Family communication and results disclosure after germline sequencing: A mixed methods study.

Harrison, C; Bartley, N; Jacobs, C; Best, M; Vatter, S; Meiser, B; Ballinger, ML; Thomas, DM; Butow, P; members of the PiGeOn Project,

Family communication and results disclosure after germline sequencing: A mixed methods study.

Harrison, C Bartley, N

Jacobs, C

Best, M Vatter, S Meiser, B Ballinger, ML Thomas, DM Butow, P members of the PiGeOn Project,

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Publisher:: Elsevier
Publication Type:: Journal Article
Citation:: Patient Educ Couns, 2023, 114, pp. 107800
Issue Date:: 2023-09

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Field	Value	Language
dc.contributor.author	Harrison, C
dc.contributor.author	Bartley, N https://orcid.org/0000-0001-9052-1616
dc.contributor.author	Jacobs, C https://orcid.org/0000-0002-9557-9080
dc.contributor.author	Best, M
dc.contributor.author	Vatter, S
dc.contributor.author	Meiser, B
dc.contributor.author	Ballinger, ML
dc.contributor.author	Thomas, DM
dc.contributor.author	Butow, P
dc.contributor.author	members of the PiGeOn Project,
dc.date.accessioned	2023-09-06T01:36:02Z
dc.date.available	2023-05-17
dc.date.available	2023-09-06T01:36:02Z
dc.date.issued	2023-09
dc.identifier.citation	Patient Educ Couns, 2023, 114, pp. 107800
dc.identifier.issn	0738-3991
dc.identifier.issn	1873-5134
dc.identifier.uri	http://hdl.handle.net/10453/171938
dc.description.abstract	OBJECTIVE: Research on family communication of germline genome sequencing (GS) results (versus of genetic results after targeted genetic testing) is still emerging, yet potentially complex results increase the importance of communicating risk to relatives. Promoting equity by ensuring patients have sufficient health literacy to interpret results is important in this context. This study aimed to identify cancer patients' perceived importance of result disclosure, predictors of perceptions, and perspectives on family communication. METHODS: This explanatory-sequential, cross-sectional mixed-methods study involved participants (n = 246) completing a questionnaire and (n = 20) a semi-structured interview. Ordinal logistic regressions determined associations between potential predictors and perceived importance of result disclosure. Interview transcripts were analysed thematically using a constant-comparative approach. RESULTS: More participants intended disclosing to nuclear (77.4%) than to extended family (42.7%). More than half (59.3%) felt results were family information; 62.7% believed it was important to disclose results to family members. Nuclear and extended family communication scores and education level were significantly positively associated with perceived importance of disclosure (p < 0.05). Six qualitative themes were identified: i) Responsibility to inform, ii) Choice, iii) Autonomy, iv) Family Communication, v) Significance of results, and vi) Health professional role. CONCLUSION: Low health literacy and family conflict can complicate communication of GS results. Patients seek clear, interpretable information in a format they can easily communicate. PRACTICE IMPLICATIONS: Healthcare professionals can facilitate discussion of GS results by offering written information, encouraging disclosure, exploring existing family dynamics and communication patterns, and offering strategies to improve family communication. Centralised genetic communication offices and chatbots can also be helpful.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	Elsevier
dc.relation.ispartof	Patient Educ Couns
dc.relation.isbasedon	10.1016/j.pec.2023.107800
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	11 Medical and Health Sciences, 17 Psychology and Cognitive Sciences
dc.subject.classification	Public Health
dc.subject.classification	4203 Health services and systems
dc.subject.mesh	Humans
dc.subject.mesh	Disclosure
dc.subject.mesh	Cross-Sectional Studies
dc.subject.mesh	Communication
dc.subject.mesh	Genetic Testing
dc.subject.mesh	Family
dc.subject.mesh	Humans
dc.subject.mesh	Cross-Sectional Studies
dc.subject.mesh	Communication
dc.subject.mesh	Disclosure
dc.subject.mesh	Family
dc.subject.mesh	Genetic Testing
dc.title	Family communication and results disclosure after germline sequencing: A mixed methods study.
dc.type	Journal Article
utslib.citation.volume	114
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
utslib.copyright.status	open_access	*
dc.date.updated	2023-09-06T01:36:00Z
pubs.publication-status	Published
pubs.volume	114

Abstract:

OBJECTIVE: Research on family communication of germline genome sequencing (GS) results (versus of genetic results after targeted genetic testing) is still emerging, yet potentially complex results increase the importance of communicating risk to relatives. Promoting equity by ensuring patients have sufficient health literacy to interpret results is important in this context. This study aimed to identify cancer patients' perceived importance of result disclosure, predictors of perceptions, and perspectives on family communication. METHODS: This explanatory-sequential, cross-sectional mixed-methods study involved participants (n = 246) completing a questionnaire and (n = 20) a semi-structured interview. Ordinal logistic regressions determined associations between potential predictors and perceived importance of result disclosure. Interview transcripts were analysed thematically using a constant-comparative approach. RESULTS: More participants intended disclosing to nuclear (77.4%) than to extended family (42.7%). More than half (59.3%) felt results were family information; 62.7% believed it was important to disclose results to family members. Nuclear and extended family communication scores and education level were significantly positively associated with perceived importance of disclosure (p < 0.05). Six qualitative themes were identified: i) Responsibility to inform, ii) Choice, iii) Autonomy, iv) Family Communication, v) Significance of results, and vi) Health professional role. CONCLUSION: Low health literacy and family conflict can complicate communication of GS results. Patients seek clear, interpretable information in a format they can easily communicate. PRACTICE IMPLICATIONS: Healthcare professionals can facilitate discussion of GS results by offering written information, encouraging disclosure, exploring existing family dynamics and communication patterns, and offering strategies to improve family communication. Centralised genetic communication offices and chatbots can also be helpful.

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http://hdl.handle.net/10453/171938