Caroline Huyard
Biographic Data
| ID | 212523 |
|---|---|
| NAME | Caroline Huyard |
| GIVEN NAMES | Caroline |
| FAMILY NAME | Huyard |
| SIGNATURE | HUYARD C |
| AFFILIATIONS | Goethe University Frankfurt |
| ORCID | 0000-0002-7454-7039 |
| VERIFIED | Yes |
| TOTAL WORKS | 9 |
| TOTAL CITATIONS | 46 |
| AUTHOR COUNT | 9 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 2008 |
| LATEST PUBLICATION YEAR | 2020 |
| H-INDEX | 3 |
Sustainable food education
Contributing to more sustainable diets is a major challenge for contemporary environmental education. It implies an increase in the share of plant-based foods and of home-cooked meals. Awareness of this is widespread but taking concrete action is not easy. What competences does it call for? To identify them, we proposed an 8-month training course to groups of young adults in France. Their consumption of vegetables and the competences they mobiliz…
When patients' invisible work becomes visible
While the biographical dimensions of chronic illness have been well researched, the concrete dimensions of patients' work have not been as thoroughly investigated as yet. With the growing concern for self-management, such research would be timely. This study aims to better understand patients' invisible work by highlighting the causes of unintentional non-adherence as well as strategies for adherence. For this purpose, it defines medical treatmen…
Intentional Nonadherence as a Means to Exert Control
Medication adherence is a major issue for patients with a chronic illness, who sometimes rationally choose temporary nonadherence. This study aims at better understanding intentional nonadherence and especially why it seems to fluctuate over time. It is based on 48 semi-structured interviews conducted in a hospital in the Netherlands with patients who had been prescribed a medication for a chronic disease for at least 1 year, and who had either t…
Pourquoi s'associer ? Quatre motifs d'entrée dans un collectif dans les associations de maladies rares
Les associations ont pour particularité de reposer sur l'adhésion volontaire de personnes qui forment un collectif avec des visées communes. De ce point de vue, les déterminants et les mécanismes du passage de l'individuel au collectif sont une question cruciale, qui a été jusqu'à présent largement négligée. Cette enquête propose une approche théorique de l'association comme acte, à partir de la notion de bien, courante en économie institutionnel…
Quand la puissance publique fait surgir et équipe une mobilisation protestataire
Alors que nombre de travaux s'interrogent sur la capacité des mobilisations dites de malades à influencer les politiques de santé, l'invention des maladies rares oblige à saisir l'élaboration conjointe d'une cause et d'une action publique. Une décision de la puissance publique américaine crée un « public », dont les personnes atteintes d'affections peu fréquentes sont une composante, qui s'organise. En réponse à leur activisme, l'administration a…
What, if anything, is specific about having a rare disorder? Patients’ judgements on being ill and being rare
Background Growing efforts are made to improve the situation of persons with rare diseases, but the specific nature of these disorders remains unclear. Objectives To establish (1) to what extent people with rare disorders think that their disease’s rarity causes particular difficulties, (2) to what extent these difficulties relate to other causes than rarity (i.e. other characteristics of the disease or other components of the illness experience)…
Who rules rare disease associations? A framework to understand their action
The inner structure of so-called 'patients' organisations' has been accorded relatively little attention with respect to their increasing role in the medical world. This comparative study in France of eight such organisations, matching six rare disorders, explores the issue of power and decision making through the description of the entities that make up the organisation (and especially which stakeholders are represented), their mutual relationsh…
How did uncommon disorders become 'rare diseases'? History of a boundary object
The category of 'rare diseases' has been in growing use in the fields of public health and patient advocacy for the past 15 years in Europe. In this socio-historical inquiry, I argue that this category, which appeared initially as a by-product of the orphan drug issue in the United States of America is a boundary object. As such, it has different specific local uses: a meaningless category for physicians, it relates to the patients' experience of…
Exploring One's Own Human Condition
Drawing on a sample of 11 interviews in France with adults affected by cystic fibrosis, and applying grounded-theory analysis, I describe illness-related learning processes in the case of persons affected by a genetic disorder with early onset. Three outcomes might be of interest to health professionals. First, the diagnosis of genetic disease does not imply that the patients consider themselves to be ill. The meaning of being affected by a genet…
How did uncommon disorders become 'rare diseases'? History of a boundary object
The category of 'rare diseases' has been in growing use in the fields of public health and patient advocacy for the past 15 years in Europe. In this socio-historical inquiry, I argue that this category, which appeared initially as a by-product of the orphan drug issue in the United States of America is a boundary object. As such, it has different specific local uses: a meaningless category for physicians, it relates to the patients' experience of…
When patients' invisible work becomes visible
While the biographical dimensions of chronic illness have been well researched, the concrete dimensions of patients' work have not been as thoroughly investigated as yet. With the growing concern for self-management, such research would be timely. This study aims to better understand patients' invisible work by highlighting the causes of unintentional non-adherence as well as strategies for adherence. For this purpose, it defines medical treatmen…
Who rules rare disease associations? A framework to understand their action
The inner structure of so-called 'patients' organisations' has been accorded relatively little attention with respect to their increasing role in the medical world. This comparative study in France of eight such organisations, matching six rare disorders, explores the issue of power and decision making through the description of the entities that make up the organisation (and especially which stakeholders are represented), their mutual relationsh…
Intentional Nonadherence as a Means to Exert Control
Medication adherence is a major issue for patients with a chronic illness, who sometimes rationally choose temporary nonadherence. This study aims at better understanding intentional nonadherence and especially why it seems to fluctuate over time. It is based on 48 semi-structured interviews conducted in a hospital in the Netherlands with patients who had been prescribed a medication for a chronic disease for at least 1 year, and who had either t…
Quand la puissance publique fait surgir et équipe une mobilisation protestataire
Alors que nombre de travaux s'interrogent sur la capacité des mobilisations dites de malades à influencer les politiques de santé, l'invention des maladies rares oblige à saisir l'élaboration conjointe d'une cause et d'une action publique. Une décision de la puissance publique américaine crée un « public », dont les personnes atteintes d'affections peu fréquentes sont une composante, qui s'organise. En réponse à leur activisme, l'administration a…
Exploring One's Own Human Condition
Drawing on a sample of 11 interviews in France with adults affected by cystic fibrosis, and applying grounded-theory analysis, I describe illness-related learning processes in the case of persons affected by a genetic disorder with early onset. Three outcomes might be of interest to health professionals. First, the diagnosis of genetic disease does not imply that the patients consider themselves to be ill. The meaning of being affected by a genet…
Pourquoi s'associer ? Quatre motifs d'entrée dans un collectif dans les associations de maladies rares
Les associations ont pour particularité de reposer sur l'adhésion volontaire de personnes qui forment un collectif avec des visées communes. De ce point de vue, les déterminants et les mécanismes du passage de l'individuel au collectif sont une question cruciale, qui a été jusqu'à présent largement négligée. Cette enquête propose une approche théorique de l'association comme acte, à partir de la notion de bien, courante en économie institutionnel…
Exploring One's Own Human Condition
Drawing on a sample of 11 interviews in France with adults affected by cystic fibrosis, and applying grounded-theory analysis, I describe illness-related learning processes in the case of persons affected by a genetic disorder with early onset. Three outcomes might be of interest to health professionals. First, the diagnosis of genetic disease does not imply that the patients consider themselves to be ill. The meaning of being affected by a genet…
What, if anything, is specific about having a rare disorder? Patients’ judgements on being ill and being rare
Background Growing efforts are made to improve the situation of persons with rare diseases, but the specific nature of these disorders remains unclear. Objectives To establish (1) to what extent people with rare disorders think that their disease’s rarity causes particular difficulties, (2) to what extent these difficulties relate to other causes than rarity (i.e. other characteristics of the disease or other components of the illness experience)…
Who rules rare disease associations? A framework to understand their action
The inner structure of so-called 'patients' organisations' has been accorded relatively little attention with respect to their increasing role in the medical world. This comparative study in France of eight such organisations, matching six rare disorders, explores the issue of power and decision making through the description of the entities that make up the organisation (and especially which stakeholders are represented), their mutual relationsh…
How did uncommon disorders become 'rare diseases'? History of a boundary object
The category of 'rare diseases' has been in growing use in the fields of public health and patient advocacy for the past 15 years in Europe. In this socio-historical inquiry, I argue that this category, which appeared initially as a by-product of the orphan drug issue in the United States of America is a boundary object. As such, it has different specific local uses: a meaningless category for physicians, it relates to the patients' experience of…
Quand la puissance publique fait surgir et équipe une mobilisation protestataire
Alors que nombre de travaux s'interrogent sur la capacité des mobilisations dites de malades à influencer les politiques de santé, l'invention des maladies rares oblige à saisir l'élaboration conjointe d'une cause et d'une action publique. Une décision de la puissance publique américaine crée un « public », dont les personnes atteintes d'affections peu fréquentes sont une composante, qui s'organise. En réponse à leur activisme, l'administration a…
Pourquoi s'associer ? Quatre motifs d'entrée dans un collectif dans les associations de maladies rares
Les associations ont pour particularité de reposer sur l'adhésion volontaire de personnes qui forment un collectif avec des visées communes. De ce point de vue, les déterminants et les mécanismes du passage de l'individuel au collectif sont une question cruciale, qui a été jusqu'à présent largement négligée. Cette enquête propose une approche théorique de l'association comme acte, à partir de la notion de bien, courante en économie institutionnel…
Intentional Nonadherence as a Means to Exert Control
Medication adherence is a major issue for patients with a chronic illness, who sometimes rationally choose temporary nonadherence. This study aims at better understanding intentional nonadherence and especially why it seems to fluctuate over time. It is based on 48 semi-structured interviews conducted in a hospital in the Netherlands with patients who had been prescribed a medication for a chronic disease for at least 1 year, and who had either t…
When patients' invisible work becomes visible
While the biographical dimensions of chronic illness have been well researched, the concrete dimensions of patients' work have not been as thoroughly investigated as yet. With the growing concern for self-management, such research would be timely. This study aims to better understand patients' invisible work by highlighting the causes of unintentional non-adherence as well as strategies for adherence. For this purpose, it defines medical treatmen…
Sustainable food education
Contributing to more sustainable diets is a major challenge for contemporary environmental education. It implies an increase in the share of plant-based foods and of home-cooked meals. Awareness of this is widespread but taking concrete action is not easy. What competences does it call for? To identify them, we proposed an 8-month training course to groups of young adults in France. Their consumption of vegetables and the competences they mobiliz…
Medicine (6 works) · Political science (4 works) · Psychology (4 works) · Disease (3 works) · Genomics and Rare Diseases (3 works) · Sociology (3 works) · Computer Science (2 works) · Global Public Health Policies and Epidemiology (2 works) · Health care (2 works) · Health professionals (2 works)