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De l’éducation thérapeutique du patient à la littératie en santé. Problématisation socio-anthropologique d’objets didactiques contextualisés

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De l’éducation thérapeutique du patient à la littératie en santé. Problématisation socio-anthropologique d’objets didactiques contextualisés

Abstract

From therapeutic education to health literacy Sociological problematization of contextualized didactic objects The therapeutic education provided to persons with chronic illness was analyzed as a transitional field at the crossroads of several worlds: the health care providers and the patients, the context of the learning setting and the "ordinary" context of the individuals, the biomedical and the social sciences. This original scientific path settled in this intermediate field, questioning a two decades work in Reunion (Indian Ocean) and in several African countries. Through a constructive, dynamic and collaborative approach from patient education to health literacy, new opportunities to the scientific community were elaborated for connecting and making dialogue these epistemologies and praxeologies a priori irreductible. The target was to go further with the theoretical frameworks mobilized, with methodologies, results and their scientific contextualization in order to improve potentials for social integration and ethical intervention. Based on contextualized researches that questioned three areas (here, health care’s professional training, the hospital, patients’ home), results showed how in these specific field (chronic diseases) and context (Reunion), the heuristic and transformative potential of the Educational Sciences yielded a valuable contribution to knowledge and intervention. The crossed contributions of sociology, didactics, language sciences and health anthropology were conveyed so as to inform learning settings about the educational process challenging the health literacy development. Inspired by French and international contributions, this research project opens further perspectives for partnership developments in connection with the ICARE laboratory (Reunion Island) and close collaborations with the UNIRéS French network (Universities Network for Health Education). Key-words : Therapeutic education – Health literacy – Reunion Island – Chronic illness - Contextualization
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... Menée selon une perspective qualitative en France, à La Réunion, l'étude ethnosociologique associée à l'essai clinique ERMIÉS a permis d'analyser de façon fine les En lien avec la recherche qualitative dont elle est issue, la grille Diabète Littératie Santé (DLS) est donc un outil qui permet d'approcher les « niveaux » de littératie en santé des individus, y compris dans leur dynamique (Balcou- Debussche, 2016Debussche, , 2016a. A travers huit variables signifiantes, elle rend compte de la complexité de la gestion de la maladie au quotidien. ...
... Différents contextes de la personne malade chronique(Balcou-Debussche, 2016). ...
Thesis
Inscrite dans les Sciences de l’éducation et de la formation, notre recherche doctorale vise à comprendre et identifier les atouts et difficultés en termes d’accès à l’information, à la compréhension et à la prise de décisions en santé. Elle interroge l’évolution en matière de littératie en santé (LS) chez des femmes qui bénéficient de programmes éducatifs dans le cadre d’une grossesse associée à un diabète gestationnel (DG). La LS de ces femmes est considérée comme un indicateur pouvant évoluer dans le temps en fonction : 1- des événements de littératie qui viennent ponctuer la grossesse, mais aussi au-delà ; 2- de la construction et de la mobilisation des savoirs formels transmis à l’oral et/ou à l’écrit lors des séances d’éducation thérapeutique du patient (ETP) ; 3- des savoirs informels que les femmes collectent tout au long de leur grossesse en prenant en compte leur « contexte ordinaire ». Sur le plan méthodologique, une articulation entre données quantitatives et qualitatives permet la mise en dialogue des discours, des « niveaux » de LS et des scores obtenus par questionnaire. Construit autour de 3 temps (T1, T2 et T3), notre recueil de données mobilise différents outils de collecte : 1- T1 (n=24 femmes rencontrées) : au moment de la première séance d’ETP – à l’hôpital ; 2- T2 (n=12) : au moins 15 jours après T1 – à l’hôpital ; 3- T3 (n =10) : au moins 1 mois après l’accouchement – à domicile. L’analyse de ces données documente les variations d’expériences de la maternité de ces femmes et leurs influences sur les rapports à la maladie, ainsi que les liens entre les parcours de santé et les parcours éducatifs. Nos résultats montrent une évolution de la LS durant le temps de la grossesse, en lien avec des événements qui mettent en jeu des savoirs formels, informels et d’expérience.
... Furthermore, the relationship between the practice of a sport and income level constitutes a bell curve, with a greater proportion of individuals occupying middle-income categories involved in sport. The Kannari study in Martinique (Castetbon et al., 2016a, 2016b revealed that the level of physical activity was not associated with either the level of education or employment status, or the fact of receiving RSA (Colombet, to be published). ...
... The Entred study done in 2007-2010 (Ndong et al., 2010) on the DROM (except Mayotte) reveals a lack of consultations and follow-up examinations while the Rédia 2 study showed the importance for health of an early diagnosis of particularly diabetes, as newly screened patients faced more uncontrolled risk factors for complications (Lenclume and Favier, 2012). In La Réunion the qualitative studies (Balcou-Debussche, 2006, 2016a, 2016b and the preliminary data from the study on treatment plans for patients with diabetes based on information from the national inter-scheme information system for health insurance (Sniiram) and the information system medical orientation programme (PMSI) (Chan Wai Nam et al., 2018) clearly show breaks in the treatment plans, particularly among the most disadvantaged: discontinuation of follow-up and treatment after the 1 st phase of diagnosis and treatment by the treating doctor, early onset of complications with "re-discovery" of diabetes, the important role of the GP in determining the relevance of the treatment plan and the hospital as expert point of reference (Balcou-Debussche and Debussche, 2009). ...
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This summary report is based on the referenced contributions of scientists and professionals gathered together over a period of several months in a multidisciplinary committee (representing epidemiology, public health, nutrition, economics and sociology). It reports on the current state of knowledge regarding determining factors affecting food and nutrition in the French overseas regions, with the aim of clarifying public policy in this regard. Apart from their varying geographic characteristics, Guadeloupe, French Guiana, Martinique, Mayotte and La Réunion have experienced more recent demographic, social and economic transformations than mainland France, each in its own specific way. The evolution of these French overseas departments and regions (referred to here by the French acronym DROM) occurs rapidly, as do transitions in their food-related and nutritional situations1, which operate at more or less advanced stages of development depending on the territory.
... Understanding the complex interplay of self-care practices in diabetes in the light of HL skills and resources has been seldom explored. [26][27][28][29] Qualitative studies are needed to better understand the capacity and resources of individuals to implement health-relevant and meaningful practices and to adapt them to the strengths and limitations of the environments in which they are implemented. This study aimed to qualitatively analyse HL in its multiple dimensions in relation to self-care practices, in the context of structured care in four ambulatory diabetes care facilities in La Réunion. ...
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Objectives Considering health literacy needs is a key component of health services responsiveness to diabetes self-management among vulnerable individuals. The purpose of this qualitative study was to provide a detailed analysis of the health literacy of people with type 2 diabetes in relation to their daily self-care practices. Design Nested qualitative study in the ERMIES randomised controlled trial testing a 2-year structured care in type 2 diabetes. First round of semidirected interviews at the beginning of the trial with thematic analysis of content. Second round at the completion with directed interviews guided by the first round’s themes together with Health Literacy Questionnaire. Settings Interviews conducted at home. Participants Forty-four (31 females/13 males, 30–79 years, glycated haemoglobin (HbA1c)≥7.5%) consecutive participants out of 100 recruited in the ERMIES trial from 4 diabetology outpatient settings (Reunion Island). Forty-two respondents to the second round interviews. Results Three poles structured into eight themes characterised practices in context: health knowledge, disease management, expertise and social support. The relationships of participants in each of the eight themes were differentiated, ranging from functional to interactive and critical. Treatment and follow-up were essentially functional, while diet and exercise remained more interactive. Social support and relationship to health professionals were important determinants of disease management. Conclusions Treatment management and disease monitoring remain primarily the job of health professionals, as opposed to diet, physical activity and social support being part of ordinary practice. Decision-making, as a shared social task, as well as resources for participation in health services, should be considered for relevant interventions in type 2 diabetes. Trial registration number NCT01425866 .
... Nor is it only about describing the health literacy of individuals or population groups in an epidemiological way. Moving conceptually from patient education to health literacy allows us to move further away from a 'what we think patients are lacking', ie a deficit approach, to one that is strength-based and 'helping to gather the pieces to move forward' [14]. From a public health perspective, there is a need to consider the responsiveness and adaptation of systems, services and professionals to a community's health literacy needs, especially for the most vulnerable. ...
Article
Diabetes burden is a major long term challenge for individuals, communities, services and systems. Addressing health literacy is a key underpinning issue of health inequities and to inform services and policies in generating appropriate responses to the needs of people with diabetes. The concept of health literacy has evolved from basic functional skills in reading and numeracy to a multidimensional one encompassing the abilities and resources regarding access and accessibility to health information and services in order to maintain good health taking into account the various contexts of individuals. The importance of health literacy is pertinent given the current need to integrate the growing digital invasion and the urgent need for informed and accessible interactions with media and services (eHealth literacy). Consequently, health care services and providers, as well as policies and decision makers have to recognise and cope with diverse health literacy needs, especially for the most vulnerable. Several promising development projects are on-going in Europe and worldwide to address health (and eHealth) literacy for the co-design and scaling-up of potentially sustainable interventions and policies regarding the prevention and the management of diabetes.
... The HL was originally introduced in the 1970s to assess individuals' skills in reading, understanding health terms or expressions, and numeracy, primarily through functional tests. Later, the concept developed and expanded to include many factors that affect an individual's ability to obtain, understand and use health information and health services [2,3]. Health and social policies have shown that HL is a key determinant of an individual's ability to manage health optimally and of the ability of a health system to ensure equitable access to and use of services [4][5][6]. ...
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Background Health literacy refers to the skills and resources needed to find, understand and use information and services to maintain good health. Health-related quality of life refers to a person's perception of his or her health status, i.e., physical, social and mental well-being. The objective was to describe health literacy and analyze the relationships with quality of life and the socio-demographic and clinical characteristics of people with type 2 diabetes in Ouagadougou, Burkina Faso. Methods This cross-sectional study involved 175 patients with type 2 diabetes recruited from the specialized departments of 5 hospitals. Health literacy was assessed by the multidimensional Health Literacy Questionnaire (HLQ) and quality of life by the EQ-5D-5 L (EuroQol, 5 dimensions and 5 levels). Standardized differences in means (effect size) were used to describe the magnitude of differences between subgroups. Results 80.5% of patients in the sample were under 60 years of age. There were more women (70.3%) than men, 77.7% of patients had less than a high school education and 57.7% were employed. The most significant health literacy difficulties were found for the scales "Appraisal of health information" (mean = 2.57 [2.48 - 2.66]), "Navigating the health care system" (mean = 2.95 [2.84 - 3.06]), and “Ability to find good health information” (mean=2.96 [2.84 – 3.09]). In terms of quality of life, the "Pain/discomfort" dimension was the most impaired. Small to large standardized differences were observed for several HLQ scales according to gender, education level, employment status, family history status, length of time with diabetes and blood glucose level. There was a significant correlation between the HL and HRQoL scales (r from 0.31 to 0.49). Conclusion This study objectively assessed the diversity of health literacy profiles on all scales of HLQ according to the socio-demographic status and specific characteristics of patients with type 2 diabetes. Building on the diverse health literacy needs can be a strategy to help reduce inequalities and improve quality of life in type 2 diabetes.
... Critical literacy refers to skills that can be applied to analyse critical information and adapt to better control life situations. Understanding the complex interplay of self-care practices in diabetes in the light of HL skills and resources has been seldom explored [25,26]. Qualitative studies are needed to better understand the capacity of individuals to implement health-relevant and meaningful practices and to adapt them to the strengths and limitations of the environments in which they are implemented. ...
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Objective Considering health literacy is a key element for health service responsiveness to self-management needs in diabetes. This qualitative study aimed to provide a detailed analysis of the health literacy of people with type 2 diabetes in relation to their daily self-care practices. Methods Interviews (n=86) were conducted as part of the qualitative study ERMIES-ethnosocio, at the beginning and at the end of a structured educational care. The interviews focused on food practices, exercise, treatment, relationship to health information and professionals. Results Three poles structured into eight themes characterized practices in context: health knowledge, disease management, expertise and social support. The relationships of participants in each of the eight themes were differentiated, ranging from functional to interactive and critical. Treatment and follow-up were essentially functional, while diet and exercise remained more interactive. Social support and relationship to health professionals were important determinants of disease management. Conclusion and Practice implications Treatment management and disease monitoring remain primarily the job of health professionals, as opposed to diet, physical activity and social support being part of ordinary practice. Decision-making, as a shared social task, as well as resources for participation in health services, should be considered for relevant interventions in type 2 diabetes.
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Les départements d’Outre-mer se caractérisent, par rapport à la France hexagonale et entre eux, non seulement par leurs contextes démographiques, socio-économiques, culturels, et géographiques, mais aussi par les offres et services de santé et de soins et leur accessibilité. D’un côté les Antilles, Guadeloupe et Martinique, avec une population vieillissante, et de l’autre la Guyane et Mayotte au contraire en transition démographique tardive (respectivement 40 et 50 % de moins de 20 ans en 2015). La Guyane et Mayotte sont les départements les plus jeunes avec La Réunion, encore en croissance démographique, et devraient le rester jusqu’en 2040. Les disparités d’offre et de recours, de comportements de recours et ressources, de renoncements aux soins dans les différents départements d’Outre-mer sont importantes à examiner par rapport aux pathologies nutritionnelles ; ce sont de potentiels facteurs d’inégalités de santé.
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