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Parental Epistemic Roles in Children’s Healthcare

Project description

Parent knowledge in paediatric healthcare

Epistemic injustices in neonatal and paediatric care arise when parents’ knowledge is dismissed. Although bioethics and social epistemology seek to develop new frameworks, these concepts often remain abstract. Supported by the Marie Skłodowska-Curie Actions programme, the PERCHILD project will enhance our understanding of parental knowledge by analysing parents’ narratives and experiences in shared decision-making. Combining theoretical analysis and qualitative research based on parents’ testimonies, it will first create a framework on epistemic care to provide evidence of how testimonial and hermeneutical injustices manifest in practice. The project will examine how parents experience illness during interactions with healthcare providers, highlighting that better care comes from teamwork. It will also show that parental preferences evolve within relational contexts.

Objective

Epistemic injustices in neonatal and paediatric care occur when the knowledge of parents is dismissed. While a central task for bioethics and social epistemology is to develop new theoretical frameworks, these concepts often remain abstract. This project bridges that gap by grounding philosophical inquiry in the lived realities of clinical practice. It aims to articulate an epistemologically informed account of parental knowledge by analysing parents’ narratives, using their direct experiences to manage the practical and philosophical challenges of shared decision-making. The project will first develop a conceptual framework on epistemic carers by combining theoretical analysis with qualitative research based on parents’ testimony. This empirical work is essential, as it will provide concrete evidence of how testimonial and hermeneutical injustices operate in practice. Second, I will extend the phenomenology of illness to parents and integrate it with the ontology of medical practice to explore how illness is enacted through parental-clinical interactions. Drawing on the logic of care, the project seeks to highlight how better care emerge from collaborative efforts. Finally, it reconsiders shared decision-making by showing that parental preferences are not fixed choices, but emerge within relational context.

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HORIZON-TMA-MSCA-PF-EF - HORIZON TMA MSCA Postdoctoral Fellowships - European Fellowships

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(opens in new window) HORIZON-MSCA-2025-PF

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Coordinator

AGENCIA ESTATAL CONSEJO SUPERIOR DE INVESTIGACIONES CIENTIFICAS
Net EU contribution

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€ 209 914,56
Address
CALLE SERRANO 117
28006 Madrid
Spain

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Comunidad de Madrid Comunidad de Madrid Madrid
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Research Organisations
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