Family communication about genomic sequencing: A qualitative study with cancer patients and relatives.

Smit, AK; Bartley, N; Best, MC; Napier, CE; Butow, P; Newson, AJ; Tucker, K; Ballinger, ML; Thomas, DM; Jacobs, C; Meiser, B; Goldstein, D; Savard, J; Juraskova, I; PiGeOn authorship group,

Family communication about genomic sequencing: A qualitative study with cancer patients and relatives.

Smit, AK Bartley, N Best, MC Napier, CE Butow, P Newson, AJ Tucker, K Ballinger, ML Thomas, DM Jacobs, C

Meiser, B Goldstein, D Savard, J Juraskova, I PiGeOn authorship group,

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Publisher:: Elsevier
Publication Type:: Journal Article
Citation:: Patient Education and Counseling, 2021, 104, (5), pp. 944-952
Issue Date:: 2021

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Field	Value	Language
dc.contributor.author	Smit, AK
dc.contributor.author	Bartley, N
dc.contributor.author	Best, MC
dc.contributor.author	Napier, CE
dc.contributor.author	Butow, P
dc.contributor.author	Newson, AJ
dc.contributor.author	Tucker, K
dc.contributor.author	Ballinger, ML
dc.contributor.author	Thomas, DM
dc.contributor.author	Jacobs, C https://orcid.org/0000-0002-9557-9080
dc.contributor.author	Meiser, B
dc.contributor.author	Goldstein, D
dc.contributor.author	Savard, J
dc.contributor.author	Juraskova, I
dc.contributor.author	PiGeOn authorship group,
dc.date.accessioned	2021-10-11T04:10:46Z
dc.date.available	2020-10-15
dc.date.available	2021-10-11T04:10:46Z
dc.date.issued	2021
dc.identifier.citation	Patient Education and Counseling, 2021, 104, (5), pp. 944-952
dc.identifier.issn	0738-3991
dc.identifier.issn	1873-5134
dc.identifier.uri	http://hdl.handle.net/10453/150990
dc.description.abstract	Objective This study explored family communication about undertaking genomic sequencing, and intentions to communicate pertinent heritable results to family members. Methods Semi-structured interviews were conducted with cancer patients (n = 53) and their relatives (n = 20) who underwent germline genome sequencing or molecular tumor testing. Interviews were audio-recorded, transcribed and analyzed using thematic analysis. Results Key themes relevant to family communication about undertaking sequencing included: perceiving family member interest, delaying discussion until results were received, having shared capacity to understand and cope, and having open communication in the family. Intended communication subsequent to receiving results was affected by: disease severity, risk management options, degree of closeness in the family, sense of responsibility, and potential adverse impacts on family. Resource and support needs varied based on the complexity of test results, health professionals’ availability, and disease severity. Unique subthemes were identified for specific subgroups. Conclusion Current findings support the need to assess the impact and resource needs specific to each clinical application of genomic sequencing. Practice implications Increasingly sophisticated and complex clinical genomic sequencing warrants development of family-centered interventions and resources to facilitate preference-sensitive communication about genomic sequencing, including disseminating relevant information to family members.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	Elsevier
dc.relation.ispartof	Patient Education and Counseling
dc.relation.isbasedon	10.1016/j.pec.2020.10.022
dc.rights	info:eu-repo/semantics/closedAccess
dc.subject	11 Medical and Health Sciences, 17 Psychology and Cognitive Sciences
dc.subject.classification	Public Health
dc.subject.mesh	Humans
dc.subject.mesh	Neoplasms
dc.subject.mesh	Communication
dc.subject.mesh	Family
dc.subject.mesh	Genomics
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Communication
dc.subject.mesh	Family
dc.subject.mesh	Genomics
dc.subject.mesh	Humans
dc.subject.mesh	Neoplasms
dc.subject.mesh	Qualitative Research
dc.title	Family communication about genomic sequencing: A qualitative study with cancer patients and relatives.
dc.type	Journal Article
utslib.citation.volume	104
utslib.location.activity	Ireland
utslib.for	11 Medical and Health Sciences
utslib.for	17 Psychology and Cognitive 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/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	closed_access	*
pubs.consider-herdc	false
dc.date.updated	2021-10-11T04:10:44Z
pubs.issue	5
pubs.publication-status	Published
pubs.volume	104
utslib.citation.issue	5

Abstract:

Objective This study explored family communication about undertaking genomic sequencing, and intentions to communicate pertinent heritable results to family members. Methods Semi-structured interviews were conducted with cancer patients (n = 53) and their relatives (n = 20) who underwent germline genome sequencing or molecular tumor testing. Interviews were audio-recorded, transcribed and analyzed using thematic analysis. Results Key themes relevant to family communication about undertaking sequencing included: perceiving family member interest, delaying discussion until results were received, having shared capacity to understand and cope, and having open communication in the family. Intended communication subsequent to receiving results was affected by: disease severity, risk management options, degree of closeness in the family, sense of responsibility, and potential adverse impacts on family. Resource and support needs varied based on the complexity of test results, health professionals’ availability, and disease severity. Unique subthemes were identified for specific subgroups. Conclusion Current findings support the need to assess the impact and resource needs specific to each clinical application of genomic sequencing. Practice implications Increasingly sophisticated and complex clinical genomic sequencing warrants development of family-centered interventions and resources to facilitate preference-sensitive communication about genomic sequencing, including disseminating relevant information to family members.

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http://hdl.handle.net/10453/150990