Bringing narratives from physicians, patients and caregivers together: a scoping review of published research

Abstract

Patients and family caregivers tell different stories about their illness and care experiences than their physicians do. Better understanding of the relationships among these narratives could offer insight into intersections and disconnections in patient, caregiver and physician perceptions of illness and care. Such understanding could support enhanced patient-centred care in medical education and practice. Narrative writing is increasingly common among physicians, patients and caregivers and uniquely positioned to reveal matters of concern to these groups. We conducted a scoping review to identify literature in which first-person narratives from more than one group (physicians, patients and/or caregivers) were considered as ‘data’. A search strategy involving nine databases located 6337 citations. Two reviewers independently screened titles and abstracts. Full-text screening followed (n=82), along with handsearching of grey literature and bibliographies. Of these, 22 met inclusion criteria. Most pieces analysed narratives by patients and caregivers (n=13), followed by patients, caregivers and physicians (n=7) and patients and physicians (n=2). Only nine pieces compared perspectives among any of these groups. The rest combined narratives for analysis, largely patient and caregiver stories (n=12). Most of the 22 papers used descriptive content analysis to derive themes. Themes of humanity, identity, agency and communication intersect between groups but often manifest in unique ways. What is absent, however, is a more interpretive narrative analysis of structure, orientation and characterisation within these narratives, which may reveal even more than their content. This scoping review offers a cautionary tale of lost potential. Many narratives are gathered and analysed but usually only thematically and rarely comparatively. We call for researchers to explore the potential of comparative analysis and the power of narrative inquiry in the field. Comparative narrative analysis may enrich understanding of how differences between perspectives come to be and what they mean for the experience of illness and care.

Voices from the Front Lines: An Analysis of Physicians’ Reflective Narratives about Flaws with the ‘System’

“…We therefore considered both the content (what the words themselves communicated) and the form (including storytelling categories such as orientation and agency). Such an interpretive narrative analysis has the potential to tell us more about the research question than the content alone (Charon 2012;Moniz et al 2019;Riessman 2008, 77).…”

Patients as experts in the illness experience: Implications for the ethics of patient involvement in health professions education

“…In contrast with generalizable knowledge, generated by the collection of large amounts of data to approximate an objective truth, transferable knowledge comes from an in‐depth analysis of one or more individual personal experiences and gives rise to the breadth of understanding of human experience, transcending the particular by connecting to ideas existing in a population of people 29 . For example, in hearing the experiences of patients, trainees may learn common feelings of people facing illness and interacting with the health care system, including fear, anxiety, helplessness, anonymity, dehumanization and marginalization, 30 feelings with which J.V. can identify.…”

‘In the picture’: perspectives on living and working with cancer

“…We sought connections alongside evident contrasts between them to ask how people 'do' participation, to what ends and over what time spans. Recognising the radical differences between what is understood to constitute data and data ethics (Shildrick et al 2018), we nevertheless asked how dialogues between researchers, staff and/or patients were registered as data and influenced by the invitation to participate (Moniz et al 2021;Tarr, Gonzalez-Polledo, and Cornish 2017).…”