ABSTRACT
BACKGROUND: The rapid spread of COVID-19 required swift action to provide people with rheumatic and musculoskeletal diseases (RMDs) with reliable information. People with limited health literacy constitute a vulnerable group that might have difficulty accessing, understanding and applying health information, particularly in times of crisis. OBJECTIVES: This study explored (a) key aspects of crisis communication and (b) explicit consideration of people's health literacy needs in communication to people with RMDs during the first wave of COVID-19 in the Netherlands. METHODS: We conducted a convergent, qualitatively driven mixed-methods study comprising seven qualitative interviews with professional representatives of organisations responsible for information provision to people with RMDs, and quantitative analysis of 15 patient information materials distributed by these organisations. The study was guided by principles of crisis communication and health literacy. We assessed understandability and actionability of information materials using the Dutch version of the Patient Education Materials Assessment Tool (PEMAT, resulting in a percentage of quality criteria met), and language difficulty level using an online application (assessing difficult words, jargon, passive, complex and long sentences, long paragraphs, and difficulty levels according to the Common European Framework of Reference for Languages (CEFR, from A1 (basic) to C2 (proficient))). RESULTS: Respondents reported lack of preparedness, challenges related to scientific uncertainty and reaching the target group, difficulty simplifying information, and uncertainty regarding adequacy of the communication approach. Patient information materials (written and video) showed variation in actionability (range 60-100%) and understandability (range 58-100%), and 69% of written materials were too difficult, mostly due to the use of long sentences and difficult words. The quantitative findings were in coherence with the limitations in communication reported by respondents. Several potential improvements were formulated in 'lessons learned'. CONCLUSIONS: Although rheumatology organisations mostly adhered to principles of crisis communication and made efforts to adapt information to their audience's needs, we propose recommendations to improve preparedness, strategy, content, reach and consideration of health literacy needs in future crisis communication.
ABSTRACT
BACKGROUND: During the coronavirus disease 2019 (COVID-19) pandemic, people have been confronted with a large amount of information about the virus and the governmental measures against its spreading. However, more than a quarter of individuals have limited health literacy (HL), meaning that they have difficulty finding, understanding, and applying health information. The purpose of this interview study was to investigate how individuals with limited HL acquire information about COVID-19 and governmental measures, what difficulties they experience in understanding and applying it, and what may be needed to overcome these difficulties. We also addressed other problems that they might face as a result of the pandemic. Using our findings, we aimed to make recommendations on the possible role of primary care in informing and supporting patients with limited HL during the pandemic. METHODS: Between June and October 2020, 28 individuals with limited HL were interviewed by phone (age range 20-84). The interviews were semi-structured and focused on the first months of the pandemic in the Netherlands (March/April/May 2020). RESULTS: The participants generally found COVID-19-related information abundant and complicated, and sometimes contradictory. Information provision by their own health care professionals was highly appreciated, especially in the context of chronic illnesses. General health care problems resulting from COVID-19 measures were postponement of regular care and difficulty with digital contacts. CONCLUSIONS: Individuals with limited HL may benefit from provision of COVID-19-related information and support by their own health care providers. This applies in particular to patients with chronic illnesses. Primary care professionals are in the ideal position to take this role.