When Stakes Are High and Stress Soars: Addressing Health Literacy in the Critical Care Environment.

Abstract

Nowhere more recently has limited health literacy been more apparent than with COVID-19.1 The pandemic has challenged individuals and communities to grasp the importance of handwashing, mask wearing, and physical distancing to prevent disease transmission. Undeniably, health literacy ranks among social determinants of health2,3—housing, environment, education, economic stability, social support, and access to health care. Within the intensive care unit (ICU), more than 5 million Americans receive monitoring and treatment each year4 for serious conditions or injuries. These high-acuity or critically ill patients regularly rely on family members to understand their condition, treatment, and prognosis so that the family members can step into surrogate decision-making roles as needed.Health literacy has been defined as “the degree to which individuals have capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”5 This complex process involves (1) oral literacy (listening and speaking), (2) print literacy (reading and writing), (3) numeracy literacy (interpreting quantitative content), (4) analytic and decision-making skills, and (5) navigating the health care system.6-8Roughly 52 to 74 million US adults have limited health literacy and numeracy, respectively.9 Among adult caregivers, up to 53% may have low health literacy.10 Many factors affect health literacy. Culture and ethnicity top the list as influencers of how people communicate, understand, and respond to health information.8,11 Lower education and socioeconomic status, older age, English as a second language, and learning disabilities are other associated factors.8,12-14 Health literacy may also be situational.15 Unfamiliar environments like the ICU with heightened stress/anxiety can impact one’s ability to (1) grasp, retain, and accurately relay key information; (2) actively participate in care; (3) understand life-sustaining treatments in discussions of goals of care; and (4) make informed decisions about treatment and/or end-of-life care.13,15-18Few studies have assessed health literacy in critical care. Researchers in 2 studies estimated that between 32% and 44% of parents of infants in a neonatal ICU had low health literacy.12,19 Notably, health care professional (HCPs) may overrate health literacy,12 leading to misunderstandings of critical information and further communication difficulties. Limited health literacy increases odds of greater difficulty navigating health care services and communicating with HCPs by 2.5 times.7 It is also associated with increased hospitalizations and health care costs, as well as worse medication adherence and health outcomes.6,14,20 These issues led to the following PICO (patient/population/problem, intervention, comparison, and outcome) question for this synthesis: What practices are effective (I) in improving family members’ (P) understanding of essential health information (O) during critical illness?The strategy included searching CINAHL and PubMed. Keywords included family members, caregivers, intensive care unit, critical care, health literacy, family communication, and education. The search was limited to the past 10 years.Few studies21-24 have evaluated the impact of health literacy interventions on knowledge acquisition of families in the ICU. Two studies explored usability of health literacy– friendly materials. In the first pilot study, low-literacy parents of infants in a neonatal ICU (N = 10) rated web-based education, incorporating visual aids (ie, photos, pictographs, voice-recorded text messages at a 5th-grade level) as understandable and easy to use.21 In a quality improvement study, 95% of family members (N = 56) reported that a brochure helped them understand their loved one’s risk of ICU-associated delirium.22Researchers in other larger prospective studies evaluated whether ICU informational brochures23,24 and websites24 improved family understanding. Topics ranged from the health care team to daily meetings and common procedures/treatments. One study intentionally included emotional justification when explaining information to reduce worry and improve family resilience.24 In both studies,23,24 families receiving brochures had greater comprehension of their loved one’s diagnosis, treatment, and prognosis (although poor prognoses were understood better than good ones were).24The collection of small studies in this synthesis indicate that health literacy–friendly brochures23,24 and web-based materials21,22 were easy to use and improved family members’ understanding of conditions, treatments, and prognoses. However, with such limited evidence, health literacy continues to be an emerging topic and research field in critical care.In the broader arena, health-literate organizations recognize that all patients/families have health literacy needs25 (Figure 1). Therefore, universal health literacy precautions should be adopted to ensure comprehension of key information in every health care encounter.2,6 These needs are underscored by a recent qualitative ICU study where researchers found that HCPs co-created “relational health literacy” with families, exchanging health information in their unfolding relationships.3 This relational concept of health literacy extends traditional definitions5 beyond individual cognitive or functional capacities. As families accessed and processed information about their loved one’s disease/condition/treatment and health care system, they grasped to understand a new language of illness, including technical language. Support from HCPs—especially nurses’ relational presence—aided family members in understanding and participating in care. These findings reinforce that preparing the workforce is imperative (Figure 1). Nurses and HCPs must effectively use patient-centered communication skills to assist patients and their families in building functional and interactive health literacy to face the often-stressful ICU experience.26 Several studies have shown that training in clear communication skills improved knowledge/skills and HCPs’ awareness of the health literacy problem.11,26-29 Best practices for clear communication that aid comprehension are outlined in Tables 1 and 2 and Figure 2. These practices should be integrated into health literacy education, along with cultural competence training owing to the strong influence that culture has on communication. The Agency for Healthcare Research and Quality (AHRQ) Health Literacy Universal Precautions Toolkit11 includes a quiz and communication self-audit that may be useful in reinforcing health literacy principles.Health literacy is now also understood as a systems issue.8,34 Thus, clinicians need access to easy-to-understand written materials and resources to augment verbal face-to-face interactions with patients and families (Table 2). Decision aids are emerging tools designed to improve knowledge of issues such as advanced care planning and life-sustaining treatments (eg, mechanical ventilation, cardiopulmonary resuscitation) and thus decisional comfort of patients and families.11,18,30,35 As the science evolves in critical care, how can your unit enhance its health literacy environment?As strategies such as these mitigate system demands and complexities, critical care nurses can continue actively partnering with patients and their families to build the literacy they deserve to understand and make informed decisions about their health condition and thereby transform the patient/family experience. Nurses. Relational. Presence.