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

Turbitt, E; Callinan, E; Shakes, P; McEwen, A; Amor, DJ

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

Turbitt, E

Callinan, E Shakes, P McEwen, A

Amor, DJ

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Publisher:: SPRINGERNATURE
Publication Type:: Journal Article
Citation:: Current Developmental Disorders Reports, 2024, 11, (1), pp. 21-31
Issue Date:: 2024-03-01

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Field	Value	Language
dc.contributor.author	Turbitt, E https://orcid.org/0000-0002-6650-9702
dc.contributor.author	Callinan, E
dc.contributor.author	Shakes, P
dc.contributor.author	McEwen, A https://orcid.org/0000-0001-8705-1190
dc.contributor.author	Amor, DJ
dc.date.accessioned	2024-09-23T04:09:00Z
dc.date.available	2024-09-23T04:09:00Z
dc.date.issued	2024-03-01
dc.identifier.citation	Current Developmental Disorders Reports, 2024, 11, (1), pp. 21-31
dc.identifier.issn	2196-2987
dc.identifier.issn	2196-2987
dc.identifier.uri	http://hdl.handle.net/10453/180916
dc.description.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.
dc.language	English
dc.publisher	SPRINGERNATURE
dc.relation.ispartof	Current Developmental Disorders Reports
dc.relation.isbasedon	10.1007/s40474-024-00291-1
dc.rights	info:eu-repo/semantics/openAccess
dc.subject.classification	5201 Applied and developmental psychology
dc.subject.classification	5202 Biological psychology
dc.subject.classification	5203 Clinical and health psychology
dc.title	Fostering Hope and Acknowledging Uncertainty: Meeting Parents’ Needs and Preferences When Communicating Prognosis in Genetic Neurodevelopmental Conditions
dc.type	Journal Article
utslib.citation.volume	11
pubs.organisational-group	University of Technology Sydney
pubs.organisational-group	University of Technology Sydney/Faculty of Health
pubs.organisational-group	University of Technology Sydney/Faculty of Health/Graduate School of Health
pubs.organisational-group	University of Technology Sydney/Faculty of Health/Graduate School of Health/GSH.Genetic Counselling
utslib.copyright.status	open_access	*
dc.rights.license	This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0). To view a copy of this license, visit https://creativecommons.org/licenses/by/4.0/
dc.date.updated	2024-09-23T04:08:58Z
pubs.issue	1
pubs.publication-status	Published
pubs.volume	11
utslib.citation.issue	1

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.

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http://hdl.handle.net/10453/180916