Professor Fiona Alderdice has a longstanding relationship with Tiny Life, the Northern Ireland charity for sick and premature babies. She was funded by Tiny Life in its previous life as NIMBA and served on the Board of Directors during its successful transition to Tiny Life. These days Fiona and other members of the School work very closely with Tiny Life’s CEO Alison McNulty in ensuring that parents of sick and premature babies have a voice in research, policy and practice.
Tiny Life is our partner in the development of the Parent and Baby LAB, which was established to develop innovations that ultimately lead to high quality, low-cost effective assessment of psychosocial function in the family and developmental functioning of sick and premature babies in clinical practice. Furthermore, the work of the LAB aims to identify and develop simple low cost interventions that enhance family well-being and infant development. Our innovations and interventions are applied, globally relevant, parent led and guided by an inter-disciplinary approach.
We currently have two projects running with Tiny Life. The first is Tiny Start (funded by the Big Lottery Fiona Alderdice, PI, Fiona Lynn and Oliver Perra) where we are helping to evaluate the delivery of a programme to support development during the first 3 years of life and we are conducting assessment of babies at key milestone in the programme. Caring for Baby After Going Home From Hospital (funded by Tiny Life, Fiona Alderdice PI, Linda Franck (UCSF; coPI), Rhonda Curran, Crystal McClean (parent) and David Millar (BHSCT)) aims to develop a website with information for parents of premature babies post discharge. This is a difficult time for parents and little currently exists to support this demanding transition so we are working with parent and practitioner to prioritize information needs and to establish a parent friendly platform to deliver this information.
We are also working in partnership with Tiny Life and the Northern Ireland Neonatal Intensive Care network (NNNI) to support parent engagement in neonatal intensive care throughout Northern Ireland. Emma McCall, a postdoctoral fellow in the School, is funded by the Public Health Agency to support the network through the maintenance of the Neonatal Intensive Care Outcomes Research and Evaluation database. Emma and Fiona, along with the NNNI parent engagement group, developed and continue to maintain the Regional Discharge Questionnaire that all parents are asked to complete when their baby is discharged from the neonatal unit. Having developed these robust routine data sources we have access to detailed, standardized information on their experience of care.
Our partnership with Tiny Life and NNNI gives us confidence that our research with sick and premature babies is well grounded in patient experience and clinical practice. It also ensures that the findings of our research reach those who need to know about it and those who can help make a difference to future care.