Continuity of Care Transition & Discharge Planning, Fetus/Newborn Infant, HospitalMedicine, Neonatology

Helping on the Way Home from the NICU - What is the Best PathForward?by Dr Lydia Furman MD, Assistant Editor, Pediatrics

In a recently released article in Pediatrics, Dr. Elizabeth Enlowand colleagues share the results of a unique interview study ( 10.1542/peds.2016-2310) in which 27 mothers ofpreterm infants shared perceptions about hospital discharge and post-discharge home visitors. Mothers spokewith a researcher 30 days after taking their fragile infant home from the neonatal intensive care unit (NICU), andprovided impressions about NICU discharge, facilitators and barriers after discharge, and the acceptability of layversus nurse home visitors. The authors selected mothers of low socio-economic status, 85% of whom wereBlack and 48% were first time parents. It is perhaps surprising that thematic saturation was reached after just 27interviews, but the consistency of the themes identified supports the authors' findings. In short, concern aboutthe infant's health, trust and information consistency, and coping and support were the main themes identified,but the details of their findings, particularly the quotes from the mothers themselves, make the article engagingreading.A couple of issues really stood out for me. Mothers' perception of lay home visitors was largely negative. Thisseems to stem both from concern that lay persons did not have sufficient medical knowledge, and also fromdistrust of social workers from the inpatient experience, leading to the misperception that lay persons weresomehow representing the Department of Children and Family Services and " checking" on the adequacy ofparenting, rather than on the baby's wellbeing. Many potential solutions present themselves. If social workersare able to round with the medical team and engage with each family as an advocate for parental mental healthand resources (food, housing, employment) from the baby's admission forward, then a social worker has achance to become "we" not " they." While labor intensive, this shifts certain important tasks (parental mentalhealth and advocacy) to the individual on the team who is likely best qualified to lead in this area. It seemshighly perceptive of the interviewed mothers (parents in the study were all mothers) to note that lay persons,indeed, might not be qualified to address the health needs of their very small babies. The appropriateness of layhome visitors should depend not on their cost to the health system, but rather on their specific medical trainingand the purpose of the home visit - for example, is the visit intended only to check that the mother is awake andthe baby is clean and fed? The medical purpose of the visit should be very clear to all parties and should gatherspecific information that will be directly shared with the health provider; if there are additional purposes (support,advocacy) these should be clearly explained and understood.

The second issue that stood out for me is one that was not directly addressed by the parental interviews, andthat is the role of the outpatient primary care provider (PCP). The pediatrician or nurse practitioner who will seeand follow the baby, and support the parents, is actually a key part of discharge planning. The authors giveacknowledgment of the need to communicate with the "medical home" prior to discharge, but this role deservesadditional emphasis in my opinion. Home visitors will need to communicate with the PCP, and usually all

Copyright © 2017 American Academy of Pediatrics

https://www.flickr.com/photos/45651797@N03/4326238634/in/photolist-7Ai72h-7Ai6om-7AejUZ-89Jzra-eSQvY-89uyZs-6NoLXc-89uz9S-arZvND-89rjji-iDb6g-7Aej7g-7AehE2-6NoLTR-inpuV-89uzwG-7AekvM-7S3BG7-fhLZL-89rjLg-7Ai3Tm-7S3BMQ-7CLK7z-89uA33-89rkjT-89rkJF-39CAd3-5c4Az2-jmFs2-5c8QSL-focnv-6vd9hb-5c8RTY-5Ri5wR-5c4zGg-fjPyn-bSqg84-7RLFzg-hsdNR-7CvBwT-iNByv-hnME8-fodmf-gDo5G-fZxmd-hscpY-rzFHm-5RR5g1-5RnnpG-fUHBNhttps://doi.org/10.1542/peds.2016-2310

Continuity of Care Transition & Discharge Planning, Fetus/Newborn Infant, HospitalMedicine, Neonatologyservices and payments for home care and visiting will actually have to be authorized by the PCP. If the PCPspeaks one-to-one with the physician or nurse who best knows the baby prior to discharge, this opportunitymight go a long way toward addressing the important theme interviewed mothers raised regarding trust andinformation consistency. Discharge summaries tend to be a festival of "cut and paste" from the medical record,and even when carefully reviewed, are not always revealing. It is my clinical impression that a hospital follow upvisit with an uninformed PCP (even one who has reviewed the discharge summary) can be highly unsettling tothe parents of a frail recently discharged preterm infant - "what do you mean they didn't tell you about his skinrash?"

In summary, the work of Dr. Enlow and colleagues raises many interesting questions. Involving parents inshared discharge planning is a conceptually simple and logistically demanding path forward. A wonderfulresource is the Position Statement of the Canadian Paediatric Society, Fetus and Newborn Committee, "GoingHome: Facilitating discharge of the preterm infant," which offers a checklist and summary that could be adaptedfor collaborative use with families.1

1. Jefferies AL, Canadian Paediatric Society, Fetus and Newborn Committee. Going home: Facilitatingdischarge of the preterm infant. Paediatrics & Child Health. 2014;19:31-36.

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