Parents’ perspectives on the use of statistics to convey uncertainty in the NICU: a qualitative analysis

Objective: Explore NICU parents’ perspectives on how statistics are used to communicate prognostic uncertainty. Study design: A secondary qualitative grounded theory analysis of semi-structured interviews with parents of current and past NICU patients focusing on their experience with prognostic uncertainty. Results: Parents had varying opinions on the use of statistics. These views depended on many factors, including the motives for sharing statistics, their child’s clinical status, their own emotional state, and their relationship with the provider communicating the uncertainty. Depending upon how statistics were utilized, parents felt they could be helpful and desired at times, but also harmful and counterproductive at others. Parents also shared recommendations on how statistics should be utilized in communicating uncertainty. Conclusion: This study reveals an important parental perspective on communication for anyone caring for critically ill neonates. In sharing recommendations for communicating uncertainty with statistics, this study can help providers enhance relationships with parents.