Existential Matters Research Articles

Strategic policy options to improve quality and productivity of biomedical research.

Emerging societal expectations from biomedical research and intensifying international scientific competition are becoming existential matters. Based on a review of pertinent evidence, this article analyzes challenges and formulates public policy recommendations for improving productivity and impact of life sciences. Critical risks include widespread quality defects of research, particularly non-reproducible results, and narrow access to scientifically sound information giving advantage to health misinformation. In funding life sciences, the simultaneous shift to nondemocratic societies is an added challenge. Simply spending more on research will not be enough in the global competition. Considering the pacesetter role of the federal government, five national policy recommendations are put forward: (i) funding projects with comprehensive expectations of reproducibility; (ii) public-private partnerships for contemporaneous quality support in laboratories; (iii) making research institutions accountable for quality control; (iv) supporting new quality filtering standards for scientific journals and repositories, and (v) establishing a new network of centers for scientific health communications.

Death attitudes in Chronic Obstructive Pulmonary Disease (COPD) patients: A mixed-methods study

Research shows the significance of death attitudes for the mental health of somatically ill people, but findings that focus on multidimensionality in processing death are scarce. Patients with Chronic Obstructive Pulmonary Disease (COPD) report shortness of breath, pain and anxiety about suffocation and high mental distress. Utilizing a mixed-methods approach from 64 hospitalized COPD patients, we examined how they cope with mortality. We conducted a narrative interview with two questions. Patients completed the Multidimensional Orientation Toward Dying and Death Inventory (MODDI-F). Findings reveal a spectrum of death-related narratives, with most patients reporting at least 3 different attitudes. The sample showed below average scores in the Rejection of One’s Own Death and Dying subscale of the MODDI-F. Assessing death attitudes using two simple questions proved highly applicable in this population and may serve as a potential approach to engage patients in discussions about existential matters, as suggested in the literature.

The elephant in the room: Metaphors in women's accounts of life with a family member with problematic substance use.

Background: Research has shown that a family member's problematic substance use has significant deleterious mental and physical health impacts on other members of the family. Women are more often affected than men. These negative health effects persist as the person with problematic substance use ages, and they vary according to the relationship status. Aim: The aim of this study was to gain a deeper understanding of how women experience and are affected by their family member's substance use problems. Method: A metaphorical analysis of narrative interviews with 11 daughters and five wives of older adults (>65 years) with problematic substance use. Results: We identified four areas of signification in which metaphors were employed: (1) experiences (chaos and crash and walking on eggshells); (2) strategies (complicity and silencing); (3) dilemmas (deceit or a disease and open or closed dilemmas); and (4) consequences (obtaining or retaining an identity, health and different types of help). Conclusion: Family life with a parent or spouse with a substance use problem was described as chaotic, unsafe, uncertain and with no prospects of change. The study illustrates how metaphors are used to mediate experiences and worldviews pertaining to existential matters founded in deep negative emotions, deceit, shame and stigma. Metaphors make up a crucial material for communicating emotions and themes that are difficult to convey due to shame and stigma.

Exploring the Lived Experience of Behavior Change Technologies: Towards an Existential Model of Behavior Change for HCI

The majority of behavior change and persuasive technologies are exclusively addressed to modify a specific behavior. However, the focus on behavior may cloud the “existential aspects” of the process of change. To explore the lived and meaning-laden experience of behavior change, we interviewed 23 individuals who have used behavior change technology in their everyday life. The study findings highlight that behavior change is tied to meanings that point to existential matters, relates to a nexus of life circumstances, and unfolds over long periods of time. By contrast, the technology used by the participants appears mostly to focus on the present target behavior, ignoring its links to the participants’ life “context” and “time,” also providing scarce help for sense-making. Based on these findings, we surface a preliminary “existential model of behavior change,” identify several barriers that may prevent the modification of behavior and propose some design suggestions to overcome them.

BEYOND CAUSAL EXPLANATIONS: the understanding of suicide from the perspective of existential phenomenological psychology

This article is about suicide on the Phenomenological Existential Psychology perspective. The question that guides this study is: how does the Phenomenological Existential Psychology understands and analyses the suicide subject? The general goal of the article is to discuss the matter of the suicide under the heideggerian Phenomenological Existential Psychology’s view. The specific goals are: contextualize the suicide matter; to understand the finitude, death and autonomy categories; and analyse the discussion of moralization, blaming and pathologizing of the suicide. This is a narrative literature review that attempts to describe the development of such theme, through the analysis of scientific production. Starting with a statistical analysis and the different ways of understanding of the suicide, this article attempted to reach a deeper reflection about the existential matters about the phenomenon. Going through reflections about the meaning of finitude, using some ideas, such as anguish, freedom and choice, and also aspects involving matters of cause and motive. Lastly, we attempted to deepen the interpretations of traditional labelers that that remains about the ways of understanding the behavior of putting an end to one’s own life. With an emphasis for the moralizing view, of blaming and pathologizing. We hope that the discussions made can favor a point of view that encompasses the subjectivity and complexity of each existence regarding suicide.

The “Phenomenon” in Mamardashvili’s Phenomenology of Ontological Maturation

Abstract In the essay, I present the basic principles of Merab Mamardashvili’s phenomenology of ontological maturation. Though Mamardashvili’s thinking has been recently introduced to the West, there is still very little awareness of the uniqueness of his phenomenological insights, allowing him to illuminate contemporary philosophy’s central ontological and existential matters in a novel light. The essay addresses Mamardashvili’s interpretation of the “phenomenon,” which he exemplifies on rich experiential material from Proust’s novel In Search of Lost Time. The “phenomenon” is shown to differ radically from its traditional phenomenological interpretation as something that gives/shows itself in/for experience. Instead, the phenomenon is interpreted as an event that shocks one unexpectedly and offers a momentary opportunity to let oneself be appropriated by that truth, constituting the event of being human. I explicate the relations between Mamardashvili’s notion of the phenomenon, human transformation, and ontology. The central theme of these discussions is a new sense of human agency and autonomy revealed as the goal of transformation and requiring that one walks a path of ontological maturation.

Experiences of participating in an eHealth intervention for patients with abdominal aortic aneurysm: A qualitative study

AimsTo explore patients’ experiences of an eHealth tool and tailored psychosocial support throughout the care trajectory of AAA repair. DesignA qualitative interview study. MethodsIndividual in-depth interviews were performed with twelve patients participating in an intervention study in conjunction with AAA surgery. Data were collected from March to December 2019. The interviews were analysed using qualitative content analysis with an inductive approach. ResultsThe patients’ familiarity with and attitude to eHealth influenced their use of the eHealth tool. The interpersonal relationship with health care staff affected patients’ ability to submit themselves. The preoperative information, including the eHealth tool, may result in an overwhelming amount of information, causing anxiety and leading patients to refrain from information, partly due to the timing of the information. Psychosocial support offered continuity and reassurance, and enabled the patients to elaborate on existential matters. ConclusionThe design of eHealth services in AAA care would benefit from a consideration of patients’ attitude to eHealth and familiarity with modern technology. To increase patients’ accessibility to health care services, their preference for technology use and type of contact should be verified and respected. Psychosocial support should be offered with continuity to alleviate patients’ emotional burden. Adjustment to patients’ mental state and learning needs may forestall anxiety. ImpactThis study highlights factors that affect the acceptability of eHealth services in AAA patients. These findings can guide future design and implementation of mobile health interventions in surgical care.

Moving towards holistic rehabilitation - A qualitative study exploring how people diagnosed with cancer and cancer survivors experience a dance-like intervention.

Rehabilitation that supports the individual on the journey back to their usual selves after cancer treatment becomes increasingly important. Studies have shown that a focus on the connection between body and mind might be beneficial. Consequently, Whole Person Care and initiatives that fall in line with this holistic approach to health care, such as a dance-like intervention needs further examination. The aim of this study was to explore the qualitative aspects of 5Rhythms® as experienced by people diagnosed with cancer. A total of 29 (17 in 2017) participants were recruited through purposeful sampling. Participants underwent one 5Rhythms® session per week for 2 months. This qualitative study with a phenomenological approach useddiaries and individual interviews as its methods for data collection. Data were analysed using Giorgi's phenomenological framework and Maurice Merleau-Ponty's theoretical perspectives on phenomenological approaches to the body, perception and consciousness were applied. Three main themes ('(now) I sense my entire body', 'Something liberating is happening inside my body' and 'We travel together') and five connecting sub-themes were identified through the analysis process. Participating in 5Rhythms® contributed to reconnecting body and soul during or after battling cancer. It evoked thoughts and feelings of existential matter. Results suggest that participating in 5Rhythms® can assist in personal growth. The benefit of being among peers while on the path to recovery was also illuminated. In regard to rehabilitation, this study underlines the importance of being aware of the connection between body and mind.

AN APPARENT SPIRITUALITY AND TRANSCENDENTAL ATTITUDE IN WALT WHITMAN

Walt Whitman has projected the apparent picture of spirituality and transcendental attitude in most of his poems; especially in this study some selected poems of the poet have already been revealed mutual connection between animate and inanimate objects as a discovery of the mystic elements of Almighty. The connection represents the decoration of mystic elements where an avid reader can find out some of his poems as an exploration of mystic connections with animate state as well as with inanimate state as for improving democratic emotions throughout the world. The transcendental belief has reemphasized his attitude that inaugurates the ideas of connections among whole cosmology of Almighty. In consequence, the study approaches to invent the intuitions of Almighty who definitely knows one day every fragmented lands and oceans will be connected by the Suez Canal, Pacific Railroad and Atlantic cable. The relation in-between form of science and existential matter has beautifully explored his apparent spirituality and transcendental attitude which is an extremely pedagogical concern of American English literature.

How do people experience the temporality of everyday life changes? Towards the exploration of existential time in HCI

The idea of time as an existential concern has found scarce attention in the Human-Computer Interaction (HCI) community. Still, time in our life is mostly experienced in connection with important existential matters. Life changes are emblematic examples of aspects of our existence that are fundamentally temporal. In this article, I explore how people experience the temporalities of “change”, by asking 16 participants to report on life changes they consider relevant and their temporal aspects. I found that temporal features like velocity, direction, and synchronization deeply impact the process of change, by affecting the participants’ opportunities to make sense of and act upon their own transformations. The study findings point to a conception of existential time that contributes to both HCI research on time and life changing events, by highlighting the relativity of temporal slowness and speediness, the malleability of time, and the fundamental openness of our time experiences.

Swedish family care advisors’ views on existential loneliness and existential support to informal caregivers of older people: A cross-sectional national survey

The number of older people needing care is increasing, and care is often provided by informal caregivers. The mission of family care advisors (FCAs) is to provide them with support; however, whether and how support in existential matters such as existential loneliness is provided is unclear. Therefore, the aim of this study was to describe FCAs’ views on existential loneliness, and existential support provided to relatives who act as informal caregivers to older people. A national survey was distributed to 349 FCAs in Sweden, response rate n = 120 (36%). The STROBE checklist was followed when presenting the study. Existential loneliness was viewed as thoughts about life and meaning (78%). Existential support was provided by dialogues (87%), visits (75%) and support groups (73%); 45% of FCAs stated that they had time to provide existential support and 27% reported having knowledge of how to encounter existential loneliness. FCAs provide existential support, but often lack experience, knowledge and time. Time and knowledge are important prerequisites for acknowledging existential needs.

Patient, Family Caregiver, and Nurse Involvement in End-of-Life Discussions During Palliative Chemotherapy: A Phenomenological Hermeneutic Study.

The aim of this study was to investigate current nursing practice related to end-of-life discussions with incurable lung cancer patients and their family caregivers from the perspectives of patients, family caregivers, and nurses in an oncology outpatient clinic. This phenomenological hermeneutic study included nine patients, eight family caregivers, and 11 nurses. Data were collected using participant observation, informal and semi-structured individual or joint interviews with patients and family caregivers, and focus group interviews with nurses. A Ricoeur-inspired approach was used to analyze the data. Three themes were identified: (a) content of end-of-life discussions, (b) timing of end-of-life discussions, and (c) challenges in end-of-life discussions. End-of-life discussions were seldom initiated; when they were, it was often too late. Discussions addressed treatment, place of care, practical/economic concerns, and existential matters. The physical environment at the outpatient clinic, lack of continuity, and nurses' instrumental task workloads and time pressure posed challenges to initiating end-of-life discussions.

Lived experiences and caring needs in young adults diagnosed with cancer.

To explore the lived experience of young adults diagnosed with cancer and to increase our understanding of how to help them with their caring needs. Being diagnosed with cancer is normally related with an existential crisis. This indicates that the individual cannot avoid thoughts of death, loneliness, guilt, and meaninglessness. In person-centered care, the caretaker should have a holistic view of the person. Professionals must meet the patient´s different needs to strengthen health and well-being for the diagnosed. This approach encourages the traditionally passive patient to become an active consumer who works in partnership with the healthcare provider. For this study, a content analysis of narratives was conducted, targeting age groups of 20-29 to take part of young adults' experiences. Qualitative analysis of narratives and followed checklist (e.g., COREQ). During the analyzing phase, two main themes emerged: Interactions with Professionals and Cancer Voyager. In the results, both positive and negative feelings regarding encounters and support received from the professionals were described, this affected the young adults' well-being and their ability to participate during treatments. The young adults felt as being on a journey with no control over which direction the road may take. Outcome of the result shows the importance of making the young adult, one in a team. When working in a person-centered way, patients gain control by owning their own responsibility during treatments. There is a need in nursing education to address existential matters, to make nursing students ready to be approach but such questions in their professional work. Also, we believe that the experienced nurse must be given means to feel confident to handle questions about existential matters. By developing skills in the area of e-Health, collaboration through support groups, and last but not least switching to patient-centered care, we can offer effective and evidence-based care tailored for this population.

Digitale communicatie over existentiële vragen en spiritualiteit in het kader van persoonsgerichte zorg in het ziekenhuis

This article is about digital communication on existential and spiritual matters within person-centered care in hospitals. The explorative qualitative research aimed to get a deeper insight into the ways health care professionals (including spiritual care providers), can establish and then keep contact with patients when it is harder to have face-to-face conversations. In interviews and focus groups with stakeholders and experts, I have tried to find answers to the following research question: “Are there existing instruments in digital communication available, or is there a need to develop new tools, to use for personal communication on existential and spiritual matters when there is no possibility for face-to-face conversations?” The results of the research are diverse but consistent. Most of the respondents are opting for the use of the existing digital communication tools like Skype, WhatsApp etc. No particular mode was favoured. However, although digital communication is considered to be a good aid, face-to-face contact was nevertheless much more appreciated over digital means of communication. As a spin off there are ideas about possibilities to develop new ways of digital communication on the meaning of life and spirituality. In the article I also reflect on the impact of Covid-19 from a personal experience as a recent immigrant. We are living in extremely turbulent times. Ongoing turbulence might be the new normal. This all leads to a new question for future-proof spiritual care: “Can digital communication successfully replace traditional faceto- face communication in the realms of spiritual care? Or is also retaining more traditional face-to-face communication vitally important?”

Jus Commune and Common Languauge: Insights on the Judicial Construction of Linguistic Law in Quebec Through the Prism of Jus Commune

Abstract The jus commune (droit commun) is the intellectual canvas upon which any rule of law is built upon within a given society, that must be integrated in any interpretation or construction process in any field of law, even constitutional law. As the jus commune bears a series of structural values, one ponders as to the correct construction of linguistic law to be held in that regard within a minority society entrenched inside a greater federal superstructure, where linguistic preservation is a collective existential matter. The author submits that the Supreme Court of Canada may have neglected to consider this important factor in Quebec when striking down large sections of the Charter of the French Language pertaining to the official language of law and judicial decisions in the 1979 Blaikie case, in which it imposed official constitutional bilingualism in matters of legislation and judicial decisions to the enclaved French-speaking province. Perhaps the appropriateness of this decision should be revisited.

Depression, anxiety, delirium and desire to die in palliative care : Recommendations of the S3 guideline on palliative care for patients with incurable cancer

The aim of palliative care is to optimize the quality of life of patients with incurable advanced diseases. Adequate psychotherapeutic and psychiatric care is essential in this context. This article presents the recommendations of the S3 guideline on palliative care for patients with incurable cancer with regard to psychotherapeutic and psychiatric contents. The guideline was developed under the leadership of the German Society for Palliative Medicine (DGP) within the methodological framework of the German Guideline Program in Oncology. Systematic literature reviews were carried out to identify relevant publications in the databases Medline, Cochrane Library, PsycInfo and Embase. Based on the publications included and clinical experience, representatives of 61professional associations developed and agreed on evidence-based and consensus-based recommendations. Out of the total of 15chapters in the guidelines, four have a special reference to psychiatry or psychotherapy; they cover the topics depression, anxiety, delirium in the dying phase and dealing with the desire to die. These chapters contain atotal of 71recommendations, almost one third of which are evidence-based. In view of the regularly undetected psychological symptoms in patients with incurable cancer, an early assessment is recommended. Optimal control of physical symptoms and support in social and existential matters are general measures that should be provided in addition to non-pharmacological and pharmacological procedures. The guideline on palliative care deals with important mental issues that should be considered by all disciplines and professions. The need for research in palliative care remains high.

Pathographies and Epiphanies: Communicating about Illness

AbstractEpiphany is a literary device bringing forth an experience of sudden wisdom or insight and is particularly applied to literature from the romantic era. However, epiphanies are also present within contemporary autobiographical patient stories (pathographies) expressing something that is difficult and perhaps otherwise left unspoken. Kristian Gidlund’s pathographyI kroppen min. Resan mot livets slut och alltings början(2013) deals with the author’s experience of having severe cancer. Gidlund was a non-religious person but at the end of his life, his blogposts included epiphanies or visionary moments regarding his afterlife. In this article the author shows how the use of epiphanies can be a subtle means of expressing thoughts and feelings when facing severe illness. Knowing how to identify and interpret epiphanies in pathographies can improve the abilities of relatives and medical staff to communicate with patients about existential matters and emotional distress. KAKA I would like to thank Rachael Reynolds and Paul Farmer for their most conscientious proofreading, and Dr. Christopher Oscarson for the accurate translation of the quotes from Kristian Gidlund’s book.

‘Dead Forever’: An ethnographic study of young children's interests, funds of knowledge and working theories in free play

Abstract This ethnographic case study explored how children build and use working theories in play (Hill, 2015), specifically theories about existential matters of life, death and dying, human nature, and the social, physical and natural world. The concepts of funds of knowledge and interests are integrated to theorise children's agency and competence in how they collectively build working theories. This conceptualisation reflects contemporary socio-cultural theories in which peer cultures, relationships and interactions are central to play and learning, with interaction conceived as multimodal, encompassing artefacts, embodiment and affect. Data is presented from research conducted with children age 4–6 (Hill, 2015), using videotaped episodes of their ‘Dead Forever’ play, and post-video discussions with children and parents. Findings indicate that children's interests and working theories are sources of knowledge in peer-led learning, as evidenced in the social, cognitive, cultural and affective content of their play. We propose a complex understanding of play and learning within child-led Zones for Proximal Development. The extent to which children's interests and working theories are understood by teachers to connect with curriculum goals is problematized in the context of contemporary ECE frameworks.

What matters in clinical trial decision-making: a systematic review of interviews exploring cancer patients' experiences.

Being diagnosed with cancer is an existential challenge and involves difficult treatment decisions, including treatment in clinical trials. Therapy for advanced cancer is potentially life-prolonging and only rarely cures advanced cancer, which often renders these patients in a special situation where dealing with end of life, hope and meaning, become an important part of life. Many existing reviews include both patients with advanced cancer and patients undergoing adjuvant cancer treatment, and there is a lack of reviews with consistent study designs and methods. To systematically review and thematically synthesise the experiences of patients and relatives when they have to decide whether or not to participate in a clinical oncology trial and to provide knowledge about the decision-making process. A qualitative systematic literature review was conducted based on methods for thematic synthesis by Thomas and Hardens. Eleven full-text articles were included in this study. Six descriptive themes appeared and were grouped under two analytical themes: Individualised decisions and Hope and existential matters, which, through discussion, developed into the synthesis of What matters in treatment-related decisions close to the end of life? This review has shown that existential matters are important in the decision-making and that addressing these might be of great importance in medical decision-making, whether it concerns the existential matters of the patients, of their relatives or of the health care professionals. This review points to existential issues as important contributors in making decisions about treatment. It can be beneficial if health care professionals address the role of existential matters in patients' decision-making in terms of clinical trial participation and involve the relatives more directly to increase individualised decisions. Future research should include the health care professionals' experiences when going in depth with decision-making, with a focus on the existential matters and uncertainties of the health care professionals.

Crowdsourcing identities: On identity as an existential practice mediated by contemporary digital technology

The purpose of this article is to outline crowdsourcing identities as one way to think about humans’ making of identity when practiced in conditions mediated by contemporary digital technologies. It brings together human practices, theory and technology and draws on perspectives of existentialism, social onstructivism, technology and ideas about crowdsourcing. Humans’ making of identity is considered a practice that concerns continuous requests and answers about existential matters of being, becoming and belonging: Who am I? How do I appear to others? Who can I be and become? Where do I belong? In that sense, it is a relational and social practice that is essential to exist as someone — rather than as no one. However, contemporary digital technologies such as social media are not considered essential to this practice. Technologies are thought of as mediating conditions where, for instance, social interactions about existential matters, such as the making of identity, can be practiced in ways that extend on what were possible in predigital times. In multimodal, multidirectional, collaborative and networked ways humans can represent, communicate, gather information and also engage online crowds of others in continuous requests and answers about being, becoming and belonging; Who am I? How do I appear to others? Who can I be and become? And, where do I belong? To illustrate this, two brief narratives of Mary and Steve introduce the article. The making of identity, the duality of Self and Other, the gaze as a panopticon of others, identity and technology and ideas about crowdsourcing are presented and outlined, converging into the interpretive lens of crowdsourcing identities — one way to think about the making of identity when practiced in conditions mediated by contemporary digital technology.