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

Abstract

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.

Helping young children understand inherited cancer predisposition syndromes using bibliotherapy

“…Indeed, a recent study by Keenan et al. (2020) reported that for many genetic health professionals, facilitating parent–child communication about inherited conditions was challenging and resources or evaluated interventions to support this process were rare, and often unavailable. Moreover, the authors cited the importance of research into the development and evaluation of interventions which could assist genetic health professionals to support the parent–child communication process (Keenan et al., 2020).…”

Dilemmas when talking about Huntington's disease: A qualitative study of offspring and caregiver experiences in Norway

“…One of the major objectives for health care professionals, such as genetic counselors, when meeting caregivers affected by disease is to facilitate family communication. However, recent research suggests that there is uncertainty among genetic counselors about how to guide parents to talk with their children (Keenan et al, 2020 ). The in‐depth insights of the present study can be used to provide clarity and understanding about the many aspects of talking with offspring about HD.…”