Co-designing resources to empower the families of preterm infants: from hospital to home.
Aims: In this study we aimed to explore the experiences of parents on the NICU, identifying barriers to Family Integrated Care and developing interventions to support families transitioning from the neonatal unit to home. An adapted Experience-based Co-design (EBCD) approach was followed (Robert 2013), supplemented with in-depth parent interviews. Prototypical intervention components were defined, developed, and later piloted in-situ, live on the NICU. We report the development process, intervention components and share early insights from the pilot.
Methods: The research was conducted in the North East of England and explored the experiences of families cared for by the Newcastle Neonatal Service, in the UK NHS. To guide intervention development, data from a series of co-design workshops were combined with interview data from health and care specialists and three in-depth interviews with neonatal parents. Informed consent and parent participation was facilitated throughout by the Tiny Lives Trust, a key charity supporting local neonatal families.
Findings: Key themes identified in the early feedback from the pilot centred around parents' sense of agency in sharing care-responsibilities and sense of belonging on the Neonatal Intensive Care Unit (NICU), as well as the optimal timing of access to information and resources. From a staff perspective, the neonatal team valued and used the visual assets developed and were encouraged to appropriate them for other related communication. Two examples of this: The Ward invested in full redecoration programme, incorporating the set of inclusive illustrations and affirmative messaging promoting parental engagement. Some senior clinicians have also had the illustrations embroidered onto their own scrubs. Along with a range of other ways the visual elements have been incorporated, these staff-led initiatives demonstrate growing local adoption beyond the original study.
Conclusions: Current NICU environments are optimised for care delivery to the infant but should also be conceptualised as a place for vocational learning to take place through families.
