Background UK guidelines advise genetics professionals to support and encourage family communication about genetic risk. However, parents can experience a lack of information and support from healthcare professionals about sharing information with children about serious genetic conditions.
Aims The aim of our study was to explore genetics professionals’ experiences in clinical practice and to identify strategies that effectively foster communication with young people.
Methods Clinic observations; interviews with young people, parents and professionals; collaborations with patient groups. We used two adult-onset inherited disorders as examples: Huntington’s disease (HD) and Familial Hypercholesterolaemia.
Results All genetics professionals felt that facilitating family communication about serious genetic conditions was an important aspect of their role, although one third reported giving limited advice and lacked confidence in this area, supporting parent’s accounts. Nevertheless, we identified ‘successful’ strategies and frameworks which genetics professionals draw upon to facilitate parent/child communication, which included: (1) Initiating a discussion about how/when to tell children; (2) Offering to tell children directly (with or without parent present); (3) Offering access to a quick follow-up appointment e.g. after parental disclosure and (4) Accepting ambiguity as there maybe “no clear cut answers”. We helped patient groups, including HDYO, to develop evidence based materials for children and young people.
Conclusions Healthcare professionals working with families affected by HD have the opportunity to raise the issue of young people’s needs and support parents with disclosure to children about HD. Tips for raising these issues and available resources will be outlined.
- Family communication
- HD clinic
- Young People