In the United States, a large proportion of the population falls into the category of having low literacy skills. “A long-awaited federal study finds that an estimated 32 million adults in the USA — about one in seven — are saddled with such low literacy skills that it would be tough for them to read anything more challenging than a children’s picture book or to understand a medication’s side effects listed on a pill bottle.” Toppo (2009). This poses challenges for these individuals seeking services and assistance online using websites that have traditionally not catered for this segment of the population. Services including health information for vaccinations, information on the availability of free clinics in the area, and advice and support from organizations such as Planned Parenthood, simply aren’t as easily accessible to this group of the general population.
This article reveals some of the literature currently available in this area via secondary sources of information that provide insight into the challenges facing people with low literacy skills. The following research themes are uncovered in the sections that follow. The link between people with low-literacy skills and income level, accessibility to low-literacy users of information on health services and free clinics, and addressing the needs of low-literacy parents.
The research themes touch on a more broad challenge of search effectiveness in the online environment. The sources highlighted in this literature review will be used to build on a research study involving eye tracking research on persons will low literacy rates and/or mild cognitive impairment. The study will involve testing a group of individuals through a number of search and retrieval tasks. These tasks will require the user to find information in various state and federal government web sites including the following:
- information regarding necessary vaccinations for their children or dependents
- information and location of free clinics and their available services
- information regarding the acquisition and administration of birth control
People who fall into the category of low literacy skills often need access to the above information more so than others. The results of the final eye tracking study will be made available in the hopes that they will help improve some of the current public and commercial web sites that these users need to access. The information that follows was compiled from a series of secondary peer reviewed articles, cited throughout, and listed in the references section..
Low Literacy Users and The Low Income Connection with Health Care
Weiss & Palmer (2003) conducted a study to determine if there was a relationship between health care costs and level of literacy. Their results found that adjusting for socio-demographic variables; they were able to find a statistically significant relationship showing higher health care costs for lower literacy patients. Their study supported other research that found “persons with limited literacy skills have poorer health status, are more apt to be hospitalized, and make more visits to emergency rooms than their more literate counterparts.” Weiss and Palmer investigated mainly lower income people who were in the Medicaid program.
Many low literacy users are not only under informed on health information, but they are also very limited on where they can go to receive proper treatment because of the high costs associated with it. Many of these individuals have come to rely on free services, where available, or they have simply not reached out for help until their condition has become too serious to ignore. This in itself would also contribute to the higher than average costs of health care for these individuals, where preventative care could have resolved some of these concerns before they became serious health issues. Unfortunately there are also challenges associated with free clinics, which will be explored in greater depth later in this article. The Grant Watch Report released an article in 2007 highlighting that the number of free physician services is on the decline and more is needed in order to strengthen volunteer health care programs. Isaacs & Jellinek (2007).
An earlier study in 1986 released by Public Health Briefs, outlined research conducted on 238 homeless adults in Los Angeles. A third of the participants reported that their health was fair to poor, over half reported they had no regular source of care, and 81 percent were without health insurance. Robertson & Cousineau (1986). Homeless people are high on the risk scale, however other demographics are also at risk who fall under the low literacy umbrella. Take for example seniors, who may already have limited access to health coverage due to costs. Sudore et al (2006) state “Older persons not only have a greater need for complex disease management and decision-making, but are also at risk for normal cognitive slowing and functional decline. These factors, coupled with poor access to health care, place older people with limited health literacy at particularly high risk for poor health outcomes.” They conclude that limited health literacy was associated with poor access to health care and a risk factor for health disparities in older people. This is further confirmed in an earlier study by the Center for Health Marketing, where they hypothesized that elderly patients had limited ability to read and comprehend medical information pertinent to their health. Gazmararian et al (1999). Their research found that low health literacy may impair their ability to care for their medical problems.
Some efforts are being made to help bridge the divide between low literacy users and the services they need. Hacker (2005) discusses one such initiative in expanding technology access for adults with development disabilities through technology solutions. Xie et al (2012) conducted a study on the advantages an e-health tutorial would bring to older adults. They used multiple participatory design techniques to determine older adult preferences for design features of an integrated e-tutorial. They found these materials were further enhanced with the addition of multi-media cues. More needs to be done in the way of providing readily accessible services and information online to this segment of the population.
Neesha & Wong (2008) determined that low literacy users take on average up to 8 times more time to retrieve information using online search than do their literal counterparts. The information retrieved is also typically less accurate. Furthermore it was found that low literacy users used a much less focused set of search terms and the back-tracked much more frequently. Advances can be made to help alleviate some of these concerns and as modern information systems are developed, accessibility for low literacy users needs to be given a high priority, especially in cases of heath information.
Accessibility of Health Services to Low Literacy, Limited Income Patients
Individuals and families of lower income are limited in the type of care they can receive in the United States. Programs such as Medicare and Medicaid exist for various needs, however they do not address all needs especially in cases of homelessness, the elderly, immigrants, and families on the border of poverty who are either uninsured or under-insured. Many free clinics have been established across the country, which are run by volunteers, to fill some of the gap in this social safety net. These have ranged from community volunteer clinics, public hospitals, to educational student-run clinics. In recent years the emergence of retail based clinics have even started providing services to people with little or no insurance and no means to pay for health care.
Geller et al (2004) revealed in a report on free clinics, the extensive services offered, which help support over 200,000 patients across the country. They explain that care at many of these volunteer-based clinics offer services completely free of charge. Others request a nominal fee or operate on a sliding scale fee structure based on the income level. The last decade has seen a rise in popularity of student-run medical clinics offered at various medical schools across the country. Simpson & Long (2007) wrote a report detailing information about these types of free clinics and the services they offer to patients who need them. They concluded that medical student-run health clinics “offer myriad services to disadvantaged patients and are also a notable phenomenon in medical education.”
Free clinics are the only option for many who either cannot afford or do not have the option for comprehensive health care. Immigrants are a segment of the population who often fall into the uninsured or under insured categories. Even if they have health insurance, research has shown these individuals typically receive inferior care to their U.S. citizen counterparts. Many of them do not qualify for Medicaid or job-based insurance policies. Ku & Matani (2001) concluded in their study of the relationship between health care availability and immigration status that “non citizen immigrants and their children have large gaps in their health insurance coverage and access to health care, even when the children are citizens.” Another form of clinic has emerged in recent years to provide retail-based health care services. A major development in this effort has been a move towards large-scale acceptance of insurance. Laws & Scott (2008) researched these types of clinics, for which at the time of writing, over 1000 had opened across the country. Another interesting aspect of these ‘retail-based’ clinics is that they have contributed to providing basic access to care to those without insurance.
While different types of free clinics operate throughout the United States, major challenges still remain in providing services to those in need. These clinics are costly to operate and require a great deal of commitment from their volunteers. Many of them “face mounting time and financial pressures that restrict their ability to volunteer.” Isaacs & Jellinek (2007) suggest that specific actions such as “getting seed grants, improved communication and interaction within the field, leadership development, advocacy, and stronger national leadership” is needed to strengthen these organizations. Furthermore, because many of the volunteers are already stretched in both financially and in terms of their time volunteered, little room is left for improving their visibility to the target group of people most in need of their services. Those who fall into the category of having low literacy skills have even less chance of locating the services and information needed both locally and online.
Eng et al (1998) further elaborate on this problem in terms of the need to bridge the gap of health care access and knowledge between the ‘haves’ and the ‘have nots’ They state that those who have preventative health issues, but lack insurance, are the least likely to have access to technologies and services that could help them. People who typically fall into this category include illiteracy, disability and low income. Even with the efforts in place with the aforementioned volunteer systems, these people may either just not have the means to find out about them or they lack the necessary skills online to search for the information they need. Furthermore the clinics offering services to these individuals need to to be “aware of the prevalence of health care problems and need to identify patients with poor health literacy skills.” Gazmararian et al (1999). This can be an ongoing challenge to those clinics that are already maxed out in terms of the resources and services their volunteers offer. More work needs to be done in order to make these services and their online systems more accessible to this especially vulnerable segment of the population throughout the country.
Addressing the needs of Low-Literacy Parents: Access to Birth control and vaccinations information
Unintended pregnancy rates have remained persistently high among low-income, young women in the United States, while decreasing unintended pregnancy can result in healthier women and children (Harper et al., 2010; Phares et al. 2012). The clinical visit is the primary source of reliable information for low-income women to obtain highly effective methods and more than 4,400 Title X clinics in the United States provide contraceptive services to low-income populations.
However, according to Phares et al. (2012) statistics show that nearly half of all pregnancies are unintended and of these unintended pregnancies, 43% ended in abortion in 2006. Unintended pregnancy rates show highest among women who are low income, younger than 30, unmarried, and of Black or Hispanic ethnicity. In their article, Phares et al. use the data from the Healthy People 2010 (n.d.) and describe that the national health objective for family planning goal was to increase the proportion of intended pregnancies to 70%. “This objective was not reached, and remains a national health objective for 2020.”
Despite the fact that higher rates of unintended pregnancy among low-income and less educated women, Borrero et al. (2009) argue that there is no published literature focusing on contraceptive decision-making process of women in the United States and how race may affect this process. But however, it they note patient preferences are proved to vary by race/ethnicity with regard to invasive medical procedures. They discuss that “choosing a contraceptive method is a complex process that presumably involves the interplay among patient preferences, patient-doctor communication, and health-care system-level factors”.
In their article, Fertility Awareness-Based Methods: Another Option for Family Planning, Pallone and Bergus (2009) explain alternative methods of family planning. Fertility awareness-based methods are “methods that use physical signs and symptoms that change with hormone fluctuations throughout a woman’s menstrual cycle to predict a woman’s fertility”. Their research shows that “a woman can reduce her chance of pregnancy by abstaining from coitus or using barrier methods during times of fertility”.
On the other hand, according to Jacobson et al. 1999 the target rate of Pneumococcal immunization established by the US Public Health Service for Pneumococcal immunization is 60%, while current rates for elderly and high-risk patients are only one third to one half of that. In their article, they argue that “limited or marginal literacy, which affects nearly 100 million Americans, especially the elderly, may contribute to these low rates of immunization”.
Their solution however appears simple. In their research they devise a simple, low-literacy educational tool. Using a One-page, low-literacy (below fifth-grade level) educational handout encouraging patients to “ask your doctor about the pneumonia shot” vs a control group they compared vaccination rates of patients who received pneumococcal vaccination, documented by chart audit and rates of patients who self-reported having discussed vaccination with their physicians. They found that “patients in the intervention group were 4 times more likely to have discussed the pneumococcal vaccine with their physicians than patients in the control group”. As a result, they proved that “a simple, low-literacy educational tool increased pneumococcal vaccination rates and patient-physician discussions about the vaccine in an elderly, low-literate, indigent, minority population.”
References
- Bo Xie, Tom Yeh, Greg Walsh, Ivan Watkins, and Man Huang. 2012. Co-designing an e-health tutorial for older adults. In Proceedings of the 2012 iConference (iConference ’12). ACM, New York, NY, USA, 240-247. DOI=10.1145/2132176.2132207 http://doi.acm.org/10.1145/2132176.2132207
- Emily Hacker. 2005. Expanding technology access for adults with developmental disabilities at F.E.G.S health \& human services network. SIGACCESS Access. Comput. 83 (September 2005), 55-58. DOI=10.1145/1102187.1102196 http://doi.acm.org/10.1145/1102187.1102196
- Eng, T. R., Maxfield, A., Patrick, K., Deering, M., J, Ratzan, S., C., & Gustafson, D., H. (1998). Access to health information and support: a public highway or a private road? JAMA. 1998 Oct 21;280(15):1371–5. doi: 10.1001/jama.280.15.1371.jpp80018
- Gazmararian, J., A., Baker, D., W., Williams, M., V., Parker, R., M., Scott, T., Greemn, M., Ren, J., Koplan, J., P. (1999). Health literacy among Medicare enrollees in a managed care organization. Journal of the American Medical Association. 281(6): 545–551. Retrieved from: http://www.centerforhealthmarketing.org/documents/healthLiteracyamongmedicareenrolleesinamanagedcareorganization_000.pdf
- Geller, S., Taylor, B.M., & Scott, H.D. (2004). Free Clinics Helping to Patch the Safety Net. Journal of Health Care for the Poor and Underserved 15, no. 1, 2004: 42–51.
- Isaacs, S.L., Jellinek, P. (2007). Is there a (volunteer) doctor in the house? Free clinics and volunteer physician referral networks in the United States. Health Aff (Millwood) 2007;26:871-6. Retrieved from: http://www.isaacs-jellinek.com/files/pdf/publications/2007/Volunteer%20Doctor.pdf
- Ku, L., Matani, S. (2001). Left out: immigrants’ access to health care and insurance. Health Aff. 2001;20247-256. Retrieved from: http://www.wkkf.org/~/media/62334EFF371E494C99F68AA17AE8BDBF/1622640.PDF
- Laws, M. & Scott, M.K. (2008). The Emergence of Retail-Based Clinics in the United States: Early Observations. Health Affairs 27, no. 5 2008: 1293–1298. Retrieved from: http://www.trinity.edu/departments/healthcare/content/Articles%20-%20Kaissi/Laws%20-%20The%20Emergence%20of%20Retail-Based%20Clinics%20in%20the%20United%20States.pdf
- Neesha Kodagoda and B L William Wong. 2008. Effects of low \& high literacy on user performance in information search and retrieval. In Proceedings of the 22nd British HCI Group Annual Conference on People and Computers: Culture, Creativity, Interaction – Volume 1 (BCS-HCI ’08), Vol. 1. British Computer Society, Swinton, UK, UK, 173-181.
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- Simpson, S., A., & Long, J., A. (2007). Medical student-run health clinics: important contributors to patient care and medical education. J Gen Int Med 2007; 22: 352–6. Retrieved from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1824759/
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- Toppo, P. (2009). Literacy study: 1 in 7 U.S. adults are unable to read this story. USA Today. Retrieved from: http://usatoday30.usatoday.com/news/education/2009-01-08-adult-literacy_N.htm
- Weiss, B., D., Palmer, R. (2003) in press. Relationship between health care costs and very low literacy skills in a medically needy and indigent Medicaid population. Journal of the American Board of Family Practice. Retrieved from: http://www.jabfm.org/content/17/1/44.full
- Harper, C., Brown, B., Foster-Rosales, A., Raine. T. (2010). Hormonal contraceptive method choice among young, low-income women: How important is the provider?, Patient Education and Counseling, Volume 81, Issue 3, Pages 349-354, ISSN 0738-3991, 10.1016/j.pec.2010.08.010.
- Pallone, S. & Bergus, G. (2009). Fertility Awareness-Based Methods: Another Option for Family Planning. The Journal of the American Board of Family Medicine 22 no. 2 147-157
- Phares, T., Cui, Y., Baldwin, S. (2012). Effective Birth Control Use among Women at Risk for Unintended Pregnancy in Los Angeles, California. Women’s health issues : official publication of the Jacobs Institute of Women’s Health, volume 22 issue 4 Pages e351-e358 DOI: 10.1016/j.whi.2012.04.002
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- Jacobson, T., A., Thomas, D., M., Morton, F., J., Offutt, G., Shevlin, J., Ray, S. (1999). Use of a low-literacy patient education tool to enhance pneumococcal vaccination rates: a randomized controlled trial. The Journal of the American Medical Association 1999;282:646-50. Retrieved from: http://jama.ama-assn.org/content/282/7/646.full
