What do the healthcare experiences of people with long-term conditions tell us about person-centred care? A systematic review.

Abstract

Introduction Growing numbers of people now live with long term conditions. For each person, the challenges are multiple and unique to that individual. In recognition of this, health policy places greater emphasis on the delivery of person-centred care (PCC). However, patients report declining levels of such care. One reason for this may be a mismatch between patient and professional/policy understanding of PCC. Aim To understand PCC from the perspectives of people with long-term conditions. Methods A systematic review of qualitative literature was conducted. Databases searched included ASSIA, BNI, CINAHL, the Cochrane Library, Embase, Medline, PsycINFO, PubMed, Scopus, Web of Science, and grey literature databases. Two reviewers independently screened and selected the studies, assessed their quality, and extracted data. Fifty-four records were analysed through meta-ethnography. Results Four themes emerged: the healthcare system as a battlefield, the healthcare system as a maze, patients’ accounts of personhood, and the centrality of patient enablement. A person-centred healthcare system is described by this review as one that values personhood and enables patients to build knowledge with their clinician in order to manage their illness in a safe, caring, and accessible environment. Conclusion PCC does not depend on the efforts of the clinician alone, but results from a collaboration with the patient and needs to be enabled by the wider organisational and educational systems. Efforts directed at the implementation of PCC might be bound to fail if the healthcare policy agenda does not address the role of the patient’s personhood in clinical practice, and its integration in educational settings.