Sickle cell disease perceptions of caregivers, adolescent, and adult patients: Barriers and facilitators to medical care adherence.

AIMS: To 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. DESIGN: Qualitative explorative study, using semi-structured and life-experience interviews and manual inductive content analysis. METHODS: From 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. RESULTS: This 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. CONCLUSION: Care 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. IMPACT: Showing differences among caregivers, adult, and adolescent patient perceptions, this study impact future care practices. It revealed needs of intervention for adolescents.

[Acupuncture, animal magnetism, and French medical orthodoxy (1780-1830)]. / L'acupuncture et le magnétisme animal face à l'orthodoxie médicale française (1780-1830).

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).

Pediatric-Adult Care Transition: Perceptions of Adolescent and Young Adult Patients with Sickle Cell Disease and Their Healthcare Providers.

Introduction: The pediatric-adult care transition, which takes place during adolescence, is a high-risk period for medical care adherence in chronic diseases, this encompasses treatment adherence, attending medical consultations and following healthcare advice. Studying perceptions is needed to get a more comprehensive picture of this care transition and to propose interventions to address the gaps. The authors analyzed perceptions from patients and caregivers in adolescents with sickle cell disease. Although this is the first step to improving the actual care management, to our knowledge, no study has explored perceptions from healthcare providers and compared it to patients' perceptions. The purpose of this study was to provide an insight on the experience of adolescent and adult patients, pediatric and adult healthcare providers in the context of pediatric to adult care transition, and analyze those concerns in order to better understand medical care adherence and improve patient care. Material and Methods: Semi-structured interviews were conducted with adolescent and adult patients, as well as healthcare professionals (HCPs) in pediatric and adult departments. These interviews were audiotaped and transcribed before manual inductive content analysis. Results: A total of 15 adolescent patients, 10 adult patients, 9 pediatric HCPs and 13 adult HCPs - including 12 nurses - were interviewed. Patients and healthcare providers all agreed that the pediatric-adult care transition was poorly experienced. This was mainly due to various changes in habits, physicians, and care organization. Anticipating this transition and acquiring new skills both for patients and HCPs are essential steps for improving medical care adherence during this challenging pediatric-adult care transition. Conclusion: Propositions emerged from patients and healthcare providers to improve care and subsequently to improve medical care adherence in patients with sickle cell disease during and after the pediatric to adult care transition.

Patients' Perception of the Impact of Innovation on Hemophilia Care Management Organization: A Qualitative Study Protocol (INNOVHEMO Study).

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.

[Qualitative and collaborative research with cancer patients. Experience narratives of treatments for peritoneal carcinomatosis]. / Une recherche qualitative et collaborative auprès de patients atteints de cancer. Récits d'expérience des traitements de la carcinose péritonéale.

UNLABELLED: This CORCAN study is concerned with the way patients hospitalised for peritoneal carcinosis perceive surgical treatment and hyperthermic intraperitoneal chemotherapy (HIPEC). OBJECTIVES: (1) To identify and analyse, using concepts of social representation and accounts of the illness, characteristics of the way this treatment is experienced; (2) to inform doctors and healthcare workers about patients' representations, with a view to adjusting the treatment, the care and the information given to patients. METHODOLOGY: Fifty-eight directive and nondirective interviews were conducted longitudinally with 21 patients (13 women and 7 men) hospitalised for treatment by cell killing and HIPEC. RESULTS: Five important elements of concern were raised and discussed by the patients at different stages of the disease, then reported and discussed with the doctors and healthcare workers. These were patients' experiences of: the hyperthermic intraperitoneal chemotherapy (HIPEC), randomisation, intensive care, the effects of surgery on the digestive system, reorganising their diet, and returning home.