Cet ouvrage collectif porte un regard pluriel et multidisciplinaire sur les complications du deuil, à partir de récits cliniques et d’études empiriques réalisées dans des contextes culturels différents et lors de divers événements : le décès – inattendu ou non – d’un enfant, d’un conjoint ou d’une autre personne qui nous est chère, la perte de biens significatifs et celle d’objets immatériels importants (par exemple, le sentiment de sécurité). Ce livre s’adresse aux chercheurs qui s’intéressent à cette problématique et aux intervenants de la santé et des services sociaux qui accompagnent des personnes confrontées à la perte d’un être cher ou d’un bien significatif. Il propose notamment des approches et des outils d’intervention pour donner du sens à ce qui, parfois, n’en a pas.
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Background: Symptoms of grief vary by culture and societal reactions to death may be gender specific. We aimed to validate a Nepali language version of the Prolonged Grief-13 item scale (PG–13) among widows.
Methods: We tested two adapted versions of a Prolonged Grief Disorder (PGD) instrument with 204 Nepali-speaking widows: one was a Nepali translation of the original PG-13 items, while the other contained five additional items derived from qualitative research. We evaluated internal consistency, factor structure, and construct and criterion validity.
Results: Participants were on average 44 years old (SD=9.3), completed 6.7 years of school (SD=3.3) and had survived their husbands by 10 years (SD=8.1). Thirteen percent met global criteria for PGD. The removal of one original PG-13 item (felt emotionally numb) from both versions due to poor discriminant validity resulted in 12- and 17-item versions. Exploratory factor analysis supported a one-factor structure for the PG–12 and PG-17. Both versions of the scale exhibited high internal consistency (0.89 and 0.93 respectively). Confirmatory factor analysis suggested that symptoms of PGD were distinct from post-traumatic stress disorder (PTSD), anxiety and depressive symptoms. The PG-12 had lower sensitivity (74.1%) but higher specificity (83.6%) compared to the PG-17 (81.5% and 73.5% respectively).
Limitations: Psychosocial counselors’ clinical interview global ratings were used as the standard for comparison in criterion validity analyses. Generalizability to other socio-cultural (e.g. non-widowed, low-caste) populations and men in Nepal cannot be assumed.
Conclusions: Results indicate satisfactory psychometric properties and validity of both versions of the PG instruments, supporting their use with Nepali speaking widows.
CONTEXT: People bereaved from COVID-19 report higher levels of grief than people bereaved from natural causes. The full impact of this onslaught of grief will not be known for some time. Ensuring high quality bereavement care in the context of COVID-19 presents unprecedented challenges to end-of-life care.
OBJECTIVES: We aimed to determine how psychological symptoms explain functional impairment.
METHODS: A sample of people bereaved through COVID-19 (N = 307) in the United States completed demographic questions and self-report measures of neuroticism; symptoms of depression, generalized anxiety, posttraumatic stress, separation distress, and dysfunctional grief; and functional impairment due to a COVID-19 loss.
RESULTS: Most participants' scores were in the clinical ranges for generalized anxiety, depression, dysfunctional grief, and functional impairment. Functional impairment scores were not associated with age, gender, and time since loss but were associated with being diagnosed with COVID-19, having received professional help with the loss, and a close relationship to the deceased. A logistic regression model showed that, after controlling for covariates, the odds of functional impairment significantly increased by 27% for higher scores in separation distress, 25% for higher scores in dysfunctional grief, and 13% for higher scores in posttraumatic stress.
CONCLUSION: People bereaved due to COVID-19 are at risk of functional impairment, especially if they have symptoms of separation distress, dysfunctional grief, and/or posttraumatic stress. Attention to identifying and treating functional impairment may be important in facilitating grieving persons' full participation in social and economic life during and after the pandemic.
COVID-19 has not only dramatically changed the way we live, it has also impacted how we die and how we grieve. With more and more Americans dying in ICU settings, away from family, and more funerals being held virtually, the pandemic has seriously curtailed normal expressions of grief and cultural mourning. Given the CDC guidelines for funerals and social distancing, simple human touch is no longer a mitigating force against prolonged grief. So, while one epidemic has a face and a name, we point to a second, more silent yet potentially equally devastating one, unacknowledged grief, and emphasize how policy can be a current therapeutic. We can wait for a vaccine, but we can also act now through thoughtful policymaking that acknowledges this second epidemic.
BACKGROUND AND OBJECTIVES: Complicated grief (CG) is severe, prolonged (>12 months) grieving. Complicated grief disproportionately affects older adults and is associated with negative physical/psychological effects. Although treatment options exist, those which do are time-intensive. We report on a randomized clinical trial (RCT) which examined whether accelerated resolution therapy (ART), a novel mind-body therapy, is effective in treating CG, post-traumatic stress disorder (PTSD), and depression among hospice informal caregivers.
RESEARCH DESIGN AND METHODS: Prospective 2 group, wait-listed RCT. All participants were scheduled to receive 4 ART sessions.
INCLUSION: >=60 years, inventory of CG >25, and PTSD checklist for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition >33 or Psychiatric Diagnostic Screen Questionnaire PTSD subscale >5.
EXCLUSION: Major psychiatric disorder, other current psychotherapy treatment. Depression was measured by the Center for Epidemiologic Studies Depression.
RESULTS: Mean (standard deviation [SD]) age of 54 participants was 68.7 (7.2) years, 85% female, and 93% white. Participants assigned to ART reported significantly greater mean (SD) CG reduction (-22.8 [10.3]) versus Wait-list participants (-4.3 [6.0]). Within-participant effect sizes (ESs) for change from baseline to 8-week post-treatment were CG (ES = 1.96 (95% confidence interval [CI]: 1.45-2.47; P < .0001), PTSD (ES = 2.40 [95% CI: 1.79-3.00]; P < .0001), depression (ES = 1.63 [95% CI: 1.18-2.08; P < .0001). Treatment effects did not substantially differ by baseline symptom levels.
DISCUSSION AND IMPLICATIONS: Results suggests that ART presents an effective and less time-intensive intervention for CG in older adults. However, it should undergo further effectiveness testing in a larger, more diverse clinical trial with a focus on determining physiological or behavioral mechanisms of action.
Le deuil compliqué demeure un sujet à controverse. Bien que ce concept se retrouve dans de nombreuses cultures, peu d’études scientifiques abordent les complications du deuil dans une perspective transculturelle. Cet article, qui repose sur la présentation d’un cas clinique et une revue de la littérature, décrit les particularités du deuil selon les cultures et en contexte d’immigration. Il offre un regard transculturel sur le deuil dit compliqué et discute les limites des classifications internationales pour diagnostiquer les complications d’un deuil selon les cultures. En influençant le processus même du deuil, ses manifestations cliniques et ses complications éventuelles, la culture et la religion peuvent rendre complexe la distinction entre un deuil normal et un deuil compliqué en contexte interculturel. Le concept de deuil compliqué est discuté en mettant en avant l’importance d’une approche culturellement sensible pour en permettre une évaluation clinique appropriée. Nous soulignons la question centrale du sens donné à la mort et aux symptômes vécus en période de deuil, et la pertinence d’un regard critique sur le risque de médicalisation du deuil et les limites des classifications internationales, DSM-5 et CIM-11. Les nouvelles nosographies devraient bénéficier d’une plus grande précision concernant les complications du deuil selon les cultures non occidentales, en incluant des déterminants spécifiques liés à la culture, comme les systèmes de croyances entourant une « mauvaise mort » et les interprétations culturelles des rêves où figure une personne défunte.
OBJECTIVES: The loss of a child is a devastating event, and bereaved parents often suffer intense and long-lasting grief reactions and are at risk for psychological symptoms. More knowledge about how parents cope with grief may improve the support to bereaved parents. This study, therefore, aimed to explore parents' views on what facilitated or complicated their grief coping after losing a child to cancer.
METHODS: This study was derived from a nationwide postal survey. Cancer-bereaved parents (n = 161) provided written responses to two open-ended questions: "Is there anything that has helped you cope with your grief after your child's death?" and "Is there anything that made it difficult for you to cope with your grief?" Content analysis was used to analyze the responses.
RESULTS: Parents reported that a supportive social network of family and friends, and having remaining children, facilitated their coping with grief. Meeting professional counselors and meeting other bereaved parents, connecting to memories of the deceased child in various contexts, including school and pediatric care settings, were also reported facilitating grief coping. Parents stated that the following experiences had complicated grief coping: additional losses in their family or social network; not being able to share emotions with their partner; when they perceived that friends, relatives, or colleagues lacked empathy or patience; when they felt challenging demands from employers at a too early stage.
SIGNIFICANCE OF RESULTS: This study contributes to the understanding of parents' grief experiences and what has facilitated or complicated their coping with grief, which can help health care professionals and others improve bereavement support services.
Une « bonne mort », un deuil serein, cela existe, mais la recherche en parle bien peu. En fait, ce sont les trajectoires difficiles et les embuches sous-jacentes qui font surtout l’objet des études, avec raison d’ailleurs puisque l’objectif relève souvent de la volonté d’offrir aux personnes endeuillées un accompagnement qui réponde à leurs besoins.
Si le deuil compliqué est aujourd’hui une entité clinique reconnue chez l’adulte, il reste encore particulièrement difficile à appréhender chez l’enfant, tout comme le sont les autres complications du deuil. Dans le présent article, nous rappelons d’abord la spécificité du deuil chez l’enfant. Puis, nous évoquons ce qu’il en est des complications du deuil infantile. Et finalement, nous abordons les perspectives de prises en charge possibles de ces enfants et de leurs proches dans ces contextes si spécifiques de deuil compliqué.
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.
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.
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.
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.
Background: Prolonged grief disorder (PGD) is a new mental health disorder included in the WHO ICD-11 however, the operationalization of the disorder criteria still needs to be empirically validated, particularly in different cultural contexts. Here we provide a preliminary validation study of the new International Prolonged Grief Disorder Scale (IPGDS) that serves to be the first self-report questionnaire directly based on the ICD-11 PGD and contains culturally adapted items.
Methods: In addition to core symptom items new culturally specific items were developed in two phases. Phase 1: key informant interviews with 10 German-speaking and 14 Chinese experts in grief and mental health, followed by a focus group with four bereaved German-speaking participants. Phase 2: 214 German-speaking and 325 Chinese bereaved participants completed self-report questionnaires.
Results: Phase 1 resulted in 19 potential culturally relevant items (e.g. feeling stuck in grief). Phase 2 exploratory factor analysis confirmed the one-dimensional nature of the IPGDS, additionally the 32-item scale revealed two factors (core grief and culturally specific symptoms). Psychometric analysis revealed strong internal consistency, concurrent validity and criterion validity.
Limitations: The German-speaking and Chinese samples significantly differed in terms of several demographic variables including age, gender and type of loss.
Conclusions: This preliminary validity study confirms that the IPGDS is a valid and reliable measure of the new ICD-11 PGD guidelines. This is the first scale of disordered grief to contain both core items and culturally specific supplementary items and aims to improve the clinical utility of the ICD-11 narrative approach.
OBJECTIVES: Family conflict and family functioning were regarded as changeable factors associated with complicated grief (CG) and major depressive disorder (MDD) in the bereaved families of patients with advanced cancer, although the evidence is limited. We explored the family functioning associated with CG and MDD developing either independently or co-morbidly in the bereaved families of patients with advanced cancer who died in palliative care units (PCUs).
METHODS: This study comprised a nationwide cross-sectional questionnaire survey of bereaved family members of cancer patients who died in Japanese PCUs participating in evaluation of the quality of end-of-life care.
RESULTS: A total of 529 questionnaires (69.2%) were returned, and we analyzed a total of 458 responses. A total of 14.2% of participants were considered as having CG, 22.5% as having moderate to severe depression, and 9.6% as having co-morbid symptoms. Multivariate logistic regression analysis revealed that many family members insulted or yelled at one another (odd ratio (OR): 2.99, p=0.046; OR:2.57, p=0.033), and conflict regarding what is meant by a good death (OR:3.60, p=0.026; OR:4.06, p=0.004) was significantly positively associated with CG, MDD, and co-morbid symptom.
CONCLUSIONS: Specific family conflicts may increase the incidence of CG, MDD, and co-morbid symptoms in the bereaved families of patients with advanced cancer. Our results may encourage health care providers to approach discussions about end-of-life issue with the patient and their family in advance, especially focusing on what is considered a good death for the patient, which may prevent or resolve the family conflict.
Background: The health of caregivers can be affected during end-of-life caregiving. Previous cross-sectional studies have indicated an association between poor health status and prolonged grief disorder, but prospective studies are lacking.
Aim: To describe physical and mental health status in caregivers of patients at the end of life, and to investigate whether caregivers’ health status during caregiving predict prolonged grief disorder.
Design: A population-based prospective survey was conducted. Health status was measured in caregivers during caregiving (SF-36), and prolonged grief disorder was assessed 6 months after bereavement (Prolonged Grief-13). We calculated mean scores of health status and explored the association with prolonged grief disorder using logistic regression adjusted for age, gender and education.
Setting/participants: The health in caregivers of patients granted drug reimbursement due to terminal illness in Denmark in 2012 was assessed during caregiving and 6 months after bereavement (n = 2125).
Results: The SF-36 subscale ‘role-physical’ concerning role limitations due to physical health, the ‘mental health’ component score, and all ‘mental health’ subscales showed significantly worse health in the participants than in the general population. Both poor physical health (adjusted OR: 1.05 (95% CI: 1.04–1.07)) and poor mental health (adjusted OR: 1.09 (95% CI: 1.07–1.11)) predicted prolonged grief disorder.
Conclusion: Caregivers scored lower on one physical subscale and all mental health measures than the general population. Prolonged grief disorder was predicted by poor physical and mental health status before bereavement. Future research is needed on the use of health status in systematic assessment to identify caregivers in need of support.
Research suggests variation in how grief develops across time, and gender may account for some of this variation. However, gender differences in growth patterns of the newly codified ICD-11 prolonged grief disorder (PGD) are unknown. This study examined gender-specific variances in grief trajectories in a registry-sampled cohort of 857 spousal bereaved individuals (69.8% female). Participants completed self-report questionnaires of PGD symptoms at 2, 6, and 11 months post-loss. Using Growth Mixture Modeling, four PGD trajectories emerged: resilient characterized by low symptoms (64.4%), moderate-stable characterized by moderate symptoms (20.4%), recovery characterized by elevated symptoms showing a decrease over time (8.4%), and prolonged grief characterized by continuous elevated symptoms (6.8%). Similar proportions of men and women comprised the four trajectories. Gender influenced the parameter estimates of the prolonged grief trajectory as men evidenced more baseline symptoms (higher intercept) than women did and a decreasing symptom-level (negative slope), while women showed symptom-increase over time (positive slope). The prolonged grief trajectory captured the largest proportion of probable PGD cases in both genders. Low optimism and low mental health predicted membership in this class. Altogether, the absolute majority of both men and women followed a low-symptom resilient trajectory. While a comparable minority followed a high-symptom prolonged grief trajectory, men and women within this trajectory expressed varying symptom development. Men expressed prolonged grief as an acute, decreasing reaction, whereas women showed an adjourned, mounting grief reaction. This study suggests that gender may influence symptom development in highly distressed individuals across early bereavement.