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

Turbitt, Erin, Callinan, Elizabeth, Shakes, Pieta, McEwen, Alison, and Amor, David J. (2024) Fostering Hope and Acknowledging Uncertainty: Meeting Parents' Needs and Preferences When Communicating Prognosis in Genetic Neurodevelopmental Conditions. Current Developmental Disorders Reports, 11. pp. 21-31.

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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.

Item ID: 81711
Item Type: Article (Research - C1)
ISSN: 2196-2987
Keywords: Prognosis, Genetic neurodevelopmental condition, Uncertainty, Communication, Paediatrics, Parents
Copyright Information: Open Access. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit
Date Deposited: 01 Mar 2024 02:44
FoR Codes: 42 HEALTH SCIENCES > 4205 Nursing > 420599 Nursing not elsewhere classified @ 25%
42 HEALTH SCIENCES > 4203 Health services and systems > 420307 Health counselling @ 50%
42 HEALTH SCIENCES > 4299 Other health sciences > 429999 Other health sciences not elsewhere classified @ 25%
SEO Codes: 20 HEALTH > 2001 Clinical health > 200101 Diagnosis of human diseases and conditions @ 30%
20 HEALTH > 2001 Clinical health > 200199 Clinical health not elsewhere classified @ 70%
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