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Clinical uncertainties regarding best practices on preterm nutrition will be addressed in a future randomised control trial. However, researchers first sought the views and experiences of parents of preterm babies and adults born preterm to consider them during the study design. The results of two roundtable discussions showed strong support for further research but also revealed variation in participants’ knowledge about research trials and in information provided to parents during a baby’s hospital stay. Researchers note that parental and patient involvement in research should be encouraged.
The nutrition of a baby, especially a preterm baby, may influence the risk for some health complications, such as necrotising enterocolitis (NEC), an acquired gastrointestinal inflammatory disease that can be deadly. Early nutrition also affects life-long health and well-being. A baby’s own mother’s milk (OMM) has been noted as the best source of nutrition but is not always an option. As an alternative, preterm formula and pasteurised human donor milk are sometimes available. Still, there are some clinical practice uncertainties regarding which of the alternatives leads to better outcomes and if there should be an additional step of adding micronutrient fortification to these.
As part of developing a randomised controlled trial (RCT) to address these uncertainties, a group of researchers sought to obtain the views of parents and adults born preterm from European countries on this topic. For this purpose, researchers, together with the European Foundation for the Care of Newborn Infants (EFCNI), organised two roundtable discussions about the proposed RCT. Parents and preterm adults were asked to discuss their views and prior knowledge of preterm nutrition uncertainties, treatment comparisons and opinions on specific aspects of the study design. The discussions followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist, and data was analysed following the thematic Framework Analysis.
There were 11 participants from six European countries in the discussions. Nine were parents, and two were preterm adults. Results showed that nutrition advice varied across Europe, with positive encouragement of providing OMM but also some significant barriers, such as parents being unable to stay with their baby in the neonatology unit. There were also vast differences in information provided to parents during their baby’s neonatal unit stay. Regarding the knowledge and experiences with trials, participants had limited understanding of trial methods, randomisation and informed consent. They strongly supported the need for further research to improve care and mentioned that a key factor in perceiving a neonatal trial either positively or negatively was the communication skills of the trial and clinical staff. Finally, results showed that no parent had recalled a clinical staff member ever having told them about nutrition uncertainties, which is an essential consideration for the planning of the RCT.
These analyses confirm that there is a need for better involvement of parents, patients and the public in all stages of clinical research, from design to dissemination and implementation. The roundtable discussions highlighted some weaknesses in knowledge within the three groups. Therefore, participants’ feedback will influence the next steps in the study design and development of the RCT on nutrition uncertainties.
Paper available at: Early Human Development
Full list of authors: Becky Moss, Will Lammons, Isabel Geiger, Johanna Kostenzer, Silke Mader, Estela Coutinho, Juliëtte Kamphuis, Séverine Soiron, Eveline Bergmüller, Neena Modi
