Qualitative research and its methods in epilepsy: Contributing to an understanding of patients' lived experiences of the disease

- Identifies the contribution of qualitative data to epilepsy research
- Offers a range of methods and techniques for greater qualitative detail
- Gaps in the literature include research in developing countries
- Research into people's lived experience of epilepsy surgery at different time points
- Ethnographic methodology is presented in relation to epilepsy research
- The paper discusses trustworthiness of qualitative data in epilepsy research

This review paper makes the case for the usefulness of qualitative research methods in the context of epilepsy research. It begins with an assessment of the current state of epilepsy literature and identifies gaps especially in the following: research in 'developing' countries and research around surgery for adults with epilepsy. It makes the case that disclosure of people's behaviors, actions, and reactions in different, often complex health-care situations can indicate how they bring meaning to their disease experiences and support needs. It shows the value of encouraging work that clarifies how patients manage their illness and how they understand changes in their health and well-being over the life course of their illness and how health-care professionals and other stakeholder groups care for those with epilepsy.The paper suggests a range of methods for addressing gaps in the literature and highlights a range of data collection, data analysis, and data interpretation and synthesis techniques that are appropriate in this context. It pays particular attention to the strengths of qualitative applications in mixed-methods research using an example from a recent ulcerative colitis drug trial that indicates how they can be integrated into study findings, add rich description, and enhance study outcomes. Ethnographic methodology is also presented, as a way of offering rare access to the 'lived experience' dimension, before the paper concludes with an assessment of the qualitative criteria of credibility, dependability, transferability, and confirmability for judging a study's 'trustworthiness'. The criteria evidence not only the trustworthiness of data and findings but also the ways in which a study has approached any challenges inherent in its research design.