Care PartIES

Context

In Switzerland, survival rates of babies born prematurely, with low birth weight and/or critical conditions have been growing in the past decades. Accordingly, an increasing number of babies require neonatal intensive care just after being born. From an implementation science perspective, the effectiveness of clinical practices highly depends on involved groups. Despite parents’ critical role in neonatal care, they are usually not included in the planning stages of research.

About the project

In the participatory research project «Care -PartIES» researchers and parents with experience in neonatal intensive care will work closely together with the overarching long-term goals of establishing an ongoing collaborative to set an agenda and prioritization of topics for participatory research as well as building long-term partnerships with caregiver citizen partners.

The expected impact of the project is an increased relevance for families of the scope and outcomes of neonatal research. Participative research holds the potential to positively impact mothers’ and fathers’ health care involvement and interactions with hospital staff. Supporting positive experiences in neonatal care by including parent perspectives in clinical research may ultimately benefit the whole health care system.

Involvement of citizen scientists

In interactive workshops informed through citizen partners and evidence-based review of literature, we will define research priorities and outcomes of interest, as well as explore conditions for parental involvement in neonatal research, their benefits, and challenges. These workshops will be both co- developed and co-facilitated by researchers and citizen partners. Their participatory inclusion in the design of research questions and activities from an early stage will promote the research outcomes’ relevance for families.