The new normal: parental use of online health communities in the NICU

Background The aim of this study was to identify if and why NICU families use online health communities (OHCs) and to assess how participation in these virtual spaces impacts relationships between parents and their child’s medical team. Methods Surveys were administered to eligible persons. Quantitative analysis was conducted using standard statistical methods. Publicly accessible posts from the platform Reddit were aggregated and analyzed for recurring themes. Results In all, 58.3% ( n = 141) of NICU parents surveyed endorsed OHC use, primarily for the purpose of connecting with other NICU families and alleviating distress regarding their child’s health. Risks of OHCs as discussed in previous studies including health information privacy and medical misinformation were similarly identified. However, parents did not report a harmful association between OHC use and their relationship with their child’s providers, with only 2.8, 4.3, and 2.8% of participants reporting an overall negative effect of OHC use on communication, trust, and confidence, respectively. Conclusions OHCs are a commonly used resource that help NICU families build communities and reduce anxiety. These data suggest that OHCs do not inherently pose a threat to the parent–provider relationship and should be validated by the medical team as a valuable potential resource, while acknowledging the legitimate risks that exist. Impact Use of OHCs is increasingly common among NICU parents; however, it has been met with concern by many medical professionals. Existing literature has not yet explored the effect on dynamics in the NICU. Overall, our data show that OHCs have become a vital resource for families looking to build community among NICU parents and reduce anxiety. Though risks do exist around patient privacy and access to medical misinformation, fears regarding the impact of OHC use on parent–provider relationships may be largely unfounded. By using data to demonstrate how OHCs benefit the NICU parent experience, we hope to reframe OHC use and allow physicians to validate engagement and therefore mitigate legitimate concerns.