Intensive care nurses' lived experience of altruism and sacrifices during the Covid-19 pandemic: A phenomenological study.

AIM: The aim of this study was to understand the lived experience of altruism and sacrifices among Swedish nurses working in intensive care units (ICU) during the COVID-19 pandemic. DESIGN: This was a descriptive phenomenological study. METHODS: The study was conducted between June 2020 and March 2021 and included 20 nurses who were directly involved in the ICU care of COVID-19 patients in Sweden during the pandemic. The text transcripts were analysed using Malterud's Systematic Text Condensation. FINDINGS: The analysis revealed four themes. The work situation changed from 1 day to another-the nurses were brutally confronted with a new and highly demanding situation. Adapting to the chaotic situation-despite fear, anguish and exhaustion, the nurses adapted to the new premises. They shouldered the moral responsibility and responded to the needs of the patients and the health care system since they had the competence. Being confronted with ethical and moral challenges-the nurses were overwhelmed by feelings of helplessness and inadequacy because despite how hard they worked, they were still unable to provide care with dignity and of acceptable quality. The importance of supporting each other-collegiality was fundamental to the nurses' ability to cope with the situation. CONCLUSIONS: Taken together, being exposed to a constantly changing situation, facing the anguish and misery of patients, families, and colleagues, and being confronted with a conflict between the moral obligation to provide care of high quality and the possibility to fulfil this commitment resulted in suffering among the nurses. Collegial back-up and a supportive culture within the caring team were important for the nurses' endurance. IMPACT: The study contributes an understanding of nurses' lived experience of working during the COVID-19 pandemic and highlights the importance of protecting and preparing nurses and nursing organisation for potential future crises.

Empathy, sympathy, and altruism-An evident triad based on compassion. A theoretical model for caring.

BACKGROUND: Based on existing confusion and a suggested contradiction regarding empathy and compassion in relation to caring science as well as in clinical health care. AIM: The aim of the study was to find a knowledge base for the development of clinical caring science for, empathy, sympathy altruism, and compassion and their mutual relationship. DESIGN: A theoretical paper. RESULTS: The text discusses the different concepts separately, considering their history, research, obstacles, and bias and then brings them together in a concept model. The conclusion shows that empathy, sympathy, and altruism have no contradictions. Instead, they together form an evident triad based on compassion. Compassion is a prerequisite and a basis for the others to work. In clinical application, empathy is metaphorically a quality coming from the head, sympathy from the heart and altruism from the hand, merged in an attitude of compassion as a motif to care. The paper also reflects on the possibilities to increase and develop a compassionate mood and capacity by education and training.

Spontaneous ethics in nurses' willingness to work during a pandemic.

Background: In modern healthcare, the role of solidarity, altruism and the natural response to moral challenges in life-threatening situations is still rather unexplored. The COVID-19 pandemic provided an opportunity to obtain a deeper understanding of nurses' willingness to care for patients during crisis.Objective: To elucidate clinical expressions of ontological situational ethics through nurses' willingness to work during a pandemic.Research design, participants and context: A qualitative study with an interpretive design was applied. Twenty nurses who worked in intensive care unit at two Swedish hospitals during the first, second, and third waves of the COVID-19 pandemic were interviewed. The analysis was interpretative and applied a theoretical ethics perspective.Ethical considerations: The study was approved by the Swedish Ethical Review Authority and informed consent was obtained from all participants.Findings: From a philosophical perspective, the nurses expressed sovereign life expressions of mercy and compassion, which arose spontaneously in response to seeing vulnerable fellow humans. They referenced ''the nurse inside me'' and their choice of profession as motives to provide care. Ontological situational ethics in culture and norms were noted in the constructs of competence, responsibility, solidarity with colleagues and organization; and interest and learning were driving forces. Ethical demand was evident when nurses expressed ideas of meaningfulness in helping their fellow humans; but themes of ambiguity, exhaustion and unwillingness were also present.Conclusions: The nurses showed a high willingness to care for patients during a crisis. Responding to the ethical demand and to care for vulnerable human beings while risking their own health and lives could be interpreted as an inter-human vocation. These spontaneous altruistic actions saved the lives of many patients during the pandemic and need to be understood and supported.

Health and suffering are associated with social support: a cross-sectional study of women and mothers with exhaustion and pain.

BACKGROUND: Despite women are generally overrepresented in behavioral, mental, and musculoskeletal disorders, motherhood as a central part of women's life is poorly understood in relation to exhaustion and long-lasting pain. Mothers' health impairments imply suffering both for herself and her family. A profound understanding of health is needed taking mothers' subjective health experience, their suffering and life situation into account to give women, their families and society better prerequisites to alleviate exhaustion and long-lasting pain. The aim of the study was to describe health and suffering of women and mothers undergoing rehabilitation for long-lasting pain and exhaustion and its correlation with perceived social support. METHODS: The study had a cross-sectional design with an exploratory approach. A main sample consisted of 166 women undergoing rehabilitation for exhaustion and long-lasting pain and a reference sample included 129 women working and studying within health care professions. Both samples included women with and without children. Women's subjective health and suffering was assessed from a caring science perspective using the recently developed and validated Health and Suffering Scale. Two additional scales measuring exhaustion and social support were distributed among the two samples. Descriptive statistics and multiple linear regression models, including health and suffering and perceived social support, were analyzed. RESULTS: Mothers undergoing rehabilitation for pain and exhaustion reported significantly poorer health and more suffering compared to healthy mothers, but similar health and suffering when compared with childless women in rehabilitation. Health and suffering were correlated with perceived social support among both healthy and exhausted mothers. In both samples, the correlation between health and suffering and social support was stronger among mothers than among women without children. CONCLUSIONS: Women and mothers living with exhaustion and long-lasting pain show signs of unbearable suffering and perceived insufficient social support. Social support from various sources particularly helps mothers to create meaning in life and make their suffering bearable. Hence, health care must address the fact that mothers are dependent on their immediate social environment and that this dependency interacts with their health and suffering on an existential level.

Women's Lived Experiences of Chronic Pain: Faces of Gendered Suffering.

Women are overrepresented in pain rehabilitation. They seem to be more exposed to comorbidity between mental illness and diseases of the musculoskeletal system than men, implying that besides biopsychosocial factors, gender relations and cultural context should be considered. The aim of the study is to understand the lived experience of women with chronic pain from a caring science and gender perspective. Gadamerian philosophical hermeneutics has been used to analyze interviews from 21 women living with chronic pain in Sweden. The hermeneutical process revealed intertwined experiences of overperformance, loneliness, pain, and exhaustion. Women's experience of an overwhelming life situation and the significance of mutual dependency seem to be central to health and suffering in women with chronic pain. We suggest, contemporary health care to acknowledge women's health and suffering in relation to their life situation and prevailing gender roles.

The ambiguity of altruism in nursing: A qualitative study.

BACKGROUND:: For a long time, altruism was the basis for caring. Today, when society is more individualized, it is of interest to explore the meaning of altruism in nursing. METHODS:: In all, 13 nurses from a Swedish acute care setting participated in two focus group interviews performed as Socratic dialogues. Data were analyzed using a phenomenological hermeneutical method. ETHICAL CONSIDERATIONS:: Ethical issues were considered throughout the process according to established ethical principles. Informed consent was obtained from all participants, confidentiality regarding the data was guaranteed and quotations anonymized. FINDINGS:: Altruism created a sense of ambivalence and ambiguity, described as a rise of sovereign expressions of life caused by "the other's" need, but also unwillingness to take unconditional responsibility for "the other." CONCLUSION:: Society's expectations of altruism and nurses' perception of their work as a salaried job collide in modern healthcare. Nurses are not willing to fully respond to the ethical demand of the patients. In case of a disaster, when nurses personal safety, life and health may be at risk, there might be reasons to question whether the healthcare organization would be able to fulfill its obligations of providing healthcare to an entire population.

Measuring patients' health and suffering - the first stages of instrument development.

BACKGROUND: Patients have reported unanticipated and transformative health changes in existential character after integrative healthcare rehabilitation. Although there are several instruments measuring patients' experiences of health, identified instruments do not sufficiently capture patients' experiences of health and suffering after integrative health care. From a caring science perspective, health and suffering are understood as an integral part of human life. The objective of this study was to develop a first version of an instrument to measure patients' experiences of health and suffering, focusing on existential signs. METHODS: This Swedish study used a methodological design with three iterative phases for instrument development. Firstly, an item pool was developed based on qualitative patient interviews (n = 64). Subsequently, the relevance of the items was explored in two rounds of cognitive patient interviews (n = 5 and n = 3). Finally, expert consultations (n = 5) were used to further refine the instrument. The construct of the instrument, its dimensions and domains emerged through the iterative development process. RESULTS: The first phase development of the instrument resulted in two inter-related overarching dimensions: existential signs of 'Health' and 'Suffering', characterised by five domains: 'Life passion and energy', 'Personal freedom', 'Relationships', 'Presence in life' and 'Meaning'. Instrument items were formulated using contemporary language and word pairs to reflect a movement and relation between health and suffering. The cognitive interviews and expert opinions helped refine items and domains. CONCLUSIONS: The dimensions, domains and items of the instrument 'Existential signs of health and suffering' are well represented in caring science theories. Further clinical implementation and evaluation of the instrument, including psychometric properties, will allow for greater diversity in terms of context generalisability and patient characteristics. The instrument is anticipated to be of value for evaluations in research, development of healthcare practice and theory development in caring science.

Clinical caring science as a scientific discipline.

BACKGROUND: Clinical caring science will be described from a theory of science perspective. AIM: The aim of this theoretical article to give a comprehensive overview of clinical caring science as a human science-based discipline grounded in a theory of science argumentation. FINDINGS: Clinical caring science seeks idiographic or specific variations of the ontology, concepts and theories, formulated by caring science. The rationale is the insight that the research questions do not change when they are addressed in different contexts. The academic subject contains a concept order with ethos concepts, core and basic concepts and practice concepts that unites systematic caring science with clinical caring science. In accordance with a hermeneutic tradition, the idea of the caring act is based on the degree to which the theory base is hermeneutically appropriated by the caregiver. The better the ethos, essential concepts and theories are understood, the better the caring act can be understood. In order to understand the concept order related to clinical caring science, an example is given from an ongoing project in a disaster context. COMPREHENSIVE REFLECTION: The concept order is an appropriate way of making sense of the essence of clinical caring science. The idea of the concept order is that concepts on all levels need to be united with each other. A research project in clinical caring science can start anywhere on the concept order, either in ethos, core concepts, basic concepts, practice concepts or in concrete clinical phenomena, as long as no parts are locked out of the concept order as an entity. If, for example, research on patient participation as a phenomenon is not related to core and basic concepts, there is a risqué that the research becomes meaningless.

Caring touch as a bodily anchor for patients after sustaining a motor vehicle accident with minor or no physical injuries - a mixed methods study.

BACKGROUND: Patients who sustain a motor vehicle accident may experience long-term distress, even if they are uninjured or only slightly injured. There is a risk of neglecting patients with minor or no physical injuries, which might impact future health problems. The aim of this study was to explore patients' subjective experiences and perspectives on pain and other factors of importance after an early nursing intervention consisting of "caring touch" (tactile massage and healing touch) for patients subjected to a motor vehicle accident with minor or no physical injuries. METHODS: A mixed method approach was used. The qualitative outcomes were themes derived from individual interviews. The quantitative outcomes were measured by visual analogue scale for pain (VAS, 0-100), sense of coherence (SOC), post-traumatic stress (IES-R) and health status (EQ-5D index and EQ-5D self-rated health). Forty-one patients of in total 124 eligible patients accepted the invitation to participate in the study. Twenty-seven patients completed follow-up after 6 months whereby they had received up to eight treatments with either tactile massage or healing touch. RESULTS: Patients reported that caring touch may assist in trauma recovery by functioning as a physical "anchor" on the patient's way of suffering, facilitating the transition of patients from feeling as though their body is "turned off" to becoming "awake". By caring touch the patients enjoyed a compassionate care and experience moments of pain alleviation. The VAS pain ratings significantly decreased both immediately after the caring touch treatment sessions and over the follow-up period. The median scores for VAS (p < 0.001) and IES-R (p 0.002) had decreased 6 months after the accident whereas the EQ-5D index had increased (p < 0.001). There were no statistically significant differences of the SOC or EQ-5D self-rated health scores over time. CONCLUSIONS: In the care of patients suffering from a MVA with minor or no physical injuries, a caring touch intervention is associated with patients' report of decreased pain and improved wellbeing up to 6 months after the accident. TRIAL REGISTRATION: ClinicalTrials.gov Id: NCT02610205 . Date 25 November 2015.

Self-care follows from compassionate care - chronic pain patients' experience of integrative rehabilitation.

The long-term outcome of any intervention for people suffering from chronic pain relies on the patient's ability for self-care. This study explores patient experiences of self-care in relation to a rehabilitation programme at an anthroposophic clinic. In a qualitative interview study with a hermeneutic approach, individual interviews were conducted, recorded, transcribed verbatim and analysed. Interviews were conducted with ten women who were taking part in a year-long rehabilitation programme for chronic pain and overlapping illness. The women told stories of suffering with a focus on lives that were not functioning well. In this context, pain is like secondary. For many, the experience of loving care at the clinic became a turning point, a chance to be vulnerable, to be recognised, to reflect and to begin life anew. Signs of self-care could then be witnessed. The women described a process whereby they regained contact with their bodies and their fellow human beings; they were able to identify their needs and when to stand up for them. Everyday life at the clinic is guided by universal aspects of love, life and meanings. The care gives patients glimpses of a move towards community in contrast to past isolation, towards love in contrast to past alienation, and towards joy and inspiration in contrast to past suffering. Through receiving caritative and compassionate care, these women were able to identify their needs as a first step towards self-care. In the context of chronic pain, self-care needs to be more than advice, education and training. Health can be attained when the sufferer experiences what it is to be cared for. This study supports the potential of a caritative caring culture to help patients participate in a compassionate community both with others and with the self. This forms the basis for the reawakening of their natural self-care ability.

Dressing an existential wound (DEW) - a new model for long-term care following disasters.

BACKGROUND: Presence, concern, compassion and universal or ontological unity between human beings have emerged as crucial to the healthy development of people who have experienced disasters. AIM AND OBJECTIVES: The aim of this article was to present a new model for long-term care following disasters. The objective of the model was to contribute to the readiness for long-term care following disasters in professionals and nonprofessionals as a result of their understanding of the model. DESIGN: A longitudinal qualitative study of Swedish tourists affected by the South East Asian tsunami in 2004 is the empirical base for this clinical model, which was developed within the framework of caring science. METHODS: A hermeneutic method was used. RESULTS: The model is based on the assumption that life issues are an important aspect of long-term follow-up after a disaster. The term 'life issues' refers to the following: existential questioning of life's content, values and priorities; people's relationships with each other; and the importance of health, suffering, love and death. Life issues also refer to the way in which survivors form a new understanding of life after a disaster experience. Existential care is based on a charitable attitude of compassion and mercy towards one's fellows, be they professionals, families or wider society. By presenting eight theses, the model provides an approach based on compassion that works as an existential dressing for survivors of disaster. CONCLUSIONS: The model gives a knowledge base and approach for the long-term care of survivors, including practical advice.

Motivation does not come with an ending--it's the beginning of something new: experiences of motivating persons with psychiatric disabilities to physical activity.

Despite strong evidence for the positive relationship between physical activity and mental health, physical activity is used far too little to promote health in mental health care. Fourteen caregivers working in community mental health services were interviewed about their experiences of motivating adult persons with psychiatric disabilities to be physically active, and data were analysed using a phenomenological-hermeneutical approach. Three themes emerged: (1) An approach of conscious acts, (2) Companionship as a joint creation, and (3) Understanding as a way to create meaning. The interpreted meaning of motivating to physical activity was expressed as a dynamic way of being, relating, and understanding.

Strengthening practical wisdom: mental health workers' learning and development.

BACKGROUND: Practical wisdom, understood as knowing how to be or act in any present situation with clients, is believed to be an essential part of the knowledge needed to be a professional mental health worker. Exploring processes of adapting, extending knowledge and refining tacit knowledge grounded in mental health workers' experiences with being in practice may bring awareness of how mental health workers reflect, learn and practice professional 'artistry'. RESEARCH QUESTION: The aim of the article was to explore mental health workers' processes of development and learning as they appeared in focus groups intended to develop practical wisdom. The main research question was 'How might the processes of development and learning contribute to developing practical wisdom in the individual as well as in the practice culture?' RESEARCH DESIGN: The design was multi-stage focus groups, and the same participants met four times. A phenomenological hermeneutical method for researching lived experience guided the analysis. PARTICIPANTS AND CONTEXT: Eight experienced mental health workers representing four Norwegian municipalities participated. The research context was community-based mental health services. ETHICAL CONSIDERATIONS: The study was reported to Norwegian Social Data Services, and procedures for informed consent were followed. FINDINGS: Two examples of processes of re-evaluation of experience (Association, Integration, Validation, Appropriation and Outcomes and action) were explored. The health workers had developed knowledge in previous encounters with clients. In sharing practice experiences, this knowledge was expressed and developed, and also tested and validated against the aims of practice. Discussions led to adapted and extended knowledge, and as tacit knowledge was expressed it could be used actively. DISCUSSION: Learning to reflect, being ready to be provoked and learning to endure indecisiveness may be foundational in developing practical wisdom. Openness is demanding, and changing habits of mind is difficult. CONCLUSION: Reflection on, and confrontation with, set practices are essential to building practice cultures in line with the aims of mental health services.

Care culture as a meaning-making process: a study of a mistreatment investigation.

Culture might offer significant insights into the circumstances under which mistreatment occurs. Our aim with this study was to understand and explore institutional mistreatment from a care culture perspective. We used a case study with a triangulating methodology. It involved 12 individual interviews, one focus group interview with four people, a 2-day field study, and a document study. The case was a mistreatment situation that had occurred in municipal care, in which residents had been locked in their rooms at night. Two different care cultures were identified that could give a richer contextual understanding of the motives behind the institutional mistreatment. The service culture was need-oriented and emphasized freedom in care provision. The motherhood culture was characterized by protection and safeguarding of the vulnerable residents. Both cultures showed traces of caring values, but when important caring values were absent, this created a seedbed for mistreatment.

Aspects of care culture in municipal care for elderly people: a hermeneutic documentary analysis of reports of abuse.

INTRODUCTION: Care culture is an important contextual factor in care practice. Care culture refers to a process of creating meaning out of tradition, horizon and bildung. The care culture is often taken into consideration in situations that go beyond the everyday routine, such as cases of abuse. In Sweden, health care professionals are obliged to document and report any suspected bad conditions. Although the reports have the potential to communicate underlying values and assumptions about the care culture, such studies have not been performed. AIM: The aim of this study was to understand how elderly care abuse in institutions could be understood from a care culture perspective. DESIGN AND METHODS: A hermeneutic documentary analysis was conducted on 269 incident reports concerning suspected mistreatment of the elderly in three municipalities in Sweden. The hermeneutic analysis followed a four-stage process: selecting and reading the text, setting out the context, closing the hermeneutic circle, and finally creating a conceptual bridge towards a critical understanding from a phenomenological lifeworld perspective. FINDINGS: The care of the elderly in the municipality was based on a social culture that placed residents' needs at the centre. Following routines were considered important in preventing mistreatment and were intended to ensure that all patients were treated fairly and equally. Care was described as task oriented and often lacking in interpersonal relations. From a phenomenological lifeworld perspective, it was interpreted that in the municipalities' care of the elderly, there was a focus on elderly people's freedom at the expense of the vulnerability aspects of well-being. CONCLUSION: Raising awareness of the care culture underlying abuse could help to improve understanding of care practice. Change may be only possible when reflected on the existing perspectives underpinning the care culture, and integrate them into a broader framework for caring.

"We are all fellow human beings": mental health workers' perspectives of being in relationships with clients in community-based mental health services.

Stable, trusting relationships are at the core of Norwegian community-based mental health services. Being acknowledged and respected may promote a client's recovery. The aim of this study was to explore mental health workers' experiences of relating to clients. The design involved multi-stage focus groups based on a participatory approach and using interpretative phenomenological analysis. Acknowledging the personhood of a client appears to offer opportunities for growth and development in the client as well as in the health worker, based on reciprocal processes of each person affecting the other and the health workers' openness to understanding the other person.

Moving toward reclaiming life: lived experiences of being physically active among persons with psychiatric disabilities.

There is abundant documentation in research about the significant relationship between physical activity and mental health, but there is still more to be learned about what can enhance motivation to become more physically active. Fourteen persons with psychiatric disabilities were interviewed about their experiences of being physically active, and data was analyzed using a phenomenological-hermeneutic method. Five themes emerged: Capability for Living, Liberation from a Heavy Mind, Companionship in Being in Motion, Longing for Living One's Life, and Struggling with Limitations. The interpreted meaning of being physically active was to be moving toward reclaiming one's life.

Caring for children in pediatric intensive care units: an observation study focusing on nurses' concerns.

Children in the pediatric intensive care unit are indisputably in a vulnerable position, dependent on nurses to acknowledge their needs. It is assumed that children should be approached from a holistic perspective in the caring situation to meet their caring needs. The aim of the study was to unfold the meaning of nursing care through nurses' concerns when caring for children in the pediatric intensive care unit. To investigate the qualitative aspects of practice embedded in the caring situation, the interpretive phenomenological approach was adopted for the study. The findings revealed three patterns: medically oriented nursing--here, the nurses attend to just the medical needs, and nursing care is at its minimum, leaving the children's needs unmet; parent-oriented nursing care--here, the nursing care emphasizes the parents' needs in the situation, and the children are viewed as a part of the parent and not as an individual child with specific caring needs; and smooth operating nursing care orientation--here, the nursing care is focused on the child as a whole human being, adding value to the nursing care. The conclusion drawn suggests that nursing care does not always respond to the needs of the child, jeopardizing the well-being of the child and leaving them at risk for experiencing pain and suffering. The concerns present in nursing care has been shown to be the divider of the meaning of nursing care and need to become elucidated in order to improve the cultural influence of what can be seen as good nursing care within the pediatric intensive care unit.

Power relations in patient's experiences of suffering during treatment for cancer.

AIM: This paper is a report of how patients who have cancer experience suffering in the context of power relations. BACKGROUND: Many studies in Sweden and in other countries have detected inequality in healthcare use and resources, including unseen influences that can be connected to gender and distribution of resources. Few studies have examined how multiple relations of power - such as gender, ethnicity, age and education - influence how people with cancer experience suffering during treatment. METHOD: A hermeneutic design was used. Qualitative interviews were conducted with 12 women and 14 men receiving treatment for a variety of cancer diagnoses. The data collection was done at two hospitals in Sweden during 2008-2009. The interpretation of data was based on two theoretical perspectives - suffering and intersectionality. RESULTS: The results highlight patients suffering where two or more positions of power relations interacted with each other. Three main themes were identified: the complexity of control, the vulnerable effects of body changes, and the internal battle of survival. CONCLUSION: A vulnerable social situation for people with cancer concretely increased their suffering. Social inequalities, seemingly linked to social hierarchy, increased the suffering of people with cancer. For example, women with cancer with a low education belonging to an ethnic minority suffered more than highly educated patients belonging to the ethnic majority.

Significance of close relationships after the tsunami disaster in connection with existential health--a qualitative interpretive study.

BACKGROUND: In an existential health perspective, the potential for recovery and development through natural life circumstances provides a factor to be taken into account. Earlier research on disaster-stricken people indicates that people create their own ways of recovering and that natural caring encounters (with family or friends) imply important health factors. AIM: The aim of the study is to acquire an in-depth understanding of the significance of natural close relationships for survivors of the tsunami disaster in Southeast Asia in connection with the development of existential health and understanding of life in a long-term perspective. The sample consists of 19 persons afflicted by the 2004 tsunami in Southeast Asia, both Swedish tourists and relatives at home. Data were collected from interviews recurring five times during 2006. FINDINGS: What is evidently seen is how the ontological aspects are expressed in data in relation to the existential and relational aspects. In concrete terms, this is understood when survivors say that their lives are completely changed (an ontological turn in their understanding of life). A change also occurs in the way they relate to others (a concrete existential turn), for example, in their families. When the findings on communion as an utterance of interdependence were read comprehensively, it was seen that human encounters in the aftermath of a disaster are not only about relationships but inherently affect people's entire understanding of life both ontologically and existentially. Relationships with others and communion become a way of understanding or defining life. To conclude, in line with the aim of the study, the data suggest that relationships and communion with other people helped the survivors of the tsunami to discover a new understanding of life. It is also clear that natural encounters have had great importance for progress in existential health.