Genetic health professionals' facilitation of communication between parents and young children about inherited genetic conditions: A scoping review

Abstract

Genetics healthcare professionals (GHPs) play a key role in facilitating the communication from parents to young children about inherited genetic conditions (IGCs). This scoping review aimed to map the existing literature on GHPs' experiences regarding parent-children communication about IGCs. In this context, GHPs include clinicians who have specific genetics training (e.g., genetic counselors, genetic nurses, and clinical geneticists) and clinicians who have experience with caring for families with IGCs (e.g., other medical doctors and nurses). Four electronic databases were searched (PsycInfo, Scopus, PubMed, and all the Web of Science Core Collection databases), from which five eligible studies were identified. Studies were eligible if they focused on GHPs' perspectives on parent-children communication about IGCs. Included studies were published between 2010 and 2020. Main findings suggest that (i) there is a scarcity of literature exploring GHPs' experiences; (ii) GHPs feel a sense of responsibility in facilitating communication between parents and children regarding IGCs; (iii) GHPs commonly assess family dynamics and utilize educational resources to support parent–children communication; and (iv) GHPs recognize the need for additional training to better support parents in communicating with their children about IGCs, with genetic counselors reporting more extensive preparation in this area. Further research is needed to gain a deeper understanding of the roles and skills required of GHPs to facilitate effective communication between parents and their young children about IGCs. To better support parents in discussing IGCs with their children, GHPs would benefit from additional training in specific counseling skills, family dynamics, and communication, with an even greater need expressed by those who are not genetic counselors.