‘Gaining an Understanding of the Experience of Pregnancy in Women with Epilepsy'
Sincerest thanks to all of you who participated in this research. It was a privilege to hear your experiences and from my analysis of your accounts I have generated four themes:
Concerns about Motherhood
* You expressed having concerns during your pregnancies about how their epilepsy and/ or its treatment would affect your ability to be a mother. These concerns related to fears of harming the baby through seizures and/or medication.
* Despite these concerns, many of you also expressed your joy at becoming a mother and did not feel different for having epilepsy.
* Many of you had been advised about what you should avoid doing after the baby was born, (e.g. not bathing the baby alone). Some of you struggled with this, and related the ability to do certain tasks with what it is to be a mother.
* Some of you discussed your concerns they had about how your epilepsy would impact on labour and birth- some felt that a seizure would stop you from consciously experiencing your own birth or being able to give birth naturally.
Experience of Services
* For some of you, the experience of being pregnant and having epilepsy meant that some professionals who were not involved in the care of your epilepsy either overly focussed upon epilepsy or did not want to engage in any conversations about epilepsy.
* You also described positive experiences of services when they took into account your needs and wishes. Negative experiences tended to be when fewer choices were available and when decisions about care were made without your input.
Living with Risk
* For many of you taking medication during pregnancy, the risks associated with medication were thought about by weighing them up against the risks posed by uncontrolled seizures.
* For some of you the experience of being pregnant had created changes in how you thought about your epilepsy. Many of you described being ‘more wary of it now’ but also described ‘carrying on’ with life as usual.
* It was felt that there was a lack of understanding amongst healthcare professionals about epilepsy and the issues raised with pregnancy. Many of you described having to take the lead on their own care needing to chase things up yourselves. Many of you also felt that you did not feel particularly informed about pregnancy and epilepsy and that information was hard to come by.
* Like many pregnant women, pregnant women with epilepsy can face a number of challenges during their pregnancy. However, these challenges were exacerbated in this group of women and many of these women also faced a number of additional challenges during their pregnancy.
* Women described their anxieties about being harming the baby, either through a seizure or through use of antiepileptic drugs.
* Women often found themselves to be the messenger between different professionals and many women felt that most health professionals had a very limited understanding of epilepsy.
* Information about what to expect during pregnancy was not always widely available.
* Risk of harming the baby is a significant concern for many women with epilepsy during pregnancy and therefore health professionals should help women to understand these risks in a supportive manner.
* Health professionals should recognise the emotional impact of managing a pregnancy alongside epilepsy and women should be given the opportunity to talk about their feelings throughout their pregnancies.
* Health care professionals should have more training about epilepsy and so that they are able to have a greater understanding of the needs of the women that they see and provide more useful and accurate information.
* Any advice offered to women with epilepsy during pregnancy should be individually tailored.
* Women need more information about the challenges of pregnancy and epilepsy. Epilepsy nurses well place for providing some of this information to be shared with women.
Sharing the Findings
I am presenting these findings at a conference which will be attended by Midwives, Health visitors and other health care professionals. I am also intending to publish the findings as a research paper and will be sharing the findings with the Epilepsy Nurses in York and with Midwifery Services in Humber. I also intend to provide a summary of the findings to Epilepsy Action.
Once again, thank you very much for participating in this research. Your time and contributions were valued immensely.