La trajectoire des enfants inclus dans la recherche : une expérience en termes de ruptures et de continuités
This article explores the consequences for families whose children are included in a research protocol in the context of precision medicine development. While the trajectory of children with advanced cancers is part of a series of bifurcations related to the different therapeutic choices proposed an...
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Association Anthropologie Médicale Appliquée au Développement et à la Santé
2021
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oai:doaj.org-article:6ab3b436a6a54b4a84a670a3e77a0d352021-12-02T10:49:22ZLa trajectoire des enfants inclus dans la recherche : une expérience en termes de ruptures et de continuités2111-502810.4000/anthropologiesante.10108https://doaj.org/article/6ab3b436a6a54b4a84a670a3e77a0d352021-11-01T00:00:00Zhttp://journals.openedition.org/anthropologiesante/10108https://doaj.org/toc/2111-5028This article explores the consequences for families whose children are included in a research protocol in the context of precision medicine development. While the trajectory of children with advanced cancers is part of a series of bifurcations related to the different therapeutic choices proposed and their organizational consequences, these bifurcations are not necessarily experienced as ruptures by the families. The experience of parents and children is shaped by their understanding of what clinical research is about, but also by the organizational, economic, or emotional resources that allow them to re-establish continuity in a disrupted daily life. This search for continuity persists during the end-of-life phase of the child’s life, even if the child’s death is a major biographical rupture for the whole family.Solenne CarofSylvain BesleAssociation Anthropologie Médicale Appliquée au Développement et à la Santéarticlecancerchildrenfamilydisease trajectoriesexperiencesFranceAnthropologyGN1-890FRAnthropologie & Santé, Vol 23 (2021) |
| institution |
DOAJ |
| collection |
DOAJ |
| language |
FR |
| topic |
cancer children family disease trajectories experiences France Anthropology GN1-890 |
| spellingShingle |
cancer children family disease trajectories experiences France Anthropology GN1-890 Solenne Carof Sylvain Besle La trajectoire des enfants inclus dans la recherche : une expérience en termes de ruptures et de continuités |
| description |
This article explores the consequences for families whose children are included in a research protocol in the context of precision medicine development. While the trajectory of children with advanced cancers is part of a series of bifurcations related to the different therapeutic choices proposed and their organizational consequences, these bifurcations are not necessarily experienced as ruptures by the families. The experience of parents and children is shaped by their understanding of what clinical research is about, but also by the organizational, economic, or emotional resources that allow them to re-establish continuity in a disrupted daily life. This search for continuity persists during the end-of-life phase of the child’s life, even if the child’s death is a major biographical rupture for the whole family. |
| format |
article |
| author |
Solenne Carof Sylvain Besle |
| author_facet |
Solenne Carof Sylvain Besle |
| author_sort |
Solenne Carof |
| title |
La trajectoire des enfants inclus dans la recherche : une expérience en termes de ruptures et de continuités |
| title_short |
La trajectoire des enfants inclus dans la recherche : une expérience en termes de ruptures et de continuités |
| title_full |
La trajectoire des enfants inclus dans la recherche : une expérience en termes de ruptures et de continuités |
| title_fullStr |
La trajectoire des enfants inclus dans la recherche : une expérience en termes de ruptures et de continuités |
| title_full_unstemmed |
La trajectoire des enfants inclus dans la recherche : une expérience en termes de ruptures et de continuités |
| title_sort |
la trajectoire des enfants inclus dans la recherche : une expérience en termes de ruptures et de continuités |
| publisher |
Association Anthropologie Médicale Appliquée au Développement et à la Santé |
| publishDate |
2021 |
| url |
https://doaj.org/article/6ab3b436a6a54b4a84a670a3e77a0d35 |
| work_keys_str_mv |
AT solennecarof latrajectoiredesenfantsinclusdanslarechercheuneexperienceentermesderupturesetdecontinuites AT sylvainbesle latrajectoiredesenfantsinclusdanslarechercheuneexperienceentermesderupturesetdecontinuites |
| _version_ |
1718396594932416512 |