scholarly journals A ritka betegségek ellátásának aktuális kérdései

2017 ◽  
Vol 158 (47) ◽  
pp. 1851-1856
Author(s):  
Gábor Pogány
Keyword(s):  
Health Care ◽  
Rare Disease ◽  
Health Care Providers ◽  
Rare Diseases ◽  
Best Practice ◽  
Educational Systems ◽  
Care Providers ◽  
Health And Social Care ◽  
Help Line ◽  
Care System

Abstract: The aim was to present the actual situation of rare diseases, especially to characterize the circumstances in Hungary. The most important developments were summarized which could help the care of rare disease patients in the everyday practice. There are around 800 000 patients with rare diseases in Hungary. The lack of information leads to „invisibility” for the health and social care system (most of them without ICD code). Therefore, these patients still have a huge disadvantage even when compared to the patients of common diseases. Important national and international measures took place in the last years to decrease these disadvantages. The Hungarian Centres of Expertise were officially approved, thus several health care providers were able to get membership in the forming European Reference Networks. The rare disease specific “Lifebelt” Information Centre and Help Line was established by HUFERDIS. These steps assist the implementation of the National Rare Disease Plan, although its formal approval process has temporarily stopped because of the reorganization of the health care system. The summarized developments can contribute to define better patient directions, and thus decrease the family knocks about the maze of health, social and educational systems. The realization of Rare Disease National Strategy is needed to improve the current fragmentation of services and enable patients and health, social and educational professionals to provide and use best practice care. This will ensure that all patients with rare disease cannot only be diagnosed quickly, but also have timely access to the care and support that they need, resulting in a decreasing burden of families and society. Orv Hetil. 2017; 158(47): 1851–1856.

Current Practices and Challenges of Medical Services on Health Care System of Mandalay General Hospital

2019 ◽  
Vol 31 (2) ◽  
pp. 131
Keyword(s):  
Health Care ◽  
General Hospital ◽  
Health Care Providers ◽  
Quality Care ◽  
Healthcare Providers ◽  
Medical Services ◽  
Tertiary Level ◽  
Care Providers ◽  
Level Hospital ◽  
Care System

In Myanmar, the main challenge to provide quality healthcare by Universal Health Care approach is documented as low health services coverage with substantial wealth-based inequality. To achieve the effective health care system, strong medical care system is essential. Understanding on challenges and needs in provision of medical services among patients and health care providers is critical to provide quality care with desirable outcomes. The aim of the study was to explore the patients’ and health care providers’ perceptions on the challenges in provision of medical services at the Mandalay General Hospital. This was a qualitative study conducted at the tertiary level hospital (Mandalay General Hospital). The data was collected by using focus group discussions and in-depth interviews with hospitalized patients or attendants, healthcare providers such as medical doctors, nurses, laboratory scientists and hospital administrators in March 2017. The qualitative data was analyzed using themes by themes matrix analysis. Most patients were satisfied with the care provided by the doctors because they believed that they received quality care. However, some patients complained about long waiting time for elective operation, congested conditions in the ward, burden for investigations outside the hospital for urgent needs and impolite manners of general workers. Healthcare providers reported that they had heavy workload due to limited human and financial resources in the hospital, poor compliances with hospital rules and regulation among patients and attendants, and inefficient referral practices from other health facilities. Other challenges experienced by healthcare providers were lack of ongoing training to improve knowledge and skills, limited health infrastructure and inadequate medicinal supplies. The findings highlighted the areas needed to be improved to provide quality health care at the tertiary level hospital. The challenges and problems encountered in this hospital can be improved by allocating adequate financial and human resources. The systematic referral system and hospital management guidelines are needed to reduce workload of health staff.

scholarly journals Access to information supporting availability of medicines for patients suffering from rare diseases looking for possible treatments: the EuOrphan Service

Medicina ◽  
2007 ◽  
Vol 43 (6) ◽  
pp. 441 ◽  
Author(s):  
Donatas Stakišaitis ◽  
Indrė Špokienė ◽  
Jonas Juškevičius ◽  
Konstantinas Valuckas ◽  
Paola Baiardi
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Rare Diseases ◽  
Health Care Professionals ◽  
Large Population ◽  
New Drugs ◽  
Public Health Care ◽  
Quality Information ◽  
Care Providers ◽  
Pharmaceutical Industries

Currently in Europe, approximately 30 million people suffer from rare diseases, and a major problem is that many patients do not have access to quality healthcare for their disorders. Moreover, there is also a lack of quality information and a networking system aimed at supporting interaction among patients, clinicians, researchers, pharmaceutical industries, and governmental bodies. The purpose of this article is to inform physicians, public health care professionals, and other health care providers about EuOrphan service, the aim of which is to ensure easier access to quality information on rare diseases and their treatment. A set of web-based services is available at www.euorphan.com where information for target-users on treatments and products available worldwide for rare disease care as well as indications about healthcare centers are provided. Moreover, the service aims at providing consultancies for pharmaceutical companies to ultimately support the European legislation in bringing new drugs of a high ethical standard to the market and to exert a positive impact on the large population of patients suffering from rare diseases in Europe. The services provided by EuOrphan can facilitate concrete networking among patients, patient associations, doctors, and companies and also support the organization of clinical trials. In this perspective, EuOrphan could become a very valuable tool for globalizing the information about the availability of treatment (authorized or under development) of orphan patients.

scholarly journals “Take the treatment and be brave”: Care experiences of pregnant women with rifampicin-resistant tuberculosis

PLoS ONE ◽  
2020 ◽  
Vol 15 (12) ◽  
pp. e0242604
Author(s):  
Marian Loveday ◽  
Sindisiwe Hlangu ◽  
Jennifer Furin
Keyword(s):  
Health Care ◽  
Pregnant Women ◽  
Health Care System ◽  
Health Care Providers ◽  
Physical Symptoms ◽  
Coding System ◽  
Care Providers ◽  
Convenience Sample ◽  
Care System

Background There are few data on the on the care experiences of pregnant women with rifampicin-resistant TB. Objective To describe the treatment journeys of pregnant women with RR-TB—including how their care experiences shape their identities—and identify areas in which tailored interventions are needed. Methods In this qualitative study in-depth interviews were conducted among a convenience sample from a population of pregnant women receiving treatment for RR-TB. This paper follows COREQ guidelines. A thematic network analysis using an inductive approach was performed to analyze the interview transcripts and notes. The analysis was iterative and a coding system developed which focused on the care experiences of the women and how these experiences affected their perceptions of themselves, their children, and the health care system in which treatment was received. Results Seventeen women were interviewed. The women described multiple challenges in their treatment journeys which required them to demonstrate sustained resilience (i.e. to “be brave”). Care experiences required them to negotiate seemingly contradictory identities as both new mothers—“givers of life”—and RR-TB patients facing a complicated and potentially deadly disease. In terms of their “pregnancy identity” and “RR-TB patient identity” that emerged as part of their care experiences, four key themes were identified that appeared to have elements that were contradictory to one another (contradictory areas). These included: 1) the experience of physical symptoms or changes; 2) the experience of the “mothering” and “patient” roles; 3) the experience of the care they received for their pregnancy and their RR-TB; and 4) the experience of community engagement. There were also three areas that overlapped with both roles and during which identity was negotiated/reinforced and they included: 1) faith; 2) socioeconomic issues; and 3) long-term concerns over the child’s health. At times, the health care system exacerbated these challenges as the women were not given the support they needed by health care providers who were ill-informed or angry and treated the women in a discriminatory fashion. Left to negotiate this confusing time period, the women turned to faith, their own mothers, and the fathers of their unborn children. Conclusion The care experiences of the women who participated in this study highlight several gaps in the current health care system that must be better addressed in both TB and perinatal services in order to improve the therapeutic journeys for pregnant women with RR-TB and their children. Suggestions for optimizing care include the provision of integrated services, including specialized counseling as well as training for health care providers; engagement of peer support networks; provision of socioeconomic support; long-term medical care/follow-up for children born to women who were treated for RR-TB; and inclusion of faith-based services in the provision of care.

scholarly journals Interpreting in Sexual and Reproductive Health Consults With Burma Born Refugees Post Settlement: Insights From an Australian Qualitative Study

2021 ◽  
Vol 6 ◽  
Author(s):  
Amita Tuteja ◽  
Elisha Riggs ◽  
Lena Sanci ◽  
Lester Mascarenhas ◽  
Di VanVliet ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Health Care Professionals ◽  
Best Practice ◽  
Qualitative Methodology ◽  
Future Research ◽  
Care Providers ◽  
Face To Face ◽  
Consultation Room ◽  
Privacy And Confidentiality

Interpreters work with health care professionals to overcome language challenges during sexual and reproductive (SRH) health discussions with people from refugee backgrounds. Disclosures of traumatic refugee journeys and sexual assault combined with refugees’ unfamiliarity with Western health concepts and service provision can increase the interpreting challenges. Published literature provides general guidance on working with interpreters in primary care but few studies focus on interpretation in refugee SRH consults. To address this, we explored the challenges faced by providers of refugee services (PRS) during interpreter mediated SRH consultations with Burma born refugees post settlement in Australia. We used qualitative methodology and interviewed 29 PRS involved with migrants from Burma including general practitioners, nurses, interpreters, bilingual social workers, and administrative staff. The interviews were audio-recorded, transcribed, and subjected to thematic analysis following independent coding by the members of the research team. Key themes were formulated after a consensus discussion. The theme of “interpretation related issues” was identified with six sub-themes including 1) privacy and confidentiality 2) influence of interpreter’s identity 3) gender matching of the interpreter 4) family member vs. professional interpreters 5) telephone vs. face-to-face interpreting 6) setting up the consultation room. When faced with these interpretation related challenges in providing SRH services to people from refugee backgrounds, health care providers combine best practice advice, experience-based knowledge and “mundane creativity” to adapt to the needs of the specific patients. The complexity of interpreted SRH consultations in refugee settings needs to be appreciated in making good judgments when choosing the best way to optimize communication. This paper identifies the critical elements which could be incorporated when making such a judgement. Future research should include the experiences of refugee patients to provide a more comprehensive perspective.

Outside Looking In: A Pharmacist's Personal Journey With Family Elders

2019 ◽  
Vol 34 (3) ◽  
pp. 156-167
Author(s):  
Jeannette Y. Wick
Keyword(s):  
Health Care ◽  
Health Care System ◽  
Health Care Providers ◽  
Transitions Of Care ◽  
Clinical Inertia ◽  
Older Individuals ◽  
Care Providers ◽  
Term Care ◽  
Personal Journey ◽  
Care System

Pharmacists who work in long-term care—or in any area of health care—are exposed to the health care system on a daily basis. While most of us recognize that the health care system has problems, especially at transitions of care, few of us appreciate fully how serious these problems can be. Certifying and accrediting agencies have encouraged health care providers to step out of their silos and work more collaboratively, and educators have emphasized understanding geriatric syndromes. A description of a personal journey through the health system—for both the patient and the caregiver—with two older individuals, this narrative discusses how difficult it is for patients to understand what's happening around them. It also discusses the clinical inertia in addressing geriatric issues and offers suggestions to health care providers facing similar situations.

Maintaining Safe Breastfeeding Practices During the COVID-19 Pandemic: An Overview of the Evidence to Inform Clinical Guidelines

2021 ◽  
Vol 40 (3) ◽  
pp. 140-145
Author(s):  
Tiffany Gwartney ◽  
Allyson Duffy
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Best Practice ◽  
Newborn Health ◽  
Care Providers ◽  
Postnatal Transmission ◽  
Breastfeeding Practices ◽  
Evidential Support ◽  
Guidelines And Recommendations ◽  
The Impact

The impact of the COVID-19 pandemic upon the health care landscape has prompted many organizations to revise policies in response to ever-changing guidelines and recommendations regarding safe breastfeeding practices. The application of these professional guidelines into clinical practice is fraught with barriers, inconsistencies, and often-minimal evidential support. Key concerns for health care providers and patients include antenatal versus postnatal transmission, milk transmission, and separation care versus rooming-in, including the subsequent impacts upon breastfeeding and bonding. While SARS-CoV-2 is a novel virus, the volume of literature to support best practice for couplet care continues to be developed at a rapid pace. The benefits of breastfeeding are steeped in evidence and outweigh the potential risk of transmission of COVID-19 from mother to newborn. Health care organizations must continue to seek guidance for policy revision within the ever-growing body of evidence for best practice and evaluate current practices for feasibility during and after hospitalization.

HIV status, trust in health care providers, and distrust in the health care system among Bronx women

AIDS Care ◽  
2007 ◽  
Vol 19 (2) ◽  
pp. 226-234 ◽  
Author(s):  
C. O. Cunningham ◽  
N. L. Sohler ◽  
L. Korin ◽  
W. Gao ◽  
K. Anastos
Keyword(s):  
Health Care ◽  
Health Care System ◽  
Health Care Providers ◽  
Care Providers ◽  
Hiv Status ◽  
Care System

Disclosing Gender-Based Violence During Health Care Visits: A Patient-Centered Approach

2017 ◽  
Vol 35 (23-24) ◽  
pp. 5552-5573 ◽  
Author(s):  
Jessica R. Williams ◽  
Rosa M. Gonzalez-Guarda ◽  
Valerie Halstead ◽  
Jacob Martinez ◽  
Laly Joseph
Keyword(s):  
Health Care ◽  
Human Trafficking ◽  
Health Care System ◽  
Health Care Providers ◽  
Qualitative Content Analysis ◽  
Care Providers ◽  
Gender Based Violence ◽  
Patient Centered ◽  
Gender Based ◽  
Care System

The purpose of this study was to better understand victims’ perspectives regarding decisions to disclose gender-based violence, namely, intimate partner violence (IPV) and human trafficking, to health care providers and what outcomes matter to them when discussing these issues with their provider. Twenty-five participants from racially/ethnically diverse backgrounds were recruited from a family justice center located in the southeastern United States. Two fifths had experienced human trafficking, and the remaining had experienced IPV. Upon obtaining informed consent, semistructured, in-depth interviews were conducted. Interviews were audio recorded and transcribed verbatim. Qualitative content analysis was used to examine interview data. Five primary themes emerged. Three themes focused on factors that may facilitate or impede disclosure: patient–provider connectedness, children, and social support. The fourth theme was related to ambiguity in the role of the health care system in addressing gender-based violence. The final theme focused on outcomes participants hope to achieve when discussing their experiences with health care providers. Similar themes emerged from both IPV and human trafficking victims; however, victims of human trafficking were more fearful of judgment and had a stronger desire to keep experiences private. Cultural factors also played an important role in decisions around disclosure and may interact with the general disparities racial/ethnic minority groups face within the health care system. Recognizing factors that influence patient engagement with the health care system as it relates to gender-based violence is critical. The health care system can respond to gender-based violence and its associated comorbidities in numerous ways and interventions must be driven by the patient’s goals and desired outcomes of disclosure. These interventions may be better served by taking patient-centered factors into account and viewing the effectiveness of intervention programs through a behavioral, patient-centered lens.

scholarly journals se-atlas: Mapping of Health Care Providers for People With Rare Diseases - a Cross-sectional Survey From the User Perspective

2021 ◽  
Author(s):  
Jannik Schaaf ◽  
Michaela Neff ◽  
Manuela Till ◽  
Niels Tegtbauer ◽  
Holger Storf
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Rare Diseases ◽  
User Satisfaction ◽  
Online Survey ◽  
Care Providers ◽  
Cross Sectional Survey ◽  
Total Period ◽  
Patient Organisations ◽  
System Usability Scale

Abstract BackgroundIn rare diseases, only a low number of regionally distributed experts are available in medical care. The health service platform for rare diseases (www.se-atlas.de) provides a search for health care providers and patient organisations in Germany for specific rare diseases and presents the results to patients or physicians. The objective of this study was to examine the background and purpose, user satisfaction and usability when using se-atlas and to receive suggestions on improvements for implementation in the next release of se-atlas. MethodsWe conducted an online survey over a total period of five weeks between December 2020 and January 2021. Participants were members of patient organisations of rare diseases and experts of rare diseases centres in Germany. The questionnaire addressed the objectives of this study in 10 questions. We used Likert scales (4 to 6 points), as well as the System Usability Scale to measure usability (range: 0 to 100). The data obtained from the survey was analysed descriptively. ResultsIn total, 55 participants completed the survey (16 experts and 39 members of patient organisations). The results demonstrate that users know se-atlas mainly through patient organisations and the German National Action League for People with Rare Diseases. Furthermore, the experts use se-atlas more frequently than members of patient organisations do. Regarding to user satisfaction, participants were satisfied when using se-atlas (scale 1-6, mean = 4.31, SD = 1.18). They rated se-atlas functions with an average between 3.82 and 4.4 (scale 1-6). Additionally, se-atlas functions were considered as important with an average between 3.11 and 3.75 (scale 1-4). With regard to usability, the website was rated with an overall SUS score of 67.1, whereas the results differ between the participants group (experts = 76.1, patient organisations = 63.1). Moreover, participants made suggestions, e.g. that more disease entries should be available and usability can be improved. ConclusionsThis study involved experts and members of patient organisations to assess the background and purpose, user satisfaction and usability when using se-atlas. Despite the promising results and first new implementations, further optimisations of the platform in terms of usability and various functionalities are necessary.

Sign in / Sign up

Export Citation Format

Share Document