Genetics professionals’ experiences of facilitating parent/child communication through the genetic clinic

• Published in: Journal of genetic counseling Vol. 29; no. 1; pp. 44 - 55
• Main Authors: Keenan, Karen F., McKee, Lorna, Miedzybrodzka, Zosia
• Format: Journal Article
• Language: English
• Published: United States Blackwell Publishing Ltd 01-02-2020
• Subjects: adult‐onset; Children; Children & youth; Clinical medicine; Communication; Communication skills; Coping strategies; Experts; family communication; Genetic analysis; genetic clinic; genetic counseling; Genetic diversity; genetic health professionals; genetic risk; Genetic susceptibility; inherited conditions; Medical personnel; parents; Parents & parenting; Professional attitudes; Professionals; Timing; Uncertainty; Variability; genetic counseling; genetic risk; adult-onset; genetic clinic; communication; family communication; inherited conditions; genetic health professionals; parents
• ISSN: 1059-7700; 1573-3599
• DOI: 10.1002/jgc4.1179

While guidelines advise genetic health professionals to support and encourage family communication about genetic risk, there can be professional uncertainty when advising parents about communication with children. We sought to explore genetic health professionals’ views and experiences of facilitating parent/child communication in clinical practice, particularly in relation to adult‐onset inherited conditions. Twenty‐three in‐depth interviews were conducted with United Kingdom genetic health professionals. Thematic analysis identified four main themes: offer professional involvement, encourage early disclosure, take a limited role, and challenges. Overall, our findings demonstrate a wide variation in genetic health professionals approaches to the provision of disclosure advice to parents, ranging from professionals who offered their communication skills and expertise, to those who took a limited role and reflected they were struggling, or even felt stuck. Giving tailored advice to parents about the timing of disclosure i.e. when to tell children, was a particular challenge because of the variability in children's maturity and coping styles. Nevertheless, we identified a range of strategies which were drawn upon by participants to facilitate parent/child communication in the genetic clinic. In conclusion, study results indicate that this remains a challenging and sensitive area, in which genetics professionals express a need for more resources and the clinical time to undertake this work. Further research is needed to develop and evaluate interventions which assist parent/child communication about serious inherited conditions and to help develop professionals’ confidence and skills in this area.