Cet article décrit certains aspects uniques dans les soins des patients de sexe masculin souffrant d'une maladie hématologique, tout au long du processus, depuis l'étape du diagnostic en passant par la phase de traitement jusqu'à la rémission et parfois, malheureusement, jusqu'à la phase de fin de vie. Ce périple peut s'étendre de quelques mois à plusieurs années. Cet article présente aussi le travail effectué auprès de patients de sexe masculin qui suivent une thérapie de groupe au sein du service. Il met en lumière les défis auxquels les hommes sont confrontés, en particulier dans la société israélienne, lorsqu'ils doivent faire face à une maladie potentiellement mortelle.
[Adaptation de l'Intro.]
This longitudinal nonheroic narrative study allows familiarity with personal and societal transitions in the self-identity of individuals with life-threatening cancer. The theoretical anchor is Bion's container-contained theory. Five interviews with a terminally ill hospitalized male in his 30s were conducted along intervals of between 6 and 8 weeks, up to 2 months before his death. Data were analyzed using the selection mechanisms method. Findings provide insights about the hospitalization experience, his grief, and disenfranchised grief. A rigid mode of container-contained relationships with clinicians created disenfranchised grief. Reflection and coherence among self-identities lead to inner strength and emotional growth despite the body's deterioration. Clinicians have a role in holistic identity transitions of individuals with cancer. Findings illuminate practical recommendations that clinicians may adopt to improve the experience of individuals suffering from cancer at the chronic and terminal phase of illness.
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.
PURPOSE: Siblings of children and young people diagnosed with cancer are commonly reluctant to talk about their experiences due to the circumstances of the illness situation. This article aims to bring voice to experience and inform practice by investigating what and how three young sisters narrate about their illness experiences in personal blogs on the Internet.
METHODS: A narrative methodology for the analysis of life storytelling was applied primarily to investigate the sister's coping strategies and support needs.
RESULTS: The results show how the sisters constructed their own space for narration, with the main aims of expressing their feelings about the illness and seeking social support. The telling of their experiences along with encouraging comments from a supportive audience enabled a change in position from feeling neglected and silenced to being a recognized agent and caring sister. In addition, through their narrative coping the sisters went from powerless to powerful in their position in relation to cancer.
CONCLUSION: The results highlight the need for siblings to be able to narrate experience in a supportive context, where the processing of their relationship with the ill sister/brother should be understood as an important element of their coping with cancer and death.
Most of the literature on reincarnation among the Druze attempts to shed light on its history and on those who believe in it. In this paper, we will argue that the Druze’s belief in reincarnation serves as one of the central components in defining their ethno-religious identity. Our study is based on an analysis of 30 semi-structured interviews with Israeli Druze university students. Findings suggest that the belief in reincarnation plays an important role in the lives of the Druze and it appears to serve as the most outstanding component in the young Druze’ definition of their primordial identity.
This paper takes a novel approach to the active bioethical debate over whether advance medical directives have moral authority in dementia cases. Many have assumed that advance directives would lack moral authority if dementia truly produced a complete discontinuity in personal identity, such that the predementia individual is a separate individual from the postdementia individual. I argue that even if dementia were to undermine personal identity, the continuity of the body and the predementia individual's rights over that body can support the moral authority of advance directives. I propose that the predementia individual retains posthumous rights over her body that she acquired through historical embodiment in that body, and further argue that claims grounded in historical embodiment can sometimes override or exclude moral claims grounded in current embodiment. I close by considering how advance directives grounded in historical embodiment might be employed in practice and what they would and would not justify.
PURPOSE: Migrants experience challenges settling into a new society, while retaining their cultural and religious values. Concurrently facing an end-of-life illness can result in existential distress affecting quality of dying. This study aimed to explore the lived experience of migrants dying away from their country of birth or origin.
METHODS: The study design used a phenomenological approach using Heidegger's philosophy to gather and interpret dying migrants' stories. Participants were a purposive sample of New Zealand immigrants experiencing end-of-life illness and under hospice care. Participants were interviewed at home. Coherent stories were drawn from the transcribed interviews and analysed using iterative methods. Interpretive notions were formed through contemplation and writing.
RESULTS: The ten participants, seven males and three females, were of different ethnicities and countries of origin. Three notions emerged. The first was dual possession of a new hybrid identity developed in their adoptive country, and an inner ethnic and cultural identity, in varying degrees of harmony with each other. The second was being in life review-reliving homeland memories and letting go of dreams. The third notion showed how they sought resolution by enacting continuity through their children, hoping for a final homeland visit, or conveying their dying wishes.
CONCLUSIONS: How life review was enacted for each migrant and resolution depended on finding some degree of belonging in their country of adoption. Implications for end-of-life care include education to increase practitioner awareness and use of formal and informal life review. Enhancing spiritual well-being can assist resolution of end-of-life adjustment.
Some authors have questioned the moral authority of advance directives (ADs) in cases in which it is not clear if the author of the AD is identical to the person to whom it later applies. This article focuses on the question of whether the latest results of neuroimaging studies have moral significance with regard to the moral authority of ADs in patients with disorders of consciousness (DOCs). Some neuroimaging findings could provide novel insights into the question of whether patients with DOCs exhibit sufficient psychological continuity to be ascribed diachronic personal identity. If those studies were to indicate that psychological continuity is present, they could justify the moral authority of ADs in patients with DOCs. This holds at least if respect for self-determination is considered as the foundation for the moral authority of ADs. The non-identity thesis in DOCs could no longer be applied, in line with clinical and social practice.
PURPOSE: Cancer threatens the social well-being of patients and their informal caregivers. Social life is even more profoundly affected in advanced diseases, but research on social consequences of advanced cancer is scarce. This study aims to explore social consequences of advanced cancer as experienced by patients and their informal caregivers.
METHODS: Seven focus groups and seven in-depth semi-structured interviews with patients (n = 18) suffering from advanced cancer and their informal caregivers (n = 15) were conducted. Audiotapes were transcribed verbatim and open coded using a thematic analysis approach.
RESULTS: Social consequences were categorized in three themes: "social engagement," "social identity," and "social network." Regarding social engagement, patients and informal caregivers said that they strive for normality by continuing their life as prior to the diagnosis, but experienced barriers in doing so. Regarding social identity, patients and informal caregivers reported feelings of social isolation. The social network became more transparent, and the value of social relations had increased since the diagnosis. Many experienced positive and negative shifts in the quantity and quality of their social relations.
CONCLUSIONS: Social consequences of advanced cancer are substantial. There appears to be a great risk of social isolation in which responses from social relations play an important role. Empowering patients and informal caregivers to discuss their experienced social consequences is beneficial. Creating awareness among healthcare professionals is essential as they provide social support and anticipate on social problems. Finally, educating social relations regarding the impact of advanced cancer and effective support methods may empower social support systems and reduce feelings of isolation.
This article examines the function of music during contemporary funerals in the Netherlands. Using a performance-based approach, this article shows that music adds to the ritual dimension of contemporary funerals, by relating the music to the funeral itself, the deceased person's identity, and to emotions. Zooming in on the music that in contemporary personalized funerals is selected because it is-one way or another-related to the deceased, it will be shown that the lyrical content of this music is less important than social and emotional aspects. Theoretically, the concept of the musical eulogy is introduced as a hermeneutic tool to examine music in ritualized contexts.
Following deceased organ donation and transplantation, the narratives of families of donors and organ recipients become connected. This is acknowledged when parties receive anonymous information from donation agencies and transplant centres, when they exchange correspondence or when they meet in person. This article reviews literature describing the experience from the points of view of donor families, recipients, and other stakeholders to explore the dynamic system that evolves around this relationship. Findings highlight a link between identity development and ongoing adjustment and will assist those supporting donor families and recipients to make decisions that fit meaningfully.
Les débats actuels sur le deuil périnatal et la nomination civile des enfants morts-nés ouvrent un nouveau champ de l’éthique qui est abordé ici au travers des discours des familles endeuillées ainsi que par les discours juridiques et médicaux. Le nom porte métonymiquement l’individu, qu’il ait vécu ou non. La nomination des bébés décédés prématurément joue un rôle essentiel dans le processus de deuil des parents concernés : la reconnaissance du statut de parent passe par la reconnaissance de l’existence de l’enfant décédé, et donc par sa nomination et son inscription dans le registre d’état civil. En outre, cette problématique associe la question de la désignation des parents endeuillés pour lesquels il n’existe pas de terme leur permettant de s’auto-désigner, d’où des néologismes tels que mamange ou parange. Cette étude discursive amorce l’ébauche d’une éthique de la nomination, mettant en jeu des notions telles que l’empathie, la mémoire discursive ou le devoir de mémoire. Le nom n’est pas seulement un désignatif, ses enjeux sont aussi éthiques et sociaux.
The impact of interpersonal violence extends beyond the victims and perpetrator(s). The purpose of this research was threefold: (a) to identify whether college students' very early reactions to an on-campus shooting were associated with well-known predictors of distress, (b) to examine whether grief and distress reactions were distinguishable in the early days following a shooting, and (c) to investigate whether a compassionate self-identity was uniquely associated with grief but not distress. Beginning just 3 days after an early morning shooting that killed one student and injured three others, university students ( N = 408) completed an online questionnaire. Grief, but not distress, was associated with a sense of solidarity with other students and a compassionate self-identity. General distress was associated with prior mental health difficulties and exposure to the shooting. Acute stress was positively associated with being female, having prior mental health difficulties, media exposure, perceived similarity to victims, less victim blame, social support, and social strain. Results suggest that grief reactions that arise in the early days following a collective loss may serve as important psychosocial resources in coping with interpersonal violence.
This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13 mothers at two time points. Interpretative phenomenological analysis-guided by meaning-making theories of loss-revealed five master categories: the perceptions of the child's life with cancer and death from the disease, changed self-identity, coping style, developing an ongoing relationship to the deceased child, and the postdeath social environment. Each of these master categories and associated subthemes provided insights into the characteristics of the bereaved mothers' adaptive and complicated grief responses to their loss. Given all the mothers evidenced multiple forms or types of these responses over time, they could not be categorized as adaptive or complicated grievers. However, the varying proportions of each of these responses highlighted differences in overall bereavement adaptation.
PURPOSE: The present study assesses the relationship between patient dignity in advanced cancer and the following variables: psychological distress, preparatory grief, and sociodemographic and clinical characteristics.
METHODS: The sample consisted of 120 patients with advanced cancer. The self-administered questionnaires were as follows: the Preparatory Grief in Advanced Cancer Patients (PGAC), the Patient Dignity Inventory-Greek (PDI-Gr), the Greek Schedule for Attitudes toward Hastened Death (G-SAHD), and the Greek version of the Hospital Anxiety and Depression Scale (G-HADS).
RESULTS: Moderate to strong statistically significant correlations were found between the 4 subscales of PDI-Gr (psychological distress, body image and role identity, self-esteem, and social support) with G-HADS, G-SAHD, and PGAC ( P < .005), while physical distress and dependency was moderately correlated with depression. Multifactorial analyses showed that preparatory grief, depression, and age influenced psychological distress, while preparatory grief, depression, and performance status influenced body image and role identity.
CONCLUSIONS: Preparatory grief, psychological distress, and physical symptoms had significant associations with perceptions of dignity among patients with advanced cancer. Clinicians should assess and attend to dignity-distressing factors in the care of patients with advanced cancer.
The purpose of this study was to explore how the identity of people with advanced cancer is influenced by their experiences of living at home. A total of 28 in-depth interviews were conducted with 22 people with advanced cancer and four spouses. Grounded theory guided the collection and analysis of data. Home tours and associated field notes augmented the interview data. The analysis revealed that support of participants' identity was reflected in their abilities to live and occupy the home during daily activities, and in the ways the home and objects functioned as referents to themselves and their past. Threats to their identity ensued as the home environment became unmanageable during daily activities and as homecare professionals and assistive devices entered the home. By supporting people with advanced cancer in maintaining daily activities in the home and reducing changes in the home caused by homecare it is possible to reduce loss of identity.
Plusieurs regards sont nécessaires pour cerner un phénomène aussi complexe que la culture de la mort chez les jeunes djihadistes de l’État islamique. Ces derniers arrivent à sublimer la peur de mourir. Ils acceptent les entreprises kamikazes au nom de leurs idéaux. Dans ce texte, nous proposons un portrait de ces jeunes que nous comparons à d’autres groupes de jeunes occidentaux. Dans les faits, les jeunes djihadistes se distinguent par des rapports contrastés à l’autorité, à leurs identités sociales, à leur corps et à la mort. Avant de présenter notre analyse, nous dressons un bref portrait du groupe armé État islamique et de ses idéaux.
Le musicien de variétés, devenu musicothérapeute, interroge le rôle actif que peut jouer la musique dans les soins apportés aux malades souffrant de la maladie d'Alzheimer ou de pathologies similaires. Alors que la mémoire peut faire défaut, la musique, liée aux souvenirs intimes, permet parfois de reprendre conscience et d'exprimer des émotions enfouies.
Background: The loss of a spouse is a major life event. Previous research found that centrality of the loss to one's identity using Centrality of Event Scale (CES) is related to complicated bereavement reactions, such as depression, posttraumatic stress symptoms (PTS), and prolonged grief symptoms (PGS). This study aims to examine loss-centrality in elderly bereaved people up to 4 years post loss, to determine the relation of loss-centrality to complicated bereavement reactions, such as PGS, depression, and PTS, and to identify early predictors of loss-centrality.
Method: Self-reported data were collected from 208 elderly bereaved people (mean age 72 years, 63.9% women), who completed measures of psychological distress (PTS, depression, PGS) as well as intra- and interpersonal factors (coping-style, crisis support, satisfaction with life, and NEO-PI-R) at 2, 6, and 48 months post spousal loss. CES was measured 48 months post spousal loss.
Results: In line with previous findings (Boelen, 2012a), loss-centrality 4 years following the loss was significantly related to depression, PTS, and PGS. Additionally, early PGS and gender predicted later loss-centrality.
Limitations: Self-repport data was used rather than clinical interviews. CES was only measured 48 months post loss. PGS was first measured 6 months post.
Conclusions: The results support the link between loss-centrality and post loss psychopathology in a population particularly vulnerable to complicated bereavement reactions. The close link between prolonged grief and CES may be relevant in developing treatments for PGS, especially considering the potential relationship between high CES, high PGS, and possibly lack of acceptance of the loss.