Table 3.

Purposes for follow up identified by genetic counsellors and intensivists.

Intended purpose for follow up		Illustrative quote(s)	Raised by
Information needs	As an opportunity for parents to ask questions	“I think to have that one-on-one time is a little bit more relaxed and conducive to having a conversation. I think when there’s a number of people sitting around or standing around the parents, they kind of find it hard to formulate questions and think what they want to ask. So I will do a follow up…” [GC 1, 1-10 rGS cases seen] “…it’s an opportunity to…answer any questions…” [Intensivist 2]	Both
	To reiterate information delivered at pre-test counselling	“Sometimes we’ll just ask if they want to go over events again, if they understand everything that happened…” [Intensivist 1] “…when we are following up a family after that initial results appointment, so say in the next few days, we often are playing the role of reiterating some of that information, some of the medical information…” [GC 7, 11-20 rGS cases seen]	Both
	To check understanding and correct misunderstanding	“…they may not have taken in anything or much of what we’ve said at the results appointment, so it’s to check that, what they’ve understood, if they need more information…” [GC 3, 21-50 rGS cases seen] “…it’s an opportunity to kind of clarify any misunderstandings…” [Intensivist 2]	Both
	To discuss reproductive planning and recurrence risk	“…with that 6-week follow up after a loss or something, we always use that appointment not just to check in how they are emotionally, but to talk about recurrence risk and what it may mean for future pregnancies and things like that, so they’re sort of generally [at] a point where they’re ready to start thinking about the possibility of that, or they’re wanting to know a bit more information and help them move forward.” [GC 1, 1-10 rGS cases seen]	GCs
	To discuss the diagnosis in further detail	“…they might have been given the result, it might have been on the ward or not in the usual setting, and so the purpose would be to see them again to talk more about what’s known about the condition that the child has…” [GC 2, 11-20 rGS cases seen]	GCs
Psychological needs	For emotional and psychological support	“[The purpose of follow up is] entirely psychosocial…it’s support…” [GC 4, 11-20 rGS cases seen]	GCs
	To check for signs of pathological grief	“…it’s an opportunity for us to check in with the families, firstly, to see…whether they have any signs of, in a sense, pathological grief…” [Intensivist 2]	Intensivists
	For rapport building and to establish a relationship	“…a bit of a courtesy follow up, bit of rapport-building, relationship-establishing, that sort of stuff. So that they know that they’ve got some support and a contact person if they’ve got any questions later.” [GC 1, 1-10 rGS cases seen]	GCs
Medical needs	To look for a diagnosis, if rGS was negative	“…some of [the negative cases] had already had review appointments made with our team…so [the medical and research team] met…to discuss all of those cases in terms of re-looking or reanalysing some of the data…” [GC 2, 11-20 rGS cases seen]	GCs
	For surveillance screening for particular conditions	“…a lot of care coordination…a lot of it’s surveillance, so known problems that we know come on over time.” [Intensivist 3]	Intensivists
	To coordinate future follow up	“…it’s an opportunity to…ensure that they’ve got sufficient follow ups in the future…” [Intensivist 2]	Intensivists