This edition's RRR (Reading, reflection and application in reality) looks at what health literacy means for nursing and finds that patient-centred communication is still the answer.
Health literacy has been described as an evolving concept. Its origins are in health promotion, where it was seen as personal skill development through education – in other words, a process of empowerment. More recently, health literacy has been viewed through the lens of patient safety – as a protective process. Either way, if lack of health literacy is a problem, whose problem is it? It’s ironic that health literacy is the new thing needed to ‘navigate the health system’ at a time when health administrators are realising that overly complex systems need to be simplified and made safer. In this learning activity, we’ll look at core ideas in health literacy, and how it can be understood as an interactive and responsive process between consumers and providers of healthcare services.
Reading and reflecting on this article will enable you to:
• Describe components of health literacy.
• Outline reasons why health literacy is important.
• Identify ways your role can promote health literacy.
• Explain why health literacy has come to be seen as a process of interaction.
WHAT IS HEALTH LITERACY?
A theoretical perspective
One literature review and concept analysis found five attributes for defining personal health literacy1:
Reading as a skill set: including recognising words and their meanings, analysing context to understand new terms, and using text structures, such as headings and indexes, to find information in written materials.
Numeracy or quantitative literacy: the ability to read and understand numbers appearing in print and do calculations.
Comprehension or understanding: the process of making sense of new information in context and relating it to prior knowledge or experience.
Being informed and capable of using that information in health decisions about lifestyle, using services and choosing amongst self-care or treatment options.
Functioning successfully in a healthcare consumer role – i.e. navigating the healthcare system by applying new information and problem-solving skills as circumstances change.
The consumer perspective
Speaking from a range of health service experiences, patients in a comprehensive qualitative study identified these key abilities:
• knowing when and where to seek health information
• being able to describe one’s health issues and understand health professionals’ responses
• being assertive in clarifying information to understand it
• literacy skills
• retaining and processing information
• applying information2.
An evolving concept and context
Some writers frame health literacy as a set of skills for use within healthcare settings, others as a capacity to make decisions and choices about health and wellbeing in a broader societal context3. The notion that citizens have responsibilities (to manage their health and choose a healthy lifestyle) that balance their rights (to healthcare and as consumers of healthcare services) means that health literacy clocks in with self-management as an idea whose time has come 3,4.
Broadly speaking, ideas about health literacy lie on a continuum: from a close alignment with the basic functional literacy skills required to follow treatment plans and use health services properly, to a wider conception of literacy as a process of personal and community self-determination and transformation, which includes addressing questions of access and equity, and socio-economic determinants of health5.
Definitions of health literacy seem to vary according to their historical context (i.e. contemporary thinking, policy developments, and characteristics of health service provision) and whether the perspective is health or healthcare at an individual, system, or population level.
An integrated definition
A recent integrative review of seventeen definitions and twelve models arrived at this comprehensive and ‘all inclusive’ definition:
"Health literacy is linked to literacy and entails people’s knowledge, motivation, and competences to access, understand, appraise, and apply health information in order to make judgments and take decisions in everyday life concerning healthcare, disease prevention, and health promotion to maintain or improve quality of life during the life course6."
This definition can be fitted to individuals by replacing the public health perspective with a personal health perspective: ‘…and take decisions in everyday life concerning being ill, being at risk, and staying healthy’6.
WHY HEALTH LITERACY MATTERS
#1 Patient outcomes
In relation to health outcomes for individuals, lack of health literacy is seen as a risk factor and having it seen as a personal asset at three critical points – accessing health care, interacting with health professionals, and self-care5. Compound difficulty at these three points, and it becomes obvious why adequate health literacy is thought to be especially important in conditions that require significant and complex self-care7.
A recent systematic review for the United States-based Agency for Healthcare Research and Quality (AHRQ), commonly cited, reports good quality evidence for associations between lower health literacy and
• use of healthcare services: increased hospitalisation, greater use of emergency care, lower use of mammography, and lower use of influenza vaccination;
• health outcomes: poorer overall health status and higher risk of mortality for older people, poorer ability to interpret labels and health messages, and to demonstrate taking medications appropriately8.
The idea that assessing health literacy – ‘the newest vital sign’ – would help clinicians better meet patients’ learning and communication needs has been supported with the development of validated tools acceptable to patients and quick to use9,10. But there are several arguments against assessing patients’ literacy:
• approaches recommended for those with limited literacy (such as easy-to-read materials) should be considered ‘universal precautions’;
• all patients have the right to jargon-free explanations and to have clinicians confirm their comprehension – clear communication is not a scarce resource for targeting those most in need;
• screening has the potential for harm – those with limited literacy can feel ashamed about their lack of reading and writing skills and may be adept at concealment – in such situations, assessment may be stigmatising and alienating;
• clinicians are reluctant to conduct assessments that could embarrass patients with limited literacy11,12,13.
#2 Demands of modern healthcare
Our health care system places significant reading and comprehension demands on individuals14.
The good news is that the great majority of [the] population is deficient only in literacy skills – not in intelligence.They can learn from nearly any health instruction that is designed and presented in ways suitable for them15.
Parallel to the realisation that a significant proportion of adults may have limited reading and numeracy skills is the realisation that healthcare information is often not well-designed and exceeds the abilities of people with average or good literacy, and that common tasks for patients (adjusting medications and understanding clinical results or nutrition information) require reasonable numeracy skills12,14,15. Moreover, advances in clinical science and evidence-based medicine require advanced numeracy skills for clinicians and patients alike in understanding probability in disease risk and treatment benefit16,17.
Considerable research effort has been given to determining which methods and approaches reduce cognitive burden and are effective in meeting patients’ information and decision-making needs. There are many evidence-based resources designed to help clinicians:
• ensure that health materials use plain language, and conform to information design principles such as ordering, chunking, readability, and testing with end-users16
• present numerical information and concepts in visual formats that facilitate understanding, such as decision-aids with graphic representations of incidence and probability17,18
• remember that ‘telling is not teaching’ and ‘what is clear to you, is clear to you’ and to use effective teaching methods (such as limiting information-giving to just a couple of important points, using interactive communication strategies or the ‘teach-back’ method, checking for comprehension, and reinforcing over time) 9,12,19,20.
#3 Patient safety
The safety of patients cannot be assured without mitigating the negative effects of low health literacy and ineffective communications on patient care12.
Improving health literacy contributes to patient safety, in that better knowledge and understanding helps people ask the questions that need to be asked about their care, makes them aware of (and helps them avoid) risks associated with treatment and helps them join up fragmented services13.
Facilitating and supporting patient involvement in safety practices acknowledges what they already know: that health systems and clinicians can fail in their duty of care. Approaches that involve patients in ‘checking with’ rather than ‘checking-on’ build the care partnership, and rather than undermining clinicians, support the mindfulness that keeps practice safe12.
Adverse drug events resulting from patient misunderstanding are common and often serious, but unnecessarily difficult or poorly expressed instructions can be the direct cause21. More generally, communication breakdowns between providers and patients are common root causes of preventable adverse events. The obligation to provide a culturally safe environment and information that patients can understand lies with health services and clinicians12.
An interaction between service users and providers
The 21st century has seen the construction of a new understanding – health literacy as an interaction between the demands of healthcare systems and the skills of individuals22, representing a significant shift from a deficit model in which it is the patient with, or as, the problem5.
This shift acknowledges that we have to ask whether low literacy is the cause of poor outcomes or whether it is a marker for other problems that are the actual sources of poor health (e.g. low socioeconomic status, poor sense of self-efficacy, distrust of healthcare providers, or poor access to care)19. The AHRQ review offered some answers:
• a number of the studies concluded that knowledge, patient self-efficacy, and stigma act as mediators or intermediaries in the casual pathway between low health literacy and health outcomes, and thus may account for the negative impact of low health literacy
• further, evidence for social support and healthcare system characteristics as potential mediators and moderators between health literacy and health outcomes was identified8.
If health literacy can be thought of as ‘the currency needed to negotiate the system’23 – those needing the most from healthcare services may be quite challenged in their journey7. The metaphor suggests that giving attention to how the system works pays off but begs the question of whether services are designed for service users.
In the new thinking, healthcare organisations are encouraged to begin ‘their long journey to becoming health literate’ and to take immediate actions to bridge gaps where service users stumble or turn away24. A significant and potentially transformative shift for health service provision lies in another new approach – experience-based design – which involves health service providers “thinking with” the people who use services, rather than “thinking for” them25,26.
Nurses have a professional and ethical obligation to communicate in a clear, purposeful way that addresses the unique information needs of each patient. Because knowledge is power and comprehension is empowering, the goal of all patient interactions should be to empower the patient to obtain, understand, and act on information that is needed for optimal health20.2011:331
Thinking about health literacy as something created through interaction connects with the idea of literacy as a social practice – it involves recognised ways of doing things, through which we come to understanding and make sense of experience30. Having adequate knowledge and understanding is necessary, but not sufficient, in a conception of literacy in which people act on what they know and understand to improve or manage their situation. Self-efficacy, or a sense of confidence about one’s ability, and motivation are needed for action.
What then does health literacy mean in the encounter with ‘the person before you’4, at that moment in the patient or client role? It is our responsibility, as nurses, to create a trusting and respectful interaction that helps patients and families/whanau be open to learning: to listen responsively, to hear their understandings, to make it easy for them to ask questions, to communicate clearly in ways that are culturally safe, to acknowledge their work in self-management and engaging with health services, to affirm and expand their knowledge and capability, and to bring what we can to the interaction to make the situation or learning task less demanding. In short, to communicate in a way that tells the patient, “It’s all about you”.
ABOUT LITERACY: CAUTIONS AND CRITIQUES
New Zealand’s results in international literacy surveys are often cited as concerning. According to the 2006 Adult Literacy and Life Skills Survey (ALL):
• 56.2 per cent of adult New Zealanders have poor health literacy skills (i.e. below the minimum required to meet the demands of everyday life and work)
• although Maori and non-Maori with a tertiary education are more likely to have good health literacy skills than those with lower levels of education, in general, Maori have poorer health literacy statistics than non-Maori28.
Designed for international comparisons and using only written materials, the ALL has been criticised for measuring a ‘test literacy’ unrelated to real life and cultural context29. However, speaking and listening skills are critical for ‘being on the same page’ in conversations between clinicians and patients – verbal exchange and response to non-verbal cues means that an ‘interactive literacy’5 can be created in the encounter.
Further, as literacy is particular to a context29, a person otherwise considered highly literate may be functionally illiterate when encountering new and complicated vocabulary and concepts in an unfamiliar setting1, more so if their ability to pay attention and understand is compromised, for example, by anxiety or pain.
Recommended reading and resources
SPEROS Carolyn I (2011). Promoting health literacy: A nursing imperative. Nursing Clinics of North America 46(2011):321-333.
Health literacy for nurses, a project undertaken jointly by the New Zealand Nurses’ Organisation and the College of Nurses Aotearoa New Zealand, comprises a Position Statement at www.nzno.org.nz/LinkClick.aspx?fileticket=GPbcXpviZxM%3D, and A call to action at www.nzno.org.nz/LinkClick.aspx?fileticket=fB1oBdHhRWA%3D
Medline has a collection of health literacy information resources here www.nlm.nih.gov/services/queries/health_literacy.html
An environmental scan of health literacy initiatives in New Zealand, undertaken in 2011, is on the Health Quality and Safety Commission website
The website www.healthliteracy.org.nz/ has resources relevant to the New Zealand context. It is supported by Workbase, a not-for-profit organisation committed to improving the literacy, language and numeracy skills of New Zealanders.
Workbase and Health Navigator, hosts of the conference Health Literacy: From Discussion to Action held May 2012 in Auckland, have presentations available at www.healthliteracy.org.nz/conference2012
Visit Write Limited at www.write.co.nz for details of a workshop on writing health information clearly, or to download a free ebook Unravelling Medical Jargon.
A scan of the 1996 classic (but now out of print) book by Doak, Doak and Root, Teaching Patients with Low Literacy Skills is downloadable from www.hsph.harvard.edu/healthliteracy/resources/doak-book/index.html Particularly useful for nurses giving information are Chapter 5 on the comprehension process and Chapter 9 on teaching.
Roett and Wessel’s guide, Help your patient “get” what you just said is available from http://dev.clinicians.org/wp-content/uploads/2012/04/healthliteracyarticle.pdf
An excellent resource on organisational responsibilities for health literacy is Brach et al’s 2012 discussion paper Ten Attributes of Health Literate Health Care Organizations, available here http://iom.edu/Global/Perspectives/2012/HealthLitAttributes.aspx
References and bibliography - coming soon