Vulnerable Population: The Premature Neonate
There was a boy in the neonatal intensive care unit (NICU), we will call him John, born prematurely along with severe muscular dystrophy. His mother, also with muscular dystrophy, did not know she was pregnant and spent a terrible month in the adult intensive care unit (ICU) after giving birth to John. John’s mom was on AISH (Assured Income for the Severely Handicapped) and needed much assistance to take care of herself. John was unable to breath on his own as he did not have the muscle strength or lung development, and required an endotracheal tube (ETT) attached to a ventilator for constant respiratory support. He was also unable to suck or swallow without aspiration and had to be fed through an intravenous or a gastric tube his whole NICU life. With the severity of his muscular dystrophy, the doctors predicted that John would never walk, talk, eat on his own, or breath without a machine. Our team of nurses, doctors, dieticians, physiotherapists, social workers and psychologists were trying to figure out if and how John would ever be able to go home. How would his mom be able to care for a boy with such high needs while she requires so much help herself? Despite the difficult future ahead, his mom still wanted everything done for her child.
After 5 months in hospital, hundreds of needle pokes, many nasal and oral gastric tube insertions, painful ETT intubations (which led to a tracheotomy), traumatic suctioning, and many more invasive and painful procedures, John passed away.
I decided to research the vulnerable population of the premature neonate, who are at extreme risk for illness, disability, infection and more, and are unable to advocate or make any decisions for themselves and their own wellbeing.
There are a vast number of medical problems that premature infants can experience which include broncho-pulmonary dysplasia, where the lungs are not fully formed at birth (affects 67%), heart defects, such as patent ductus arteriosus (affects 7–28%), and necrotizing enterocolitis (affects 4–7%) “which occurs when portions of bowel tissue undergo necrosis, or tissue death. After respiratory problems, this is the second greatest cause of death amongst the preterm population, and those who survive can have chronic, long-term bowel related problems and a feeding intolerance” (Towers, 2018). Neuromotor dysfunction, most commonly cerebral palsy (affects at least 12%) and being 25 times more likely to have a hearing impairment are a couple adverse neurological outcomes of prematurity (Towers, 2018). We also can’t forget the cognitive, social, emotional and mental heath aspects, such as learning disabilities and disorders such as Attention Deficit Hyperactivity Disorder (ADHD) that premature infants may face in their futures (Towers, 2018).
What kind of pain do these infants experience? When an adult is intubated in the ICU, they are often given medications such as morphine, fentanyl and/or propofol for pain relief and sedation through the uncomfortable and painful experience. There are many infants in the NICU that have a breathing tube with no medications for pain or sedation accompanying it. Being so underdeveloped they are unable to truly express the pain they may be enduring, and “a study in France reported that on average, infants in the NICU experience 115 painful procedures in a 2-week period” (Badr, 2013, p. 82). There have been more than 40 assessment tools for pain assessment published, and while I was working in the NICU we used a “PIPP” score; Premature Infant Pain Profile. Despite our attention to the pain experienced by these neonates, it is extremely difficult to ensure an accurate score, and Badr states “despite the variety of instruments that assess acute pain, there is no adequate measurement of chronic pain or pain in neurologically or physically impaired infants” (Badr, 2013, pg. 84).
As health care professionals, what are we doing to assist this vulnerable population during their hospital stay and in their futures? I have three strategies or interventions that I would like to identify based on my own experience as a NICU nurse. The first is to advocate for our patients and their families, when the can’t do so for themselves. The babies we look after cannot tell us exactly what they need, and parents in the NICU can often be extremely exhausted, overwhelmed and emotional, and often look to the nurses for advice and support. Spence said “Through experience, nurses gain the knowledge that enables them to be more effective advocates within the health‐care team and the organization” (Spence, 2011 p. 643) and “the advocacy role for neonatal and pediatric nurses often extends to include the parents and families of their infant patients” (Spence, 2011 p.642). At the NICU and Foothills Medical Centre in Calgary we as a team encouraged nurses to become a “primary nurse” for a baby/family. As a primary RN, you are assigned as often as possible to look after a specific infant, and can quickly to get to know makes them comfortable or what positioning or actions help them settle. The nurse can also bond with the parents which helps to increase their comfort levels, confidence and decrease the stress they experience in the NICU. Knowing a patient and the family well not only improves the care we can give but assists in the success and strength of advocating for our patient.
The second intervention that helps immensely with the care of the babes is Family Centered Care (FCC). Encouraging parents to be in hospital with their baby as much as they can, or as often as the unit allows. Family-centered care has shown many benefits “including decreased length of stay, enhanced parent–infant attachment and bonding, improved well-being of preterm infants, better mental health outcomes, better allocation of resources, decreased likelihood of lawsuits and greater patient and family satisfaction.” (Cooper, Gooding, Gallagher, Sternesky, Ledsky & Berns, 2007, p. 32). I have seen parent’s love and confidence increase the more they interact and assist with the care of their small and delicate newborn. Being present at the bedside decreases stress and anxiety and improves the health of both the neonate and the family.
The last idea that I think is important from my practice experience is trying to control our patients’ pain, even if we can’t truly identify level of pain a neonate may be experiencing. Treating pain does not always mean prepping a syringe of morphine or fentanyl, many studies have identified and proven the positive effects of non-medicinal methods of comforting a newborn. While I was working in the NICU, we used methods such as bundling, non-nutritive sucking, containment, and sugar drops called “sweeties” to relax or distract the infant from the procedure occurring. An article also identifies that “one of the strategies to reduce pain is breast feeding during painful procedures” as “feeding by breasts contains natural methods to reduce pain including skin touch, sucking, and sweet taste of mothers' milk”. (Zargham-Boroujeni, Elsagh & Mohammadizadeh, 2017, p.309). Since we cannot accurately identify the pain a neonate experiences during all the “poking and prodding” we do in the NICU, I have always believed in the importance of comforting or relaxing the infants to the best of our professional ability.
I am sure there are many more ways we as health care professionals can support this vulnerable population of tiny, beautiful and innocent humans. This blog mentions only a few, but it is a start! I look forward to researching about the continuing medical advancements in the neonatal world of health.
References
Badr, L. K. (2013). Article: Pain in Premature Infants: What Is Conclusive Evidence and What Is Not. Newborn and Infant Nursing Reviews, 13, 82–86. Retrieved from https://0-doi-org.aupac.lib.athabascau.ca/10.1053/j.nainr.2013.03.002
Cooper, L. G., Gooding, J. S., Gallagher, J., Sternesky, L., Ledsky, R., & Berns, S. D. (2007). Impact of a family-centered care initiative on NICU care, staff and families. Journal Of Perinatology, 27(2), 32-37. Retrieved from http://0-search.ebscohost.com.aupac.lib.athabascau.ca/login.aspx?direct=true&db=edsbl&AN=RN219521442&site=eds-live
Gooding, J. S., Cooper, L. G., Blaine, A. I., Franck, L. S., Howse, J. L., & Berns, S. D. (2011). Family Support and Family-Centered Care in the Neonatal Intensive Care Unit: Origins, Advances, Impact. Seminars in Perinatology, 35, 20–28. Retrieved from https://0-doi-org.aupac.lib.athabascau.ca/10.1053/j.semperi.2010.10.004
Spence, K. (2011). Ethical advocacy based on caring: A model for neonatal and paediatric nurses. Journal of Paediatrics and Child Health, 47(9). 642-645. doi:10.1111/j.1440-1754.2011.02178.x
Towers, K. (2018). What Are the Outcomes for Children Born Preterm and How Can Interventions Meet Their Needs? Educational Psychology in Practice, 34(2), 195–207. Retrieved from http://0-search.ebscohost.com.aupac.lib.athabascau.ca/login.aspx?direct=true&db=eric&AN=EJ1173206&site=eds-live
Zargham-Boroujeni, A., Elsagh, A., & Mohammadizadeh, M. (2017). The Effects of Massage and Breastfeeding on Response to Venipuncture Pain among Hospitalized Neonates. Iranian journal of nursing and midwifery research, 22(4), 308-312. doi: 10.4103/ijnmr.IJNMR_119_13
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