Vid utmattningens gräns: Utmattningssyndrom som existentiellt tillstånd : Vårdtagares och vårdgivares erfarenheter av utmattningssyndrom och rehabilitering med en existentiell ansats i svensk vårdkontext

Sammanfattning: Background and objectives: Stress-related illness is a growing public health problem in Sweden and it is the most common reason for sick leave today. Stress-related illness causes suffering on a number of levels and affects the patient’s health and life in the long term. The stress-related ill health also leads to consequences for society, causing high costs for sick leave and health care as well as lost workforce since people partially or entirely lose their capacity to work. Research on stress-related ill health and rehabilitation often underline work-related conditions as crucial in dealing with the problem. There is also research that points out psychosocial factors in understanding stress-related ill health. What we know little about is the existential perspective of clinical burn-out. Therefore, it is of importance to investigate people’s existential experiences of clinical burn-out and the significance of an existential perspective in rehabilitation.Aim: The overall aim of this thesis is to gain insight into the existential experience of clinical burn-out as well as to highlight the significance of an existential perspective in rehabilitation. In addition, the thesis aims to reach a deeper understanding of clinical burn-out from an existential point of view and contribute to the field with knowledge of the existential dimension of health.Methods: The study, conducted in 2011, is based on qualitative interviews made with an inductive hermeneutic approach. Five patients and seven care givers were interviewed, focusing their existential experiences of clinical burn-out as well as their experiences of rehabilitation with an existential approach. A strategic selection was made of informants in the context of a rehabilitation program with an existential approach for people diagnosed with clinical burn-out. The data was analysed in two steps. In the first step the data was interpreted with an inductive hermeneutic approach. In step two of the analysis, the data was interpreted with a deductive hermeneutic approach, using Karl Jasper’s concept of limit situation as a way of interpreting the existential experience. Aaron Antonovsky’s concept sense of coherence was used as a tool for understanding components that can contribute to restoring health.Results: In this study, the patients describe clinical burn-out as a comprehensive existential experience that can be perceived as being in between life and death, in a shadow world, trapped in a dead end. It’s a situation characterized by being powerless. It creates a need to comprehend one’s situation in order to be able to regain control and manage it. It’s a struggle to make sense of the life situation. When not being met with understanding, the patients lose hope. Existential issues in terms of meaning, existence and life choices become urgent. Working with the existential perspective requires trust, openness from both caregiver and patient, distinctness, a way to communicate it and courage to take on the challenge of dealing with existential issues. The perspective also requires that the existential suffering can be contained. Dealing with existential questions leads to self-knowledge and insights that enables a possibility to make different choices and leave negative behavioural patterns. Also, it can lead to a discovery of spirituality and religion as a resource in life. Besides their personal struggle for meaning, the patients see an existential void in society, leaving people without tools to handle existential needs. This is understood as something that affects people’s ability to handle stressful times in life.The care providers understand burn-out as a manifestation of a way of living that is not sustainable. It is an existential experience embodied in body and mind that can be experienced as being drained of life. It’s an existential challenge, causing grief when realizing one’s limitations as a human being. Also, loss of meaning and sense of existential vulnerability due to an experience of being annihilated is crucial for understanding the deep existential crisis that clinical burn-out can induce. This situation makes the patient ask existential questions about identity, meaning, values and direction. In the burnout-process the patients have distanced themselves from their own self and therefore need to reconnect with themselves. This makes the existential questions central in the rehabilitation as a way to reconnect to inner strength and resources, which are prerequisites for starting a health promoting, sustainable process which is empowering, making it possible to see oneself as a human being who experience meaning, not only as a patient with a diagnosis. Instead of finding meaning in the diagnosis, the patient’s existential questions and the existential experience is a key to moving forward, out of the situation. Meaning-making is therefore important in the rehabilitation.A holistic-existential approach and view of man makes it possible to work with the complexity of the situation. The holistic-existential approach creates synergies and offers an extra tool both for the caregiver and the patient. Focusing on the patient’s resources and competence makes it possible to see the crisis as a way to learn from it.The existential perspective in health care and rehabilitation is enabled by competence, openness, reliance, empathy and respect when meeting the patient. It also requires courage to take on the challenge of dealing with existential issues. It can be hard for both the patient and the care giver to confront existential suffering. It is the responsibility of the care giver to enable the existential perspective by acknowledging and making the existential perspective possible to communicate and work it through.The care providers understands values in modern society as contributing to people’s experience of feeling alone with existential needs, which intensifies their existential aloneness.The care providers’ experience is that the biomedical paradigm aggravates an existential perspective. The perspective is not associated with the care situation. There is a lack of knowledge about and understanding of the value of the existential perspective, all the way from the decision-making level to the clinical meeting with the patient. In addition, the paradigm affects how the patients express their illness. Also, the perspective requires time. Existential perspectives, therefore, tend to be concealed in the health care context.Applying Karl Jasper’s concept of limit situation, clinical burn-out can be interpreted as a defining existential experience. It can be understood as a limit situation when humans realize their limitations and at the same time get insights that are crucial for their lives. It’s an experience they wish they had not gone through, but on the other hand, it has led to insights they do not want to be without. The meaning-making process is health promoting by recreating meaning, the fundamental part of sense of coherence, which is crucial for a salutogenic direction.Conclusion: The existential state that the clinical burnout patients go through can, using Karl Jasper’s concept, be understood as a limit situation. According to Jasper’s reasoning, the limit situation can be perceived as facing an abyss, making it clear one has limitations as a human being. At the same time, the experience can be perceived as reaching a limit where humans can get insights about human life that can enhance life. Clinical burn-out, using Aaron Antonovsky’s concept, can be understood as a loss of the components that create sense of coherence. Loss of meaning is particularly central for understanding burn-out.Consequently, it is crucial to acknowledge the existential challenge that the patient is facing, as well as the importance of the meaning-making process for facilitating a movement in a health promoting manner. It gives a deeper understanding of the challenges and needs of patients suffering from clinical burn-out.The existential dimension of health has been highlighted in health promotion, but gets little attention in practice. This is especially significant in the health care context. This points out the need for a discussion about how the existential health dimension can be used as a resource in health care and rehabilitation and how this resource for health can be applied in a better way in health promotion and public health.