PP12. NAVIGATING “HEALTHCARE LANDSCAPES:” THE MULTIPLE JOURNEYS OF PEOPLE WITH PRIMARY BRAIN TUMOURS

Abstract

AbstractINTRODUCTION: Patients diagnosed with primary brain tumours are thrown into a new and unfamiliar world. Here, they are involved in making complex decisions about care and treatment. Such decision-making is often made difficult by fluctuating cognition and communication difficulties. While clinical expertise and standardised patient pathways set out the journey ahead, these themselves are underpinned by logics that might be unfamiliar or contrary to patients’ expectations and values. As a consequence, patients’ approaches to decision-making as well as their resultant journeys greatly differ, even among patients with the same diagnosis. We take a social science perspective to examine how patients navigate illness and healthcare. METHOD: Using a qualitative ethnographic design over 18-months (Nov 2014-April 2016), we followed a group of 16 patients with malignant and non-malignant primary brain tumours through various points of their care journeys. During this, patients were interviewed regularly by HL who also observed and recorded their clinical appointments with oncologists, surgeons, neurologists, nurses and other healthcare professionals in detailed fieldnotes. Interview transcripts and fieldnotes were analysed thematically. RESULTS: Patients’ experiences of care and their approaches to decision-making differed significantly, even among those with the same tumour subtype and grade. To make sense of these differences we introduce the concept of “healthcare landscapes.” Here, we define landscapes as “the imagined landscapes of care and treatment in which patients find themselves and through which they must try to navigate.” We suggest that patients construct these as they interpret clinical information, treatment, risk, uncertainty, evidence, credibility, best practice, and the goals of care. Landscapes differ in terms of scale and the features they include, for example, standard care pathways, clinical trials or ideas about “medical tourism.” Extrapolating themes from patients’ accounts, we suggest a typology of landscapes that can be categorised into “standard” and “beyond standard,” with the latter further subdivided into “private care,” “experimental,” “global,” “alternative” and “compound.” We illustrate these types using case studies of specific patients. DISCUSSION: Our concept of “healthcare landscapes” offers an alternative way to view the patient experience, acknowledging the complexity of care and its contingent and improvised nature. In addition, it allows room for patients’ interpretations and styles of decision-making and shows how, for many, standard care is but one in a range of possibilities. In this way, we suggest that the concept of “healthcare landscapes” disrupts the idea that care trajectories are linear and straightforward. CONCLUSION: Our concept of “healthcare landscapes” helps to explain differences in care and treatment even when diagnoses are the same. It is useful for clinicians by alerting them to the ways in which patients interpret information and by providing a basic template in which to situate their patients’ approaches to decision-making. It is useful to policy-makers by offering a new entry point into discussions about the equity of care, wherein we might distinguish between landscapes that are impoverished of features and slight in scale and those that are rich and abundant.