The preconception care experiences of women with epilepsy: a qualitative study

Abstract

Background: Women with epilepsy (WWE) need preconception care to help them weigh the risks of loss of seizure control before and during pregnancy against potential harm to the unborn baby and review medication options. This is most important for those taking the highly teratogenic sodium valproate (VPA). Research shows that the minority of WWE access or remember preconception care, and there is lack of evidence regarding the effectiveness of preconception care and the experience of care and decision making.

Aim: to understand the preconception experiences of WWE.

Objectives: 1) To understand the communication that occurs between WWE 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 WWE regarding their medication options; 3) To identify the preconception interventions that WWE encounter for decision making and preparing for pregnancy and to understand the impact that these have on women’s experience.

Methods: A qualitative study with descriptive analysis of audio-recorded Preconception Clinic consultations for WWE (n=7), and Interpretative Phenomenological Analysis (IPA) of interviews with the women at home after their consultations and again up to one year later, and interviews with pregnant WWE recruited at a Joint Obstetric Neurology Antenatal Clinic pregnant at time of interview (n=10, of whom one had previously attended the Preconception Clinic). Purposive sampling included 7 women who had taken VPA before pregnancy, and 10 ‘non-VPA’, and the interviews were analysed in these two groups. Findings were related to attributes of Preconception Care derived from a Concept Analysis.

Findings: Preconception Clinic Consultations were 28- 80 minutes, mainly conducted by an Epilepsy Specialist Nurse with a short intervention from the Consultant Neurologist. The consultation covered medication and treatment options, and broader concerns raised by women and their partners/mothers. Women evaluated the clinic positively and described continuing decision making after the clinic – “I decide”.
The main theme relating to women who had taken VPA was a “trajectory of balance”. Woman moved from “maintaining balance” by using VPA to control seizures, to a “shattering of harmony” at the prospect of changing medication and as a result of the physical and emotional effects of changing medication, to “restoring balance” which could involve “a new self” due to the dramatic changes. They found it difficult to see “who is looking after me?” in the care system, and turned to family and friends for support in the absence of care.
For ‘Non-VPA’ women the main theme was ‘the onus is on me’, with repeated experience of “care is not consistent” and being “sent off track” by inappropriate advice. In both groups, perception of risk to the future baby was influenced by personal experience (of previous pregnancy or friends), perception of disability, and perception of motherhood.

Conclusions: A clear care pathway is needed starting from diagnosis of epilepsy, and offering support for stress. Understanding what influences maternalisation may be helpful in understanding uptake of preconception care.

Date of Award	2016
Original language	English
Supervisor	Helen Dolk (Supervisor) & Marlene Sinclair (Supervisor)