The document explores the preconception care experiences of women with epilepsy, focusing on their interactions with healthcare providers and medication decision-making processes. It highlights the challenges these women face in balancing their health needs, maintaining seizure control, and preparing for motherhood while considering the effects of antiepileptic drugs, particularly sodium valproate. The qualitative study emphasizes the need for improved support and clearer pathways to preconception care for women with epilepsy.

1. ulster.ac.uk
A qualitative exploration of the
preconception care experiences
of women with epilepsy and
their medications
Lorna Lawther
(PhD Student: DEL funded)
Supervisors:
Professor Helen Dolk
Professor Marlene Sinclair
Dr Jim Morrow

2. Why do WWE need preconception care?
Optimisation of maternal health
-seizure control before pregnancy
and during pregnancy (Lamotrigine)
Optimisation of fetal health
-reduction/ modification of
teratogenic medication (Sodium
Valproate/ epilim®)
-awareness of drug options in light of
research
Addressing other concerns that
WWE have:
- fertility/ contraception; antenatal;
intrapartum and postnatal concerns
General preconception care:
-diet; exercise; smoking; folic acid

3. WWE have difficulty in planning pregnancy (Davis and Pack,
2008)
PCC is accessed by motivated women (Pashley and
O’Donoghue, 2009)
Response to PCC affected by previous experience
(Thompson et al, 2008)
Uptake of PCC dependant on relationship with HCP (Widnes,
2012)
Cochrane review: Lack of evidence of effectiveness for PC
counselling in WWE (Winterbottom et al, 2009,2014)
However….

4. “There is a need for more enquiries into women’s own
experiences of navigating the path to becoming
pregnant whilst they manage their epilepsy.”
Wessecker et al (2013)
Anti-Epileptic Drug management in Pregnancy Study
(EMPiRE)

5. Aim
To understand the preconception care experiences of women with
epilepsy.
Objectives
1. To understand the communication that occurs between
women with epilepsy and health care practitioners and the
extent to which this enables them to plan and manage their
pregnancy.
2. To understand the preconception decision making of women
with epilepsy regarding their medication options.
3. To identify the preconception interventions that women with
epilepsy encounter for decision making and preparing for
pregnancy and to understand the impact that these have on
women’s experience.

6. Study design
A qualitative study using Interpretative Phenomenological
Analysis
Sampling: purposive to recruit WWE in two groups: VPA & non-
VPA
Recruitment from 2 clinics: a specialised preconception clinic
(PCC) and a Joint Obstetric Neurology Antenatal Clinic
(JONANC)*
Data collection : in- depth interviews: Women from the PCC
interviewed twice over 6 months; JONANC once before 24/40
Analysis: in 2 subgroups -VPA & non VPA- using IPA

7. Results: overview of VPA subgroup
VPA subgroup n=7
Recruitment 3 from PCC; 4 from JONANC (1 attended PCC)
Age at diagnosis one under 5yrs; four 11-14yrs ; one 17yrs
one 21yrs
Epilepsy 3 inactive epilepsy; 4 active epilepsy
Medication profile 2 successful change from VPA preconception
3 on VPA as allergic to LTG
2 only VPA
Parity 2 parous; 3 primigravida and 2 nulligravida
Relationship history 4 married/engaged; 2 long term relationship; 1 short
term relationship
Employment history 4 not employed/voluntary work; 3 employed
Driving 4 never had a driving licence, 3 drive

8. Balancing myself
Balancing as a woman with epilepsy
Balancing as I move towards motherhood
I have to reach for support to steady me
Shattering my harmony
Pulling away my stabiliser
Realising my child’s needs
Living through a state of uncertainty
Restoring balance
Coming to terms with where I am now
Comfortable with change
A new self
Results: A Trajectory of balance

9. Balancing myself
Balancing as a woman with epilepsy
I didn’t mind being on drugs...as
long as it was controlled…to
control my epilepsy at the time
(IV1: 103-104)
I am happy in myself that I
am on that drug because it
is controlling me and
because of the fact that I
was so well the last time
(Daphne: 379-382)
Diana who has been on VPA since aged 17
no children and attended the PCC
Daphne on VPA since 13 yrs
2nd pregnancy on VPA attending
the JONANC
My medication keeps me under control

10. Balancing myself
Balancing as I move towards
motherhood
the more I thought about it I know that the epilim chrono
was the best medication for me all my life, but me
thinking about having a child and …knowing somebody
had disabled children that I don’t want to be selfish
having it, …knowing now if I’ve a child in the future,
knowing that maybe my child could be disabled or not
because I know. If I hadn’t have known maybe I wouldn’t
have felt selfish, but now I know that the baby was …. her
two children were disabled so I don’t want to be selfish
so that’s why I turned round and asked is there any more
medications, so to change over. (IV1:184-192)
Bethan taking VPA since 13 yrs attending the PCC
I balance my health with my baby’s health

11. Balancing myself:
I have to reach for support to steady
me
Diana (PCC)
Who is looking after me?
I spoke to my GP and he wasn’t very helpful (laughs) a
couple of times that I spoke to him because this has
been going on for the last 2 years…how do you go about
it because I have the implant in my arm and …I wanted
to have my cycle and everything normal…I was in the
doctors seeing him about other things and I just
happened to mention it a couple of times…and he said
‘get in touch with your consultant’ and my sister said I
don’t think you can do that …I rang and the secretary
she was really helpful and she gave me the contact
details for the Epilepsy Specialist Nurse

12. Shattering my harmony: pulling
away my stabiliser
I thought that maybe they were going to
down the zonegran …it was ESN’s idea and Dr
B ….to get me off this epilim ….and I had been
on it for such a long time from when I was 14
so that was a scary scary like epilim's my life it
was my life it was my drug and to say that…
that scared the life out of me and I thought
'oh my goodness' you know ‘No! I can’t do
this!’ but em …you know if you really I really
wanted another baby but I also you know
really wanted to be seizure free and the 2
things were going together and it was hard!
But she says 'we'll do it really slowly W we’ll do
it really slowly…but if you really want another
child you know you have to get off the epilim’
(162-168)
Anna (PCC)
1st pregnancy
on VPA
changed from VPA in
preparation for another
pregnancy

13. Shattering my harmony: pulling
away my stabiliser
I felt possessed at that point.. I had been seeing
things …one night I was out with my friends and
the day after I came out of the house and my
step-father… he was driving up in the car and I
came up crying to him “I’m depressed …I’m
depressed” …he knew there was something
wrong …the consultant (neurologist) was glad
we phoned him straight away when I was in the
mental health unit… they were changing my
tablets back to epilim
Bethan: Experience of psychosis
when changing medication from VPA

14. ...the last time I was at the hospital I got speaking to Dr A and you know he
obviously asked …he realised that I kept well with the pregnancy with [son] and
there was no issues with my son …and he …sort of said that he was just happy
to leave things the way they were and he said if you have a child …if you have
epilepsy and the first child that you have is normal and has no abnormalities
or had nothing wrong with it and your pregnancy went well, second time
round you have a higher chance again of everything going the same way so
that was really the way that he has left it like that …(307-314)
if something had gone wrong the first time he
said there is another chance that something
can go wrong again but.. so thankfully nothing
did go wrong and hopefully nothing will go
wrong this time but I suppose they are always
looking out for things (321-323)
Shattering my harmony:
realising my child’s needs
Daphne (JONANC)
Previous pregnancy
experience used to balance
the risks and benefits of VPA

15. he's [son] 16 months now and he's still not walking and he is quite slow …
he is getting there he is making progress he doesn’t really …have much of
an idea of balance and we my mum -it’s actually my mum that’s a bit
worried about him- he doesn’t clap his hands… He doesn’t point just wee
you know wee things like that I can’t remember what they’re called…minor
something or other..(340- 345)
I spoke to my Dr my own GP about it and … he has
actually referred him to the paediatricians because
he says maybe he just needs a wee bit of
encouragement to get him going but as yet I haven’t
heard anything back from them but when I spoke to
Dr A the last time when I was down there he said
we just sort of asked him … could it be linked with
my epilepsy and the drugs that I was on but again
well they don't really know but he was interested
he was very interested to know it all and took a
whole load of notes on it and …that’s really ...the
only thing I have noticed…(347-354)
Realising my child’s needs
Previous child not old
enough
to take
neurodevelopmental
delay into
account for this
pregnancy

16. Shattering my harmony:
Living through a state of uncertainty
you just don’t know the future or over the
next couple of months … if you come off the
tablets how it’s going to affect or if you don’t
come off them … and I suppose even the
thought of getting pregnant … is that going to
happen straight away or isn’t it ….things like
that that (IV1: 412-415)
Diana
it’s only now after that 20 week scan that I’m actually
starting to allow myself to kind of try and relax into things a
bit and try and be cautiously optimistic and hope that things
work out (338-340)
it was only now I suppose trying to be cautiously optimistic
because before I was scared to be hopeful of anything
because I just didn’t think it was going to work out (356-357)
Fiona (JONANC)
Changed from
VPA before pregnancy
2 previous miscarriages when
Taking VPA

17. Restoring balance
Coming to terms with where I am now
I just sort of wondered was it
linked… I have been on my drugs
since that time but you are on them
the whole time full 9 months of
pregnancy and …if it doesn’t have
any effect whatsoever on the child
… it’s very amazing(364-367): If I
was on a different drug and I was
having fits all the time and didn’t
really know what effect it would
have on the baby it would probably
be harder(374-5)
Daphne (JONANC)
I’m not disappointed …. whenever I was about
to finish my zonegran I was disappointed
because I wanted to start a family but then I
realised then whenever they all explained to
me “you know W think about it …if you want to
put yourself in that position …what if
something happens to you and then your poor
boyfriend is gonna be left on his own with the
wee one and then maybe touch wood” and
then I realised yes …my health comes first
health comes first and then maybe have a wee
baby and I was “alright and (boyfriend) says I
don’t care I don’t care about a baby and he was
me and you we can wait until you are 100% and
then we can see again then” (IV2: 155-162)
Bethan (PCC)

18. Restoring Balance:
Comfortable with change
The confidence its growing and
growing (103)
I’m happy..very happy the way it
is. No I’m extremely happy (397)
Anna (PCC) who had a
successful change
from VPA
I don’t mind the
changing process
because I knew
because I know that
the Dr and ESN want
what’s best for me too
(IV1: 336-337)
Bethan (PCC)
who tried to change from VPA
without success

19. Restoring Balance:
A new self
that was never me before …(IV2: 277) 'God
almighty that’s not me' it just wasn’t me (IV2:
289-290) definitely I have noticed a big
change but hopefully it will go back to normal
(IV2: 304-305)
Diana (PCC)
changing from VPA
he thinks I'm much better actually on this new drug because I was very
tired on epilim but I suppose I didn’t even nearly realise that at the time
like if Dr B had of said how are you …I would have sometimes had sort of
fuzzy heads or needed to go to bed or felt awful tired couldn't get up in the
morning but it was just that was just the reality of ..and I was so used to it
coz I was on them for so long that that was just me…whereas now god I'm
up at the crack of dawn and (husband) notices that he thinks that I have
more energy he thinks that it’s better for me (146-154)
Fiona (JONANC)after a successful change from VPA

20. Experience of preconception care
Women with epilepsy are in a state of balance with
medication an aspect of maintaining balance
As WWE move towards motherhood, they reach out for
support to help them to maintain their balance
The decision to change medication can result in significant
physical and emotional imbalance requiring ongoing follow-
up and support
Preconception care is fragile and inconsistent

21. • not in a system of care
• being a well woman on VPA
(seizure free)
• not knowing how to access
preconception care
• lack of signposting by GPs
to preconception care
• perception of infertility
because of epilepsy
• no preconception care in
previous pregnancy
Preconception care
• personal relevance of
harm related to VPA
• remembering
information from time of
diagnosis associated if
found relevant at the
time
• previous contact with
preconception care
providers/previous
pregnancy
Barriers Facilitators

22. Thank You
Lawther-L@email.ulster.ac.uk