Needs of pregnant women with epilepsy-a mixed methods study

Epilepsy is the most common chronic neurological condition complicating pregnancy. This study aims to understand and explore the needs of pregnant women with epilepsy in India using a concurrent mixed methods approach (Quan-Qual).

Study was conducted in a comprehensive epilepsy care center of a tertiary care hospital in South of India. After obtaining ethics approval consecutive women with active epilepsy who were currently pregnant were approached and followed till 6 weeks post-partum. Apart from demographic and clinical details, quality of life, self-efficacy, perceived stress, anxiety and social support were estimated. Focus group discussions of 4-6 members facilitated by a trained member of the research team for various stake holders (currently pregnant women, care givers, health care providers, and recently delivered women with good outcomes, and with bad outcomes) were conducted till data saturation. These were recorded, transcribed and coded using both inductive and deductive methods. Quantitative data was processed using STATA ver14.2, Stata Corp, USA and qualitative data using NVIVO, USA. Integration was carried out by merging and triangulating the results.

We recruited 40 pregnant women with epilepsy and the qualitative strand included 28 different stakeholders. Three major themes supported by quantitative and qualitative data emerged a. Epilepsy associated needs (antiseizure medication associated and fragmentation of care) b. Pregnancy associated needs (planned pregnancy) c. Pregnancy and epilepsy associated (anxiety and self-care). Many of these needs were unmet.

Pregnant women with epilepsy in have many unmet needs.