Parents’ own words: Adjustment and coping following infant death in the NICU.

Abstract

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.

Introduction to the special issue on palliative care, end-of-life, and bereavement: Integrating psychology into pediatric palliative care.

“…In addition to supporting parents in the context of their children’s suffering, a core tenet of PPC is supporting families leading up to, during, and after their child’s death. To that end, Clark et al (2021) use a qualitative design to elicit themes related to coping with infant loss, highlighting the importance of family-centered communication and continuity of support before, during, and after a child’s death. Representation of fathers within the study sample offers insight into differential support practices and needs between mothers and fathers following the death of their children.…”

“…Authors emphasize clinical implications and offer concrete recommendations for PPC clinicians, which we anticipate will be of the highest value to readers. These include conversational prompts and concrete strategies for intervening in cases where caregivers request nondisclosure (Brown et al, 2021), parent-driven recommendations for programming and direct support for bereaved parents (Clark et al, 2021; Dias et al, 2021; Henning et al, 2021), clinical intervention targets for parents during active treatment (Fisher et al, 2021), and guidance for providing culturally sensitive clinical services (Kentor et al, 2021; Lyon et al, 2021; Sample et al, 2021).…”