lorna lawther
TRANSCRIPT
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
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
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….
“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)
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.
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
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
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
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
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
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
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
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
...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
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
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
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)
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
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
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
• 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
