Now What? Collective Sensemaking and Sensegiving in the Cystic Fibrosis Community in Sweden During the Initial Phase of the COVID-19 Pandemic

Abstract

ABSTRACT The COVID-19 pandemic’s effects on people’s lives and society induced a need for rapid individual and collective sensemaking, including communication forums enabling stakeholders in the health ecosystem to share information, solve problems, and learn. This study specifically focused on the needs of the patients and family caregivers living with cystic fibrosis (CF) or primary ciliary dyskinesia (PCD), conditions that lead to chronic infections and inflammation in the airways. We explored how CF and PCD patients, family caregivers, and clinicians collectively received, processed, and used information about COVID-19 to facilitate self-care and health care decisions at the beginning of the pandemic. We applied macrocognitive theory to analyze qualitatively the questions and answers exchanged in a series of six webinars facilitated by a CF learning network at the beginning of the pandemic (March – April 2020). We identified three macrocognitive functions: sensemaking, decision-making, and replanning. We further generated nine themes: (a) understanding the nature of COVID-19, (b) exploring self-care needs and possibilities, (c) understanding health care possibilities, (d) making decisions about prevention and testing, (e) managing COVID-19 within families, (f) adjusting planned care, (g) replanning chronic care management, (h) defining COVID-19 health care strategies, and (i) refining health care policies. The exchange of questions and answers played a central role in facilitating important cognitive processes, which enabled a rapid anticipation of needs and adaptation of services to support patients, family caregivers, and clinicians during the COVID-19 pandemic.