title: Qualitative research and its methods in epilepsy: Contributing to an understanding of patients' lived experiences of the disease.
abstract: 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.
authors.affiliation: College of Medicine, Swansea University, Institute of Life Science 2, Second Floor, Singleton Park, Swansea SA2 8PP, Wales, UK. Electronic address: F.L.Rapport@Swansea.ac.uk.
authors.forename: Frances
authors.initials: F
authors.lastname: Rapport
authors.affiliation: College of Medicine, Swansea University, Institute of Life Science 2, Second Floor, Singleton Park, Swansea SA2 8PP, Wales, UK. Electronic address: c.clement@swansea.ac.uk.
authors.forename: Clare
authors.initials: C
authors.lastname: Clement
authors.affiliation: Department of Geography, Swansea University, College of Science, Room 220, Margam Building, Singleton Park, Swansea SA2 8PP, UK. Electronic address: m.a.doel@swansea.ac.uk.
authors.forename: Marcus A
authors.initials: MA
authors.lastname: Doel
authors.affiliation: College of Medicine, Swansea University, Institute of Life Science 2, Second Floor, Singleton Park, Swansea SA2 8PP, Wales, UK. Electronic address: h.a.hutchings@swansea.ac.uk.
authors.forename: Hayley A
authors.initials: HA
authors.lastname: Hutchings
mesh_terms: D032882:Comprehension; D004827:Epilepsy / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D006801:Humans; D017060:Patient Satisfaction; D036301:Qualitative Research; D012107:Research Design / Q000592:standards*
keywords: Ethnography; Mixed methods; Qualitative epilepsy research; Qualitative methods; Trials; Trustworthiness