Identifying gaps in knowledge: A map of the qualitative literature concerning life with a neurological condition

Abstract

Objectives To describe patterns in the qualitative literature regarding the everyday experience of living with a neurological condition; to identify areas of depth as well as gaps in the existing knowledge base. Methods An extensive search of the literature yielded 474 articles meeting the inclusion criteria. Data extraction, based on scrutiny of both abstract and full text article included country of origin, diagnosis, stated aim, methodological framework/design, participants, and data collection method(s). Studies were categorized into 27 topics within four broad foci. Results Four broad foci describe the field: impact and management, daily activities and occupations, impact on family, and the healthcare experience. Overall the research is unevenly distributed by diagnosis; some are well represented while others are the subject of little research. Even diagnoses well represented in quantity can be limited in breadth. Discussion Possible explanations for the patterns of emphasis include: a focus on issues and problems, highlighted points of contact between patients and healthcare providers, and ability of participants to voice their views. The literature is also characterized by limited across diagnoses research or that comparing the experience of people with different diagnoses. There is a need for more research in particular diagnoses; more varied data collection methods and acknowledgement of ethnicity, gender, discrimination, and social inequalities.