Involving Children With Cancer in Health Promotive Research: A Case Study Describing Why, What, and How
Notice bibliographique
Résumé
BACKGROUND: Participatory research approaches have been introduced to meet end-users' needs in the development of health promotion interventions among children. However, whereas children are increasingly involved as passive informants in particular parts of research, they are rarely involved as partners, equal to adult researchers, throughout the research process. This is especially prominent in the context of child health where the child is commonly considered to be vulnerable or when the research concerns sensitive situations. In these cases, researchers and gatekeepers to children's involvement base their resistance to active involvement of children on potential adverse effects on the accuracy or quality of the research or on ethical or moral principles that participation might harm the child. Thus most research aimed at developing health promotion interventions for children in health care is primarily based on the involvement of parents, caregivers, and other stakeholders. OBJECTIVE: The objective of this paper is to discuss reasons for involving children in health promotive research and to explore models for children's participation in research as a basis for describing how researchers can use design methodology and participatory approaches to support the participation and contribution of children in a vulnerable context. METHODS: We developed and applied a model for children's participation in research to the development of a digital peer support service for children cancer survivors. This guided the selection of appropriate research and design methodologies (such as interviews, focus groups, design sessions, and usability evaluation) for involving the children cancer survivors (8-12 years) in the design of a digital peer support service. RESULTS: We present a model for what children's participation in research means and describe how we practically implemented this model in a research project on children with cancer. This paper can inform researchers in their planning of strategies for children's participation and ensure future development of health promotion interventions for children is based on their perspectives. CONCLUSIONS: Challenges in reaching a suitable degree of participation during a research project involve both creating opportunities for children to have genuine influence on the research process and organizing this involvement so that they feel they understand what they are involved in and why. To achieve this, it is essential to enable children to be involved in research over time to gain confidence in the researchers and to develop children's abilities to make decisions throughout the research processes.
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Comment cette classification a été obtenuedéplier
Prédiction distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,013 | 0,001 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,001 |
| Études des sciences et des technologies | 0,006 | 0,001 |
| Communication savante | 0,004 | 0,002 |
| Science ouverte | 0,001 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule tête enseignante, pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».