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

Epilepsy & Behavior

Swansea University Author: Clare, Clement

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DOI (Published version): 10.1016/j.yebeh.2015.01.040

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: research in ‘developing’ countries, and research around surgery for a...

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Published in: Epilepsy & Behavior
Published: 2015
Online Access: http://www.sciencedirect.com/science/article/pii/S1525505015000475
URI: https://cronfa.swan.ac.uk/Record/cronfa20908
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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: research in ‘developing’ countries, and research around surgery for adults with epilepsy. It makes the case that disclosure of people’s behaviours, actions and reactions in different, often complex healthcare 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 wellbeing over the life-course of their illness and how healthcare 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-method 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.
Keywords: Qualitative epilepsy research; Qualitative methods; Ethnography; Mixed methods; Trials; Trustworthiness
College: Swansea University Medical School