University of Applied Sciences , Utrecht, The Netherlands
Patient education is more effective by tailoring, individualization, feedback and reward, facilitation, and participation (Sect. 5.1).
Self-management is about how patients can handle their own health and improve their self-management behavior within the framework of their personal opportunities (Sect. 5.2).
In the Chronic Care Model, the contact between patient and professional is central (Sect. 5.3).
Stepped Care focuses on self-management in chronic health problems (Sect. 5.4). The prerequisites of self-management play a role: the exchange of information, participation, decision-making, and dealing with the negative sides of health advice (Sect. 5.5).
Barriers in the communication between the professional and the patient include: instrumental/task-oriented behavior, verbal/nonverbal behavior, privacy, use of medical language, and control (Sect. 5.6).
Positive affective nonverbal behavior and positive verbal behavior result in patient satisfaction and well-being, concordance, understanding and remembering, and shared decision-making (Sect. 5.7).
Important in concordance are: patient compliance/infidelity; compliance and adherence; shared decision-making (Sect. 5.8). Important in non-concordance are patient and social characteristics, characteristics of the health problem and of the treatment, and the context of health care (Sect. 5.9).
For understanding and remembering the following are of interest: the amount of information, the primacy and recency effect, focusing on the patients, selective perception, and fear (Sect. 5.10).
The well-being of the patient is reflected in, among other things, the optimization of the health status, more control over the conversation, and a positive outlook on the issues (Sect. 5.11).
Patient participation promotes self-management (Sect. 5.12).
Patient empowerment enhances self-management, increasing the participation and individual responsibility for lifestyle and health behavior (Sect. 5.13).
Shared decision-making is an interpersonal process in which health care provider and patient work together to achieve health-related decisions (Sect. 5.14).
Effective self-management is reflected in: relevant decisions, health behaviors, dealing with symptoms, self-regulated behavior and well-being, and a strong support group (Sect. 5.15).
With intervention mapping you develop, step by step, based on evidence, a health intervention to optimize self-management targeting a specific patient group (Sect. 5.16). In intervention mapping step 1, you analyze the health problem (Sect. 5.15.1).
In intervention mapping step 2, you state the objectives of the self-management intervention (Sect. 5.15.2).
In intervention mapping step 3, you select your methods and theories for changing behavioral determinants, intention, and self-management behavior. The phase of life of the patient is important (Sect. 5.15.3).
The purpose of intervention mapping step 4 is to the design a specific self-management intervention.
Section 5.16 describes the Model Supporting patient self-management; the training in this section is to support patients in improving their self-management and lifestyle behavior.
Motivational interviewing seeks to increase the intrinsic motivation by the patient aware of choosing the desired (self-management) behavior (Sect. 5.17).
Stages of change is another model (Sect. 5.18).
The Patient Participation Model gives an insight into how to improve self-management in the patient’s treatment process and consists of five stages (Sect. 5.19).
With the 5a’s construct you can promote self-management when the patient has (chronic) health problems (Sect. 5.20). By using the Ask-Tell-Ask method better information can be given (Sect. 5.21).
Social relationships can promote self-management and behavioral change in the patient, or undermine it. Social relationships should be supported in the health care plan (Sect. 5.22).
Informed consent regulates the duty of information and requirement for permission (Sect. 5.23).
eHealth can positively influence self-management support; it improves patient empowerment and patient participation (Sect. 5.24).
In intervention mapping step 5, you create an implementation plan. The information message is more effective when it focuses on the needs of the patient and lets him participate (Sect. 5.25).
Coordination and continuity of information are important for patients (Sect. 5.26).
In intervention mapping step 6, you write the evaluation plan, with its own effectiveness, health behavior, attitudes, and health status as indicators for the effectiveness of an intervention (Sect. 5.27).
Finally, there is separate training to use in promoting self-management (Sect. 5.28).
After a consultation, nursing professionals may expect a patient to automatically follow up the recommended lifestyle changes and health instructions. This is based on the assumption of the nursing professionals that the patient wants to have the lifestyle and health advice, but also has the capacity to follow them up. If health care professionals provide recommendations and instructions and the patient does not follow them up, it is inefficient and ineffective. The conflict arises because nursing professionals assume that their opinions will be followed up, whereas improving self-management requires the use of a communication process, developing a relationship; that information can be exchanged, shared decision-making is key, and optimizing self-management is the ultimate goal.
Patient education and promoting self-management of the patient, is not simply informing the patient. It is also more than repeating the explanation you have given to the patient or the awarding of a glossy brochure. Patient education and promoting self-management involve entering into a cooperation process with the patient in which there is mutual participation. This requires the education and communication process-oriented clinical skills of nursing professionals. Patient education and promoting self-management starts by exploring the specific educational needs of the patient. Patient education and promoting self-management is about individualizing the lifestyle and/or health advice, and about providing coaching and support tailored to the unique patient situation. Patient education and promoting self-management is also about follow-up and assessing if the nursing professional’s intervention was effective.
Nursing professionals can provide patient education and promote self-management as part of their already full schedule using efficient and effective implementation. Patient education and promoting self-management of the patient would need to have a place in every interaction with the patient, as an organized and structured part of patient contact. The effectiveness of nursing care is greater if the self-management of the patient increases (Falvo 2004). In the past, patients were supposed to take on a passive role if they came into contact with health care. Hospital admissions were long, long-term nursing care was offered during the recovery process, and the patient’s expectations of the self-care were relatively simple and limited. However, according to the increase in the number of people who survive acute health problems and the increase in the number of people with chronic health problems, treatment and recording time are drastically shortened. At home again, the patient should be able to deal with a complex health situation and recover further.
In this chapter, we report that patient education and promoting self-management by nursing professionals has many important aspects, including the relationship with disease prevention (Sect. 5.1) and barriers to promoting self-management (Sect. 5.2). Important effects of promoting self-management are patient satisfaction (Sect. 5.3), concordance (Sect. 5.4), understanding and remembering (Sect. 5.5), the well-being of the patient (Sect. 5.6), patient participation (Sect. 5.7), shared decision-making (Sect. 5.8), and effective self-management (Sect. 5.9). The importance of intervention mapping for promoting self-management is underlined in Sect. 5.10. In Sect. 5.11 we describe the ins and outs of promoting self-management behavior. In this chapter, we also go into different models such as motivational interviewing and internships or changes (Sects. 5.12 and 5.13) and the 5as and Ask-Tell-Ask (Sect. 5.15). In Sect. 5.14, we give specific attention to self-management behavior in chronic and significant health problems and in Sect. 5.16 to the support of the social environment. The importance of informed consent is discussed in Sect. 5.17, eHealth in Sect. 5.18. In Sects. 5.19–5.22 we return to intervention mapping because of the important role of this model (planning and performing) in self-management interventions by nursing professionals. This chapter concludes with a separate training exercise to be used in promoting self-management of the patient.
5.1 Disease Prevention, Patient Education, and Self-Management
Prevent health problems, but if the health problem is already present, learn to deal with restrictions related to a further deterioration in health.
Planned process with targeted goals that are formulated in consultation with the patient, to change lifestyle and behavior with a favorable effect on the health problem and the patient’s self-management.
Patient education does not just mean patient information.
To prevent disease, it is important to promote lifestyle and behavioral changes that are beneficial to the patient. By implementing these lifestyle and behavior changes, the patient is able to better cope with his health problem, and optimize his health within the opportunities available. The goal of disease prevention is to prevent health problems, but, if the health problem is already present, the patient should learn to deal with restrictions related to a further decline in health. For nursing professionals, disease prevention is about optimizing the health of the patient within given constraints. Disease prevention is closely related to patient education. Patient education can contribute to disease prevention, because education can motivate the patient to start behaving themselves in a healthier way. It can contribute to disease prevention, because the patient can be motivated toward self-management. Patient education is a restructuring of health promotion and health education, in that the theoretical backgrounds of health promotion and health education can be used for patient education. The relationship among disease prevention, health education, patient education, and psycho-education is schematically shown in Fig. 5.1. A succinct description of patient education is: “the process or influencing patient behavior and producing the changes in knowledge, attitudes and skills necessary to maintain or improve health” (Falvo 2004).
Patient education in relation to prevention and health education
What is patient education? Patient education can be defined as a systematic process with targeted goals that are formulated in consultation with the patient, to change lifestyle and behavior in such a way that a positive effect on the health problem and self-management of the patient may be expected (from Damoiseaux 1988). Self-management contributes to patient education, because by implementing patient education, self-management of the patient can be optimized (Bodenheimer 2002 in: Coster and Norman 2009).
Patient education is an integral part of systematic nursing professional care. In nursing care, the target-oriented change in social–cognitive determinants, intention, and behavior enables the patient to change his lifestyle and (health) behavior and improve his self-management. When nursing professionals determine in consultation together with the patient what the desirable changes are, the patient can change, which can have a beneficial effect on self-management and on the health status of the patient. Using patient education, as a nursing professional, you always start from the individual patient situation and the fact that the patient has the right to be well informed. The patient should be able to make informed decisions on matters associated with his health problem and health. Also, you should enable the patient to optimize his self-management, so that his health improves and his quality of life increases.
In an era where lots of information is available and where many different sources of information are available, people receive a lot of information about health, mostly general information. In health care, many health professionals including nursing professionals expend a lot of effort in informing the patient about all kinds of aspects of disease and about self-management. However, patient education is not only about informing the patient. Informing the patient rarely leads to lifestyle and behavioral changes, information will not “create” patients implementing optimal self-management. Thus, patient education and improving self-management is not only about giving information, but also about communicating with the patient, assessing his needs and wishes, developing an open relationship in which it is common to exchange information and feelings, and speak freely, decisions can be shared and compliments and complaints can be talked about.
What is patient coaching? Patient coaching is about initiating lifestyle and behavior changes and promoting self-management of the patient, not by giving information to the patient, but by starting a coaching process. To initiate lifestyle and behavioral changes and to promote self-management, patient coaching is more useful than patient information. With the aim of putting patients in control, you can promote well-being by improving the patient’s self-management.
What do patients want with regard to patient education? “Patients want to be taken seriously, want good explanations and information. They don’t want to tell the same story to each new healthcare provider. And they want to be able to make decisions together about their care and treatment” (Delnoij 2012).
Self-management: the foundation of each (nursing) intervention to put patients in control of their health situation and to promote well-being.
Self-management is about:
Handling symptoms of the disease
Handling medication and side-effects
Monitoring and handling the health situation
Handling negative emotions related to the health problem
Being the director of their own treatment and care process
For self-management, self-correcting behavior is needed.
Self-management is the individual capacity of the patient to handle his health problem, the symptoms and the physical and psychosocial consequences of his health problem, and to make lifestyle changes inherent to having the health problem (Barlow 2002). Self-management behavior is complex behavior. The patient should monitor his own state of health, should signal signs and symptoms and respond to improvements in well-being and quality of life. Nursing professionals should facilitate and support the self-management of the patient. Often, nursing professionals should also have to involve the people in the social network that can support the patient in his own management. Promoting and supporting self-management is now a standard part of nursing care. Promoting the self-management of the patient is the foundation of each nursing intervention to put patients in control of their health situation and to promote well-being (Parchman et al. 2003).
Self-management is about how patients can handle their own health and improve their self-management behavior within their personal opportunities.
What kind of behaviors are linked to self-management for (chronic) patients? To have more control over his health situation, a number of the patient’s behaviors are connected to self-management (Ryan 2009). First, a patient with a chronic health problem changes his behavior to handle the symptoms related to the chronic condition, for example, symptoms such as coping with pain, fatigue, and shortness of breath. Second, a patient with a chronic health problem should manage his medication, both for prescription medications, and (if necessary) manage over-the-counter medicines. For example, the patient must recognize and deal with side effects of medication use, report any unintended effects of medication, and report if the medication has not the desired effect. Third, the patient with a chronic health problem should monitor his health and take decisions based on this monitoring. For example, the patient should monitor blood glucose levels and target certain values in the blood using medication. Or, he should monitor his body weight and targeted action if his weight is increasing or decreasing. Fourth, the patient with a chronic health problem should cope with negative emotions and despite his health situation continue to carry out his social and societal roles. Finally, the patient should direct his own treatment and care process with regard to his chronic health problem (VWS 2011).
Does self-management focus on symptom management or on learning to live with the health problem? A review revealed a difference in focus in different self-management interventions (Coster and Norman 2009). In patients with asthma, diabetes, epilepsy, and bipolar disorders, the focus was on symptom management, such as monitoring air flow or blood glucose. In these interventions, the focus was learning strategies based on action plans to identify symptoms and to prevent or limit negative effects. These self-management interventions have direct visible effects on the health of the patients. Also, knowledge was improved. In patients with arthritis, back pain, cerebrovascular accident, and eczema, the focus was on the psychosocial problems of the patient and how to live well with the health problem. These self-management interventions were shown to be less effective, and the long-term effects were unclear (Coster and Norman 2009).
Is self-correcting behavior important in the case of self-management? Self-management asks the patient for self-correcting behavior, which is not easy. This self-correcting behavior is described as: “watch, discover, think and act!” (Kok and Schaalma 2004). For self-management, the patient should monitor one or more aspects of his health problem, for example, his blood glucose levels. These aspects of the health problem are a constant concern for the patient. Second, for self-management the patient evaluates these aspects of his health. The patient compares his own observation data with normal values, or the patient analyzes the cause of the problem. The patient tries to discover if, for example, his blood glucose level differs compared with the values he wants his blood glucose to have, and thinks about how he can handle the situation. Third, the patient should act. The patient should respond to his findings by deploying a behavioral correction of the aspects associated with the health problem. The patient considers and plans the solution, and performs the intent to the desired behavior. Self-management is about more than putting these steps into motion, and this underlines the complexity of self-management (Kok and Schaalma 2004). Most patients with chronic health problems should manage their health problem daily. Often, these patients and the people in their social network are not prepared for this responsibility. This can cause patients to have to go to a hospital, the desired outcomes of care are not achieved, and a pressure persists on primary health care. These are all indicators that the self-management of the patient does not reach the desired level (Ryan 2009). Successful self-management has important benefits not only for the patient himself, but also for the health care system and society as a whole.
5.3 Chronic Care Model
The chronic care model (Fig. 5.2) is aimed at offering chronic care in a good way (Wagner et al. 1996). In the chronic care model, self-management is important. The model gives attention to stimulating and supporting patients with chronic health problems and their families to manage the health problem in daily life. Huiben (2011) describes self-management as the individual ability to handle symptoms, treatment, physical and social consequences, and lifestyle changes inherent to living with a chronic condition.
In the chronic care model, the contact between the patient and the healthcare provider is central. With self-management, the patient is the director of his own treatment and care process. The patient learns to deal properly with his health problem and to get support from health care providers or people from his social network. The health care provider is a fixed point of contact for the patient and coordinates the care around the patient’s self-management. The health care provider devotes more attention to both the health problem of the patient and to health promotion and the consequences of the health problem for the quality of life.
For healthcare providers, the chronic care model means that patients are not only informed and guided, but that behavioral change and promotion of self-management should be a part of this. All healthcare professionals play a role in supporting the self-management of the patient. Health care professionals should work together in integrated care; this means continuous care in which the parts are well-tuned. The health care provider is supported in his decisions by guidelines and protocols that are evidence-based. In addition, there is a clinical decision support information system, in which patient data are collected and made accessible to health care providers and to the patient. The way in which a (multidisciplinary) team works together is changing. The society can make a profit out of this different method of self-management support, because it improves the quality of life of people with chronic health problems.
The chronic care model provides the interaction between the informed and activated patient and a prepared and proactive team of health care providers, combined with a health care system embedded in society. In the health care system, attention should be directed at self-management, the care process, decision-making, and clinical information systems. In the Chronic Care Model, productive interactions should result in improved outcomes.
5.4 Stepped Care
Stepped-care is a self-management approach. In stepped-care patients with chronic health problems are conceptualized at different levels, depending on the severity of the health problem and the complexity of care and treatment (Fig. 5.3). This ranges from people not identified or not seeking treatment, approximately 60% of the prevalent population, to people with more complex needs, approximately 5% of the prevalent population.
Stepped care and self-management
On the upper step of the pyramid, patients have complex health problems and they need complex care and treatment. For self-management, these patients need targeted self-management support, a patient-specific self-management plan, case management, and a multitude of methods to promote self-management. The self-management support is aimed at dealing with treatment, symptoms, medication, and behavioral changes that are desired so that the patient can cope well with the health problem, but also expands on a healthy lifestyle. On the third step of the pyramid, people need self-management support, using high-intensity interventions. The third level is about 6% of the prevalent population. On the second step in the pyramid, patients with a chronic health problem need mainstream care and treatment. These patients need to be supported in learning to run the desired self-management, in learning to deal with medication and expanding health and well-being. The second step consists of about 9% of the population. On the first step in the pyramid, people need early identification of signs and symptoms and active monitoring or referral and this is about 20% of the prevalent population. At step 0 of the pyramid, people are not (yet) identified as having a health problem or are (already) seeking treatment. The step 0 group is about 60% of the prevalent population. At any level in the pyramid, there may be patients with limited health skills.
5.5 Self-Management: Prerequisites
How can we make self-management effective? For effective self-management, the involvement of the patient is a prerequisite. In daily practice, patients vary in their involvement in self-management interventions. Some patients have little or no confidence in their own ability to self-manage their health problem, and are passive or see the medical treatment as the only effective way to treat their health problem. Other patients have a lot of confidence in their own ability to self-manage and energetically attempt to get started, ask for little support, and are autonomous in their self-management. It is important in patient education and when promoting self-management to take into account the differences that exist between patients.
An ever-increasing group of people are well informed and knowledgeable not only about all kinds of medical issues, but also around treatment and care. There is a growing medical interest of the patient. It is to be expected that patients in the future will make their needs known ever more clearly, will be more demanding, and will expect high-quality patient education and self-management support. Also, the development is already under way in which patients expect patient education and care to be evidence-based and effectiveness to be shown.
The increased medical technology and new diagnostic possibilities underline the importance of good education. The stay in the clinic is getting shorter and the education process is continued in the home situation. In the home, it can be easier to support social relations involved in the education and to learn behavioral changes that are needed for a longer period of time or that need to be sustained throughout life, such as in the case of chronic (psychiatric) health problems. These behavioral changes for improving self-management, can also be best taught as directly connecting to the patient’s living situation. Patient education will become more common, starting even before recording and treatment, because this increases the effectiveness. Before the patient will trust the lifestyle and the health advice of nursing professionals, he must have confidence in the nursing professionals themselves. This trust in the nursing professional is based on confidence in the experience of the nursing professional and the built-up trust in the relationship with the nursing professional.
For self-management, involvement of the patient is a prerequisite.
Implementing patient education and improving self-management improve patient satisfaction.
Patient-centered, effective patient education needs: tailoring, individualization, feedback and reward, facilitation, and participation.
For effective self-management, the patient: (1) should be able to monitor his own health status, and (2) should be able to make decisions based on signs and symptoms. The patient should learn these skills and incorporate the needed self-management behaviors so that he is able to cope well with his health problem. Also, the patient (3) should be able to deal with the consequences of the health problem, deal with negative emotions, so that he can continue to fulfill social roles. He should be able (4) to be the director of his own health and lifestyle, and finally the patient (5) should be able to deal with nursing professionals, other health care providers, and the health care system.
Patient-centered education leads to more satisfaction in patients. Patient-centered education has important accordance with effective patient education. Effective patient education should meet a number of conditions. A first condition is tailoring. By tailoring, we mean that the education must be “tailor-made,” that it must be tuned into the individual needs (social–cognitive determinants, intention, and behavior) of the individual patient. A second condition for patient-centered, effective patient education is individualization. Individualization means that there should be individual patient coaching in a direct contact between nursing professional and patient. A third condition for patient-centered, effective patient education is feedback and reward. The patient is given feedback by the nursing professional in accordance with the extent to which the goals of self-management have been earned and he is rewarded if the desired (part) effect is reached. A fourth condition of patient-centered, effective patient education is facilitation. Facilitation means that the patient is able to stick to the lifestyle and behavioral change. And finally, a fifth condition for patient-centered, effective patient education should be that there is participation. If the patient is offered a clear share in the communication and is invited to participate, this increases the probability that the goals that the nursing professional has established together with the patient will be achieved (Green and Kreuter 2005).
5.6 Barriers in Promoting Patients’ Self-Management: Provision of Information
Barriers in promoting self-management – provision of information:
Mutual exchange of information.
Handling negative sides of lifestyle and health advice.
Barriers to promoting self-management that the patient encounters are concerned with the provision of information and the communication between the nursing professional and the patient (Sect. 5.7). In the provision of information, important barriers are: (1) the mutual exchange of information, (2) participation, (3) taking decisions, and (4) handling negative sides of lifestyle and health advice.
What is the importance of exchanging information between the patient and the health professional (1)? Bad information and bad patient education, such as the timing and manner of informing the patient, are major obstacles for the patient. For example, it turned out that cancer patients were not well-informed after receiving information, and this occurs even at an advanced stage of the (chronic) disease. Another example: patients with rheumatic diseases, even if they say that they are well informed, often turn out to have a strong need to discuss alternative forms of treatment and unanswered questions.
Patients who are hesitant to ask questions, often do not know what questions they should ask. Or patients know what they should be doing, but have been unable to implement this. Patients who need to undergo (cataract) surgery experience a lot of fear, when they hear the diagnosis and back home, during preparation for the surgery in hospital, the day of the surgery, during the post-operative visits, and during follow-up visits after they come home again (Nijkamp et al. 2002).
In one study (Boot et al. 2005), patients were asked what the diagnosis of their health problem was. This study showed that 35% of asthmatics and 30% of the COPD patients could not tell the correct diagnosis. This study also showed that patients who had more knowledge about their health problem were less limited and had better self-management.
If the patient feels that he is not able to handle the situation, this is clearly related to both the quality of the information and to the preparation for treatment or when undergoing medical research. Informing and preparing the patient then often has a lack of systematic intent. The information is not sufficient based on the questions and needs of the patient, or there is not enough recognition that anxiety makes it impossible to record and process information (Breemhaar 1996).
Is this also true for patients who have cancer? Research showed that cancer patients want to hear all the available information about their health status, both the positive and the negative, but this was often not provided. This seems to arise from the wrong view of health care providers about their needs. The information needs of cancer patients are fulfilled in the period just before the medical treatment (diagnostic phase), during the treatment (in hospital and after discharge), and after treatment (recovery, terminal stage) (Mesters et al. 2001). Greater information needs of the patient often appear to go together with anxious and depressed feelings; the reverse is also possible: that the patient who is informed, worries, but needs more information. Also, there may be a relationship between feelings of depression and anxiety and cognitive functioning of the patient. When there are feelings of anxiety and depression, the information may be less well processed by the patient (Mesters et al. 2001).
In a survey by McWilliam et al. (2000) about providing information to patients with breast cancer, it was shown that both the relationship and the provision of information were experienced in a positive way, if the patient felt that the contact was aimed at developing a collaborative relationship. The relationship and the provision of information were experienced in a negative way, if no cooperative relationship developed, if doctors offered false reassurance about the prognosis of cancer, if they gave badly timed information, and if they offered no hope for the future. The patients in this study felt more vulnerable in such a relationship and were unsure about the fact that they had no control over their health situation.
Patients became upset by the negative attitude of the health professional, if the attitude was not patient-oriented, if no specific information was given, when it was not possible to express feelings, when questions could not be asked, and when there was no space given to decide. Informing the patient at an incorrect, inconvenient time had a daunting effect. The same applied to an excess of information, or getting information without hope, or without a positive view of an improvement. Patients felt lonely and not supported; not capable of positioning their health problem in their lives. When patients experienced no control over their health situation, they searched for other health care providers to restore the balance. The feelings of vulnerability became stronger, when the professional frequently stressed that nothing was wrong or that it would all work out. Building a positive relationship and sharing information were undermined. This led to feelings of guilt and anger as the unfavorable diagnosis in retrospect was shown to be inevitable (McWilliam et al. 2000).
What is the importance of participation (2)? Having a positive interpersonal patient–health professional relationship is a condition for optimal care. The input of the communication should be formed by the combination of a patient-centered and professional-centered approach. The patient leads the communication on matters in which he is the expert, such as symptoms, concerns, and fears. The professional has her own expertise such as care, treatment, and details of the condition. In a positive interpersonal relationship, the patient and the professional cooperate with each other because they each have their own expertise, and combined, the expertise gives a complete picture of the patient’s health problem. In such a positive interpersonal relationship, mutual participation can take place.
This exchange of information is necessary. For the patient, it is important to know, to understand, to be known, and to be understood. For example, the patient wants to know what is going on, wants to understand where the pain is coming from, wants his pain complaints to be taken seriously, and that there is understanding of the influence of pain on his functioning. For the health care provider, it is important to make a diagnosis and treatment and care plan; the health care provider wants this to be evidence-based with the objective of delivering good-quality care.
Is it easy for health professionals to assess the information needs of the patient? In general, health care providers do not judge the information needs of a patient very well. Although most patients want as much relevant information as possible, this information need is often underestimated. More than 90% of patients with cancer perceive the need to receive all available information about the health problem, both good and bad news. Patients define their information needs in terms of personal relevant information. For example, will I completely recover? How much pain will I have? Health care providers access the information needs of patients as a need for objective information. Thus, they inform the patient about the type of health problem, the stage of the disease, and the type of treatment. Giving the patient objective, professional information gives the health care provider the feeling that he has informed the patient well. Receiving this objective information gives the patient the feeling that it is not about him personally, or that it is mainly about other patients, or that he has heard nothing new.
Are there limits to the active, participatory role for the patient’s self-management? Yes, there are limits, not every patient is able to actively manage his health problem and not every patient is able to handle his self-management as an “electing” consumer (Delnoij 2012).
Is it easy for patients to assess their own information needs? Many patients who visit a health professional have an existing opinion, or go with clearly formed ideas. Many patients acquire medical knowledge by talking to others, via the media, and the internet. It is no longer the case that health professionals gain the patient’s confidence because they possess the authority in health information. From the patients’ viewpoint, health professionals are less frequently seen as the guardians of health and the solution to their health problems.
Patients need to be increasingly involved in care and treatment, and to have their own decisive role to play. The patient visits the health professional with an idea of what is wrong with his health, why this has happened, and what he expects of the health professional. Because the patient starts the consultation having clear expectations, tensions can soon arise during the consultation. These expectations of the patient may differ from what the health professional is picking up in the conversation. The health professional may see other causes of the presented health problem, what the causes may be and what the “solution” is. Making this disclosure may not reflect what the patient has introduced. It is therefore important, to assess the patient’s “agenda” and to clarify this at the start of the consultation. By matching this, it is clear for both the patient and the health professional what the conversation will be about.
The symptoms reported by the patient should play a central role for the health professional in understanding the disease and associated behavior of the patient. Even if they have the same health problem and the same symptom pattern, patients all have different expectations of what is a desirable option for handling the problem. The skill of a health professional in giving information in a clear and concise way is important, but information alone is rarely sufficient. It is important to match the information to the self-reported symptoms and to the extent to which the patient understands his (health) problem. Although patients need to be well informed before they are able to follow the recommendations, the chance of them following up the recommendations is greater if this is based on personally relevant information. Contrary to what is often expected, it turns out that patients who are better informed experience fewer problems. Information, therefore, has positive effects, but the one-off provision of information has little effect as a rule. Health professionals should continue during successive consultations to check if the patient understands and interprets his individual health status correctly. Also, patients should be encouraged to ask questions: what do you think of my proposal? Is this a good idea? If it is unclear or are there other affairs that you would like to talk about (with regard to the health problem)? Can you tell in your own words what I just said? The consultation is based on mutual participation, if the personal information is relevant to the patient and the patient is invited to a play a participatory role.
True or not true? Compared with 30 years ago, are patients now much more assertive? “Contrary to expectations, patients are less active in communicating within the health care system, they present fewer questions, they talk less often and they talk less often about the issues that concern them.” (Bensing 2006 in Delnoij 2012)
Does the mutual participation model improve communication with patients? The starting point implementing the mutual participation model is the individual need of the patient. In this model attention is given to negotiating with regard to the health advice. How does this work? The patient has his own area of expertise; these are his psychosocial needs. The health professional has her own area of expertise: about nursing, medical knowledge, and psychosocial skills. By properly combining the areas of expertise, the route can be negotiated to get started with the health problem. In joint consultation, the patient determines together with the nursing professional how he should approach the health problem. If the route to approaching the health problem to go is provided, the patient should learn to follow the lifestyle and health advice. If a patient does not understand why he is supposed to follow lifestyle or health advice, he is not able to learn to follow those recommendations. This may be the case if the health professional has no insight into the problems and if the patient experiences barriers following lifestyle and health advice.
The mutual participation model does not diminish the responsibility of the health professional, but the model simply changes the focus of that responsibility. If the patient’s responsibility is highlighted too heavily by the nursing professional, then this has the opposite effect. This will give the patient the feeling that he stands alone. If a patient has the feeling he stands alone, he finds the experience of the health professional of little value and there is a chance that he will stop the treatment.
What is the importance of making decisions together, the patient and the health professional (3)? One of the goals of communication between the patient and the nursing professional is to make decisions about care and treatment (see Sect. 5.23 Informed consent). Not every patient likes to be involved in making decisions that are strongly linked to care and treatment. The reason for this is that the patient feels responsible for the treatment results. Above all, if the disease returns, the patient might feel that he had made the wrong choice.
What is the importance of negative consequences in making decisions (4)? The same is true but to a lesser extent with regard to making decisions about whether to follow up lifestyle and health advice. Making a decision may mean for the patient that he accepts the negative consequences in the short term to reach the long-term goals. However, in some cases, the consequences in the short-term weigh so heavy, that it seems to be impossible to reach the long-term goals. The immediate results may also be not enough for the patient to continue motivating his decision. This is the case, for example, if the patient experiences side effects of treatment.
Patients can respond in a number of ways, depending on the consequences that following lifestyle and health opinions have (Falvo 2004). First, the patient may ignore the health advice and maintain the current (undesirable) behavior pattern, regardless of the consequences for his health and well-being. Second, the patient may give the nursing professional the impression that he has decided to follow (part of) the health advice, but does not do this. Often along with excuse behavior. For example: my partner no longer reminds me to use my medicines, or; I am to busy. Third, the patient may also adopt a passive role and take over the health advice without asking questions. By doing this, the patient puts the decision entirely in the hands of the nursing professional and he is confident that it is good advice. Fourth, the patient may balance the pros and cons and based on this decides whether to follow the precepts. In this case, the patient searches for additional information or examination, sometimes a second opinion, and bases his decision on the information collected. This pattern of decision-making by weighing up the pros and cons and information collection probably leads to the best decisions. Finally, the patient may perceive the health advice as threatening or as an impossible experience, that the opposite opinion is going to work. You will find that the patient often starts to actively seek other solutions to its problems.
5.7 Barriers in Promoting Patients’ Self-Management: Communication Between the Patient and the Nursing Professional
Barriers to promoting self-management – communication:
Instrumental and affective behavior.
Verbal behavior versus nonverbal behavior.
Privacy, sensitivity of information.
In addition to the provision of information, specific communicative behavior plays an important role in communicating between the nursing professional and the patient. Important barriers in promoting self-management are instrumental versus affective behavior (1), verbal and nonverbal behavior (2), privacy, sensitivity of information (3), and medical jargon (4).
What is the importance of instrumental and affective behavior (1)? Instrumental or task-oriented behavior is mainly cognitive in nature. Using instrumental or task-oriented behavior is directed at providing information, asking questions, discussing side effects or the side effects of treatment, and technical aspects of the health problem. This behavior is fairly business-like and consists of technical skills that are used to reach the solution of a problem. The behavior gives the nursing professional an “expert level.” Affective behavior is mainly emotional by nature and this belongs to the emotional domain. Affective behavior is about openness and honesty, showing empathy and giving confirmation. It is empathic behavior and skills are used to develop a positive relationship with the patient and maintain the relationship.
In many cases, nursing professionals and doctors contribute 60% of the communication with the patient, the patient contributes 40% of the dialogue. Nursing professionals and doctors take up 25% of the dialogue by asking questions and 35% is filled with giving information and advice. Closed questions may be asked, especially in the assessment phase. The extent to which the professional gives information is very much linked to the extent to which the patient asks questions. Women ask more questions and receive more information. Patients also seem bashful about asking questions. Possibly, a longer lasting interaction between the professional and the patient is necessary to allow information needs to evolve. Patients who ask many questions, express their concerns, and are fearful receive more information than patients in whom this is not the case. Topics that have a relationship with the emotional state of the patient are least discussed.
Different types of patients, or not? Some patients focus on outcomes, on the effects of the care, and for that reason go to another healthcare provider. Some patients focus on trust and a good healthcare provider–patient relationship. If people get sick and dependent, they fall back on trust rather than on outcomes (Groenewoud 2008 in: Delnoij 2012).
This is also true for young, relatively highly educated and empowered patients (Van Empel 2011 in Delnoij 2012).
If the nursing professional shows nervous excitement, is tense, or shows little self-confidence while informing, this may cause the patient not to take the information seriously or place question marks as regards the accuracy of the information. Informing the patient in a non-interested, routine way, can also have negative effects. The patient may perceive this as disinterest or conclude that his specific problems and concerns are not covered by the story. Patients may see the relationship as being less valuable, or get demotivated about implementing the recommendations. In addition, the patient may see it as his own responsibility to change the recommendations so that they are more appropriate to his own needs.
What is the importance of verbal versus nonverbal behavior (2)? In addition to instrumental versus affective behavior, verbal versus nonverbal behavior is an important element of communicative behavior. The verbal behavior of the patient may facilitate self-management, and inviting the patient to participate actively in the communication has a positive effect on the patient’s self-management. Asking open questions can promote cooperation between the nursing professional and patient. For example: “Can you tell me what you understand about your condition/disease/problem? Can you tell me how you feel now that I have told you this?” In addition, reflective statements made by the nursing professional encourage the patient to continue to participate in the communication. For example: “Now we have discussed that it would be a good idea if you could start moving more, how would you describe this motion advice?” Finally, confrontational statements can also make a positive contribution to the communication. It is possible that the patient may not be aware of certain verbal or nonverbal expressions. The nursing professional may then say for example: “Now I hear you say that you are willing to go and move more, but is it true that I see that you are still uncomfortable with it?” Naming of verbal and nonverbal expressions by the nursing professional can facilitate the communication process and improve self-management.
The patient is very sensitive to the nonverbal communication of the health care professional. The nonverbal behavior of the professional delivers unintended messages “to pass through” to the patient. The patient pays attention to inconsistencies between the verbal behavior of the professional (what is said) and the nonverbal communication. Fifty-five percent of the nonverbal behavior of the professional consists of visual elements, such as eye contact and body posture. Twenty-five percent of the nonverbal behavior of the professional is transmitted by the intonation of the voice. Approximately 7% of the emotional communication is expressed verbally by the professional. The professional’s hastiness or inability to make eye contact may be interpreted by the patient as disinterest. The nonverbal behavior brings about in a subtle way the beliefs and emotions of the nursing professional to the patient.
The patient’s nonverbal behavior gives an indication of his emotional state, any discomfort, or simply the need to receive more information. The nursing professional may be paying attention to the patient’s nonverbal expressions, and may determine more accurately whether her interpretation of the patient’s verbal behavior is correct. If there seems to be a discrepancy between the patient’s verbal and nonverbal behavior, the nursing professional would need to collect further information to correctly interpret the patient’s message. When the patient’s verbal and nonverbal communication are in sync, then this is an indication that there is progress in the communication. If the discrepancy between the verbal and nonverbal behavior is not resolved, or if the interpretation of the nonverbal behavior is not checked, this can have a significant impact on the working relationship and the ultimate effectiveness of self-management.
What is the importance of privacy (3)? The privacy sensitivity of information is also an element that affects communication. It is often inevitable for nursing professionals to ask their patients personal and intimate questions, but this may be highly problematic for the patient. The threat to privacy is not only in providing an insight into personal, intimate feelings and fears, but also physical exposure, as is necessary in many medical and nursing situations.
What is the importance of medical jargon (4)? An element that also affects the communication is the use of language by the nursing professional and the patient. Nursing professionals use both technical jargon as everyday parlance and exchange the two forms. Patients tend to be less or not familiar with medical terms and technical jargon, and this can pose a problem for the patient. Communication may become complicated if medical terms are not or only partly understood, or when the patient uses medical language to join the professional and does not (exactly) know what it means. As a nursing professional, you can avoid using technical jargon and technical medical language, but another solution is more obvious. In promoting self-management, it may be important for the patient to learn important medical terms. It would be better if health professionals were to give lifestyle or health advice in layman’s terms and supplement this by using technical jargon. If you speak only in layman’s terms, the patient may perceive this as paternalistic communication. By only using layman’s terms, you as a nursing professional also inadvertently communicate that patients with a lower level of education would not be able to understand the different statements about their state of health. This assumption is incorrect. Also, it is incorrect to assume that more highly educated people can understand medical terminology. Misunderstandings can be prevented by clarifying and explaining medical terms, which can be simplified by using analogies, for example, the heart as a pump.
How important is it to be in control (5)? The extent to which the health care provider or the patient has control over the conversation affects the communicative behavior. When the nursing professional has a lot of control over the conversation as they ask a lot of questions and interrupt the patient, the patient experiences the professional as being dominant; the nursing professional decides what is best for the patient. The opposite takes place in the patient-centered relationship, in which there is more equality. The patient has more control over the conversation if he has more knowledge about his own health problem, by his understanding of his medical problems, about side effects, by his sense of control over uncertainties; the nursing professional will be in control of the medical information.
Patient satisfaction and patient-centered relationship. A review showed that in patients who had suffered a stroke, by consultations that asked about the active involvement of the patient, the cerebrovascular accident-related knowledge was increased, depressive symptoms were improved, and the patient satisfaction had increased (Smith et al. 2008 in: Coster and Norman 2009).
5.8 Effects of Promoting Self-Management: Patient Satisfaction
Effects of promoting self-management:
Self-management improves: patient satisfaction; concordance; the understanding and remembering; patient well-being; shared decision-making; and improved self-management.
Promoting the patient’s self-management is of central importance in nursing care, and barriers in communication are shown in information and communication. But what is effective communicative behavior of nursing professionals and what results or patient outcomes can be achieved? Important patient outcomes or effects of the promotion and support of patients’ self-management are that nursing professionals can improve patient satisfaction, improve concordance and handle noncompliance, improve patients’ understanding and remembering, improve patients’ well-being, and very importantly, improve shared decision-making and the self-management behavior of the patient.
Patient satisfaction is an important result of promoting and supporting patients’ self-management. Communication is shown to be the least satisfying aspect of the encounter between the nursing professional and the patient, and about a third of patients are unhappy about the communication.
Effects of promoting self-management – patient satisfaction:
Necessary for promoting and supporting self-management of the patient are: positive affective, nonverbal behavior and positive verbal behavior.
Patient satisfaction is strongly influenced by the positive affective, nonverbal behavior of the nursing professional. Positive affective, nonverbal behavior is making eye contact with and showing an interest in the patient, in his health problem, and in his social conditions and circumstances. The outcome is also influenced by the positive verbal behavior of the nursing professional. Positive verbal behavior is using the (first) name of the patient, to create an atmosphere of privacy, to sit down with each other as you speak, and by not interrupting the patient, discussing the prospects with regard to the treatment and the potential for dismissal. All these factors are positively related to the patient’s satisfaction.
Forty percent of patients have low patient satisfaction and important causes of this are in underestimating their information and education needs and showing dominant behavior by the health care provider in communication. For example, the satisfaction of cancer patients and the degree to which they assess their quality of life can be predicted from the affective relationship with their health care professional (Ong et al. 2000). This means that an unfavorable affective relationship has an adverse effect on patient satisfaction and quality of life.
Self-regulation 1. Patients with chronic health problems regulate their own drug use. It is not that they are not following health advice, but they adapt the medication use so that it fits well with their self-image and lifestyle (Marks et al. 2005).
Brighter image? Even if patients indicate that they do not use all their medication, does this correspond to their actual intake? No, patients overestimate their medication intake. But also, even part adherence may improve their health situation.
Six patterns of medication use can be distinguished for patients with chronic health problems: 1 out of 6 patients is a close approximation to “perfect adherence” and they use all their medication. 1out of 6 patients takes all the medication as agreed, but with irregular timing. 1 out of 6 misses a single dose during the day and the timing is sometimes incorrect. 1 out of 6 patients take “drug holidays” 3–14 times a year. 1 out of 6 patients take a “drug holiday” monthly or even more frequently. Finally, 1 out of 6 patients takes little or no medication, but gives the impression that their intake is correct as agreed (Budenz 2009).
Is it easy to determine medication use? Most patients with glaucoma overestimate the degree to which they take medicines as agreed and care providers are not able to determine which patients do and which do not to stick to the appointments (Budenz 2009).
5.9 Effects of Promoting Self-Management: Concordance
Effects of promoting self-management – concordance:
Compliance and noncompliance.
Adherence and nonadherence.
To promote and support the patient’s self-management, nursing professionals give lifestyle and health advice. The assumption here is that if the patient follows the lifestyle or health advice, self-management is enhanced and the patient is better able to deal with his health problem. However, many patients do not follow lifestyle and health advice. In the past, common terms for not following lifestyle and health advice and specifically for not taking prescription medicines was therapy infidelity or noncompliance. These terms have been replaced by nonadherence, but this does not cover the concept fully either.
What problems are meant by the concepts of therapy infidelity, noncompliance, and nonadherence? The issues may be different, for example, taking painkillers for a reason other than for which it is intended, taking it a higher or lower dose, not complying with the maximum duration of use, or not taking the medicine at all. In principle, the terms therapy infidelity, noncompliance, and nonadherence apply to all medical and nursing instructions, advice, recommendations, etc. A patient is called compliant, when that patient “follows up” recommendations, opinions, and instructions.
The extent to which patients are noncompliant or nonadherent is unclear, but a review (Falvo 2004) shows that this is somewhere between 50 and 75%. Regarding drug use, it is known that 60% of patients cannot identify their own medication, 30–50% ignore or do not follow-up instructions, 14–21% do not adhere to the advice, and 12–20% take medication that has been prescribed to others. About 50% of the medication that is prescribed to patients with chronic health problems is not taken in accordance with directions and this has negative health effects, leading to hospitalization and an increase in morbidity and mortality (Viswanathan et al. 2012). This systematic review showed that the self-management around asthma medication and the case management around depression need attention.
Patient compliance is higher in short-term care and treatment than in long-term care and treatment, and is more difficult if it is a chronic health problem, if lifestyle changes are desired, and if the treatment is complex, far-reaching, and inconvenient. The reasons for therapy infidelity are simply forgetting, changes in the daily routine, depression, uncertainty about the effectiveness of the treatment, lack of knowledge about the consequences of therapy infidelity, complexity, little social support, economic problems, and side effects (Lerman 2005). Health and lifestyle advice is often complex, and even though these recommendations come from guidelines, many patients are unable to form long-term opinions.
Socio-demographic characteristics of patients, such as education and age, are not the cause of therapy infidelity. According to Marks et al. (2005), most patients do not completely follow specific medical or health-oriented advice. Patient compliance is a dynamic process and the patient does not exhibit the same degree of adherence every day (Lerman 2005). Simplifying health and lifestyle advice can favorably affect patient compliance. Also, as side effects or negative effects are limited, this has a beneficial effect on the patient’s compliance.
Concordance is if the patient together with the nursing professional makes arrangements regarding self-management and draws up a plan of what he is (or is not) going to do. It is a shared decision-making process.
Nonconcordance is when the patient fails to fulfill his appointments with the nursing professional.
Characteristics of the health problem.
Characteristics of the treatment.
Characteristics of the context of the health care and control.
What is concordance? Concordance is a relatively new concept that indicates that there is agreement between the nursing professional and the patient about how the lifestyle or health advice is going to be carried out by the patient. Concordance is based on the concept of shared decision-making and includes a joint discussion about the advantages and disadvantages of the lifestyle or health advice, looking at what it means for the patients’ social opinion and social conditions, and see what kind of skills are needed. To promote the patient’s self-management, the patient is invited to participate and to take an active role. Concordance calls for the drafting of a plan in which the nursing professional and the patient agree what, how, and when the lifestyle or health advice is going to be carried out. For example, drug x is taken at breakfast time with water, except if the patient does sports in the morning, medicine x is taken for lunch with water. The plan, drawn up in consultation, should be the result of a shared decision-making process (Elwyn et al. 2003). There is concordance if the patient together with the nursing professional made the arrangement and in a plan, they have stated what he is going to do; if the patient fails to fulfill his appointments with the nursing professional, this is called nonconcordance.
Self-regulation 2. Patients with chronic health problems are aware of the benefits that good medicine use offers, but it also reminds them that they have a health problem. By reducing their drug use, they get the feeling that they are getting better (Marks et al. 2005).
For the self-management of patients with asthma: patients who have their asthma symptoms monitored and have learned how to administer their medication accordingly, achieve the same results as doctors. The patients remain under regular control (Powel and Gibson 2002 in: Coster and Norman 2009). This combination of monitoring and medication matching is also effective in children (Wolf 2002 in: Coster and Norman 2009).
Compliance. Of patients with insulin-dependent diabetes, 65% are adherent and follow the recommendation on insulin use; 35% are non-adherent, skip insulin doses, and use lower doses than recommended (Lerman 2005).
First, nonconcordance may be about not respecting agreements. Medical problems that could be easily solved can be made worse by the lack of early medical intervention or follow-up appointments. Absence of respect for agreements can obstruct the continuation of care and treatment. Medical problems can worsen and lead to complications or other or more serious health problems, for example, in the case of anti-hypertensives, it can lead to unnecessary complications and premature mortality.
Second, nonconcordance may also be about the non-adherence to lifestyle and health advice, whereas it is in fact an important part of treatment. Lifestyle and health advice are among the most difficult to follow up of the recommendations for self-management, but not following lifestyle and health advice can have serious consequences. For example, monitoring the advice to move more intensively has a beneficial effect on the blood sugar levels and improves insulin health in the body.
Third, nonconcordance may be about not following aspects of the treatment. For example, the non-use of related resources such as support stockings to support the blood circulation and fluid build-up in the legs, or irregularly changing bandages.
Finally, nonconcordance may be about not following advice on preventive health activities, for example, dental care.
Non-adherence to the desired lifestyle and health advice is a persistent problem. This not only has implications for the health of the patient, but also for the effective use of available resources. If a patient is being treated, but the lifestyle and health advice are not followed, this is an inefficient use of health care. Not following the lifestyle and health advice can result in a worsening of the patient’s health situation. It can also lead to complications and related illness or mortality. Self-management plays an important role in disease prevention. If patients with chronic health problems, such as heart problems and high blood pressure, do perform their self-management according to the lifestyle and health advice, this allows them to lead an active and productive life and this results in a decrease in morbidity. Health care professionals underestimate the extent of noncompliance; it can cause that patients to undergo unnecessary additional treatments and research, needless or unnecessarily prescribed medication, or receiving more health and lifestyle advice.
5.9.1 Nonconcordance: Characteristics
Nursing professionals overestimate the extent to which patients adhere to the “agreed” recommendations, opinions, instructions, and rules of conduct. They may have an incorrect image of patients who are noncompliant. Nursing professionals often assume that these are the less well-educated patients and patients with a lower socio-economic status, but this assumption is not supported by research. There is no known connection between adherence and age, gender, social form, education level, the number of persons in the household or social class. But there is a connection with a number of social and personal characteristics.
Nonconcordance: is social support a characteristic? In general, patients who are noncompliant often have less or no social support and they live more socially isolated compared with patients who are compliant. For example, in patients with diabetes it was found that following recommendations was associated with higher levels of social support. Patients coming from less stable families follow opinions less often. Also, emotional instability or mental health problems have an impact on therapy infidelity. If the proposed medication regime is keeping in with the views of the patient, he is more likely to use the medicines in accordance with recommendations. It has also been shown that lifestyle and health opinions are not as well adhered to if the advice has a greater impact on the habits of the patient, or on certain aspects of his life.
Nonconcordance: is the complexity of the recommendation a characteristic? It is clear from studies that the less complicated the lifestyle or health advice is, the greater the degree of compliance. If the patient needs to carry out different lifestyle- and health advice at the same time, this could pose problems for him. The more recommendations, acts or medications that are prescribed, the more unfavorable the effect is on the patient’s self-management. Self-management is also under pressure if it should be sustained over a long period of time. In addition to the number of recommendations and the length of the period, unpleasant side-effects of the recommendation or the side-effects of a medicine can have an adverse impact on self-management. This results in the patient not performing the lifestyle and health recommendations and the desired (health) behavior does not continue. In addition, it may turn out that the change of behavior is so complex, so time consuming or unpleasant, that the patient quits.
Self-regulation 3. Patients with chronic health problems regulate their own drug use. Side-effects are a reason why the medication is not used in accordance with directions. But although patients say that the physical side-effects are the reason for this decision, it is the social side-effects that affect behavior. If the medication bothers the patient during his social activities, the patient is more likely to reduce drug use (Marks et al. 2005).
Nonconcordance: are psycho-social factors a characteristic? Each patient is an individual with private comments, experiences, and motives that influence behavior. In addition to the patient’s knowledge, a multitude of psychosocial factors have an impact on the ability and willingness to follow lifestyle and health advice. Psychosocial factors that come into play are the views of the patient, his personal pros and cons associated with the follow-up of opinions, (lack of) social support from the environment, and his social and financial circumstances. In addition to psychosocial factors, symptoms the patient experiences play a role. Symptoms that are associated with a particular health problem may have different reactions in the patient.
Non-concordance: is the kind of health problem a characteristic, or symptoms related to the health problem? The self-management of the patient is also affected by previous experience of the patient and his expectations. Each patient has their own view on illness and health and health beliefs influence self-management. Health views can obstruct the performance of lifestyle and health advice, for example, if the recommendation is seen to be inappropriate, or if the advice conflicts with the health beliefs of the patient. Also, recommendations can be at odds with socio-cultural and ethnic folk wisdom about illness and treatment. Another factor that may affect self-management, is the acceptance of (the severity of) the health problem. The influence of the social environment also plays a role.
There is a link between compliance in the sense of carrying out lifestyle and health advice and the severity of the health problem/visibility of the symptoms. Patients with asymptomatic chronic health problems are more frequently noncompliant. Patients are more likely to be compliant in a treatment with a favorable prognosis if the presence of symptoms is clearer and undesirable. If the prognosis is less favorable, this reduces patient compliance. For example, in patients with cancer who have a poor prognosis, patient compliance is low.
Nonconcordance: are social factors a characteristic? The patient may not follow health or lifestyle recommendations that conflict with his individual insights, and that are at odds with the views of people from his social environment. The family or peer group of the patient has a great influence on his desire and willingness to take on and implement recommendations. The attitude of the partner regarding the medication use is the most important explanatory factor for compliance. For example, the patient’s compliance increases if family members help the patient remember to take medication and are generally helpful in this regard. This practical social support plays an important role in the patient’s compliance. Also, compliance is higher in families with close ties and lower in families where there are conflicts. Successful self-management of the patient also improves the cohesion and functioning of his social network (Ryan 2009).
Non-concordance: is treatment a characteristic? Also, characteristics of the treatment affect the running of lifestyle and health advice. If the prescribed treatment is complex, this decreases the chance of the recommendations being fully followed. The patient may, in his attempts to handle the complex prescribed treatment, forget, ignore or become confused, and make other choices. If recommendations are comprehensive and complex, the chances of the patient remembering them are also smaller. For example, adherence decreases with an increase in the number of medicines that the patient has been prescribed. Compliance also decreases, up to about 50%, if the recommendation has to be sustained over a longer period of time, regardless of the health problem or the health care setting. It is assumed that therapy infidelity is linked to the absence of symptoms. This is not so much about the length of time that the adapted lifestyle should be sustained. The absence of symptoms demotivates the patient and if the patient does not experience symptoms, he lacks feedback on the usefulness of the medication, and his motivation to behave in a compliant manner is undermined.
There is evidence that if a patient has to follow a particular therapy long-term, and there is a regular follow-up by the nursing professional, the compliance increases. Inadequate monitoring of the patient by nursing professionals and the absence of continuity in care and treatment have an adverse effect on adherence to lifestyle and health advice. However, a long wait between the appointment and finally the consultation, the timing of the reference, the lack of individual possibilities to make arrangements, or a lack of cooperation and consultation among health care services also have an unfavorable effect on lifestyle and health advice. Furthermore, the type of treatment affects the extent to which the patient is compliant. For example, some patients find inhalation medications unpleasant, and may thereby not be able to use the correct inhalation procedure. How the patient feels when following a specific procedure or treatment affects the degree of compliance.
Nonconcordance, is the context of healthcare a characteristic? The patient has the right to determine his own health. If this right is threatened, the patient responds to this by trying to restore the control and prevent him losing his freedom. If the treatment is intensive and complex, this threatens the patient’s freedom and sense of control. Noncompliance can then be interpreted as offering resistance to medical dominance. The patient wants to restore self-control. Not all patients feel this as a strong need; some patients accept medical authority more easily than others. To gain control, the patient should assess whether he is able to perform the desired behavior. The patient must be convinced that the desired behavior is workable and feasible. If the patient feels in control, there is a chance that he will commit and change his behavior. If the patient does not feel in control, he has the tendency to stay in that situation. Kok et al. (1997) formulate it as follows: “a certain lack of grip on the own situation leads to control-increasing, active behavior, while a large lack of grip on that situation leads to passivity and helplessness. People who are helpless, can hardly be motivated to other behavior.”
An increased sense of control emerges as it is explained to the patient and taught how he can deal specifically with problematic side-effects of research and treatment.
Managing identity by being compliant? Compliance has a strong link with the need of a patient to have control over the health problem. A study of compliance in patients with COPD/asthma revealed that the daily use of the (curative and prophylactic) inhaler was related to how the patient saw himself and to the attitude of the patient in relation to the health problem. The extent to which the patient is compliant is not only entwined with the nature of the health problem, but also with the definition of the identity of the patient. Compliance is not just a way of managing the symptoms themselves, but is also a way of managing one’s own identity (Marks et al. 2005).
Self-regulation 4. Patients with chronic health problems appear not to follow standardized medical instructions, but to adapt them so that they meet their private, personal needs (Marks et al. 2005).
Nonconcordance: what about the nursing professional? Health professionals may experience resistance when responding to certain characteristics of nonconcordance such as psychosocial factors. They may have the opinion that to elaborate on certain aspects is not very practical, that it is time-consuming, but also, nursing professionals may be unaware of such factors.
The better you know as a nursing professional how to promote and support self-management, the more likely it is that the patient will be able to carry out the recommendations for self-management. An important starting point for nursing care is based on the patient and his needs, to promote the patient’s self-management. Knowing what is best for the patient has affected negatively the relationship between the nursing professional and the patient for years. Long ago, we had authoritarian doctors who were supposed to lead the care and start treatment, and make all the decisions in the interests of the patient. This relationship has given way to a collaborative professional relationship in which a process of shared-decision making and working on concordance should be the focus for optimal self-management of the patient. The reason for this paradigm shift to patient-focused nursing care is located in the belief in patients and in nursing professionals, that for quality of care the patient should be the starting point. This means patient-centered care with ample attention being given to promoting self-management and patient education; this is now seen as the way to quality care (Bensing et al. 2000). By offering high-quality care, and promoting and supporting the patient’s self-management, the nursing professional is able to optimize the patient’s health and well-being.
Is targeted patient education needed? There is a dramatic increase in the number of people with type 2 diabetes, maybe even an epidemic. The cornerstone of diabetes care is reconciling the patient’s self-management with the professional treatment advice from the guidelines. But this may be complicated for patients. When it comes to self-management, a third to a half of these patients turned out to have inadequate blood sugar checks. As a result, macro- and microvascular complications such as coronary heart disease, stroke, blindness, and need for amputations, in addition to a reduced quality of life and emotional concerns. The complicated but highly desired self-management requires targeted patient education in people with type 2 diabetes.
5.10 Effects of Promoting Self-Management: Understanding and Remembering
Effects of promoting self-management – understanding and remembering:
Amount of time, distance.
Primacy and recency effect.
Relevance for the patient, patient-focused.
An examined effect of promoting self-management is the extent to which the patient can remember and understand the lifestyle and health advice. The extent to which patients understand the information that has been processed in lifestyle- and health advice varies between 10 and 50%. For example, understanding is how a patient understands the prognosis of his illness. How much the patient understands, is very much linked to the amount of time that is spent on providing the information. Physical distance between the patient and the nursing professional is also of importance. If this distance between the professional and the patient is small, then the patient understands and remembers better, for example, when the nursing professional is leaning forward and is making focused eye contact.
In addition to understanding information, information should be remembered by the patient. The extent to which the patient remembers varies between 40 and 80%, and this depends mainly on the amount of information. To recall lifestyle and health advice, the primacy or recency effect is important. What the professional says first or last is best remembered by the patient. On this basis, the professional should give the most important information first. For example, you should give the patient the bad news about an unfavorable prognosis at the beginning of the session. Or, at the end of the session, the core of your lifestyle or health advice should be repeated. If information is shocking for the patient, then no further information should be given. For example, when diagnosed with cancer, the patient will all be confuscated by the enormity of this news. If you continue to give further information after an unfavorable message, then the patient is not likely to process this information. This feeling of not being informed induces negative feelings in the patient, such as uncertainty and fear.
The patient remembers after the conversation, about half of the opinions, recommendations, statements or information. This is because too much information is given at one time. Anxiety, available (medical) knowledge, and the intelligence level of the patient all play a role in the ability to remember. For effective patient education, it is important that the nursing professional is comprehensible, chooses the right words, and provides sufficient relevant information. Nursing professionals should also take into account the patient’s emotional and intellectual capacity. Setting a framework for every conversation may also give the patient something to get a handle on. For example: “First I’m going to explain to you that … We’ll discuss what treatment you can expect … Then, we start with…” Information on paper can complement the oral communication forms of and remembering and understanding, but should never replace verbal communication. The excessive use of paper information can have the reverse effect (Falvo 2004).
The extent to which the patient remembers and understands lifestyle and health advice is influenced by selective perception. Selective perception means that the patient picks up only those parts from the message that are important to him. The patient selects parts of the message in line with his expectations, knowledge, and social standards. After this, the patient interprets the message and colors it with his own experiences and views. Information that is perceived as meaningless is quickly forgotten. A part of the information is forgotten after a short time, another part is remembered, but only if the long-term memory is activated by repetition. Information that is consistent with existing knowledge, is better remembered by the patient. It is important that the nursing professional knows how the information is experienced by the patient. The patient always needs time to gain an overview of the content of the message, by speaking with others, to reflect, and to consult other experts. As a rule, there will not be a direct effect of the patient education. By coming back later in the session and inviting the patient to repeat the information, the nursing professional can play a supporting role and improve understanding and recall.
The extent to which the patient remembers and understands lifestyle and health advices is influenced by the extent to which it evokes fear. The effectiveness of promoting self-management is influenced by the patient’s fear. Fearful patients have more trouble remembering education. On the other hand, if anxious patients are informed about the nature, cause, treatment options, and prognosis of the health problem, this may lead to a decrease in anxiety and in stress reduction. If patients can openly talk about their fears, they are less often included in a hospital? or is it: transferred to a hospital? Patients often express their fears indirectly, between the lines. In general, patients are ambivalent in expressing their fears: on the one hand, the patient wants to talk about his concerns, but on the other hand, he fears that his worst fears will be confirmed.
A common way of dealing with fear is denial. Denial can have a protective effect for the patient. Denial is undesirable if the patient does not search for medical care for an existing health problem, or if he does not follow certain recommendations that are important for his recovery. A second coping style is to block unpleasant thoughts and ideas. The patient tries not to think about it. For example, patients who are afraid of symptoms no longer register the degree to which they suffer from those symptoms. A third way of coping that can be used when dealing with fear is for the patient to retreat emotionally or physically. For example, the patient may refuse to learn how to deal with his stoma. A fourth coping mechanism is excessive emotional behavior, such as getting extremely angry or dependent. The patient may also blame himself or others to deal with his fear. In addition, the rationalization of anxiety, such as coming up with reasons for socially accepted behavior, or hiding the actual thoughts and feelings and behaving in the opposite way is yet another coping style a patient can use to handle fear.
Nursing professionals often respond to a patient’s fear by giving information and explanations, instantly reassuring the patient or denying the patient’s anxiety. Probably, nursing professionals often use reassurance too quickly, because they think they know what the patient is worried about, or they think that providing information is the best way to reassure someone. If you ignore the patient’s fear by interrupting with a question, or by continuing with your assessment or questionnaire to downplay the fear, the patient is no less afraid. The patient gives greater expression to his anxiety. The nursing professional should explore the patient’s anxiety, not proceed directly to reassurance, but pay attention to the specific needs of the patient and provide information if this is what the patient says he needs. It often turns out that patients talk openly about their concerns, when invited. For example, talking about the fear of more pain by starting to do exercises if the patient has osteoarthritis, or the fear of dependency on medication for sleep disorders or psychiatric health problems.
If the patient has received a very negative message, he will not take any more education. Therefore, it is wise to use the first session to convey this message to the patient, allow the patient to react to this and briefly to state what the treatment options are. In a second interview, you can come back to the negative message. You then ask how the patient he has been coping with the problem, you explore his fears and needs, your offer the patient the opportunity to ask questions and connect with relevant information (causes, prognosis, treatment). In a third interview, the patient can indicate his choice of treatment and a start may be made with self-management. With less-threatening messages in the first conversation, you can focus on the provision of information (the patient knows what is going to happen in the investigation, treatment or care). The starting point is the education needs of the patient. Of course, you begin with how the patient is and also asking whether he is aware of the investigations and, for example, anesthesia that may be implemented. In other words: you prepare the patient to give permission. In a second interview, the focus is on whether the patient gives consent. You ask the patient if he has understood, invite him to tell this to your “back,” and you look what questions the patient has. In this second interview, you discuss things such as results of investigations, examining whether the patient is in agreement, for example, with the form of anesthesia and with treatment. You give information about discomfort, pain, etc. The third conversation focuses on the experiences of the patient after he has undergone surgery and the attention is focused on self-management. You invite the patient to think about how to change his self-management behavior or how to deal with the health problem.
Self-regulation 5. The attitude of the patient with chronic health problems facing the prescribed treatment is intertwined with his attitude to the health problem and with the attitude of the nursing professional. If the patient experiences too little evidence for his health problem or for the effectiveness of his medication, this encourages him to be noncompliant (Marks et al. 2005).
Self-management interventions focused on patients with COPD were found to have improved their knowledge about the health problem, and these patients experienced an increase in their quality of life and the number of hospital (re) records had decreased (Coster and Norman 2009).
Self-management interventions aimed at children with eczema and their parents showed a (weak) effect on reducing the severity of the eczema, but it improved the quality of life experienced by the parents of the children (Coster and Norman 2009).
5.11 Effects of Promoting Self-Management: Patients’ Well-Being
Effects of promoting self-management – optimization of health and patients’ well-being:
Patient has more control over the conversation.
Positive view of the patient’s problems.
Successful self-management of the patient improves both the health of the patient and his well-being (Ryan 2009). It has a positive effect on the patient’s health, if the patient has more and the nursing professional has less control over the conversation. If the nursing professional is shown to be involved affectively, this has a beneficial effect on the health of the patient. If the nursing professional provides more information when the patient shows (nonverbal) information searching behavior, this also has a positive effect. Promoting confidence, motivation, and a positive view of patients’ (health) problems, all have a positive effect on the patient’s health status and level of well-being.
Patients with mental health problems who have received little information, experience more symptoms than patients who say they are sufficiently informed. For example, less knowledgeable patients with depressive symptoms experienced more restrictions.
Health professionals tend to feel more sympathy for healthier patients. This means that nursing professionals communicate differently with less healthy patients. Also, healthier patients are more satisfied with the care and treatment. The discontent with less healthy patients is probably caused by the communicative behavior of the nursing professional. Another factor to consider is the fact that if someone is feeling ill, he feels rather irritated or behaves differently compared with healthy people.
Has noncompliance to do with fear? From the point of view of the nursing professional, noncompliance may be seen as a stubborn process, but from the patient it may be experienced as a way of dealing with fear. In one study, it was found that in patients with arthritis, half the medical instructions were not followed. Patients with arthritis were found to experiment with dosage and timing, because they were afraid: afraid of side effects; afraid of dependence on drugs; afraid that the functioning of the medicines would decrease or that the use did not fit with their individual lifestyle; afraid that the use by others around them was seen as weakness; and afraid that the medicines did not fit with their own health views.
General overuse and general harm? Patients tend to see a series of dangers in and are afraid of using drugs. A distinction may be made between general overuse and general harm. General overuse is the use of medication in general and parallels patients’ idea that medications are prescribed too often by doctors. General harm is about harming medication and is patients’ idea that medicines in general are a malicious poison. These factors are strongly linked to each other and have a great influence on how the patient handles his medication use (Marks et al. 2005).
5.12 Effects of Promoting Self-Management: Patient Participation
Effects of promoting self-management – patient participation:
Promote self-management by increasing the patient’s participation and increase (over time) the patients’ responsibility for his lifestyle and (health) behavior.
Patient empowerment, motivating the patient to take an active role and participate in self-management.
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