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Moral distress and ethical decision-making of eldercare professionals involved in digital service transformation

FRENNERT, Susanne
2020

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Aim

Technology affects almost all aspects of modern eldercare. Ensuring ethical decision-making is essential as eldercare becomes more digital; each decision affects a patient’s life, self-esteem, health and wellness.

 

Methods

We conducted a survey and interviews with eldercare professionals to better understand the behavioural ethics and decision making involved in the digital transition of eldercare.

 

Conclusion

Our qualitative analysis showed three recurrent roles among eldercare professionals in regard to digital service transformation; makers, implementers and maintainers. All three encountered challenging and stressful ethical dilemmas due to uncertainty and a lack of control. The matter of power relations, the attempts to standardize digital solutions and the conflict between cost efficiency and if digital care solutions add value for patients, all caused moral dilemmas for eldercare professionals. The findings suggest a need for organizational infrastructure that promotes ethical conduct and behaviour, ethics training and access to related resources.

Kinect4FOG: monitoring and improving mobility in people with Parkinson’s using a novel system incorporating the Microsoft Kinect v2

AMINI, Amin
BANITSAS, Konstantinos
YOUNG, William R
2018

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Parkinson’s is a neurodegenerative condition associated with several motor symptoms including tremors and slowness of movement. Freezing of gait (FOG); the sensation of one’s feet being “glued” to the floor, is one of the most debilitating symptoms associated with advanced Parkinson’s. FOG not only contributes to falls and related injuries, but also compromises quality of life as people often avoid engaging in functional daily activities both inside and outside the home. In the current study, we describe a novel system designed to detect FOG and falling in people with Parkinson’s (PwP) as well as monitoring and improving their mobility using laser-based visual cues cast by an automated laser system. The system utilizes a RGB-D sensor based on Microsoft Kinect v2 and a laser casting system consisting of two servo motors and an Arduino microcontroller. This system was evaluated by 15 PwP with FOG. Here, we present details of the system along with a summary of feedback provided by PwP. Despite limitations regarding its outdoor use, feedback was very positive in terms of domestic usability and convenience, where 12/15 PwP showed interest in installing and using the system at their homes.

A world without Down’s syndrome? Online resistance on Twitter: #worldwithoutdowns and #justaboutcoping

BURCH, Leah
2017

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Presented by actress and comedian Sally Phillips, A World Without Down’s Syndrome has brought important ethical debates regarding prenatal screening into the public domain. By talking to people with Down’s syndrome, family members, and professionals, Sally has presented a nuanced and thorough examination of the type of world we are living in. Following the documentary, Twitter users have continued to engage with debates and have created a resilient platform for challenging public attitudes. This paper explores the ways in which Twitter hashtags have provided a space for such important and long overdue conversations. While it would not be possible to provide a full overview of the topical conversations that the two hashtags have provoked, I aim to focus on some of the most prominent topics. The following, then, will explore the potential of alternative narratives that resist, and disrupt, normative notions of the human using the hashtags #worldwithoutdowns and #justaboutcoping.

Project Re•Vision: disability at the edges of representation

RICE, Carla
CHANDLER, Eliza
HARRISON, Elisabeth
LIDDIARD, Kirsty
FERRARI, Manuela
2015

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The representational history of disabled people can largely be characterized as one of being put on display or hidden away. Self-representations have been a powerful part of the disability rights and culture movement, but recently scholars have analysed the ways in which these run the risk of creating a ‘single story’that centres the experiences of white, western, physically disabled men. Here we introduce and theorize with Project Re•Vision, our arts-based research project that resists this singularity by creating and centring, without normalizing, repre- sentations that have previously been relegated to the margins. We draw from body becoming and new materialist theory to explore the dynamic ways in which positionality illuminates bodies of difference and open into a discussion about what is at stake when these stories are let loose into the world.

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