La pratique de l'assistance spirituelle en milieu hospitalier consiste, selon les textes législatifs, à répondre aux besoins spirituels du patient. Mais l'attente qu'éprouve un patient en fin de vie ne peut se réduire ni à un pur besoin, ni à un pur désir. A partir d'un travail anthropologique, philosophique et d'analyse des dialogues d'accompagnement, les notions d'hospitalité, de silence, de soin, de désir et d'éveil éclairent cette recherche. La présence siliencieuse répond en premier lieu à un appel exprimé par le patient. Cette hospitalité est un espace ouvert à une reconnaissance mutuelle de la vulnérabilité présente dans l'altérité. Le soin spirituel met en jeu le courage d'un travail intérieur. Il représente un secours capable de faire basculer la souffrance en clarté même en fin de vie ; il est une invitation au repos, à la confiance. Seul le silence peut signifier au patient, la nature de ce souffle qui l'habite et le transcende. Dans son accueil de l'impuissance, la présence silencieuse, comme soin spirituel, révèle la capacité d'éveil de la vie du patient jusqu'au dernier souffle comme un don.
Les services funéraires sont de plus en plus sollicités pour prendre soin des disparus et leur redonner vie et corps. Les mouvements psychiques qui accompagnent ces soins ont longtemps été déniés voire occultés. Pourtant il ne fait pas de doute que la rencontre avec le cadavre mobilise chez ceux qui y sont confrontés une dynamique subjective dont la logique est régie par l’émergence d’un monde fantasmatique propre à chacun. Les auteurs proposent d’explorer à partir d’une écoute clinique les enjeux de cette dynamique et le vécu de ces professionnels qui restent souvent livrés à leur propre solitude.
People with advanced dementia living in care homes can experience social death before their physical death. Social death occurs when a person is no longer recognised as being an active agent within their relationships. A shift is required in how we perceive people with advanced dementia so that the ways they continue to be active in their relationships are noticed. Paying attention to embodied and interembodied selfhood broadens the scope and opportunities for relationships with people with advanced dementia, acting as a counter to social death. This has the potential to improve the quality of care, including end of life care, of people with advanced dementia in care homes. This study examined the role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home. Empirical findings and their implications for the development of relationship-centred care and the Senses Framework in care homes are discussed.
OBJECTIVES: This study examined trajectories of emotional functioning in three domains (depressive symptoms, emotional and social loneliness) for individuals who experienced spousal bereavement, and investigated cross-domain adaptation. We hypothesized that emotional difficulties after bereavement would be more detectable in emotional loneliness than depressive symptoms or social loneliness.
METHOD: Using latent class growth analysis, we modelled changes in depressive symptoms, emotional loneliness and social loneliness from 12 years pre- to 12 years post-bereavement on data from 686 older adults to identify trajectories indicating adaptive and maladaptive functioning in each domain.
RESULTS: Most participants reported depressive symptoms below the clinically relevant threshold by showing a resilient (15.5%) or a slightly elevated (53.5%) trajectory post-bereavement. One-third (31%) reported clinically relevant depressive symptoms. More than half of the sample reported emotional loneliness post-bereavement, varying form prolonged (17%), increasing and prolonged (28.3%), and chronically high (8.9%) levels. Remaining participants displayed resilience (13.5%) or recovery (32.3%). Social loneliness showed four trajectories: very low and resilient (43.3%), low and resilient (27.5%), increasing (20.2%), and chronically high (9%) levels. One third of participants maintained adaptive, whereas 12% displayed maladaptive, functioning across all domains post-bereavement.
DISCUSSION: An increase in emotional loneliness was the most commonly observed change after spousal bereavement. This highlights the central role of emotional loneliness in depression after bereavement.
We investigate how daughters' feelings of loneliness are impacted when widowed parents develop health limitations, and when daughters take on personal care tasks in response. Using longitudinal data from daughters of widowed parents drawn from the French Family and Intergenerational Relationships Study (ERFI, 1485 observations nested in 557 daughters), we assess (a) whether health limitations of widowed parents are associated with daughters' feelings of loneliness regardless of whether or not daughters provide personal care and (b) whether there is an effect of care provision on loneliness that cannot be explained by parental health limitations. Fixed effect regression analyses show that widowed parents' health limitations were associated with raised feelings of loneliness among their daughters. No significant additional effect of providing personal care to a widowed parent was found. Prior research on the impact of health limitations of older parents on the lives of their adult-children has focused mostly on issues related to informal caregiving. Our findings suggest that more attention to the psychosocial impact of parental health limitations-net of actual caregiving-on adult children's lives is warranted.
This study explores how Danish students experience returning to school following parental bereavement. Eighteen focus group interviews with 39 participants aged 9 to 17 years were conducted. All participants had experienced the loss of a primary caregiver. Data collection was divided into two phases. In Phase I, 22 participants from four grief groups were interviewed 4 times over the course of a year. During Phase II, confirmatory focus groups were undertaken with the 17 participants. This article explores findings related to the four themes of initial school response, long-term support, challenges within the class, and academic challenges. The study found that (a) students struggle to reconnect with classmates following the return to school and often feel alone, (b) schools fail to have guidelines in place for what they are allowed to do if becoming sad the class, and (c) schools seem to forget their loss as time passes.
Objective: This study identified the predictors of incident loneliness in a group of seriously ill older adults (aged 65+) receiving home care.
METHOD: Existing data collected with the Resident Assessment Instrument for Home Care (RAI-HC) were utilized. A cohort of clients (N = 2,499) with two RAI-HC assessments and no self-reported loneliness at time 1 were included. Self-reported loneliness, upon reassessment, was the outcome of interest. Clients with a prognosis of less than six months or severe health instability were included.
RESULTS: The average length of time between assessments was 5.9 months (standard deviation = 4.10). During that time, 7.8% (n = 181) of the sample developed loneliness. In a multivariate regression model, worsening symptoms of depression, a decline in social activities, and not living with a primary caregiver all increased the risk of loneliness.
SIGNIFICANCE OF RESULTS: These results highlight how changes in psychosocial factors over time can contribute to loneliness, which can inform clinicians as they seek to identify those who may be at risk for loneliness.
The discourse of dying alone is negatively weighted and models of a good death identify not dying alone as a key outcome. Understanding why dying alone is viewed negatively and its effects on care is a priority. In separate focus groups with long-term care residents, family caregivers, and staff, we identified evidence for four different perspectives on the importance of presence at the time of death. However, while each individual had their own unique perspective on dying alone, the predominant view expressed across respondent groups was that having human connection near the end of one’s life was important.
The number of parents who have lost their only child (PLOCs) has increased annually with the implementation of the birth control policy in mainland China. This study aimed to investigate the mental health status of PLOCs and the influence of social support and resilience. Study 1 recruited 100 PLOCs and 88 nonbereaved parents, and compared differences in depression, anxiety, and loneliness. Study 2 investigated the influence of social support and resilience on the mental health of PLOCs via a mediating model. Results indicate that PLOCs reported more anxiety and depression symptoms than nonbereaved counterparts. Perceived close family support, objective support, and resilience negatively predicted anxiety and depression. In addition, perceived close family support was found to influence mental health via resilience. The current findings reveal that losing an only child has long-term negative impacts on the mental health of PLOCs. However, perceived close family support and objective support can protect their mental health either directly or indirectly via resilience.
Les dernières grandes lois promulguées fin 2015 et début 2016 (loi d'adaptation de la société au vieillissement et loi de modernisation du système de santé) ont confirmé le soutien par les pouvoirs publics du "domicile, en tant qu'indication de première intention pour le soin et l'accompagnement des personnes vulnérables". Ce numéro spécial permet d'appréhender le domicile dans toute sa diversité. Le lecteur aura accès à : - Une tribune de Serge Guérin, sociologue, "Penser la société de la longévité pour sortir de l'opposition domicile/maison de retraite" ; - Des interviews de Florence Leduc, Présidente de l'association Française des aidants, et d'un adhérent du champ du domicile qui nous parle des questions éthiques liées à ce sujet ; - Des témoignages sur des expériences innovantes comme l'EHPAD hors les murs ou le projet "voisinons ensemble" ; - Le point de vue des fédérations du domicile et des partenaires libéraux sur l'intervention à domicile d'ici 2028 ; - Les préconisations de la FEHAP.
Origine : BDSP. Notice produite par EHESP qFR0xGp8. Diffusion soumise à autorisation
L’histoire de Jeanne nous parle non seulement du sentiment de solitude et des blessures invisibles d’un groupe familial mais aussi d’une sollicitude possible des soignants et d’une famille envers une personne âgée désespérée qui va y puiser, à la fin de sa vie, un sentiment de sécurité et peut-être une consolation. La confrontation à des histoires de vie compliquées, chaotiques, parfois très éloignées des représentations idéalisées de familles exemplaires, unies et solidaires, peut être une source de réflexion et d’enrichissement personnel et professionnel.
Increasingly men are becoming widowed in later life due in part to a longer life expectancy. Social networks and social support are thought to help buffer the negative consequences of such later life transitions. This paper explores the personal communities of a group of older men experiencing widowhood. Qualitative in-depth interviews were conducted, September 2013-February 2014, with seven older widowers, 71-89 years of age, in North Staffordshire, UK. Interviews included personal community diagrams to identify the structure of the older men's social relationships. Data analysis comprised thematic analysis of interview transcripts and content analysis of personal community diagrams. Three overarching themes were identified from the interview data: "Personal identity and resilience assist transition," "Continuity in personal communities provides stability" and "Changes in social relationships and practices facilitate adaptation." The study identified three types of personal community among the older widowers, comprising different combinations of family, friends and others. The findings illustrate that some older widowers have very restricted personal communities which puts them at greater risk of loneliness and social isolation. The social needs of long-term carers should be addressed as isolation and loneliness can begin long before the death of a spouse. It is important to consider gender differences and preferences when designing interventions for older people in order to promote engagement, social inclusion and well-being.
OBJECTIVE: Caregivers to patients with primary malignant brain tumours neglect their own physical and emotional needs during the disease trajectory. The aim of the systematic review was to explore how informal caregivers of patients with primary malignant brain tumour (high-grade glioma (HGG)) experience and manage their life situation after the death of the patient.
METHODS: A systematic literature search was carried out in December 2016 and revised in September 2017. The following six databases were searched: PubMed, Cumulative Index of Nursing and Allied Health Literature, Excerpta Medica database, Scopus, PsycINFO and The Social Sciences Citation Index. Studies eligible for inclusion met the following criteria: (1) included bereaved caregivers to patients diagnosed with HGG =18 years, (2) described the caregiver’s perspective at post bereavement (3) had been peer-reviewed. The papers included were assessed for methodological quality using the Critical Appraisal Skills Programme.
RESULTS: Four qualitative articles, published from 2004 to 2015, met the eligibility criteria. Bereaved informal caregivers expressed profound grief and had unmet needs and questions related to the disease and their role as caregiver. Moreover, they experienced depressive symptoms and fatigue, resulting in a reduced work capability and social network.
CONCLUSIONS: We conclude that bereaved informal caregivers experience psychosocial consequences and emotional reactions after bereavement, resulting in feelings of isolation and loneliness. This review identified limited evidence on how the bereaved caregivers prefer to be supported, and further study is warranted. We suggest incorporating systematic information on bereavement in clinical practice and a cooperation across sectors.
THE HOLIDAYS often intensify the pain and sadness of grief. For those who grieve the loss of a loved one, holidays can be the hardest times. Traditionally, holidays involve sharing time with family members or observing religious practices. People may commemorate achievements, anniversaries, and birthdays during the holidays. Although holidays may produce warm feelings and memories for most of us, to a grieving person, the holidays can translate into days of intense sadness, anxiety, loneliness, and despair.
In addition to its emotional component, grief sometimes has physical, spiritual, and behavioral manifestations as well. It unites us as human beings because we're all survivors of loss.
Grief is the internal process experienced (feelings, emotions, and behaviors such as daydreams), and mourning is the external process, or rituals followed, based on values, beliefs, and cultural influences.
Grief can be understood as the unique healthy expression of love that accompanies loss, and mourning as the outward expressions of sorrow demonstrated by rituals, such as wearing black clothes or tearing a piece of clothing over one's heart.
This article explores how nurses can help patients, family members, and even themselves ameliorate intense feelings of grief experienced during the holidays.
BACKGROUND: Heart failure is a disease with high morbidity, mortality, and physical and psychological burden. More knowledge about the care provided for patients with heart failure close to death is needed.
OBJECTIVE: The aim was to describe key aspects of palliative care during the last week of life in patients with heart failure, as reported by healthcare professionals.
DESIGN: This is a national register study.
SETTING/SUBJECTS: The study included 3981 patients with diagnosed heart failure as the underlying cause of death.
MEASUREMENTS: Data were obtained from the Swedish Register of Palliative Care, a national quality register that focuses on patients' last week of life, independent of diagnosis or care setting. The register includes information about care interventions connected with key aspects of palliative care. Data are reported retrospectively by a nurse or physician at the healthcare unit where the patient dies.
RESULTS: Only 4.2% of patients with heart failure received specialized palliative care. In their last week of life, symptom prevalence was high, validated scales were seldom used, and symptoms were unsatisfactorily relieved. Around one-fifth (17%) of the patients in the study died alone. Less than half of family members had been offered bereavement support (45%). Moreover, one-third (28%) of the patients and more than half (61%) of the family members were reported to have had end-of-life discussions with a physician during the illness trajectory.
CONCLUSION: The results indicate inadequate palliative care for patients with heart failure during their last week of life.
We examined the relationship between living alone and the prevalence of depressive symptoms in older Korean widows and assessed the individual contributions of health, social ties, and socioeconomic factors to the development of depressive symptoms. The study was a secondary analysis using data from widows, 65 years of age and older, who participated in the Living Profiles of Older People Survey (LPOPS). A logistic regression analysis was used to evaluate the contributions of health, social ties, and socioeconomic factors to the development of depressive symptoms. Working status and equivalent household income were significantly associated with depressive symptoms in both those living with others and those living alone. Adjustment for health status and social ties did not change the impact of living alone on the prevalence of depressive symptoms. However, adjustment for equivalent household income eliminated the negative association between living alone and depressive symptoms. Our findings indicate that economic resources are more important than health and social ties for alleviating the negative impact of living alone on the development of depressive symptoms in older widows.
Background and Objectives: Men are at higher risk of experiencing poorer adjustment to widowhood compared to women, a transition that is associated with increased loneliness. Military service may play an important role in how men process widowhood, particularly among current cohorts of older men. The present study explores whether military experiences relate to better adjustment to widowhood, that is, reduction of loneliness associated with widowhood for men. We examine (a) whether military experience, especially exposure to death, shapes changes in loneliness following widowhood relative to those without military experience, and (b) if any observed benefits of military experience are explained by greater social engagement.
Research Design and Methods: We use the Health and Retirement Study and linked Veterans Mail Survey to address respondents while they are continuously married (T1) and at widowhood four years later (T2) using Ordinary Least Squares (OLS) regression. To address our hypotheses, we examine whether military experience without exposure to death, and/or military experience with exposure to death moderates the overall negative effect of widowhood for loneliness relative to civilians.
Results: There is a significantly lower level of loneliness among veterans with exposure to death relative to civilians who become widowed; however, veterans without exposure to death remain similar to civilian widowers. Social engagement does not explain the benefits associated with military exposures for widowers.
Discussion and Implications: Although exposure to death early in life is traumatic, our research suggests that such adversity within the specific context of the military may help enhance resilience during the transition to widowhood.
Les entretiens présentés dans cet ouvrage ont été enregistrés et diffusés par France-Culture en février-mars 1981. Ils ont été légèrement remaniés et complétés pour l'édition. Emmanuel Lévinas se raconte, s'explique, passe au crible de l'analyse les principaux thèmes de sa philosophie.
[D'après l'introduction et le résumé éditeur]