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...
| Main Authors: | , |
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| Format: | Article |
| Language: | fra |
| Published: |
Association Anthropologie Médicale Appliquée au Développement et à la Santé
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| Series: | Anthropologie & Santé |
| Subjects: | |
| Online Access: | https://journals.openedition.org/anthropologiesante/10108 |
| _version_ | 1797308852631240704 |
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| author | Solenne Carof Sylvain Besle |
| author_facet | Solenne Carof Sylvain Besle |
| author_sort | Solenne Carof |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-03-08T01:17:41Z |
| format | Article |
| id | doaj.art-f1345c9c9d054dbbbcd70fa3d6c3c6eb |
| institution | Directory Open Access Journal |
| issn | 2111-5028 |
| language | fra |
| last_indexed | 2024-03-08T01:17:41Z |
| publisher | Association Anthropologie Médicale Appliquée au Développement et à la Santé |
| record_format | Article |
| series | Anthropologie & Santé |
| spelling | doaj.art-f1345c9c9d054dbbbcd70fa3d6c3c6eb2024-02-14T14:39:49ZfraAssociation Anthropologie Médicale Appliquée au Développement et à la SantéAnthropologie & Santé2111-50282310.4000/anthropologiesante.10108La trajectoire des enfants inclus dans la recherche : une expérience en termes de ruptures et de continuitésSolenne CarofSylvain BesleThis 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.https://journals.openedition.org/anthropologiesante/10108cancerFranceexperienceschildrenfamilydisease trajectories |
| spellingShingle | Solenne Carof Sylvain Besle La trajectoire des enfants inclus dans la recherche : une expérience en termes de ruptures et de continuités Anthropologie & Santé cancer France experiences children family disease trajectories |
| title | 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_short | 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 experience en termes de ruptures et de continuites |
| topic | cancer France experiences children family disease trajectories |
| url | https://journals.openedition.org/anthropologiesante/10108 |
| work_keys_str_mv | AT solennecarof latrajectoiredesenfantsinclusdanslarechercheuneexperienceentermesderupturesetdecontinuites AT sylvainbesle latrajectoiredesenfantsinclusdanslarechercheuneexperienceentermesderupturesetdecontinuites |