Perdre un proche marque une rupture dans nos vies. Cette rupture interagit avec un collectif, les lieux où nous vivons ou encore les structures sociales et politiques qui norment nos existences. Face à l'apparente solitude du deuil, la mort de l’autre interroge notre identité en tant qu’êtres fondamentalement relationnels. Traverser un deuil, c’est se retrouver confronté à la violence et au non-sens de la perte sur lesquels aucun mot, de prime abord, ne peut être posé. C’est pourtant à partir de cet indicible et incommunicable du deuil que peut émerger la question du sens et d’un rapport à soi, aux autres et au monde redéfini par la perte.
Dans la continuité de l’expérience, les savoirs et les discours sur le deuil et la perte influencent nos représentations de la mort et de l’accompagnement de la fin de vie. Ils interrogent plus largement le lien social : en quoi la réflexion sur le deuil nous engage en tant que citoyen.ne ? L’expression « faire son deuil » est alors à questionner : loin d’un impératif, il est question d’ouvrir des pistes de réflexion autour de la créativité humaine – parfois inattendue – face à l’expérience de souffrance et de rupture que constitue la mort de l’autre.
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.
The following self-analysis contains key experiences of maternal grief over the course of the first 2 years following the death of a child, with specific examples and observations from bereaved mothers shared with the author. The references provide supporting evidence for commonality of the lived experience and observations. Therapeutic responses for clinicians give concrete direction for providing effective comfort. Self-care suggestions for mothers provide specific guidance for the readers. A 14-year retrospective epilogue puts the charged emotional description into a context of healing.
PURPOSE: Family caregivers of a loved one with a life-limiting or terminal illness are often overwhelmed by, and underprepared for, their responsibilities. They often need help from family members and friends to provide comprehensive care. When death occurs, funerals and other death-related rituals bring family and communities together to honor the life and mourn the death of a loved one and provide needed support to family and caregivers. These collective rituals are often deeply rooted in culturally-bound values and can facilitate grief and help make sense about loss. Rituals act as bridge-building activities that allow people to organize and appraise emotions, information, and actions after a loss. With the emergence of the coronavirus disease-2019 (COVID-19) pandemic and the recommended restrictions to reduce infection and transmission, family members and caregivers are often faced with weighing options for honored rituals to help them grieve. Grieving during the pandemic has become disorganized. The purpose of this article is to provide case managers and other clinical staff with recommendations on guiding caregivers/families through safety precautions when a loved one dies either because of a life-limiting illness or from COVID-19 during the pandemic using guidelines from the Centers for Disease Control and Prevention (CDC). The authors also present information about complicated grief and ways to support coping with death and suggest safe alternatives to traditional death-related rituals and funerals in a COVID-19 era.
PRIMARY PRACTICE SETTING(S): Primary practice settings include home health care, hospice, hospital discharge planning, case management, and primary care.
FINDINGS/CONCLUSIONS: Precautions necessary in a COVID-19 era may add anxiety and stress to an already difficult situation of caring for loved ones at end-of-life and grieving with their loss. Utilization of CDC guidelines lessens the risk of infection while honoring loved ones' wishes and cultural traditions surrounding death and burial. Recognition of social and spiritual connections that comfort mourners must also be considered.
IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: .
OBJECTIVE: No prior studies have used a single sample of bereaved families of cancer patients to compare multiple scales for assessing Complicated Grief. Here, we compare the two measures.
METHODS: We sent a questionnaire to the bereaved families of cancer patients who had died at 71 palliative care units nationwide.
RESULTS: The analysis included 3173 returned questionnaires. Prevalence of Complicated Grief was 7.8% by Brief Grief Questionnaire (with a cutoff score of 8) and 15.5% for Inventory of Complicated Grief (with a cutoff score of 26). The Spearman's correlation coefficient between the Brief Grief Questionnaire and the Inventory of Complicated Grief was 0.79, and a ceiling effect was seen for the distribution of the Brief Grief Questionnaire scores. Although 6.4% of respondents scored both 8 or higher on the Brief Grief Questionnaire and 26 or higher on the Inventory of Complicated Grief, only 1.4% scored both 8 or higher on the Brief Grief Questionnaire and <26 on the Inventory of Complicated Grief. In contrast, 9.1% scored <8 on the Brief Grief Questionnaire but 26 or higher on the Inventory of Complicated Grief.
CONCLUSION: The prevalence of Complicated Grief was estimated to be higher by the Inventory of Complicated Grief than by the Brief Grief Questionnaire in this sample. Patients with severe Complicated Grief might be difficult to discriminate their intensity of grief by the Brief Grief Questionnaire. Once the diagnostic criteria of Complicated Grief are established, further research, such as optimization of cutoff points and calculations of sensitivity and specificity, will be necessary.
STUDY AIMS: 1) To characterize distinct profiles of cancer caregivers' physical and mental health during the end-of-life caregiving period; 2) to identify the background and antecedent factors associated with the distinct profiles of caregivers; 3) to determine the relevance of caregiver profiles to the risk for developing prolonged grief symptoms.
DESIGN & METHODS: This study was a secondary analysis of spouses/partners (n = 198) who participated in the Cancer Caregiver Study. Latent profile mixture modeling was used to characterize caregiver health profiles from data collected prior to their spouse's death. Regression analyses were used to determine the impact of caregiver health profiles on the risk of developing prolonged grief symptoms (PG-13 scale).
RESULTS: Two health profiles were identified, one of which was comprised of a minority of caregivers (n = 49; 25%) who exhibited higher anxiety and depressive symptoms, greater health impact from caregiving, more self-reported health problems, and greater difficulty meeting physical demands of daily activities. Caregivers who were observed in this poorer health profile had significantly lower levels of active coping (p < 0.001) in adjusted models. Additionally, according to subsequent bereavement data, caregivers' preloss health profile was a significant predictor of developing prolonged grief symptoms (p = 0.018), controlling for caregivers' age (p = 0.040) and amount of active coping (p = 0.049), and there was a mediating effect of caregiver health on the relationship between active coping and prolonged grief symptoms.
CONCLUSIONS: Caregiving and bereavement should not be considered separately; caregivers adapt to bereavement with the resources and coping attained throughout the life course, culminating in the experience of providing end-of-life care. Interventions aimed at supporting caregivers and bereaved persons should focus on maintaining physical and mental health during stressful life transitions, and especially during the period in which they are providing care to a spouse at end-of-life.
Objectives: Evidence linking end-of-life-care quality in ICUs to bereaved family members’ psychologic distress remains limited by methodological insufficiencies of the few studies on this topic. To examine comprehensively the associations of family surrogates’ severe anxiety and depressive symptoms with end-of-life-care quality in ICUs over their first 6 months of bereavement.
Design: Prospective, longitudinal, observational study.
Setting/Participants: Family surrogates (n = 278) were consecutively recruited from seven medical ICUs at two academically affiliated medical centers in Taiwan.
Measurements and Statistical Analysis: Family surrogates’ anxiety and depressive symptoms were assessed 1, 3, and 6 months postloss using the Hospital Anxiety and Depression Scale. Family satisfaction with end-of-life care in ICUs was assessed 1-month postloss by the Family Satisfaction in the ICU questionnaire. Patients’ end-of-life care was documented over the patient’s ICU stay. Associations of severe anxiety and depressive symptoms (scores = 8 for each subscale) with end-of-life-care quality in ICUs (documented by patient care received and family satisfaction with end-of-life care in ICUs) were examined by multivariate logistic regression models with generalized estimating equation.
Main Results: Prevalence of severe anxiety and depressive symptoms decreased significantly over time. Surrogates’ lower likelihood of severe anxiety or depressive symptoms 3–6 month postloss was associated with death without cardiopulmonary resuscitation, withdrawing life-sustaining treatments, and higher family satisfaction with end-of-life care in ICUs. Bereaved surrogates’ higher likelihood of these symptoms was associated with physician-surrogate prognostic communication and conducting family meetings before patients died.
Conclusions: End-of-life-care quality in ICUs is associated with bereaved surrogates’ psychologic well-being. Enhancing end-of-life-care quality in ICUs by improving the process of end-of-life care, for example, promoting death without cardiopulmonary resuscitation, withdrawing life-sustaining treatments, and increasing family satisfaction with end-of-life care, can lighten bereaved family surrogates’ severe anxiety symptoms and severe depressive symptoms.
BACKGROUND: A recent randomized trial of bereaved family members of patients who died in an intensive care unit identified symptoms of depression and posttraumatic stress in recipients of semistructured condolence letters.
OBJECTIVES: To explore family member and clinician experiences with receiving or sending handwritten sympathy cards upon the death of patients involved in a personalized end-of-life intervention, the 3 Wishes Project.
METHODS: Interviews and focus groups were held with 171 family members and 222 clinicians at 4 centers to discuss their experiences with the 3 Wishes Project. Interview transcripts were searched to identify participants who discussed sympathy cards. Data related to sympathy cards were independently coded by 2 investigators through conventional content analysis.
RESULTS: Sympathy cards were discussed during 32 interviews (by 25 family members of 21 patients and by 11 clinicians) and 2 focus groups (8 other clinicians). Family members reported that personalized sympathy cards were a welcome surprise; they experienced them as a heartfelt act of compassion. Clinicians viewed cards as an opportunity to express shared humanity with families, reminding them that they and their loved one were not forgotten. Signing cards allowed clinicians to reminisce individually and collectively with colleagues. Family members and clinicians experienced sympathy cards as a meaningful continuation of care after a patient's death.
CONCLUSIONS: Inviting clinicians who cared for deceased patients to offer personalized, handwritten condolences to bereaved family members may cultivate sincere and individualized expressions of sympathy that bereaved families appreciate after the death of patients involved in the 3 Wishes Project.
Posttraumatic stress disorder (PTSD) and prolonged grief disorder (PGD) are well-documented in parentally bereaved adolescents. Whether or not the parent's death is perceived as traumatic may be influenced by several end-of-life-related factors. This study aimed to examine the associations between end-of-life-related factors, symptoms of posttraumatic stress disorder (PTSD), symptoms of prolonged grief disorder and PGD, and the association between PTSD and PGD. Mann-Whitney U tests and Spearman correlation were used to analyze the relationships between end-of-life-related factors, PTSD, and PGD. Regretting one's decision to be present or not present at the time of death resulted in a significant difference in self-reported scores for PTSD, but not PGD.
Losing a loved one is among the most common and stressful traumatic events that a child or and adolescent can experience and can be associated with mental health and somatic disorders, as well as a range of life issues and potentially negative outcomes that may impact longitudinal development. Complicated grief, a disorder that has been studied primarily among adults, has received increasing recognition among children and adolescents in recent years. The demonstration of the distinctive character of grief reactions in relation to major depressive disorder and posttraumatic stress disorder has resulted in the inclusion of “persistent complex bereavement disorder” in an annex section of DSM-5 and of “prolonged grief disorder” in ICD-11. The grieving process in children and adolescents is not linear and is often characterised by periods of regression. Developmental phases should be taken into account to understand and clinically describe grief reactions occurring during childhood and adolescence. There are currently numerous interventions for bereaved children and adolescents, but little evidence to support them. More research focusing on the understanding of the underlying mechanisms and the risk factors for complicated grief among children and adolescents, as well as the implementation of evidence-based interventions, is definitely warranted.
Les personnes qui participent aux rencontres proposées par Jalmalv Grenoble, dans le cadre de l’atelier « Face à la mort, où en suis-je dans ma vie ? », ont pour la plupart vécu l’accompagnement d’un proche, dans le cadre familial ou amical. Cette expérience forte a laissé des traces. Elle est souvent évoquée au cours des réunions et continue à nourrir leur réflexion.
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Limited longitudinal studies have hindered the understanding of family adaptation after loss of a loved one in an intensive care unit (ICU). Based on the Double ABCX Model, this study examined changes in adaptation to bereavement for family members in the first year after the ICU death, with special attention to the effects of race/ethnicity. A repeated-measures design was used to conduct the investigation using 3 time points (1-3, 6, and 12 months) after the ICU death. Data were analyzed using linear mixed modeling. Family members (n = 30) consisted of 60% non-Hispanic Whites and 40% African Americans (AAs). During the first 1 to 3 months, moderate to severe symptoms of posttraumatic stress disorder, depression, anxiety, and stress were found (60%, 40%, 30%, and 26.7%, respectively). Initially, non-Hispanic Whites had higher depression scores than African Americans. The change in depression and posttraumatic stress disorder symptoms over 1 year differed by race/ethnicity. Many family members tended to be at risk of psychological sequelae in the early months after a patient's death in an ICU. Racial/ethnic differences in bereavement process need further exploration to understand the broader context within family members grieve and effectively offer support over the course of the first year.
Anne-Dauphine Julliand a perdu ses deux filles, Thaïs et Azylis, d’une maladie orpheline.
"J’ai beaucoup souffert et je souffre encore, écrit-elle. Mais j’ai appris la consolation, ce délicat rapport à l’autre: s’approcher, toucher, parler. »
Grâce à des scènes vécues, Anne-Dauphine partage ses réflexions qui touchent juste. Si elle évoque bien sûr sa famille, son livre est aussi un hommage à tous les consolants : une soeur qui vous prend dans les bras, une infirmière qui s’assoit quelques minutes au bord du lit et prend juste le temps « d’être là ».
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Disaster Falls : le nom d’un lieu perdu – des rapides sur la Green River entre l’Utah et le Colorado. Mais le nom, aussi, d’un événement tragique. A l’été 2008, lors d’un voyage organisé, le kayak dans lequel Stéphane Gerson naviguait avec son fils Owen chavira dans ces eaux froides. Après trois heures de recherches, on retira de l’eau le corps d’Owen. Il avait huit ans.
Au croisement du récit, de la chronique et de l’enquête, Disaster Falls entretisse les émotions du père, l’analyse de l’historien et la quête de sens. L’histoire hante le livre, que ce soit celle de ces rapides depuis leur découverte en 1869 ; celle de l’expérience du deuil parental (Shakespeare, Mallarmé, Hugo...) ou celle de catastrophes collectives qui, de la Shoah au 11-Septembre 2001, interfèrent également dans ce désastre familial.
Les derniers chapitres de Disaster Falls s’ouvrent à une autre vision de la mort. Deux ans après l’accident, le père de Stéphane Gerson, atteint d’un cancer inopérable, opte pour l’euthanasie en Belgique. Après avoir perdu un fils, l’auteur accompagne maintenant les derniers jours de son père. Autre filiation, autre mort – une mort acceptée, apaisée, faite sienne. "J’étais un vivant entre deux disparus."
Les mesures de confinement qui prévalent dans plus d'une centaine de pays touchés par la pandémie de COVID-19 ont bouleversé de manière tragique l'accompagnement des personnes en fin de vie et le processus de deuil de leurs proches aidants. Dans cet article, nous recensons les écrits sur le deuil et analysons les conséquences potentielles du contexte de pandémie sur l'expérience des individus endeuillés. Ensuite, nous explorons les modalités de soutien alternatives qui s'offrent aux personnes éprouvées par la perte d'un proche en raison de la pandémie. Puis, en nous appuyant sur la littérature répertoriée et sur le modèle des communautés compatissantes, nous présentons le projet "J'accompagne", dont la mission est de créer une communauté virtuelle de soutien autour des proches aidants et des endeuillés par la COVID-19.
Cet ouvrage rend compte d'un accompagnement pour les parents qui ont perdu un bébé pendant la grossesse ou dans les semaines qui suivent la naissance : « Les groupes de parole de parents endeuillés. » Il s'adresse aux parents et aux professionnels. Il peut être une aide précieuse pour tous ces parents qui vivent une souffrance sans commune mesure avec la mort de leur bébé et aux professionnels qui les rencontrent dans ce temps du deuil périnatal. La conjugaison de la parole, du témoignage des parents et de l'analyse clinique des séances nous indique le traumatisme, la double perte auxquels les parents sont confrontés : la perte de leur enfant et la menace d'une perte du sens de la vie. La situation groupale ainsi que la force de la pensée et de la parole permettent de prendre en compte la complexité de la situation. Ce dispositif met en perspective le cheminement et les ressources des parents au fil des séances.
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Les trois auteures vivent chacune le deuil d'un enfant. Elles évoquent cette blessure ainsi que leur deuil. Elles expliquent comment elles ont pu avancer dans leurs vies malgré la souffrance, en découvrant que le lien créé avec leur fils dépasse les frontières de la mort.
Après le récit de la mort de son propre frère lorsqu'elle était enfant, la psychothérapeute Marie-Camille Carton de Wiart analyse divers témoignages de personnes ayant perdu un proche, recueillis au cours de sa pratique de spécialiste de l'accompagnement du deuil. Elle propose ensuite une démarche de méditation des textes bibliques destinée à accompagner ceux qui traversent cette épreuve.
Aim: This study aims to explore the experiences of bereavement after stillbirth of Pakistani, Bangladeshi and White British mothers in a town with multi-ethnic populations in England.
Participants: A purposive sample of Pakistani, Bangladeshi and White British mothers aged over 16 (at time of infant birth), who suffered a stillbirth in the preceding 6–24 months and residing in a specified postcode area were invited to take part in the study, by an identified gatekeeper (audit midwife) from the local National Health Service Trust, in addition to local bereavement charities.
Design: Qualitative methods using face-to-face semi-structured interviews were undertaken, recorded and transcribed verbatim. Using framework analysis, several themes were identified.
Findings: There were three main themes identified from the data; 1. knowledge and information of pregnancy and perinatal mortality; 2. attitudes and perceptions to pregnancy and perinatal mortality and 3. experiences with maternity care. The findings revealed mostly similarities in the bereavement experiences of the Pakistani, Bangladeshi and White British mothers. A few cultural and religious differences were identified.
Conclusions: This study found important similarities in bereavement experiences of Pakistani, Bangladeshi and White British mothers and highlights considerations for policy makers and maternity services in how the timing of bereavement after care is provided, including advice surrounding the infant post-mortem. 209
Background: This study compares a longitudinal population-based sample of spouses bereaved by suicide and those bereaved by other sudden deaths to determine if suicide-bereaved spouses (SBS) experience greater rates of physician-diagnosed mental disorders.
Methods: First, married individuals whose spouse died by suicide, sudden natural death (SND) and unintentional injury (UI) were compared to non-bereaved matched cohorts to determine if there were differences in mental disorder rates between bereavement groups and non-bereaved matches. Second, SBS (n = 365), spouses bereaved by SND (n = 1000), and spouses bereaved by UI (n = 270), were compared using inverse probability treatment weighting and generalized estimating equations to calculate relative rates of mental disorders 5 years before/after death.
Outcomes: All bereaved cohorts had higher rates of mental disorders compared to non-bereaved cohorts. SBS had the greatest rate of depression post-bereavement (50·96%), followed by UI (38·52%) and SND (33·70%) spouses. When comparing bereavement cohorts, a significant group-by-time interaction (P = 0·047) revealed the rate change for depression was significantly different between suicide and UI-bereaved spouses, with SBS having higher rates of depression before bereavement. SBS had increased rates of any mental disorder both pre (ARR = 1·35, 95% CI = 1·03-1·18, P<·05) and post spousal death (ARR = 1·24, 95% CI = 1·03-1·45, P<·05) when compared to UI spouses signifying pre-existing mental disorders. Post-bereavement, SBS had greater rates of depression only when compared to SND-bereaved spouses (ARR = 1·31, 95% CI = 1·10-1·55, P<·01). Interpretation: SBS have the greatest rates of depression and any mental disorder before the death of their spouse, suggesting suicide bereavement may be unique. Sudden spousal bereavement is a vulnerable time for mental disorders.