Sharing Experiences of Illness and Effectiveness of Asthma Therapy in Children This research deals with relationships between openness and opportunities to share asthma experiences between an ill child and close family, and effectiveness of medical therapy of asthma. Subjects were 58 children, between the age of 12-14, from the allergic outpatient clinic with a diagnosed bronchial asthma and under pharmacological therapy. Each child answered questions on frequency and satisfaction with talking with parents, or other close family members, on his (...) or her experiences related to asthma. A doctor conducting the therapy was asked to evaluate results of therapy, and intensity of the asthma, for each child. The data support the hypotheses that degree of sharing own asthma-related experiences with close persons correlates positively with effectiveness of therapy. This effect appears stronger among children with more severe asthma. (shrink)

This article aims to show how the development of aphenomenology ofthe lived bodyis of special interest for a philosophical elucidation of the illness thattakes charge of the patient’s perspective in its specific theoretical relevance. Startingfrom a critique of the Cartesian paradigm of the body-machine and the consequentde-emphasisof the personal experience of the disease, it will be shown how the phenomenological perspective allows us to account for the constituent elements ofthe illness experienced in the first person, such as (...) alteration or disintegration of the link I-body-world-others. Finally, the question of the physical, emotional and cognitive response to the disease and how phenomenological reflections on the disease convergein a reflection on identity, vulnerability, and recognition will be addressed. (shrink)

When invited to describe what the experience of illness taught them, a select group of bioethicists took eagerly to the task. This commentary culls three themes from their reflections: responsiveness to vulnerability, love as the proper motive for care, and reflective practice. U.S. bioethics was slow to appreciate the importance of recognizing and responding to human vulnerability. These essays describe its central importance for those suffering illness and make educating a more empathic and responsive generation of caregivers (...) a priority. Descriptions of how family and friendship bonds with an ill person created a unique sense of their inherent dignity and needs clearly raises the question of whether or not love is a necessary motive for professional caregivers. Will our professional care always fall short if not motivated by genuine human love? Finally, each essay teaches anew the importance of the life lessons human experience can teach if we value reflection and seek to experience, understand and learn from our experience. (shrink)

In this article we explore how diagnostic and therapeutic technologies shape the lived experiences of illness for patients. By analysing a wide range of examples, we identify six ways that technology can (trans)form the experience of illness (and health). First, technology may create awareness of disease by revealing asymptomatic signs or markers (imaging techniques, blood tests). Second, the technology can reveal risk factors for developing diseases (e.g., high blood pressure or genetic tests that reveal risks of falling (...) ill in the future). Third, the technology can affect and change an already present illness experience (e.g., the way blood sugar measurement affects the perceived symptoms of diabetes). Fourth, therapeutic technologies may redefine our experiences of a certain condition as diseased rather than unfortunate (e.g. assisted reproductive technologies or symptom based diagnoses in psychiatry). Fifth, technology influences illness experiences through altering social-cultural norms and values regarding various diagnoses. Sixth, technology influences and changes our experiences of being healthy in contrast and relation to being diseased and ill. This typology of how technology forms illness and related conditions calls for reflection regarding the phenomenology of technology and health. How are medical technologies and their outcomes perceived and understood by patients? The phenomenological way of approaching illness as a lived, bodily being-in-the-world is an important approach for better understanding and evaluating the effects that medical technologies may have on our health, not only in defining, diagnosing, or treating diseases, but also in making us feel more vulnerable and less healthy in different regards. (shrink)

A fundamental aim in caring practice is to understand patients' experiences of ill‐health. These experiences have a qualitative content and cannot, unlike thoughts and beliefs with conceptual content, directly be expressed in words. Nurses therefore face a variety of interpretive challenges when they aim to understand patients' subjective perspectives on disease and illness. The article argues that theories on social simulation can shed light on how nurses manage to meet these challenges. The core assumption of social simulationism is that (...) we do not understand other people by forming mental representations of how they think, but by putting ourselves in their situation in a more imaginative way. According to simulationism, any attempt to understand a patient's behavior is made on the basis of simulating what it is like to be that patient in the given context. The article argues that this approach to social interpretation can clarify how nurses manage to achieve aims of patient understanding, even when they have limited time to communicate and incomplete knowledge of patients' perspectives. Furthermore, simulation theory provides a normative framework for interpretation, in the sense that its theoretical assumptions constitute ideals for how nurses should seek to understand patients' experiences of illness. (shrink)

Background Preserving persons’ dignity is integral to nursing. More research is needed to explore how a diversity of patients, particularly those that experience illness from a young age, experience dignity. Aim Describe the characteristics of dignity for persons living with serious illness. Research design Using a secondary data set of twenty audio-recorded interviews, a thematic content analysis was conducted to identify characteristics of dignity. The research team employed van Gennip et al.’s, 2013 “Model of Dignity in (...) Illness” (1) to create a codebook, which the authors utilized to independently code twenty narrative interview transcripts. Participants and research context Twenty persons living with serious illness of heart failure and/or dialysis-dependent renal failure who were admitted in an acute care hospital. Ethical considerations This study was approved on August 26, 2019, by the Colorado Multiple Institutional Review Board (COMIRB) IRB Protocol #19-1874. Findings Early-onset participants expressed markedly different dignity concerns than late-onset participants. In the individual domain, early-onset participants felt that their illness was “normal”; they did not experience the “healthy person to patient” transition described by older onset participants. In the relational domain, early-onset participants expressed that their relationships had already integrated their illness while late-onset participants felt that their illness harmed many of their relationships. In the societal domain, early-onset participants described dignity concerns related to how society impacted their ability to financially support themselves during their illness. Discussion Differences in the dignity experience of early-onset and late-onset participants are informed by Erikson’s “Model of Development” and by Aranda and Jones feminist critique of dignity in healthcare. Conclusions Persons with early-onset illness experience dignity differently. Awareness of the importance of work and financial independence to the experience of dignity for seriously ill patients may enhance persons’ dignity experience. (shrink)

This essay argues that, while much has been gained by medicine's focus on the spatial aspects of disease in light of developments in modern pathology, too little attention has been given to the temporal experience of illness at the subjective level of the patient. In particular, it is noted that there is a radical distinction between subjective and objective time. Whereas the patient experiences his immediate illness in terms of the ongoing flux of subjective time, the physician (...) conceptualizes the illness as a disease state according to the measurements of objective time. A greater understanding of this disparity in temporal experiencing provides insights into the lived experience of illness and can preclude difficulties in communication between physician and patient. (shrink)

Non-fiction graphic novels about illness and death created by patients and their loved ones have much to teach all readers. However, the bond of empathy made possible in the comic form may have special lessons for healthcare providers who read these texts and are open to the insights they provide.

Modern gerontology has debunked the myth of old age as a period of inevitable decline. But what science has not been able to change is the reality that old age often is a time of illness and disability, particularly for the oldest old—those over age 85. The vaunted compression of morbidity hasn't happened; while the period of decline before death may have shrunk, it hasn't vanished. The trajectory in the last phase of life is rarely a precipice, with older (...) people living healthy lives until, abruptly, they fall off a cliff. Rather, it typically takes the form of a series of dips that return to an ever-lowering baseline or a slow fade.The... (shrink)

The lived body has structures of ability built up over time through habit. Serious illness, injury, and incapacity can disrupt these capacities, and thereby, one’s relationship to the body, and to time itself. This paper focuses attention on a series of healing strategies individuals then employ on the “chessboard” of possibilities intrinsic to lived embodiment. This can include restoring past abilities (pointing to the future to recreate the past); and/or transforming one’s bodily structure or use-patterns, or the external environment, (...) to compensate. With many conditions, including progressive aging, no full rehabilitation is possible. Nevertheless, one can also seek consolation, richness, or hope by remembering the past; anticipating the future; or presencing, that is, living fully in the now. Insofar as past, present, and future are interwoven in one’s life experience, many also meet adversity by a life-story revision, constructing a new narrative to render events meaningful. Some also access a sense of transpersonal timelessness, whether through anticipation of an afterlife, or a sense of the eternal present. There is a literature on the adaptive coping mechanism used by the chronically ill, but with its diverse patient populations, methodologies, and categories, it has proved difficult to systematize. This article suggests that the structures of lived embodiment, as explored by phenomenology, provide a way to understand the modes of wholeness individuals access over time, and in relation to time—what is here termed chronic healing. (shrink)

Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of the (...) presence or absence of persistent or recurrent disease; a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call “liminality”. We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient’s life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments. (shrink)

The experience of illness is a universal and substantial part of human existence. Like death, illness raises important philosophical issues. But unlike death, illness, and in particular the experience of being ill, has received little philosophical attention. In Phenomenology of Illness Havi Carel argues that the experience of illness has been wrongly neglected by philosophers and provides a distinctively philosophical account of illness. Using phenomenology, Carel explores how illness modifies the (...) ill person's body, values, and world. The aim of Phenomenology of Illness is twofold: to contribute to the understanding of illness through the use of philosophy and to demonstrate the importance of illness for philosophy. Phenomenology of Illness develops a phenomenological framework for illness and a systematic understanding of illness as a philosophical tool. (shrink)

In the context of the end of life, many authors point out how the experience of identity is crucial for the well-being of patients with advanced disease. They define this identity in terms of autonomy, control, or dependence, associating these concepts with the sense of personal dignity. From the perspective of the phenomenology of embodiment, Kay Toombs and other authors have investigated the ways disease can impact on the subjective world of patients and have stressed that a consideration of (...) this personal world can promote understanding and recognition of their experience. Based on the findings of qualitative studies of the perception of dignity and autonomy in patients at the end of life, this analysis assesses concepts such as being-in-the-world in illness, embodiment, lived body versus objective body or the gaze of the other from a Toombsian phenomenological perspective. (shrink)

With the Accreditation Council for GraduateMedical Education''s designation of professionalism as one of six corecompetencies in residency medical education,some educators of residents and medicalstudents believe that the concept ofprofessional role is too restrictive and narrowfor grappling with the complex dynamics ofprofessional–patient relationships. The ethicalquandaries of abortion and physician assistedsuicide illustrate how individual personalvalues cannot be ignored in the dynamicrelationship between health care professionaland patient. This article describes a medicalschool course where students are paired with patient mentors. Within the dynamic andintimate (...) relationship that unfolds over severalmonths, students explore the experience ofboundaries, and are invited to use thisexperience to consider their evolvingprofessional identity. (shrink)

This essay argues that philosophical phenomenology can provide important insights into the patient-physician relationship. In particular, it is noted that the physician and patient encounter the experience of illness from within the context of different "worlds", each "world" providing a horizon of meaning. Such phenomenological notions as focusing, habits of mind, finite provinces of meaning, and relevance are shown to be central to the way these "worlds" are constituted. An eidetic interpretation of illness is proposed. Such an (...) interpretation discloses certain essential characteristics that pertain to the experience of illness, per se , regardless of its manifestation in terms of a particular disease state. It is suggested that, if a shared world of meaning is to be constituted between physician and patient, the eidetic characteristics of illness must be recognized by the physician. Keywords: phenomenology, patient-physician relationship, illness-as-lived, habits of mind, relevance, eidetic CiteULike Connotea Del.icio.us What's this? (shrink)

As someone diagnosed with severe chronic mental illness early in my adolescence, I have spent over half of my life feeling out of step with the rest of the world due to hospitalizations, treatment programs, and the disruptions caused by anxiety, anorexia, depression, and obsessive–compulsive disorder. The effect of my mental health conditions compounded by these treatment environments means I often feel that I experience time passing differently, which results in sensations of removal and isolation from those around (...) me. The global shutdown caused by the COVID-19 pandemic seemed a way for normative bodies to experience the passing of time the way I always have. In this paper, I extend Dr. Sara Wasson’s analysis of the ways in which chronic pain resists narrative coherence to my own temporal experience of chronic mental illness, specifically my embodied experience of the pandemic. I use that embodied experience as a case study for examining how the reciprocal nature of time and narrativity, as outlined by Dr. Paul Ricoeur, can create isolation for those struggling with their temporality due to chronic mental illness. To acknowledge and grapple with the ramifications of discursive and material privilege involved in such situations, I include an analysis of Robert Desjarlais’s 1994 article “Struggling Along: The Possibilities for Experience among the Homeless Mentally Ill,” in which he investigates a similar phenomenon of being outside of structured sequential narrative time in the residents of a Boston shelter for the mentally ill. (shrink)

This article addresses the question of what it is that visual depictions of illness portray, particularly images executed by or on behalf of people who have suffered serious illness. It takes up two lines of inquiry, both to do with the work that such pictures might perform. On the one hand, as works of art, there are questions about the form of signification in visual representations of this kind. On the other, as works of illness, there are (...) issues concerning the role of image-making for sufferers bearing witness to their situation. The article examines the issue of what it is to look at pictures of bodies scarred by treatment for serious disease, and follows this into questions about what it is possible and necessary to show in order to render illness experience tangible. By examining, as exemplars, two particular images of sufferers, it is argued that such portrayals work not just through making visible certain objects for scrutiny, but by figuratively instantiating persons so as to produce a `vision of the non-visual'. In this way picturing illness finds its place in what might be called a politics of care. (shrink)

Phenomenology informs a number of contemporary attempts to give more weight to the lived experience of patients and overcome the limitations of a one-sidedly biomedical understanding of illness. Susan Bredlau has recently presented a reading of Plato’s dialogue Charmides, which portrays Socrates as a pioneer of the phenomenological approach to illness. I use a critical discussion of Bredlau’s interpretation of the Charmides to show that the phenomenology of illness also has its shortcomings and needs to be (...) complemented by still other approaches. While Bredlau does make a number of highly apt and relevant suggestions as to how a narrow biomedical approach to illness may be corrected, some of which are related to phenomenology, the attribution to Plato’s Socrates of a phenomenological approach is mistaken. Characteristically, Socrates shows little interest in the personal experience of a patient. He is more concerned with the patient’s lifestyle and conduct and so suggests an alternative or complementary perspective, stressing the importance of education and prevention to health care. (shrink)

In Phillip Kerr’s 1994 spellbinding novel A Philosophical Investigation, the medical test to which the protagonist refers is a functional brain scan based on positron emission tomography. It is used to run large studies of male and female brains and, following a lead suggested by animal studies, has been used to identify rare cases of human male subjects who lack the ventral medial nucleus. This nucleus, in the experiment, is hypothesized to inhibit the activity of the sexually dimorphic nucleus, a (...) preoptic area of the male brain believed to be a repository of male aggressive response. Prior research, we learn from the plot, shows that 3 in 100,000 human males are VMN-negative. Thirty percent of those affected are believed to be in prison or to have a criminal record; 70% are believed to stabilize levels of aggression by producing increased levels of estrogen. Identities of subjects participating in the brain scan studies are protected through the conversion of real names to those of famous figures of the past — Bertrand Russell, Charles Dickens. Those for whom results are unfavorable are recontacted, and they are offered counseling. (shrink)

BackgroundAll hospital trusts in Norway have clinical ethics committees. Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being involved in CEC discussions.MethodsTen next of kin of six seriously ill children were interviewed. Their cases were discussed in two CECs between April of 2011 and March of 2014. The main ethical dilemma was limitation of life-prolonging treatment. Health care personnel who (...) could elucidate the case were also present in the discussion. The interviewer observed each discussion and then interviewed the next of kin shortly after the meeting, following a structured interview guide.ResultsAll next of kin emphasized that it had been important for them to be present. They stressed the important role of the CEC chair and appreciated that their case was discussed in a systematic way. Some next of kin appreciated that the child’s impending death was discussed openly, and believed that this would facilitate their future grieving. Having had an opportunity to hear all the arguments behind the decision to be made would probably help them to accept the road ahead.All of them felt that they were taken seriously and listened to. They felt that they had added vital information to the discussion. All but one couple did not want any decision-making responsibility, some of them even worried that they might have influenced the discussion too much.ConclusionsNone of the next of kin felt that being present during the CEC discussion had been too heavy a burden. On the contrary, they claimed that their presence in a CEC discussion may add vital information to the discussion and may improve the quality of the decision. It is important that the CEC’s role is explained to them so they are well prepared for what to expect. They need to be followed up after the discussion. (shrink)

The first decisive steps of medicine towards becoming a science in its present shape happen to coincide with “the rise of the novel” in the eighteenth century. Before this well known and in our days still growing scientific specialization of medicine, the connections between literature and medicine were both many and close. By reading and analyzing a contemporary novel, The Death of a Beekeeper by the Swedish author Lars Gustafsson (1978), this article is an attempt to explore to which extent (...) a fictional narrative about a unique case of cancer may illuminate challenges associated with the experience of serious illness. Our claim is that medicine might draw wisdom from literature, its ability to create connections through narrative, to illuminate the complexity of ethical dilemmas, and to intertwine symptoms, life stories, and contexts. We argue that by being in the company of literary narratives and philosophical questions, physicians as well as other health care professionals may acquire clinically relevant skills which help them reach the ethically defined goals of their profession. (shrink)

Within the caring science paradigm, variations of a method of interpretation inspired by the French philosopher Paul Ricoeur's theory of interpretation are used. This method consists of several levels of interpretation: a naïve reading, a structural analysis, and a critical analysis and discussion. Within this paradigm, the aim of this article is to present and discuss a means of creating distance in the interpretation and the text structure by using narration in a poetic language linked to the meaning of the (...) text. Ricoeur's ‘Hermeneutical function of distanciation’ will be introduced, and this concept of distanciation will be illustrated with reference to narrations from a study of patient's life experiences living with chronic illness and home mechanical ventilation in Denmark. Distanciation in the interpretation objectifies the text, and narration in a poetic language creates a particular kind of mediation in the interpretation. That narration represents an interpreted understanding of the whole, which facilitates an appropriate and evocative presentation of the interpreted data. This way of objectifying the text through narration can contribute yet another perspective to Ricoeur's rich and varied theory of interpretation. (shrink)

In this paper, I am concerned with certain phenomenological contributions to person-centred practices in healthcare. I propose a meaning-centred phenomenological approach to illness and contrast it with certain body-centred and feeling-centred accounts. I suggest that the proposed approach complements, rather than competes with, these other accounts in the area of phenomenology of illness. This is illustrated, for example, by the way the proposed meaning-centred approach tackles certain general challenges to the phenomenology of illness. I pursue this approach (...) to develop an account of illness as involving a loss of meaning. However, I point out that at the heart of illness lies the possibility of resilience. Resilience is existentially understood as enacting a reconstruction of meaning. I point out that resilience and certain related cognitive mechanisms make well-being possible. Here, to be well is existentially understood as being able to find meaning in life. The phenomenological analysis of existential resilience and well-being I offer in this paper indicates that resilient ways of being which enable well-being can be learned; the analysis thus brings to light deep motivations for supporting resilient learning through healthcare practices and policies. (shrink)

This article examines the philosophical role of illness. It briefly surveys the philosophical role accorded to illness in the history of philosophy and explains why illness merits such a role. It suggests that illness modifies, and thus sheds light on, normal experience, revealing its ordinary and therefore overlooked structure. Illness also provides an opportunity for reflection by performing a kind of suspension (epoché) of previously held beliefs, including tacit beliefs. The article argues that these (...) characteristics warrant a philosophical role for illness. While the performance of most philosophical procedures is volitional and theoretical, however, illness is uninvited and threatening, throwing the ill person into anxiety and uncertainty. As such it can be viewed as a radical philosophical motivation that can profoundly alter our outlook. The article suggests that illness can change the ways in which we philosophise: it may shape philosophical methods and concerns and change one's sense of salience and conception of philosophy. (shrink)

It is fundamental assumption in nursing theory that it is important for nurses to understand how patients experience states of ill health. This assumption is often related to aims of empathic understanding, but normative principles of social interpretation can have an important action‐guiding role whenever nurses seek to understand patients’ subjective horizons on the basis of active or passive expressions of meaning. The aim of this article is to present a philosophical theory of concept possession and to argue that (...) it can shed light on how nurses should seek to understand patients’ subjective perspectives on the meaning of illness. The two basic ideas in the theory are that patients’ beliefs and thoughts about their experiences involve concepts and that concepts can be communicated on the basis of shared implicit conceptions of what they mean. These conditions of understanding have a striking application: nurse‐patient communication is limited by many contextual factors, but it is often possible for nurses to detect shared implicit conceptions of the meaning of concepts of disease and illness. Furthermore, by acting as sympathetic linguistic experts and creating an atmosphere for dialogue, nurses can make patients feel comfortable about deferring to medical explanations of meaning that can constitute a communicative platform. The last part of the article uses a number of cases studies to show how these implications can be implemented as conceptual tools for securing meaningful communication about illness experiences in patient dialogue. (shrink)

The title Expert-by-Experience has been used frequently in mental health literature and policy making in recent years. The implication is that by virtue of suffering from a mental disorder, the person has access to a unique form of knowledge that would separate them from others, affording them the status of an expert. In this article, the concept is put under philosophical scrutiny. I use Wittgenstein's Private Language Argument and Ryle's work on introspection to show that personal experience could (...) not be a basis for expertise. Personal experience and introspection could not be a basis for knowledge underpinning expertise. (shrink)

Phenomenology of illness has grown increasingly popular in recent times. However, the most prominent phenomenologists of illness defend a psychologizing notion of phenomenology, which argues that illness is primarily constituted by embodied experiences, feelings, and emotions of suffering, alienation etc. The article argues that this gives rise to three issues that need to be addressed. (1) How is the theory of embodiment compatible with the strong distinction between disease and illness? (2) What is the difference between (...) problematic embodiment and illness? (3) How is existential edification, that illness can give rise to according to the phenomenologists, to be understood? The article then engages in an analysis of Heidegger’s and Waldenfels’ phenomenology with the ambition of developing a notion of existence, which can transgress the psychologization of illness. Rather than arguing that illness is constituted by experiences of suffering and alienation, it emphasizes that broaches upon conatively guided activities constitute illness. (shrink)

In this article I aim at developing a phenomenology ofillness through a critical interpretation of the worksof Sigmund Freud and Martin Heidegger. The phenomenonof ``Unheimlichkeit'' – uncanniness and unhomelikeness– is demonstrated not only to play a key role in thetheories of Freud and Heidegger, but also toconstitute the essence of the experience of illness.Two different modes of unhomelikeness – ``The minduncanny'' and ``The world uncanny'' – are in thisconnection explored as constitutive parts of thephenomenon of illness. The (...) consequence I draw fromthis analysis is that the mission of health careprofessionals must be not only to cure diseases, butactually, through devoting attention to thebeing-in-the-world of the patient, also to open uppossible paths back to homelikeness. This mission canonly be carried out if medicine acknowledges the basicimportance of the meaning-realm of the patient's life– his or her life-world characteristics. (shrink)

Psychopathology can render people strange and difficult to understand. Communication can lead to empathic understanding, which in turn can guide compassionate action. But communication depends on a shared conceptual world. How can language convey meanings that are not shared, that mark a divide between human beings or whole communities? A consideration of the poetics of Paul Celan sheds light on the power of language to bridge disparate worlds and on the ethical stance needed when empathy fails. Celan’s poetics of alterity (...) has implications for our efforts to understand individuals’ illness experience as a grounding for the ethics of the clinical encounter. (shrink)

The distinction that De Haan and Korsten foreground in their valuable commentary between, on the one hand, medical files, and, on the other, illness records is very helpful, as it underlines that illness narratives are not bound to a specific truth regime. They operate in, and at times even across, a variety of truth regimes, within which their status and function can radically differ. In that light, De Haan and Korsten have a point when they state that “any (...) patient’s experience” “exceed[s] the domain of the medical proper”. Quoting from my contribution, they go on to... (shrink)

The aim of this paper is to familiarize the reader with the concept of psychological energy, and the role it plays in deepening our understanding of psychosocial adaptation to traumatic life events and, more pointedly, the onset of chronic illness and disability. In order to implement this aim, the following steps were undertaken: First, a brief historical review of the nature of energy, force and action, as traditionally conceived in the field of physics, is provided. Second, an overview of (...) PE is presented, with a shared emphasis on both its historical underpinnings and its present conceptualizations in the fields of social, health and rehabilitation psychology. Particular emphasis is placed upon applications of PE in the domains of adaptation to stress, trauma and CID onset. Third, reviewed are measuring instruments that have been traditionally applied to the assessment of the nature, content and magnitude of PE and its dynamics. Finally, new perspectives are offered on the dimensional structure, processes and dynamics, assumed to undergird PE, its underlying conceptual similarities to physical energy, and its potential and deeper link to the process of psychosocial adaptation in the aftermath of experiencing trauma and CID. (shrink)

Transfers of critically ill neonates are frequent phenomena. Even though parents’ participation is regarded as crucial in neonatal care, a transfer often means that parents and neonates are separated. A systematic review of the parents’ experiences of neonatal transfer is lacking. This paper describes a meta‐study addressing qualitative research about parents’ experiences of neonatal transfer. Through deconstruction and reflections of theories, methods, and empirical data, the aim was to achieve a deeper understanding of theoretical, empirical, contextual, historical, and methodological issues (...) of qualitative studies concerning parents’ experiences of neonatal transfer over the course of this meta‐study (2000–2017). Meta‐theory and meta‐method analyses showed that caring, transition, and family‐centered care were main theoretical frames applied and that interviewing with a small number of participants was the preferred data collection method. The meta‐data‐analysis showed that transfer was a scary, unfamiliar, and threatening experience for the parents; they were losing familiar context, were separated from their neonate, and could feel their parenthood disrupted. We identified ‘wavering and wandering’ as a metaphoric representation of the parents’ experiences. The findings add knowledge about meta‐study as an approach for comprehensive qualitative research and point at the value of meta‐theory and meta‐method analyses. (shrink)

It is my purpose in this thesis to explore the "reality" of illness, using philosophical phenomenology as a guide. In particular, I am concerned to show that the experience of illness, rather than representing a shared "reality" between physician and patient, represents in effect two quite distinct "realities". Philosophical phenomenology focuses on the nature of experience, and particularly upon the manner in which all experience is structured by the activity of consciousness. In so doing phenomenology (...) emphasizes the unique nature of experiencing and particularly the correlation between the perceiver and that which is perceived. Meaning is seen to be a function of the activity of individual consciousness. In the first chapter consideration is given to some basic concepts which are fundamental for phenomenology and a distinction is made between "own world" and "common world." In the second chapter these concepts are shown to provide insights into the nature of the discrepancy between the physician's and the patient's understanding of illness. Consideration is given to the manner in which the separate worlds of the physician and patient are constituted. It is argued that it is through attentional focusing that the sense of illness is made explicit for the individual. An analysis is provided of the manner in which such attentional focusing is determined. In the third chapter consideration is given to the question of how it is possible to construct a shared world of meaning between patient and physician, given the unique nature of experiencing. An eidetic interpretation of illness is proposed and attention is directed towards some ways in which we do, in fact, come to some understanding of the Other. In the final chapter it is suggested that the notion of healing presupposes a shared world between physician and patient. A distinction is made between healing and curing disease. It is noted that the manner in which the "reality" of illness is defined directly influences the way in which the end of the patient/physician relationship is defined. It is argued that the end of the patient/ physician relationship is healing and that healing is a mutual act which is accomplished within the context of a shared world between physician and patient. (shrink)

HLDING A‐G and HEGGDAL K. Nursing Inquiry 2012; 19: 345–356 Patients’ experiences of health transitions in pulmonary rehabilitationPeople who live with chronic obstructive pulmonary disease (COPD) experience major changes in health. Coping with the illness and caring for themselves places extensive demands on them. Thus, pulmonary rehabilitation (PR) is recommended as a means to facilitate healthy transitions in everyday life with COPD. This study explores the experience of patients with COPD in terms of their transitions in health (...) during and after PR. The research was inspired by interpretive phenomenology. Thirty‐three individual qualitative interviews were conducted with eighteen patients recruited from Norwegian PR units. A thematic analysis of the interviews was performed. The interviewees described participation in PR as a time of increasing awareness of opportunities for health and well‐being with strengthened hope. The year following PR was dominated by their ongoing challenge to acknowledge limitations and explore opportunities in everyday life. Continuation of healthy transitions was facilitated by peer and professional support. The study highlights the personal resources that patients with COPD have access to in order to promote their own health. The study also highlights their vulnerability during illness and rehabilitation. The findings critique time‐limited PR and support the current trends towards patient‐centred rehabilitation efforts that incorporate user involvement and self‐management education. (shrink)

As one of the most compelling technologies for imaging the brain, functional MRI (fMRI) produces measurements and persuasive pictures of research subjects making cognitive judgments and even reasoning through difficult moral decisions. Even after centuries of studying the link between brain and behavior, this capability presents a number of novel significant questions. For example, what are the implications of biologizing human experience? How might neuroimaging disrupt the mysteries of human nature, spirituality, and personal identity? Rather than waiting for an (...) ethical agenda to emerge from some unpredictable combination of the concerns of ethicists and researchers, the attention of journalists, or after controversy is sparked by research that cannot be retracted, we queried key figures in bioethics and the humanities, neuroscience, media, industry, and patient advocacy in focus groups and interviews. We identified specific ethical, legal and social issues (ELSI) that highlight researcher obligations and the nonclinical impact of the technology at this new frontier. (shrink)

Environmental influences on the experiences of people with Parkinson’s diseaseThis study elucidates environmental influences on lived illness experiences. For two consecutive years, persons with Parkinson’s disease (PD) participated in 1 week of daily walking in the Swedish mountains. Daily, low‐intensive walking that is free of intense effort or time pressures associated with group interaction characterized the week. Participants were interviewed 3 months after the mountain stay regarding experiences in the mountains, daily living, and how their experience in the (...) mountains influenced their daily living after returning home. A phenomenological method was used for data analysis. Results point to the close connection between mind, body, and environment. The connection becomes highlighted when people are afflicted with sickness, such as PD, which causes impaired control of body language, impaired voluntary mobility, and lowered energy levels. The results also show how a social context in an environment with suitable physical challenges led to a change in individuals’ perceptions of the manageability of their experienced sicknesses. These results provide a deepened understanding of how individuals with PD experience illness, its influences on daily life, and how a suitable environment opens opportunities for managing daily issues. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Experiences of the Live Organ Donor: Lessons Learned Pave the FutureDianne LaPointe RudowIntroductionThe experience of a live organ donor is multi–faceted and is as unique as each person who agrees to take a risk to save another. Factors include: type of organ donated (kidney vs. liver), relationship to the recipient (related—biological or non–biological vs. non–related), decision–making and motivation for donation, support systems available within and outside of the (...) transplant program, and outcomes of the donation for both recipient and donor. The variety of experiences is apparent in the narratives within this special issue. I want to thank the authors of each story for sharing their experiences of the live donation process. As difficult as it must have been to write, it was difficult for someone like me, a transplant professional who is a strong advocate for quality donor care, to hear. But with each success and failure of transplantation, we can learn in the hopes of improving things for the next.Despite the fact that the field of transplantation is over 50 years old and the first kidney donors were live donors, viewing the field of live donation as a subspecialty of transplantation is a new concept (LaPointe Rudow, 2011). Live donation is, in fact, as specialized as lung transplant, liver transplant, transplant infectious disease, and kidney transplant. All of those subspecialties have clinicians and researchers with expertise in the area. Live donation experts exist and teams of live donor professionals staff most transplant programs today. Additionally regulatory bodies, professional societies, and advocacy groups strive to improve the care of the live organ donor (Medicare Conditions of Participation, 2007; Organ Procurement and Transplant Network, 2011; National Kidney Foundation 2011). Many years have been spent perfecting the surgical procedure and refining the proper testing to ensure that donation is safe for the donor. Live donation is, however, more than a surgery; in recent years, transplant professionals acknowledge that the psychosocial impact of donation on donors, whether positive or negative, can be significant but it is not yet completely understood.Much debate has occurred as to the components of the psychosocial evaluation, length and type of follow up, and the role of the independent live donor advocate (Amsterdam Forum, 2005; Ommen et al. 2011; Pruett et. al. 2006; Schroder et. al. 2008; Simpson & Pomfret 2012). The ethical concepts of paternalism and autonomy are in tension as we attempt to justify live donation. Perhaps nowhere else is ethical deliberation more vigorous than in the debate regarding whether informed consent for live donation is attainable, driven largely by the plight of the patient and the consequent vulnerability of the donor in an effort to help the patient. These quandaries are illustrated in the compelling narratives of this special issue. [End Page 45]Narrative ThemesBased on an analysis of the narratives, I will present a series of dominant themes that emerged from the stories; these will be exemplified by illustrative quotations from the live donor’s narratives.Live Donation has Psychological Effects on the DonorThere are many psychological effects of live donation both pre–and post–donation. The narratives describe feelings such as “I felt like a hero,” “feelings of anxiety, anger and ambivalence,” “it’s the best thing I ever did,” “I would do it all over again,” “a sense of loss,” and feelings of “suicidal thoughts.” The dichotomy of feelings expressed demonstrates the uniqueness of the live donor experience. One donor has nothing but good things to report regarding his or her experience while another feels lasting ill emotional affects requiring ongoing counseling even though the recipient has done well.Pre–donation psychological issuesTraditionally, the psychosocial evaluation explores the pre–donation emotional and family stressors to ensure that there are no issues or underlying psychiatric disorders that will make donation high risk for psychological complications. All donors writing the narratives were found to be suitable donors. That being said, there is no standardized approach to the psychological evaluation. Organ Procurement and Transplant Network (OPTN)/United Network for Organ Sharing (UNOS) (Organ Procurement and Transplant Network, 2011) have policies and guidelines and the Centers for Medicare Conditions of Participation (COP) (Medicare Conditions of... (shrink)

The COVID‐19 pandemic has placed extraordinary stress on frontline healthcare providers as they encounter significant challenges and risks while caring for patients at the bedside. This study used qualitative research methods to explore nurses and respiratory therapists' experiences providing direct care to COVID‐19 patients during the first surge of the pandemic at a large academic medical center in the Northeastern United States. The purpose of this study was to explore their experiences as related to changes in staffing models and to (...) consider needs for additional support. Twenty semi‐structured interviews were conducted with sixteen nurses and four respiratory therapists via Zoom or by telephone. Interviews were transcribed verbatim, identifiers were removed, and data was coded and analyzed thematically. Five major themes characterize providers' experiences: a fear of the unknown, concerns about infection, perceived professional unpreparedness, isolation and alienation, and inescapable stress and distress. This manuscript analyzes the relationship between these themes and the concept of moral distress and finds that some, but not all, of the challenges that providers faced during this time align with previous definitions of the concept. This points to the possibility of broadening the conceptual parameters of moral distress to account for providers' experiences of treating patients with novel illnesses while encountering institutional and clinical challenges. (shrink)

This study explored how women with a diagnosis of cancer (lymphoma) deal with moral concerns related to their responsibility as parents. Ten women with cancer and who had children living at home were interviewed. The interviews were analysed according to the constant comparative method used in grounded theory. In order to provide a focus for the analysis, the ethics of care and the concept of mothering were used as sensitizing concepts. The core concept ‘experience of dealing with moral responsibility (...) of being a parent with cancer by redefining oneself as a mother’ was identified. The processes involved were: interrupted mothering; facing the life-threatening illness and children’s reactions; striving to be a good mother; attempting to deal with moral responsibility; and coming to terms with being a mother. (shrink)