scholarly journals COVID-19 Pandemic and Patients with Rare Inherited Metabolic Disorders and Rare Autoinflammatory Diseases—Organizational Challenges from the Point of View of Healthcare Providers

2021 ◽  
Vol 10 (21) ◽  
pp. 4862
Author(s):  
Ewa Tobór-Świętek ◽  
Jolanta Sykut-Cegielska ◽  
Mirosław Bik-Multanowski ◽  
Mieczysław Walczak ◽  
Dariusz Rokicki ◽  
...  
Keyword(s):  
Metabolic Disorders ◽  
Healthcare Providers ◽  
Well Being ◽  
Point Of View ◽  
Autoinflammatory Diseases ◽  
Organizational Challenges ◽  
Vulnerable Patients ◽  
Inherited Metabolic Disorders ◽  
One Year ◽  
Patient Infection

COVID-19 pandemic is an organisational challenge for both healthcare providers and patients. People with rare inherited metabolic disorders (IMD) and rare autoinflammatory diseases (AD) are vulnerable patients whose well-being is deeply connected with regular follow-ups. This study aimed to assess how e one year of coronavirus pandemic has impacted the treatment of patients with IMD and AD in Poland. Surveys were distributed to all healthcare providers that coordinate the treatment of IMD and AD patients. Thirty-two responders (55%) answered the survey. They provide care to 1726 patients with IMD/AD, including 246 patients on dedicated treatment. In 35% of units, the regular appointments were disrupted, primarily because of patient infection. In 18 hospitals, remote visits were implemented, but only 66.6% of patients used this form of consultation. In 14/32 hospitals, administration of the therapy was delayed (median: 17.4 days). Forty-four patients suffered from SARS-COV-2 infection, in majority with mild symptoms. However, four adult patients developed complications, and one died following a SARS-COV-2 infection. Although most hospitals managed to maintain regular visits during the pandemic, more comprehensive implementation of telemedicine and switch to oral therapy or home infusions would be a reasonable solution for the current epidemic situation.

Clinical trials — the personal perspective of the research physician?

2020 ◽  
Vol 75 (3) ◽  
pp. 256-263
Author(s):  
Maria Y. Egorova ◽  
Irina A. Shuvalova ◽  
Olga I. Zvonareva ◽  
Igor D. Pimenov ◽  
Olga S. Kobyakova ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Medical Care ◽  
New Technologies ◽  
Healthcare Providers ◽  
Study Drug ◽  
Well Being ◽  
Personal Perspective ◽  
Public And Private ◽  
Factors Affecting ◽  
To Receive

Background. The organization of clinical trials (CTs) requires the participation and coordination of healthcare providers, patients, public and private parties. Obstacles to the participation of any of these groups pose a risk of lowering the potential for the implementation of CTs. Researchers are a key human resource in conducting of CT. Their motivation for participation can have a significant impact on the recruitment and retention of patients, on the quality of the data collected, which determines the overall outcome of the study. Aims to assess the factors affecting the inclusion of Russian physicians-researchers in CT, and to determine their role in relations with patients-participants. Materials and methods. The study was organized as a part of the Russian multicenter face-to-face study. A survey was conducted of researchers from 10 cities of Russia (20172018). The participation in the survey for doctors was anonymous and voluntary. Results. The study involved 78 respondents. Most research doctors highly value the importance of research for science (4,84 0,39), society (4,67 0,46) and slightly lower for participating patients (4,44 0,61). The expectations of medical researchers are related to improving their financial situation and attaining new experience (n = 14; 18,18%). However, the opportunity to work with new technologies of treatment and diagnosis (n = 41; 52,56%) acted as a motivating factor. According to the questionnaire, the vast majority of research doctors (n = 29; 37,18%) believe that the main reason for patients to participate in CT is to receive quality and free medical care. The most significant obstacle to the inclusion of participants in CT was the side effects of the study drug (n = 38; 48,71%). Conclusions. The potential of clinical researchers in Russia is very high. The patient-participant acts for the research doctor as the subject of the study, and not the object, so the well-being of the patient is not indifferent to the doctor. However, the features of the functioning of our health care system form the motivation of doctors-researchers (additional earnings, professional self-development) and the way they perceive the motivation of patients (CT as an opportunity to receive quality medical care).

PREREQUISITES FOR THE FORMATION OF A MECHANISM FOR STATE REGULATION OF SOCIAL GUARANTEES IN THE REGION

2017 ◽  
Author(s):  
Vitaly Lobas ◽  
◽  
Elena Petryaeva ◽  
Keyword(s):  
Social Protection ◽  
Well Being ◽  
State Regulation ◽  
The State ◽  
Point Of View ◽  
Periodic Review ◽  
Cost Of Living ◽  
Economic Relations ◽  
State Management ◽  
The Cost

The article deals with modern mechanisms for managing social protection of the population by the state and the private sector. From the point of view of forms of state regulation of the sphere of social protection, system indicators usually include the state and dynamics of growth in the standard of living of the population, material goods, services and social guarantees for the poorly provided segments of the population. The main indicator among the above is the state of the consumer market, as one of the main factors in the development of the state. Priority areas of public administration with the use of various forms of social security have been identified. It should be emphasized that, despite the legislative conflicts that exist today in Ukraine, mandatory indexation of the cost of living is established, which is associated with inflation. Various scientists note that although the definition of the cost of living index has a well-established methodology, there are quite a lot of regional features in the structure of consumption. All this is due to restrictions that are included in the consumer basket of goods and different levels of socio-economic development of regions. The analysis of the establishment and periodic review of the minimum consumer budgets of the subsistence minimum and wages of the working population and the need to form state insurance funds for unforeseen circumstances is carried out. Considering in this context the levers of state management of social guarantees of the population, we drew attention to the crisis periods that are associated with the market transformation of the regional economy. In these conditions, there is a need to develop and implement new mechanisms and clusters in the system of socio-economic relations. The components of the mechanisms ofstate regulation ofsocial guarantees of the population are proposed. The deepening of market relations in the process of reforming the system of social protection of the population should be aimed at social well-being.

L’absence chez Michel Butor. L’Emploi du temps et Degrés

2012 ◽  
pp. 66-80
Author(s):  
Michał Mrozowicki
Keyword(s):  
Human Memory ◽  
Point Of View ◽  
Narrative Discourse ◽  
The Novel ◽  
Michel Butor ◽  
Starting Point ◽  
One Year ◽  
The Moment ◽  
Narrative Mode ◽  
The City

Michel Butor, born in 1926, one of the leaders of the French New Novel movement, has written only four novels between 1954 and 1960. The most famous of them is La Modification (Second thoughts), published in 1957. The author of the paper analyzes two other Butor’s novels: L’Emploi du temps (Passing time) – 1956, and Degrés (Degrees) – 1960. The theme of absence is crucial in both of them. In the former, the novel, presented as the diary of Jacques Revel, a young Frenchman spending a year in Bleston (a fictitious English city vaguely similar to Manchester), describes the narrator’s struggle to survive in a double – spatial and temporal – labyrinth. The first of them, formed by Bleston’s streets, squares and parks, is symbolized by the City plan. During his one year sojourn in the city, using its plan, Revel learns patiently how to move in its different districts, and in its strange labyrinth – strange because devoid any centre – that at the end stops annoying him. The other, the temporal one, symbolized by the diary itself, the labyrinth of the human memory, discovered by the narrator rather lately, somewhere in the middle of the year passed in Bleston, becomes, by contrast, more and more dense and complex, which is reflected by an increasinly complex narration used to describe the past. However, at the moment Revel is leaving the city, he is still unable to recall and to describe the events of the 29th of February 1952. This gap, this absence, symbolizes his defeat as the narrator, and, in the same time, the human memory’s limits. In Degrees temporal and spatial structures are also very important. This time round, however, the problems of the narration itself, become predominant. Considered from this point of view, the novel announces Gerard Genette’s work Narrative Discourse and his theoretical discussion of two narratological categories: narrative voice and narrative mode. Having transgressed his narrative competences, Pierre Vernier, the narrator of the first and the second parts of the novel, who, taking as a starting point, a complete account of one hour at school, tries to describe the whole world and various aspects of the human civilization for the benefit of his nephew, Pierre Eller, must fail and disappear, as the narrator, from the third part, which is narrated by another narrator, less audacious and more credible.

D’une hétérotopie à l’autre où le vagabondage au féminin (Jean Echenoz, Un an)

2014 ◽  
pp. 156-163
Author(s):  
Simona Jişa
Keyword(s):  
Point Of View ◽  
Standard Of Living ◽  
Human Being ◽  
The South ◽  
Railway Stations ◽  
Spatial Point ◽  
Strong Feeling ◽  
Continuous Decrease ◽  
One Year ◽  
Jean Echenoz

Jean Echenoz’s text presents Victoria’s story who runs away from Paris, believing that she has killed her lover. Her straying (that embraces the form of a relative deterritorialization in a Deleuzian sense) lasts one year and it is built up geographically upon a descent (more or less symbolical) to the South of France and, after that, she comes back to Paris and encloses the spatial and textual curl. From a spatial point of view, she turns into a heterotopia (Foucault) every place where she is located, fact that reflects her incapability of constituting a personal, intimate space. The railway stations, the trains, the hotels, the improvised houses of those with no fixed abode are turning, according to Marc Augé’s terminology, into a « non-lieux » that excludes human being. Her vagrancy is characterized through a continuous flight from police and people and through a continuous decrease of her standard of living and dignity. It’s not about a quest of oneself, but about a loss of oneself. Urged by a strong feeling of culpability, her vagrancy is a self-punishment that comes to an end when the concerns of her problems disappear and she finds out that her lover is alive.

Integrating Focusing and Differentiation: A Therapeutic Path for Couples in Intimate Relationships

2018 ◽  
Vol 3 ◽  
Author(s):  
Evi Zohar
Keyword(s):  
Couples Therapy ◽  
Therapeutic Potential ◽  
Well Being ◽  
Point Of View ◽  
The Body ◽  
Self Awareness ◽  
Emotional Healing ◽  
Felt Sense ◽  
Inner World

Continuing the workshop I've given in the WPC Paris (2017), this article elaborates my discussion of the way I interlace Focusing with Differentiation Based Couples Therapy (Megged, 2017) under the systemic view, in order to facilitate processes of change and healing in working with intimate couples. This article presents the theory and rationale of integrating Differentiation (Bowen, 1978; Schnarch, 2009; Megged, 2017) and Focusing (Gendlin, 1981) approaches, and its therapeutic potential in couple's therapy. It is written from the point of view of a practicing professional in order to illustrate the experiential nature and dynamics of the suggested therapeutic path. Differentiation is a key to mutuality. It offers a solution to the central struggle of any long term intimate relationship: balancing two basic life forces - the drive for individuality and the drive for togetherness (Schnarch, 2009). Focusing is a body-oriented process of self-awareness and emotional healing, in which one learns to pay attention to the body and the ‘Felt Sense’, in order to unfold the implicit, keep it in motion at the precise pace it needs for carrying the next step forward (Gendlin, 1996). Combining Focusing and Differentiation perspectives can cultivate the kind of relationship where a conflict can be constructively and successfully held in the inner world of each partner, while taking into consideration the others' well-being. This creates the possibility for two people to build a mutual emotional field, open to changes, permeable and resilient.

Mentoring to Promote Professional Well-being

Relay Journal ◽  
2019 ◽  
pp. 306-318
Author(s):  
Hatice Karaaslan
Keyword(s):  
Positive Emotions ◽  
Well Being ◽  
Research Experience ◽  
Reflective Dialogue ◽  
Frequent Contact ◽  
Depth Analysis ◽  
Junior Colleague ◽  
One Year ◽  
Personal Reflections

This article elaborates on a follow-up mentoring session conducted with a junior colleague who had frequent contact with me over a period of one year during her coursework as she considered me a senior instructor with substantial research experience. The purpose was to exploit the strategies of advising in a mentoring context utilizing intentional reflective dialogue (IRD) to encourage reflection on professional well-being. To facilitate the process and achieve an in-depth analysis of her level of professional well-being, I employed Seligman’s (2011) PERMA model, explaining professional well-being with reference to its components of positive emotions, engagement, relationships, meaning, and accomplishment. In the article, I briefly give information on the context and background, the purpose, and the professional well-being model used. I then outline the flow of the session, and point out and discuss how the strategies of advising have been exploited through a series of IRD exchanges in an effort to stimulate an in-depth discussion. Finally, I present my personal reflections as well as the potential implications to be considered while conducting mentor-mentee sessions and improving professional well-being in educational settings.

Cardiovascular Disease in Spondyloarthritides

2020 ◽  
Vol 18 (5) ◽  
pp. 473-487 ◽  
Author(s):  
Charalampos Papagoras ◽  
Paraskevi V. Voulgari ◽  
Alexandros A. Drosos
Keyword(s):  
Cardiovascular Disease ◽  
Cardiovascular Risk ◽  
Healthcare Providers ◽  
Cardiovascular Death ◽  
Point Of View ◽  
Treat To Target ◽  
Inflammatory Joint Diseases ◽  
Scientific Organizations ◽  
Increased Risk ◽  
Risk Patients

The spondyloarthritides are a group of chronic systemic inflammatory joint diseases, the main types being ankylosing spondylitis (AS) and psoriatic arthritis (PsA). Evidence accumulating during the last decades suggests that patients with AS or PsA carry an increased risk for cardiovascular disease and cardiovascular death. This risk appears to be mediated by systemic inflammation over and above classical cardiovascular risk factors. The excess cardiovascular risk in those patients has been formally acknowledged by scientific organizations, which have called physicians’ attention to the matter. The application by Rheumatologists of new effective anti-rheumatic treatments and treat-to-target strategies seems to benefit patients from a cardiovascular point of view, as well. However, more data are needed in order to verify whether anti-rheumatic treatments do have an effect on cardiovascular risk and whether there are differences among them in this regard. Most importantly, a higher level of awareness of the cardiovascular risk is needed among patients and healthcare providers, better tools to recognize at-risk patients and, ultimately, commitment to address in parallel both the musculoskeletal and the cardiovascular aspect of the disease.

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