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Introduction: There is an increasing awareness in the field of cardiology regarding the need for improved delivery of palliative care in patients with heart failure (HF). Professional guidelines have drawn attention to the importance of discussing the heart failure trajectory with patients and their families. These discussions can include, for example, talking about the prognosis, expectations for the future, and care at the end-of-life. It seems difficult for health care professionals to choose the right time for initiating these discussions. They often avoid these conversations because they are afraid of taking away hope and make the patients and their families anxious. Aim: The overall aim of this thesis was to improve communication about the heart failure trajectory in patients, their families, and health care professionals. Design and methods: This thesis includes five studies using different designs and data collection methods. Study I has a cross-sectional design using a questionnaire to collect data to describe heart failure nurses’ perceptions of and practice in discussing prognosis and end-of-life care with heart failure patients. Study II has a descriptive and comparative design, where a survey was performed to describe Swedish and Dutch heart failure nurses’ reasons for discussing or not discussing prognosis and end-of-life care with patients. Study III has an inductive and exploratory design, where HF patients participated in focus groups or individual interviews. Data was collected based on their perceptions of communication about the heart failure prognosis. Study IV was a small-scale ethnographic study describing and evaluating the delivery of a simulation when teaching third-year nursing students about end-of-life care at a Swedish university. Study V used co-design in which patients with HF from primary care, their family members and health care professionals (physicians and nurses) from palliative and HF care were invited to be constructive participants in the design process of a communication intervention. Health care professionals participated in a first feasibility testing of the intervention. Results: Most Swedish HF nurses had discussed prognosis (96%) and end-of-life care (84%) with a HF patient at some point in clinical practice. The nurses often reported that a physician was to have the main responsibility for such discussions (69%), but that the nurse was also believed to have a role to play (I). Prognosis and end-of-life care were, together with sexual activity, () the three least frequently discussed topics in HF clinics in both Sweden and the Netherlands (II). In conversations with 1,809 Swedish and Dutch HF patients, prognosis was discussed with 38% of the patients and end-of-life care was discussed with 10%. In study III, patients expressed different experiences of and preferences for communication about their HF prognosis. Many patients described that the health care professionals had not provided them with any prognosis information at all. The patients had different understandings of HF as a chronic illness, which had an impact on their preferences for communication about their prognosis (III). The simulation training described in the ethnographic study (IV) was part of an end-of-life care simulation during the last term of the 3- year bachelor degree level nursing education program, where students learn and practice basic palliative care. The students felt that the simulation training was a good opportunity to practice handling end-of- life situations as it gave them a chance to experience this situation and their own feelings and thoughts on death and dying. In study V, an intervention to improve communication about prognosis and end-of-life care in HF care was developed and some areas were feasibility tested. Heart failure patients, their families and health care professionals working in HF care or palliative care participated in the development process. Health care professionals (nurses and physicians) participated in the following feasibility testing of the intervention. Conclusions: This thesis shows that prognosis and end-of-life care are seldom discussed with HF patients in Swedish and Dutch heart failure care. and that many heart failure nurses have ambiguous attitudes towards discussing these topics with patients and their families (I+II). The patients described that they receive different messages concerning their heart failure, and that they also have different preferences for discussing the heart failure trajectory with health care professionals. The professionals need to understand the impact of heart failure on each patient and adapt the communication to each individual (III). End-of-life care simulation with skilled supervisors shows great promise for health care professionals to learn good communication skills in end-of-life care conversations (IV). A Question Prompt List and a communication course might be useful for improving communication about the heart failure trajectory in patients, their families, and health care professionals
In the narrative of every human life and family, illness is a prominent character. Even if we have avoided serious illness ourselves, we cannot escape its reach into our circle of family and friends. Illness brings us closer to one another through caregiving and separates us through disability and death, yet little attention has been paid to personal and family illness in psychotherapy. Rather, therapists tend to focus on the psychosocial realm, leaving the biological realm to other physicians and nurses. Susan H. McDaniel, Jeri Hepworth, and William J. Doherty invited therapists who work with individuals and families experiencing chronic illness and disability to describe clinical cases that illustrate their approach to medical family therapy. Contributors then were asked to share a personal story about their experiences with illness, and to explain how those experiences affect the way they work with their clients. Vivid case studies dealing with a range of illnesses, including cancer infertility, schizophrenia, AIDS, heart disease, diabetes, asthma, and multiple sclerosis, show how the therapists' own experiences of illness are relevant to their care of others-and how these experiences can be used to form a healing bond in therapy. Poignant, honest, and illuminating, The Shared Experience of Illness allows us to understand more fully the relationship between the personal and the professional.
First published in 1988, Living with Chronic Illness presents a vivid account of the reality of life with chronic illness – from the perspective of patients and their families. The authors look at the expectations, priorities, and problems of those most affected by chronic illness, and examine the strategies they have developed to cope with their considerable disadvantages. The experience of carers, the ways in which their problems change over time, are also major themes in the book. The book looks at the everyday life of people with the following conditions: stroke, renal failure, multiple sclerosis, Parkinson’s disease, arthritis, heart attack, epilepsy, rectal cancer, psoriasis, and diabetes. In each case, an overview of the consequences of a particular illness is presented, before discussion of specific problems in daily life – maintaining family relationships, managing treatment regimes, coping with work and home commitments, and living with bodily change and social stigma. This volume will be of importance to all those concerned with providing support and planning care for the chronically ill – in the health and social services and in voluntary organizations. Students of medical sociology, policy makers and planners will also find the insights and research presented here valuable in the understanding of the daily life of people with chronic illness. It will also be of use for those in professional training, in nursing, social work, general practice and related areas.
"Not only can you survive with heart disease, you can actually thrive with it for many, many years. If you cope well and follow the advice I give you in this book, you can live as long as you would if you didn't have the illness." -- from Chapter One, "Begin the Journey" In this landmark volume, Wayne M. Sotile, Ph.D., breaks the story that every heart patient needs to know: In many cases, it's how you deal with the illness and not the condition of your heart that will determine how completely you recover, or if you recover at all. If you're one of the 61 million Americans diagnosed with heart illness -- whether you've had a heart attack, high blood pressure, angina, or surgery -- the program in this book can extend your life and might even save it. Many books have dealt with the physical aspects of cardiovascular illness, but Thriving with Heart Disease is the first to offer patients and their loved ones a program for coping with the emotional and psychological side effects that can ravage relationships and throw families into disarray. Dr. Sotile's extraordinary success with cardiac patients attests to his belief that living with heart disease is not a temporary adjustment but a journey you take one moment at a time toward the healthy life you were meant to live, surrounded by the people you love. Based on the experiences of thousands of patients at Wake Forest University's Cardiac Rehabilitation Program -- the nation's first mind-body center for living well with heart illness -- Dr. Sotile's program provides step-by-step instructions on how to establish a robust, new normal life for you and the people you care about, whether you're a parent with young children, a mature adult with grandchildren, or a single man or woman whose family is a devoted network of friends. Written with warmth and humor and filled with news of the latest research into the links between heart and brain, body and soul, Thriving with Heart Disease is the book that every heart patient needs to read. It's not a diet book, an exercise book, or a cookbook. It is the first self-help manual to guide heart patients and their loved ones through the psychological side effects they're likely to experience and onto the path to vibrant, new normal lives.
This open access textbook represents a vital contribution to global health education, offering insights into health promotion as part of patient care for bachelor’s and master’s students in health care (nurses, occupational therapists, physiotherapists, radiotherapists, social care workers etc.) as well as health care professionals, and providing an overview of the field of health science and health promotion for PhD students and researchers. Written by leading experts from seven countries in Europe, America, Africa and Asia, it first discusses the theory of health promotion and vital concepts. It then presents updated evidence-based health promotion approaches in different populations (people with chronic diseases, cancer, heart failure, dementia, mental disorders, long-term ICU patients, elderly individuals, families with newborn babies, palliative care patients) and examines different health promotion approaches integrated into primary care services. This edited scientific anthology provides much-needed knowledge, translating research into guidelines for practice. Today’s medical approaches are highly developed; however, patients are human beings with a wholeness of body-mind-spirit. As such, providing high-quality and effective health care requires a holistic physical-psychological-social-spiritual model of health care is required. A great number of patients, both in hospitals and in primary health care, suffer from the lack of a holistic oriented health approach: Their condition is treated, but they feel scared, helpless and lonely. Health promotion focuses on improving people’s health in spite of illnesses. Accordingly, health care that supports/promotes patients’ health by identifying their health resources will result in better patient outcomes: shorter hospital stays, less re-hospitalization, being better able to cope at home and improved well-being, which in turn lead to lower health-care costs. This scientific anthology is the first of its kind, in that it connects health promotion with the salutogenic theory of health throughout the chapters. the authors here expand the understanding of health promotion beyond health protection and disease prevention. The book focuses on describing and explaining salutogenesis as an umbrella concept, not only as the key concept of sense of coherence.
For many years, there has been a great deal of work done on chronic congestive heart failure while acute heart failure has been considered a difficult to handle and hopeless syndrome. However, in recent years acute heart failure has become a growing area of study and this is the first book to cover extensively the diagnosis and management of this complex condition. The book reflects the considerable amounts of new data reported and many new concepts which have been proposed in the last 3-4 years looking at the epidemiology, diagnostic and treatment of acute heart failure.
Coronary heart disease kills more people in the United States than any other heart disorder, and it is the leading cause of death among American women. Jerome E. Granato, a distinguished cardiologist with more than twenty-five years of experience, has created an authoritative and accessible guide to this common condition, providing patients and their families with insight and advice. Dr. Granato begins by describing the basic science of the disease, known also as atherosclerosis, in which arteries become clogged and damaged. He then explains who is at risk and how the disease is detected and diagnosed. He covers all the treatment options, from medications to surgery, and answers such questions as: • How do I know if I have coronary heart disease? • What is a heart attack? • Does my condition need to be treated with surgery? • What are the benefits and risks of balloon angioplasty? • What are stents and how do they work? • How can I manage my condition for the future? He addresses the needs of specific populations, and concludes by discussing how a healthy diet and regular exercise can influence health before and after treatment and how it can help prevent disease. Even after coronary heart disease is diagnosed, its course can be modified. This valuable resource will help patients and their families make some of the most important health care decisions they will ever face.
Heart failure is the only cardiovascular disease that is increasing. The impact on the critical care environment and the health care system, as a whole, is significant from both a cost and burden to the system perspective. There are 6.5 million hospital days a year and nearly $40 billion dollars in yearly health care costs attributed to heart failure in the United States. There are more Medicare monies spent for diagnosing and treating heart failure than any other Diagnosis Related Group. There is a 24% hospital re-admission rate for this diagnosis which leads to financial implications for health care systems. The human cost is also significant. Less than half of Americans diagnosed with heart failure survive greater than 5 years. The ongoing health care needs and cost of this chronic disease takes a significant toll on patients’ finances, time and quality of life. Over $2.9 billion dollars is spent annually on the pharmaceutical management of heart failure in the United States. This diagnosis is the leading cause of hospitalization for patients who are 65 years of age and older. Few health care providers in the critical care environment are not affected by heart failure on a routine basis. Caring for these patients and their families is both a challenging and yet a rewarding experience. This edition will provide critical care nurses with a comprehensive heart failure review which is essential in caring for this challenging population given the dynamic health and critical care environments.
Introduction: There is an increasing awareness in the field of cardiology regarding the need for improved delivery of palliative care in patients with heart failure (HF). Professional guidelines have drawn attention to the importance of discussing the heart failure trajectory with patients and their families. These discussions can include, for example, talking about the prognosis, expectations for the future, and care at the end-of-life. It seems difficult for health care professionals to choose the right time for initiating these discussions. They often avoid these conversations because they are afraid of taking away hope and make the patients and their families anxious. Aim: The overall aim of this thesis was to improve communication about the heart failure trajectory in patients, their families, and health care professionals. Design and methods: This thesis includes five studies using different designs and data collection methods. Study I has a cross-sectional design using a questionnaire to collect data to describe heart failure nurses’ perceptions of and practice in discussing prognosis and end-of-life care with heart failure patients. Study II has a descriptive and comparative design, where a survey was performed to describe Swedish and Dutch heart failure nurses’ reasons for discussing or not discussing prognosis and end-of-life care with patients. Study III has an inductive and exploratory design, where HF patients participated in focus groups or individual interviews. Data was collected based on their perceptions of communication about the heart failure prognosis. Study IV was a small-scale ethnographic study describing and evaluating the delivery of a simulation when teaching third-year nursing students about end-of-life care at a Swedish university. Study V used co-design in which patients with HF from primary care, their family members and health care professionals (physicians and nurses) from palliative and HF care were invited to be constructive participants in the design process of a communication intervention. Health care professionals participated in a first feasibility testing of the intervention. Results: Most Swedish HF nurses had discussed prognosis (96%) and end-of-life care (84%) with a HF patient at some point in clinical practice. The nurses often reported that a physician was to have the main responsibility for such discussions (69%), but that the nurse was also believed to have a role to play (I). Prognosis and end-of-life care were, together with sexual activity, () the three least frequently discussed topics in HF clinics in both Sweden and the Netherlands (II). In conversations with 1,809 Swedish and Dutch HF patients, prognosis was discussed with 38% of the patients and end-of-life care was discussed with 10%. In study III, patients expressed different experiences of and preferences for communication about their HF prognosis. Many patients described that the health care professionals had not provided them with any prognosis information at all. The patients had different understandings of HF as a chronic illness, which had an impact on their preferences for communication about their prognosis (III). The simulation training described in the ethnographic study (IV) was part of an end-of-life care simulation during the last term of the 3- year bachelor degree level nursing education program, where students learn and practice basic palliative care. The students felt that the simulation training was a good opportunity to practice handling end-of- life situations as it gave them a chance to experience this situation and their own feelings and thoughts on death and dying. In study V, an intervention to improve communication about prognosis and end-of-life care in HF care was developed and some areas were feasibility tested. Heart failure patients, their families and health care professionals working in HF care or palliative care participated in the development process. Health care professionals (nurses and physicians) participated in the following feasibility testing of the intervention. Conclusions: This thesis shows that prognosis and end-of-life care are seldom discussed with HF patients in Swedish and Dutch heart failure care. and that many heart failure nurses have ambiguous attitudes towards discussing these topics with patients and their families (I+II). The patients described that they receive different messages concerning their heart failure, and that they also have different preferences for discussing the heart failure trajectory with health care professionals. The professionals need to understand the impact of heart failure on each patient and adapt the communication to each individual (III). End-of-life care simulation with skilled supervisors shows great promise for health care professionals to learn good communication skills in end-of-life care conversations (IV). A Question Prompt List and a communication course might be useful for improving communication about the heart failure trajectory in patients, their families, and health care professionals.