Table 3.

Participants’ suggestions for genetic counsellors

Suggestion	Rationale
More proactive follow-up of families at key stages	• To allow genetic counsellors to aid the disclosure process • For mothers to feel more supported throughout • To improve the relationship between the genetic counsellor and the family • To make families more aware of the service
Sending written information and advice to the mothers and daughters when they reach specific ages	• To provide mothers with up to date information prior to disclosure to their daughters
Genetic counselling appointment to be proactively offered to the daughter (at around age 14)	• To aid the disclosure of reproductive information and options • To help create time for the daughter to process the information ahead of deciding about carrier testing
Genetic counselling appointment offered to the mothers	• To help address the mothers’ own feelings of carrier guilt and blame