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1.
Res Involv Engagem ; 6: 50, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32905210

RESUMO

BACKGROUND AND OBJECTIVES: In France, following the passing of a 2002 law, service user representatives (SURs) are part of hospital committees in charge of care quality and safety issues. Ten service user representatives (SURs) were recruited and trained as "peer researchers" to participate in all phases of a study aimed at outlining how patients experience hospital safety. This article aims to describe the study protocol and how peer researchers training was designed and implemented to prepare them to drive a qualitative and quantitative research. It also examines the challenges related to collaborative research and how these were resolved. METHODS: The way our training was conceived belongs to the field of "design-based research", known for its pragmatic and collaborative scope, in which viewpoints of all participants are included. Our training was therefore based on peer researchers and research sponsors expectations, as well as on recommendations of the literature. RESULTS: A 45-h training was held. While the program was meant to train peer researchers to respect scientific norms, it also aimed to improve their sense of self-legitimacy as they navigated their new role. Peer researchers were particularly eager to understand meaning behind the instructions, especially in the field of ethical and scientific norms. Various challenges occurred related to project organization, recruitment and peer researchers involvement. Some issues were overcome by learning how to share control over the research process. CONCLUSION: This experiment highlights the importance of a training program's duration and quality to prepare SURs for their roles as peer investigators and to create a group dynamic around a research project, even with SURs familiar with patient involvement and our research theme (safety issues). Trainers overcame hurdles by being adaptive and by using educational approaches. They also learned to include trainees' input, even when it forced them to reconsider their own assumptions.

2.
Transfus Clin Biol ; 24(2): 76-82, 2017 Jun.
Artigo em Francês | MEDLINE | ID: mdl-28476210

RESUMO

The not-for-profit issue has been debated in November 2016 in Paris; this issue is one of the four canonical pillars of ethical blood donation. It is intimately bound to benevolence though it is distinct, as not-for-profit calls for institutions while benevolence calls for individuals. It is indeed intended that voluntary blood donors do not benefit from their donation and are thus non-remunerated. Not-for-profit is essential since it refers to the public character of blood as a putative public resource aimed at being shared as a tribute of solidarity. A central question however is linked to the capacity- or not -of public sectors to ensure that blood components are universally available, with special mention to plasma derived drugs, without the contribution of the for profit, private sector.


Assuntos
Beneficência , Doadores de Sangue/ética , Transfusão de Sangue/ética , Academias e Institutos , França , Humanos , Motivação
3.
World J Microbiol Biotechnol ; 31(3): 461-75, 2015 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-25586509

RESUMO

The Vibrio splendidus clade has previously been associated with epidemic outbreaks of various aquatic animals, as in the case of the cupped oyster, Crassostrea gigas. To investigate whether involved strains could present a clonal origin and to identify possible alternative background carriage animals or zooplankton, a large epidemiological survey was conducted on isolates of the splendidus clade. For this purpose, Vibrio strains were isolated from various samples including oysters, mussels, sediments, zooplankton, and sea water on the basis of a North/South gradient of the European sea water zone (Ireland, The Netherlands, France, Italy, and Spain). A total of 435 isolates were successfully associated to the V. splendidus clade using real time polymerase chain reaction with 16S specific primers and probes. A multiple-locus variable-number tandem-repeat analysis (VNTR) was conducted on all isolates based on a multiplex PCR-VNTR with a set of primer pairs designed from the V. tasmaniensis LGP32 genome. Preliminary validation of the primers on a set of collection strains from the V. splendidus clade confirmed that the former V. splendidus-related LGP32 and relative strains were related to V. tasmaniensis rather than to the type strain V. splendidus LMG 4042. The VNTR analysis was then successfully conducted on 335 isolates which led to the characterization of 87 different profiles. Our results showed that (1) the high diversity of VNTR did not enlighten significant correlation between a specific pattern and the origin of collected samples. However, populations isolated from animal samples tend to differ from those of the background environment; (2) oyster mortality events could not be linked to the clonal proliferation of a particular VNTR type. However, few different patterns seemed successively associated with samples collected during peaks of oyster's mortality. (3) Finally, no correlation could be seen between specific VNTR patterns and sequence phylogeny of the virulence factors vsm and ompU that were detected among strains isolated during as well as outside mortality events. These results, combined with incongruence observed between the ompU and vsm phylogenetic trees, suggested both large diffusion of strains and massive lateral gene transfer within the V. splendidus clade.


Assuntos
Organismos Aquáticos/microbiologia , Variação Genética , Tipagem Molecular , Alimentos Marinhos/microbiologia , Vibrio/genética , Vibrio/isolamento & purificação , Fatores de Virulência/genética , Animais , Análise por Conglomerados , DNA Ribossômico/química , DNA Ribossômico/genética , Europa (Continente) , Genótipo , Repetições Minissatélites , Filogenia , RNA Ribossômico 16S/genética , Reação em Cadeia da Polimerase em Tempo Real , Água do Mar/microbiologia , Vibrio/classificação
4.
Transfus Clin Biol ; 21(2): 66-76, 2014 May.
Artigo em Francês | MEDLINE | ID: mdl-24814818

RESUMO

This paper brings together the abstracts and proceedings of a seminar held on the topic of "ethics and transfusion", October 15, 2013 at the National Institute of Blood Transfusion, Paris.


Assuntos
Doadores de Sangue/ética , Transfusão de Sangue/ética , Ética Médica , Congressos como Assunto , Humanos
5.
Haemophilia ; 16(3): 447-54, 2010 May.
Artigo em Inglês | MEDLINE | ID: mdl-20088955

RESUMO

The activities of 'expert patients' or 'patient tutors', who help educate their peers, are gaining recognition in the health care system. This study investigates the role played by such patients in therapeutic education programmes organized by caregivers to validate the role of patients in implementing the therapeutic education of haemophilic patients and to define the skills required for such activities. This study employs the consensus methodology recommended by France's National Authority for Health. The working group includes seven caregivers from Hemophiliac Treatment Centers (HTCs) and three patients from the French Association of Hemophiliacs (FAH). The role of patients in haemophilia education is recognized. Patients participating in the education of their peers are referred to as 'patient resources'. A patient resource should be an adult, a volunteer and live in the same region as his peers. Candidates are chosen by the FAH and the HTCs to serve based on their motivation to facilitate the education of other patients as well as on their psychological and pedagogical aptitudes. A patient resource participates in the conception and administration of therapeutic education programmes. He also mediates between the caregivers and the patients. He ensures that the patients understand the material and are able to apply their knowledge in daily life. His activities are governed by professional ethics. Seven categories of skills were defined, permitting the group to determine precisely which skills are required to function as a patient resource. Supervision of the patients is planned to reinforce reflexive practices in the patients. Evolution of the health care system has led patients to become involved in therapeutic education. This phenomenon calls for a framework to be developed and an evaluation of its eventual effects.


Assuntos
Hemofilia A/terapia , Hemofilia B/terapia , Educação de Pacientes como Assunto/métodos , Participação do Paciente , Consenso , França , Humanos , Grupo Associado , Papel (figurativo)
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