scholarly journals Locked Out

2017 ◽  
Vol 26 (4) ◽  
pp. 555-576 ◽  
Author(s):  
VERONICA JOHANSSON ◽  
SURJO R. SOEKADAR ◽  
JENS CLAUSEN
Keyword(s):  
Quality Of Life ◽  
Moral Responsibility ◽  
Medical Condition ◽  
Persons With Disabilities ◽  
Social Barriers ◽  
Computer Interfaces ◽  
Novel Approach ◽  
Viable Solution ◽  
Key Issues

Abstract:Brain–computer interfaces (BCIs) can enable communication for persons in severe paralysis including locked-in syndrome (LIS); that is, being unable to move or speak while aware. In cases of complete loss of muscle control, termed “complete locked-in syndrome,” a BCI may be the only viable solution to restore communication. However, a widespread ignorance regarding quality of life in LIS, current BCIs, and their potential as an assistive technology for persons in LIS, needlessly causes a harmful situation for this cohort. In addition to their medical condition, these persons also face social barriers often perceived as more impairing than their physical condition. Through social exclusion, stigmatization, and frequently being underestimated in their abilities, these persons are being locked out in addition to being locked-in. In this article, we (1) show how persons in LIS are being locked out, including how key issues addressed in the existing literature on ethics, LIS, and BCIs for communication, such as autonomy, quality of life, and advance directives, may reinforce these confinements; (2) show how these practices violate the United Nations Convention on the Rights of Persons with Disabilities, and suggest that we have a moral responsibility to prevent and stop this exclusion; and (3) discuss the role of BCIs for communication as one means to this end and suggest that a novel approach to BCI research is necessary to acknowledge the moral responsibility toward the end users and avoid violating the human rights of persons in LIS.

scholarly journals Individual quality of life and the environment – towards a concept of livable areas for persons with disabilities in Poland

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Izabela Grabowska ◽  
Radosław Antczak ◽  
Jan Zwierzchowski ◽  
Tomasz Panek
Keyword(s):  
Quality Of Life ◽  
Environmental Conditions ◽  
Basic Research ◽  
Research Problem ◽  
Individual Characteristics ◽  
Living Conditions ◽  
Special Focus ◽  
Persons With Disabilities ◽  
The Relationship

Abstract Background The United Nations Convention on the Rights of Persons with Disabilities [1] highlights the need to create proper socioeconomic and political conditions for persons with disabilities, with a special focus on their immediate living conditions. According to the Convention, these conditions should be built to ensure that persons with disabilities have the potential to enjoy a high quality of life (QoL), and this principle is reflected in the notion of livable areas. The crucial aspect of this framework is the relationship between the individual QoL and the environment, broadly understood as the socioeconomic as well as the technical conditions in which persons with disabilities function. Methods The basic research problem was to assess the relationship between individual QoL for the population with disabilities as a dependent variable and livability indicators as independent variables, controlling for individual characteristics. The study used a dataset from the EU-SILC (European Union Statistics on Income and Living Conditions) survey carried out in 2015 in Poland. The research concept involved several steps. First, we created a variable measuring the QoL for the entire population with disabilities. To measure the multidimensional QoL, we used Sen’s capability approach as a general concept, which was operationalized by the MIMIC (multiple indicators multiple causes) model. In the second step, we identified the livability indicators available in the official statistics, and merged them with survey data. Finally, in the last step, we ran the regression analysis. We also checked the data for the nested structure. Results We confirmed that the general environmental conditions, focused on creating livable areas, played a significant role in shaping the QoL of persons with disabilities; i.e., we found that the higher the level of the local Human Development Index, the higher the quality of life of the individuals living in this area. This relationship held even after controlling for the demographic characteristics of the respondents. Moreover, we found that in addition to the general environmental conditions, the conditions created especially for persons with disabilities (i.e., services for this group and support for their living conditions) affected the QoL of these individuals. Conclusions The results illustrate the need to strengthen policies aimed at promoting the QoL of persons with disabilities by creating access to community assets and services that can contribute to improving the life chances of this population.

Brain Computer Interfaces for Assisted Communication in Paralysis and Quality of Life

2021 ◽  
Author(s):  
Ujwal Chaudhary ◽  
Bankim Subhash Chander ◽  
Avi Ohry ◽  
Andres Jaramillo-Gonzalez ◽  
Dorothee Lule ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Brain Computer Interfaces ◽  
Computer Interfaces

scholarly journals The current trend of administering a patient-generated index in the oncological setting: a systematic review

2014 ◽  
Author(s):  
Jessica A. Tang ◽  
Taemin Oh ◽  
Justin K. Scheer ◽  
Andrew T. Parsa
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Current Trend ◽  
Free Form ◽  
Patient Generated Index ◽  
Novel Approach ◽  
Patient Reported ◽  
Assess Quality ◽  
In The Beginning

The patient-generated index (PGI) is a more novel approach to evaluating health-related quality of life (HRQOL) that allows patients to formulate their own responses in an open-ended format in order to measure HRQOL based on each patient’s own stated goals and expectations. To date the use of PGI in the setting of patients diagnosed with cancer remains relatively less common compared to other health conditions. This systematic review primarily aims to identify current literature in which PGI has been used as a tool to assess quality of life in cancer patients. A systematic review using the MEDLINE database from January 1990 to July 2013 was performed with the following search terms to identify the implementation of PGI in oncology settings: (PGI OR patient generated index OR patient-generated OR patient-reported OR patient generated OR patient reported) AND (cancer OR oncology OR tumor OR neoplasm OR malignancy). Of the 2167 papers initially identified, 10 papers evaluated quality of life in oncology patients by collecting free-form responses from the patient, 4 of which actually used PGI. An overarching theme observed in these studies highlighted the concerns mentioned by patients that were not targeted or detected by standardized quality of life measures. While implementing the PGI may require slightly more investment of resources in the beginning, the potential implications of allowing patients to characterize their quality of life on their own terms are tremendous.

scholarly journals Conceptualization, operationalization, and content validity of the EQOL-questionnaire measuring quality of life and participation for persons with disabilities

2018 ◽  
Vol 16 (1) ◽  
Author(s):  
Louise Norman Jespersen ◽  
Susan Ishøy Michelsen ◽  
Bjørn Evald Holstein ◽  
Tine Tjørnhøj-Thomsen ◽  
Pernille Due
Keyword(s):  
Quality Of Life ◽  
Content Validity ◽  
Persons With Disabilities

scholarly journals A Novel Approach for the Reimbursement of Permanent Partial Dental Disability Following Dental Injury

2015 ◽  
Vol 16 (6) ◽  
pp. 504-506
Author(s):  
Edgar Nehme ◽  
Sami Jad
Keyword(s):  
Quality Of Life ◽  
Insurance Companies ◽  
Court System ◽  
Permanent Disability ◽  
Dental Injury ◽  
System A ◽  
Novel Approach ◽  
New Formula

ABSTRACT Reimbursement of long-term permanent disability following a dental injury can lead to claims and legal involvement by the injured person. This will delay the treatment the patient's quality of life and the court system. A new formula has been hypothesized to address the problem. This might help the stakeholders including patients, insurance companies. The details of calculating the index and its significance are discussed. Implication studies are mandatory to refine the proposed hypothesis. How to cite this article Ayoub F, Nehme E, Jad S, Salameh Z. A Novel Approach for the Reimbursement of Permanent Partial Dental Disability Following Dental Injury. J Contemp Dent Pract 2015;16(6):504-506.

scholarly journals ‘Quality of Life’ of Persons with Disability: An Assessment in Selected Flood Prone Areas of Bangladesh

2017 ◽  
Vol 1 (1) ◽  
pp. 1-21
Author(s):  
Mir Hasan Shakil Mahmud ◽  
Md. Abul Kalam Azad
Keyword(s):  
Quality Of Life ◽  
Psychological Health ◽  
Quantitative Research ◽  
Structured Interview ◽  
Poor Quality ◽  
Persons With Disabilities ◽  
Prone Area ◽  
Post Disaster ◽  
Flood Prone Areas

The present study is on “Quality of Life” of person with disabilities living in flood prone areas of Bangladesh. In this aspect the specific objectives have been designed to determine the effects of disaster on physical and psychological health and social relationship between disabilities and community. The study has also assessed the adaptive capacity of persons with disabilities during and post-disaster period and find out the challenges faced by the persons with disabilities during disaster and post disaster that undermining their quality of life. In the determination of quality of life of PWDs in the selected flood prone area in Bangladesh a mixed method incorporating both qualitative and quantitative research approaches was used to conduct this study by using the tools of observation, case study, and face to face semi structured interview, with PWDs in Northern district of Gaibandha. The study shows that out of 110 respondent, nearly 63 per cent required assistance, while over 38 per cent respondent are required partial assistance, and 20 percent are required supervision. The study reveals that more than 9 per cent of the respondents maintains very poor quality of life while 20 per cent are maintaining poor quality of life, nearly 34 per cent respondents are identified their life neither poor or nor good in selected area.

scholarly journals Coping Behavior of Persons with Disabilities as a Factor of Quality of Life and Subjective Well-Being

2018 ◽  
Vol 26 (4) ◽  
pp. 101-118 ◽  
Author(s):  
S.A. Khazova ◽  
N. Shipova ◽  
T.N. Adeeva ◽  
I.V. Tikhonova
Keyword(s):  
Quality Of Life ◽  
Coping Strategies ◽  
Coping Behavior ◽  
Well Being ◽  
Separate Analysis ◽  
Subjective Well Being ◽  
High Quality ◽  
Persons With Disabilities ◽  
Rehabilitation Programs

The article presents an analysis of the problem of determining disabled-since-childhood adults’ quality of life. We suggested that coping behavior was a factor of high quality of life and subjective well-being. The sample (N=102) included disabled-since-childhood adults’ (N=51) with visual (N=16), hearing (N=18) and mobility disabilities (N=17) and adults with typical development (N=51). The respondents` average age is 37 years. Methods: the brief questionnaire WHOQOL-BREF in the adaptation of the V.M. Bechterev Research Institute; M.V. Sokolova’s Subjective Well-Being Scale; The Ways of Coping Questionnaire (Folkman, Lazarus, adapted by Kryukova T.L., Kuftyak E.V.). The results indicate a sufficiently high quality of life of adults with disabilities regardless of the type of disorders. The links between coping strategies, indicators of quality of life and subjective well-being are described. Distancing, avoidance and positive revaluation strategies make the greatest contribution to the quality of life. We conducted a separate analysis of the determination of the quality of life by coping strategies in groups of people with various disabilities. The results of the study can be used to develop rehabilitation programs and help people with disabilities.

Managing common problems in the menopause

2018 ◽  
Vol 11 (7) ◽  
pp. 378-386
Author(s):  
Louise Newson ◽  
Nick Panay
Keyword(s):  
Quality Of Life ◽  
Health Risks ◽  
Healthcare Professionals ◽  
Medical Condition ◽  
Hormone Replacement ◽  
Ovarian Insufficiency ◽  
Life Event ◽  
Common Problems

The menopause is a normal life event for women and not an illness or medical condition. Despite this, menopause can predispose vulnerable women to distressing symptoms that impact adversely on their quality of life and to long term medical conditions such as osteoporosis, cardiovascular disease and dementia. Many healthcare professionals are uncertain about the management of the menopause, and this leads to many women not receiving treatment which is often beneficial to them. This article will cover the diagnosis of the menopause including premature ovarian insufficiency. Some of the health risks of the menopause will be discussed and treatment of the menopause, with a particular focus on hormone replacement therapy, will be covered in detail.

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