Objective:
Research demonstrates the death of a child can be particularly traumatic for parents with long-lasting effects, yet the impact of losing an infant in the NICU remains understudied. This article aims to examine parent perceptions of emotional, social, occupational, familial, and physical impacts of their infant’s death in the NICU and to provide insight into the psychosocial needs of parents at this difficult time.
Method:
Twenty-nine mothers and 16 fathers representing 30 infants who died in a large, Midwestern, Level IV NICU, opted-in to interviews as part of a larger pilot study. Mothers and fathers participated an average of 38.45 (SD = 16.73, range = 3–70) and 37.06 (SD = 6.91, range = 3–62) months after death, respectively, and answered questions pertaining to the impact of infant loss. Three researchers used content analysis to produce themes describing the impact of infant loss on parents.
Results:
Parents described both negative and positive effects, underscoring both risk and resilience associated with bereavement. Findings highlight several similarities with families who experience the death of an older child, as well as some shared experiences between mothers and fathers. Results highlight both pain and growth in NICU parents following the death of their infant.
Conclusions:
Providers must thoughtfully incorporate family-centered communication, education, and preparation regarding bereavement, both as end of life approaches and following the death. Care should not conclude with the death but should continue to support parents and families as they navigate long-term grieving processes.
Implications for Impact Statement
Parents describe both positive and negative changes in their lives as a result of their infant’s death in the NICU, including occupational, social, emotional, and health-related changes. Parents also note differing grief trajectories and use of both formal and informal coping strategies. These findings reflect both pain and growth from their experience and highlights value of long-term bereavement care which may involve parent input, pediatric psychologists, and palliative care providers.
