: 99%

“…The related concept of visibility refers to the degree to which a H-IoT device is noticeable to the user and others, both at home and in public (Robinson et al 2007;Landau et al 2010;Essén 2008;van Hoof et al 2011). Visibility is not equivalent to obtrusiveness.…”

Section: Obtrusiveness Stigma and Autonomymentioning

confidence: 99%

“…It describes aesthetic aspects of a device, and their impact on the perceptions of users and others. Characteristics affecting visibility included ease of use, size and weight (Landau et al 2010). …”

Section: Obtrusiveness Stigma and Autonomymentioning

confidence: 99%

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Ethics of the health-related internet of things: a narrative review

Mittelstadt

2017

Ethics Inf Technol

105

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Section: Personal Privacymentioning

confidence: 99%

Section: Obtrusiveness Stigma and Autonomymentioning

confidence: 99%

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Ethics of the health-related internet of things: a narrative review

Mittelstadt

2017

Ethics Inf Technol

105

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“…Benefits to user safety are often the basis for adoption. However, safety interests can act as a constraint on autonomy, insofar as a "need" for H-IoT is perceived from the user that leads to adopting a device or service that would otherwise not be used [21,22]. Autonomy is constrained insofar as the patient experiences (both internally and externally imposed) pressure to use H-IoT.…”

Section: Respect Autonomy and Avoid Subtle Nudging Of User Behaviourmentioning

confidence: 99%

Designing the Health-related Internet of Things: Ethical Principles and Guidelines

Mittelstadt

2017

Information

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Abstract:The conjunction of wireless computing, ubiquitous Internet access, and the miniaturisation of sensors have opened the door for technological applications that can monitor health and well-being outside of formal healthcare systems. The health-related Internet of Things (H-IoT) increasingly plays a key role in health management by providing real-time tele-monitoring of patients, testing of treatments, actuation of medical devices, and fitness and well-being monitoring. Given its numerous applications and proposed benefits, adoption by medical and social care institutions and consumers may be rapid. However, a host of ethical concerns are also raised that must be addressed. The inherent sensitivity of health-related data being generated and latent risks of Internet-enabled devices pose serious challenges. Users, already in a vulnerable position as patients, face a seemingly impossible task to retain control over their data due to the scale, scope and complexity of systems that create, aggregate, and analyse personal health data. In response, the H-IoT must be designed to be technologically robust and scientifically reliable, while also remaining ethically responsible, trustworthy, and respectful of user rights and interests. To assist developers of the H-IoT, this paper describes nine principles and nine guidelines for ethical design of H-IoT devices and data protocols.

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“…Benefits like increased independence and a greater feeling of wellbeing are described leading to an improved quality of life brought about by the use of assistive digital devices [2,13,14].…”

Section: Introductionmentioning

confidence: 99%

Professional caregivers’ perceptions on the prerequisites for and consequences of people with mild dementia using a digital photo diary

Harrefors¹,

Axelsson²,

Lundquist³

et al. 2013

OJN

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Research is currently ongoing to investigate the use of assistive technology by people with mild dementia to support independent living at home. The aim of this study was to describe professional caregivers' perceptions on the prerequisites for and consequences of people with mild dementia using a digital photo diary to facilitate their talks about daily events with their family members. A questionnaire was sent out to 582 participants (response rate 70.1%) to elucidate the professional caregivers' perceptions on the use of the digital photo diary. The questionnaire contained both quantitative and qualitative data and was analyzed with descriptive statistics, factor analysis, multivariate analysis of covariance and qualitative content analysis. This study reports the results related to prerequisites and consequences of using the photo diary. The results from the factor analysis revealed four factors: Trust, Vulnerability, Dependency/Independency and Control. The qualitative content analysis resulted in five categories: Immediate implementation after receiving a diagnose is required, Relatives' participation is a necessity, Strengthened self-esteem and meaningful everyday life, Increased alienation and a feeling of isolation and Assistive digital devices provide opportunities. The theme was interpreted as: Personalization and the preservation of dignity. The conclusion that can be drawn from this study is that the participants had an overall positive view of the usage of this specific digital photo diary for people suffering from dementia, but rigorous considerations needs before implementation of the device and regularly follow ups if dignity is to be maintained for people with dementia.

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What do cognitively intact older people think about the use of electronic tracking devices for people with dementia? A preliminary analysis

Abstract: Cognitively intact older people favor the idea of tracking people with dementia. To facilitate family decision-making on the use of tracking devices, structured meetings guided by professionals and including persons with dementia and their family caregivers are suggested.

Cited by 35 publications

References 28 publications

Ethics of the health-related internet of things: a narrative review

Ethics of the health-related internet of things: a narrative review

Designing the Health-related Internet of Things: Ethical Principles and Guidelines

Professional caregivers’ perceptions on the prerequisites for and consequences of people with mild dementia using a digital photo diary

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