BackgroundThe development of end-of-life primary care is a socio-medical and ethical challenge. However, general practitioners (GPs) face many difficulties when initiating appropriate discussion on proactive shared palliative care. Anticipating palliative care is increasingly important given the ageing population and is an aim shared by many countries.We aimed to examine how French GPs approached and provided at-home palliative care. We inquired about their strategy for delivering care, and the skills and resources they used to devise new care strategies.MethodsTwenty-one GPs from the South of France recruited by phone according to their various experiences of palliative care agreed to participate. Semi-structured interview transcripts were examined using a phenomenological approach inspired by Grounded theory, and further studied with semiopragmatic analysis.ResultsOffering palliative care was perceived by GPs as a moral obligation. They felt vindicated in a process rooted in the paradigm values of their profession. This study results in two key findings: firstly, their patient-centred approach facilitated the anticipatory discussions of any potential event or intervention, which the GPs openly discussed with patients and their relatives; secondly, this approach contributed to build an “end-of-life project” meeting patients’ wishes and needs. The GPs all shared the idea that the end-of-life process required human presence and recommended that at-home care be coordinated and shared by multi-professional referring teams.ConclusionsThe main tenets of palliative care as provided by GPs are a patient-centred approach in the anticipatory discussion of potential events, personalized follow-up with referring multi-professional teams, and the collaborative design of an end-of-life project meeting the aspirations of the patient and his or her family. Consequently, coordination strategies involving specialized teams, GPs and families should be modelled according to the specificities of each care system.
Background Recent advances in the field of congenital heart disease (CHD) led to an improved prognosis of the patients and in consequence the growth of a new population: the grown up with congenital heart disease. Until recently, more than 50% of these patients were lost to follow up because of the lack of specialized structures. The critical moment is the transition between paediatric and adult unit. Therapeutic education is crucial to solve this issue by helping patients to become independent and responsible. The TRANSITION-CHD randomized trial aims to assess the impact of a transition education program on health-related quality of life (HRQoL) of adolescents and young adults with CHD. Methods Multicentre, randomised, controlled, parallel arm study in CHD patients aged from 13 to 25 years old. Patients will be randomised into 2 groups (education program vs. no intervention). The primary outcome is the change in self-reported HRQoL between baseline and 12-month follow-up. A total of 100 patients in each group is required to observe a significant increase of the overall HRQoL score of 7 ± 13.5 points (on 100) with a power of 80% and an alpha risk of 5%. The secondary outcomes are: clinical outcomes, cardiopulmonary exercise test parameters (peak VO2, VAT, VE/VCO2 slope), level of knowledge of the disease using the Leuven knowledge questionnaire for CHD, physical and psychological status. Discussion As the current research is opening on patient related outcomes, and as the level of proof in therapeutic education is still low, we sought to assess the efficacy of a therapeutic education program on HRQoL of CHD patients with a randomized trial. Trial registration This study was approved by the National Ethics Committee (South-Mediterranean IV 2016-A01681-50) and was registered on Clinicaltrials.gov (NCT03005626).
La multiplication des interventions non médicamenteuses (INM) et des doutes résiduels de leur efficacité imposent aujourd'hui de ne plus se cantonner à leur appellation générale et disciplinaire (psychothérapie, thérapie manuelle,complément alimentaire,activité physique adaptée, solution e-santé…) mais d'accéder à leur véritable contenu. Décrite de manière précise, chaque INM pourra être mieux évaluéep ar la science, surveillée par les professionnels et expliquéea up atient. Pour ce faire, il est nécessaire de construire une modélisation de l'ensemble des connaissances scientifiques et d'usage sous la formed 'une ontologie informatique. Cette ontologie des INM faciliteral es recherchesb ibliographiques, les statistiques d'usage et l'amélioration des bonnes pratiques. Une première version de cette classification internationale évolutiveest disponible sur le site Internet de la Plateforme universitaire CEPS en accès libre.
Dans le champ des Sciences Humaines et Sociales, l’analyse textuelle est une procédure essentielle des approches qualitatives. Notre objectif est de proposer une méthode sémiopragmatique inédite dans l’analyse de verbatims. Les écrits de CS Peirce, philosophe américain, père du pragmatisme, de la sémiotique et concepteur du raisonnement abductif en sont les fondements. Les procédures d’analyse se résument en 3 étapes : décrire et analyser le texte en y repérant les classes de signes élémentaires ; Ordonner les données empiriques en catégories de sens selon la logique des relations-signes ; Produire un sens global à partir de la catégorie-argument. Cette méthode apporte un moment formel à l’analyse en permettant une mise en ordre logique des catégories empiriques limitant le risque de biais d’interprétation liés à l’investigateur. Elle pourrait éclairer les zones d’ombre autour du moment interprétatif et du raisonnement sous-jacent, critique récurrente des approches qualitatives.
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