OBJECTIVE: Knowledge about how people make meaning in cancer, palliative, and end-of-life care is particularly lacking in Africa, yet it can provide insights into strategies for improving palliative care (PC). This study explored ways in which cancer patients, their families, and health care professionals (HCPs) construct meaning of their life-limiting illnesses and how this impact on provision and use of PC in a Nigerian hospital.
METHODS: This ethnographic study utilised participant observation, informal conversations during observation, and interviews to gather data from 39 participants, comprising service users and HCPs in a Nigerian hospital. Data were analysed using Spradley's framework for ethnographic data analysis.
RESULTS: Meaning-making in life-limiting illness was predominantly rooted in belief systems. Most patients and their families, including some HCPs, perceived that cancer was caused by the devil, mystical, or supernatural beings. They professed that these agents manifested in the form of either spiritual attacks or that wicked people in society used either poison or acted as witches/wizards to inflict cancer on someone. These beliefs contributed to either nonacceptance of, or late presentation for, PC by most of patients and their families, while some professionals depended on supernatural powers for divine intervention and tacitly supporting religious practices to achieve healing/cure.
CONCLUSIONS: Findings revealed that cultural and religious world views about life-limiting illnesses were used in decision-making process for PC. This, therefore, provided evidence that could improve the clinicians' cultural competence when providing PC to individuals of African descent, especially Nigerians, both in Nigerian societies and in foreign countries.
Rencontrer un lutin est somme toute assez extraordinaire. C’est pourtant l’aventure proposée à des personnes suivies par notre équipe mobile de soins palliatifs, avec qui travaille Uonam, une Neztoile (art-thérapeute). Constatant les effets de cette rencontre rapportés par les patients, mais aussi par les soignants dans les services, nous avons souhaité en comprendre quelques aspects. Un entretien semi-dirigé avec Manou Clair (Neztoile à ses heures de travail) a permis d’en avancer quelques thèmes, aidé par certains anthropologues comme Albert Piette, ayant travaillé sur la question du détail, et de Jankelevitch et Ricoeur, philosophes. L’enjeu pour nous est de voir à quels modes d’être et d’existence un personnage comme la Neztoile, ni complètement humain ni vraiment irréel, appelle la personne malade affrontée à la question du sens et par quels détails cette rencontre passe. La poésie de l’imaginaire porté par ce personnage sorti du bois metaphorise d’une façon unique et décalée le réel brut et sans masque d’une chambre d’hôpital. Des analogies peuvent s’observer entre la Neztoile, présence inhabituelle dans un hôpital où sont pris en charge des adultes, et des personnages comme le trickster ou le chaman. Ces approches anthropologiques nous donnent des pistes pour expliciter l’ambivalence qui entoure la Neztoile : d’une part, le rejet ou la peur ressentis par certains soignants, d’autre part, la magie de la rencontre avec un patient. Au fil de cette étude, le travail du sens se met au jour, tricotant entre l’absurde de la souffrance et la contemplation de la vie.
Background: Little attention has been paid to the ways in which nurses personally experience, understand and assign meaning to providing palliative care.
Aim: A qualitative study of four nurses working with patients in the terminal phase in a hospital in Mexico was conducted to understand their lived professional experiences and relationships with death.
Methods: Four interviews were analysed using the Greimasian actantial-semiotic model. Actants were categorised by narrative role and their actions were analysed. The grammatical features of the narration were also examined.
Findings: Nurses sought a good death for the patient, which they typically achieved, and spiritual peace for themselves, which they often did not. Nurses placed a high value on personal, social and professional recognition for their work. The philosophical themes affecting nursing as a vocation that emerged included life and death, truth and honesty and the role of God and the family. These professional values were often contradictory, and these dilemmas should be addressed in professional training and support.
This paper addresses the stories of volunteers in hospice and palliative care (HPC) from eight European countries. The aims of the paper are to explore the experiences of volunteers in HPC from their insider perspective, to understand why volunteers choose to work in this field and to understand what it means to them to be involved in palliative care in this way. Stories were collected by the European Association for Palliative Care (EAPC) Task Force for Volunteering contacts in each of the eight countries. The majority of stories (n = 32) came from volunteers involved in different settings including adult patient's homes, hospices, hospitals and care homes. Twenty volunteers were female, six were male, and ten did not give their gender. Stories were translated into English, and a qualitative framework analysis was performed. Volunteers were asked two questions: 'What do you do as a volunteer?' 'What does volunteering mean to you?' Three themes were identified from the data: (i) What volunteers do (ii) How volunteers approach their work and (iii) What working in HPC means to volunteers. The analysis revealed that common approaches to addressing and describing HPC volunteering in terms of tasks and roles could be expanded. To volunteers, it is not about tasks, but about a part of their life, the impact upon which can be significant. The results of this paper, therefore, add to the understanding of volunteers, in the sense of giving attention, being with, and of compassion as a community resource to patients and families in difficult situations. Theories about presence and presencing might have value in further underpinning this contribution to palliative care. Understanding the extent and depth of the volunteers' experience will help to prevent the undervaluing of their contribution and increase the impact of their involvement.
BACKGROUND: Family caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes.
AIM: We examined the relationship between caregivers' time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes.
DESIGN/PARTICIPANTS: Cross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore.
RESULTS: Time spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem.
CONCLUSION: Greater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role.
En EHPAD, la prise en compte des attentes et des besoins de la personne dans la démarche du projet personnalisé se réfère directement aux recommandations de l’Anesm sur la bientraitance et s’inscrit dans la loi n° 2002-2 du 2 janvier 2002 rénovant l’action sociale et médico-sociale. L’auteure se questionne sur la nature du sens au travail des soignants lors des prises en soins globales et complètes des personnes accueillies. Une meilleure perception du travail par les salariés génère le besoin pour eux de s’adapter aux organisations induites par le respect des habitudes de vie du résident. La qualité des soins s’améliore pour répondre aux exigences institutionnelles. Cependant, les restrictions budgétaires obligent à repenser les activités de manière efficiente. Une enquête auprès de professionnels en responsabilité d’équipe, effectuée à partir d’entretiens semi directifs a mis en évidence des similitudes ainsi que des différences de pratiques managériales.
The lives of healthy and sick people are structured according to a variety of conceptual matrices. One of these matrixes consists of philosophical, spiritual, and religious convictions, being this especially relevant in the process of the end of life. The objective of the study is to understand the meaning that individuals at the end of life and the relatives of such individuals award spiritual and/or religious beliefs through an examination of caregiver narratives. Multicentric study was developed that used a qualitative design and a phenomenological approach. The study was conducted in the autonomous community of Andalusia, specifically in the provinces of Almeria, Malaga, Seville, Granada, and Huelva. The selection method was purposive sampling. Caregivers who had lost a relative in a period between 2 months and 2 years previously and who were not in a process of pathological grieving were selected for inclusion in the study. The method involved five discussion groups and 41 in-depth interviews, with a total of 87 participants. A change of paradigms is necessary in which, among other elements, the focus of palliative care is centered on the ability to address these spiritual needs, and healthcare professionals are trained to assist in the provision of such care. Another important consideration is the inequality of spiritual supported provided by clergy from various religions. At least in the cultural context of the research, Catholic chaplains were the only institutional figures whose presence was assumed necessary by health organizations. However, the cultural and/or religious diversity in the autonomous community in which the study was conducted is increasingly broad and complex. It appears necessary to incorporate a variety of clergies in health units so that all patients may find support, whether in terms of companionship or celebration.
De par mon enfance et adolescence au Maroc, j'ai été profondément marquée par les fragrances et rituels de beauté. De cette beauté intégrée à la culture qui se vit comme un partage, j'ai pris conscience de l'impact du toucher dans les hammams et de la magie opérée par les savants dosages d'huiles aromatiques ou essentielles. Après une expérience d'animation en gériatrie, j'ai développé de nombreux ateliers autour des cinq sens à travers des ateliers de pâtisserie, des rencontres autour de parfums et des soins esthétiques. J'ai pu constater l'impact des activités sensorielles sur les malades atteints de troubles cognitifs.
The death of a partner may be stressful for unmarried intimate partners as they lack legal status vis-à-vis the partner, and, thus, lack sufficient cultural support. This qualitative study examined the meaning attributed to the loss by 12 Israeli bereaved intimate partners of fallen soldiers. Through applying a constructivist-narrative methodology, we derived three clusters from interviews with the intimate partners: (a) The relationships never ended – “an unfinished business,” (b) The need to conceal the relationships – “a hidden wound,” and (c) The relationship guides their lives – “a compass.” Practical implications were discussed.
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.