Information, Communication and Health Literacy
Health Promotion and Disease Prevention
’The problem with communication is the illusion that it has been accomplished.’
George Bernard Shaw
Here we discuss health information, communication and the role of health literacy. We begin with an introduction to communication theory and discuss the e-health revolution, research about health care professional—patient communication and health message framing. We consider how health literacy can influence people’s ability to access, understand and use health information. Finally, we examine strategies to make health communication more effective by enhancing the skills of health care providers and service users, simplifying the health care system and promoting health-sustaining environments.
What is Health Communication?
Health communication refers to all interpersonal, organizational or mass communication that concerns health. It can occur in various contexts (e.g., doctor—patient communication, public health campaigns); be applied in a variety of settings (e.g., clinics, schools, workplaces, online communities); use a variety of channels (e.g., face-to-face communication, posters, social media); deliver a variety of messages (e.g., healthy eating, smoking cessation, safe sex); and serve a variety of purposes (e.g., risk assessment, communication of diagnosis, service awareness, advocacy). To understand the nature of health communication, first we need to understand what is meant by the term ’communication’.
Communication refers to the exchange of information between one person, or ’entity’, and one or more others. There is a magic to excellent communication that can be instantly recognized, but precisely how this ’magic’ is achieved is slightly mysterious. To describe how messages are transmitted in the communication process, Shannon and Weaver (1949) proposed one of the best-known (and longest lasting) models of communication. As we have seen, most models have a shelf life of about 15 or 20 years, but this model has been mentioned in dispatches for 65 years and is about to draw its pension. The model has five basic components:
· Source — where the message is coming from.
· Transmitter — something that ’encodes’ the message into signals.
· Channel — where encoded signals are transmitted.
· Receiver — something that ’decodes’ the signal back into the message.
· Destination — where the message goes.
As an example, writing and reading this book form part of a communication process. As authors (source), we have a message to communicate to you, our reader (destination). We transmit this message through printed text (transmitter) using this book (channel). You read the book with your eyes and then decode the message with your brain (receiver). Hopefully the message will reach you as we originally intended! However, noise can also interfere in the communication process. Noise can be translated literally as physical noise (e.g., a crackly phone line or loud music in the background), cognitive noise (e.g., being distracted by other concerns such as remembering to telephone a friend, feed the cat or water the pot plants), affective noise (e.g., you may be feeling anxious about a forthcoming meeting with your instructor), or socio-cultural noise (e.g., we write ’cool’ as in ’temperature’ and you read ’sick’ as in ’awesome’). Considering these factors, it is important that all forms of noise are minimized.
Originally developed in a technical report for a telephone company, Shannon and Weaver’s model evolved over time and is the simplest and most influential model of communication. As a receiver of health information, it is important to consider the message and its source. This is a useful descriptive model that serves a didactic function but precious little more. What is the message being communicated? How reliable and accurate is the source? For health information providers, it is important to consider the purpose of communication and the target destination — who are they trying to reach and why? How will they effectively reach their audience considering personal backgrounds, capabilities, and socio-cultural contexts in which they operate? What would be the best mode of communication to transmit information? How can distortions (noise) be minimized and clarity in understanding maximized? What are the factors that compete for the recipients’ attention and what strategies can be used to ensure that the communication aims are achieved? These are some questions health communication researchers look into.
In this chapter, we discuss health care professional—patient communication, health-message framing, e-health and m-health. We also consider how health literacy influences effective health communication and the strategies that can be used to promote it.
Health Care Professional—Patient Communication
Effective communication between health care professionals (HCPs) and patients is integral to health promotion, disease prevention and treatment, and is an essential skill that can greatly improve the quality and efficiency of care. The way HCPs relate to and communicate with service users can have a profound impact on their psychosocial adjustment, decision-making, treatment compliance and satisfaction (Rodin et al., 2009). As shown in Figure 14.1, there are direct and indirect pathways that link effective communication with health outcomes (Street et al., 2009). The direct path highlights benefits related to improved survival and remission rates, enhanced emotional well-being, pain control, functional ability, vitality and reduced suffering. Good communication may also facilitate better HCP—patient relationships, which can improve intermediate outcomes, such as access to care, treatment adherence, self-management, support and trust in the health care system.
Figure 14.1 Communication and health outcomes
Source: Adapted from Street et al. (2009)
In a ’classic’ study, Byrne and Long (1976) identified different doctors’ styles of communicating with patients. They analysed audiotape interactions from 71 GPs and about 2,500 patients. They identified four diagnostic styles and seven prescriptive styles used by the doctors. These styles constituted a continuum from ’patient-centred’ to ’doctor-centred’ styles. A patient-centred communication style makes use of the patient’s knowledge and experience through techniques such as silence, listening and reflection, whereas a doctor-centred communication style makes use of the doctor’s knowledge and skill with minimal input from the patient. Using leadership theory, Huynh and Sweeny (2013) updated these communication styles and outlined three patterned approaches to patient care among clinicians: (1) laissez-faire (negligent and unsympathetic towards patients); (2) transactional (sets health goals and provides patients with instructions, feedback and reinforcement to pursue these behaviour goals); and (3) transformational (provides health goals, inspires and motivates patients to be personally engaged in those goals). Using patient-reported data and observer ratings, it has been suggested that the transformational patient care style is the best predictor of patient satisfaction and health expectations compared to other communication styles (Huynh et al., 2016).
Since the 1970s there has been a movement towards a consumerist model of health care that places patients to the fore. While doctors and HCPs were once viewed as figures of authority, patient empowerment has become a trend that encourages service users to question authority, demand more from practitioners and be more proactive in their own health care. The major criticism of doctors’ traditional communication style was that it was characterized by working to rigid agendas and little listening to patients’ accounts and discussion of treatment options. Thus, a more patient-centred approach has been called for and, to varying degrees across different settings, this has been received. Of course, like anything else, there are huge cultural variations and wide individual differences between physicians, and in what any individual patient actually needs and wants. For example, a patient who has a high internal locus of control and high health value is more likely to seek health information that he/she can use to improve their health chances (Wallston et al., 1976). Furthermore, people’s perceived capacity to control their chronic condition can mediate the association between the doctor—patient relationship and health-related distress, especially among people with diabetes (Bridges and Smith, 2016).
It is also important for physicians to consider the varying needs of patients and how these can change over time. In a study exploring patients’ experiences of an initial consultation in oncology, Fuber et al. (2015) found that patients’ experiences of receiving a diagnosis differed both between participants and within the same person. Narratives suggest that patients needed information that could help them to protect themselves and/or family members from distress and to understand the practical implications of their diagnosis. Thus, physicians need to learn how to adopt a communication style that will encourage patients to talk about their needs and reflect on how to facilitate this dialogue from the start of consultations and throughout investigations and treatment.
Patient-centred communication (PCC) refers to communication among HCPs, service users and their families that is intended to promote patient-centred care. Patient-centred care is ’compassionate, empathetic and responsive care that reflects the needs, values and preferences of patients’ (Institute of Medicine, 2001). PCC is a communication style that aims to elicit and understand the perspectives of patients and their families about the patient’s particular health condition, its management and treatment. Its aim is to reach a shared understanding of the patient’s health condition that takes into account the psychosocial contexts that underpin their experiences. Shared decision-making (SDM) is at the centre of patient-centred communication. In the UK, the government has made a strong commitment to SDM through the Health and Social Care Act 2012. The Act incorporates a commitment to involving patients in decisions about their care and treatment. Although it is a step in the right direction, policy-level initiatives are empty without adoption in practice. A systematic review on practitioners’ attitudes towards SDM suggests that doctors generally express positive attitudes towards SDM in clinical practice, although the level of support can vary according to clinical scenario, treatment decision and patient characteristics (Pollard et al., 2015).
Patient-centred communication has strong associations with the concept of therapeutic alliance, a term used to describe the relationship between mental health practitioners and their clients. While this term has often been confined to psychological interventions, the changing dynamics in HCP—patient interactions has led to the emergence of the idea of therapeutic relationships between HCPs and patients with physical illnesses. When HCPs listen to what patients have to say, ask questions and show sensitivity to their emotional concerns, the therapeutic alliance is reinforced. Evidence from a systematic review suggests that having a good therapeutic alliance between HCPs and patients can positively influence treatment outcomes through improvements in symptoms and general health status (Hall et al., 2010). While there were mixed findings concerning the impact of PCC on clinical outcomes, it was shown that this style of communication can facilitate patient satisfaction and self-management (Rathert et al., 2013). It has also been shown that tailoring communication for patients can improve medicine adherence (Linn et al., 2016). Furthermore, taking time for reciprocal discussion and alleviating patient anxiety has also been shown to promote greater referral for cardiovascular rehabilitation (Pourhabib et al., 2016). PCC also promotes knowledge, trust, loyalty and positive regard between HCPs and patients. The depth of the therapeutic relationship can also be strengthened through longitudinal care (i.e., seeing the same doctor over time). Ridd et al. (2009) suggest that having positive consultations with the same doctor over time can build depth to the HCP—patient relationship. However, longitudinal care alone is not enough to develop deeper HCP—patient relationships; it must also engender positive experiences with the care received. Unsurprisingly, when given the choice, patients are unlikely to choose the same doctor if the experience is negative.
Although the rhetoric around PCC can be used to signify patient participation and autonomy, it also implies greater personal responsibility for health. Therefore, caution is necessary when promoting discourses of patient-centred care to avoid disproportionate burdens of care and responsibility being placed on patients and families. A balance must be reached between patient empowerment and responsibility, while leaving HCPs accountable.
E-Health and M-Health
With the arrival of the World Wide Web, individuals were able to gain instant access to almost any information from any source at their fingertips. This amazing technical achievement created the e-health and m-health (mobile health) revolution. E-health is a general term referring to the application of digital technology (e.g., the internet, digital gaming, virtual reality and robotics) to health promotion, treatment and care, whereas m-health refers to the use of mobile and wireless applications (e.g., SMS, apps, wearable devices, remote sensing and use of social media, such as Facebook, Twitter and Instagram) to health-related purposes. The health care world is experiencing a paradigm shift like no other as a consequence of a virtual ’explosion’ in digital technology.
Initially, in the 1990s, internet access was slow and ’clunky’ because it required dial-up access. By the 2000s, many users had faster, broadband access that allowed continuous browsing, downloading, telephoning, videoconferencing, teaching and learning, public or private networking, commercial marketing, buying and selling, and gaming. The capabilities in health care referred to by West and Miller (2009) are expanding daily and, to an increasing extent, have global reach. By 30 June 2016, there were approximately 3.7 billion users from a population of 7.3 billion (50%). Although penetration varies by region and there is still a long way to go in Africa, there has been an astonishing 7,449% increase in internet penetration in this region alone from 2000 to 2016. This is projected to increase even further worldwide (Internet World Stats, 2016).
The internet is bringing a shift in the patient role from that of a passive recipient to an active consumer of information. In fact, many patients are far more than consumers; they are among the most innovative creators of information and critics of health care provision through their personal websites, social media, blogging, forums, noticeboards and chat rooms. There has never existed such a powerful and sophisticated technology to boost and foster patient empowerment and engagement in health care. The aphorism ’knowledge is power’ has never been more apt.
As internet access expands to an even broader spectrum of society, and a greater proportion of people globally become computer-literate, there is almost limitless potential for e-health and telemedicine. Like the bank clerks and bus conductors of Merrie Olde England, some doctors and nurses may soon be in fear for their jobs! Fortunately for them, in spite of health information being widely available online, HCPs generally are still seen as the main sources of reliable information by patients and service users. For example, Suziedelyte (2012) found that people who use e-health tend to consult HCPs more often, especially among those who have good health care coverage. Using data from the Health Information National Trends Survey (HINTS), Chung (2013) also found that men were more likely than women to have a conversation about information found on the internet with HCPs. Ironically, those who had trouble understanding or trusting online health information were found to be no more likely to ask questions or seek guidance from HCPs.
Online interventions are also being developed for health-related purposes. Hou et al. (2014) conducted a systematic review of internet-based health-related interventions in the USA published between January 2005 and December 2013. A total of 38 articles met assessment criteria. Targeted health behaviour interventions included: smoking (5), alcohol (4), weight loss (7), physical activity (7), diet (2), exercise and diet combined (5), HIV or sexual health (4), and chronic diseases (4). Interventions ranged from one session to 24 weeks and included strategies such as the use of web-based information, tailored feedback, weekly e-mails, goal setting and self-assessment. Social cognitive theory and the transtheoretical model were commonly used to develop these interventions. Most papers reported positive outcomes, except for smoking interventions. Recent studies have also shown how internet-based physical activity can improve self-efficacy to exercise (Hartman et al., 2015) and reduce the likelihood of indoor tanning use among women (Stepleton et al., 2015).
Innovative mobile apps are also being developed to support self-management of chronic conditions. For example, de la Vega et al. (2016) developed Fibroline, which is a mobile app with a self-administered cognitive behavioural treatment (CBT) to improve the quality of life of young people with fibromyalgia. It includes various modules and four task bars which allow the user to access resources (i.e., presentations, videos and audios), assessment (i.e., to record user’s sleep quality, pain intensity, mood, anxiety and fatigue), notes (i.e., to annotate treatment objectives) and reminders (i.e., including a ’to do’ list and reminders regarding medication and appointments). The app also includes a ’Progress’ section so that the user can monitor his/her development (i.e., levels of pain, sleep, anxiety and physical activity). Qualitative feedback was collected. It suggests that users liked the app and found it easy to use. The app is available to download on iTunes.
Examining the impact of m-health on chronic disease management, treatment adherence and patient outcomes, Hamine et al. (2015) found that of the 107 studies included in their systematic review, the short message service was the most commonly used m-health tool (40.2%). Acceptability and patient preferences were assessed in 57.9% of the studies and were found to be generally high. Of the 27 studies that used RCTs to assess adherence behaviours, 56% showed significant improvements. Furthermore, of the 41 RCTs that assessed disease-specific outcomes, only 39% reported significant improvements.
Figure 14.2 The Fibroline app
Source: de la Vega et al. (2016). Reproduced with permission
Online platforms are widely used to share health data. There is a wide variety of available platforms, including social media, Facebook, Twitter, wikis, forums, blogs, virtual communities and conferencing technology. In a qualitative study of an internet forum for patients with systemic lupus erythematosus, Mazzoni and Cicognani (2014) found that participants post messages online to start new relationships, seek information, receive emotional support and contribute to discussions. An example of such an online group is Realshare, which is an online support group for teenagers and young adults with cancer that was developed by Griffiths et al. (2015). It includes a forum whereby users can share general and regional information and interact with each other, and there is a page with details of charities and other support groups. The website was developed using a participatory action research approach and is available to teenagers and young adults with cancer in south-west England.
Participating in online health support groups can be empowering and can help to facilitate self-management. Chiu and Hsieh (2013) found that writing online blogs also enabled cancer patients to reconstruct their life story, express closure of life and their hope that they will be remembered after their death. Reading other patients’ stories also influenced their own experiences of living with cancer. Sometimes other patients influenced their perceptions of their prognosis more than their doctors did. Willis (2013) explored how patients with arthritis (n = 8,231) use online support groups to better manage their condition. By facilitating an exchange of information and experience, online groups can act as peer-led self-management programmes that can help to improve the health literacy and experience of members concerning arthritis. In a qualitative systematic review, Kingod et al. (2017) suggested that online peer-to-peer communities can help to strengthen both online and offline social ties (e.g., with physicians and health care providers) by enabling users to reflect and gain knowledge on illness-specific concerns. By facilitating discussion around positive experiences, online communities also foster social support and interactive discussion, which in turn helps to sustain active participation in the group (Wang and Willis, 2016).
The proliferation of health-related online blogs and discussion groups also provides new opportunities for health research. For example, blogs have been used to explore positive outcomes after burn injuries (see Garbett et al., 2016). Hall et al. (2016) used an online forum to analyse the construction of bodybuilders’ accounts of synthol use in an online forum. Discourse analysis of posts suggests that users draw upon a medical and pharmaceutical discourse to legitimate its use. They also build trust and rapport with new users through positive personal narratives, and thereby gain credibility as experts in this area. Similarly, Thompson et al. (2016) analysed an online discussion board used by teenagers and young adults with cancer. They found significant differences between discussions stemming from online and face-to-face support groups. Online users were more likely to use words related to friends and sex than those in face-to-face groups. They were also more likely to use the future tense and emotion words (e.g., anger and sadness) than in face-to-face groups. This implies that online platforms can encourage users to discuss future goals more and to share their thoughts and emotions more openly with others than when in a face-to-face context.
Although the internet can provide opportunities for health promotion, there are some occasions where maladaptive health behaviours can be encouraged. For example, the internet is full of posts relating to ’Fitspiration’, which usually comprises an image with a quote that motivates someone to exercise hard. Beopple et al. (2016) conducted a content analysis of fitspiration websites and found that the majority of the websites promoted excessive exercise and dietary restraint for appearance-motivated reasons. Simpson and Mazzeo (2016) also reported similar findings, whereby fitspiration messages on Pinterest encouraged idealized body image standards and included comparable amounts of fit praise (i.e., emphasis on a toned physique) and thin praise (i.e., emphasis on thinness). Holland and Tiggeman (2016) found that women who post fitspiration images on Instagram are more susceptible to maladaptive eating and exercise behaviours than those in a control group.
The e-health and m-health revolution has many profound implications for health care systems. For example, a systematic review showed that mobile phone messaging reminders can improve attendance in health care appointments (Gurol-Urganci et al., 2013). Health information can also be stored electronically, which has implications for how patient records are shared and stored. A systematic review by Rathert et al. (2017) showed that although the use of electronic health records can improve documentation and sharing of biomedical information, it may interfere with doctor—patient communication and the collection of psychosocial information. However, allowing patients to access electronic health records can potentially improve doctor—patient communication, patient empowerment, participation and self-care. HCPs need to acknowledge that patients generally want to be fully informed about their concerns, illnesses, treatments and prognosis, and this information, whether reliable or not, will be available, searched for and accessed by patients online. Patient informatics is becoming an increasingly useful addition to the training of HCPs by first, increasing their own awareness, knowledge and skills through access to the internet and second, learning how best to engage with the growing use of online health information by increasingly sophisticated service users. However, while the use of e-health and m-health interventions can promote positive health literacy outcomes in a variety of contexts, for a number of chronic conditions and among diverse populations (Jacobs et al., 2016) there is a risk of widening social and health inequalities if care is not taken. Since those with limited health literacy skills tend to have limited access to the internet, these groups may become even more marginalized as health and social care services become more digitized (Estacio et al., 2017).
The way messages are framed influences people’s intentions and willingness to change their behaviour (Rothman and Salovey, 1997). Tversky and Kahneman’s (1981) prospect theory proposed that people consider their ’prospects’ (i.e., potential gains and losses) when making decisions and therefore people’s preferences are sensitive to the framing of information. People tend to avoid risks when considering potential gains, but will be willing to take risks when considering potential losses. Gain- or loss-framed messages can be tailored to specific behaviours to maximize message effectiveness. Gain-framed messages give information about a health behaviour that emphasizes the benefits of taking action, whereas loss-framed messages give information that emphasizes the costs of failing to take action (see Figure 14.3).
Research into message framing has grown dramatically over recent years. Studies have been carried out to examine the effectiveness of health-message framing on improving cervical screening uptake (Adonis et al., 2016), reducing heavy drinking among college students (Kingsbury et al., 2015), promoting condom use (Garcia-Retamero and Cokely, 2011) and encouraging maternal influenza immunization (Frew et al., 2014). While findings from a meta-analytic review by Gallagher and Updegraff (2012) showed no significant differences in screening behaviours between loss-framed and gain-framed messages, gain-framed messages were more likely than loss-framed messages to encourage prevention behaviours such as smoking cessation and physical activity. Subsequently, Updegraff and Rothman (2013) identified two major approaches in message framing research: (1) exploring the perceived risks and uncertainties of the health behaviour; and (2) exploring the motivational orientation of the recipient.
Figure 14.3 Examples of loss-framed (A) and gain-framed (B) messages for smoking cessation
Source: Benjamin Toll, www.yalescientific.org/2011/04/smoking-cessation-a-gain-framed—counseling-approach
Both the perceived effectiveness of behaviour and perceived susceptibility to and severity of health risks can moderate the effects of message framing. For example, Hwang et al. (2012) examined how perceived effectiveness of sun safety behaviours and perceived susceptibility to skin cancer can moderate message-framing effects. Loss-framed messages were more effective when perceived effectiveness was low, whereas gain-framed messages were more effective when perceived effectiveness was high. Intention to use sunscreen and to wear long trousers to prevent skin cancer were also moderated by perceived susceptibility to skin cancer (i.e., loss-framed messages were more effective when perceived susceptibility was high). This was consistent with Bassett-Gunter et al.’s (2013) study, which found loss-framed messages to be more effective in promoting physical activity beliefs and intentions than gain-framed messages.
The motivational orientation of the recipient has also been found to moderate message-framing effects on dietary calcium intake (Gerend and Shepherd, 2013), sun protection behaviour (Hevey and Dolan, 2013) and fruit and vegetable consumption (Churchill and Pavey, 2013). Findings from van’t Riet et al. (2012) showed that personal relevance of the message can moderate the effect of message framing, i.e. loss-framed messages are only more persuasive than gain-framed message for low-relevance participants. Covey’s (2014) review found significant moderating effects of dispositional factors such as ambivalence, approach-avoidance motivation, regulatory focus, need for cognition and self-efficacy beliefs on the effectiveness of message framing.
Culturally targeted messages and perceived racism can also influence message-framing effects. Lucas et al. (2016) examined the effect of gain- versus loss-framed messages on African Americans’ receptivity to colorectal cancer screening and its association with perceived racism. African Americans (n = 132) and white Americans (n = 50) who were non-compliant with the recommended screening completed online modules on colorectal cancer which were either loss- or gain-framed. Half of the African-American sample was also exposed to a culturally targeted self-control message. Receptivity to the message and perceived racism were measured as outcomes. Findings suggest that white Americans were more receptive to a loss-framed message, whereas African Americans were more receptive to a gain-framed message. This difference was mediated by an increase in perceived racism. However, adding a culturally targeted prevention message appeared to mitigate the impact of a loss-framed message for the African-American participants.
Message-framing effects are influenced by cortical and optical variables. McCormick and Seta (2012) showed that loss-framed messages were more effective than gain-framed messages when these were presented in the right hemisphere. Using eye-tracking technology, O’Malley and Latimer-Cheung (2013) showed that the number of fixations, dwell time and recall for gain-framed messages were higher than loss- or neutral-framed advertisements. Furthermore, message recall was also positively associated with the number of fixations and dwell time for gain- and neutral-framed messages.
While message-framing research has focused on efforts to promote specific health behaviours, practitioners frequently face the challenge of encouraging people to perform a series of behaviours and sustain such actions. The majority of research on message framing has been quantitative in nature. There is a need to adopt new methods to progress message-framing research and practice (van’t Riet et al., 2016). It would also be useful for future research to explore people’s subjective experience of message framing using qualitative approaches.
What is Health Literacy?
There is no universal definition of health literacy. Early definitions focused on the application of literacy skills (e.g., reading and numeracy) to understand and use information to enable individuals to function in the health care setting (Kirsch et al., 1993). Later definitions expanded the concept to include social skills and the application of these skills to include the ability to access information to promote and maintain health (Nutbeam, 1998). More recent definitions incorporate ideas from health promotion and patient empowerment to include evaluation and communication skills to enable people to make informed decisions, increase control and take responsibility for health in various contexts (Kickbusch et al., 2005; Murray, 2007; Rootman and Gordon-El-Bihbety, 2008; Sorensen et al., 2012). For the purposes of this chapter, we draw upon the World Health Organization (2015b) definition: ’the personal characteristics and social resources needed for individuals and communities to access, understand, appraise and use information and services to make decisions about health’.
Health literacy may be categorized into three levels (Nutbeam, 2000):
· Functional health literacy refers to the basic reading, writing and numeracy skills that enable individuals to function effectively in health care. Activities associated with this level of health literacy often involve communication of health information to improve patient knowledge, e.g., leaflets, websites and other available media.
· Interactive health literacy refers to the development of personal skills to improve personal capacity to act independently based on knowledge. It focuses on improving motivation and self-confidence to act upon the advice received, i.e., self-efficacy. Examples include tailored health communication, community self-help and social support groups.
· Critical health literacy refers to the ability to critically evaluate and use information to actively participate in health care. Activities include cognitive and social skills development and capacity-building to influence the wider, social health determinants.
Health literacy skills are not limited to functional reading and numeracy skills. People need a skill-set that enables them to handle the complex nature of promoting and maintaining health. Table 14.1 lists the skills and tasks required for health promotion and management. Standardized tests measuring health literacy are beginning to acknowledge the dynamic and complex nature of health literacy. In a systematic review, Altin et al. (2014) found 17 articles detailing the development and validation of 17 health literacy standardized measures from 2009 to 2014. The majority of these instruments were based on a multi-dimensional construct of health literacy.
Why is Health Literacy Important?
The National Assessment of Adult Literacy in 2003 showed that 77 million people in the USA had basic or below-basic health literacy — more than one-third of the population. Europeans have similar levels of health illiteracy. The European Health Literacy Survey (HLS-EU) showed that 12% of the population had inadequate health literacy and 35% had problematic health literacy (Figure 14.4). These are worrying findings, considering that inadequate levels of health literacy can have damaging repercussions.
Protheroe et al. (2016) found that limited literacy is associated with demographic factors such as older age, lower educational level, lower income, perceived poor health and lack of access to the internet. A systematic review has also shown that older age is strongly associated with limited health literacy when it is measured as reading comprehension, reasoning and numeracy skills. By contrast, there is a weak association between older age and limited health literacy when it is measured as medical vocabulary. This implies that while functional health literacy skills can decline with age, vocabulary-based health literacy skills are more stable. There is limited evidence on the mediating role of cognitive function between ageing and functional health literacy (Kobayashi et al., 2016).
Figure 14.4 Health literacy (HL) levels in eight European nations
Source: HLS-EU Consortium (2012). Reproduced with permission
The associations between health literacy, access to health care and health outcomes are well established. Berkman et al. (2011) showed how poor health literacy was consistently associated with higher hospitalization rates, greater use of emergency care and poorer access to immunization and screening services. People with inadequate health literacy were less able to take medications appropriately and interpret labels. Among elderly persons, limited health literacy was associated with poorer overall health and higher mortality. Even after adjusting for SES and health status, people with limited health literacy make fewer visits to their doctors, prefer emergency care, and have more preventable hospital admissions than those with adequate literacy skills (Schumacher et al., 2013). Systematic reviews have also shown that adequate health literacy is associated with higher knowledge about salt and cardiac failure (Cajita et al., 2016), better reproductive health knowledge and adoption of health-related behaviours such as prenatal vitamin use and breastfeeding (Kilfoyle et al., 2016), and cervical screening uptake (Kim and Han, 2016).
Health literacy can also mediate self-rated health status across racial/ethnic and educational disparities (Mantwill et al., 2015). In a qualitative study, Vamos et al. (2016) explored narratives of women living in a Hispanic migrant farmworker community following abnormal pap test results. Using health literacy as a conceptual framework, the research explored how women obtained information about getting a pap test, how they understood their results, how they felt and talked about it, how they received social support, and what they did afterwards. The narratives highlighted the diversity of patient reactions and experiences.
Ochieng (2013) examined the experiences of black African migrant families in accessing health promotion services using self-administered questionnaires in Arabic, English, French and Swahili. Limited literacy and proficiency in English were perceived as the main barriers to accessing services among migrant families. Because of communication difficulties with HCPs, participants felt reluctant to seek health promotion information and support in the first place. Blending health literacy skills development with English for Speakers of Other Languages (ESOL) curricula can be considered to alleviate this issue (Chen et al., 2015).
Health literacy can also influence people’s willingness to participate in shared decision-making. Aboumatar et al. (2013) recruited 41 primary care physicians and 275 of their patients in an RCT that aimed to improve patient adherence to hypertension treatments. The physicians were allocated to either minimal intervention or communication skills training, while patients received a minimal, control intervention or a pre-visit coaching session. Patients with low health literacy skills were less likely to experience shared decision-making than those with adequate health literacy. Patients with limited health literacy were also less likely to ask questions and were less able to respond to patient-centred communication.
These latter findings are consistent with a review by McCaffery et al. (2013), which showed that limited health literacy was not only linked with poorer health knowledge, but also associated with less desire for involvement, less question-asking and less patient-centred communication with their doctors. When patients with limited health literacy did engage in health decisions, they were more likely to report higher decisional uncertainty and regret. While patient decision aids can help, this review found that very few studies had explicitly acknowledged the needs of patients with limited health literacy. Interventions on shared decision-making must consider health literacy as a potential limiting influence in health communication.
Strategies for Improving Health Communication
In spite of the increasing availability and sophistication of ICT, the weak link in any communication system remains the human being. There are diverse ways to improve health communication, which is hardly ever perfect, but effective communication is not ’rocket science’ either. Unless human HCPs are replaced by robots in some future universe (which seems to us highly unlikely), people will always play a crucial role in the delivery of health care. In a study in two clinics in Dallas, Texas, Gutierrez et al. (2014) observed that, regardless of health literacy, patients relied on their HCPs to obtain health information.
HCPs everywhere need to take into account the messenger, the receiver, the message and the context. Interventions that aim to promote effective health communication must consider the best ways to: (1) improve HCP communication skills; (2) promote individual and community capabilities; and (3) simplify and clarify all health care information.
Improving HCP Communication Skills
HCPs and patients often have very different perceptions of how well an episode of HCP—patient communication actually went. Probably this is true of the majority of human beings. Dickens et al. (2013) found that nurses tend to overestimate patients’ health literacy skills. HCPs also have a tendency to overestimate the clarity of their own oral communication skills. Similarly, in a study comparing self-reported and actual use of clear verbal communication among medical residents, Howard et al. (2013) found that although the majority of the medical residents reported using plain language when communicating with patients (88%), on average, while completing a standardized low literacy patient encounter, they used two jargon terms per minute. Similarly, while 48% reported using the teach-back technique (i.e., confirming that the delivered information was understood by asking patients to repeat or demonstrate what they had been told), only 22% used it in the standardized encounter. They failed to translate their training into everyday practice.
To enable patients to make informed choices, HCPs need to take steps to communicate in a manner that patients can understand. Protheroe and Rowlands (2013) argue that HCPs need to adapt their communication techniques to take into account the patients’ different levels of health literacy. To promote effective interactions with patients, HCPs need to improve their communication skills and be aware of the varying levels of health literacy that exists across patients. It has been shown that communication training for clinicians can improve patient satisfaction, especially in reducing pain and disability in primary care and rehabilitation (Oliveira et al., 2015). The following strategies can be considered to improve communication:
· Slow down. Spend some time talking with patients using plain language. In a study by Sadeghi et al. (2013), it was found that time constraints and use of medical jargon are the main barriers that impede HCP—patient communication. It is important for HCPs to speak slowly and use language that is easy to understand.
· Show or draw pictures. Visual aids can help to enhance understanding and recall. Simple line drawings and cartoons will suffice. As an example, Mohan et al. (2013) have shown how illustrated medication instructions can be used to improve medication management among Latino patients with diabetes in the USA.
· Limit the amount of information provided and repeat it. This is particularly important for patients with limited literacy skills since health literacy can significantly influence people’s ability to remember verbal instructions and to recall information (Miller et al., 2013). Information is easier to understand and to remember when given in small doses. Repeating and highlighting key tasks can help enhance recall.
· Create a shame-free environment. Some patients may feel embarrassed to share their literacy difficulties because of stigma (see Box 14.1). It is important for HCPs to promote a culture of helpfulness in their everyday practice by encouraging patients to ask questions. The Ask Me 3TM programme can be a useful guide for patients and HCPs. In this programme, patients are encouraged to ask HCPs three questions:
1. What is my problem?
2. What do I need to do?
3. Why is it important for me to do this?
There is sufficient evidence to support the effectiveness of communication skills training courses to improve communication styles and attitudes among HCPs (Barth and Lannen, 2011). In particular, programmes that last for at least a day, are learner-centred, focus on practising skills, and include activities such as role-play, feedback and small group discussions, are shown to be most effective for training communication skills among GPs (Berkhof et al., 2011).
Box 14.1 Key Study: Stigma of Low Literacy and Spoken Interactions between Patients and HCPs
This qualitative study explored how limited literacy could influence access to health care, self-management and health outcomes.
Participants were recruited from a community-based adult learning centre in Dundee, Scotland. Participants (n = 29) were working-age adults who had English as a first language and had sought support for literacy difficulties. Using interviews, researchers explored personal experiences of literacy, health care (including self-care) and self-reported health outcomes. The interviews were supplemented with focus group discussions to further explore ideas about how health services could be improved to support people with literacy difficulties. The interviews and focus groups were transcribed and analysed using framework analysis.
Participants explained that limited literacy skills impaired their interactions with HCPs. These difficulties were expressed in terms of understanding written information, complex explanations and instructions that subsequently ripple onto their broader health care experiences and ability to self-care. For some, interactions with HCPs were so bad that they described these scenarios as all ’gobbledygook’ to them. Some participants also felt that HCPs did not make any effort to help them to understand what was being said. This is reflected in the quote below:
… and he [hospital consultant] was ’blah blah blah’ and he knew fine I didn’t have the foggiest idea what he was talking about. (Harry, male, 40s, quoted in Easton et al., 2013: 6)
Findings also suggest that some of the communication difficulties experienced by patients were further exacerbated by the stigma associated with limited literacy. The participants’ narratives revealed how they had tried to conceal their limited literacy from their HCPs and in other social contexts. Some participants felt the need to hide their literacy difficulties because of the negative experiences they had had in the past. In fear of revealing their limited literacy skills, some participants would refrain from engaging in the process, as reflected in the quote below:
I couldn’t spell it. I just went, ’You know what, I’m going to have to go. I’m not feeling very good. I’ll come back, I will come back’ and I grabbed it [the form] and ran out. (Barbara, female, 50s, quoted in Easton et al., 2013: 7)
Limited literacy can seriously impair interactions between HCPs and their patients. However, it is not only the difficulties associated with reading and understanding information that can interfere with the process. The stigma associated with limited literacy often exacerbates problems when patients try to hide the difficulties they experience to avoid embarrassment. Complex processes and HCP communication styles that are littered with medical jargon often can drive some patients to avoid these interactions to prevent exposing their literacy difficulties in public. It is important for HCPs to recognize the needs of people with limited literacy skills by communicating effectively (without jargon) and by creating a shame-free and non-judgemental environment.
Source: Easton et al. (2013)
Promoting Individual and Community Capabilities
Health promotion requires the development of skills that are necessary to enable individuals and communities to take control over the determinants of health. Chervin et al. (2012) worked in partnership with adult education centres to incorporate health literacy into the curriculum. Six adult education centres that served ethnic minority, immigrant and low-income learners in a small north-eastern state in the USA received a grant to deliver health literacy sessions as part of their curriculum. Quantitative and qualitative methods were used to assess its processes and outcomes. Health literacy instruction was found to have a positive impact on the learners’ knowledge and understanding of health issues, the health care system, medical terminology and patient rights and responsibilities. Furthermore, the centres reported that learners were able to apply the health literacy skills they had developed in practice, such as healthier eating, scheduling doctor’s appointments, communicating effectively with HCPs and following medical instructions. Levels of self-efficacy had also increased. Towards the end of the project, nearly three-quarters of the centres included health literacy sessions in the curriculum, with almost half of the teachers continuing to attend professional development activities for health literacy. Over the course of the project, each centre also developed partnerships with health care providers that established the infrastructure for further knowledge and opportunities for teachers and learners.
Health literacy interventions, however, do not need to be isolated within the education setting. Considering that difficulties associated with limited health literacy are often exacerbated by social, cultural and historical contexts, it is important that interventions consider alternative environments to ensure that these are appropriate and relevant to the target audience.
A word of caution, however — promoting health literacy does not necessarily lead to patient empowerment. As Schulz and Nakamoto (2013) argue, although health literacy and empowerment may be related, they are distinct concepts, and one may not necessarily lead to the other. Presuming this to be the case can lead to deleterious consequences. As shown in Figure 14.5, high levels of health literacy without improving patient empowerment can lead patients to become overly dependent on HCPs. On the other hand, improving patient empowerment without corresponding improvements in health literacy potentially can lead to dangerous self-management among patients. When aiming to help patients become effective self-managers of health, interventions need to encompass methods for improving both health literacy and empowerment. Only these two in combination can ensure patients have the knowledge, skills and confidence to use appropriate resources effectively to promote and maintain their health.
One way to improve health literacy, build capacity and promote empowerment is by actively engaging participants themselves in the intervention process. Participatory action research (PAR) (Chapters 7 and 17) is one approach that can help to develop skills and raise critical consciousness at the same time.
Simplifying and Clarifying Health Information and the Wider Health Care System
Using text-based materials containing lengthy, complex information can be difficult for people with limited literacy skills. It is important that information materials are clear and easy to understand. However, simplifying health information is not just about improving its readability by using shorter words. Designing effective health information needs to consider the materials’ cultural appropriateness, relevance and context to narrow the gap between the health message, the messenger and its intended recipients (Zarcadoolas, 2011). It is also important to consider what information patients actually need, based on their goals and circumstances. For example, Hingle et al. (2013) piloted text messages for young people to influence their knowledge, attitudes and behaviour towards nutrition and physical activity. Based within youth programmes in Arizona, nine focus groups, four classroom discussions and an eight-week pilot study were conducted over a 12-month period to engage young people in discussing the content, format, origin and delivery of the text messages. By engaging young people in the process, more than 300 text messages that were relevant, acceptable and suitable to this target group were developed and tested.
Figure 14.5 Health literacy, empowerment and patient behaviour
Source: Schulz and Nakamoto (2013)
Kennedy et al. (2014) evaluated a series of self-management guidebooks using cartoons for people with inflammatory bowel disease, irritable bowel syndrome, diabetes, chronic obstructive pulmonary disease and chronic kidney disease. The content was informed by qualitative research to obtain lay views and experiences. In general, the cartoons depicted common patient situations and dilemmas, decision-making choices and uncertainties associated with these conditions. After the guidebooks had been piloted, in-depth interviews and ’think-aloud’ methods were used to evaluate them. The cartoons invoked amusement, recognition and reflection and helped provide clarity and understanding that otherwise may have been impossible.
Creative methods can also be used to improve health communication. For example, Nambiar et al. (2011) examined how radio- and theatre-based educational programmes can improve knowledge, attitudes and behaviour among antiretroviral therapy patients in India. Exposure to these programmes was associated with higher HIV-related knowledge, lower levels of stigma, consistent condom use, better doctor—patient communication, peer-advice giving and HIV-related advocacy.
Storybooks can also be used to communicate complex health information. Scott et al. (2012) explored how storybooks can support the parents of children who are going through treatment of croup. The parents received a set of three storybooks, each depicting different severity levels of croup (mild, moderate and severe). Findings from the evaluation suggest that reading the storybooks helped the parents to gain a better understanding of progressions and treatment of croup and alleviate their anxiety by reducing the uncertainty concerning their child’s condition. The parents also felt reassured and empowered, and gained a sense of normalization of their experiences.
Contemporary health care systems often rely on overly complex processes that can be tedious to operate even for those with high levels of health literacy. There is often a mismatch between the demands of health care and the skills of patients, thus highlighting the need to simplify these systems to enable both patients and practitioners to operate effectively within this environment (Rudd, 2013). For example, Herndon et al. (2011) examined the health literacy level of patients in an emergency department (ED) and the readability of ED information materials. They found that 40% of patients had health literacy skills at Grade 8 or below, while, on average, ED materials had readability levels suitable for or above Grade 9. This meant that a substantial proportion of ED materials were too complex for its target audience.
Research has shown that publicly available health information may not necessarily suit people’s existing knowledge and health literacy skills (Protheroe et al., 2015; Damman et al., 2016). It is important that information pamphlets are a clear and appropriate match to the needs and skills of end-users. In England, for example, the Information Standard is used to ensure that the quality of health and social care information is clear, accurate, impartial, evidence-based and up to date. The Information Standard is an independent certification programme commissioned by NHS England and run by Capita on their behalf. Any organization producing evidence-based health and social care information for the public across England can apply for a mark. Organizations that pass this rigorous assessment are awarded the Information Standard Quality Mark.
In addition to reducing complexity in the health care system, there is also a need to consider the wider social and environmental conditions that influence health. Considering that health literacy is about having the capability and skills to implement informed choices to promote health, it is important that the environment is supportive of the decisions made by individuals to enhance healthy living. One way forward is the WHO Healthy Cities Movement, which aims to promote healthy environments. This programme is a long-term international initiative that aims to create health-supportive environments through comprehensive local strategies for health protection and sustainable development. It capitalizes on community participation, inter-sectoral partnerships and participant equity to ensure that health is placed high on the agenda of key decision-makers.
Individual HCPs — health psychologists included — may be small cogs in a huge wheel, but, without effective cogs, the huge wheel quickly grinds to a halt. Improving communication skills is by far the best and most cost-efficient way to ’oil the cogs’, keeping this marvellous ’wheel’ of the health care system moving in a positive direction — providing patients with the best possible care.
1. How to use health-message framing to promote the initiation and maintenance of health behaviours, including qualitative explorations of people’s subjective experiences of behaviour change.
2. How health literacy can be incorporated into the design of patient decision aids to foster better shared decision-making.
3. More participatory action research projects to develop interventions to narrow social inequities in health information.
4. Robust evaluation of processes and outcomes to examine its effectiveness and impact on health service users’ and providers’ experiences.
5. Exploring how the WHO Healthy Cities Movement is succeeding in promoting health-sustaining environments.
1. Health communication refers to all interpersonal, organizational or mass communication that concerns health. It can occur in various contexts, settings and channels, and deliver a variety of messages for a variety of reasons.
2. Shannon and Weaver’s telephone model of communication considers six key components to communication: (1) source, (2) transmitter, (3) channel, (4) receiver, (5) destination and (6) noise. This is a basic descriptive model that serves a didactic function and little more.
3. Good communication between HCPs and patients is essential to health promotion, disease prevention and treatment, and serves as the foundation for an effective HCP—patient partnership.
4. Message framing can be used to influence people’s motivation to undertake specific health behaviours.
5. E-health and m-health are growing rapidly as internet access widens. The role of the patient is shifting from a ’passive consumer’ to an ’active consumer of information’ who is able to access an almost unlimited amount of health information and support, free at the point of delivery, online.
6. Health literacy refers to the capacity to access, understand, appraise and apply health information and services to make appropriate health decisions to promote and maintain health. It has three general levels: (1) functional, (2) interactive and (3) critical.
7. There are a number of skills concerning health literacy that are relevant to health promotion. These skills include reading, writing, numeracy, analysis, decision-making, navigation, negotiation, awareness and advocacy.
8. Low literacy has been associated with poor health outcomes, including knowledge, intermediate disease markers, measures of morbidity, general health status and use of health resources. Patients with low literacy may also be reluctant to seek assistance due to the stigma and shame attached to it.
9. HCPs need to be aware of health literacy levels when communicating information to ensure effective interactions with patients.
10. Building HCPs’ and patients’ skills, simplifying the health care system and promoting health-sustaining environments are useful ways to improve health communication.