In a recently released article in Pediatrics, Dr. Elizabeth Enlow and colleagues share the results of a unique interview study (10.1542/peds.2016-2310) in which 27 mothers of preterm infants shared perceptions about hospital discharge and post-discharge home visitors. Mothers spoke with a researcher 30 days after taking their fragile infant home from the neonatal intensive care unit (NICU), and provided impressions about NICU discharge, facilitators and barriers after discharge, and the acceptability of lay versus nurse home visitors. The authors selected mothers of low socio-economic status, 85% of whom were Black and 48% were first time parents. It is perhaps surprising that thematic saturation was reached after just 27 interviews, but the consistency of the themes identified supports the authors’ findings. In short, concern about the 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 engaging reading.
A couple of issues really stood out for me. Mothers’ perception of lay home visitors was largely negative. This seems to stem both from concern that lay persons did not have sufficient medical knowledge, and also from distrust of social workers from the inpatient experience, leading to the misperception that lay persons were somehow representing the Department of Children and Family Services and “checking” on the adequacy of parenting, rather than on the baby’s wellbeing. Many potential solutions present themselves. If social workers are able to round with the medical team and engage with each family as an advocate for parental mental health and resources (food, housing, employment) from the baby’s admission forward, then a social worker has a chance to become “we” not “they.” While labor intensive, this shifts certain important tasks (parental mental health and advocacy) to the individual on the team who is likely best qualified to lead in this area. It seems highly 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 lay home visitors should depend not on their cost to the health system, but rather on their specific medical training and the purpose of the home visit – for example, is the visit intended only to check that the mother is awake and the baby is clean and fed? The medical purpose of the visit should be very clear to all parties and should gather specific 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, and that is the role of the outpatient primary care provider (PCP). The pediatrician or nurse practitioner who will see and follow the baby, and support the parents, is actually a key part of discharge planning. The authors give acknowledgment of the need to communicate with the “medical home” prior to discharge, but this role deserves additional emphasis in my opinion. Home visitors will need to communicate with the PCP, and usually all services and payments for home care and visiting will actually have to be authorized by the PCP. If the PCP speaks one-to-one with the physician or nurse who best knows the baby prior to discharge, this opportunity might go a long way toward addressing the important theme interviewed mothers raised regarding trust and information 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 up visit with an uninformed PCP (even one who has reviewed the discharge summary) can be highly unsettling to the parents of a frail recently discharged preterm infant – “what do you mean they didn’t tell you about his skin rash?”
In summary, the work of Dr. Enlow and colleagues raises many interesting questions. Involving parents in shared discharge planning is a conceptually simple and logistically demanding path forward. A wonderful resource is the Position Statement of the Canadian Paediatric Society, Fetus and Newborn Committee, “Going Home: Facilitating discharge of the preterm infant,” which offers a checklist and summary that could be adapted for collaborative use with families.1
1. Jefferies AL, Canadian Paediatric Society, Fetus and Newborn Committee. Going home: Facilitating discharge of the preterm infant. Paediatrics & Child Health. 2014;19:31-36.
