Karin Dahlberg

Lifeworld-led healthcare is more than patient-led care: an existential view of well-being

In this paper we offer an appreciation and critique of patient-led care as expressed in current policy and practice. We argue that current patient-led approaches hinder a focus on a deeper understanding of what patient-led care could be. Our critique focuses on how the consumerist/citizenship emphasis in current patient-led care obscures attention from a more fundamental challenge to conceptualise an alternative philosophically informed framework from where care can be led. We thus present an alternative interpretation of patient-led care that we call ‘lifeworld-led care’, and argue that such lifeworld-led care is more than the general understanding of patient-led care. Although the philosophical roots of our alternative conceptualisation are not new, we believe that it is timely to re-consider some of the implications of these perspectives within current discourses of patient-centred policies and practice. The conceptualisation of lifeworld-led care that we develop includes an articulation of three dimensions: a philosophy of the person, a view of well-being and not just illness, and a philosophy of care that is consistent with this. We conclude that the existential view of well-being that we offer is pivotal to lifeworld-led care in that it provides a direction for care and practice that is intrinsically and positively health focused in its broadest and most substantial sense.

Non-caring encounters at an emergency care unit – a life-world hermeneutic analysis of an efficiency-driven organization

The aim of this study was to analyse and describe non-caring encounters at an emergency care unit (ECU). The research approach was life-world hermeneutics, and the research question was: what are the conditions leading to non-caring encounters at an ECU? Nine nurses and nine patients were interviewed. The interpretative analysis reveals an adaptation to organisational demands for efficiency, on the part of both nurses and patients. This form of adaptation seems to constitute a precondition for a well-functioning ECU. Furthermore, a comparison with a study of the intersubjective aspects of caring for aggressive patients reveals unexpected similarities: the carers are absent in both contexts. In nursing education and ECU-practice caring competence must thus include capacity to be present when patients express their needs worries and questions about care.

'The individual in the world - the world in the individual' : towards a human science phenomenology that includes the social world

Abstract Human science researchers tend to be targeted for critique on the grounds that their approach is too individualistic to take due cognisance of societal and political influences. What is accordingly advocated is that the phenomenological and so-called romantic theories should be abandoned in favour of analytic or continental theories that have as their main focus the system, the group, the society, and the various influences of the social world on the existential reality of the individual. Without trying to invalidate these social science strategies, this paper attempts to show that it is not necessary to surrender phenomenology in order to understand not only the individual, but also the social world in which individuals live. It is argued that the desired goal of a less individualistic human science’s theoretical basis can still be founded in phenomenology, in that Merleau-Ponty’s philosophy, which has its origin in Husserlian phenomenology, provides us with an adequate ontology for understanding human existence more comprehensively. Merleau-Ponty’s ontological philosophy elucidates the in-between world, that structure of existence where the individual cannot be separated from her/his world context. In his exploration of the reversibility of existence, Merleau-Ponty demonstrates that there is no ontological gulf between the individual and the social world. Instead, the world is ‘in’ the individual as much as the individual is ‘in’ the world. With this phenomenological epistemology, it is argued, it is possible to generate research that is capable “of more than a frozen existence”, as Merleau-Ponty puts it.

“Caring for insiderness”: Phenomenologically informed insights that can guide practice

Understanding the “insider” perspective has been a pivotal strength of qualitative research. Further than this, within the more applied fields in which the human activity of “caring” takes place, such understanding of “what it is like” for people from within their lifeworlds has also been acknowledged as the foundational starting point in order for “care” to be caring. But we believe that more attention needs to be paid to this foundational generic phenomenon: what it means to understand the “insiderness” of another, but more importantly, how to act on this in caring ways. We call this human phenomenon “caring for insiderness.” Drawing on existing phenomenological studies of marginal caring situations at the limits of caring capability, and through a process of phenomenologically oriented reflection, we interrogated some existential themes implicit in these publications that could lead to deeper insights for both theoretical and applied purposes. The paper provides direction for practices of caring by highlighting some dangers as well as some remedies along this path.

Interpreters in Cross-Cultural Interviews A Three-Way Coconstruction of Data

Our focus in this article is research interviews that involve two languages. We present an epistemological and methodological analysis of the meaning of qualitative interviewing with an interpreter. The results of the analysis show that such interviewing is not simply exchanging words between two languages, but means understanding, grasping the essential meanings of the spoken words, which requires an interpreter to bridge the different horizons of understanding. Consequently, a research interview including an interpreter means a three-way coconstruction of data. We suggest that interpreters be thoroughly introduced into the research process and research interview technique, that they take part in the preparations for the interview event, and evaluate the translation process with the researcher and informant after the interview.

Experiencing Out-of-Hospital Cardiac Arrest: Significant Others’ Lifeworld Perspective

When patients suffer out-of-hospital cardiac arrests (OHCA), significant others find themselves with no choice about being there. After the event they are often left with unanswered questions about the life-threatening circumstances, or the patient’s death, or emergency treatment and future needs. When it is unclear how the care and the event itself will affect significant others’ well-being, prehospital emergency personnel face ethical decisions. In this article we describe the experiences of significant others present at OHCA, focusing on ethical aspects and values. Using a lifeworld phenomenological approach, 7 significant others were interviewed. The essence of the phenomenon of OHCA can be stated as unreality in the reality, which is characterized by overwhelming responsibility. The significant others experience inadequacy and limitation, they move between hope and hopelessness, and they struggle with ethical considerations and an insecurity about the future.The study findings show how significant others’ sense of an OHCA situation, when life is trembling, can threaten values deemed important for a good life.

Balancing between closeness and distance: emergency medical services personnel's experiences of caring for families at out-of-hospital cardiac arrest and sudden death

INTRODUCTION Out-of-hospital cardiac arrest (OHCA) is a lethal health problem that affects between 236,000 and 325,000 people in the United States each year. As resuscitation attempts are unsuccessful in 70-98% of OHCA cases, Emergency Medical Services (EMS) personnel often face the needs of bereaved family members. PROBLEM Decisions to continue or terminate resuscitation at OHCA are influenced by factors other than patient clinical characteristics, such as EMS personnels knowledge, attitudes, and beliefs regarding family emotional preparedness. However, there is little research exploring how EMS personnel care for bereaved family members, or how they are affected by family dynamics and the emotional contexts. The aim of this study is to analyze EMS personnels experiences of caring for families when patients suffer cardiac arrest and sudden death. METHODS The study is based on a hermeneutic lifeworld approach. Qualitative interviews were conducted with 10 EMS personnel from an EMS agency in southern Sweden. RESULTS The EMS personnel interviewed felt responsible for both patient care and family care, and sometimes failed to prioritize these responsibilities as a result of their own perceptions, feelings and reactions. Moving from patient care to family care implied a movement from well-structured guidance to a situational response, where the personnel were forced to balance between interpretive reasoning and a more direct emotional response, at their own discretion. With such affective responses in decision-making, the personnel risked erroneous conclusions and care relationships with elements of dishonesty, misguided benevolence and false hopes. The ability to recognize and respond to peoples existential questions and needs was essential. It was dependent on the EMS personnels balance between closeness and distance, and on their courage in facing the emotional expressions of the families, as well as the personnels own vulnerability. The presence of family members placed great demands on mobility (moving from patient care to family care) in the decision-making process, invoking a need for ethical competence. CONCLUSION Ethical caring competence is needed in the care of bereaved family members to avoid additional suffering. Opportunities to reflect on these situations within a framework of care ethics, continuous moral education, and clinical ethics training are needed. Support in dealing with personal discomfort and clear guidelines on family support could benefit EMS personnel.

To be Strategically Struggling against Resignation: The Lived Experience of Being Cared for in Forensic Psychiatric Care

To be referred to care in forensic psychiatric services can be seen as one of the most comprehensive encroachments society can impose upon a persons life, as it entails a limitation of the individuals freedom with no time limit. This study focuses upon patients’ experiences of their life situation in forensic psychiatric wards. Using a Reflective Lifeworld Research approach founded in phenomenology, we analysed 11 qualitative interviews with patients cared for on a maximum security unit in a Swedish forensic psychiatric service. Results show how forensic psychiatric care can be non-caring with only moments of good care, from the patients perspective. By using different strategies, the patients attempt to adapt to the demands of the caregivers in order to gain privileges. At the same time the patients are lacking meaningful and close relationships and long to get away from the system of forensic care. Being cared for entails struggling against an approaching overwhelming sense of resignation.

Being in-between and lost in the discharge process : An excursus of two empirical studies of older persons', their relatives', and care professionals' experience

The discharge process (DP) is full of well-known risks, and a comprehensive and well-executed DP is especially important for older people with multiple health problems and continuing care needs, as well as for their relatives. Few studies focus on the experiences with the DP by older people in need of home care nursing and their relatives. Therefore, the aim was to deepen the understanding of the DP as a phenomenon described by older people, their relatives, and care professionals. The method is an excursus of the findings of two previously published research studies. By using the Reflective Lifeworld Research approach, the empirical findings were further interpreted with lifeworld theory. The results describe the essential meaning of the phenomenon of DP in relation to healthcare needs. The illness and the DP can be viewed as a course of action where the familiar becomes unfamiliar for older people and their relatives, entailing an insecure future existence characterized by the experience of being in-between. The DP is marked by bodily and existential needs. The older persons and their relatives are lost in the hospital context and trying to influence life and adapt to life circumstances, while being relentlessly dependent on care professionals. Care professionals work from both an organizational and a medical approach. Disharmony and disagreement seem to arise easily among the professionals regarding the planning negatively affecting the patients and their relatives. More efforts are needed in the DP to empower older people and their relatives to go on with their life at home. The caring practice needs to more clearly meet and address the individual needs of older people and their relatives and their understanding of their illness. It needs to give them lifeworld and life goals to alleviate their suffering and to help them adjust to their new situation.The discharge process (DP) is full of well-known risks, and a comprehensive and well-executed DP is especially important for older people with multiple health problems and continuing care needs, as well as for their relatives. Few studies focus on the experiences with the DP by older people in need of home care nursing and their relatives. Therefore, the aim was to deepen the understanding of the DP as a phenomenon described by older people, their relatives, and care professionals. The method is an excursus of the findings of two previously published research studies. By using the Reflective Lifeworld Research approach, the empirical findings were further interpreted with lifeworld theory. The results describe the essential meaning of the phenomenon of DP in relation to healthcare needs. The illness and the DP can be viewed as a course of action where the familiar becomes unfamiliar for older people and their relatives, entailing an insecure future existence characterized by the experience of being in-between. The DP is marked by bodily and existential needs. The older persons and their relatives are lost in the hospital context and trying to influence life and adapt to life circumstances, while being relentlessly dependent on care professionals. Care professionals work from both an organizational and a medical approach. Disharmony and disagreement seem to arise easily among the professionals regarding the planning negatively affecting the patients and their relatives. More efforts are needed in the DP to empower older people and their relatives to go on with their life at home. The caring practice needs to more clearly meet and address the individual needs of older people and their relatives and their understanding of their illness. It needs to give them lifeworld and life goals to alleviate their suffering and to help them adjust to their new situation.

The Meaning of Close Relationships and Sexuality: Women's Well-Being Following a Myocardial Infarction:

Relationships and sexuality following heart attack (MI) have been studied; nevertheless, little is known about the meaning of social support and relationships to health and well-being after an MI. To our knowledge, no qualitative studies have further investigated the phenomenon. In this study we explore the meaning of close relationships and sexuality to womens health and well-being following MI. Ten women were interviewed using a reflective lifeworld approach and phenomenological epistemology. The meaning of womens close relationships following an MI appears to be closely intertwined with their long-term health process; both health processes and the relationships are affected. Suffering after an MI can be compared to taking a fall in that close relationships can become a safety net. Close relationships and sexuality are integrated into their lived bodies, and in that way have profound influence in their lifeworld experiences. Not all close relationships are intimate; however, all close and meaningful relationships can provide power and strength to the womens health processes. At the same time, these relationships also appear to drain energy and cause suffering.