title: Women with epilepsy preparing for pregnancy: A qualitative analysis
Creators: name: Winterbottom, JB
Publisher: name: University of Liverpool Repository
Year: 2017

description: Abstract Women with epilepsy (WWE) are frequently presented with information when preparing for pregnancy, much of this includes statements of risk either concerning the health of the woman or her future child. Little is known about how women consider, use, are influenced by, trust and either act on or disregard information provided prior to conception, how they make decisions about conception, and what might influence their pregnancy planning. Studies have told us the numbers of women not receiving advice prior to getting pregnant, but these studies do not help us understand why this occurs and little is known of the potential to influence the involvement of women in preconception counselling. The rationale for this project was to develop understanding of the views of WWE, their beliefs, attitudes and perceptions of future pregnancy. Qualitative methods were applied to investigate the processes of WWE preparing for pregnancy. Purposive recruitment was undertaken for women aged 16 years to 45 years with a confirmed diagnosis of epilepsy of at least three months who have experience of being prescribed antiepileptic drugs for management of epilepsy. Women were recruited from regional epilepsy clinics across the NW of England, and invited to take part in either a focus group or clinic observation and follow-up interview. All interviews and focus groups were recorded and transcribed verbatim. All transcript data was managed using NVIVO 7 computer-assisted qualitative analysis software and analysis was informed by interpretative phenomenological analysis. A total of 85 women participated within this study, and 12 clinicians provided consent for clinic observation. The results highlight the value of examining the subjective experiences of reproductive aged WWE, and contribute important insights into the part played by women within the decision-making process, and in the broader context of their personal experience, relationships, family and social life. The most significant finding from analysis was the inconsistent use of the term ‘planning’ both by women and their clinicians. Women frequently defined planning as the intention to conceive, implying activities to improve epilepsy management occurred before the planning stage. For those women who defined planning as involving more complex activities and commitment to improve preconception health, many also longed for a more natural approach to pregnancy of simply trying to conceive. Barriers to planning included misunderstandings about what interventions were required and the timing of implementation, in addition to the influence of significant others and past pregnancy experience including experience of miscarriage, pregnancy termination or abortion, and the likelihood of engaging in preconception interventions. The presentation of risk information to women during their childbearing years presents a challenge requiring a careful balance between delivery of risk information and promotion of self-efficacy to successfully achieve planned pregnancy. It is contended that current practice fails to acknowledge women’s active role in preconception decision-making. Risk information emphasises risks of harm to the unborn child heightening fear and worry and for some women perceptions of blame and selfishness when considering their needs above a future child. Future research is required to acknowledge the interconnectedness of factors likely to contribute or inhibit pregnancy planning, and the perceptions of risk, all of which were likely to act both independently and interdependently within the social context of the lives of WWE during their childbearing years.