Lived experience of spontaneous preterm birth following spontaneous preterm labor: the primary caregiver’s perspective

Abstract

Purpose: This study aimed to address an evidentiary gap by exploring caregivers’ lived experiences of spontaneous preterm birth (sPTB) resulting from spontaneous preterm labor (sPTL) and characterize the most relevant health-related quality of life (HRQoL) impacts. Insights were used to develop a conceptual model. Methods: Qualitative concept elicitation interviews were conducted with 24 primary caregivers in the United States, diagnosed with sPTB between 23 and 36 weeks’ gestational age (GA) resulting from sPTL. Interview transcripts were thematically analyzed. Results: During pregnancy, caregivers commonly reported physical and emotional changes, and limited awareness of sPTL. Many did not recognize their signs and symptoms of sPTL onset as indicative of labor, and described a lack of choice regarding sPTL treatment. Caregivers consistently described neonatal outcomes as central to maternal HRQoL. Those who gave birth at lower GAs typically reported more frequent short-term and longer-term neonatal health or developmental problems, longer NICU stays, and worse NICU experiences. Maternal HRQoL impacts persisted well beyond the neonatal period, with emotional wellbeing remaining the most impacted domain in both the short-term (from delivery to 28 days following caregivers’ estimated date of delivery [EDD]) and longer-term (from 28 days to two years post-EDD). Conclusion: This study centralizes the caregiver perspective, which is imperative to improving maternal outcomes. Caregivers’ experiences (particularly of neonatal outcomes such as length of NICU stay) are integral to shaping maternal HRQoL. Increased awareness of sPTL signs and symptoms, and enhanced sPTL management strategies, are needed to improve both maternal and neonatal outcomes.