Objectives: Little is known about the early stress experiences of parents of infants with serious life-limiting/life-threatening conditions during the initial months after discharge from hospital. The aim of the study was to measure change, and predictors of change, in parenting stress at the time of transition from hospital to home (T1) with a medically fragile infant, and after a 3-month period (T2).
Methods: Parents of infants identified as meeting ≥ 1 palliative care referral criterion were recruited in a Midwestern United States tertiary pediatric hospital (2012-2014) within 2 weeks of hospital discharge. A repeated measures design was used to assess change on a validated parenting stress inventory over the two timepoints (T1 and T2). Fifty-two parents (61 infants) participated at T1 and 44 (85%) at T2.
Results: On discharge (T1) stress was moderately high 3 months post discharge (T2) overall and domain-specific stress scores improved, except stress related to parent role functioning and participation in their child's medical care. Independent predictors of improvement in overall parenting stress scores (T2-T1) were being a younger parent and having experienced prior pregnancy-related loss.
Conclusions for practice: The time of discharge from hospital to home is often stressful for parents of medically fragile infants. Improvements were found during the first 3 months at home, but improvement was minimal for stress related to role function and providing medical care. Past experience with pregnancy-related loss and being younger were associated with improvement in stress across theoretical domains. Screening for stress should be included as part of routine pre- and post-neonatal intensive care unit discharge psychosocial assessments of parents caring for infants with serious illness to ensure their unique support needs continue to be met over time.
Keywords: Infant; Palliative care; Parenting; Psychological distress; Very low birth weight.
What is already known about the topic? Stress in parents of sick infants is well-documented in the post-birth hospitalization period. Early management of parent stress after a child is born with a life-limiting/life-threatening condition is critical in promoting healthy infant attachment and development.What this study adds? Parents of medically fragile infants experience notable stress during the initial months at home. Pre-hospital discharge attention to medical and psychosocial characteristics of infants and parents may help health care teams anticipate post-discharge parenting challenges and facilitate personalized home support strategies aimed at minimizing parent stress and poor parent–child outcomes.
© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.