Health Literacy Levels of People with Disabilities

Health literacy:

Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. – Healthy People 2010

The U.S. Department of Health & Human Services (2008) has estimated that of the 240 million adults older than 18 years of age, 77 million (32%) have basic or below-basic health literacy, which is generally defined as the ability to read instructions and explain why a person should be tested for a disease/condition.

Health Literacy Levels of People With Disabilities:

The complexities involved in the treatment of many conditions further complicate assessments of health literacy among people with disabilities. Specifically, the vast continuum of types of disability, as well as the lack of adequate disability indicators in longitudinal, nationally representative databases, are factors that often impede these assessments (Field & Jette, 2007; Hollar, 2005; Hollar & Moore, 2004; Hollar, McAweeney, & Moore, 2008). For example, people with sensory limitations (e.g., poor vision or hearing) generally experience positive health outcomes (Harrison, Mackert, & Watkins, 2010; Munoz-Baell, Ruiz-Cantero, Alvarez-Dardet, FerreiroLago, & Aroca-Fernandez, 2011; Pereira & Fortes, 2010). However, people with mobility limitations often report poorer health outcomes that are due to a lack of access to physical activity/exercise accommodations, pain, and secondary conditions (Iezzoni, Park, & Kilbridge, 2011; World Health Organization, 2011).

 Access to many health and exercise facilities for people with mobility disabilities is limited, and people with various disabilities report inadequate health information and autonomy in health decisions (National Council on Disability, 2009). People with mental illness or intellectual and developmental disabilities may have the greatest need for health literacy and health communication transmission/translation (Chew, Iacono, & Tracy, 2009). For example, Lincoln et al. (2006) found that a poor quality of life and low level of health literacy were significantly associated with people receiving treatment for depression.

Health Disparities Experienced by People with Disabilities:

Despite the exclusion of many people with disabilities from nationally representative databases and the lack of health literacy measures for this population of more than 50 million (Field & Jette, 2007), a substantial body of research demonstrates that people with disabilities experience substantial disparities in health outcomes, employment, social participation, and health risk behaviors compared with people who do not have disabilities (Brucker & Houtenville, 2015; Hollar & Moore, 2004; Hollar et al., 2008; Rimmer, Rowland, & Yamaki, 2007; Seekins et al., 2006). Multivariate factors are involved in these disparities, including low socioeconomic status, barriers to access to public and private.

In any health literacy communication interaction, it is important to match provider perceptions with actual patient literacy. The goal is to maximize true positives (i.e., we think that the patient is health-literate and he or she actually is) and true negatives (i.e., we think that the patient is not health-literate and he or she actually is not).

Human Decision Making in Health Literacy Tversky and Kahneman (1974) and Kahneman (2002) demonstrated that most people, regardless of educational level, use poor heuristics and fallacies in making decisions. Such fallacies include stereotyping patients, anchoring medical decisions based upon initial information while discounting later information, and basing diagnoses on similar patients previously examined (Croskerry, 2003). Croskerry presented 32 types of fallacious clinical reasoning that can result in incorrect patient diagnoses/medical errors, and he suggested 11 debiasing strategies (e.g., awareness, feedback, cognitive forcing strategies) to reduce these errors.

Teamwork strategies in health care (Leggat, 2007) include these strategies to improve communication and information clarity among health team members for improved patient outcomes and safety. Furthermore, Newton et al. (2008) studied successive waves of medical school classes that exhibited declining empathy toward patients in general. Consequently, the health literacy construct may require not just patient literacy but also the attitudes and decision-making processes of clinicians as a provider literacy component, thus making health literacy an interactive issue among patients, family, and the providers who represent the health care team.

 Health literacy is not a patient issue from a medical model perspective, but it is an interactive issue, thus involving communication, understanding, and empathy between patient and provider. A communication model of health literacy involving all parties will involve addressing reasoning for clear communications to promote patient understanding along with respect for patient autonomy and knowledge. Certainly, differences in literacy will exist based upon specific types of disability (e.g., intellectual and developmental disabilities) and levels of education. Providers will need to tailor health communications toward these differences while addressing their own decision-making and judgmental biases. In other words, providers and patients alike will be responsible for clear communication of health needs, consent for procedures, understanding of each person’s role in the process, mutual respect, and the right of any person to raise concerns to which the team will respond.

To detect true health literacy and illiteracy, or shades thereof, our judgments, perceptions, and measurement tools must maximally match the truthfulness and falseness of reality (Figure 2). If a person with a disability is health-literate on a specific topic, then the provider’s assessment tool for health literacy should indicate that fact (i.e., true positive). If a person with a disability is health-illiterate on a specific topic, then the assessment tool likewise should indicate that fact (i.e., true negative). Given that tools and judgments can be inaccurate to some degree, even for diagnostic tests, Swets et al. (2000) strongly recommended the use of multiple assessments to triangulate assessment decisions (Figure 2). Unfortunately, clinicians and caregivers have limited access to assessment measures that have been rigorously tested for psychometric reliability and predictive validity (Messick, 1988).

Many educational and psychological questionnaires have been briefly tested for reliability (i.e., precision or repeatability of the questions) but have not been validated (i.e., accuracy in measuring the true, specific psychological concept rather than something else). A valid measurement will measure what it claims to measure (construct validity) and strongly predict (predictive validity) its measured behavior (e.g., adherence to medication use, abstinence from substance abuse).

Conclusion :

Heath care communication is central to health literacy and understanding among all members of the health care team, not just the patient. Social systems have been slow to move beyond physical accommodations alone to total inclusion models with accommodations for human interactions and communication as well, in the same way that an organization would provide translators to accommodate language differences in global cooperative projects. Health literacy remains an elusive concept that is continuing to be researched and assessed.

References :

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·         Aulagnier, M., Verger, P., Ravaud, J. F., Souville, M., Lussault, P. Y., Garnier, J. P., & Paraponaris, A. (2005). General practitioners’ attitudes towards patients with disabilities: the need for training and support. Disability & Rehabilitation, 27(22), 1343–1352.

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