Family Communication about Diagnostic Genetic Testing for Younger-Onset Dementia.

Poulton, A; Curnow, L; Eratne, D; Sexton, A

Family Communication about Diagnostic Genetic Testing for Younger-Onset Dementia.

Poulton, A Curnow, L Eratne, D Sexton, A

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Publisher:: MDPI
Publication Type:: Journal Article
Citation:: J Pers Med, 2023, 13, (4), pp. 621
Issue Date:: 2023-04-01

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Field	Value	Language
dc.contributor.author	Poulton, A
dc.contributor.author	Curnow, L
dc.contributor.author	Eratne, D
dc.contributor.author	Sexton, A https://orcid.org/0000-0001-8749-1639
dc.date.accessioned	2024-04-28T01:52:32Z
dc.date.available	2023-03-30
dc.date.available	2024-04-28T01:52:32Z
dc.date.issued	2023-04-01
dc.identifier.citation	J Pers Med, 2023, 13, (4), pp. 621
dc.identifier.issn	2075-4426
dc.identifier.issn	2075-4426
dc.identifier.uri	http://hdl.handle.net/10453/178420
dc.description.abstract	Younger-onset dementia (YOD) refers to onset before 65 years of age and may be associated with a genetic cause. Family communication surrounding any genetic risk is complex, and this process may be further complicated in a YOD context due to its effects on cognition, behaviour, and associated psychosocial consequences. This study aimed to investigate how individuals experience family communication about potential genetic risk and testing for YOD. Thematic analysis was performed on verbatim transcripts of nine semi-structured interviews undertaken with family members who attended a neurogenetics clinic due to a relative diagnosed with YOD. The interviews explored the participants' experiences of learning that YOD might be inherited and the ensuing family communication about genetic testing. Four key themes emerged: (1) a clinical diagnostic odyssey was common and could be a motivator for genomic testing, (2) pre-existing family tension and/or disconnection was a common barrier, (3) family members' autonomy was considered, and (4) avoidant coping strategies influenced communication. Communication regarding potential YOD genetic risk is a complicated process and may be influenced by pre-existing family dynamics, individual coping mechanisms, and a desire to promote autonomy in relatives. To promote effective risk communication, genetic counsellors should pre-emptively address family tensions that may be exacerbated in the context of genetic testing for YOD, with awareness that family strain during a preceding period of diagnostic odyssey is common. Genetic counsellors can offer psychosocial support to facilitate coping with this tension in an adaptive way. The findings also indicated the importance of extending genetic counselling support to relatives.
dc.format	Electronic
dc.language	eng
dc.publisher	MDPI
dc.relation.ispartof	J Pers Med
dc.relation.isbasedon	10.3390/jpm13040621
dc.rights	info:eu-repo/semantics/openAccess
dc.subject.classification	3205 Medical biochemistry and metabolomics
dc.subject.classification	3206 Medical biotechnology
dc.subject.classification	3214 Pharmacology and pharmaceutical sciences
dc.title	Family Communication about Diagnostic Genetic Testing for Younger-Onset Dementia.
dc.type	Journal Article
utslib.citation.volume	13
utslib.location.activity	Switzerland
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.date.updated	2024-04-28T01:52:30Z
pubs.issue	4
pubs.publication-status	Published online
pubs.volume	13
utslib.citation.issue	4

Abstract:

Younger-onset dementia (YOD) refers to onset before 65 years of age and may be associated with a genetic cause. Family communication surrounding any genetic risk is complex, and this process may be further complicated in a YOD context due to its effects on cognition, behaviour, and associated psychosocial consequences. This study aimed to investigate how individuals experience family communication about potential genetic risk and testing for YOD. Thematic analysis was performed on verbatim transcripts of nine semi-structured interviews undertaken with family members who attended a neurogenetics clinic due to a relative diagnosed with YOD. The interviews explored the participants' experiences of learning that YOD might be inherited and the ensuing family communication about genetic testing. Four key themes emerged: (1) a clinical diagnostic odyssey was common and could be a motivator for genomic testing, (2) pre-existing family tension and/or disconnection was a common barrier, (3) family members' autonomy was considered, and (4) avoidant coping strategies influenced communication. Communication regarding potential YOD genetic risk is a complicated process and may be influenced by pre-existing family dynamics, individual coping mechanisms, and a desire to promote autonomy in relatives. To promote effective risk communication, genetic counsellors should pre-emptively address family tensions that may be exacerbated in the context of genetic testing for YOD, with awareness that family strain during a preceding period of diagnostic odyssey is common. Genetic counsellors can offer psychosocial support to facilitate coping with this tension in an adaptive way. The findings also indicated the importance of extending genetic counselling support to relatives.

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http://hdl.handle.net/10453/178420