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Challenges and strategies proposed by genetic health professionals to assist with family communication

Abstract

Hereditary genetic conditions have implications for the whole family and therefore genetic health professionals (GHPs) interact with multiple family members, sometimes individually and sometimes in aggregate. Family communication is important to ensure dissemination of genetic information to potentially affected relatives and to facilitate supportive family interactions around genetic testing and risk management decisions. Yet, little is known about how GHPs perceive and manage these interactions. A total of 73 GHPs working across Australian cancer genetic clinics participated in semi-structured focus groups or interviews to elucidate what aspects of family communication they found most challenging, the strategies they used, and whether current academic training provides sufficient guidance to address familial concerns. Patients’ lack of understanding about the importance of communicating genetic information to at-risk relatives was the most common challenge reported. GHPs reported that the patients’ concern for their families’ emotional responses as well as wider family system challenges (e.g. estrangement) affected family communication. Common strategies during consultations included structuring appointments logistically to account for family dynamics and post-consultation use of family letters and follow-up appointments. GHPs generally felt equipped with the skills and training provided to address patient concerns, but also desired upskilling in techniques relating to systemic family issues and behavioural change. Reflective practice strategies were requested by geneticists and nurses to foster therapeutic skill usage. Additional family therapy training while on the job may be beneficial in order to meet current challenges faced in clinical practice and can be provided as further professional development.

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Notes

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    It is standard practice to test the older generation first to identify whether they are a carrier of a BRCA1/2 pathogenic variant. If they are not a carrier, testing of their offspring is not required

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Acknowledgements

ALY is supported by the School of Psychology Margaret Stewart Fund Scholarship. CEW is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1143767). The Behavioural Sciences Unit at the Kids Cancer Centre is proudly supported by the Kids with Cancer Foundation.

Authors contributions

ALY made a substantial contribution to the study design, acquisition of data, analysis, interpretation, and revisions for important intellectual content. PNB contributed to the conception, acquisition of data, analysis interpretation and drafting the work for important intellectual content. KMT contributed to the study design, acquisition of data, analysis interpretation and drafting the work for important intellectual content. CEW contributed to the acquisition of data, analysis, interpretation, and revisions for important intellectual content. EH contributed to the acquisition of data, analysis, interpretation, and revisions for important intellectual content. RW contributed to the study design, acquisition of data, analysis interpretation and drafting the work for important intellectual content. The corresponding author has had full access to the data in the study and final responsibility for the decision to submit for publication.

Author information

Conflict of interest

KMT has been on the advisory board, chaired a meeting and given talks for AstraZeneca Pharmaceutical. ALY, PNB, CEW, EH, and RW declare that they have no conflict of interest.

Ethics approval

The project was approved by the University of Sydney Human Research Ethics Committee (HREC 2017/011), which covered the participating hospitals.

Informed consent

All procedures followed were in accordance with the University of Sydney Human Research Ethics Committee) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Signed or electronic consent was obtained from all participants. Informed consent was obtained from all participants for being included in the study.

Correspondence to Alison L. Young.

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