Defining health literacy and its importance for effective communication

Authors

Veronica Lambert, Lecturer, School of nursing and human sciences, Dublin City University, Ireland.
Deborah Keogh, At the time of writing, fourth-year undergraduate nursing student, Dublin City University, Ireland.

Short description

Explore the concept of health literacy, and identify the link between poor health literacy and health outcomes. This module is suitable for nurses working in child health.

Detailed description

This learning module explores the concept of health literacy, an often hidden barrier to effective healthcare communication. The authors define the components of health literacy, as well as describing the extent and implications of limited health literacy for parents/caregivers and their children. The module also identifies the link between poor health literacy and health outcomes and outlines a framework for adolescent health literacy.

Module overview

This is the first of two modules exploring the concept of health literacy, an often hidden barrier to effective healthcare communication. The authors define the components of health literacy, as well as describe the extent and implications of limited health literacy for parents and caregivers, and their children. The module also identifies the link between poor health literacy and health outcomes, and outlines a framework for adolescent health literacy.

Keywords

adolescents, child health, communication, health literacy, parents, patient education, patient information

Aims

This module aims to provide readers with an overview of the concept of health literacy.

Intended learning outcomes

After reading this module and completing the time out activities you should be able to:

• Define what is meant by health literacy.
• Outline the key components of health literacy.
• Describe the extent of limited health literacy.
• Evaluate the potential impact of limited health literacy on health outcomes.

Introduction

Poor health literacy is a fundamental, yet hidden, barrier to effective healthcare communication for children, parents and carers. Literacy encompasses not only reading and writing skills, but also listening, speaking, numeracy and the use of everyday technology to communicate, handle information, explore new opportunities and initiate change.

Health literacy signifies literacy in the healthcare environment: being able to understand and take action from reading and/or hearing about health-related information (Sanders et al 2004). Parent, carer and child understanding of health information can significantly affect the ability to follow medical guidance or make the changes necessary to improve their health.

Health information and healthcare settings can be particularly difficult for parents or carers and children with literacy problems to navigate. However, being literate is not synonymous with being health literate. Regardless of a person’s literacy level, health literacy can be a challenge for anyone, because healthcare environments often require more demanding literacy skills than necessary in daily life (Ishikawa and Yano 2008). Although elementary reading ability and numerical competence are considered central to health literacy, such skills may be inadequate for parents/carers and children, as they try to grasp and react to alien terminology and concepts in strange healthcare environments (Protheroe et al 2009).

Macabasco-O’Connell and Fry-Bowers (2011) explored registered staff nurses (n=36), advanced nurse practitioners (n=25), clinical nurse specialists (n=8) and clinical nurse managers’ (n=7) knowledge and perceptions of the impact of limited health literacy on patients, nursing practice and the health system. They found that 20% of respondents (n=15) had never heard of health literacy, only 30% (n=22) asked patients if they had difficulty reading health information and 56% (n=43) viewed health literacy as low priority compared with other patient problems.

Learning Points

1. Poor health literacy is a fundamental, yet hidden, barrier to effective healthcare communication for children, parents and carers. Literacy encompasses not only reading and writing skills, but listening, speaking, numeracy and the use of everyday technology to communicate, handle information, explore new opportunities and initiate change.
2. Health literacy signifies literacy in the healthcare environment: being able to understand and take action from reading and/or hearing about health-related information.
3. Regardless of a person’s literacy level, health literacy can be a challenge for anyone, because healthcare environments often require more demanding literacy skills than necessary in daily life.
4. Parent or carer and child understanding of health information can significantly affect the ability to follow medical guidance or make the changes necessary to improve their health.

Defining health literacy

Definition

Health literacy is the extent to which people can access, process, understand, use and communicate health-related information (oral, print and numerical), skills and services (Institute of Medicine of the National Academies 2004, Berkman et al 2010).

This access to health-related information allows parent or carers and children to make informed health decisions and take action to:

• Prevent ill health.
• Promote, improve and sustain health.
• Enhance their quality of life over the life course (Berkman et al 2010, Sørensen et al 2012).

Health literacy is a complex set of cognitive, social and navigational skills that encompass language proficiency, reading ability, numerical literacy and the capability to interact with healthcare employees, complete complicated documents, and comprehend risk and probability (Mattox 2010). It encompasses the ability to understand that actions taken in youth can affect health in later life (Brown et al 2007).

Components

At its simplest level, health literacy has three components (Box 1) (Mackie 2012):

• Literacy.
• Comprehension.
• Participation.

These portray the spectrum of skills covered by the concept of health literacy, which range from reading and numeracy to critical thinking, problem solving, decision making, information seeking and communication, along with the social, personal and cognitive abilities needed to function in the healthcare system (Mancuso 2009).

Box 1. Components of health literacy

• Literacy: capacity to read, write, communicate and solve problems; enables individuals to gain necessary knowledge of health and health systems.
• Comprehension: capacity to understand how health and healthcare services are structured and operate to meet healthcare needs and how these services can be accessed.
• Participation: capacity to follow a course of treatment or self-management that will improve health/wellbeing, or change behaviour to prevent disease from starting or progressing.

(Mackie 2012)

Risks associated with limited health literacy

• Parents and children with underdeveloped verbal and written communication skills will not only have less contact with health information, but will hold fewer competencies to fully understand and take action on the information they receive (Protheroe et al2009).
• As more health care is delivered in outpatient settings, parents and children need to be able to recognise and report symptoms, self-manage side effects and take medications on time.
• Health literacy can help to improve quality of life and lead to better health outcomes. Therefore parents and children with limited health literacy, defined as inability to read and understand medical information and to act on it, are at risk of worse health outcomes (Sanders et al 2004, Heerman et al 2012, Heinrich 2012).

Learning Points

1. Health literacy is the extent to which people can access, process, understand, use and communicate health-related information and services.
2. Health literacy can help a person make informed health decisions to prevent ill health and promote health status. Health literacy can help improve quality of life and lead to better health outcomes.
3. Health literacy can also be described as a complex set of cognitive, social and navigational skills that encompass language proficiency, reading ability, numerical literacy and the capability to interact with healthcare employees, complete complicated documents, and comprehend risk and probability.
4. At its simplest level, health literacy has three components: literacy, comprehension and participation.
5. The parents and children with limited health literacy, defined as inability to read and understand medical information and to act on it, are at risk of worse health outcomes.

Extent of problem

Low health literacy in Europe is not a minority problem, with nearly every second person (47.6%) aged over 15 years being affected (Maastricht University 2012). Of this group:

• 12.4% experience ‘inadequate’ health literacy, defined as achieving a threshold score of 25 points or less on a scale that rates perceived difficulty in performing a given health-related task.
• 35.2% of individuals experience ‘problematic’ health literacy, defined as achieving a score of more than 25-33 points on the same scale as above.

Scores of more than 33-42 and more than 42-50 points represent sufficient and excellent health literacy respectively.

In the UK, 11.4% of people aged 18-90 years have marginal or inadequate health literacy (von Wagner et al 2007). With a core value of citizen empowerment, support for programmes that boost health literacy among all age groups is an explicit priority action of the European Commission’s health strategy for 2008/13 (Commission of the European Communities 2007).

While limited health literacy can affect people of all ages, races, incomes and education levels (Ratzan 2011), some population groups have been identified as being at greater risk. For example, those who are older, female, of black/Hispanic ethnicity, unemployed and/or of lower social status (Porr et al 2006, Yin et al 2007a).

While children are not explicitly categorised as a population group at risk of limited health literacy, they are distinct from adults and therefore require specific attention, for example, because of developmental changes and because health literacy is a dyadic function – that is between two people, the child and parent (Abrams et al 2009). Understanding the ways in which children think and problem solve will help nurses select suitable methods to assist them to attain and employ health knowledge in their daily lives (Brouse and Chow 2009).

Developmental issues

The point in their lives and the way in which children accomplish health literacy are key factors to consider when discussing the subject in relation to child health. Developmental psychology provides valuable information about children’s cognitive abilities, which can be applied to understand their conceptions of health and potential health literacy skills (Borzekowski 2009).

Piaget’s stages of cognitive development

For instance, Piaget’s first stage of cognitive development – sensorimotor (birth to two years) – states that children learn about the world through sensory actions, such as putting objects in their mouths, and they associate illness with not feeling well and something that evokes fear. In this stage, children rely on their parents to obtain health care. Table 1 shows Piaget’s other stages of cognitive development: pre-operational, concrete-operational and formal-operational stages, alongside cognitive milestones, concepts of health and potential health literacy skill.

Table 1. Piaget’s stages of cognitive development, concept of health and health literacy skills in children

Stage	Pre-operational stage (between two and seven years)	Concrete-operational stage (between seven and 11 years)	Formal-operational stage (11-plus years)
Cognitive milestones	Symbolic thought. Learn through use of language. Words represent objects, actions and thoughts. Egocentric – see things only from own point of view.	Use objects or toys to represent everyday items. Learn to apply general rules in standard way. True mental actions and logical thought begins.	New stage of logical thinking emerges. Can think abstractly. Capable of complex thinking. Can think of outcomes and hypothesise best solution.
Concept of health	Capable of talking about illness. Define illness only when told they are ill. Believe illness caused by something they do or fail to do. Explain illness with physical appearance/ observable actions. Believe can recover from illness by adhering to strict ‘rules’ such as staying in bed.	Associate health with absence of illness. Attribute illness to germs. Believe illness prevented by avoiding germs. Associate illness with behaviours or consequences. Believe in recovery from illness by taking care of self and doing whatever the doctor says such as taking medicine.	Define health based on health-related behaviours. Define illness in abstract terms with an emphasis on an internal feeling of unwellness. Understand there are many inter-related causes of illness. Can hypothesise that certain environments might put someone at risk for illness. Understand the body’s response to medication is critical in recovering from illness.
Health literacy skills	Name bodyparts. Talk with health professional. Communicate and locate pain. If given assistance, a school-aged child with diabetes might learn to monitor his or her own blood sugar levels.	Execute preventive care (such as brush teeth). Provide history of illness. Assent to treatment. Self-administer medications (such as inhaler). Read and understand health information on a website and incorporate into their daily activities.	Read or use an asthma action plan. Provide past medical history (including family history). Self-administer medications. Access and understand health information from various sources such as school, community, web. Read a label on an over-the-counter medication, consider his or her age/weight and measure correct dosage.
(Myant and Williams 2005, Borzekowski 2009, Sanders et al 2009)

Piaget’s stages of cognitive development illustrate how children’s thinking capacity changes and becomes more complex over time as the brain matures. Accordingly, child health literacy skills will change and develop over time as children’s thought processes advance and they build on and use their knowledge and skills to become empowered and more active in their health care (Myant and Williams 2005). However, care should be taken to avoid imposing age limitations on children’s thinking and reasoning abilities. This could result in assuming that at certain ages, because of their immaturity, children would be incapable of participating in discussions about their health and/or of fully understanding information. Yet there is evidence to suggest that children’s comprehension may not be as limited as Piaget suggests (Myant and Williams 2005). An age-limited approach could potentially affect the level of involvement and amount of information disclosed to children about their own health and/or illness by their parents and healthcare providers.

Vygotsky’s zone of proximal development

Vygotsky’s (1978) theory takes cognisance of broader societal and cultural factors as active forces in guiding the development of children’s higher cognitive processes. Children gain new knowledge and competencies through social dialogue and practical activities with others, that is, adults and peers. This perspective emphasises the need for health professionals and parents not to regard the child as incompetent, but to work alongside (scaffold) the child within his or her zone of proximal development(Figure 1) – that is, the difference between what a child can do with assistance and what he or she would achieve independently – to enhance his or her understanding and competence (Vygotsky 1978).

Figure 1. Vygotsky’s zone of proximal development

Therefore, rather than assuming an inert role when learning about health, children should be encouraged to assume an active and interactive role with others to promote better understanding and enable even young children to acquire crucial skills on a path towards health literacy (Borzekowski 2009).

Learning Points

1. Low health literacy in Europe is not a minority problem, with nearly every second person (47.6%) aged over 15 years affected. Limited health literacy can affect people of all ages, races, incomes and education levels, but some population groups have been identified as being at greater risk.
2. Developmental psychology provides valuable information about children’s cognitive abilities, which can be applied to help understand their conceptions of health and potential health literacy skills.
3. Care should be taken to avoid imposing age limitations on children’s thinking and reasoning abilities as this could result in assuming that at certain ages, because of their immaturity, children would be incapable of participating in discussions about their health and/or of fully understanding information.
4. Children gain new knowledge and competencies through social dialogue and practical activities with others, that is, adults and peers.
5. Vygotsky’s (1978) theory takes cognisance of broader societal and cultural factors as active forces in guiding the development of children’s higher cognitive processes. The theory emphasises the need for health professionals and parents not to regard the child as incompetent, but to work alongside the child within his or her zone of proximal development.
6. Children should be encouraged to assume an active and interactive role with others to promote better understanding and enable even young children to acquire crucial skills on a path towards health literacy.

Social position

Another factor to consider when discussing child health literacy is how children, and childhood, are thought about and understood. Arguably, an individual adult’s own view of childhood will affect their perspective. Lambert et al (2011) argued that the fluctuating change in philosophy encircling the social construction of childhood may have an important influence on children’s participatory role in the healthcare communication process, including the disclosure of health information to children.

Similar contentions can be applied to the environment of child health literacy. For instance, to what extent are children viewed as juvenile, undeveloped individuals who need adult protection as opposed to expert contributing social representatives in their own right (Kehily and Montgomery 2003)? In response to shifting cultural politics, such as changes in laws, policies, discourses and social practices through which childhood is defined, the character of childhood changes over time (James and James 2012). As a result, the sociocultural facets of children’s health literacy will change depending on their levels of endorsed independence, responsibility and autonomy.

In India, for example, parents of children with cancer are reluctant to tell their offspring about the illness and do not include them in discussions about treatment or palliation (Seth 2010). This view conflicts with modern-day perspectives advocating listening to children’s voices, seeing them as ‘being’ in their own right. And yet there are many social and cultural beliefs that attempt to justify reluctance to give children a voice based on age, vulnerability and dependency (Lloyd-Smith and Tarr 2000).

Many chronically ill adolescents fail to benefit from opportunities to learn appropriate developmental healthcare competencies because they adopt passive roles and rely on their parents to assume responsibility. In such cases, adolescents are unable to practise vital skills for achieving independence in self-managing their chronic healthcare needs (Betz 2000).

There appears to be a long-standing dichotomy of conflict (Lambert et al 2011). On the one hand, children are objects of protection, with adults inclined to shield them by surrounding them with care, while on the other, they are supported to perform as autonomous beings with their own rights. These contrasting perspectives pose challenges to healthcare providers and parents, who must guide children to be actively involved in learning about and managing their health needs, while respecting their cultural beliefs and wishes.

Learning Points

1. The fluctuating change in philosophy encircling the social construction of childhood may have an important influence on children’s participatory role in the healthcare communication process, including the disclosure of health information to children.
2. In response to shifting cultural politics, such as changes in laws, policies, discourses and social practices through which childhood is defined, the character of childhood changes over time.
3. There appears to be a long-standing dichotomy of conflict as, on the one hand, children are objects of protection, with adults inclined to shield them by surrounding them with care, while on the other, they are supported to perform as autonomous beings with their own rights.

Health literacy and outcomes

Studies (Agre et al 2006, Zarcadoolas et al 2006, Parker and Ratzan 2010, Squellati 2010) with adult populations have shown correlations between inadequate health literacy and poor health outcomes such as:

• Difficulty recognising and reporting symptoms.
• Inability to self-administer medications correctly and self-manage medication side effects.
• Inability to understand and concord with treatment plans.
• Inappropriate use of healthcare services with associated unnecessary healthcare costs and greater mortality risks.

While advances to improve health literacy have so far been aimed largely at adults, low health literacy is also problematic for children and parents (Heerman et al 2012). For example, although vaccination and prompt discovery can avert or curtail many diseases, illnesses and conditions (White et al 2008), globally almost nine million young children aged under five years die every year from preventable or treatable causes (Ratzan 2011).

Child health literacy is complicated by the fact that it must be considered alongside parental health literacy (Abrams et al 2009). For instance, children’s health outcomes depend on (Sanders et al 2009):

• Parents’ ability to understand a plethora of preventive care recommendations for younger aged children.
• Older children and adolescents’ expected ability to understand increasingly complex information to make their own healthcare decisions.

Parental health literacy

Children’s health outcomes are affected by their reliance on their parents’ health literacy to understand their child’s condition (Otal et al 2012) and to meet their healthcare needs (Pati et al 2011). Adults with limited literacy face significant barriers to understanding and implementing basic tasks, such as providing appropriate nutrition, safety and medication (Kumar et al 2010). The prevalence of low health literacy among young adults, parents or carers varies in the range of 10-40% (Sanders et al 2009).

While no UK data were sourced, a subgroup analysis of US data from a National Assessment of Adult Literacy study (Yin et al 2009) revealed that 28.7% of parents or carers had below basic or basic health literacy skills. To date, studies have centred on how parental health literacy affects managing childhood chronic diseases such as asthma and diabetes, parental awareness of healthy weight ranges in children and their ability to measure and administer medications accurately.

Sanders et al (2009) reported that adults with low literacy are 1.2-4.0 times more likely to display undesirable parenting, errors in child medication dosage, reduced uptake of preventive care services and have a greater risk of poor health outcomes for children with chronic illness. For example, children of parents with low literacy have more severe asthma symptoms, visit the emergency department more frequently, have more hospital admissions, miss more days of school, have lower interactions with health professionals, lower asthma knowledge and lower treatment expectations (DeWalt et al 2007, Shone et al 2009).

One study to assess whether low caregiver health literacy was associated with the use of non-standardised medication dosing instruments and a lack of knowledge that paediatric medication dosing is based on weight found that 67.8% (n=198) of parents were not aware that dosages were calculated according to a child’s weight (Yin et al 2007b); the study involved parents of children aged under eight who presented with non-urgent concerns to an emergency department at one New York city public hospital. This lack of awareness is more likely to result in inaccurate medication dosage (Li et al 2000).

Other studies have shown that parents or carers of children aged under 12 years presenting to a US paediatric emergency department for non-urgent concerns and of children aged under two years recruited from general paediatric clinics have difficulty determining correct medication doses and have greater risk of misinterpreting instruction labels of over-the-counter (OTC) medication (Simon and Weinkle 1997, Lokker et al 2009).

In Simon and Weinkle’s (1997) study, parents completed a questionnaire about OTC medication use in the previous two months and responded to a mock scenario to calculate medication dosage for a child with a febrile illness. Only 30% of caregivers determined and measured the correct amount of medication for their child.

In Lokker et al’s (2009) study parents were given a series of surveys including OTC medication labels and asked questions about appropriateness of use. Nearly all (98%) caregivers thought that at least one of the four products they examined was appropriate for a child aged under 24 months based on packaging alone (word ‘infant’, picture of infant or teddy, symptoms listed). This was despite the fact that each product package specifically recommended consulting a physician before administering the medication to a child less than 24 months old. After examining the entire product package, 51% of caregivers stated they would give the medication to a 13-month-old child with cold symptoms and 72% stated they would administer at least one of the four products to a 13-month-old infant with cold symptoms.

A number of medication errors occur in the home (Walsh et al 2011), including missed doses, underdosing and overdosing as a result of poor parent health literacy. While it is clear that low parental health literacy correlates with worse health outcomes for children, limited research has focused on children themselves.

Children’s health literacy

Introducing health literacy at a young age can help children interact effectively with healthcare systems and enhance their capabilities to understand health information, both of which would improve health outcomes later in life (Manganello 2008). Although children may have the cognitive capacity and capability to learn, they can often be subconsciously guarded from exposure to new knowledge and health experiences when parents take on the role of managing their health care (Wolf et al 2009). One study involving children with cancer found that 83.3% of those (n=16) aged six to 18 years wanted to learn about and be more involved in their medication management, however, information and instructions were almost always directed to parents (Macdonald et al2011).

Children aged 3-18 years can understand, appraise and employ health material when the information is presented in an age-appropriate way (Borzekowski 2009). The worldwide web is one of the most accessible sources of health information for children and adolescents of all levels of literacy skills and from all socioeconomic groups (McCormack et al 2010, Knapp et al 2011). The method used to deliver information affects how individuals retain new knowledge, and computer-based visual evidence is one of the best methods for enhanced data retention (Patel et al 2008). As children and adolescents frequently use technology to retrieve health information, they are a target population for many health-related educational interventions (Manganello 2008).

In a systematic review to assess the prevalence of low health literacy among adolescents, young adults and child caregivers in the US, Sanders et al (2009) identified two studies reporting a low health literacy range of 16-34% among adolescents aged 10-19 years recruited from a school district and a cohort of high-risk urban children. This has implications for young people who are increasingly becoming involved in their own health care, especially those with chronic conditions (Chisolm and Buchanan 2007, Manganello 2008). Low literacy among adolescents appears to correlate with greater antisocial and risk-taking behaviours (DeWalt and Hink 2009).

Health outcomes could be improved if children learned how to make healthier decisions and recognise the consequences of their choices (Menzies 2012). The blueprints for our health as adults are determined to a large degree in childhood, and the knowledge, skills and behaviour patterns acquired during adolescence are carried into adulthood (Borzekowski 2009, Chang 2011).

Framework for adolescent health literacy

Manganello (2008) proposed a framework for adolescent health literacy (Figure 2). Three central factors combine to contribute to an adolescent’s health literacy:

• Individual adolescent traits, such as age, race, gender, culture, social, cognitive and physical skills, and media use.
• Adolescent interpersonal interactions with peers and parents, who can influence their health literacy, such as encouraging reading and health behaviours, for example correct administration and use of medication.
• Systems such as the media, education and healthcare, all of which can help develop adolescent health literacy through educational and/or other interventions, such as health education classes on understanding and evaluating health information.

Figure 2

Adolescent health literacy is central to Manganello’s framework (Figure 2). Building on Nutbeam’s (2000) developmental levels of health literacy, Manganello (2008) highlighted that adolescents need to be able to develop basic functional skills – such as reading, writing and numeracy – in addition to interactive, media and fundamental skills – such as cognitive analysis, problem-solving and social skills – to be health literate. The framework concludes by illustrating how health literacy can influence outcomes, including behaviours, service use and costs.

Part two of this module discusses how to detect low levels of health literacy in parents or carers and children, associated issues – such as stigma and discrimination – and strategies for supporting health literacy in practice.

Learning Points

1. Adult populations have shown correlations between inadequate health literacy and poor health outcomes such as: difficulty recognising and reporting symptoms, inability to self-administer medications correctly and self-manage medication side effects, inability to understand and concord with treatment plans, and inappropriate use of healthcare services with associated unnecessary healthcare costs and greater mortality risks.
2. Parents with high health literacy can still be prone to making errors in medication dosages. Many studies reveal that parents were not aware that dosages were calculated according to a child’s weight. This lack of awareness is more likely to result in inaccurate medication dosage.
3. A number of medication errors occur in the home, including missed doses, underdosing and overdosing as a result of poor parent health literacy.
4. Introducing health literacy at a young age can help children interact effectively with healthcare systems and enhance their capabilities to understand health information, both of which would improve health outcomes later in life.
5. Three central factors combine to contribute to an adolescent’s health literacy, namely individual adolescent traits, interpersonal interactions with peers and parents, and systems such as the media, education and healthcare.
6. Adolescents need to be able to develop basic functional skills – such as reading, writing and numeracy – in addition to interactive, media and fundamental skills – such as cognitive analysis, problem-solving and social skills – to be health literate.

Conclusions

• Health literacy involves a complex set of cognitive, social and navigational skills including language proficiency, reading ability, numerical literacy and the capability to interact with healthcare employees, complete complicated documents, and understand risk and probability.
• Limited health literacy is associated with adverse health outcomes.
• Children’s health outcomes depend on parental ability to understand preventive care recommendations and older children’s expected ability to understand increasingly complex information to make their own healthcare decisions.

• Acronym

  OTC: over the counter

• Glossary

  Asthma: a chronic inflammation of the airways associated with widespread, variable airflow obstruction. Symptoms include wheezing, coughing, breathing difficulties and chest tightness.
  Health literacy: literacy in the healthcare environment – being able to understand and take action from reading and/or hearing about health-related information.
  Overdosing: an excessive dose of a drug, which can result in adverse reactions ranging from mania or hysteria to coma or death.
  Sensorimotor: pertaining to both sensory and motor nerve functions.
  Zone of proximal development: this concept was developed by psychology Lev Vygotsky and refers to the difference between a learner (child) can achieve independently versus what they could do with assistance or guidance.

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