Table 1.

Interview topics

Main topics discussed with parents

Parents’ understanding of the causes of condition

How they found out about and responded emotionally to the existence of the condition in the family

Coping with the condition, practically and emotionally

Impact on and management of family life

How the genetic condition is discussed within the family generally

How, what, when they explained genetic risk to children and decisions relating to this

Children’s responses, questions and level of interest

Impact of knowledge on each family member’s behaviours and decisions

Available support and information – including from health‐care professionals, support groups and wider family

Family history and parents’ own experiences in relation to the condition

Preparing for the future

Main topics discussed with children and young people

Knowledge about condition

How, what and when they found out and associated emotions

How genetic condition is discussed within the family generally

Knowledge and use of relevant resources

Impact of condition on their life and other family member’s lives

Understanding of heredity and genetics generally and in relation to risk information about the genetic condition

Who children talk to about the condition (wider family, friends, school etc.)

Support mechanisms internal and external to the family

Understanding of and expectations for the future

Decision making and communication in the family generally and in relation to the condition

Views about what, when and by whom children should be told about a genetic health condition in the family

Effect on choices and decisions about the future (if appropriate)