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.
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.
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.
Palliative care (PC) focuses on caring for the whole person, from birth to death, while managing symptoms and helping to navigate medical complexities. Care does not stop at the time of death, however, as assisting patients, families, and fellow clinicians through grief and bereavement is within PC's purview. Unfortunately, many clinicians feel unprepared to deal with these topics. In this article, PC and hospice clinicians define and explain bereavement, distinguish normative grief from pathological grief, offer psychometrically sound scales to screen and follow those suffering from grief, and discuss the interaction between grief and bereavement and the physical and mental health of those who are left behind after the death of a loved one.
Background: While grief research has focused on death-related losses and distressed outcomes, contemporary findings suggest that role losses can lead to grief, and growth can accompany grief. The current study aimed to replicate and extend the Papa, Lancaster, & Kahler, 2014 study by: (1) assessing common loss responses (prolonged grief, major depression, posttraumatic stress) and role centrality among bereaved, divorced, and unemployed individuals, and (2) exploring posttraumatic growth and stress appraisals among loss groups.
Method: A cross-sectional online survey was completed by 372 recently bereaved, divorced, and unemployed individuals. Exploratory factor analysis assessed common loss responses in the bereaved group. In the sample, multiple regressions assessed the relationship between role centrality, stress appraisals, and outcome variables (prolonged grief, posttraumatic growth); correlational analysis assessed the relationship between posttraumatic growth and psychopathology variables; qualitative analysis assessed examples of posttraumatic growth.
Results: A subset of each loss group reported prolonged grief and posttraumatic growth. Prolonged grief was a distinct factor from major depression and posttraumatic stress. Role centrality and stress appraisals were significantly associated with outcome variables. There was a weak, positive relationship between posttraumatic growth and psychopathology variables.
Limitations: Limitations included convenience sampling and a cross-sectional study design, which precluded assessing responses over time. Strengths included replicating existing literature and incorporating a strength-based measure.
Conclusions: Prolonged grief can emerge from death-related loss and role loss. Also, posttraumatic growth can accompany prolonged grief. In clinical practice, loss can be conceptualized broadly beyond bereavement and addressed with the potential for posttraumatic growth.
In few periods in human history have bereavement and grief been on so many people's minds as they are today. As the coronavirus disease 2019 (COVID-19) ravages the world, we have seen many perish in a short time. Many have died alone because of requirements for physical distancing. Even more will succumb as COVID-19 continues to spread. Moreover, deaths from other causes, numbering over 50 million annually, are also happening amid physical distancing and other COVID-19-related challenges. The pandemic is affecting the way terminally ill patients are being cared for, when and how people are dying of other causes, and how bodies are being handled and bereavement rituals performed. The bereaved are required to grieve without the support of usual social and cultural rituals. Grieving is further encumbered by cascading life stressors deriving from policies needed to mitigate the pandemic. Though we are often heartened by human resilience in response to death and other hardships, for some, the burden of this pandemic will be too much. Among other mental health problems, we will likely see an increase in prolonged grief disorder. In this commentary, we review the new diagnosis of prolonged grief disorder and outline why we might anticipate increased rates of this condition on the heels of COVID-19, especially among older persons. We suggest ways we might mitigate this emerging problem.
Background: Bereaved individuals are known to have greater health risks, such as insomnia, excessive alcohol intake, and depression. However, few studies have investigated the relation between these risks and bereavement outcomes, namely complicated grief (CG) and major depressive disorder (MDD). This study aimed to assess the relation between insomnia, changes in alcohol consumption, and CG or MDD.
Methods: A cross-sectional, self-report questionnaire survey was conducted between May and July 2014 on 20 acute hospitals, 133 inpatient palliative care units (PCUs), and 22 home hospice services. Questionnaires were sent to the bereaved family members identified by each institution.
Results: Data were obtained from 814, 7,291, and 1,018 family members from acute hospitals, PCUs, and home hospice services, respectively. Significant associations were found between CG or MDD and all sleep condition symptoms (OR: 1.48-12.88; all p<0.0001) and between changes in alcohol intake (OR: 1.63-3.55; all p<0.0001).
Limitations: The majority were family members who had lost a loved one to cancer in a PCU, the psychological health of nonresponders was unavailable, the results were based on self-report data, and no clinical assessment interviews were done; this could limit the generalizability of the findings.
Conclusions: Overall, 14% and 17% of the respondents reported increased and decreased alcohol consumption, respectively, and 46–61% reported experiencing insomnia. Interestingly, both increase and decrease in alcohol intake after bereavement were risk factors of possible CG or MDD. These results suggest that assessing sleep conditions and alcohol consumption might help prevent severe psychological impairments in bereaved individuals.
Objective: Grief reactions in bereaved caregivers of cancer patients have been identified individually as distinct prolonged grief disorder (PGD)- and major depressive disorder (MDD)-symptom trajectories, but no research has examined whether patterns of change (trajectories) for PGD and MDD symptoms synchronize during bereavement. We conducted a secondary analysis study to investigate the construct distinctiveness of PGD and MDD by simultaneously identifying and examining similarities and differences between bereaved caregivers’ PGD- and depressive-symptom trajectories from immediately postloss through 2 years later.
Methods: PGD and depressive symptoms were measured for 849 cancer patients’ caregivers over their first 2 years of bereavement using 11 grief-symptom items of the Prolonged Grief-13 scale (P-11) and the Center for Epidemiologic Studies-Depression (CES--D) scale, respectively. PGD- and depressive-symptom trajectories were identified using latent class growth analysis with continuous latent-class indicators (total PG-11 and CES-D scores). Concordance of caregiver participants’ membership in PGD- and depressive-symptom trajectories was examined by a percentage and a kappa value.
Results: Five distinct symptom trajectories were identified for both PGD and MDD, with four shared trajectories (endurance, transient-reaction, resilience, and prolonged-symptomatic) having different prevalence rankings. Nonetheless, unique trajectories were identified for PGD (potential recurrence) and depressive symptoms (chronically distressed), respectively. Concordance between membership in PGD- and depressive-symptom trajectories was moderate (61.3%, kappa [95% CI]: 0.49 [0.44, 0.53]).
Conclusion: GD and MDD are related but distinct constructs indicated by the unique trajectories identified for each, different prevalence rankings for PGD- and depressive-symptom trajectories, and moderate concordance between membership in PGD- and depressive-symptom trajectories, respectively.
Grief is a common, instinctive, natural reaction that occurs following the loss of a loved one. This human experience is universal and will affect most people during a lifetime and cause a range of emotional and physical distress that can feel overwhelming and intolerable. In late life especially, people are exposed to an increasing number of losses and often grieve multiple losses at the same time. Death of a spouse is thought to be the most common and difficult loss in older adults, with nearly one-third of those aged 65 and older being widowed. Bereavement has been associated with a deterioration in mental health and physical health and thus clinicians need to be aware of the risk factors as well as the principles for treatment. This chapter explores grief in older adults including the impact grief has on an individual, the factors of “normal” grief and bereavement, complicated grief, mental health consequences of bereavement, and evidence-based practices for treatment.