Mothers' Experiences in the NICU Before Family-Centered Care and in NICUs Where It Is the Standard of Care

Abstract

Background: Family-centered care (FCC) in neonatal intensive care units (NICUs) was initiated in 1992 to promote a respectful response to individual family needs and support parental participation in care and decision-making for their infants. Although benefits of FCC have been reported, changes in the maternal experience in the NICU are unknown. Purpose: The purpose of this study was to compare mothers' experiences in NICUs where FCC is the standard of care and to compare these with the experiences of mothers 2 decades ago. Methods: In this qualitative descriptive design, mothers of infants born under 32 weeks postconceptional age were asked to describe their experiences with their infant's birth and hospitalization. Open-ended probing questions clarified maternal responses. Saturation was reached after 14 interviews. Iterative coding and thematic grouping was used for analysis. Results: Common themes that emerged were: (1) visiting; (2) general caregiving; (3) holding; (4) feeding; and (5) maternal ideas for improvement. Findings indicated important improvements in privacy, mother–nurse relationship, ease of visiting, and maternal knowledge and participation in infant caregiving. Implications for Practice: Mothers suggested improvements such as additional comforts in private rooms, areas in the NICU where they can meet other mothers, and early information on back-transport. Better recognition and response for mothers without adequate social support would provide much needed emotional assistance. Implications for Research: Future research addressing benefits of webcams, wireless monitors, back-transport, maternity leave, and accommodations for extended visiting for siblings would address other needs mentioned by mothers.

Parents’ pandemic NICU experience in the United States: a qualitative study

“…Studies have shown that when an infant requires NICU hospitalization, the normative transition to parenthood can be altered, resulting in worsened parental mental health and confidence [ 15 , 16 ]. For this reason, many hospitals have implemented family-centered care practices to help mitigate the disruption of the transition to parenthood [ 17 – 19 ] and provide unrestricted access to their hospitalized infant to optimize neurodevelopmental outcomes and parent mental health [ 20 – 22 ].…”

The Association of Social Factors and Time Spent in the NICU for Mothers of Very Preterm Infants

“…Previous qualitative work from our group revealed several barriers to maternal engagement during birth hospitalization, including the stress and trauma of preterm delivery and subsequent NICU hospitalization, presence of many tubes and wires within the physical environment of the NICU, and lack of available paid leave. 3,4 Conversely, facilitators to engagement included strong family social support, the privacy of singlefamily rooms within the NICU, and families establishing a trusted relationship with their medical provider team.…”

Incorporating parent, former patient and clinician perspectives in the design of a national UK double-cluster, randomised controlled trial addressing uncertainties in preterm nutrition

“…Furthermore, in addition to the baby’s medical care needs, this consultation, along with others, has identified that the provision of information to participants and enrolment to trials should consider the emotional needs of the parents as affected by study decision-making, information processing and language in study materials. 28 29 This consultation illustrates the need for further work to address the anxieties described and experienced by healthcare professionals. We hope this will help spearhead a truly collaborative research culture between parents, clinicians, and researchers.…”