Parents’ Responses to Stress in the Neonatal Intensive Care Unit

Parental stress resulting from experiences with infants hospitalized in the NICU is well documented.1–5 Stress emanating from the birth of a premature or sick neonate has received considerable attention and is associated with concurrent parental anxiety and depression.1,6–9 Less well studied is the relationship of parental NICU stress with fatigue and sleep disruption. Lee and others report high rates of sleep disturbance, including average sleep duration less than 7 hours/night, in mothers of infants hospitalized in the NICU, as well as elevated fatigue and reduced wellbeing.10,11 The National Sleep Foundation cites 7–8 hours/night as the basic sleep need in adults.12 Sleep is a particular concern given the prevalence of postpartum sleep problems (57.7%) and complex relationship between postpartum sleep and depression.13 Parental stress emanating from the NICU experience is important, potentially impacting parenting behavior as well as producing long term emotional problems and health alteration. Early work by Miles14 provides a model of pathways influencing parental responses and parenting premature infant. Parent stress, anxiety, depression, and fatigue alter parenting behavior and perception of parental competence, parent-infant interaction, and ultimately infant outcomes such as cognitive development, emotional regulation, and health.4,15–19 Miles7 identified increased odds of depression related to parental role alteration and worry about child health among NICU parents. In this same study, although depression declined over time following the infant’s discharge from the NICU, 13% of mothers remained depressed 27 months following birth and individual trajectories were noted. In work by Holditch-Davis and others individual patterns of maternal distress following the birth a premature infant did not consistently decline over time and there were distinct groups of mothers with differing trajectories of distress and subsequent effects on parenting.1 Combined, these findings not only document stress experienced by parents of NICU infants but also highlight emotional consequences and the individual nature of parent response to the NICU experience. Notably the NICU experience is associated with long term parent emotional effects. Research suggests parent responses are not limited to the period of hospitalization and that the NICU experience is associated with disorders such as acute stress disorder (ASD) and post-traumatic stress disorder (PTSD).20,21 In one study 15% of mothers and 8% of fathers demonstrated evidence of PTSD when evaluated 30 days after their infants’ NICU admission.22 Mothers of preterm infants demonstrate significant stress reactions 6 months following the infants’ expected due date.20 and in another study mothers continued to experience distress and evidenced alterations in parenting 24 months after the infant’s due date.1 When compared with low-income mothers of healthy infants, low-income NICU mothers demonstrated an increased rate of ASD (3% vs. 23%).23 Evidence suggests that emotional stress may not abate over time and that parents are at risk for delayed response.4,22–24 Further, the pattern of stress experienced may differ for mothers and fathers. In a study of PTSD occurrence following parental NICU experience, measured using the Stanford Acute Stress Reaction Questionnaire, fathers had increased PTSD scores at four months following their child’s birth. In this same study 33% of fathers, compared with 9% of mothers, met criteria for diagnosis of PTSD.24 Based on current knowledge, evaluation of parents during infant NICU hospitalization is needed to assess current responses to stress associated with the NICU experience and to identify parents at risk for extended physical and emotional consequences. Such clinical evaluation requires instrumentation that not only is both psychometrically solid but also offers straightforward administration and scoring as well as providing population norms for comparison. An instrument that meets psychometric measurement requirements must be valid and reliable. Instruments available from the NIH funded Patient Reported Outcomes Measurement Information System (PROMIS) are valid, reliable, and efficient and meet these requirements.25–27 The purpose of this study was to test the relationship between stress associated with hospitalization of an infant in the neonatal intensive care unit (NICU) and parent responses. Studied parent responses were anxiety, depression, fatigue, and sleep disruption measured using PROMIS (Patient Reported Outcomes Measurement Information System) instruments. Research questions included: (1) What are the relationships among parental sources of stress (infant behavior and appearance, NICU sights and sounds, and alteration of parental role)? (2) What are the relationships among parental responses to NICU stress (sleep disturbance, fatigue, anxiety, and depression)? (3) What is the relationship of NICU parent stress (infant behavior and appearance, NICU sights and sounds, and alteration of parental role) with anxiety, depression, fatigue, and sleep disruption?