While it is a moment that parents look forward to, being discharged from the unit can come with a lot of anxiety and uncertainty for neonatal families.

Since 2022 we’ve been working with parents, clinicians, and AHPs on Ward 35 to understand and develop a series of initiatives that will make the discharge process a positive one, empower parents to use their voice and thrive while spending time on the unit while having more agency in their babies care. Claire Marcroft, clinical academic neonatal physiotherapist at Newcastle upon Tyne Hospitals Trust kickstarted the project to improve support for parents as they got ready to leave the unit, and in 2023 Tiny Lives commissioned Matthew Lievesley from Northumbria University School of Design to lead the research and design of tools that put the voices and experience of families at the heart of the discharge experience.

After extensive research, including staff workshops, desk research, and parent interviews, a set of helpful tools was created to promote the importance of family, ‘nudge’ staff to consider the parent’s place in the discharge journey, and share handy resources and advice that parents could access on the ward and at home. These included:

•         Posters – eight different colourful posters are now displayed on the walls at the entrance and around the neonatal unit. The posters share empowering phrases that promote the importance of parental involvement and family to counteract what can be a disempowering environment; setting the tone that their babies belong to them and boosting confidence in their roles as partners in their babies’ care.

•         Communication Cards – laminated cards were created for families to use on the ward or at home, outlining what their daily priorities were (for example giving a bath, do skin to skin care, communicating what is important to them) and reinforcing that parents are an important part of the picture too. The cards are given to families when they arrive on the ward and have space for parents to plan out questions for medical teams or write down thoughts and feelings. This gives very tangible ‘permission’ for parents to interact with medical staff and ask questions, raises confidence to approach staff with thoughts, and encourages the development of shared-care tasks and skills. A QR code on each card links back to the Tiny Lives website so parents can see and understand the support that we offer here.

•         Going Home Tips Pocket Book – This is a simple concertina-style information booklet that is given out at discharge, covering key themes that parents shared with us that they would find helpful to take home, including tips and resources to help with sleep, feeding, development, and parent self-care. Alongside the printed cards, a downloadable version of the booklet is also available to make it even easier for parents to access the information that they need. If you would like to download the information for yourself, you can access it here.

All of the resources were intentionally designed to follow a common look and feel that parents and staff could associate with a positive discharge process and that stood out on the busy walls of the ward. Each line illustration draws on themes of comfort, closeness, and contact between parent and baby at the heart and the style of drawing leaves ethnicity, gender, and family structures ambiguous so everyone knows that they are welcomed and their voices are important.

Speaking about the impact project Claire Marcroft said. “Everything was designed to help parents to be partners in the care of their babies, improve support for parents on their transition to home, and help embed a culture change in the environment on the neonatal unit in keeping with core FiCare principles. Since launching the initiative, there has been a much more collaborative and respectful approach, with all staff seeming more open and willing to participate in discussions and critical reflection of their own, and collaborative, practice to improve care. In addition, there are clear signs of culture change, with staff working in partnership with families and being open to supporting individual family’s needs and well-being.

“All resources are now available for families and the feedback has been overwhelmingly positive and it is clear that the tools are making a real difference to parents.

“The posters, especially, set a tone of empowerment and belonging for families, and several parents felt an emotional response to them and felt they were an important part of their NICU memories. The communication cards provided a ‘license’ and a reminder for families to open conversations and ask questions that they might not have otherwise considered. The Going Home Tips booklet was viewed as a helpful ‘one-stop’ resource that parents felt provided reassurance and a safety net once they’d left the unit.

“Perhaps most importantly, all of the resources gave the parents a message that they were being listened to and signposted them to broader concepts of FiCare that they might not otherwise have been aware of.”

These thoughtful initiatives and tools have now been positively adopted throughout the ward and there is a growing sense of ownership in the staff team led by Dr Jenna Gillone, Claire Marcroft, Clare Maclennan, and the Newcastle Neonatal Service FiCare Group. The project has been so positively received that Jacqui from Tiny Lives along with Matthew Lievesley (Healthcare Designer at Northumbria University), Claire Marcroft (Clinical Specialist Neonatal Physiotherapist), and Rachel Collum (parent representative) were invited to attend the Design for Health Conference 2024 in Sheffield.

This is a fantastic achievement for the team and we want to say a huge thank you to every supporter of Tiny Lives, without you projects like this simply wouldn’t be possible.