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      Views of Caregivers on the Ethics of Assistive Technology Used for Home Surveillance of People Living with Dementia

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          Abstract

          This paper examines the ethics of using assistive technology such as video surveillance in the homes of people living with dementia. Ideation and concept elaboration around the introduction of a camera-based surveillance service in the homes of people with dementia, typically living alone, is explored. The paper reviews relevant literature on surveillance of people living with dementia, and summarises the findings from ideation and concept elaboration workshops, designed to capture the views of those involved in the care of people living with dementia at home. The research question relates to the ethical considerations of using assistive technologies that include video surveillance in the homes of people living with dementia, and the implications for a person living with dementia whenever video surveillance is used in their home and access to the camera is given to the person’s family. The review of related work indicated that such video surveillance may result in loss of autonomy or freedom for the person with dementia. The workshops reflected the findings from the related work, and revealed useful information to inform the service design, in particular in fine-tuning the service to find the best relationship between privacy and usefulness. Those who took part in the workshops supported the concept of the use of camera in the homes of people living with dementia, with some significant caveats around privacy. The research carried out in this work is small in scale but points towards an acceptance by many caregivers of people living with dementia of surveillance technologies. This paper indicates that those who care for people living with dementia at home are willing to make use of camera technology and therefore the value of this work is to help shed light on the direction for future research.

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          Existing empirical literature on the prolonged or cumulative consequences of exposure to the stresses of caregiving is reviewed. Specific goals are to identify psychiatric and physical morbidity effects, report the magnitude of those effects, evaluate research and analytic methods used to assess morbidity, and make recommendations for future research. Overall, the literature indicates increases in self-report psychiatric symptomatology and increases in psychiatric illness among most caregivers when compared to population norms or appropriate control groups. However, there is little information on the population prevalence or incidence of clinically significant psychiatric conditions attributable to caregiving. Studies of physical health effects as assessed by self-report, health care utilization, and immune function are less conclusive but, nevertheless, suggest increased vulnerability to physical illness among caregivers. We conclude with a discussion of why morbidity effects are difficult to obtain in caregiver studies and with recommendations for future research.
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            Cost effectiveness of telehealth for patients with long term conditions (Whole Systems Demonstrator telehealth questionnaire study): nested economic evaluation in a pragmatic, cluster randomised controlled trial.

            To examine the costs and cost effectiveness of telehealth in addition to standard support and treatment, compared with standard support and treatment. Economic evaluation nested in a pragmatic, cluster randomised controlled trial. Community based telehealth intervention in three local authority areas in England. 3230 people with a long term condition (heart failure, chronic obstructive pulmonary disease, or diabetes) were recruited into the Whole Systems Demonstrator telehealth trial between May 2008 and December 2009. Of participants taking part in the Whole Systems Demonstrator telehealth questionnaire study examining acceptability, effectiveness, and cost effectiveness, 845 were randomised to telehealth and 728 to usual care. Intervention participants received a package of telehealth equipment and monitoring services for 12 months, in addition to the standard health and social care services available in their area. Controls received usual health and social care. Primary outcome for the cost effectiveness analysis was incremental cost per quality adjusted life year (QALY) gained. We undertook net benefit analyses of costs and outcomes for 965 patients (534 receiving telehealth; 431 usual care). The adjusted mean difference in QALY gain between groups at 12 months was 0.012. Total health and social care costs (including direct costs of the intervention) for the three months before 12 month interview were £1390 (€1610; $2150) and £1596 for the usual care and telehealth groups, respectively. Cost effectiveness acceptability curves were generated to examine decision uncertainty in the analysis surrounding the value of the cost effectiveness threshold. The incremental cost per QALY of telehealth when added to usual care was £92 000. With this amount, the probability of cost effectiveness was low (11% at willingness to pay threshold of £30 000; >50% only if the threshold exceeded about £90 000). In sensitivity analyses, telehealth costs remained slightly (non-significantly) higher than usual care costs, even after assuming that equipment prices fell by 80% or telehealth services operated at maximum capacity. However, the most optimistic scenario (combining reduced equipment prices with maximum operating capacity) eliminated this group difference (cost effectiveness ratio £12 000 per QALY). The QALY gain by patients using telehealth in addition to usual care was similar to that by patients receiving usual care only, and total costs associated with the telehealth intervention were higher. Telehealth does not seem to be a cost effective addition to standard support and treatment. ISRCTN43002091.
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              Medical ethics: four principles plus attention to scope.

              R Gillon (1994)
              The "four principles plus scope" approach provides a simple, accessible, and culturally neutral approach to thinking about ethical issues in health care. The approach, developed in the United States, is based on four common, basic prima facie moral commitments--respect for autonomy, beneficence, nonmaleficence, and justice--plus concern for their scope of application. It offers a common, basic moral analytical framework and a common, basic moral language. Although they do not provide ordered rules, these principles can help doctors and other health care workers to make decisions when reflecting on moral issues that arise at work.
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                Author and article information

                Contributors
                +44 2890 368602 , md.mulvenna@ulster.ac.uk
                a.hutton@ulster.ac.uk
                ve.coates@ulster.ac.uk
                S.Martin@ulster.ac.uk
                Stephen.Todd@westerntrust.hscni.net
                rb.bond@ulster.ac.uk
                a.moorhead@ulster.ac.uk
                Journal
                Neuroethics
                Neuroethics
                Neuroethics
                Springer Netherlands (Dordrecht )
                1874-5490
                1874-5504
                24 January 2017
                24 January 2017
                2017
                : 10
                : 2
                : 255-266
                Affiliations
                [1 ]ISNI 0000000105519715, GRID grid.12641.30, School of Computing and Mathematics, , Ulster University, ; Newtownabbey, UK
                [2 ]ISNI 0000000105519715, GRID grid.12641.30, School of Creative Arts and Technologies, , Ulster University, ; Newtownabbey, UK
                [3 ]ISNI 0000000105519715, GRID grid.12641.30, School of Nursing, , Ulster University, ; Newtownabbey, UK
                [4 ]ISNI 0000000105519715, GRID grid.12641.30, School of Health Science, , Ulster University, ; Newtownabbey, UK
                [5 ]ISNI 0000 0004 0389 7458, GRID grid.413639.a, Western Health and Social Care Trust, , Altnagelvin Hospital, ; Londonderry, UK
                [6 ]ISNI 0000000105519715, GRID grid.12641.30, School of Communication, , Ulster University, ; Newtownabbey, UK
                Author information
                http://orcid.org/0000-0002-1554-0785
                Article
                9305
                10.1007/s12152-017-9305-z
                5486509
                28725288
                a5828674-faa9-493a-8698-a5131d8d65cc
                © The Author(s) 2017

                Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                History
                : 14 December 2016
                : 16 January 2017
                Funding
                Funded by: University of Ulster
                Categories
                Original Paper
                Custom metadata
                © Springer Science+Business Media B.V. 2017

                Ethics
                independent living,autonomy,assistive technology,ethics,dementia,alzheimer’s disease,cameras,video,surveillance

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