Approaching discussions about genetics with palliative patients and their families: a qualitative exploration with genetic health professionals.

White, S; Turbitt, E; Phillips, JL; Jacobs, C

Approaching discussions about genetics with palliative patients and their families: a qualitative exploration with genetic health professionals.

White, S Turbitt, E

Phillips, JL Jacobs, C

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Publisher:: SPRINGERNATURE
Publication Type:: Journal Article
Citation:: Eur J Hum Genet, 2022, pp. 1-8
Issue Date:: 2022-09-05

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Field	Value	Language
dc.contributor.author	White, S
dc.contributor.author	Turbitt, E https://orcid.org/0000-0002-6650-9702
dc.contributor.author	Phillips, JL
dc.contributor.author	Jacobs, C https://orcid.org/0000-0002-9557-9080
dc.date.accessioned	2022-11-30T04:35:31Z
dc.date.available	2022-08-15
dc.date.available	2022-11-30T04:35:31Z
dc.date.issued	2022-09-05
dc.identifier.citation	Eur J Hum Genet, 2022, pp. 1-8
dc.identifier.issn	1018-4813
dc.identifier.issn	1476-5438
dc.identifier.uri	http://hdl.handle.net/10453/163927
dc.description.abstract	Genetic information can provide clinical benefits to families of palliative patients. However, integration of genetics into mainstream medicine has not focused on palliative populations. We explored the views and experiences of genetic health professionals in addressing genetics with palliative patients, and their families. We conducted an interpretive descriptive qualitative study with genetic counsellors and clinical geneticists using interviews and focus groups. Findings were generated using reflexive thematic analysis. Three themes were identified: (1) Focusing on the benefit to the family, (2) The discomfort of addressing genetics near end-of-life and (3) "It's always on the back-burner": Challenges to getting genetics on the palliative care agenda. Participants discussed the familial benefit of genetics in palliative care alongside the challenges when patients are near end-of-life. They perceived genetics as low priority for palliative care due to misunderstandings related to the value of genetic information. Acknowledging the challenges in the palliative care context, genetic health professionals want improved service leadership and awareness of the familial benefits of palliative genetic testing. Strong leadership to support genetic health professionals in addressing these barriers is needed for the benefits of genetic information to be realised.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	SPRINGERNATURE
dc.relation.ispartof	Eur J Hum Genet
dc.relation.isbasedon	10.1038/s41431-022-01179-7
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	0604 Genetics, 1103 Clinical Sciences
dc.subject.classification	Genetics & Heredity
dc.title	Approaching discussions about genetics with palliative patients and their families: a qualitative exploration with genetic health professionals.
dc.type	Journal Article
utslib.location.activity	England
utslib.for	0604 Genetics
utslib.for	1103 Clinical Sciences
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Strength - CHT - Health Technologies
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
pubs.organisational-group	/University of Technology Sydney/Centre for Health Technologies (CHT)
utslib.copyright.status	open_access	*
dc.date.updated	2022-11-30T04:35:30Z
pubs.publication-status	Published online

Abstract:

Genetic information can provide clinical benefits to families of palliative patients. However, integration of genetics into mainstream medicine has not focused on palliative populations. We explored the views and experiences of genetic health professionals in addressing genetics with palliative patients, and their families. We conducted an interpretive descriptive qualitative study with genetic counsellors and clinical geneticists using interviews and focus groups. Findings were generated using reflexive thematic analysis. Three themes were identified: (1) Focusing on the benefit to the family, (2) The discomfort of addressing genetics near end-of-life and (3) "It's always on the back-burner": Challenges to getting genetics on the palliative care agenda. Participants discussed the familial benefit of genetics in palliative care alongside the challenges when patients are near end-of-life. They perceived genetics as low priority for palliative care due to misunderstandings related to the value of genetic information. Acknowledging the challenges in the palliative care context, genetic health professionals want improved service leadership and awareness of the familial benefits of palliative genetic testing. Strong leadership to support genetic health professionals in addressing these barriers is needed for the benefits of genetic information to be realised.

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http://hdl.handle.net/10453/163927