AimsTo provide an understanding of medical care adherence factors as reported by caregivers, adolescent, and adult patients with sickle cell disease and to analyse those concerns to identify barriers and facilitators about medical care adherence. Three topics influenced medical care adherence: the disease itself, therapeutics, and the healthcare system. This study will focus on the first topic.DesignQualitative explorative study, using semi‐structured and life‐experience interviews and manual inductive content analysis.MethodsFrom December 2016 – March 2017, one semi‐structured interview was conducted by a researcher with each of the 15 adolescent patients, 10 adult patients, and 19 caregivers in a French public hospital. Interviews were audio‐taped and transcribed before a content analysis. Perceptions were classified into barriers and facilitators of medical care adherence.ResultsThis article presents disease perceptions of caregivers and patients (adolescents and adults): daily management and social representations. These perceptions differ among parents, adolescent patients, and adult patients. However, all report important disease‐related “limitations” in their lives. The objective for adults (parents and patients) is to “live with the disease” and to achieve this, they find coping resources. Two major resources expressed by adults emerged: social resources (support from friends, patients’ association, and social visibility) and disease knowledge (theoretical and derived from experience). This is not the case of adolescents for whom social normality was the main concern.ConclusionCare management adherence is partly based on coping with the disease. Given the lower number of facilitators expressed by adolescents, it is essential to propose interventions in this population. It will help them cope with the disease and, consequently, optimize care management adherence.ImpactShowing differences among caregivers, adult, and adolescent patient perceptions, this study impact future care practices. It revealed needs of intervention for adolescents.
Background
New therapies provide a favorable evolution in the care management of persons with hemophilia. However, the impact of these new therapies on patient care organization remains to be determined. A qualitative study will be implemented to analyze patients’ perception regarding the impact of innovation on the organization of their care management. Secondary objectives will include refining specific factors related to persons with hemophilia (barriers or facilitators, especially the place of treatment) to consider within an organizational impact analysis.
Patients and Methods
Semi-structured individual interviews will be conducted via videoconferencing or by phone by two researchers using an interview guide. Participants will be recruited from the Rhône-Alpes region, in France. Physicians from two hemophilia treatment centers will identify eligible patients. Moreover, a call for volunteers will be launched by the Rhône-Alpes committee of the French hemophilia association. Interviews will be conducted with adult patients, adolescent patients or parents of a minor with hemophilia regularly treated prophylactically or on demand. Data analysis will be performed with NVivo
®
software. Each interview will be analyzed by two researchers using an inductive content analytic method.
Discussion
The INNOVHEMO study is an original study analyzing the way patients perceive the impact of an innovation on their care management organization. The resulting patient-specific factors, identified as barriers or facilitators, will need to be integrated into a more comprehensive analysis of the impact of innovation on care management organization.
This article analyses why the French phenomenon of acupuncture was confined to the 1810s–1820s. It argues that the French medical orthodoxy played a decisive role. First, we recount the history of the French reception of Japanese acupuncture from the late 17th century to the 1820s. Second, we go back to the animal magnetism trial to find some explanatory tools for the decline of French acupuncture. Third, we show that the oppositions to both therapies were not mere juxtapositions, but due to the growing strength of medical orthodoxy. Finally, we suggest a model of analysis of the French medical orthodoxy of the early 19th century through a set of multidimensional oppositions: anthropological (imagination/reason), epistemological (to heal/to explain), therapeutic (drug/fluid), nosological (organic disease/functional disease), and lastly, economic, moral and political oppositions (doctor/charlatan).
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