Fostering Hope and Acknowledging Uncertainty: Meeting Parents’ Needs and Preferences When Communicating Prognosis in Genetic Neurodevelopmental Conditions

Abstract

Abstract Purpose of Review We sought to summarise recent research on prognostication in genetic neurodevelopmental conditions, focusing on parent preferences for prognostic conversations. We further aimed to explore recommendations about communicating children’s prognoses with parents at the time of diagnosis and beyond. Recent Findings Our review revealed growing research on prognostic conversations in oncology settings and for conditions that are life-limiting; however, there remains little research in the context of genetic neurodevelopmental conditions. The literature indicates a shift from censoring prognosis towards open discussions emphasising predicted challenges and abilities. The little research that has been done shows that parents seek prognosis discussions tailored to their preferences, relating to the timing, depth, and mode of delivery of information. Divergent perspectives between parents and healthcare professionals complicate prognostic communication and may relate to the stance of the healthcare professional (such as preconceived views and biases), and gaps in their training or within evidence-based interventions. Summary There is a need for personalised, sensitive approaches to prognostic conversations with parents and to address societal biases that influence the stance and behaviours of healthcare professionals in those conversations. Future research should prioritise understanding that parental needs are diverse, improving communication strategies, and expanding information modalities. Focus should also be on reflexively identifying healthcare professional and societal stereotypical views on disability, mitigating biases for effective prognostic discussions with parents regarding genetic neurodevelopmental conditions.