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

Eur J Hum Genet. 2019 Nov;27(11):1630-1638. doi: 10.1038/s41431-019-0447-9. Epub 2019 Jun 12.

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Australia
  • Communication*
  • Cross-Sectional Studies
  • Family*
  • Genetic Services
  • Genetic Testing
  • Health Personnel*
  • Humans
  • Neoplasms / genetics
  • Nurses
  • Physician's Role*
  • Physicians
  • Referral and Consultation
  • Risk Assessment