A Parent's Perspective on Neonatal Research


Guest blog written by Vivien Ingate
Faculty of Arts Intern, Department of Nursing, Melbourne School of Health Sciences, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne

An Interview with Miracle Babies’ Melinda Cruz: A Parent’s Perspective on Neonatal Research

Breastfeeding and holding babies skin-to-skin, are two simple and effective family-centred strategies to reduce babies’ pain, that are often overlooked in Neonatal Intensive Care Units (NICU).  Parents and families play an important role in comforting babies during painful procedures but are often unaware of these strategies and their positive effects in reducing pain. Although the role of parents in the care of their babies’ in NICU has increasingly been seen as vital for positive outcomes, there is still a lack of uptake for family-led strategies to reduce pain.   

The University of Melbourne’s Be Sweet to Babies research team, led by Professor Denise Harrison, have collaborated with the Miracle Babies Foundation to research the use of these strategies by families in the NICU through an online survey for parents and families of sick and premature newborns. Research is an integral part of clinical practice, in finding ways that the hospital experience can be made easier for both babies and their parents. The importance of such a study, is amplified for sick and premature babies in the NICU who require repeated painful procedures throughout their hospital stay.

Melinda Cruz, founder and board member of the Miracle Babies Foundation, has been through the NICU as a parent multiple times, following the premature births of her three children. Melinda has had mixed experiences using family-led pain reduction strategies in the NICU. She has been both encouraged to use, and prohibited from using, these strategies during different clinical procedures. In her experience, comfort strategies, such as breastfeeding and skin-to-skin care were sometimes used to settle her babies, but it was not specified that these strategies could be used for pain relief. Parents like Melinda are often unaware of the fact that their babies would undergo medical procedures without any kind of medication or pain relief and are often uninformed about how they can help.

For Melinda, an important part of research into family-led care is educating and empowering parents to feel confident in their ability to advocate for the use of best practices in their babies’ care. Providing parents with an understanding of what they can do to support their baby can change how parents deal with the emotional distress that can arise from their babies’ NICU stay. Melinda feels that if she had known about these strategies earlier, she would have felt more relaxed in the NICU, knowing that she could practically contribute to her babies’ care and provide necessary pain relief.

In recent years, publicly accessible online spaces have broadened the avenues through which parents can access information about evidence-based strategies of care and connect with others with similar experiences. Melinda emphasises the importance of building communities that provide parents with emotional support, and networks that can connect them with important information and research initiatives.

The Miracle Babies Foundation supports families with sick and premature babies, educating and empowering parents with evidence-based neonatal information. Over time, Miracle Babies has become more involved in research projects, working with researchers and clinicians in changing the way that health is delivered. Despite the fact that many members of the Miracle Babies Foundation no longer have young children or babies themselves, many are still involved with the organisation, often through participation in research. Melinda states that this involvement can be cathartic for parents, as they are able to draw on their own experience to contribute to improving care for future babies and their families.

In the neonatal space, there is often low uptake for new research, prolonging the time it takes to get results into practice. With parents working alongside clinicians and researchers, it becomes easier to increase the uptake of best practices and improve care for more babies and young families. Through the Miracle Babies Foundation, Melinda encourages parents to become further involved in neonatal research. By taking down the barriers, and alleviating the fear of research, Miracle Babies hopes to reassure parents, and provide them with the knowledge they need to advocate for evidence-based practices, and become more involved in their babies’ care.

The Be Sweet to Babies research project aims to provide parents and families with this information, through an educational video co-produced by parents and healthcare professionals, while Professor Harrison was working at the Children’s Hospital of Eastern Ontario and the University of Ottawa, Canada. This video demonstrates how breastfeeding, skin-to-skin care, and giving babies very small amounts of sugar water, can be utilised to reduce babies’ pain during clinical procedures. The project’s survey investigates the use of these practices by parents and families in the NICU, seeking input from parents about their own experiences. Care in the NICU is constantly being advanced by the joint effort of clinicians, researchers and parents. The Miracle Babies Foundation’s involvement in this study from the beginning of its development has ensured this parental perspective is being prioritised in research. Parent members of the foundation have pre-tested the survey, ensuring the research project is helpful for parents and families of sick or premature babies.

Creating opportunities for parents to learn more and get involved in research, is crucial to advancing the wellbeing of babies in the NICU, and their families. The project has been co-produced by the Miracle Babies Foundation, and the Be Sweet to Babies research team, taking a multidisciplinary approach to research that bridges the gap between families and researchers in the neonatal space. The Be Sweet to Babies video and the accompanying survey, provide an avenue for parents to learn more about these strategies, and contribute to research into neonatal care, by providing insights about their own experiences.

To learn more about the Be Sweet to Babies research project, visit our Active Surveys page HERE.