There was a near consensus among the women as to what planning meant, with the majority simply describing planning pregnancy as intentionally wanting or trying to become pregnant. For example, one teenager saw pregnancy planning characterised by the US sitcom Friends (FG106):
FG106: it really reminds me of Chandler and Monica off Friends, doesn’t it, like they are trying for a baby and stuff that’s what normally planning a pregnancy means. (18 year old)
Others defined the meaning of planning pregnancy as making the decision to have children and the majority of women included deliberation, suggesting planning involved thinking about what might be involved in preparing for pregnancy, as well as accessing information to support coping and caring for a future baby. For women who considered planning as a structured activity this involved getting to know everything that could happen including ‘the worst case scenario’. For these women, planning was a series of stages, and involved review of treatment and epilepsy stability. This was extended further by one teenager (FG103, 18 year old) who saw planning as being guided through the process, by talking about and doing everything advised to “minimise absolutely every single risk”. This point was illustrated by another participant as she retold her experience of termination of her second pregnancy following prenatal diagnosis of spina bifida (FG23). The 43 year old participant described her experience of planning her third pregnancy as involving getting her medication “sorted” and being taken off certain drugs to lessen the risk:
FG23: I think I had it planned more or less before I went with [neurologist] and he did this plan, and he said, we’ll take you off so much then, and we’ll withdraw you off them, and I was given a written plan of what to do, in a book. So, that was to me, was more sensible, and I had more. More comfort in the fact that. Well at least, I’m being sensible here. Before I go ahead with this pregnancy this time…
FG23 emphasises two important defining features of pregnancy planning: the first, the potential to plan before commencing the formal process of planning with a clinician; and the second, requiring agreement between parties, the patient, her partner and clinician, with all parties committing to take action to complete the agreed plan. Commitment to planning also focused on women stabilizing their financial position and relationships, implying a need to be careful until planning was complete. Descriptions of planning also made reference to the benefit of planning as opposed to
reckless unplanned pregnancy, with a critique made by some women of an unplanned pregnancy as losing the opportunity to review AEDs, commence folic acid or establish a good diet. The evidence of FG23’s commitment to planning was exemplified by her commencement of preconception folic acid and adherence to the plan, both of which were described as providing reassurance that everything was being done, with the goal of improving the outcome of her next pregnancy:
FG23: And it was good, because [neurologist] said we’ll put you on a course of folic acid, keep taking folic acid right the way through … took me off the Epilim, weaned me off so much at a time so everything was sorted… I had to make sure I stuck rigidly to everything that was on this book…
The outcome of her third planned pregnancy was referred to as having the sense of everything having gone according to plan, the visible proof of which was when her baby was born with his spine intact, all fingers and toes counted and with a “good birth” (FG23).
The ability to plan ahead of a ‘planned pregnancy’ was identified by several participants to distinguish additional activities which lay outside of the formality of the clinician defined plan, and involved preparatory deliberations. For some this extended to more in-depth searches for information, and review of epilepsy management – getting the drugs sorted before starting to plan pregnancy. This defined the duration of planning as unique to WWE, in comparison with women without epilepsy. The significance of time was illustrative of commitment to “having planned everything” or the allocation of time such as committing “a year and a half, before I even tried to conceive” (FG86, 30 year old). In the case of FG-I-03, she defined planning in terms of the time required to achieve her desired objectives:
FG-I-03: I think I’d definitely want to plan like every single, cover every single aspect I could of pregnancy, to make sure it all went right … I think I would probably plan 2 years ahead of when I wanted to get pregnant, when I wanted to start getting pregnant. (23 year old)
Women focused upon the intentionality of planning, implying that to plan required preparatory activity; whether to simply withdraw contraception or, more of a challenge, to improve epilepsy management, illustrated by a 29 year old:
OI09: But I wanted a plan as in, in two years that is what I want, either one or two drugs, but something there that I know is working. With the pregnancy side as well [clinician] is thinking about the folic acid…
Within clinic, planning was frequently defined by clinicians in terms of a series of stages, making treatment changes to stabilise seizure control, before embarking into pregnancy:
853. C: […] first
854. basically we get the seizures better, second once the seizures are 855. better, we can plan for the pregnancy/
[…]
859. C: The fifth thing is the folic acid just in case, if in case you fall
860. pregnant, OK (OI06; 20 year old, immediate pregnancy intentions) In the case of OI06, she defined her role in planning pregnancy in terms of “trying to become pregnant” once she had completed the switch of treatment (not shown). This view was supported by others, defining planning pregnancy as involving activities to improve seizure control and adherence to clinical advice as being “well on the way to planning” (OI07). To plan pregnancy for some women involved acting on health promotion activities such as commencing folic acid prior to decisions to start trying to conceive.
OI08: … it’s a process … isn’t it, so far as I’m concerned it would be a case of right okay, there’s engagement, marriage and there’s folic acid … (27 year old, future pregnancy intention)
The above participant exemplified a sub-group of women who defined planned pregnancy in terms of commencement of folic acid.