After a few weeks break (for a number of reasons), I’m ready to start blogging again! I’m sure you have all missed the succinct and perceptive critiques of the recent neonatal literature, but today I will start with 2 publications that cannot be criticized (at least not by me!) I’m proud of both of them, and hope you appreciate, and learn something, from them, they are both a little different to the usual research article or review:
Janvier A, Lantos J, Aschner J, Barrington K, Batton B, Batton D, et al. Stronger and More Vulnerable: A Balanced View of the Impacts of the NICU Experience on Parents. Pediatrics. 2016. This group of authors (or a slightly different iteration) previously published an article about how healthcare professionals should interact with parents in the NICU, the authors are all healthcare professionals who have had experience of the NICU as ‘users’, parents, grandparents, or sometimes both; some of the authors had babies who survived, others experienced a neonatal death. This new article is a meditation on how the NICU experience has affected us as individuals, and tries to give a balanced view, that the impacts are not all negative, and that the individuals we met who cared for our babies had profound impacts on us. We discuss our feelings of gratitude, our new perspectives, feelings of loss of control, making decisions with ‘the heart’, finding connectedness, resilience and humility, developing forgiveness and a renewed sense of dedication to quality patient care. We end with a series of recommendations which I reproduce here:
Be aware that parents experience both negative and positive impacts after an NICU experience. Researchers examining these outcomes should investigate both sides of the story. Communications with parents should be balanced.
Remain humble. Avoid sentences such as: “Parents don’t understand” or “If I were in their situation, I would not….” Too often, it is providers who do not understand.
Tell parents that they did not choose the misfortunes that are happening to their infant, that there is nothing they could have done to prevent this. Remind them often that their infant is lucky to have parents who love him or her.
Let parents know that positive transformations are possible.
Temper discussions about risks with words about something good happening, such as resilience, love, and the chances of healing.
Help parents prioritize their energy and how to recognize what they can and cannot control. Encourage them to let go where they can.
Inform parents that life will not always be like this, that the roller coaster will become a train with a known destination. That one day, it will be better. That they are stronger than they think. That they have to believe it.
We can be there for parents at tough moments or avoid them. Be there.
Rysavy MA, Marlow N, Doyle LW, Tyson JE, Serenius F, Iams JD, Stoll, BJ, Barrington KJ, Bell EF. Reporting Outcomes of Extremely Preterm Births. Pediatrics. 2016. This article is a discussion of how statistics are calculated and reported in neonatology. We note that there are many failures in published reports of perinatal statistics, often the denominator is not clear, or not complete. Such failures have major impacts on how we understand outcomes.
For example, a regional or national sample of extremely preterm deliveries may be considered to be “better” than a hospital series, but if infants born outside of tertiary centers are included, the implications for an infant about to be born in a tertiary center who has already had their steroids are limited. Similarly, statistics based only on NICU admissions, and not on live births may not be very applicable if delivery room death is a real possibility. Furthermore, the obstetric approach may be non-interventionist, leading to stillbirth, and if death of the fetus during labour is not described, then understanding outcomes may be impossible. In addition if the hospital policy is not to provide intensive care support at some specified gestational age, then survival at that gestational age will likely be very poor, and if the decisions are not described, then the results are of little meaning.
We give 7 recommendations for how statistics should be reported:
Describe the Source Population
Define a Study’s Inception Point
Stratify Outcomes by Gestational Age at Birth
Report on Decisions Regarding Treatment
Describe Outcome Definitions
Describe the Timing of Outcome Assessment
Report the Statistical Uncertainty of the Outcome
If universally followed, these recommendations would make statistics regarding survival much more meaningful.