For the majority of clients and their families, a chronic illness constitutes a life-changing event uniquely affecting them as they deal with the added demands and long-term nature of the particular disease. Perhaps more importantly, chronic illnesses do not always have a similar trajectory of presentation and management (e.g., asthma, heart disease, depression, cancer, stroke, arthritis, diabetes, and hypertension), and they do not discriminate according to age, race, gender, socioeconomic status, culture or ethnicity, or learning capability. Furthermore, the client and family’s response and resources to cope with chronic illnesses may vary tremendously, requiring healthcare professionals (HCPs) to be attuned to each client and family’s particular needs, expectations, resources, and personal goals.
Data further indicate that treating clients with chronic diseases accounts for 75% of U.S. healthcare spending and two-thirds of our current increase in healthcare spending is related to the expanded prevalence of treating chronic disease (Centers for Disease Control and Prevention, Chronic Disease Prevention and Health Promotion, 2010
). The vast majority of chronic diseases (e.g., pulmonary, hypertension, heart disease) could be prevented or better managed by adopting a more client-centered, multidisciplinary approach that fosters client and family involvement, client self-management, and continuous quality im-provement (Partnership to Fight Chronic Disease, 2010
). For example, Woodhouse, Peterson, Campbell, and Gathercoal (2010)
found a significant reduction in the costly use of emergency room visits by high user clients with chronic pain who received targeted educational/behavioral interventions to better manage their condition. Thus, maximizing the client and family’s coping with chronic illness and improving their knowledge, attitudes, and behaviors in conjunction with HCPs providing a more unified approach and subsequent monitoring, management, and evaluation of care outcomes are central aspects of the care-delivery process. Given that many clients and their families are likely to experience more than one chronic illness in a lifetime, it is critical for HCPs to be cognizant of the potential interplay of diverse chronic illnesses that may influence the client and family’s responses to further losses such as incontinence, fatigue, diminishing cognitive function, or mobility.
It is also well documented that educating clients and their families is critical to successful coping with chronic illnesses and overall longterm quality of life. Plus, the family frequently serves as the client’s primary support system affecting the client’s decision making about
health, seeking health care, and adherence to recommended healthcare recommendations (e.g., taking prescribed medication, following a diet, having a recommended procedure or test) (Falvo, 2011
). Although there are often some commonalities, each client and family situation has its distinctive characteristics that require HCPs to approach every situation carefully and systematically without making assumptions as to the client and family’s resources, capability to learn, and ability to achieve educational outcomes. Moreover, HCPs must continually assess the factors influencing the client and family’s educational needs, the teaching and learning approach, and evaluation of short- and longterm outcomes. Another central element in this educational process is identifying what clients and their families want to learn, their priorities in terms of their educational needs, and having mutual goal setting, so that clients, families, and HCPs are working together to achieve common goals.
Because numerous factors contribute to the success or failure of client and family education pertaining to chronic illness, this chapter presents an overview of the fundamental elements that should be considered and clarifies the state of evidence-based knowledge pertaining to client and family education related to chronic illnesses. Even though much is known regarding client and family education, the literature and research do not suggest simple solutions or approaches that will optimize this educational process in all situations. In addition, the nature of the chronic disease(s) as well as the specific attributes of the learner(s) such as age, gender, race/ethnicity, culture, socioeconomic status, motivation, self-efficacy, psychological conditions (depression, bipolar disorder), sensory deficits (low-level vision, hearing impairment, literacy, learning capability), and/or learning disabilities will significantly influence how the HCP approaches and evaluates the success of each client and family educational encounter. The primary focus of this chapter is the adult learner. However, a basic distinction is described regarding key learning differences between adults and children. Finally, because this chapter only purports to present a broad overview of key issues affecting client and family educational processes regarding chronic illnesses, it is highly recommended that additional evidence-based resources be obtained to more specifically target the chronic illness and client population of concern, recognizing that research and the associated findings continue to expand the science of what is known.
The Teaching-Learning Process
The teaching-learning process is characterized by multifaceted, dynamic, and interactive exchanges that are fundamental to client-family education and nursing practice. Teaching involves a deliberative, intentional act of communicating information to individuals in response to their identified educational needs and with the objective of achieving a desired outcome (Falvo, 2011
; Bastable, 2006
). Learning, on the other hand, assists the individual to acquire new knowledge, skills, and/or attitudes that can be measured (Bastable, 2006
). A review of the literature reveals that there are more than 50 major teaching-learning theories that can shape an educational intervention (Learning Theories Knowledge Base, 2011
Although many theories and frameworks are applicable to client and family education, behaviorist theory, social-cognitive learning theory, humanistic learning theory, and constructionist theory have been identified as particularly helpful in shaping educational interventions. Each offers a different orientation of what is most important and what should be the HCP’s focus of attention when educating individuals with chronic illness and their families. In addition, each has a particular perspective in terms of how teaching and learning are defined, measured, and structured, as well as the phases of learning.
For example, the behaviorist framework states that learning is the result of connections between the stimuli in the environment and the individual’s responses (Skinner, 1974
). So if an educator wants a client and/or family to learn new information or alter their attitudes and responses, such as the new need for a client to receive a subcutaneous insulin injection twice daily, the educator would alter the conditions in the environment (e.g., information available on the hospital educational cable system) and reinforce positive new behaviors when they occur (e.g., praise when the injection is given correctly).
On the other hand, social-cognitive theory includes role modeling as a central concept and offers a different approach to teaching clients and their families to perform the same task (Bandura, 1986
). In this identical situation, using the social-cognitive theory, the nurse educator would demonstrate how to perform the insulin injection and then have the client, if capable, perform the insulin injection when next scheduled.
Meanwhile, if Maslow’s Hierarchy of Needs, one of the best known humanistic frameworks, was applied to this identical scenario, the educator would first need to fulfill lower level needs such as physiologic needs and safety before being concerned about teaching the client how to perform the insulin injection.
Finally, the constructionistic learning theory offers an additional alternative theoretical perspective to guide the HCP’s educational encounter, asserting that learners are actively creating meaning as they learn. When viewed from this constructionist orientation, learning is perceived as contextual, requiring not only time, social contact, and motivation, but also creating meanings that foster learning over time and its application (Hein, 1991
). In the case of learning how to properly give an insulin injection, the constructionist theory provides a framework to connect the client’s understanding/meaning of how the insulin injection should be correctly given, the client’s motivation to learn this activity, the time required to correctly perform this task, and the contribution of the HCP who is teaching this skill.
In summary, theoretical frameworks offer alternative ways to approach a teaching-learning situation involving clients and their families. Because there are a myriad theoretical frameworks, it is important that HCPs determine what is most relevant to their situations, examine available evidence-based research pertaining to that framework (preferably evidence published in the last 5 years), and then translate that framework to their particular client-family interactions, and systematically evaluate the efficacy of using that perspective to direct their educational interventions.
In conjunction with the numerous teaching -learning theories that guide the HCP’s
client-family educational encounters, it is valuable to contemplate several basic assumptions underpinning these interactions. According to Petty (2006)
, learning involves “an active process of making sense and creating a personal interpretation of what has been learned” (p. 8), rather than simply an exact interpretation of what has been taught. What occurs is more than just a storing of personal interpretations of facts and ideas, it is “also linking them in a way that relates ideas to other ideas, and to prior learning, and so creates meaning and understanding” (p. 8). When viewed from this perspective, learners construct meaning that is more easily applied to solve problems, make judgments, and assist clients and their families to perform the numerous tasks associated with living with one or more chronic illnesses. Evidence is steadily expanding to support the constructivism perspective and its positive outcomes (Muijs & Reynolds, 2005
). In addition, results from multiple metaanalyses of educational research reinforce the pivotal influence that feedback and reinforcement exert on individual as well as group learning (Petty, 2006
Significance of Client and Family Teaching to Practice and Healthcare Costs
Practice standards from the American Nurses Association (ANA), the American Association of Colleges of Nursing (AACN), the National League for Nursing (NLN), specialty nursing practice standards, and other national documents consistently identify health teaching as a fundamental component of nursing practice (ANA, 2004
; Lindell et al., 2005
). Even in the early writings of Florence Nightingale, teaching was recognized as a prominent nursing activity (Nightingale, 1992
). In addition, all state nurse practice acts include teaching within the scope of nursing practice responsibilities and essential to promoting optimal health and disease management of clients and their families.
The underlying premise of Healthy People 2010
and Healthy People 2020
(U.S. Department of Health and Human Services, 2010
) is that an individual’s health is almost inseparable from the health of the larger community and is profoundly influenced by the collective beliefs, attitudes, and behaviors of this community. Throughout this comprehensive national health promotion and disease prevention roadmap, there is a recurrent theme emphasizing the improvement of “the availability and dissemination of health related information” (Healthy People 2010,
p. 17) pertaining to the leading health indicators of our society. Central to accomplishing these health objectives is education of all stakeholders (i.e., clients, families, HCPs, the overall community). Healthy People 20
20 further emphasizes how disparities in income and education are associated with higher levels of occurrence of illness and death and place greater importance on targeting community-based health educational programming. For instance, Healthy People 2020
focuses on the systematic and targeted health promotion education and preventative actions for adults who are most at risk for long-term health problems/diseases. Plus, the 2020 edition emphasizes the coordination and targeting of health promotion education and other activities beginning in preschool and continuing through high school. Healthy People 2020
concentrates on health problems such as unintentional injury, violence, dental caries, unhealthy dietary patterns, tobacco use and addiction, and alcohol and drug use—all having ramifications for long-term chronic health issues.
In addition to Healthy People 2020 emphasizing the importance of evidence-based, coordinated, targeted, and individualized client and family education, the Joint Commission (JC, 2010) 2011 Hospital Accreditation Standards identify specific critical educational standards that must be achieved by organizations seeking accreditation. The JC (2010) standards include:
PC.02.03.01 The hospital provides client education and training on each client’s needs and abilities.
1. The hospital performs a learning needs assessment for each client, which includes the client’s culture and religious beliefs, emotional barriers, desire and motivation to learn, physical or cognitive limitations and barriers to communication.
4. The hospital provides education and training to the client based on his or her assessed needs.
5. The hospital coordinates the client education and training provided by all disciplines involved in the patient’s care, treatment, and services.
10. Based on the client’s condition and assessed needs, the education and training provided to the client by the hospital include any of the following: An explanation of the plan of care, treatment, and services. Plus, basic health and safety information need to be included with a special emphasis on the safe and effective use of medication…. Discussion of pain, risk for pain, the importance of effective pain management, the pain assessment process, and methods for pain management, information on oral health, safe and effective use of medical equipment, supplies provided by the hospital, also what rehabilitation techniques need to be in place to help the client reach maximum independence, strategies to reduce falls.
25. The hospital evaluates the client’s understanding of the education and training it provided.
27. The hospital provides the client education and how to communicate concerns about the client’s safety issues that occur before, during, and after care is provided.
The Joint Commission patient education standards further specify that clients and families assume an active role in this process and have responsibilities just as the educator does. In instances where they do not understand the information, they are to indicate this and must take responsibility for self-management of their needs when capable (e.g., medication, safety, nutrition, pain). Moreover, the educator is expected to consistently and comprehensively assess the client and family’s learning needs and barriers affecting the educational outcomes. In addition, the Joint Commission expects that educational activities be coordinated, tailored according to the clients and families needs/abilities, and evaluated to determine if learning has occurred.
During the 2002 Summit on the Education of Health Care Professionals (Institute of Medicine [IOM], 2003), it was emphasized that the education of all HCPs is in serious need of a “major overall” (p. 1
) to be better prepared to fulfill the needs of clients and the changing healthcare system. Current nursing graduates must engage in evidence-based practice and integrate research findings pertaining to client and family teaching (IOM, 2003
). Building upon this trend of expanding nursing roles, the National League for Nursing Task Group on Nurse Educator Competencies identified core competencies of nurse educators, underscoring their need to engage in scholarly activity pertaining to teaching and learning.
Data from the Centers for Disease Control and Prevention (CDC) highlight the pivotal role that education has in clients’ self-management of chronic illness. For instance, the CDC reports that for each dollar invested in diabetic education to assist clients to self-manage their diabetes and prevent hospitalizations, healthcare costs are reduced by $8.76 (CDC, 2005
). With regard to heart disease and stroke, they further emphasize that much of the burden associated with these two diseases can be eliminated by reduction of major risk factors such as high blood pressure, high cholesterol, tobacco use, limited physical activity, and poor nutrition. By targeting client and family education on those modifiable risk factors, the likelihood of heart disease and stroke can be significantly diminished and personal and financial costs reduced. The 2010 passage of the
Patient Protection and Affordable Care Act into law is estimated to reduce the number of uninsured by 31 million in 2019 at a net cost of $938 billion over 10 years while reducing the deficit emerging from escalating healthcare costs by $124 billion during that same time period (Kaiser Foundation, 2010
). Several of the benefits of this law are as follows:
Insurance for people with pre-existing conditions
Coverage for preventive care and screenings such as immunizations and screening for conditions such as cancer and diabetes
More spending on care—at least 80% of a customer’s premium dollars need to be for direct medical care and efforts to improve quality care
All insurance plans must include mental health and substance abuse services by 2014
Starting in 2011 persons with Medicare will have an annual wellness visit that includes a personalized prevention plan that identifies health risk factors and treatment options
A main feature of these changes and others included within this legislation is the focus on prevention and management of chronic healthcare conditions. As a result, identifying evidencebased effective, timely, and targeted educational interventions will be pivotal to achievement of short- and long-term health outcomes in settings spanning from acute to long-term care. In addition, with the passage of this legislation, there is a growing demand to perform research focusing on the expansion of the evidence that underpins our educational interventions and attainment of the preferred client and family outcomes. When contemplating how to choose and develop written educational materials, Pierce (2010)
provides valuable recommendations that should be considered.
Basic Differences Between Child and Adult Learners
The term pedagogy
is defined as the art and science of teaching children, while andragogy
refers to adult learning (Bastable, 2006, p. 451, 466
). When teaching children versus adults, the key principles operating during the teachable moment are distinctly different, as indicated in Table 15-1.
Quality of Research and Evidence
When developing educational interventions for clients and their families, it is important to first determine the quality of the evidence forming the basis for the planned actions. Evidence-based practice (EBP) refers to a problem-solving approach used in practice that combines the following three components: the best available evidence; the HCP’s clinical expertise; and the client’s values and preferences (Melnyk & Fineout-Overhold, 2010
). The highest level of evidence is a well conducted meta-analysis and systematic review of randomized control trials (RCTs) (Craig & Smyth, 2002
; Melynk & Fineout-Overhold, 2010). However, a review of the literature reveals that a sizable portion of present knowledge directing our educational interventions is of a lower level of evidence quality than preferred such as single randomized trials, nonrandomized studies, consensus opinion of experts, and case studies. Results of a systematic review of 139 educational RCTs involving more than 22,000 clients with diabetes, asthma, or congestive heart failure (CHF) reveal that many of these RCTs draw inappropriate conclusions, with researchers frequently tending to overgeneralize their findings and include their opinions that are
not based on research evidence (Boren, Balas, & Mustafa, 2003
). Therefore, educators need to carefully scrutinize the level of available evidence that underpins their practice, determine whether stated implications in research studies extend beyond the documented evidence, and recognize the tentative nature of our knowledge.
Table 15-1 Comparison of Assumptions Pertaining to Teaching and Learning for Children and Adults
Rely on others to decide what is important to learn. Teacher is dominant. Learning is teacher led.
Decide for themselves what is important to learn (self-directive).
Expect what they learn will be helpful in the future.
Expect what they are learning to be immediately useful/applicable.
Have little or no experience on which to build knowledge/skill.
Have abundant experience.
Possess little ability to serve as a resource to teacher or classmates.
Possess great ability to serve as a resource to teacher and other learners (active student role).
Expect to be taught and take no responsibility.
Like to take control of the situation.
Not necessarily ready to learn.
Imply their motivation to learn, because they are present in the learning situation.
View learning as a process of acquiring information to be used at a later time.
View learning as a process of increasing competence to achieve a fuller life potential.
Sources: Bastable, S. B. (2006). Essentials of patient education. Sudbury, MA: Jones andBartlett; Conner, M. L. (2005). Andragogy and pedagogy. Ageless Learner, 1997-2004. Retrieved August 24, 2011, from:agelesslearner.com/intros/andragogy.html; Knowles, M. (1998). The adult learner: The definitive classic in adult education and human resource development. Houston, TX: Gulf Publishing; Mihall, J., & Belletti, J. (1999). Adult learning styles and training methods. FDIC ADR Presentation Handouts. Retrieved September 6, 2011 from www.justice.gov/adr/workplace/pdf/learstyl.pdf
An excellent illustration of how knowledge evolves is demonstrated by the Internet and the increasing prevalence of online learning that has reshaped, in many instances, the education of clients, families, and HCPs worldwide. In a study investigating clients’ seeking trends for additional health information regarding their disease/health problem, Rahmqvist and Bara (2007)
identified from a sample of 24,800 respondents that young and middle-aged clients primarily use the Internet to expand their knowledge. Despite this Internet access facilitating clients becoming more informed, they stress the inherent quality issues associated with public access to a blend of poor as well as high-quality, evidence-based online health information. Their findings were reaffirmed by Gremeaux and Coudeyre (2010)
, who performed a systematic review of the Internet and therapeutic education of patients and found that HCPs must work to create quality sites that provide accurate evidence-based data and best practices pertaining to chronic disease management for clients and their families.
Assessment of the Learner
A critical aspect of the client and family educational process is the assessment phase that shapes the other steps in the process, such as planning the
educational event/program, its implementation, and evaluating outcomes. However, just as vital signs are obtained to determine the client’s physiologic state, so too must certain essential information be obtained in this initial assessment that will affect how the education is structured, delivered, and evaluated. Because it is assumed that the client and family dealing with the chronic illness are equal partners with the HCP, the following are critical questions to ask the client and family:
What information do you want provided? Recognize that the client and family may identify different needs. If so, make sure each of their needs is addressed.
Are there any new skills that you want to learn or ones you want to review?
What are your specific educational goals for the client and family? You may need to give an example (e.g., correctly identify signs/symptoms of hypoglycemic reactions; know what to do when an insulin reaction occurs and how to correctly give an insulin injection). The HCP must recognize that client and family goals can focus on knowledge, attitude (i.e., self-efficacy), and/or skill acquisition.
Of the goals identified, what is most important? Once again, the client and family may differ markedly in specific goals and priorities. Listen carefully to both of them.
What do you perceive as factors that affect your ability to achieve these educational goals? How will barriers be overcome?
Do you feel confident using the information provided to you? If not, how may I assist you in increasing your confidence and ability to use this information?
When clients and family members are providing answers, the HCP must always be an astute listener, nonjudgmental, capable of developing individualized and attainable client and/or family goals, and reflect back to the client and family their understanding of what has been heard (Miller, 2003
). While collecting the relevant client and family data, the HCP needs to be organized, perform the assessment in a timely manner, and be aware of readability of assessment materials. In addition, the client with chronic illness often has associated limitations that affect the assessment (e.g., easily fatigued and diminished hearing and/or vision and/or comprehension).