BACKGROUND: People can live for many months without knowing why their body is failing prematurely before being diagnosed with motor neurone disease (MND); a terminal neurodegenerative disease which can be experienced as 'devastating' for the person and their family.
AIM: This study aimed to explore the meaning of supporting a loved one with MND to die.
METHODS: This study uses reflection and autobiographical story to connect with broader cultural, political and social meaning and understandings of dying.
FINDINGS: Four themes were identified relating to the end-of-life trajectory of MND. Loss of person (lived body experienced in silence); loss of relationships (lived relations are challenged); loss of home and loss of time (lived space and lived time take on new meaning); loss of future (dying-facing it alone).
CONCLUSION: Dying with MND is a complex phenomenon. When a person can no longer move and communicate, relationships between those involved in end-of-life care are challenging. A person with MND needs the support from those acting as power of attorney to make their end of life their own, and they themselves need support to find meaning in their suffering. This autoethnographic reflection provides vicarious experiences for nurses and other healthcare professionals working with people with MND and similar conditions.
Hope is an important factor in coping and adjusting to life-threatening disease. In this study, we examined the meaning of hope among people with amyotrophic lateral sclerosis (ALS). Semi-structured interviews with 12 people revealed that hope had two contradictory meanings. For some, hope was considered an obstacle to achieving control and to actively cope with the disease. Alternatively, other people with ALS regarded hope as a crucial resource, which empowered their coping and control. These findings are discussed in the context of research and theoretical literature about hope and coping processes.
Several reports have indicated that grief and mental health outcomes of people bereaved by suicide vary by their relationship to the deceased. Parents who have lost offspring experience higher levels of distress than those with other relationships to the deceased. However, there are limited studies investigating the experience of parental bereavement by suicide, and further research is needed. The present study aimed to clarify the differences in grief reactions between bereaved parents and those with other relationships to the deceased in Japan and explore a statistical model of adaptation to the loss. In total, 105 bereaved participants completed a questionnaire covering grief reaction, meaning reconstruction, mental health, social context, and demographic variables. Parents scored higher on several grief reaction items and lower in sense-making than those with other relationships. In addition, path analysis showed that sense-making acted as a moderator in the experience of loss of offspring and grief reaction.
CONTEXT: Experience-based learning may contribute to confidence, competence and professional identity; early experiences may be particularly formative. This study explored how pre-clinical students make sense of their participation in the provision of end-of-life care within community settings.
METHODS: We performed dialogic narrative analysis on essays written by junior medical students in New Zealand. Students had reflected on their participation as assistant caregivers in nursing homes, contributing to the personal care of the elderly residents who lived there. Essays had been submitted to a reflective writing competition that was run separately from the students' medical studies. We analysed five essays about nursing placements, focusing on students' stories about their engagement with residents who were suffering or were receiving end-of-life care.
RESULTS: In their essays, students wrote about powerful and at times intense learning experiences during these early clinical attachments; their attitudes to death and dying were both highlighted and changed. Allied health professionals (e.g. caregivers) provided important support for student learning, especially in relation to seminal encounters such as those occurring in the course of providing end-of-life care. Support increased students' participation and confidence. Reflective writing helped students make sense of their learning and led them to think about their own professional identities, even in the absence of observing or working with doctors in those settings.
CONCLUSIONS: Students' reflections revealed that they tend to filter their learning experiences through the lens of future doctoring, especially when involved in challenging clinical situations. Although medical schools have limited influence on interprofessional relationships or mentoring within the environment of community hospitals, support from other staff can help junior students make the most of their engagement in end-of-life care. In-depth reflection may facilitate the links between experience-based learning and students' emerging ideas about their own professional identities, but the underlying mechanisms need further exploration.
Though the adjustment of bereaved children is increasingly investigated through quantitative studies, their intimate representations regarding the loss of their parent remain unknown. This qualitative study aims at exploring how they give meaning to this experience. Nondirective interviews with bereaved children were conducted and submitted to an interpretative phenomenological analysis. Fourteen children (8 boys, 6 girls, mean age = 8.5 years) were recruited. Seven major themes depicting their grief experience were identified. The importance of the surviving parent is critically highlighted. Findings suggest that the remaining parent could become a fundamental actor in providing grief support for the bereaved children.
Nous ne pourrons vivre littéralement notre mort que lorsque, existant toujours, nous mourrons, c’est-à-dire, en l’instant même de notre mort. Nul ne peut mourir à ma place. Je peux donner ma vie pour quelqu’un, mais je ne peux pas mourir à sa place au sens strict. Notre propre mort nous appartient, en ce sens, et nous avons le droit de ne pas en être privé. Et surtout, elle concerne notre vie entière, jamais un instant isolé, abstrait, qui n’existe pas. Le mourant est un vivant. Au moment ultime, il se découvre tout entier en l’acte de mourir. Mourir est un acte. Il faut pouvoir agir sa mort, la faire sienne, la vivre dans le respect de son for intérieur. Qu’en est-il du sens de « mourir », dans l’expression « mourir dans la dignité » ? On l’entrevoit d’emblée, le vrai sens, le sens concret, d’un point de vue philosophique, est celui de mourir humainement. Il s’agit de pouvoir faire sienne sa mort, la vivre dans le respect de sa dignité proprement humaine de femme ou d’homme libre.
L’article est une approche anthropologique de la mort à l’hôpital. L’analyse s’appuie sur la littérature produite sur ce sujet, sur les enquêtes menées par les deux auteures, en France et ailleurs (Madagascar et Maroc) et sur la consultation de médecine transculturelle qu’elles animent au CHU de Bordeaux. La mort et son sens y sont examinés à travers l’histoire en Occident et par des exemples de médicalisation dans d’autres contextes. Les rituels funéraires s’avèrent indispensables dans certaines cultures pour le devenir du mort et la paix des vivants. En Occident, les rituels se sont amenuisés, et la médicalisation, l’individualisme, la marginalisation des croyances religieuses, font que le sens de la mort s’est modifié. La culture de fin de vie qui est mise en œuvre dans les hôpitaux est pensée pour que la personne puisse donner un sens à sa vie et non pour la préparer à un au-delà. Des exemples sont pris dans différents services du CHU de Bordeaux. Les équipes inventent collectivement des gestes, des accompagnements par les paroles, pour que la fin de vie soit la plus apaisée. En effet, le risque le plus grave à l’hôpital est de mourir seul, condition infâme et violente que redoutent tous, patients, familles et soignants.
OBJECTIVES: The purpose of this study was to provide a comprehensive exploration of nurses' meaningful experiences of providing end-of-life care to patients and families in the intensive care unit (ICU). The objectives of this research were: (1) To explore what is meaningful practice for nurses regarding end-of-life care; (2) To describe how nurses create a good death in the intensive care unit and (3) To identify the challenges that nurses face that affect their meaningful experiences and ultimately the creation of a good death.
RESEARCH DESIGN: This study utilised an interpretive phenomenological approach using Van Manen's (1997) method.
SETTING: In-depth, face-to-face interviews were conducted with six intensive care nurses employed in a 32-bed medical/surgical intensive care unit of an academic tertiary care centre in Canada.
FINDINGS: The overarching theme from the analysis of this experience was "being able to make a difference" which was intricately woven around contributing to a good death. Three main themes were identified and included: creating a good death, navigating the challenges and making it work.
CONCLUSION: The findings reveal how intensive care nurses provide good end-of-life care and create good deaths for patients and families.
The goal of the presented research was to investigate if wisdom plays a mediating role in the relationships between meaning in life and the attitude toward death in the period of middle and late adulthood. A study was carried out that included 567 persons aged 40 to 75 years. Three measures were used: Personal Meaning Profile, Three-Dimensional Wisdom Scale, and Death Attitude Profile-Revised. The conducted analyses allowed the authors to confirm the mediating role of wisdom in the relationships between meaning in life and fear of death as well as death avoidance in persons during the period of middle and late adulthood.
The patient who enters at the intensive care unit (ICU) usually does because of health conditions that are sometimes irreversible and lead to death, and the care at the end of life becomes the main factor of this situation; therefore, the aim of this article was to understand the meaning of the experience of giving care to families at the end of life in an ICU. For this reason, a qualitative, hermeneutic phenomenological research was carried out. For the data collection, a semi-structured interview was conducted to 18 participants, and the results were returned to each of the participants in order to validate each of the categories and interpretations. Among these results, two main categories were identified: emotional response of the nurse to the family and nursing care to the family of patients at the end of life. It was concluded that the nurses working at the ICU are facing aspects related to the end of life that generates emotional and psychological burden; additionally, they do not have specific training in this subject, especially in relation to the care of the families in this situation, for which they provide this care based on empiricism.
Context: Spirituality is the essence of a human being. Patients who have good spiritual well-being (SWB) will also have better quality of life. However, health-care providers usually under-assess this aspect due to lack of practical guideline. In Thailand, the validated survey came from a different cultural background and was heavily based on Buddhism approach.
Aims: The aim of the study is to assess the meaning of spirituality and SWB in Thai breast cancer patients in Southern Thailand where people have more diverse cultural and religious background.
Settings and Design: Descriptive qualitative phenomenology design.
Subjects and Methods: In-depth interview with stratified purposive sampling method. The interviews took place in the oncology outpatient unit department and participants' home. Inclusion criteria were being diagnosed with breast cancer, age over 18 years old, able to communicate in Thai, has a Palliative Performance Scale more than 50, and was not diagnosed with any psychological disorder.
Statistical Analysis Used: Descriptive statistic.
Results: From October 2016 to February 2018, 16 women joined the study. Three themes emerged with five subthemes: (1) feeling life worthwhile, (2) sense of belonging in the community, and (3) feeling connected to the nature.
Conclusions: For Thai women, who have breast cancer, their spirituality focuses on family, mainly their children. They also have better SWB if they have good family relationship, social support, or feeling connected with nature or higher being in a religious or nonreligious way. Future survey design needs to be broader in a secular view and on another perspective rather than the religious approach.
Objective: Healthcare professionals who work in palliative care units face stressful life events on a daily basis, most notably death. For this reason, these professionals must be equipped with the necessary protective resources to help them cope with professional and personal burnout. Despite the well-recognized importance of the construct "meaning of work," the role of this construct and its relationship with other variables is not well-understood. Our objective is to develop and evaluate a model that examines the mediating role of the meaning of work in a multidisciplinary group of palliative care professionals. Using this model, we sought to assess the relationships between meaning of work, perceived stress, personal protective factors (optimism, self-esteem, life satisfaction, personal growth, subjective vitality), and sociodemographic variables.
Method: Professionals (n = 189) from a wide range of disciplines (physicians, psychologists, nurses, social workers, nursing assistants, physical therapists, and chaplains) working in palliative care units at hospitals in Madrid and the Balearic Islands were recruited. Sociodemographic variables were collected and recorded. The following questionnaires were administered: Meaning of Work Questionnaire, Perceived Stress Questionnaire, Life Orientation Test-Revised, Satisfaction with Life Scale, Subjective Vitality Scale, Rosenberg Self-Esteem Scale, and the Personal Growth Scale.
Result: The explanatory value of the model was high, explaining 49.5% of the variance of life satisfaction, 43% of subjective vitality, and 36% of personal growth. The main findings of this study were as follow: (1) meaning of work and perceived stress were negatively correlated; (2) optimism and self-esteem mediated the effect of stress on the meaning attached to work among palliative care professionals; (3) the meaning of work mediated the effect of stress on subjective vitality, personal growth, and life satisfaction; and (4) vitality and personal growth directly influenced life satisfaction.
Significance of results: The proposed model showed a high explanatory value for the meaning professionals give to their work and also for perceived stress, personal protective factors, and sociodemographic variables. Our findings could have highly relevant practical implications for designing programs to promote the psychological well-being of healthcare professionals.
This study explored the context effect in the relationship between capital (income, social support, and cultural capital) and changes in global meaning. We interviewed a sample of 352 bereaved Chinese elders from 18 communities in rural China and conducted hierarchical linear modeling for data analysis. The effects of social support and cultural capital in terms of traditional Chinese culture on changes in global meaning differed across communities. Social support earned its credit in buffering function against bereavement, whereas traditional Chinese culture posed a risk of elevating negative global meaning. More social support and positive global meaning are reliable predictors for enhancing the psychological health of bereaved elders.
Parce qu'il expose le bénévole à sa propre fragilité, l'engagement dans le bénévolat d'accompagnement auprès des personnes gravement malades, en fin de vie ou dans des situations de grande dépendance, n'est pas un projet abouti. Il a besoin d'être soutenu et nourri pour se renouveler en permanence. Mails il peut arriver aussi qu'il ne fasse plus sens.
Le bien-être du bénévole dans l'accompagnement comme la persistance de son engagement dépendent d'échanges entre lui et son association. Il est intéressant de mettre en lumière la nature de ces liens et les raisons de son utilité. La réflexion suit une sorte de chronologie qui démarre à la formation initiale, puis aborde les premiers accompagnements, pour explorer enfin les années d'accompagnement.
OBJECTIVE: Our aim was to identify possible patterns of change or durability in sources of meaning for family caregivers of terminally ill patients after the onset of support at home by an outreach palliative nursing team during a three-month survey period.
METHOD: The Sources of Meaning and Meaning in Life Questionnaire (SoMe) was administered to 100 caregivers of terminally ill patients at four measurement timepoints: immediately before the onset of the palliative care (t0), and at 1 week, 1 month, and 3 months after t0. Time-dependent changes were assessed for the completed subsample (n = 24) by means of bivariate linear as well as quadratic regression models. Multivariate regressions with dimensions of meaning in life as dependent variables were performed for the whole sample by means of random-effects models: dependent variables changed over time (four timepoints), whereas regressors remained constant.
RESULTS: No significant differences were found for psychosocial and clinical variables or for sources of meaning between the uncompleted and completed subsamples. Growth curve analyses revealed no statistically significant but tendentiously parabolic changes for any dimensions or for single sources of meaning. In multivariate models, a negative association was found between patient age, psychological burden of family caregivers, and changes in total SoMe score, as well as for the superordinate dimensions.
SIGNIFICANCE OF RESULTS: According to our hypothesis, sources of meaning and meaning in life seem to remain robust in relatives caring for terminally ill family members during the three-month survey period. A parabolic development pattern of single sources of meaning indicates an adjustment process. An important limitation of our study is the small number of participants compared with larger multivariate models because of high dropout rates, primarily due to the death of three-quarters of the participants during the survey period.
The purpose of this descriptive study was to identify whether meaning reconstruction was associated with indicators of bereavement adaptation in 66 spouses and adult child caregivers of person's with Alzheimer's disease. A cross-sectional mixed-methods design was used. Hierarchical regression models were used to examine whether meaning making predicted grief, depression, and positive and states of mind in the sample. Qualitative interviews were conducted to gain further knowledge about ways in which Alzheimer's disease caregivers construct meaning during bereavement. The majority of participants reported experiencing positive aspects of meaning reconstruction. Benefit-finding and identity change contributed to reductions in grief, and benefit-finding contributed to positive states of mind. Being a spouse and female gender contributed to increased grief and depression. Bereaved caregivers who are at risk for high levels of grief should be targeted for grief therapy interventions that foster meaning making.
Un policier revient sur son rapport à la mort dans son métier, et notamment à la mort violente. Il parle également de la mort du policier lui-même que ce soit par suicide ou meurtre. La placidité apparente du policier face à la mort n'est ni de l'indifférence, ni du cynisme mais une manière d'éviter l'angoisse liée à la confrontation à la mort.
The centrality of a loss to a bereaved individual's identity is associated with greater symptomatology, whereas meaning made of a loss is associated with positive outcomes. This article examines meaning made as a moderator of the relationship between event centrality and symptomatology. Our sample consisted of 204 bereaved undergraduate university students. Centrality was assessed using the Centrality of Events Scale, meaning made was assessed using the Integration of Stressful Life Experiences Scale, and symptomatology was assessed using the posttraumatic stress disorder Checklist-Civilian and Inventory of Complicated Grief-Revised. Meaning made had a significant moderating effect on the relationship between centrality and both measures of symptomatology. At lower levels of meaning made, centrality had a strong and positive association with symptomatology; at higher levels of meaning made, this association became weaker. These results suggest that meaning made is the key to understanding how centrality affects bereavement outcomes.
The focus in grief theories has been increasingly shifting toward questions of meaning. In this study, we draw on the meaning-reconstruction model of grief for studying the unique case of hard drug users who have experienced a drug-related death. The social context of hard drug use, as well as the death and grief circumstances, is problematic and stigmatized. Grief narratives of 10 respondents were analyzed according to the principles of grounded theory. We identified four main themes: (1) the inhibition of emotion by drugs leading to fragmented grief reactions, (2) social exclusion and notions of disenfranchized grief, (3) the acceptance of death, and (4) meaningfulness in a “biography of losses.” Connecting these results with the literature on meaning, we find that meaning-making is a multidimensional and layered process, where some layers result in meanings made while others do not. Finally, this study emphasizes the importance of social and emotional aspects of grieving, as well as the ambiguity of the notion of successful meaning-making in relation to grief.