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Despite continuing scientific and technological developments in the field of healthcare, heart failure has increasing prevalence and incidence throughout the world and remains one of the most important causes of morbidity and mortality. According to the 2015 data of the American Heart Association, there were approximately 6.2 million heart failure patients aged >20 years in the USA, and when 870,00 new diagnoses per year are added, it is estimated that the rate of diagnosed cases will increase by 46% by the year 2030. As heart failure is a chronic and progressive disease, it requires many years of follow-up, treatment, and care. The primary aims of heart failure treatment are to reduce mortality and hospital admissions, increase functional capacity, correct symptoms and findings, and improve quality of life. In addition to the medical treatment of patients with heart failure, to provide compliance with the recommendations related to the management of signs and symptoms which cause mild-severe impairments in daily life because of fatigue, shortness of breath, and other cardiac findings, it is necessary to record and strengthen self-care practices. Self-care is essential for patients with heart failure [HF], and improving self-care is a major focus of multidisciplinary HF management programmes worldwide. This chapter will consider self-care in four phases, determining the self-care evaluation, self-care maintenance, self-care monitoring, and self-care management.
Maltepe University School of Nursing, Istanbul, Türkiye
*Address all correspondence to: fusunafsar@maltepe.edut.r
1. Introduction
Throughout the world, non-infectious diseases are the cause of most deaths and disability, diminish quality of life, and create high healthcare costs. According to 2022 data of the World Health Organisation [WHO], cardiovascular diseases are the leading cause of death [17.9 million deaths] among non-infectious diseases. Heart failure is a syndrome that is dealt within the scope of cardiovascular diseases with a high comorbidity profile, which affects 26 million people worldwide.
Despite continuously developing science and technology in the healthcare sector, heart failure has a high prevalence in older adults and has a negative effect on survival [1]. According to the 2015 data of the American Heart Association, there were approximately 6.2 million patients aged over 20 years with heart failure disease; 870,000 new diagnoses were added every year, and it was predicted that the rate of diagnosis would increase by 46% by 2030 [2]. The prevalence of heart failure in developed countries has been reported to be approximately 1–2% of the adult population and ≥ 10% in those aged >70 years.
The 5- and 10-year survival rates of heart failure patients are 44.5 and 24.5%, respectively. These patients also have frequent hospital admissions. It has been reported that the re-admission rate within 30 days of hospital discharge is 20–30%, and the rehospitalisation rates within the first 6 and 12 months are 28 and 31%, respectively [3]. Heart failure survival has improved over time, but the absolute 5-year mortality rate for heart rate from the time of diagnosis remains at 50%. It has been stated that the financial burden of the care of heart failure patients exceeds 30 million USD per year [4]. The estimation of the prevalence of advanced stage heart failure continues to be an epidemiological difficulty as a result of the relatively low incidence of this condition and the dependence of detection on a developing range of treatments [5].
2.1 The identification and classification of advanced stage heart failure
Advanced stage heart disease is a process that significantly reduces quality of life and survival, in which more serious signs and heart failure symptoms continue during mild effort and/or at rest despite optimal evidence-based medical treatment, device treatment, or surgical intervention and which requires several important decisions to be taken in management of the disease such as frequent re-admission to hospital, the need for inotropic treatment, and the placement of mechanical support devices or heart transplantation [6].
Since heart failure is a progressive syndrome, the necessity of evaluating the functional capacity and symptoms of the patients is also at the forefront. When the classification systems used to define the severity of HF are examined, it is seen that the American College of Cardiology [ACC] also includes the risk factors in the classification, and the New York Heart Association [NYHA] is a classification system based on functional status [7].
In various studies, advanced stage heart disease has been identified most often with the two measurements of left ventricle ejection fraction [generally <35%] and low functional capacity [NYHA III-IV]. Currently, the most appropriate classification system to answer the question of “at what stage of advanced heart failure does the patient require a mechanical support device or heart transplantation treatment?” is the INTERMACS classification (Figure 1) [8].
Figure 1.
Advanced stage heart disease classification [7].
2.2 Advanced heart failure symptoms
Advanced stage heart failure has been defined as a syndrome requiring the presence of at least a few of the cardinal symptoms such as shortness of breath, fluid retention/oedema, fatigue, activity intolerance, and exercise limitations [9]. The aetiology of symptoms in heart failure is complex and difficult to understand. These symptoms are partly due to an increase in left ventricle filling pressure, partly due to a decrease in cardiac flow rate, and partly due to widespread myopathy (Table 1) [8].
Symptoms of heart failure
Typical
Breathlessness
Orthopnoea
Paroxysmal nocturnal dyspnoea
Reduced exercise tolerance
Ankle swelling
Inability to exercise
Swelling of parts of the body other than ankles
Bendopnoea
Less typical
Nocturnal cough
Wheezing
Bloated feeling
Postprandial satiety
Loss of appetite
Decline in cognitive function, confusion [especially in the elderly]
Depression
Dizziness. Syncope
Table 1.
Advanced stage heart failure symptoms.
Shortness of breath seen associated with pulmonary congestion that develops due to heart failure is the most common symptom of heart failure. Exercise dyspnoea, orthopnoea, and paroxysmal nocturnal dyspnoea are among the symptoms seen in advanced heart failure in particular, and these affect physiological processes in all tissues [10]. Therefore, the grading of dyspnoea and evaluation of accompanying symptoms are important in symptom management. In addition to medical treatment in dyspnoea management, respiratory exercises are used in mild- and moderate-level dyspnoea, and positive pressure support devices are used in the management of advanced grade dyspnoea [11].
Increased activation of inflammatory cytokines creates a catabolic condition resulting in insulin resistance, anorexia, and weight loss. By causing atrophy and weakness in both skeletal and respiratory muscles, this condition further increases physical limitation. In addition, fatigue is one of the frequently seen symptoms in advanced heart failure for reasons such as electrolyte imbalance, overuse of diuretics, thyroid dysfunction, anaemia, and impairment in peripheral oxygenation as a result of a decrease in cardiac circulation and an increase in peripheral vascular resistance. The determination of effort and functional capacity and the monitoring of heart rate and heart rhythm are important in advanced stage heart failure patients [12]. Peripheral oedema seen as systemic venous congestion, abdominal ascites, and fullness in the jugular veins is among the cardinal symptoms in advanced stage heart disease patients. Follow-up of patient weight and the grading of oedema are important in respect of arranging treatment. It is recommended in the ESC 2016 guidelines that patients inform the healthcare team of an unexpected weight increase of more than 2 kg in 3 days [13].
Symptoms such as shortness of breath, lethargy, and fatigue experienced by patients with heart failure because of the nature of the disease itself, and sleep problems and a decrease in sleep quality, which is a basic component of daily living activities, occur because of the drugs used in treatment and limited functional capacity. Sleep disorders such as difficulty in falling asleep and maintaining sleep, insomnia, sleep apnoea syndrome, and excessive daytime sleepiness are frequently seen in individuals with heart failure [14]. Sleep apnoea is the most common cause of sleep disorders seen in heart failure patients. Two types of sleep apnoea are seen: obstructive, as a result of upper respiratory tract collapse, and central, as a decrease in central respiratory stimulus [15].
Comorbid problems and symptoms, especially in elderly patients with advanced heart failure, have a negative effect on the quality of life of patients and lead to frequent hospital admissions. The problems experienced cause depression, anxiety, and feelings of hopelessness in both the patient and their primary caregiver. In the management of psychological symptoms, it is recommended in the ESC 2016 guidelines that the management of self-care is included in the self-care practices of the patient and carers, and when necessary, referral to specialists should be made for mental health support.
Heart failure patients tend to have impaired cognitive functions, and this reduces their capacity to perceive when the disease is worsening and makes compliance with complex heart failure treatments more difficult.
2.3 Advanced stage heart failure treatment
Heart failure treatments include following a healthy lifestyle, drug treatments, operations, and medical support devices.
In the guidelines created by heart failure specialists, pharmacological treatments include diuretics, ACE [angiotensin-converting enzyme inhibitors]/ARB[angiotensin receptor blockers]/ARNI[angiotensin receptor-neprilysin inhibitor], Betablockers, Mineralocorticoid Receptor Antagonists [MRAs], Sodium-Glucose Co-transporter-2 inhibitors, Hydralazine and isosorbide dinitrate, and Digoxin. Regular follow-up of multiple drug use is required for the adjustment of drug doses according to present and developing symptoms [13].
In patients with advanced heart failure, compliance with the drug regimen and the development of lifestyle behaviours such as a low-sodium diet, regular exercise, and monitoring of weight together with the follow-up of drug-related symptoms that could develop are a part of the treatment [16].
When these methods are not sufficient in the treatment of advanced stage heart failure, the patients are evaluated for cardiac support devices [ventricle assistive devices] and heart transplantation.
Based on the European Cardiology Association guidelines for the diagnosis and treatment of acute and chronic heart failure, a commitment to self-care is an important component in improving patient results.
“Self-care” is defined by the World Health Organisation [WHO] as the ability of individuals, their families, and society to develop health, prevent disease, protect health, and be able to cope with disease and disability with or without the support of healthcare services [17].
The concept of self-care includes the promotion and development of health, prevention and control of disease, self-treatment with drugs, and the provision of care by those on whom the patient is dependent and the participation of healthcare professionals when necessary.
The most important step in the development of self-care is the assessment of the patient. A holistic assessment of the self-care status of a patient and determination of priority areas for behavioural change can provide encouragement and useful basic data for personal change.
Self-care allows individuals to deal with their requirements holistically.
3.1 World Health Organisation self-care behaviours
The World Health Organisation [WHO] has defined self-care behaviours for the maintenance and development of health (Figure 2) [17].
Figure 2.
Health-promotion tips for self-care practices.
3.2 Maintaining self-care
This has been defined as the process of practices promoting the maintenance of the physical and psychological balance and protecting health through disease management. The requirements of self-care can be listed as health literacy, self-awareness, a moderate level of physical activity, a healthy diet, avoiding or minimising risk, disease knowledge, drug compliance, and rational use of devices related to the treatment.
3.3 Monitoring self-care
Self-care is performed by making judgments from the recording of systematic observations of the individuals, their daily behaviours, their surroundings, and their personal relationships and then comparing their own behaviours with those of others or ideal behaviours.
3.4 Management of self-care
Following the observations and judgement, individuals can identify their own behavioural or environmental problems, and then, by changing behaviours, adjusting the environment, and increasing self-reactions, an appropriate reaction can be given to reach personal targets. Self-care management includes all the activities made by patients to identify and interpret their own symptoms and to manage their own health.
Heart failure self-care is defined as the process of health care and disease management, which maintains stability in decisions and behaviours, defined by changes in the patient status and provided by correct applications.
To be able to maintain healthy self-care in patients with advanced stage heart failure, it is necessary to first know the barriers to self-care. These barriers can be examined under 3 headings as personal factors, disease burden, and an unproductive support system [18].
4.1 Factors affecting self-Care in Heart Failure
4.1.1 Personal factors
4.1.1.1 Lack of self-care information
The first step in preventing barriers to poor health outcomes that can be experienced by heart failure patients is for patients and carers to have knowledge at a level that will enable them to adopt and maintain a complex series of behavioural changes.
The reasons for a lack of knowledge of advanced stage heart failure patients and their carers include low education levels, limited health literacy, and education programmes that are presented by healthcare institutions but that do not establish behavioural changes. It has been reported to be important that sources of information are accessible and are prepared taking into consideration the age, sight and hearing impairments, forgetfulness, and low health literacy levels of patients with heart failure, and that regular medical visits are made by healthcare professionals [19].
4.1.1.2 Negative emotions related to heart failure
In addition to sustaining optimistic feelings by hoping that life will be prolonged with evidence-based drug treatments, devices, or surgical options, the culture and beliefs of patients, complex treatments, the presence of symptoms, disability, and negative developments in the disease process can cause negative feelings such as a sense of uncertainty, anxiety, and fear in many patients with advanced heart failure. Emotions such as hopelessness, depression, and anger experienced by heart failure patients can constitute a significant barrier to the self-care process by creating feelings of a lack of interest in life and preferring death to life [18].
4.1.1.3 Difficulties in changing habits
With the determination of personal behaviours that create an increase in disease risk, lifestyle behaviours have entered the agenda of many international institutions such as the European Cardiology Association, the American Diabetes Association, and the WHO. In 2019, the WHO published a self-care behaviours guide for health and well-being. Improvements in self-care have been brought about together with a change in habits.
A diagnosis of heart failure brings lifestyle changes such as disease-specific diet, perception and management of symptoms, drugs, regular medical check-ups, and exercise. Studies of patients with heart failure have reported that patients maintain self-care activities when symptoms become more severe or when they are hospitalised, but then return to previous habits when symptoms are alleviated or after discharge from hospital [20].
4.1.2 Disease burden
The life of a patient with advanced stage heart failure in particular is affected physically, psychologically, economically, socially, and financially, and all these reasons constitute a great burden for patients and carers. The factors affecting the disease burden can be examined in 3 subcategories of physical decline, comorbidities, and financial pressure [2].
4.1.2.1 Progressive physical decline
The symptoms of advanced stage heart failure generally include shortness of breath during exercise or at rest, orthopnoea, lack of energy, fatigue, anorexia, weight loss, depression, sleep disorders, pain, and cognitive disorders [8]. Decreasing physical ability causes difficulties in daily living activities, or lethargy, fatigue and shortness of breath during activities, thereby affecting patients psychologically.
4.1.2.2 Comorbidities
Comorbidities such as hypertension, diabetes mellitus, respiratory problems, osteoarthritis, and gastrointestinal disorders affect the self-care process. As the management of advanced heart failure and comorbidities requires the referral of patients to more than one different medical branch, different laboratory tests, and many drugs to be taken, it is a difficult and tiring process. As each disease has its own dynamics, this makes it difficult for patients to manage the symptoms and comply with treatment [19].
4.1.2.3 Financial pressure
The process of managing advanced heart failure, especially when there are additional comorbidities, creates a financial burden for patients and their primary carers. In addition to the costs of accessing healthcare services, periodic doctor visits, laboratory tests, drugs, specific diets, and frequent hospitalisations, there may also be loss of employment. The fall in income and increased outgoings during the course of the disease can limit the capabilities of patients for self-care [3].
4.1.3 Inadequate support systems
The third main category of barriers to self-care of patients with advanced heart failure is inadequate support systems. There are three subcategories of insufficient social support, lack of attention to self-care by healthcare providers, and limited access to healthcare providers.
4.1.3.1 Insufficient social support
Both the presence of symptoms and the treatment of advanced stage heart failure require a long and tiring process. There is a need in this process for family, state, healthcare, and social support in physical, psychosocial, and financial aspects [3].
4.1.3.2 Lack of attention to self-care by healthcare providers
The starting point of self-care is healthcare centres and healthcare professionals in the centre. For the patient to be able to perform effective self-care, healthcare professionals should enable the patient to systematically apply awareness and knowledge. Specialisation in the field of advanced stage heart failure is an important criterion for healthcare professionals undertaking the provision of effective self-care [21].
The main reasons for the lack of attention to self-care by healthcare professionals in the hospital environment are a heavy workload, limited professional autonomy, a medical treatment-focused approach, a limited time for patient education, and a lack of comprehensive hospital discharge programmes. The responsibilities of healthcare professionals discharging patients are limited. That there is no separate unit for home healthcare service for the follow-up of patients with advanced heart failure is one of the conditions weakening the self-care process.
4.1.3.3 Limited access to healthcare services
In addition to the diagnosis of advanced heart failure, elderly patients who live alone or far from the hospital and have financial problems experience difficulties in accessing healthcare services.
4.2 Self-care evaluation
Heart failure self-care is defined as the process of healthcare and disease management in which the stability of decisions and behaviours is maintained, defined by changes in the patient’s condition and for which correct applications are provided. Studies in the field of heart failure have shown the need for healthy lifestyle behaviours, the follow-up and management of symptoms, and determination of the level at which the patient can take responsibility, in addition to treatment compliance. The international scales used for heart failure patients include the Self-Care of Heart Failure Index, the European Heart Failure Self-Care Behaviour Scale, and the Minnesota Living with Heart Failure Questionnaire [MLWHFQ].
The Self-Care of Heart Failure Index [SCHFI], which is the most comprehensive evaluation scale, has been translated into 22 languages and has been modified several times over the years in accordance with evidence-based practices. The SCHFI version 7.2 consists of four sections of self-care [10 items], symptom perception [11 items], self-care management [8 items], and self-belief [10 items] [22].
The European Heart Failure Self-Care Behaviour Scale is a short self-reported scale of 9 items. The questionnaire includes items related to self-care behaviours of heart failure, consisting of questions directly measuring behaviours associated with fluid and weight management [23].
The Minnesota Living with Heart Failure Questionnaire [MLWHFQ] is a quality of life questionnaire comprising two dimensions [physical and emotional subdimensions] and 21 patient-specific questions. It was designed to measure the effect on the quality of life of heart failure and the treatment received. To date, the questionnaire has been translated into 33 languages, and validity and reliability studies have been conducted [24].
4.3 Self-care behaviours of patients with heart failure
4.3.1 Physical activity
The reduced exercise capacity of patients with advanced stage heart failure is associated with impairments in cardiac and pulmonary reserves, and reduced peripheral and respiratory skeletal muscle perfusion and/or function. Shortness of breath and/or fatigue symptoms in particular cause a decrease in physical activity capacity [25]. In patients with advanced stage heart failure, correct evaluation of the patient’s exercise intolerance is an important subject both in the gaining of self-care behaviours and in the determination of medical and device treatment.
Exercise intolerance in advanced stage heart failure is evaluated subjectively in the New York Heart Association [NYHA] functional classification and with health-related quality of life questionnaires. Exercise capacity can be evaluated with objective quantitative methods using the 6-minute walk test [6MWT] and with the cardiopulmonary exercise test [CPX] and graded exercise test with electrocardiography [ECG].
From the subjective methods, the Barthel daily living activities test is a test that can be applied and easily understood by both patients and carers.
Healthcare personnel usually use the 6MWT to evaluate the daily living activity of patients with advanced stage heart failure. The 6MWT is a simple test in which the patient walks at a self-selected speed for 6 minutes along a 30-metre corridor, and the distance covered is measured. The distance walked is useful in providing information about the grade of disease severity and the efficacy of treatment, and in predicting hospitalisations and mortality in heart failure [26, 27].
The CPX is a strong prognostic marker, especially in advanced stage heart failure, and is used to clinically evaluate the risk of unwanted events and candidacy for transplantation. The CPX variables respond positively to pharmacological, lifestyle, and surgical interventions, thereby making serial CPX necessary for the evaluation of therapeutic efficacy [28, 29].
Exercise-based cardiac rehabilitation is a first-class recommendation in the American Heart Association. Medicare and Medicaid Services Centres and most insurance companies in the USA allow for at least 6 weeks [generally 36 sessions] of exercise-based cardiac rehabilitation service for patients with stable chronic heart failure of LVEF <35% and those who despite this have NYHA functional class II and IV symptoms [30].
4.3.2 Pain control
In patients with advanced stage heart failure, monitoring of fluctuations in body weight is a very important self-care behaviour as it can be a sign of an increase in retention of body fluids.
4.3.3 Diet
Cachexia in patients with advanced stage heart failure is associated with a poor prognosis, as it is related to obstruction, inflammation, malabsorption, anorexia, and neurohormonal over-activation. Approximately 5–15% of patients with heart failure experience unwanted weight loss due to reduced skeletal muscle mass, with or without fat tissue depletion [13]. The occurrence of unintended weight loss without oedema of up to >5% within 5–7 months or > 6.12%, or BMI <20 kg/m2, is defined as cachexia. Therefore, dietary and nutritional evaluation of patients with advanced stage heart failure is important.
In the evaluation of the nutritional status of patients with advanced stage heart failure by healthcare professionals, structured nutritional evaluation tests such as the Subjective Global Assessment [SGA], the Nutritional Risk Screening [NRS] 2002, or the Mini-Nutritional Evaluation are used in addition to analytical and anthropometric parameters. In recent years, the frequently used NRS has been used as a malnutrition-screening tool based on the self-report of the patient and includes items to evaluate the current nutritional status and disease severity [31].
In advanced heart failure, the body passes from an anabolic to a catabolic status with an increase in the levels and activity of catabolic mediators such as pro-inflammatory cytokines and glucocorticoids, and a decrease in the levels and activity of anabolic mediators such as insulin and growth hormone. The increase in protein destruction causes muscle loss [32]. Therefore, the daily calorie and protein intake of patients should be regulated.
4.3.4 Oedema follow-up
Increased activation of the renin-angiotensin-aldosterone system [RAAS] together with increased vasopressin causes a worsening of sodium and fluid retention in patients with advanced heart failure. Pleural effusion and anasarca oedema associated with a volume increase can be seen in patients with advanced heart failure [11].
Oedema becomes evident with an increase of at least 3–5 kg. It is generally bilateral, progresses upwards from the feet as it is mainly determined by gravity, and may form in the trunk, face, and arms. This status can be accompanied by ascites, and pleural and pericardial effusion [33]. Although there is no objective measurement in the classification of oedema, a visual analogue scale and pictures showing the localisation of oedema are generally used in the self-care of patients [34].
Healthcare professionals grade oedema from 1+ to 4+. A grade of 1+ indicates mild oedema in both feet and ankles; 2+ indicates oedema in both feet, legs, and the hands or forearms; 3+ indicates oedema in both lower and upper extremities and in an area of the face region, and 4+ indicates anasarca oedema.
4.3.5 Alcohol consumption and smoking
Excessive alcohol consumption is one of the most important causes of dilated cardiomyopathy [defined as alcoholic cardiomyopathy-ACM], and it is estimated that 40% of dilated cardiomyopathy can be associated with excessive alcohol consumption. This supports that there should be lower alcohol consumption limits than are recommended in many guidelines and that patients with cardiac myopathy should stop drinking to prevent cardiac failure [35].
Nicotine and carbon monoxide in cigarettes are the primary harmful substances in respect of the heart and vascular system. Nicotine increases the pulse rate and the oxygen requirement of the heart, temporarily increases blood pressure, increases blood clotting, and causes atherosclerosis by damaging the endothelial layer. By combining with haemoglobin, carbon monoxide converts to carboxyhaemoglobin, thereby reducing the oxygen transport capacity of the blood and the amount of oxygen going to the tissues.
4.3.6 Sleep
Patients with advanced stage heart failure often experience insufficient and poor-quality sleep because of periods of pulmonary fluid overloading, resulting in orthopnoea, paroxysmal nocturnal dyspnoea, and nocturia [36].
Respiratory disorders during sleep affect >50% of patients with low ejection fraction. When heart failure becomes more severe, there is an evident increase in the prevalence of Cheyne-Stokes respiration with central sleep apnoea [characterised by a ventilation pattern expressed with hypocapnia associated with hyperventilation]. Another main type of sleep disorder often seen in heart failure patients is obstructive sleep apnoea [OSA]. OSA is especially common if the patient is overweight, has diabetes, and has a large neck circumference, or if there is retro or prognathism. In addition, OSA is accepted as one of the comorbidities contributing to low ejection fraction.
The determination and recording of factors affecting sleep, such as changes in sleep and activity, diet, and drugs used, is important for the provision of sleep hygiene.
4.3.7 Compliance with drugs and treatment
According to the recommendations of the ESC/HFA guidelines related to heart failure, regular follow-up and monitoring of biomedical parameters is useful in providing safety and the optimal dose of drugs and the determination of the development of complications or disease progression [37].
Pharmacological treatment of heart failure consists of several different drugs that have different dose strategies, especially in heart failure patients with reduced ejection fraction [HFrEF]. When the drugs for frequently seen comorbidities such as atrial fibrillation, hypertension, and diabetes are taken into consideration, the result is a labyrinthine, continuously changing drug regimen that requires time, presence of mind, and dedication for successful compliance [38].
4.3.8 Symptom perception
Symptom perception is related to signs observed and listening to the body to determine physical sensations allowing the patient to identify, interpret, and label symptoms. Symptom awareness, with measurement and taking rapid action through evaluation, is defined as one of the basic elements in the self-care process of patients with advanced heart failure [39].
Symptom evaluation by the patient is assessed under the headings of frequency, intensity [e.g., on a scale of 1–10], rate [how many times in a time interval], duration, model [mornings, after activity, etc.], symptom specificity [in the whole body, in the arms, etc.], and pain [20]. In addition to clinical evaluation, symptoms can be evaluated using the Numerical Grading Scale, the Edmonton Symptom Assessment Scale [ESAS], the ESAS-HF, or the Integrated Palliative Care Outcome Scale.
4.3.9 Cognitive status
Heart failure causes neurohormonal, inflammatory, and hemodynamic abnormalities, which are thought to contribute to all cognitive disorders. There is at least a mild-level cognitive disorder in approximately 70% of patients with heart failure, and this has been shown to be associated with poor self-care.
4.4 The monitoring of self-care in patients with advanced heart failure
The monitoring of self-care behaviours is a data collection tool. The European Cardiology Association guidelines recommend regular follow-up of heart failure patients by healthcare providers. Symptom monitoring can be supported by distant follow-up or the personal monitoring by family members, unofficial carers, and healthcare specialists. The importance of vital findings and symptoms in patients with advanced heart failure has been stated in all the guidelines. The methods that can be useful in the monitoring of symptoms by the patients themselves and by healthcare professionals can be grouped as mHealth Tools and paper-based tools to determine the signs of heart failure, and medical devices and tools consulted by healthcare specialists to determine the signs of heart failure [40].
4.4.1 mHealth tools to determine the signs of advanced heart failure
4.4.1.1 Smartphone applications
Smartphone applications can be used to measure blood sugar levels and blood pressure, heart rate, and even blood oxygen fullness, and to monitor sleep, stress levels, and the activities of patients with advanced heart failure. In the light of the patient information evaluated, smartphone applications can be used as a retrospective record store with the related records of the patient status [41]. In addition, it can function as a reminder of drugs taken at previously defined times and as a list of symptoms, signs and drugs when the status of the patient worsened.
4.4.2 Paper-based tools to determine the signs of advanced heart failure
Daily: the daily use of these to support self-care, especially at home, is a daily record of weight, vital signs, nutrition, water and salt consumption, drugs used, symptoms seen, and fear and concerns of the patient and can be a very important data source for healthcare professionals, providing information independently of the self-care of the patient.
Brochure with Schematic Warning Signs: these are used by patients marking on brochures showing the form of symptoms of heart failure.
4.4.3 Medical devices determining the signs of advanced heart failure
To monitor the bodily fluid retention of patients, scales and the Vest to Measure Pulmonary Fluid can be used.
4.4.4 Tools consulted by healthcare professionals to determine the signs of advanced heart failure
Visual video consultations can provide savings in time, energy, and hospital resources. A telephone number on which healthcare professionals can be directly contacted is important for early intervention to symptoms of patients with advanced heart failure [42].
4.5 The management of self-care behaviours of patients with advanced heart failure
The management of self-care is the process of decision-making and appropriate response for the patient to appropriately manage functions related to him/herself. Self-care management of patients with advanced heart failure is defined as taking responsibility for the management of disease-related symptoms, treatment, and maintaining healthy lifestyle behaviours. Self-care management is provided by the patient, the primary carer, and healthcare professionals.
The self-care management of patients with advanced stage heart failure is formed of the stages of knowledge, awareness, determination, decision-making, and application.
4.5.1 Evaluation of self-care management
Following the definition of the concept of the self-care management process [SCMP] by Jones and Preuett, the SCMP was developed with testing [43], and the characteristics of the concept were protected with explanations and additions [44].
4.5.2 Management of physical activity
Lifestyle exercises [walking, using stairs when possible, parking at a distance from shops, light gardening, and dancing] and structured activities and exercise can be useful as a priority for patients with heart failure. However, especially in patients with advanced heart failure, supervised exercise is recommended to increase exercise tolerance and improve quality of life [30]. One of the aims of self-care behaviours is for patients with advanced stage heart failure to come to a condition in which gradual mobilisation or stretching/relaxing movements of small muscle groups can be made and daily living activities can be performed.
4.5.3 Drug management
Different pharmacological combinations are used in the treatment of advanced heart failure. The aim in self-care management is to provide drug compliance of the patient. Within drug compliance, the patient is expected to adhere to the principles of rational drug use. These principles are that drugs are taken at the prescribed time and dose, that the patient has information about the drugs, and that vital signs and drug-related symptoms are recorded and healthcare professionals are informed. In recent years, many interventions have been developed to increase the drug compliance of cardiovascular disease patients, including technical interventions such as drug reminder applications, educational interventions, and interventions to increase motivation.
4.5.4 Oedema control, water and salt restrictions
The control of fluid intake is the primary nutritional recommendation. Daily fluid intake should be at the level of 1500–2000 ml, and daily weight follow-up should be made in respect of rapid weight increases. Salt restriction is a lifestyle change that should not be neglected in heart failure patients. In the American Heart Society guidelines, salt consumption of <3gr/day is recommended for symptomatic grade C and D patients [43]. The education of patients and their carers in respect of water and sodium restrictions and their follow-up are extremely important. Sodium-restricted diets can reduce total calorie and/or macro- and micronutrient intake and can therefore worsen the nutritional status [44].
4.5.5 Diet
Daily energy intake should be 25–30 Kcal/kg/day, and the amount of protein intake should be 1.5–2 gr/kg/day. Cholesterol in the diet should be restricted to be <200 mg per day; more foods containing unsaturated fat should be given, and fatty dairy products and foods high in saturated fats should be avoided [43].
The frequent use of diuretics leads to a decrease in potassium, sodium, and magnesium levels, and an increase in uric acid, blood glucose, and lipids. Those taking diuretics that lose potassium can be recommended to consume more foods with a high potassium content such as prunes, bananas, apricots, soya, oranges, broccoli, melon, tomatoes, spinach, and potatoes. Recommended herbal products include daily 1–2 cloves of garlic, 200–300 mg hawthorn extract, 1500 mg calcium, and 500 mg magnesium supplements. Thiamin, selenium, magnesium, zinc, calcium, and vitamin D deficiencies are frequently seen in patients with heart failure. It has been shown that with the addition of micronutrients such as iron, copper, selenium, riboflavin, folate, and vitamins A, B1, B6, B12, C, D, and E to the treatment of these patients, exercise tolerance has increased and symptoms have decreased [42]. When oral nutrition remains insufficient, enteral nutrition can be applied with foods high in protein concentration. This can be changed to parenteral feeding when the gastrointestinal system is significantly affected [45].
4.5.6 Sleep management
In cases with heart failure and obstructive sleep apnoea [OSA], positive pressure mask treatment [CPAP] can be considered. There is some evidence that OSA symptoms, cardiac function, biomarkers of cardiovascular disease, and quality of life can improve with CPAP treatment in patients with heart failure, but there is little evidence of an improvement in mortality [36].
As there can be a higher mortality rate in patients with predominantly central sleep apnoea and low ejection fraction, they should be applied with adaptive servo-ventilation.
4.5.7 Symptom management
It is important to convert to behaviour the teaching given by healthcare professionals of advanced heart failure symptoms and observe progression, symptom identification, support for listening to the body, and/or interpretation of heart failure symptoms. Follow-up of patient behaviours must be performed by healthcare professionals. Follow-up should be made with a symptom diary kept by the patient, heart failure decompensation, and criteria for hospitalisation and mortality [39].
4.5.8 Breathing exercises
Advanced stage heart failure causes a decrease in cardiac flow and in the blood flow of peripheral and respiratory muscles. These changes can cause muscle dysfunction leading to fibre atrophy [basically type I] and weakness in peripheral and respiratory muscles. Therefore, muscle weakness related to frequent shortness of breath can cause fatigue, reduced functional capacity, and increased exercise intolerance in these patients. In this context, inspiratory muscle training [IMT] can be used as an assistive intervention to develop cardiopulmonary capacity in these individuals. Strengthening of the respiratory muscles provides more efficient airway clearance, inspiratory pressure, and maximal expiration, and prevents fatigue of the respiratory muscles [46].
Breathing exercises regulate cardiac parameters such as respiration, ejection fraction, aortic pressure, pulmonary artery pressure, and tissue oxygenation [47]. Slow breathing exercises are defined according to a controlled respiratory rate to reduce respiratory rate and increase respiratory breadth [tidal volume].
Deep breathing exercises are a form of exercise that focus on deep and slow respiration at targeted breaths per minute using the diaphragm.
4.5.9 Preventing falls
In parallel with existing symptoms and the age of patients with advanced heart failure, evaluations of the risk of falling, drug-related risks, exercise capacity, and walking and balance are included in the clinical practice guidelines of risk management [48].
4.5.10 Psychosocial support
There has been increasing interest in the use of stress management interventions, including mindfulness-based interventions [MBIs], for the alleviation of psychological problems and the improvement of physical health outcomes [49].
4.5.11 Protection against infection
Vaccination against influenza and pneumococcal infections is recommended by the European Society of Cardiology. Unless there are contraindications, it is recommended that heart failure patients are vaccinated against influenza every year and against pneumococcal infections once every 5 years.
Self-care in heart failure patients is very important for the improvement of patient outcomes, including quality of life, and lower hospitalisation and mortality rates. In this chapter, the information has been reviewed related to the factors affecting the self-care of patients with advanced stage heart failure, the behaviours necessary for self-care [how diet can be adhered to, which symptoms are to be monitored], and how self-care can be managed and monitored. Symptom management and treatment compliance behaviours in patients with advanced heart failure are the most important self-care behaviours that affect the patient’s quality of life and survival, and it is not possible for these behaviours to be managed only by the patient and their relatives. The biggest risk for patients and their relatives is that they may not even be aware of the incomplete/incorrect information or practices in the self-care behaviours they learn and apply. Collaboration of multidisciplinary health professionals such as physicians, nurses, psychologists, and dietitians who are autonomous in the field of heart failure is the golden criterion in the management of the advanced stage heart failure self-care process. Autonomous healthcare professionals in the field of heart failure know what needs to happen before taking action on issues related to their patient; notice what is not; perceive, interpret, and associate new situations; and ensure that the process progresses positively by directing and monitoring the patient to the right team member in a timely manner.
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Written By
Füsun Afşar
Reviewed: 25 September 2023Published: 17 October 2023
Open access peer-reviewed chapter
