Patient Experience Journal (Apr 2016)

Does she think she’s supported? Maternal perceptions of their experiences in the neonatal intensive care unit

  • Emily Lilo,
  • Richard Shaw,
  • Julia Corcoran,
  • Amy Storfer-Isser,
  • Sarah Horwitz

Abstract

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Parents’ involvement in the care of their infants in the neonatal intensive care unit (NICU) is critically important, leading many NICUs to implement policies and practices of family-centered care (FCC). Analyzing narrative interviews, we examined whether mothers of premature infants who participated in an intervention to help reduce anxiety, stress, and depression felt that their NICU experience reflected four key nursing behaviors previously identified as being necessary to achieving FCC. Fifty-six narratives derived from semi-structured interviews with the mothers were analyzed qualitatively and quantitatively to examine whether the women experienced emotional support, parent empowerment, welcoming environment, and parent education, as well as whether differences in reported experiences were related to sociodemographic factors or maternal coping styles. Overall, the mothers reported more negative than positive experiences with respect to the four behaviors, and those who had negative interactions with the hospital staff felt a sense of disenfranchisement and failure as mothers. Sociodemographic factors and coping styles were significantly associated with the mothers’ perceptions of their experiences, although these relationships were not consistent. Achieving actual FCC in the NICU may require parent-informed evidence-based changes in NICU personnel training and infrastructure.

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