Elsevier

Social Science & Medicine

Volume 58, Issue 7, April 2004, Pages 1309-1321
Social Science & Medicine

Health literacy, social support, and health: a research agenda

https://doi.org/10.1016/S0277-9536(03)00329-0Get rights and content

Abstract

Amid increased concerns about the adverse consequences of low health literacy, it remains unclear how health literacy affects health status and health service utilization. Moreover, studies have shown significant variation in individual adaptation to health literacy problems. This article proposes research hypotheses to address two questions: (1) What are the causal pathways or intermediate steps that link low health literacy to poor health status and high utilization of expensive services such as hospitalization and emergency care? (2) What impact does social support have on the relationships between health literacy and health service utilization? Empirical studies of health literacy are reviewed to indicate the limitations of current literature and to highlight the importance of the proposed research agenda. In particular, we note the individualistic premise of current literature in which individuals are treated as isolated and passive actors. Thus, low health literacy is considered simply as an individual trait independent of support and resources in an individual's social environment. To remedy this, research needs to take into account social support that people can draw on when problems arise due to their health literacy limitations. Examination of the proposed agenda will make two main contributions. First, we will gain a better understanding of the causal effects of health literacy and identify missing links in the delivery of care for patients with low health literacy. Second, if social support buffers the adverse effects of low health literacy, more effective interventions can be designed to address differences in individuals’ social support system in addition to individual differences in reading and comprehension. More targeted and more cost-efficient efforts could also be taken to identify and reach those who not only have low health literacy but also lack the resources and support to bridge the unmet literacy demands of their health conditions.

Introduction

Over the past decade, increased interest in health literacy—defined as the capacity of individuals to obtain, process, and understand the basic health information and services needed to make appropriate health decisions (Selden, Zorn, Ratzan, & Parker, 2000)—has reinforced the movement to empower health care consumers, heightened the important link between literacy and health, and challenged the contemporary practices of health education and communication (Nutbeam, 2000). Some observers suggest that advancing health literacy may become a global challenge for the 21st century (Nutbeam & Kickbusch, 2000).

In the United States, interest in health literacy arose from the unexpected findings of the 1992 National Adult Literacy Survey (NALS). According to the survey, 40–44 million of the 191 million American adults were functionally illiterate and another 53.5 million adults had marginally better functional literacy skills (Kirsch, Jungeblat, Jenkins, & Kolstad, 1993). The survey also found that self-reported educational attainment (i.e., years of schooling) did not necessarily translate into a corresponding level of reading or comprehension. Among those with a high school diploma, 16% tested at Level 1—the lowest of five literacy levels—and 36% tested at Level 2. More startling, 4% of those with college degrees tested at Level 1 and 11% at Level 2 (Smith, 1998). These findings raised concerns about the functionality of low literacy adults with regard to health care. Subsequently, the concept of “health literacy” was developed to refer specifically to functional literacy in the health care realm.

Conceivably, low health literacy may have adverse health effects by limiting patients’ ability to comprehend health information and follow written medical instructions, to communicate with physicians and other health care providers, and to negotiate the complexity of health care and obtain proper and timely care. Research that exists has in general related low health literacy to poor health status and unnecessary use of hospital care (e.g., Baker, Parker, Williams, Clark, & Nurss, 1997; Friedland, 1998; Gazmararian, Baker, Parker, & Blazer, 2000; Marwick, 1997; Roter, Rudd, & Comings, 1998; Rudd, Moeykens, & Colton, 2000). The relationship, furthermore, is independent of educational attainment (Baker et al., 1997; Kalichman, Ramachandran, & Catz, 1999; Nurss, 1998). However, establishing the causality is limited by the cross-sectional design of most studies and the lack of attention to mechanisms that link low health literacy to poor health status and increased hospitalization (Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association, 1999). Studies have also treated patients with low health literacy as passive actors and have failed to account for their use of social support and resources in dealing with health problems.

The main purpose of this article is to advance our understanding of the health impact of health literacy by pointing out useful research directions. Instead of providing a comprehensive review of existing research, we propose a research agenda built around two research questions: (1) What are the causal pathways or intermediate steps that link low health literacy to poor health status and high utilization of expensive services such as hospitalization and emergency care? (2) What is the impact of social support on the relationships of health literacy with health status and health service utilization? With regard to the second question, we suggest that social support may moderate the impact of low health literacy on health status and health service use. In other words, whether low health literacy leads to poor health status and excess use of expensive services may be a function of the amount of support and resources that individuals receive from their social networks.

The article is presented in four sections. The first section briefly reviews studies examining the relationships of health literacy with health status and utilization. The second section outlines a conceptual framework explaining how health literacy affects health status and health service utilization. The third section describes the potential moderating effect of social support on the impact of health literacy on health status and utilization. We conclude by summarizing the implications of pursuing the two research questions.

Section snippets

Studies on the relationships between health literacy, health status, and utilization

One of the first and systematic studies on the consequences of low health literacy was conducted by Baker and associates. They investigated how health literacy affected patients’ disease knowledge, health status, and health service utilization (Baker et al., 1997; Baker, Parker, Williams, & Clark, 1998; Williams, Baker, Parker, & Nurss, 1998). The study employed a cross-sectional design and was conducted at two urban public hospitals in the United States. A total of 2669 patients from emergency

Conceptual framework for understanding the connection of health literacy to health status and health service utilization

In this section, we propose a framework that links health literacy to health status and health service utilization. The framework incorporates four inter-related intermediate factors including (1) disease knowledge and self-care, (2) health risk behavior, (3) preventive care and routine physician visits, and (4) compliance with medications. Specifically, the framework suggests that individuals with lower health literacy are likely to have poorer medical knowledge, worse health behavior, less

Social support as a moderator for the relationship of health literacy with health status and health service use

Individuals are social actors, residing in social environments that contain various degrees of support and resources. While low health literacy may have adverse health effects, in order to evaluate precisely the extent of limitation that it places on individuals, we need to account for the social support and resources that people utilize when they encounter problems stemming from their health literacy deficiency. As an example, the NALS found that on average 9–12% of adults received “lots of

Conclusion

Research has consistently linked low health literacy to poor health status. Inadequate reading and writing skills may lead to poor care quality and excess medical services and costs (Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, AMA, 1999). A recent estimate based on data from the 1993 Survey of Income and Program Participation showed that the cost of inadequate health literacy ranged from $30 billion to $73 billion in 1998 US dollars, or about 3.2–7.6% of personal

Acknowledgements

We thank the three anonymous reviewers and a senior editor of the journal for their constructive comments on our paper. Preparation of the paper was supported in part by a grant (1 R01 HS13004-01) from the Agency for Healthcare Research and Quality, US Department of Health and Human Services. Dr. Arozullah is supported by a Career Development Award from the Veterans Affairs Health Services Research and Development Service.

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