The loss of a loved one causes the world and the place of the bereaved survivor in it to change irreversibly. A key aspect of the grieving process is the integration of the loss in the bereaved survivor’s life story, identity change, and a new future orientation through meaning attribution. Meaning attribution can have favourable or unfavourable effects on the grieving process and hence determines the extent to which a loss disrupts the bereaved survivor’s functioning. A framework of meaning attribution after loss is presented, comprising 17 determinants that fall into five categories: event-related, cultural, social, individual and relational determinants. Each determinant may lead to both positive and negative meanings, thereby facilitating or complicating the grieving process. The framework of meaning attribution highlights the importance of an integrated network for mental health care, spiritual care, and end-of-life care in the prevention and treatment of traumatic grief. It also emphasizes the support from relatives, collective rituals, cultural views, legal settlements, and other societal factors that may foster or impede adaptation to loss. The framework of meaning attribution informs research across a range of research themes, including specialist care for traumatic grief, a culturally sensitive care network for traumatic grief, and improving care for ambiguous loss in a global context.
OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning-making pre-bereavement among children with advanced cancer and their parents.
METHODS: As part of a larger study examining shared decision-making near the end-of-life, 24 children with advanced cancer and/or high-risk cancer, 26 mothers, and 11 fathers participated in individual, semi-structured interviews. Analyses focused on questions regarding meaning-making. Four coders analyzed the data via directed content analysis.
RESULTS: Three major meaning-making themes emerged: (1) sense-making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit-finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning.
CONCLUSIONS: Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high-risk illness. Clinicians might consider if meaning-centered interventions designed for use in adults at end-of-life and bereaved parents may be helpful for children with advanced or high-risk cancer and their parents.
Critical considerations of space and place at the end of life have been limited in the social science literature. To address this gap, we draw on empirical data from two interrelated but separate qualitative Australian data sets to critically examine dying in relation to considerations of space, place and affect. These studies share the primary aim to better understand and articulate end-of-life experiences, with one using video reflexive ethnography and the other semi-structured interviews with patients. Challenging the broader valorisation of particular places of dying and death (e.g. home, hospice, hospital), we critically explore the meanings and affects of space and place and how they are rooted in normative expectations. Drawing on participant accounts we interrogate simplistic concepts of home versus hospice, or hospital versus community, developing a critical social science of the intersections of space and place at the end of life.
AIMS: This study explored perceptions on a good-life, good-death, and advance care planning in Koreans with non-cancerous chronic diseases with the goal to develop a culture-specific advance care planning intervention in this population.
DESIGN: A qualitative descriptive design was used.
METHODS: Data collections were conducted between September 2017 - June 2018. Twenty-nine patients aged 41-82 years (85.8% men) participated in the interviews lasting 40-60 min. The verbatim transcriptions of the semi-structured interview data were analysed using conventional content analysis.
RESULTS: Good-life was described as 'present with physical and financial independence,' 'not burdensome to the family,' 'completed life responsibility', and 'helping others.' Some participants described good-death as 'prepared death' while others considered it as 'sudden death during sleep.' All participants wanted to have a painless death and not burden the family. Advance care planning was a new concept to many participants. It was likened to 'insurance.' Some participants believed that decision-making on life-sustaining treatment should be done by their family, not themselves, because of economic or emotional distress. Some participants wanted to discuss medical and non-medical care services to reduce the burden on self and family.
CONCLUSION: Family is key when it comes to the meaning of good-life and good-death. Cultural adaptation is necessary to meet the advance care planning needs of Koreans with non-cancerous chronic diseases.
IMPACT: Successfully implementing advance care planning in Koreans with non-cancerous chronic diseases depends on how it is adapted to the disease-specific characteristics compared with cancer, and the cultural norms and social context. Nurses need to be prepared to offer advance care planning to persons with non-cancerous chronic diseases based on a keen sense of and empathetic cultural competence.
In nursing homes, discussions between family members and staff regarding the end of life for residents with cognitive impairment are crucial to the choice of treatment and care consistent with residents' wishes. However, family members experience burden in such discussions, and communication with staff remains inadequate. The purpose of this qualitative descriptive study was to elucidate the meaning of continuous end-of-life discussion for family members. Data were collected using semistructured individual interviews. Thirteen family members of residents from 3 nursing homes in Kyoto, Japan, participated in the study. Data were analyzed using thematic analysis, which focused on both explicit and implicit meanings. Four themes emerged regarding the experience of end-of-life discussion: “the end of life soaking in,” “hardship of making the decision to end my family member's life,” “wavering thoughts about decisions made and actions taken,” and “feeling a sense of participation about the care.” Family members had come to accept the deaths of residents through continuous discussion and experienced strong conflict in facing the death of their family members. Moreover, staff members should understand family members' beliefs and the burden they experience in facing residents' death.
OBJECTIVE: Although stakeholders' participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the perspectives of bereaved parents engaged in different types of activities in Neonatal Intensive Care Units and providers who work with them.
DESIGN/METHODS: Mixed methods convergent analysis.
SETTING: Canadian paediatric tertiary care university hospital.
PARTICIPANTS: All bereaved members of the resource parents group (n=8) and most providers who work with them (n=16) answered a satisfaction/needs questionnaires.
RESULTS: Since 2011, eight bereaved parents were involved in a large number of activities mostly related to palliative care (research, education or clinical care initiatives). Three engaged in peer-to-peer support activities while the others preferred activities outside of clinical units and/or without direct interactions with other families. All of them reported that their participation had positive impacts, but two parents also reported a reactivation of traumatic experiences during a medical simulation activity. All participants expressed a desire for further collaboration. Motivation to contribute gravitated around two central themes: helping others and helping themselves. Many wanted to give back, help other families, improve the system and meet with providers who had cared for their child. All stated that this kind of involvement empowered them and gave meaning to their experiences. Providers and researchers all reported positive experiences, mainly due to the unique perspectives of bereaved parents who took part in their projects.
CONCLUSIONS: With careful recruitment and supervision, some bereaved parents can become resource parents involved in different types of activities. It is important to understand the positive impacts this type of engagement can have on their healing process and to control the risks related to their participation. Research is needed to develop pertinent tools and measures to evaluate the outcomes and impacts of their participation.
This chapter characterizes meaning-making in the context of grief during bereavement, emphasizing its fundamentally social nature and offering several approaches to identifying the extent and nature of the meaning the bereaved has made of a loss. Theoretical developments and empirical research are presented to highlight the crucial role that meaning-making appears to play in recovery and posttraumatic growth following the death of a significant person. By contrast, disrupted meaning-making is described as a mediator of impairing bereavement outcomes, particularly prolonged grief disorder. Clinical procedures and techniques for facilitating meaning-making among the bereft are detailed, including a discussion of their therapeutic rationale and indications for their use in grief therapy. A case vignette illustrates the concepts and clinical processes reviewed in the chapter.
Research results suggest that illness can undermine patients' dignity and that dignity can be understood as an experience formed in communion with others. The aim of this study was, therefore, to illuminate the meanings of lived experiences of dignity as an intersubjective phenomenon from the perspective of dyads in palliative care. The authors analyzed transcripts from interviews with nine dyads using a phenomenological-hermeneutical method. Within the contexts of the dyadic relationship and the dyadic-health care professional relationship, the authors' interpretation revealed two meanings based on the participants' lived experiences: "Being available," related to responding and being responded to in terms of answerability and we-ness, and "Upholding continuity," linked to feeling attached through the maintenance of emotional bonds and being connected through upholding valued activities and qualities in daily living. The authors further reflected on the meanings in relation to philosophically grounded concepts such as presence, objectification, dependence, and dyadic body.
Dignity is a core topic within palliative care, and thus, it is important to get a detailed assessment of healthcare providers’ (HCPs) perspectives on this subject. This study aimed to explore various HCPs’ perspectives on end-of-life patients’ dignity by collecting different testimonies about what dignity entails and which strategies HCPs use to maintain patients’ dignity. A sample of 104 participants was interviewed using two open questions to collect qualitative data. Content analysis was performed to identify the central themes among answers. Regarding the first question (“What comes to your mind when I say “Dignity” in relation to your patients?”), nine themes emerged. The majority sampled stated that dignity means respecting the patient by considering him/her as a person in his/her entirety. Two other themes frequently emerged: “Respect the patient’s will/wishes/needs” and “Self-determination/Self-expression.” Concerning the second question (“Which strategies do you use to maintain patients’ dignity?”), seven themes emerged. The “Caring skills” theme was most frequently identified, followed by “Empathic skills” and “Professional strategies.” This study has enabled a better understanding of HCPs’ perspectives on end-of-life patients’ dignity. Through the interviews, HCPs were given an opportunity to reflect on dignity, possibly helping them improve their understanding of their patients’ conditions and promote higher quality of care.
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.