ArticleEuropean journal of human genetics : EJHG2019
Challenges and strategies proposed by genetic health professionals to assist with family communication.
Article in European journal of human genetics : EJHG, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.
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Who cites it
17 citing papers in PubMed, 1 synthesis or guideline pooled it, 36 citations in OpenAlex.
- Disclosure of genetic information to family members: a systematic review of normative documents.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Pooled it
- Family-oriented support in genetic counselling: a scoping review of clinical practice and psychotherapeutic interventions.European journal of human genetics : EJHG · 2026Review
- Family Leaders Navigate Burden to Communicate Risk during Cascade Screening after Sudden Cardiac Death in the Young.Public health genomics · 2026Article
- "Nobody listened to us for years": Parents' experiences of provider communication in the diagnostic odyssey.Molecular genetics and metabolism · 2025Article
- Addressing family communication in genetic counseling: A scoping review of process studies.Journal of genetic counseling · 2025Article
- Navigating family dynamics and ethical considerations in genetic diagnosis of pulmonary arterial hypertension: insights from in-depth semi-structured interviews.ERJ open research · 2025Article
- Genomic findings with familial implications: agenda setting in light of mainstreaming.Open research Europe · 2025Article
- Liminality between direct and family-mediated contact in the communication of genetic information to at-risk relatives.European journal of human genetics : EJHG · 2024Article
- Patient experiences and perceived value of genetic testing in inherited retinal diseases: a cross-sectional survey.Scientific reports · 2024Article
- Incorporating Genetic Testing Into the Care of Patients With Amyotrophic Lateral Sclerosis/Frontotemporal Degeneration Spectrum Disorders.Neurology. Clinical practice · 2023Article
- Development and early-stage evaluation of a patient portal to enhance familial communication about hereditary cancer susceptibility testing: A patient-driven approach.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Genetic counseling and diagnostic genetic testing for familial amyotrophic lateral sclerosis and/or frontotemporal dementia: A qualitative study of client experiences.Journal of genetic counseling · 2022Article
- Multiple approaches to enhancing cancer communication in the next decade: translating research into practice and policy.Translational behavioral medicine · 2021Article
- Disclosure of secondary findings in exome sequencing of 2480 Japanese cancer patients.Human genetics · 2021Article
- How to inform at-risk relatives? Attitudes of 1379 Dutch patients, relatives, and members of the general population.Journal of genetic counseling · 2020Article
- Article
- Genetic testing for hereditary cancer syndromes: patient recommendations for improved risk communication.Health expectations : an international journal of public participation in health care and health policy · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
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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Registered trials
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