“This ISN’T a Vacation”: "Insensitive" Comments within Neonatal Intensive Care Unit Experiences

Background and Purpose: Online communities, particularly platforms like Reddit, serve as an important space for communities to seek support and engage in discussions about traumatic life experiences. For Neonatal Intensive Care Unit (NICU) parents, these platforms provide an avenue to express their emotional experiences, including sharing “insensitive” comments they received during their NICU stays and how these interactions impacted their wellbeing. Despite the significance of these discussions, there is limited research on the content and emotional impacts of these interactions. Therefore, the aim of this study is to assess the content and parental reactions of “insensitive” comments said to NICU parents from two Reddit forum posts.

Methods: Comments were extracted from the community, r/NICUParents, on Reddit into Microsoft Excel and manually coded utilizing an inductive qualitative approach. These posts were cleaned to exclude posts with missing data. A total of 159 comments were included in the final thematic analysis. In-vivo coding was utilized as a first cycle coding method to capture users' language and descriptions of their experiences. This was followed by second-cycle coding to identify patterns and generate themes.

Findings: Findings identified key themes that included minimizing psychological impact, assuming luck, and spiritual bypassing. Users reported comments from family members, such as mothers-in-law and siblings, that minimized their NICU experience by characterizing it as a vacation from motherhood — implying that because others were caring for their child, parents should feel relieved rather than stressed. Users also described receiving dismissive comparisons from fellow NICU mothers who invalidated what others were going through. Healthcare staff, including nurses, were also identified as sources of invalidating users’ feelings, such as urging mothers to sleep, even though sleep was often unattainable for NICU parents who remained awake out of worry for their child. Several posts emphasized the emotional harm and trauma created by these comments and the need for greater awareness and sensitivity from support systems.

Conclusion and Implications: These findings highlight the need for developing improved supportive communication frameworks and resources for NICU family support systems and interdisciplinary neonatal care teams. For social work practice, this includes preparing and educating family members and interdisciplinary care teams on how to communicate in ways that validate, rather than minimize, parental experiences. Maternal and neonatal social workers are well-positioned to implement educational initiatives, model supportive communication, and advocate for practices that help support systems understand the gravity of their language to aid in promoting NICU parent wellbeing.