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Switch to: References
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Background Patients with unmet medical needs sometimes resort to non-standard treatment options, including the use of unapproved, investigational drugs in the context of clinical trials, compassionate use or named-patient programs. The views and experiences of patients with unmet medical needs regarding unapproved, investigational drugs have not yet been examined empirically. Methods In this qualitative study, exploratory interviews and focus groups were held with patients with chronic or life-threatening diseases, about topics related to non-standard treatment options, such as the search for (...) |
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This paper explores the potential and relevance of an innovative sociological research method known as the Imitation Game for research in health care. Whilst this method and its potential have until recently only been explored within sociology, there are many interesting and promising facets that may render this approach fruitful within the health care field, most notably to questions about the experiential knowledge or ‘expertise’ of chronically ill patients. The Imitation Game can be especially useful because it provides a way (...) |
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For the past several years patients have been expected to play a key role in their recovery. Self management and disease management have reached a hype status. Considering these recent trends what does this mean for the division of responsibilities between doctors and patients? What kind of role should healthcare providers play? With findings based on a qualitative research project of an innovative practice for people with Chronic Obstructive Pulmonary Disease (COPD) we reflect on these questions. In-depth interviews conducted with (...) |
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Currently, patients are expected to take control over their health and their life and act as independent users and consumers. Simultaneously, health care policy demands patients are expected to self manage their disease. This article critically questions whether this is a realistic expectation. The paper presents the auto-ethnographic narrative of the first author, which spans a period of 27 years, from 1985 to 2012. In total nine episodes were extracted from various notes, conversations and discussions in an iterative process. Each (...) |
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In this paper, we explore and discuss the use of the concept of being affected in biomedical decision making processes in Germany. The corresponding German term ‘Betroffenheit’ characterizes on the one hand a relation between a state of affairs and a person and on the other an emotional reaction that involves feelings like concern and empathy with the suffering of others. An example for the increasing relevance of being affected is the postulation of the participation of people with disabilities and (...) |
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The professional and institutional responsibility for handling genetic knowledge is well discussed; less attention has been paid to how lay people and particularly people who are affected by genetic diseases perceive and frame such responsibilities. In this exploratory study we qualitatively examine the attitudes of lay people, patients and relatives of patients in Germany and Israel towards genetic testing. These attitudes are further examined in the national context of Germany and Israel, which represent opposite regulatory approaches and bioethical debates concerning (...) |
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Patient-centeredness can be considered a popular, and at the same time “fuzzy”, concept. Scientists have proposed different definitions and models. The present article studies scientific publications that discuss the meaning of patient-centeredness to identify different “discourses” of patient-centeredness. Three discourses are presented; the first is labelled as “caring for patients”, the second as “empowering patients” and the third as “being responsive”. Each of these discourses has different things to say about the why of patient-centeredness; the patient’s identity; the role of (...) |
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In Dutch healthcare policy patients are seen as informed, autonomous experts and active decision makers with control over their illness and care. Healthcare professionals are expected to operate as providers of information. The purpose of this article is to argue that the consumerist approach of the patient–professional relationship is not a productive way to envision the patient–professional relationship. We argue that an interpretive/deliberative model is a more productive way to envision this relationship, especially in the care for people with a (...) |
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