Embracing ambivalence and hesitation: a Ricoeurian perspective on anticipatory choice processes at the end of life.

Especially older adults are increasingly stimulated to think about, talk about and record their preferences with regard to future (health)care decisions, preferably in a pro-active manner. In this paper, I analyse these anticipatory choice processes. My goal is twofold: Firstly, to provide a deeper understanding of what it actually means to decide in advance about end-of-life treatments or options. Secondly, to make a theoretical contribution to bioethics and ACP-theories by rethinking the concept of end-of-life choices from a phenomenological viewpoint. To achieve this, I start by presenting a case narrative that elucidates how these anticipatory choices are lived. Secondly, I map out a theoretical framework about choice based on the phenomenology of the will of Paul Ricoeur. Finally, guided by this Ricoeurian framework, I investigate the potential meaning of choice in the context of contemporary advance care planning trajectories. The analysis demonstrates that choice and agency always imply notions of passivity and uncontrollability. It also indicates the significant value of hesitation and ambivalence. Moreover, it highlights the importance of the notion of co-responsibility in the context of anticipated end-of-life choices, and the relevant distinction between a (willed) choice and a wish. To improve care and support regarding end-of-life trajectories and to promote meaningful conversations, it is imperative to integrate these underrated elements more substantially in our theories, language and practical approaches. I conclude by suggesting that, in order to do justice to the real-life complexities, we might even need to revise the notion of advance 'directives'.

Autobiographical Memory in Feeding and Eating Disorders: A Systematic Review.

INTRODUCTION: Prominent eating disorders (EDs) theories identify a critical relationship between body and self. One of the ways to study this relationship is through autobiographical memories (AMs). The present review aimed to evaluate the studies that investigated AM in patients with EDs. METHODS: A search of PubMed, ScienceDirect, and Scopus databases was performed to identify relevant articles. Of the 57,113 studies found, 25,016 were not duplicated. After screening, 27 articles were included. RESULTS: The studies had some methodological flaws: none of the articles was a randomized control trial and the sample sizes were small. Nevertheless, important evidence emerged because all studies showed that patients with EDs have impaired AM function. This is because the way patients with EDs remember and define themselves is through an allocentric perspective associated with the gazes of others whose role has an impact on AM, body shape, and self. CONCLUSION: To our knowledge, this is the first systematic review to examine AM in patients with EDs. Future research is needed in EDs to expand knowledge about the relationship between the body and the self.

"I Am Forever Changed": A Phenomenological Study of the Existential Experiences of Parents of Children and Young People With Complex Care Needs.

AIM: To explore the existential lived experiences of parents of children and young people with complex care needs. DESIGN: An explorative qualitative design. METHODS: We conducted 16 in-depth interviews with parents of children and young people with complex care needs across Norway from February to May 2022. Data collection and analysis were guided by the theoretical framework of van Manen's phenomenology of practice approach. RESULTS: Four distinct but interwoven themes reflecting the comprehensive and holistic nature of parents' existential lived experiences emerged: lived body: "I am forever changed"; lived space: Seeking sanctuary; lived time: "Time doesn't seem to exist"; and lived self-other: Parents' changing relationships. CONCLUSIONS: Parents' ongoing efforts to manage fluctuations in their daily lives profoundly affect the existential aspects of their well-being, suggesting that respectful and attentive nurse-parent relationships can nurture existential growth. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: There is a crucial need for a genuine nursing presence characterised by an attitude of open sensitivity and attentive listening to parents' existential experiences. Nurses should embrace the opportunity to engage in respectful and attentive dialogues with parents. Acknowledging that the insights emerging from these conversations can improve integrated and personalised nursing services worldwide. IMPACT: Parents of children and young people with complex care needs often experience suboptimal healthcare. Additionally, access to quality healthcare services, particularly in rural areas, is limited, creating inefficiencies and coordination challenges. This study provides nurses, other health care professionals, researchers, and decision-makers with valuable perspectives on supporting parents' existential needs which may significantly impact their overall well-being and coping abilities, contributing to a more compassionate approach to family care. REPORTING METHOD: Consolidated Criteria for Reporting Qualitative Research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: Parents of children and young people with complex care needs provided valuable feedback on the findings and implications of this work.

It looks like nature - a phenomenological study of the built environment in psychotherapy from psychologists' and psychiatrists' perspective.

INTRODUCTION: The study aims to examine psychologists' and psychiatrists' experiences of built environments, indoors and outdoors, in providing psychotherapy. The research explores how the environment matters in clinical practice from the perspective of psychologists and psychiatrists and seeks to comprehend the significance of the facilities where psychotherapy takes place. METHODS: This study design is explorative and qualitative. Data is generated by eight in-depth interviews with six clinical psychologists and two psychiatrists and was analyzed using an interpretative phenomenological approach. RESULTS: Our findings revealed that the built environment matters in clinical practice as it appears to be closely linked to fostering a more comprehensive approach and facilitating various associations and themes in psychotherapy. Three superordinate themes emerged from the data: Design as therapeutic tool, Nature as a co-therapist, and lastly, Expanding the therapeutic space, highlights the participants' perspective on the transformative potential of the built environment to become therapeutic. CONCLUSION: The findings reveal how built environments can be actively utilized as tools in psychotherapy. Environments are not to be considered merely as neutral and passive spaces for conducting and receiving psychotherapy rather than experienced as places that may regulate and impact both therapists and patients, the relationship between them.

A Unitary Caring Theory Perspective of Adolescent and Young Adult Experiences of Resilience.

The major aim of this study was to understand the experience of resilience in adolescents and young adults within the context of a unitary caring science and to generate insights into ways to cultivate resilience in adolescents and young adults who have experienced adversity. Four major essences emerged and were synthesized into one statement. Maintaining hope and optimism for a promising future is acknowledging awareness and acceptance and experiencing connectedness while embracing power in the situation. The essences were interpreted within a theory of unitary caring.

Delineating the Hurtful, Engaging, Emotive, and Directive (HEED) Dimensions of Pain. Characterization for Clinical Relevance.

Pain is an objective, natural reality among sentient creatures that possess cognition and mobility sufficient for apprehending and acting upon its full significance. Defining pain mostly in mental terms makes sense for self-conscious psychology and vocabulary. Pain as a natural capacity among animals did not evolve merely to be aligned with human semantics and intuitions. Much about pain operates beneath the level of accessible and explicit consciousness, and pain as a sensory feeling probably arose before mammalian cognition. Pain should not be viewed as just a simple sensation of utter subjectivity. It displays qualitative variance, degrees of intensity, fluctuating durations, and deflects and/or captures attention. These features of pain situate it prominently within awareness amidst the myriad physical feelings and emotions that influence behavior. The significance of pain cannot omit felt painfulness, and pain wouldn't be painful without its urgent significance for redirecting bodily activity. Most pain shares characteristics of being hurtful, engaging, emotive, and directive (i.e.,- HEED). So delineated, pain evolved to be HEED-ed. Our proposed operational delimitation at first glance appears to be physiological, but its reliance upon the bio-psychosocial actuality of the painient organism renders it inter-theoretically reducible and expandable. This delineation of pain necessitates its being HEED-ed by the organism in which it occurs; and hence ethically heeded by those who profess to study and treat it.

In dialogue with the body: a phenomenological exploration of the interrelationship between people who use AAC and their AAC devices.

This paper explores the intricate relationship between people who use Augmentative and Alternative Communication (AAC) and their AAC devices. Drawing upon insights from phenomenology, I conducted a modified systematic review to explore the enduring phenomenon of low AAC device adoption and as a means to unravel the moments of embodiment and disembodiment experienced by people who use AAC with their devices. The discussion begins with an introduction to phenomenology as a philosophical inquiry and the guiding principles I employed to explore the phenomenon, namely, parte extra parte and object embodiment. Subsequently, I analyze the hegemony of a device-centric approach within the AAC landscape and delve into the first-person experiences of people who use AAC in living with their devices. Lastly, I discuss the embodiment and disembodiment of people who use AAC with their devices, conceptualize the interrelationship between them, and provide future directions for a more holistic and participatory AAC development and investigation that centers on the lived experiences of people who use AAC.

"Where's my baby?" A feminist phenomenological study of women experiencing preventable separation from their baby at caesarean birth.

PROBLEM: Separating women and babies immediately after birth contributes to poor birth experience and reduced satisfaction. BACKGROUND: A negative birth experience can impact a woman's transition to motherhood and emotional well-being beyond the newborn period. Separating women from their baby at birth is known to reduce birth satisfaction and is more likely to happen at caesarean section births. QUESTION: What is the experience of women who are separated from their baby after caesarean section birth without medical necessity? METHODS: Unstructured, in-depth phenomenological interviews were conducted with fifteen women who had been separated from their well-baby at caesarean section birth. Data was analysed using a Modified van Kaam approach. A novel feminist phenomenological framework with two birthing theories was used to explore the experience of the participants. FINDINGS: Four major themes emerged - Disconnection, Emotional Turmoil, Influence, and Insight. These demonstrated significant trauma that both the separation and perinatal care created. DISCUSSION: The participants recognised their vulnerability and the lack of power and control they had over themselves and their baby, which was seemingly not acknowledged. Provider and hospital needs were valued above those of the women. CONCLUSION: Woman-centred care was not evident in the treatment of these women despite the attendance of a midwife at each birth. This research challenges midwives and other health care providers to support and advocate for those birthing by caesarean section to return power and control and support them to remain in close physical contact with their baby immediately after birth.

Lived Experiences of Learning to Use a Long Cane: The Importance of Integrating Perceptual, Existential, and Social Dimensions for Active Cane Use.

How do people who are blind or visually impaired experience learning to use a long cane? This question is of paramount importance for planning and delivering rehabilitation programs and orientation and mobility (O&M) training. Until now, research into learning to use a long cane has focused primarily on technical and professional aspects, paying little attention to the lived experience of the learning activities that are offered in the field of O&M. This extensive qualitative study adopts a lifeworld phenomenological approach and sets out to examine the pedagogical processes within rehabilitation, focusing on the learning experiences of people with impaired vision. The methods used included participant observation during O&M training sessions and recurrent narrative interviews with three research subjects. The results show that learning to use the long cane has perceptual, existential, and social dimensions which are intertwined processes that relate to mind and body, body-world relations, and human existence and society. Learning to use a long cane has in this study been interpreted as embedded with cultural meaning about disability. Further, the habitual use of the cane promotes adaptation to visual impairment but also to build new body-world relations. The lifeworld theory and its methodology have contributed to theoretical evidence and rigor throughout. The results bring new interpretations to the field of O&M and are a relevant basis and valuable for pedagogical rehabilitation as it highlights the importance of taking the individual's lifeworld and needs into consideration when teaching someone how to use a long cane.

A Critical Review of Phenomenological Research Related to Schizophrenia in China.

INTRODUCTION: Phenomenological qualitative research delves into the essence and meaning of phenomena through subjects' lived experiences. Despite its widespread use in humanities disciplines, its integration with psychopathology is rare in China. METHODS: We systematically reviewed phenomenological studies on schizophrenia in China to assess their content and quality and offer insights for future research. Following PRISMA guidelines, we reviewed 28 articles. Quality assessment focused on adherence to theoretical principles, transparency, coherence, and evidence. RESULTS: Topics covered various illness-related experiences, including treatment seeking, medication, hospitalization, rehabilitation, relapse, sexuality, and reproduction. Some studies also explored caregiver experiences. However, only 5 articles were rated excellent, with most lacking theoretical depth. CONCLUSION: Phenomenological research related to schizophrenia in China is mostly peripheral to the psychopathology of schizophrenia, and the qualification rate is low. Researchers should keep in mind the nature of phenomenological attitudes, delving into the essence and meaning of phenomena.

'I Was too Tired to Show Compassion': A Phenomenological Qualitative Study on the Lived Compassion Fatigue Experiences of Nurses Working in Acute Inpatient Psychiatric Units.

INTRODUCTION: Psychiatric nurses are at risk of experiencing compassion fatigue. Despite the economic, emotional and physical effects of compassion fatigue, it has not been sufficiently investigated in the field of psychiatric nursing, and the lived experiences of compassion fatigue, in particular, require further investigation using qualitative methods. AIM: The aim of this study was to examine the lived compassion fatigue experiences of nurses working in psychiatric clinics using a phenomenological approach. METHOD: The study was conducted between December 2023 and February 2024 with 22 psychiatric nurses working in acute psychiatric clinics. Data were collected through individual, in-depth interviews, and analysed using Collaizi's seven-step descriptive analysis approach. RESULTS: Data analysis revealed four main themes and eight subthemes: (1) being a psychiatric nurse (multifaceted role and benefits), (2) tiredness (from traumatic effects to depersonalisation and emotional isolation), (3) causes of compassion fatigue (patient derived, system and working environment derived) and (4) coping methods (individual and expectations). DISCUSSION: Due to difficult patient profiles and adverse working conditions, psychiatric nurses experience compassion fatigue and may become desensitised to patient needs over time. IMPLICATIONS FOR PRACTICE: Institutional support in the form of training for nurses on recognising and coping with compassion fatigue, as well as a safe and workload-balanced working environment, is essential.

Contextual barriers in effective interpersonal communication with patients: A qualitative analysis.

Purpose: Competence building in interpersonal communication (IPC) between undergraduate students and patients requires deep understanding of the factors influencing their interaction. These factors, contextual to our clinical setup were explored from multisource perspectives to understand the perceived barriers in IPC. Method: Qualitative hermeneutic phenomenological analysis was done for patient's semi-structured interviews (n = 16); interns (n = 15) and faculty (n = 14) unstructured focus group discussions. Three independent authors transcribed the data, derived codes and themes individually, and then collated and reflected on them to draw conclusions. Different collection methods, multisource perspectives, and multilevel analysis provided for triangulation and validation of the study results. Results: This study's multisource feedback identified seven inter-dependent barriers to interpersonal communication between students and patients. They were time constraints, lack of trust and respect, cultural diversity, loco-regional linguistic differences, lack of empathy, illiteracy, and financial constraints. Conclusions: The study concluded by identifying the unique set of barriers preventing interpersonal communication in our clinical microsystem. Addressing these contextual factors by preparing training modules and workshops would prepare undergraduate students for patient-centered care and partnership.

Intensive care unit patients' experiences of receiving music therapy sessions during invasive procedures: A qualitative phenomenological study.

BACKGROUND: Excessive noise in intensive care units poses a significant challenge, impacting both patients and staff by elevating stress, disrupting recovery, and impeding effective communication among healthcare professionals. Despite the World Health Organization recommending noise levels below 35 dB, alarms in these units often surpass these limits, contributing to consistently high noise levels. OBJECTIVES: The aim of this study is to explore intensive care unit patients' experiences with music therapy sessions during invasive procedures. METHODS: This study was conducted using a qualitative hermeneutic phenomenological methodology grounded in Heideggerian philosophy. Interventions were conducted with a music therapist, and 14 in-depth interviews were collected. Reflexive inductive thematic analysis was performed. RESULTS/FINDINGS: From the thematic analysis extracted from the 14 personal interviews, three themes were described that represent the bulk of the experiences and emotions of the study participants following the completion of the music therapy sessions. The most noteworthy results are described in the following, organised according to each theme: (i) music therapy against noise, sounds, and light; (ii) music therapy in the face of invasive tests and techniques; and (iii) music therapy as a strategy and tool. CONCLUSIONS: Music therapy has significant potential to enhance the quality of life for patients in the intensive care unit. Music therapy can promote relaxation, reduce stress and anxiety, alleviate pain and discomfort, and improve emotional and physical wellbeing during patients' stay and invasive procedures.

Understanding Family Caregivers' Needs in Coping with the Behavioral and Psychological Symptoms of People with Dementia: A Hermeneutic-Phenomenological Study.

Background: Alzheimer's disease and related dementias (ADRD) are progressive conditions. Family caregivers of patients, especially those caring for patients with ADRD exhibiting behavioral and psychological symptoms of dementia (BPSD), undergo significant physical and mental changes during long-term care. While most researchers have focused on the specific needs of family caregivers, the comprehensive understanding of these needs is limited. In this study, Alderfer's existence, relatedness, and growth theory was used to develop an interview framework to systematically and comprehensively understand the needs of family caregivers of individuals with ADRD. Objective: The objective of this study was to understand family caregivers' needs in coping with BPSD in individuals with ADRD, aiming to alleviate caregivers' stress and promote their overall well-being. Methods: This study used a hermeneutic-phenomenological interview research design. Data were collected via remote conferences involving interviews with 17 participants selected via maximum variation sampling. The Colaizzi seven-step method was utilized, and the interview contents were analyzed using NVivo 12.0 software. Results: The needs of family caregivers in coping with the BPSD of individuals with ADRD could be summarized into three themes, namely existence needs, relatedness needs, and growth needs, and 10 sub-themes. Conclusions: The study findings provide new insights into the needs of family caregivers in coping with patients exhibiting BPSD. Family caregivers experience significant negative emotions, poor caregiving experiences, heavy caregiving burdens, and a desire for professional assistance and policy support.

Bilateral Todd's paralysis in a patient with left fronto-opercular epilepsy.

Postictal paresis ("Todd's paralysis") is commonly observed as a unilateral, transient motor weakness, lasting minutes to hours, after focal or focal to bilateral tonic-clonic seizures, contralateral to the epileptogenic zone. Bilateral postictal paresis is exceedingly rare and could be misinterpreted, especially if the preceding convulsive phase was not witnessed. An 18-year-old right-handed male patient with refractory focal epilepsy with seizure onset at age 3 years, was admitted for presurgical video-EEG monitoring. His seizures were predominantly nocturnal, consisting of a laryngeal somatosensory aura, occasionally evolving to bilateral tonic or tonic-clonic seizures with occasional asymmetrical limb extension during the tonic phase (right arm extension). Postictally, consciousness recovery was fast, if ever lost. At that stage, we documented severe dysarthria and bilateral symmetrical arm paresis lasting several minutes. The ictal pattern and interictal epileptiform activity were projected on the fronto-central midline. Brain MRI was highly suggestive of a bottom-of-sulcus dysplasia with underlying transmantle sign on the left premotor, fronto-opercular region and an FDG-PET-CT showed a concordant left fronto-operculo-insular hypometabolism. A complete lesionectomy was performed, with the additional guidance of intraoperative electrocorticography, resulting in sustained seizure freedom. Anatomo-pathology confirmed a type 2b focal cortical dysplasia. We speculate that, in our patient, a left fronto-opercular ictal onset with an early spread to both primary motor cortices and relative sparing of consciousness networks allowed the emergence of a clinically detectable postictal bilateral paresis.