Care PartIES – The inclusion of Caregivers in Participatory Implementation and Evaluation Science in neonatal care

Infants who are born premature often require intensive medical care. Various healthcare professionals, including neonatologists and nurses, are involved in their care. Parents or caregivers also play an immensely important role in this context. They care for their babies, soothe them, practice kangaroo care, and are irreplaceable for their well-being. For the hospital staff, parents are crucial partners when making decisions regarding patient care.

Despite their frequent presence in neonatal units, parents are rarely directly involved in neonatal research. The citizen science project Care PartIES aims to actively incorporate the parental perspective in all phases of neonatal research. In four workshops with parent representatives (veteran parents whose children have been treated in neonatal intensive care), we develop research questions and clinical outcomes that are relevant from their point of view. Additionally, we explore how parents can practically be included in neonatal research and the necessary prerequisites for their involvement.

As part of this project, we collaborate with the citizen organization Frühchen Schweiz (Premature Baby Switzerland). The project is supported by Citizen Science Zurich.