scholarly journals Common concerns, barriers to care, and the lived experience of individuals with hepatitis B: a qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Freeland ◽  
Sean Farrell ◽  
Priyanka Kumar ◽  
Maureen Kamischke ◽  
Michaela Jackson ◽  
...  
Keyword(s):  
Hepatitis B ◽  
Lived Experience ◽  
Information Needs ◽  
Community Education ◽  
Psychological Impact ◽  
Emotional Needs ◽  
Non Profit ◽  
Hbv Prevention ◽  
Spread Analysis

Abstract Background An estimated between 257 and 292 million people live with chronic HBV globally. While much is known about the causes, and epidemiology of HBV, little is understood about the quality of life and impact of HBV on those living with the infection. Methods A random sample of HBV-related email queries sent to the Hepatitis B Foundation, a U.S.-based non-profit organization, over a 12-month period in 2018–2019 were retrieved, tabulated, and analyzed qualitatively to highlight information needs and explore the experiences of people living with HBV and their families and loved ones. Codebook development was informed by the literature and through line-by-line reading of a sub-sample of queries. Data analysis was facilitated by NVivo12 software. Data were coded independently by two members of the research team and intercoder reliability was assessed to assure coding accuracy throughout the coding phase. Results A total of 338 queries from people around the globe were identified and analyzed. The analysis revealed three thematic groups: 1) health-specific challenges associated with diagnosis and treatment, 2) emotional needs related to experiences with HBV stigma, discrimination, fear, social isolation, and distress and 3) informational needs related to HBV prevention and transmission, and interpretation of laboratory tests. Conclusions People living with HBV are in need of information to manage their disease and prevent its spread. Analysis of queries uncovered significant misconceptions about HBV transmission and treatment. Additionally, the emotional and psychological impact of an HBV diagnosis on those living with the infection is significant. There is a clear need for patient and community education to expand knowledge and awareness of HBV globally to achieve 2030 WHO HBV elimination goals.

scholarly journals Common Concerns, Barriers to Care, and the Lived Experience of Individuals with Hepatitis B: A Qualitative Study

2021 ◽  
Author(s):  
Catherine Freeland ◽  
Sean Farrell ◽  
Priyanka Kumar ◽  
Maureen Kamischke ◽  
Michaela Jackson ◽  
...  
Keyword(s):  
Hepatitis B ◽  
Lived Experience ◽  
Information Needs ◽  
Community Education ◽  
Psychological Impact ◽  
Emotional Needs ◽  
Non Profit ◽  
Hbv Prevention ◽  
Spread Analysis

Abstract Background & Aims: An estimated between 257 and 292 million people live with chronic HBV globally. While much is known about the causes, and epidemiology of HBV, little is understood about the quality of life and impact of HBV on those living with the infection. Approach and Results: A random sample of HBV-related email queries sent to the Hepatitis B Foundation, a U.S.-based non-profit organization, over a 12-month period in 2018-2019 were retrieved, tabulated, and analyzed qualitatively to highlight information needs and explore the experiences of people living with HBV and their families and loved ones. Codebook development was informed by the literature and through line-by-line reading of a sub-sample of queries. Data analysis was facilitated by NVivo12 software. Data were coded independently by two members of the research team and intercoder reliability was assessed to assure coding accuracy throughout the coding phase. A total of 338 queries from people around the globe were identified and analyzed. The analysis revealed three thematic groups: 1) health-specific challenges associated with diagnosis and treatment, 2) emotional needs related to experiences with HBV stigma, discrimination, fear, social isolation, and distress and 3) informational needs related to HBV prevention and transmission, and interpretation of laboratory tests.Conclusions: People living with HBV are in need of information to manage their disease and prevent its spread. Analysis of queries uncovered significant misconceptions about HBV transmission and treatment. Additionally, the emotional and psychological impact of an HBV diagnosis on those living with the infection is significant. There is a clear need for patient and community education to expand knowledge and awareness of HBV globally to achieve 2030 WHO HBV elimination goals.

An Overview of Facilities Providing Clinical Services for Persons Who Stutter in Kuwait

2016 ◽  
Vol 1 (4) ◽  
pp. 79-95
Author(s):  
Latifa Alsalmi ◽  
Robert Mayo
Keyword(s):  
Special Education ◽  
Department Heads ◽  
Clinical Services ◽  
Medical Settings ◽  
Non Profit ◽  
Future Studies ◽  
Language Services ◽  
Medical Centers ◽  
Clinical Directors

Presently, no clear picture is available about the facilities providing clinical services for persons who stutter (PWS) in Kuwait. This information is crucial for any awareness program to be established in the future. The purpose of this study was to identify clinical facilities and speech-language personnel that provide services for PWS in Kuwait. Participants consisted of 21 clinical directors of governmental medical centers, non-profit clinics, and private clinics as well as department heads of governmental school clinics where speech-language services were provided. Participants were interviewed regarding the availability of speech-language services within their centers and whether or not PWS receive services. The results revealed that four out of five governmental medical centers with a total of 32 speech-language pathologists (SLPs) provided services for PWS. Additionally, 12 schools of special education were found to have 62 SLPs on their staff providing fluency services for students. Finally, two stand-alone private clinics and one non-profit clinic provided services for PWS. Results indicated an overall shortage of SLPs in the country, especially in medical settings. This study sets the foundation for a series of future studies investigating the type and quality of stuttering services provided by the identified facilities in Kuwait.

Covid-19 Pandemic And Sustainabilitystudy At Madrasah Ibtidaiyyahpsm Sulursewu, Teguhan, Ngawi, East Java

2020 ◽  
Vol 1 (02) ◽  
pp. 103-114
Author(s):  
Moh. Toriqul Chaer ◽  
Muhammad Atabiqul As'ad ◽  
Qusnul Khorimah ◽  
Erik Sujarwanto
Keyword(s):  
Online Learning ◽  
Learning Strategies ◽  
Psychological Impact ◽  
Educational Institutions ◽  
Participatory Action ◽  
Social Phenomena ◽  
Learning Programs ◽  
Teachers And Students ◽  
The Government

The continuity of learning programs during the COVID-19 pandemic found educational institutions, especially Madrasah Ibtidaiyyah (MI) temporarily closed the learning process in schools. To prevent the spread of COVID-19 that is currently engulfing Indonesia. Lack of preparation, readiness and learning strategies have a psychological impact on teachers and students. Declining quality of skills, lack of supporting facilities and infrastructure. Learning from home (online) is an effort by the government program to ensure the continuity of learning in the pandemic period. The research method uses participatory action research (PAR), which focuses on understanding social phenomena that occur in the community and mentoring efforts on the problems faced. The assistance effort is to help the children of MI Sulursewu, Ngawi in participating in online learning related to; 1). Preparation of activities, 2). Counselling participants offline method, 3). Offline activities method. Results of the study show that the mentoring activities following the target of achievement; first, the activity can be carried out following the schedule that has been set. Second, students are always on time for the online learning hours that have been set. Offline methods show that efforts can help ease the burden on parents, but can also make it easier for students to receive subject matter.  

ДОЛГОСРОЧНАЯ ПРОФИЛАКТИКА АНГИООТЕКОВ У ПАЦИЕНТОВ С НАО

2019 ◽  
pp. 75-83
Author(s):  
T.V. Latysheva ◽  
E.A. Latysheva ◽  
I.A. Manto
Keyword(s):  
Depressive Disorders ◽  
Daily Life ◽  
Social Activity ◽  
Psychological Impact ◽  
Therapeutic Strategies ◽  
Risk Of Death ◽  
Career Opportunities ◽  
Acute Attacks ◽  
Life Career

Наследственный ангиоотек (НАО) с дефицитом С1ингибитора (С1ИНГ) представляет собой редкое заболевание, которое оказывает сильное воздействие на жизнь пациентов как физически, так и эмоционально. Непредсказуемость атак влияет на повседневную жизнь, выбор профессии, социальную активность. Кроме того, страх перед развитием отека, а также связанными с ним болью и риском смерти приводит к депрессивным расстройствам, характерным для хронических, в особенности жизнеугрожающих заболеваний. Появление современных патогенетических препаратов способно минимизировать влияние НАО и улучшить качество жизни больных. В основе терапии НАО лежат долгосрочная профилактика, краткосрочная профилактика и купирование острых атак. В данной статье речь пойдет о долгосрочной профилактике.Hereditary angioedema (HAE) due to of C1inhibitor deficiency is a rare disease, which causes a strong physical and psychological impact on patients lives. HAE affects daily life, career opportunities, and social activity. In addition, fear of the edema development, as well as the associated with it pain and risk of death leads to depressive disorders specific for chronic (especially lifethreatening) diseases. The emergence of modern pathogenetic drugs can minimize the effect of HAE and improve the patients quality of life. There are three different therapeutic strategies that are used for HAE treatment: longterm prophylaxis, shortterm and ondemand therapy for acute attacks. This article focuses on longterm prophylaxis.

UNDER-GRADUATE STUDENTS AND THE ROLE OF E- LIBRARIES TO UPLIFT THE QUALITY OF HIGHER EDUCATION

2018 ◽  
Vol 6 (26) ◽  
Author(s):  
Dharambeer Singh
Keyword(s):  
Graduate Students ◽  
Digital Libraries ◽  
Rural Areas ◽  
Multiple Access ◽  
Information Needs ◽  
Quality Of Higher Education ◽  
Brick And Mortar ◽  
Education Status

Digital libraries, designed to serve people and their information needs in the same way as traditional libraries, present distinct advantages over brick and mortar facilities: elimination of physical boundaries, round-the-clock access to information, multiple access points, networking abilities, and extended search functions. As a result, they should be especially well-suited for the disables. However, minorities, those affected by lower income and education status, persons living in rural areas, the physically challanged, and developing countries as a whole consistently suffer from a lack of accessibility to digital libraries. This paper evaluates the effectiveness and relevance of digital libraries currently in place and discusses what could and should be done to improve accessibility to digital libraries for under-graduate students.

scholarly journals How can electric lighting contribute to human health and well-being?

2021 ◽  
Vol 53 (5) ◽  
pp. 515-522
Author(s):  
P Raynham
Keyword(s):  
Human Health ◽  
Psychological Impact ◽  
Health Benefits ◽  
Well Being ◽  
Health Problems ◽  
Starting Point ◽  
Electric Light ◽  
Health And Well Being ◽  
Hypothetical Explanation

Electric light in buildings may provide some health benefits; however, for most people these benefits are likely to be small. It is possible for electric lighting to cause health problems, if there is too little light or there is glare, but for the most part there is good guidance available and these problems can be avoided. The quality of the lit environment can have a psychological impact and this may in turn impact well-being. A starting point for this is perceived adequacy of illumination. Related lighting metrics are examined and a hypothetical explanation is suggested.

Automated Insulin Delivery Systems: Today, Tomorrow and User Requirements

2021 ◽  
pp. 193229682110299
Author(s):  
Marga Giménez ◽  
Ignacio Conget ◽  
Nick Oliver
Keyword(s):  
Lived Experience ◽  
Diabetes Management ◽  
Real Life ◽  
Insulin Delivery ◽  
Qualitative Assessment ◽  
Management Tool ◽  
Diabetes Distress ◽  
Glycemic Targets

Automated insulin delivery (AID) is the most recent advance in type 1 diabetes (T1D) management. It has the potential to achieve glycemic targets without disabling hypoglycemia, to improve quality of life and reduce diabetes distress and burden associated with self-management. Several AID systems are currently licensed for use by people with T1D in Europe, United States, and the rest of the world. Despite AID becoming a reality in routine clinical practice over the last few years, the commercially hybrid AID and other systems, are still far from a fully optimized automated diabetes management tool. Implementation of AID systems requires education and support of healthcare professionals taking care of people with T1D, as well as users and their families. There is much to do to increase usability, portability, convenience and to reduce the burden associated with the use of the systems. Co-design, involvement of people with lived experience of T1D and robust qualitative assessment is critical to improving the real-world use of AID systems, especially for those who may have greater need. In addition to this, information regarding the psychosocial impact of the use of AID systems in real life is needed. The first commercially available AID systems are not the end of the development journey but are the first step in learning how to optimally automate insulin delivery in a way that is equitably accessible and effective for people living with T1D.

scholarly journals Digestive symptoms in daily life of chronic adrenal insufficiency patients are similar to irritable bowel syndrome symptoms

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
L. Quénéhervé ◽  
D. Drui ◽  
J. Blin ◽  
M. Péré ◽  
E. Coron ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Irritable Bowel Syndrome ◽  
Adrenal Insufficiency ◽  
Gastrointestinal Symptoms ◽  
Control Group ◽  
Non Profit ◽  
Acute Adrenal Insufficiency ◽  
Irritable Bowel ◽  
Rome Iv

AbstractGastrointestinal symptoms are frequent in acute adrenal insufficiency. Although digestive symptoms can significantly reduce quality of life, they are rarely described in patients with treated chronic adrenal insufficiency (CAI). We aimed to characterize digestive symptoms in CAI patients. We used the section pertaining functional bowel disorders of the Rome IV questionnaire. A questionnaire was published on the website of the non-profit patient association “Adrenals” (NPPA of CAI patients) for five months. Information on demographics, characteristics of adrenal insufficiency, digestive symptoms and quality of life was collected. The relatives of CAI patients served as a control group. We analyzed responses of 33 control subjects and 119 patients (68 primary adrenal insufficiency (PAI), 30 secondary adrenal insufficiency (SAI) and 21 congenital adrenal hyperplasia (CAH)). Abdominal pain at least once a week over the past 3 months was reported by 40%, 47% and 33% of patients with PAI, SAI and CAH respectively versus 15% for the controls (p = 0.01). Symptoms were consistent with the Rome IV criteria for irritable bowel syndrome in 27%, 33% and 33% of patients respectively versus 6% for the controls (p < 0.0001). Quality of life was described as poor or very poor in 35%, 57% and 24% of patients respectively versus 5% for the controls (p < 0.0001). In conclusion, digestive symptoms are frequent and incapacitating in CAI patients and similar to symptoms of irritable bowel syndrome in 30% of CAI patients. Assessment and management of digestive symptoms should be considered a priority for physicians treating patients with CAI.

scholarly journals Engaging patients: how to speak so patients want to listen

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
S Rubinelli
Keyword(s):  
Health Professional ◽  
Lived Experience ◽  
Health Information ◽  
Health Professionals ◽  
Health Condition ◽  
Public Health Institutions ◽  
Health Institutions ◽  
Basic Approaches ◽  
The Impact

Abstract The paternalistic approach to health professional-patient communication is often no longer successful. The main reasons for this include the fact that trust in medicine and health professionals is no longer taken for granted. In many domains, the concepts of 'expert' and 'science' are in shadow. Moreover, patients can access all sorts of health information, including information that is or seems inconsistent with the advice given by their health professionals. This talk aims to illustrate some basic approaches to communication that can enhance health professional-patient interaction. First, health professionals should consider their communication with patients as a form of persuasion. Persuasion, that does not equal manipulation, is a way to communicate that takes into consideration the knowledge, beliefs, and attitudes of interlocutors. By adopting a person-centered style, health professionals should present their advice by contextualizing it into the emotional and cognitive setting of the patients. Second, communication should consider the lived experience of patients, that is the impact that a health condition or a preventive behavior has on their quality of life and their experience of pleasure. Indeed, managing health conditions is not just applying health advice: it often demands a change in lifestyles that can negatively impact how patients live their lives. Third, health professionals should develop clear strategies to engage with information that patients find from other sources. Health professionals must ask patients if they disagree with them, and to clarify any eventual difference of opinion. The information age has positively favored a democratization of health information. Yet, it imposes that health systems care for their communication. This talk concludes by presenting main evidence from on how to reinforce hospitals, public health institutions, and health services in communication so that patients want to listen.

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