Consumers’ perspectives on their involvement in recognizing and responding to patient deterioration—Developing a model for consumer reporting

Abstract

Background: Adverse events occur in health care. Detection and reporting of deterioration therefore have a critical role to play. Patient and family member (consumer) involvement in patient safety has gained powerful support amongst global policymakers. Few studies, with none taking a rigorous qualitative approach, have drawn upon consumers’ experiences to establish their preferences in consumer reporting of patient deterioration programmes. Objective: To explore consumers’ experiences of previous reporting of patient deterioration; their preferred educational strategies on this role and recommended pathways in a consumer reporting of patient deterioration model. Design, setting and participants: An interpretive, qualitative research design was utilized. Nine focus group interviews were undertaken across Adelaide, capital city of South Australia. Interviews were audio-taped, transcribed and analysed thematically. Twenty-six adults described, then reflected, on previous experiences of reporting patient deterioration. Results: Overarching themes incorporated consumers’ experiences and patient/family education. Three themes emerged in relation to consumers’ experiences: feelings, thoughts and actions. Five themes arose on educating consumers: content, timing, format, information providers and information recipients. The consumers’ deep reflections on their past reporting experiences led to the development of a new model for consumer reporting of patient deterioration. Conclusions: Consumers’ views on ways to improve consumer reporting of patient deterioration processes emerged. These improvements include structured educational programmes for staff advocating open health-care professional/consumer communication, educational materials developed and tested with English-speaking and culturally and linguistically diverse consumers and a model with three consumer reporting pathways.