Elizabeth Enlow1,2,3, Laura J Faherty3,4, Sara Wallace-Keeshen5, Ashley E Martin6, Judy A Shea3,7, Scott A Lorch6,2,3. 1. Division of Neonatology, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania; elizabeth.enlow@cchmc.org. 2. Division of Neonatology, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania. 3. Leonard Davis Institute of Health Economics, Philadelphia, Pennsylvania; and. 4. Robert Wood Johnson Foundation Clinical Scholars Program. 5. School of Nursing, and. 6. Division of Neonatology, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania. 7. Division of General and Internal Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
Abstract
BACKGROUND AND OBJECTIVES: Transitioning premature infants from the NICU to home is a high-risk period with potential for compromised care. Parental stress is high, and families of low socioeconomic status may face additional challenges. Home visiting programs have been used to help this transition, with mixed success. We sought to understand the experiences of at-risk families during this transition to inform interventions. METHODS: Mothers of infants born at <35 weeks' gestation, meeting low socioeconomic status criteria, were interviewed by telephone 30 days after discharge to assess caregiver experiences of discharge and perceptions of home visitors (HVs). We generated salient themes by using grounded theory and the constant comparative method. Interviews were conducted until thematic saturation was achieved. RESULTS: Twenty-seven mothers completed interviews. Eighty-five percent were black, and 81% had Medicaid insurance. Concern about infants' health and fragility was the primary theme identified, with mothers reporting substantial stress going from a highly monitored NICU to an unmonitored home. Issues with trust and informational consistency were mentioned frequently and could threaten mothers' willingness to engage with providers. Strong family networks and determination compensated for limited economic resources, although many felt isolated. Mothers appreciated HVs' ability to address infant health but preferred nurses over lay health workers. CONCLUSIONS: Low-income mothers experience significant anxiety about the transition from the NICU to home. Families value HVs who are trustworthy and have relevant medical knowledge about prematurity. Interventions to improve transition would benefit by incorporating parental input and facilitating trust and consistency in communication.
BACKGROUND AND OBJECTIVES: Transitioning premature infants from the NICU to home is a high-risk period with potential for compromised care. Parental stress is high, and families of low socioeconomic status may face additional challenges. Home visiting programs have been used to help this transition, with mixed success. We sought to understand the experiences of at-risk families during this transition to inform interventions. METHODS: Mothers of infants born at <35 weeks' gestation, meeting low socioeconomic status criteria, were interviewed by telephone 30 days after discharge to assess caregiver experiences of discharge and perceptions of home visitors (HVs). We generated salient themes by using grounded theory and the constant comparative method. Interviews were conducted until thematic saturation was achieved. RESULTS: Twenty-seven mothers completed interviews. Eighty-five percent were black, and 81% had Medicaid insurance. Concern about infants' health and fragility was the primary theme identified, with mothers reporting substantial stress going from a highly monitored NICU to an unmonitored home. Issues with trust and informational consistency were mentioned frequently and could threaten mothers' willingness to engage with providers. Strong family networks and determination compensated for limited economic resources, although many felt isolated. Mothers appreciated HVs' ability to address infant health but preferred nurses over lay health workers. CONCLUSIONS: Low-income mothers experience significant anxiety about the transition from the NICU to home. Families value HVs who are trustworthy and have relevant medical knowledge about prematurity. Interventions to improve transition would benefit by incorporating parental input and facilitating trust and consistency in communication.
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