Burnout as an existential deficiency – lived experiences of burnout sufferers

Scand J Caring Sci; 2011; 25; 294–302
Burnout as an existential deficiency – lived experiences of burnout sufferers Aiming at a deeper and existential understanding of burnout, by looking especially at the patterns of health, suffering and expressions of understanding of life in a longitudinal perspective, qualitative data from 18 Swedish women and men were analysed. Burnout as an illness has been subject to constant questioning during its incidence in western societies. Yet it is generally agreed that people afflicted by burnout experience huge problems and suffering. Data from interviews face to face, telephone follow‐up interviewing during 1 year and e‐mail interview dialogues were collected. With a nursing science perspective in which health and suffering are basic concepts, an interpretive analysis revealed signs of existential deficiencies in the lived experience of the people afflicted. The images of the patterns of lived experience elucidated reveal a discord between the people and their work, a blindness towards their own actions, bodily illness as signs of burnout, experiencing a collapse as a ‘crossroad’, secondary suffering related to the social system and a struggle towards a way out. Our interpretation reveals assumptions concerning three levels of life: actions, values and universal existence, which is somewhat different from previous studies. Unless a person is in contact with these three dimensions, he/she seems to find it difficult to maintain health in his/her encounters with life. Implications for health care are existential interest on the part of caregivers and understanding of life as signs of universal values. Patients’‘shut off’ and restrained longings understood as signs of ‘darkness’ in their understanding of life may induce caring acts on the part of caregivers that offer patients an opening and a glimpse of what it might be like to find health in the midst of their suffering. The caregivers’ own natural light of understanding of life can then work as a caring component.     

Waiting for surgery; living a life on hold--a continuous struggle against a faceless system

This interpretive-phenomenological study examined the lived experience of being on the waiting list for arthroplastic surgery of the knee or hip. Interviews reveal that respondents experience suffering in different ways: illness-, caring- and life-suffering. Suffering leads to a struggle in order to have their caring needs met and the struggle is often fruitless-against a faceless enemy-"the system". No one is there to answer their plea or the frustration they experience. This in combination with their present life situation may lead to a disrupted self-image. Finding or creating meaning in suffering appears to be a crucial issue in the struggling process. Respondents who are able to preserve or create meaning in life are able to reformulate their life-world and live a full life, in spite of severe pain and disability.     

The immediate lived experience of the 2004 tsunami disaster by Swedish tourists

Title. The immediate lived experience of the 2004 tsunami disaster by Swedish tourists. Aim. This paper is a report of a study of the immediate lived experiences of victims and relatives of the 2004 tsunami disaster. Background. Disasters serve to remind us of our frailty and vulnerability and raise existential questions. From the perspective of caring sciences, suffering is regarded as a natural source for change in patients’ understanding of the world and the meaningfulness of their lives. Method. A phenomenological hermeneutic study was conducted, using in‐depth interviews with a convenience sample of 19 informants in 2006–2007. Ricoeur’s theory of interpretation served as a guiding principle for interpreting the interview texts. Findings. The immediate lived experiences of the tsunami survivors and their relatives revealed a comprehensive picture, described as different acts of the drama. These acts were: ‘experiencing the very core of existence’, ‘a changed understanding of life’ and ‘the power of communion’. Confronting our frailty and vulnerability makes us more authentic to ourselves, to our relatives and to life itself. The first step towards progression involves an act where the suffering is seen and validated by another person. Reshaping the suffering together with the family adds a valuable dimension to life. Availability and presence by the family opened up for communion. Conclusion. The immediate lived experiences of the tsunami disaster from an existential and ontological perspective constitute an important aspect of understanding the whole phenomenon. Concepts such as communion, understanding life and progression of suffering can help us construct an image of this previously unresearched dimension.     

Being in the world of the suffering patient: a challenge to nursing ethics

Ethics in caring is what we actually make explicit through our approach and how we invite the suffering patient into a caring relationship. This phenomenological study investigates suffering and health and how this presupposes a deeper reflection on ethics in caring. The aim was to try to discover, describe and understand how patients experience their life situation three years after undergoing surgery. The theoretical approach is based on central aspects of Eriksson's caritative theory (i.e. the view of the person as body, soul and spirit). The informants were four women and four men aged between 55 and 77 years. The empirical material revealed suffering that was connected with both illness and life. Suffering involves experiences of grief, loneliness and struggling. Health implies a yearning for something beyond the current life situation, a yearning to experience some meaning in life. This leads to an awareness of unplumbed possibilities. Understanding the experiences of individual patients demands of us, as both researchers and nurses, to act, seeking after the scientific truth (i.e. a deeper reflection of the ontological, epistemological and methodological questions). The idea of responsibility helps us to interpret and meet the innermost desires of suffering patients in their true presence. Caritative caring ethics means 'being there', confirming patients' absolute dignity; it is a manifestation of the love that 'just exists'. Compassion requires an inner disposition to go with others to the places where they are weak, vulnerable, lonely and broken. An ontology of caring provides both a starting point and a context for reflection about ethics and the ethical life.     

The patient's perceived caring needs as a message of suffering

The patient's perceived caring needs as a message of suffering ¶The aim of the study was to arrive at a deeper understanding of the patient's experience of caring needs, that is, of problems, needs and desires, by investigating and explaining how these will be expressed and shaped in the caring relation and to illuminate its implications for caring. The target population consisted of 38 patients in a medical ward and 37 patients in a surgical ward in a central hospital in Western Finland. The patients were interviewed in the wards and asked about perceived caring needs. By means of a hermeneutical process of interpretation a pattern emerged which was interpreted as pictures of themselves and of the nurses. These types of patients fell into three groups: the satisfied, the complaining and satisfied, and the complaining and dissatisfied patients. The types of nurses were divided into the competent and friendly, the competent and contact-creating and the competent and courageous. The patients' caring needs can be interpreted and understood from the standpoint of their experience of suffering, but also in relation to their experience of pleasure and comfort. The most conspicuous caring needs were experiencing confidence in the competence of the nurses, comfort, guidance, dialogue and closeness, which the patients expressed as problems, needs and desires. The patients' caring needs can contain new possibilities of growth and development. The nurse can relieve patients' suffering by promoting their experience of comfort. If the nurses' view of the limits of reality are extended to comprise the existential/spiritual dimension of human beings as well, new possibilities will emerge of interpreting and understanding patients' caring needs as a message of suffering.     

Existential aspects of living with addiction - part II: caring needs. A hermeneutic expansion of qualitative findings

Aim. This paper aims to describe caring needs associated with existential aspects of living with addiction. Background. Spirituality is considered a driving force within and the concept relates to self, others and God and the relationships between them. The spiritual dimension is of great importance in both the addiction itself as well as in recovery and addressing caring needs relating to spirituality is important in nursing. Design. Hermeneutic inquiry was used to explore caring needs related to peoples experiences of living with addiction. Method. This paper is a hermeneutic expansion of findings presented in Part I. Existential themes in the form of spiritual challenges and caring needs are reflected upon as a process between figure and background. Results. The themes presented are: meaning – meaninglessness, connectedness – loneliness, life – death, freedom – adjustment, responsibility – guilt, control – chaos. Caring needs associated with them are identified as; the need to create a new frame of reference for interpreting of life, the need to experience coherence in life, a restored dignity as well as the need for a sense of community and attachment, confirmation and acceptance. The caring need for forgiveness and reconciliation is also identified as well as the need for continuity, comprehensibility and manageability. Conclusions. When caring for patients suffering from addiction nurses should address patients’ spirituality. The caring communion is vital, as it is the foundation for meeting the patients’ needs. Intervention by nurses should focus on aspects that will help patients feel alive and in communion with others. Relevance to clinical practice. Understanding and being able to identify patients’ caring needs associated with existential aspects of living with addiction will enable nurses to provide professional care and promote patient’s recovery.     

Caring touch – patients' experiences in an anthroposophic clinical context

This study describes the phenomenon of caring touch from the patients' perspective in an anthroposophic clinical context where caring touch is often used to promote health and alleviate suffering. The aim of the study was to explore and phenomenologically describe the phenomenon of caring touch from the patients' perspectives. The study has been carried out with a Reflective Lifeworld Research approach in order to understand and describe human existential phenomena. Ten female patients were interviewed in an anthroposophic clinic in Sweden. The findings show how caring touch has multifaceted meanings and makes the patients' feel present and anchored in a meaningful context. The patients' feel that they are seen, accepted and confirmed. Furthermore, touch creates a caring space where the patients become receptive for care and has the power to alleviate the patients' suffering, as well as to frighten and cause or worsen the suffering. In order to take advantage of the caring potential, the patient needs to be invited to a respectful and sensitive form of touch. An interpersonal flexible space is necessary where the touch can be effective, and where a dynamic interplay can develop. In conclusion, caring touch is an opportunity for carers to support well‐being and health. The carers need to approach their patients in both a sensitive and reflective way. A caring science perspective can serve as a help to further understand touch as a unique caring act.     

Meanings of giving touch in the care of older patients: becoming a valuable person and professional

Touch is central to nursing and health care workers frequently touch their patients, consciously or unconsciously in their interactions with them. Most literature has studied touch from a patient perspective, thus inquiry about professionals' experiences are rare. The aim of this study was to illuminate meanings of giving touch in nursing care of older patients. To understand the meaning of lived experiences of giving touch in care of older patients, interviews with 12 health care professionals in northern Sweden were analysed using a phenomenological-hermeneutic approach influenced by the philosophy of Ricoeur. The findings show that giving touch in the care of older patients is a transforming experience, where one suddenly perceives oneself as both a valuable person and professional who no longer powerlessly confronts patients' haunted and disrupted bodies, but who, by means of touch, has gained power to ease this suffering. The experience also transforms the way one regards older patients. Instead of seeing a severely demanding patient suffering from dementia and/or pain, one is able to see the person behind the disease as a human being, like oneself. A relationship described as calm, friendly and humane is created between caregiver and patient when giving touch, a relationship that transcends the moment of touch and influences one's way of caring. This understanding is presented using the theoretical framework of the philosophy of Marcel. Giving touch has the power to shed new light on health care professionals' experiences of caring for older patients suffering from dementia and/or pain, giving them the power to be a valuable person and professional.     

Existential caring in the family health experience: a proposed conceptualization

Empirical realities and technological advances in the clinical practice context continuously call for ethical dialogue among healthcare providers. The nurse's voice of advocacy for humane caring grounded in an existential understanding of the complexities of the health experience remains a salient responsibility of moral agency. If nurses are to care for families, as society requires, then nurse caring, a phenomenon currently defined and understood primarily at the individual patient-nurse level, must be diligently and broadly explored in terms of its worth to guide nursing service with families. The purpose of this theoretical paper is to explore a conceptualization of care with families in the health experience that emanates from the philosophical tenets of existentialism and underpinnings of symbolic interactionism and is interpreted into action by the ethics of care. Current and classic literature, inclusive of philosophical and empirical works, provide the background for analysis of the following elements: existential caring orientation, family perspective, family-nurse interaction, construction of meaning, family meaning construction, nurse meaning construction, family-nurse co-construction of meaning and existential advocacy. Existential philosophy is understood as the basic underlying lens guiding the nurse in taking an existential caring orientation as depicted in the resultant conceptualization. Caring in the family health experience is best facilitated by a relational stance where the nurse acknowledges the family's unique perspective. Through the family-nurse interaction the nurse gains understanding of the family's perspective being constructed. Nursing practice with families confronting the empirical realities and technological advances of the new millennium will be enriched when moral agency includes ethical dialogue among healthcare providers and families. Existential advocacy with and for families grounded in the nurse's understanding of the family perspective enhances the context for moral agency.     

Iranian nurses’ preparation for loss: finding a balance in end‐of‐life care

Aim. To explore the nurse–patient interaction in terminally ill situations in acute care, focusing on the nurses’ preparation for loss. Background. Caring for dying patients can be a distressing and sometimes even threatening experience for nurses. Despite the vast body of literature on nurse/patient interaction and the quality of end‐of‐life care, few studies focus specifically on nurses’ experience. Design. A grounded theory approach was used to explore nurses’ interaction with dying patients and their families and examine how nurses deal with situations in which the patient’s death is inevitable. Method. Eighteen nurses were interviewed up to three times each at three teaching hospitals in Isfahan, Iran, during autumn 2006. A shortlist of possible participants was obtained by means of theoretical sampling and those who had experienced the death of patients and were able to express their feelings verbally were selected. Results. The results clarified a core consideration: striking a balance between restorative and palliative care, information and hope, expectations and abilities and intimacy and distance. Conclusion. Attaining a balance in caring for dying patients is a major challenge to nurses: it concerns not only their interactions with patients and their families, but also their perceptions of themselves and their actions in end‐of‐life care. Relevance to clinical practice. In end‐of‐life care, it is important for nurses to be able to change the focus of their care when the patient’s condition is diagnosed as irreversible. They also need to be well equipped to maintain a balance, thereby preparing themselves for the patient’s forthcoming death.     

Primacy of existential pain and suffering in residents in chronic pain in nursing homes: a phenomenological study

The study's rationale:  Chronic pain is a major health problem among the elderly, both in the community and within nursing homes.
Aims and objectives:  The purpose of the study was to examine the essentials of the experience of residents in chronic pain in nursing homes.
Methodological design and methods:  The research approach was interpretive phenomenology. Data were collected in 23 dialogues with 12 residents, ages 74–97. Mean age was 86 years.
Results:  The main finding is the primacy of existential pain and suffering in residents in chronic pain in nursing homes. Indeed they recounted a culmination of existential pain and suffering, e.g. loss of loved ones, loss of former home, health and independence, as well as loss of connectedness. Many seemed to be in some kind of grief and their work towards reconciliation to their life and circumstances seemed an ongoing process with successful results while others seemed more haltering or even stuck. Living with chronic pain in a nursing home is indeed a challenge and many blocks to successful pain management were identified. The main sources of strength were loved ones who were seen as lifelines . Nurses seemed distant in their narratives of pain management.
Study limitations:  Frailty of residents is a limitation as a few were starting to forget from one interview to the other and some were actually in pain at the time of our dialogue.
Conclusions:  It is important to support a healthy process of grieving and reconciliation in elderly people who live with chronic pain in nursing homes. Those who suffer in silence with their pain and discomforts and do not seek help should be identified and cared for. The residents' own sources of strength should be identified and supported. Multi-professional collaboration with educational thrust is needed towards quality pain management of elderly people in nursing homes where existential pain and suffering is not excluded.     

Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study

Title. Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study Aim. This paper is a report of a study to describe the essential structure of the lived experience of living with severe chronic obstructive pulmonary disease (COPD) during the palliative phase of the disease. Background. Chronic obstructive pulmonary disease is one of the most common diseases throughout the world. Shortness of breath, fatigue and cough are the most troublesome symptoms, and living with COPD often imposes limitations on daily living. The disease has a great impact on quality of life and affects the extent to which people can be active in daily life. Methods. We conducted qualitative interviews of eight people with COPD and collected data over a 2‐month period in 2003. Our patients were recruited from two pulmonary disease clinics in West Sweden. We used a phenomenological methodology to analyse the interviews. Findings. Daily life for people with COPD is affected in several different ways. The patients described how their physical limitations forced them to refrain from meaningful activities in everyday life and led to social isolation. Everyday emotions vacillated between viewing life as meaningful and meaningless. A sense of involvement and the belief that life was meaningful gave the individual the energy and the desire to continue living and to envision a future. Conclusion. Nursing care should include support and facilitation, so that patients can live rather than exist to the end of their lives. It is important to learn from patients and tailor activities to their social, existential and physical priorities, where appropriate family‐centred support may be most effective.     

Being family: the family experience when an adult member is hospitalized with a critical illness

Aims and objectives. The purpose of this qualitative study was to understand and interpret the ‘family experience’ with an adult member hospitalized with a critical illness. Background. Nursing practice in critical care settings has traditionally focused on individual patient needs with only tangential recognition of family needs. Investigation to describe the family experience to illuminate family nursing practice has been lacking. The majority of studies thus far related to critical illness and family are quantitative and reveal constraints to family care and problematic nurse–family interactions. The logical next step is a new kind of family research to enhance nursing of the family as a whole. Design. Family systems theory and existential phenomenology provided the frameworks guiding the study. Methods. Semi‐structured ‘family as a group’ interviews were performed with 11 families. Data were analysed using Van Manen's hermeneutic method. Rigor was addressed with trustworthiness criteria. Results. The family experience was analysed within Van Manen's framework of lived space, lived relation, lived body and lived time. A constitutive pattern of being family was revealed. Conclusions. Being family bonds families and makes them exceedingly strong during the critical illness experience. Being a family unit is what gives most families the ability to endure the emotional upheaval and suffering that come with the critical illness experience. Relevance to clinical practice. Nurses have profound power to help families bear this experience. Family caring is enhanced with the presence of nurses who recognize the importance of ‘Being Family’ for the family, acknowledge the significance of the nurse–family relationship and act on a commitment to be with and for the family.     

What does it mean to live with a congenital heart disease? A qualitative study on the lived experiences of adult patients.

BACKGROUND: Adults with congenital heart disease constitute a relatively new and continuously growing patient population. In addition to medical problems, patients perceive specific psychosocial concerns that influence their lived experiences and quality of life. AIM: This study aimed to explore the lived experiences of adult congenital heart disease patients. METHODS: Unstructured, in-depth interviews were performed with 12 patients, aged between 25 and 40 years and suffering from moderate or severe heart defect (tetralogy of Fallot, transposition of the great arteries). Interviews were tape recorded and transcribed verbatim. Data were analyzed using Grounded Theory procedures. RESULTS: Feeling different was the central theme of the patients' lived experience, as they are faced with physical limitations and visible signs due to the heart defect. The experienced discordance between their world and healthy individuals' world implies that patients struggle constantly with themselves and with their environment to be accepted as normal. The feeling of being different was influenced by attitudes of the environment, health care, and patient's personality. Moreover, it determined the perceived impact of the disease on the patient's daily life. CONCLUSION: This study shows that normalisation is the most important process when dealing with patients suffering from a congenital heart disease.     

Integration of End‐of‐Life Education into a Community Health Nursing Course

Student nurses and novice nurses report that they received little in their nursing education to adequately prepare them for the death of a patient. The American Association of Colleges of Nursing's (AACN) competencies for end‐of‐life care assert the need for competent nursing care at the time of death. To prepare students to care for dying patients and their families, a hospice clinical experience in a community health nursing course was designed to facilitate the development of competence in caring for adults and children at the end of life. At the end of the semester, the students were able to demonstrate principles of pain and symptom management and to communicate the goals and philosophy of hospice care to dying patients and their families. The students also demonstrated the ability to advocate for individuals at the end of life through the provision of information about hospice care, especially the benefits for timely referral to hospice and palliative care. The incorporation of a clinical experience into a community health nursing course that focuses on end‐of‐life care is an effective approach to teaching both community health concepts and care of dying patients. Such an approach incorporates essential content without adding to already extensive nursing curricula.     

Oral health‐related quality of life and dental status in an outpatient psychiatric population: A multivariate approach

Research related to oral health in people with mental health problems may deepen our understanding of the quality of life of such individuals. This study aimed to investigate the relationship between oral status, health perceptions and life satisfaction, and their impacts on oral health‐related quality of life (OHQoL). Data were collected from 113 patients in outpatient psychiatric care using a structured interview and an oral examination. Six multivariate models (one comprising the total population, three separate diagnostic groups, and two sex groups) investigated the variance in OHQoL. In the total population, the number of teeth, subjective life satisfaction, perception of physical health, sex, and relying on chance accounted for 40% of the variance. In the group consisting of patients diagnosed with schizophrenia 41% of the variance was explained by the variables ‘number of teeth’ and ‘perception of physical health’. In the group diagnosed with mood disorders, the variable ‘number of teeth’ accounted for 58% of the variance. The variance in the remaining group of diagnoses was explained, up to 38%, by life satisfaction and reliance on chance. The sex models revealed significant differences: men considered the responsibility of caring for their oral health as a health matter, while women saw oral health as a more subjective issue. The perception of OHQoL was found to be dependent on the particular psychiatric diagnosis and sex. Such findings can be of use in the development of rehabilitation, as well as preventive strategies that could be individually tailored to maintain OHQoL and oral health.     

The Bite of a Wolf: Systemic Lupus Erythematosus

Systemic lupus erythematosus (SLE) is a chronic inflammatory disease of unknown etiology that occurs in people who have an aberrant immune system; it affects most major organ systems. People with SLE vacillate between periods of remission and exacerbation, with symptoms of fatigue and chronic pain, and experience disturbances in self-concept. SLE no longer has the high mortality rate of past years due to improved diagnostic tests that allow for earlier detection and treatment. SLE is a complex disease that affects the individual and the family. Rehabilitation nurses should use a holistic approach to treat altered functional ability and help individuals adjust to lifestyle changes associated with chronic illness and/or disability. Nurses with specialized rehabilitation knowledge and skill can help individuals with SLE realize and reach their optimal level of functioning, and thus improve their quality of life.     

银屑病患者患病体验的质性研究

目的探讨银屑病患者的患病体验。方法目的性抽样选择9名住院治疗的银屑病患者进行半结构式访谈,了解患者的患病体验,用Colaizzi内容分析法对资料进行分析。结果共提取就医经历坎坷、对患者的影响、应对方式、社会支持和患者的期望等5个主题:银屑病患者在患病期间体验到就医经历坎坷;对患者的生理-心理-社会方面均造成影响;患者采取的应对方式为自主学习疾病知识、调整行为习惯、回避与自我保护;患者体会到来自家人、朋友和病友的社会支持;患者期望能治愈疾病并得到医生更多的关心。结论建议加强对患者的健康教育和社会支持,做好心理辅导,建立随访制度,以使银屑病患者正确认识疾病,对治疗结果有恰当的预期,提高治疗依从性,避免非正规治疗。     

Practitioners’ use of shared concepts in anthroposophic pain rehabilitation

Purpose: To elucidate the meaning of anthroposophic practitioners’ conceptualizations of caring for persons living with chronic pain.

Methods: Interviews were conducted with 15 practitioners working with rehabilitation of persons with chronic pain at an anthroposophic hospital in Sweden. The interviews were analyzed using a phenomenological hermeneutical method.

Findings: When practitioners discussed patient care, they used a shared language with particular concepts. Concepts, such as “trauma,” “self,” and “life intention,” were interpreted as a means of understanding persons with pain and their current life situation. The meaning of the concepts also had explicit or implicit implications for the caring process, e.g., the concept “caring shelter” referred to an inherent and continuous part of the caring culture enabling patients’ own exploration of their life and suffering and the meaning of their pain in the context of their lives.

Conclusions: The practitioners’ use of a conceptual language is here interpreted as a sign of a shared “caring culture” that enabled them to understand patients and their suffering from an existential perspective. A reciprocal understanding within a caring culture may extend the abilities of practitioners to engage in a dialog with patients about life and health as intertwined with the phenomenon of pain.

• Implications for rehabilitation

• In the rehabilitation process, health practitioners’ language may contribute to shaping a caring culture that emphasis an understanding of patients’ needs of health.

• Shared concepts in rehabilitation might increase health practitioners’ possibilities to support patients from broader and more personalized perspectives, involving not only biopsychosocial aspects but also existential dimensions.

• The shared conceptual understanding of anthroposophic practitioners in this study may serve as an example to practitioners in other pain rehabilitation settings, developing a contextual understanding of their central concepts, and caring values.