Individuals With the Rare Disease Pemphigus: A Quest for Diagnostic

2018 ◽  
Vol 29 (6) ◽  
pp. 889-899 ◽  
Author(s):  
Yannick Le Hénaff ◽  
Stéphane Héas ◽  
Pascal Joly
Keyword(s):  
Qualitative Study ◽  
Autoimmune Diseases ◽  
Rare Disease ◽  
Medical Professionals ◽  
Medical Work ◽  
Medical Tests

This qualitative study conducted in France of “individuals living with a pemphigus” (ILPs; N = 54) highlights the taxing diagnostic trajectory of those suffering from these rare autoimmune diseases. Beyond enduring a diagnostic period that may prove long, during their numerous medical appointments, these individuals internalize the expectations of the medical professionals who are treating them. In some cases, numerous inconclusive medical tests and, at times, a doctor’s condescension may push the patient toward a process of renunciation. This article relates the ILPs’ critiques of the medical work conducted during the trying diagnostic period.

Effective provider-patient communication of a rare disease diagnosis: A qualitative study of people diagnosed with schwannomatosis

2020 ◽  
Author(s):  
Vanessa L. Merker ◽  
Scott R. Plotkin ◽  
Martin P. Charns ◽  
Mark Meterko ◽  
Justin T. Jordan ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Rare Disease ◽  
Disease Diagnosis ◽  
Patient Communication

scholarly journals Barriers to making recommendations about medical tests: a qualitative study of European guideline developers

BMJ Open ◽  
2016 ◽  
Vol 6 (9) ◽  
pp. e010549 ◽  
Author(s):  
Gowri Gopalakrishna ◽  
Mariska M G Leeflang ◽  
Clare Davenport ◽  
Andrea Juliana Sanabria ◽  
Pablo Alonso-Coello ◽  
...  
Keyword(s):  
Qualitative Study ◽  
European Guideline ◽  
Medical Tests

scholarly journals Attitudes of General Practitioners Toward Prescription of Mobile Health Apps: Qualitative Study

10.2196/21795 ◽  
2021 ◽  
Vol 9 (3) ◽  
pp. e21795
Author(s):  
Aline Sarradon-Eck ◽  
Tiphanie Bouchez ◽  
Lola Auroy ◽  
Matthieu Schuers ◽  
David Darmon
Keyword(s):  
Qualitative Study ◽  
General Practitioners ◽  
Mobile Health ◽  
Data Privacy ◽  
Deep Understanding ◽  
Patient Data ◽  
Medical Decision ◽  
Medical Liability ◽  
Medical Work ◽  
Mhealth Apps

Background Mobile health (mHealth) apps are a potential means of empowering patients, especially in the case of multimorbidity, which complicates patients’ care needs. Previous studies have shown that general practitioners (GPs) have both expectations and concerns regarding patients’ use of mHealth apps that could impact their willingness to recommend the apps to patients. Objective The aim of this qualitative study is to investigate French GPs’ attitudes toward the prescription of mHealth apps or devices aimed toward patients by analyzing GPs’ perceptions and expectations of mHealth technologies. Methods A total of 36 GPs were interviewed individually (n=20) or in a discussion group (n=16). All participants were in private practice. A qualitative analysis of each interview and focus group was conducted using grounded theory analysis. Results Considering the value assigned to mHealth apps by participants and their willingness or resistance to prescribe them, 3 groups were defined based on the attitudes or positions adopted by GPs: digital engagement (favorable attitude; mHealth apps are perceived as additional resources and complementary tools that facilitate the medical work, the follow-up care, and the monitoring of patients; and apps increase patients’ compliance and empowerment); patient protection (related to the management of patient care and fear of risks for patients, concerns about patient data privacy and security, doubt about the usefulness for empowering patients, standardization of the medical decision process, overmedicalization, risks for individual freedom, and increasing social inequalities in health); doctor protection (fear of additional tasks and burden, doubt about the actionability of patient-gathered health data, risk for medical liability, dehumanization of the patient-doctor relationship, fear of increased drug prescription, and commodification of patient data). Conclusions A deep understanding of both the expectations and fears of GPs is essential to motivate them to recommend mHealth apps to their patients. The results of this study show the need to provide appropriate education and training to enhance GPs’ digital skills. Certification of the apps by an independent authority should be encouraged to reassure physicians about ethical and data security issues. Our results highlight the need to overcome technical issues such as interoperability between data collection and medical records to limit the disruption of medical work because of data flow.

scholarly journals Risk, uncertainty and medical practice: changes in the medical professions following disaster

2020 ◽  
Vol 16 (2) ◽  
pp. 285-303
Author(s):  
Sudeepa Abeysinghe ◽  
Claire Leppold ◽  
Akihiko Ozaki ◽  
Mariko Morita
Keyword(s):  
Medical Practice ◽  
Radiation Risk ◽  
Medical Professionals ◽  
Structured Interviews ◽  
Medical Work ◽  
Medical Expertise ◽  
Professional Boundaries ◽  
And Shifts ◽  
The Impact ◽  
The Way

Risk and uncertainty can destabilise and reconstruct the relationships between medicine, policy and publics. Through semi-structured interviews with medical staff following the Fukushima 3.11 Disaster, this paper demonstrates the way in which disruption (caused by disaster), coupled with uncertainty (in this case, around radiation risk) can serve to transform medical practices. After Fukushima, a deficit in publicly-trusted approaches to disaster management meant that the role and status of key medical professionals was transformed. This reorganisation of medical work included the development of new forms of expertise, the stretching of expertise beyond previously well-defined professional boundaries, and shifts in the way in which medical professionals understand and interact with publics. These changes signified the rise of new relationships between the medical workers and their community, as well as adjustments in what were regarded as the boundaries of medical work. Given both the ubiquitous threat of disasters and calls for increased engagement between the medicine and the public, this case study provides insight into the forms which such engagements can take, especially when bound by conditions of uncertainty. The paper draws upon the theoretical literature around the impact of uncertainty on policy, and combines this with medical sociological literature on the nature of medical expertise. The paper examines the shifting of medical expertise towards mode 2 forms, and evidences the impact of a democratised science of risk on the roles and functions of medical practice.

The death of patients with terminal cancer: the distress experienced by their children and medical professionals who provide the children with support care

2016 ◽  
Vol 9 (2) ◽  
pp. 183-188 ◽  
Author(s):  
Hiroyuki Otani ◽  
Miwa Ozawa ◽  
Tatsuya Morita ◽  
Ayako Kawami ◽  
Sahana Sharma ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Terminally Ill ◽  
Local Communities ◽  
Medical Professionals ◽  
Terminal Cancer ◽  
Time Of Death ◽  
Grief Reaction ◽  
The Family ◽  
The Relationship ◽  
Depth Interviews

BackgroundFew studies have been conducted on the experiences of children of terminally ill patients or hospital-based medical professionals supporting such children.AimThis study explored distress among individuals whose parents died of cancer in childhood and among hospital-based medical professionals supporting such children.DesignA qualitative study.Setting/participantsThe sample was 12 adults whose parents had died of cancer in childhood and 20 hospital-based medical professionals supporting children of patients’ with terminal cancer. In-depth interviews were conducted, focusing on the distress experienced by the participants. The data were analysed thematically.ResultsAmong adults whose parents died of cancer in childhood, we identified themes related to the period before death (eg, concealing the parent's illness), the time of death (eg, alienation due to isolation from the parent), soon after death (eg, fear and shock evoked by the bizarre circumstances, regrets regarding the relationship with the deceased parent before death), several years thereafter (ie, distinctive reflection during adolescence, prompted by the parent's absence) and the present time (ie, unresolved feelings regarding losing the parent). We identified seven themes among the medical professionals (eg, lack of knowledge/experience with children, the family's attempts to shield the child from the reality of death, estrangement from the family once they leave the hospital).ConclusionsAn important finding of the study is that the participants’ grief reaction to their parents’ deaths during childhood was prolonged. Moreover, hospital medical professionals may find it difficult to directly support affected children. Comprehensive support involving organisations (eg, local communities) may be necessary for children who have lost a parent.

scholarly journals Occupational Health Services and the Socialization of the post-Fordist Employee

2012 ◽  
Vol 3 ◽  
Author(s):  
Christian Maravelias
Keyword(s):  
Qualitative Study ◽  
Occupational Health ◽  
Health Services ◽  
Occupational Health Services ◽  
Central Position ◽  
Active Lifestyle ◽  
Medical Tests ◽  
Health Coaches ◽  
Central Argument ◽  
Health Experts

There is a heightened interest in the health of employees among scholars, employers, legislators, and employees themselves. The concern for employees’ health is not a new phenomenon. It has held a central position in political and economic discourses throughout most of the twentieth century. The central argument of this article, however, is that the economic and political changes of the last three decades – the neo-liberal turn – have played a part in altering the very notion of health so that the healthy individual is now a person who not merely passes bio-medical tests, but a person who also leads a particular life and possesses particular skills, namely, those of the active, positive, and self-governing individual. By means of a qualitative study of the sector for occupational health services (OHSs) in Sweden, this article will show how an active lifestyle has become a defining criterion of health. Furthermore, it will describe how health thereby becomes a question of choice and responsibility and how the healthy employee comes across as morally superior to the unhealthy employee. In this connection, this article shows how health experts such as therapists, health coaches, physicians, and so on become important points of authority in the fashioning of the new healthy, active employee.

Engaging Participants in Rare Disease Research: A Qualitative Study of Duchenne Muscular Dystrophy

2016 ◽  
Vol 38 (6) ◽  
pp. 1474-1484.e2 ◽  
Author(s):  
Roxanna M. Bendixen ◽  
Lauren P. Morgenroth ◽  
Kristin L. Clinard
Keyword(s):  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Qualitative Study ◽  
Rare Disease ◽  
Disease Research
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