Ethical Issues for User Involvement in Technological Research Projects

2015 ◽  
pp. 251-269 ◽  
Author(s):  
Ainara Garzo ◽  
Nestor Garay-Vitoria
Keyword(s):  
Quality Of Life ◽  
New Technologies ◽  
Ethical Issues ◽  
User Involvement ◽  
Personal Data ◽  
Research Projects ◽  
Technological Research ◽  
European Legislation ◽  
Human Participants

In recent years, it has become common for users to participate in the development of new technologies for health and quality of life. This development requires ethical issues to be taken into account. In this chapter, the researchers review the important recommendations and directives both worldwide and in European legislation in order to guide technological researchers. All research with human participants that poses any risk to them must be supervised by an external multidisciplinary entity. In addition, the participants must decide whether or not they want to participate, having been provided with all the information about the experiments and the risks of taking part. The privacy of the participants' personal data is another important issue.

Experience in the use of double broncholytic therapy in occupational practice

2019 ◽  
pp. 303-307
Author(s):  
Elena A. Beigel ◽  
Natalya G. Kuptsova ◽  
Elena V. Katamanova ◽  
Oksana V. Ushakova ◽  
Oleg L. Lakhman
Keyword(s):  
Quality Of Life ◽  
Personal Data ◽  
The Body ◽  
Step Test ◽  
Aluminum Production ◽  
Chronic Obstructive ◽  
Body Plethysmography ◽  
Occupational Copd ◽  
The Impact

Introduction. Occupational chronic obstructive pulmonary disease (COPD) is one of the leading nosological forms of occupational respiratory disease. Numerous studies have shown high effectiveness of the combination of indacaterol/glycopyrronium (Ultibro®breezhaler®) on the impact on clinical and functional indicators in the treatment of COPD in General practice.The aim of the investigation the case of occupational COPD with the analysis of the dynamics of functional indicators, tolerance to physical load and evaluation of the quality of life of workers engaged in aluminum production by using combination of indacaterol/glycopyrronium.Materials and methods. The random sampling method included 20 men, workers of aluminum production, with the established diagnosis of professional COPD at the age of 40 to 60 years. The survey was conducted (Borg scale, medical Research Council scale (mMRC) and COPD Assessment Test (CAT). Functional methods of studies were conducted: spirometry, body plethysmography, electrocardiography (ECG) and the six-minute stepper test (6-MST).Results. Against the background of 8 weeks of therapy, the volume of forced exhalation for 1 minute (FEV1) increased by 14.7% and amounted to 67.90% of the due values, the forced vital capacity of the lungs (FVC) increased by 11.3% and amounted to 76.95% of the due. According to the body plethysmography (BPG) is set to decrease in residual lung volume on average by 13.4% and static hyperinflation, confirmed by the decrease in functional residual volume (FRV) of 18.8%. During the study period increased physical activity of patients. The average difference between the distance traveled in the six-minute step test before and after treatment was 58.8 m. The analysis of personal data showed that the quality of life of patients improved, the total score in the questionnaire CAT at the beginning of the study was 16.9 points, and after 8 weeks decreased by 63% and amounted to 10.7 points.Conclusions: The Results indicate a positive effect of combination therapy with indacaterol/glycopyrronium on the course and progression of occupational COPD.

Effectiveness of Teleassistance at Improving Quality of Life in People with Neuromuscular Diseases

2014 ◽  
Vol 17 ◽  
Author(s):  
Oscar Martínez ◽  
Amaia Jometón ◽  
Manuel Pérez ◽  
Esther Lázaro ◽  
Imanol Amayra ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Interaction ◽  
New Technologies ◽  
Neuromuscular Diseases ◽  
Control Group ◽  
Related Quality ◽  
Health Related ◽  
Low Prevalence ◽  
Psychosocial Domain

AbstractRare neuromuscular diseases (NDs) are a group of inherited or acquired neurological pathologies affecting the muscles and the nervous system. Their low prevalence and high geographical dispersion can cause isolation and difficulties in social interaction between affected equals. New technologies, such as videoconferencing, offer a complementary option for improving the health of this population. The purpose of this study was to assess the effectiveness of a teleassistance program at improving health-related quality of life (HRQoL) through social interaction in adults with NDs. The sample consisted of 45 participants affected by rare NDs. Twenty-four participants were assigned to the experimental group (EG), which participated in the videoconferencing sessions, and 21 to the control group. Three questionnaires were administered: WHO-DAS II, Sickness Impact Profile, and SF-36 Health Survey. Effectiveness was assessed by a pre-post design. An online psychosocial program was applied over three-month period. Data revealed an improvement of the EG in psychosocial variables, e.g. “Getting along with people” (z = –2.289, r = –.47, p ≤ .05) or “Psychosocial Domain” (z = –2.404, r = –.49, p ≤ .05), and in physical variables, e.g. “Life activities” (z = –2.844, r = –.58, p ≤ .05). Social interaction appeared as a relevant factor at improving HRQoL levels. High levels of satisfaction about the teleassistance program were reported.

scholarly journals JOURNEY THROUGH “FIELDS” OF AGEING - FROM “WORLD OF ELDERS” TO “WORLDS OF SENIORS”

2016 ◽  
Vol 1 (2) ◽  
pp. 123
Author(s):  
Orazio Licciardello ◽  
Manuel Mauceri ◽  
Graziella Di Marco ◽  
Maria Giuseppina Cardella
Keyword(s):  
Quality Of Life ◽  
University Students ◽  
Self Efficacy ◽  
New Technologies ◽  
Social Representations ◽  
The Elderly ◽  
Point Of View ◽  
Active Ageing ◽  
Digital Skills

Abstract.We conducted some researches in order to explore “fields” or dimensions of elderly people’s Quality of Life (QoL), both as self-perception and hetero-perception. A set of researches were conducted in Italy and Spain, involving seniors and university students. The aim was to explore the seniors’ QoL from both their and the students’ point of view. Results showed elderly people perceived their own life better than the “other” attributed to them; they were quite good at managing Positive and Negative Emotions. Spanish university students represented more positively the elderly people’s QoL than Italian colleagues. A Positive Affect as well as an empathic attitude towards seniors affected a better representation about elderly people’s QoL. Another set of studies was focused on the elderly people’s QoL and New Technologies (NTs) as these may offer opportunities both to maintain an independent lifestyle and to being involved in relevant activities. Most participants had nor any digital skills neither prejudices on the NTs; the perceived QoL was quite positive; Self-Efficacy believes were really high. The QoL was affected only by Self-Efficacy. A workshop was held, involving a small group of both disabled and healthy seniors; it was focused on the NTs, as tools to promote an active citizenship. After Training our seniors improved their Digital Skills and their own Quality of Life. In the end, a study was conducted in order to verify how both empathy (Empatic Concern; Perspective Taking), Theory on Mind (RMET) and contact worked well to improve QoL levels attributed to elders by a group of university students. On an applicative plan, empathy and TOM should represent the backdrop in supervised experiences of contact between students and elders. Further research will be conduct on this path.Key-Words: Active ageing; Quality of Life; Social Representations; Contact; Empathy.

Remote monitoring of vital and activity parameters in chronic transfusion dependent patients: a case-crossover pilot using wearable biosensors (Preprint)

2021 ◽  
Author(s):  
Rik Tonino ◽  
Mackenzie Tweardy ◽  
Jaap Jan Zwaginga ◽  
Stephan Wegerich ◽  
Martin Roelof Schipperus
Keyword(s):  
Quality Of Life ◽  
Heart Rate ◽  
New Technologies ◽  
Standard Of Care ◽  
Red Cell ◽  
Web Based ◽  
Actual Performance ◽  
Red Cell Transfusion ◽  
Induced Changes

BACKGROUND Little is known if and to what extent outpatient RBC transfusions benefit chronic transfusion dependent patients. Costs, labour, and small but remaining side effects of RBC transfusions cause restrictive transfusions strategy to be the standard of care. However, the actual performance and quality of life of patients who require RBC’s on a regular basis are hardly accounted for. OBJECTIVE The aim of this study is to understand how new technologies and techniques like wearable biosensor devices and web-based testing can be used to measure physiological changes and functional activity in a cohort of transfusion-dependent patients. METHODS We monitored 5 patients who regularly receive transfusions during one transfusion cycle with the VitalPatch biosensor, the Withings Steel HR, and web-based cognitive and quality of life testing. RESULTS The deployed devices rendered qualitative and usable data. Heart rate and cognition showed to be significantly improved by RBC transfusions. Activity and quality of life measures did not show transfusion-induced changes. CONCLUSIONS The accelerateIQ platform, Withings Steel HR, and the CANTAB platform are usable for extracting and analysing data. Red cell transfusions significantly and reversibly decrease heart rate and increase sustained attention in our cohort of five red cell transfusion-dependent patients.

On the Use of Speech Technologies to Achieve Inclusive Education for People with Intellectual Disabilities

2013 ◽  
pp. 163-174
Author(s):  
Ana Pérez Pérez ◽  
Zoraida Callejas Carrión ◽  
Ramón López-Cózar Delgado ◽  
David Griol Barres
Keyword(s):  
Quality Of Life ◽  
Intellectual Disabilities ◽  
Inclusive Education ◽  
New Technologies ◽  
Language Disorders ◽  
The Social ◽  
Educational Integration ◽  
People With Intellectual Disabilities ◽  
Speech And Language Disorders

New technologies have demonstrated a great potential to improve the social, labour, and educational integration of people with special needs. That is why there is a special interest of academia and industry to develop tools to assist this people, improving their autonomy and quality of life. Usually, intellectual disabilities are linked with speech and language disorders. In this chapter, the authors present a review on the efforts directed towards designing and developing speech technologies adapted to people with intellectual disabilities. Also, they describe the work they have conducted to study how to gather speech resources, which can be used to build speech-based systems that help them to communicate more effectively.

Exploring Personal Healthcare with the Help of Two Large European Framework Programs for Healthcare

2010 ◽  
pp. 918-938
Author(s):  
Harald Reiter ◽  
Joerg Habetha
Keyword(s):  
Chronic Diseases ◽  
New Technologies ◽  
Wearable Sensors ◽  
Ease Of Use ◽  
The Self ◽  
Self Management ◽  
European Research ◽  
Research Projects ◽  
Personal Healthcare

Personal healthcare enables prevention and early diagnosis in daily life and is centered on the patient. There is a need for a new personal healthcare paradigm in the treatment of chronic diseases. This will be achieved by new technologies that are currently explored (e.g., in European Research projects such as MyHeart and HeartCycle). These projects develop technologies and application concepts for the (self-)management of chronic diseases in patients’ homes with special emphasis on usability and ease-of-use (e.g., wearable sensors and processing units that can even be integrated into the patient’s clothes). These technologies allow empowering patients, fostering self-management and therefore reducing cost, and improving patients’ quality of life.

Management of dementia

2020 ◽  
pp. 557-570
Author(s):  
Sarah Cullum ◽  
Tesema Taye
Keyword(s):  
Quality Of Life ◽  
Social Care ◽  
Ethical Issues ◽  
Family Members ◽  
Dementia Care ◽  
Psychosocial Aspects ◽  
People With Dementia

The cornerstone of dementia care is social care, and much of this is delivered by the families and carers of people with dementia. The management of dementia should therefore focus on supporting and developing the care provided by family members and carers in the community, because their education and enablement will help to optimize the quality of life for all people living with dementia. This chapter concentrates on the assessment and management of people with dementia in the early and later stages of the disorder. At both stages we consider engagement, autonomy, respect, protection, and ethical issues, as well as describing the clinical and psychosocial aspects of treatment. The emphasis is on the broader principles of management, which apply to people with dementia of any aetiology, their families, carers, and communities, and take into account the different settings in which they may present.

scholarly journals Smart Homes: Steps, Components, Utilities and Challenges

2018 ◽  
Vol 7 (2.7) ◽  
pp. 436
Author(s):  
Velivela Gopinath ◽  
Arigela Srija ◽  
Dr S Krishna Rao ◽  
Avula Madhuri
Keyword(s):  
20Th Century ◽  
Smart Home ◽  
New Technologies ◽  
Smart Homes ◽  
Research Projects ◽  
Home Networking ◽  
Intelligent Home ◽  
Home Technology ◽  
Smart Home Technology

Smart Home is a flourishing technology of 20th century. It integrates of many new technologies through home networking for improving quality of human’s life. Intelligent Home trade has drawn goodish attention of researchers for quite a decade. Smart Home technology is a combination of network and services and much more consequently, this paper focuses on various topics in smart home technologies from surveying for smart home research projects and presents a survey of all such systems and covers advantages of smart home systems, smart steps and simple components to install smart homes. So, the presented paper can be cookbook of ideas for who ever want to learn this blossoming technology.  

Amyotrophic Lateral Sclerosis

2018 ◽  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Health Care Professionals ◽  
New Technologies ◽  
Neurodegenerative Disorder ◽  
Well Being ◽  
Psychological Well Being ◽  
The Impact ◽  
Lateral Sclerosis

Amyotrophic lateral sclerosis: Understanding and optimizing quality of life and psychological well-being presents a comprehensive and up-to-date review of the enhancement of the lives of people with amyotrophic lateral sclerosis (ALS) and their caregivers. ALS is a progressive, fatal neurodegenerative disorder. No current medical therapy can reverse or stop its progression, and the promotion of quality of life and psychological well-being is a central component of ALS care. Health care professionals who work in this field should incorporate attention to psychological, emotional, and relational aspects of the disease into their approach to care. This book provides some of the knowledge and direction necessary for optimizing the quality of care for individuals with ALS and their caregivers. Topics discussed include an ALS-centred view of quality of life, depressive features, anxiety, resilience, cognitive impairment, complementary and alternative medicines, and psychological research. Specific elements of ALS, such as end-of-life concerns and bulbar dysfunction, are described through the lens of their psychological impact. There is extensive discussion of the development of new psychological treatments, as well as the impact and incorporation of new technologies, with the goal of fostering optimal quality of life and psychological well-being as key parts of a holistic approach to care for the patients and for those who are close to such individuals.

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