Parental communication about inherited conditions with young Children: Insights from genetic professionals in Portugal

Abstract

Genetic healthcare professionals (GHP) are key in supporting parents in communicating about inherited genetic conditions (IGC) with their young children. This study explored the attitudes, clinical practice and perceptions of Portuguese GHP’ regarding parental communication about IGC with young children. We conducted an observational and cross-sectional study with 32 GHP, 75 % of whom were women, and 37.5 % were aged 31–40 years old. The survey included sociodemographic and professional questions, along with 35 statements to be answered on a 4-point Likert scale (ranging from 1- strongly disagree to 4- strongly agree). Key findings show that GHP: (i) perceive that parents fear the impact of genetic information on their children's emotional wellbeing (3.53 ± 0.51), are receptive to support from GHP (3.16 ± 0.57), and should tailor communication to children's developmental stage (3.56 ± 0.50); (ii) report being available to support parents when asked (3.56 ± 0.62) and encourage parents to communicate openly (3.47 ± 0.57); and (iii) assess parents' level of understanding about the IGC (3.41 ± 0.56), raise parents' awareness of the importance of informing their children (3.28 ± 0.52), and support parents in adapting communication to the type of IGC (3.28 ± 0.58), and the child's developmental stage (3.22 ± 0.55). Results emphasize critical role of GHP in facilitating parent-child communication about IGC, highlighting their commitment to supporting these sensitive conversations.