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Excess mortality associated with the COVID-19 pandemic has led many to experience the loss of family members, with significant negative outcomes. We quantify the extent to which these population-wide rates of kin loss represent a departure from levels expected in the absence of COVID-19 excess mortality and consider which demographic groups are most likely to be affected. Results for biological kin in 31 countries indicate dramatic increases in excess kin loss associated with excess mortality and follow a generational pattern consistent with COVID-19 mortality risk by age. During periods of high excess mortality, the number of younger individuals losing a grandparent increased by up to 845 per 100,000, or 1.2 times expected levels (for individuals aged 30 to 44 y in the United Kingdom in April 2020), while the number of older individuals losing a sibling increased by up to 511 per 100,000 or 1.15 times (for individuals aged 65 y and over in Poland in November 2020). Our monthly multicountry estimates of excess kin loss complement existing point estimates of the number of individuals bereaved by COVID-19 mortality [Verdery et al., Proc. Natl. Acad. Sci. U.S.A. 117, 17695-17701 (2020); Kidman et al., JAMA Pediatr. 175, 745-746 (2021); Hillis et al., Lancet 398, 391-402 (2021)] and highlight the role of heterogeneous excess mortality in shaping country experiences.
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Luto , COVID-19 , COVID-19/epidemiologia , COVID-19/mortalidade , Humanos , Incidência , Reino Unido/epidemiologiaRESUMO
BACKGROUND: Care for those with life-limiting cancer heavily involves family caregivers who may experience significant physical and emotional burden. The purpose of this study was to test the impact of Symptom Care at Home (SCH), an automated digital family caregiver coaching intervention, during home hospice, when compared to usual hospice care (UC) on the primary outcome of overall caregiver burden. Secondary outcomes included Caregiver Burden at weeks 1 and 8, Mood and Vitality subscales, overall moderate-to-severe caregiving symptoms, and sixth month spouse/partner bereavement outcomes. METHODS: Using a randomized, multisite, nonblinded controlled trial, 332 cancer family caregivers were enrolled and analyzed (159 SCH vs. 173 UC). Caregivers were primarily White (92%), female (69%), and spouse caregivers (53%). Caregivers provided daily reports on severity levels (0-10 scale) for their anxiety, depressed mood, fatigue, disturbed sleep, and caregiving interference with normal activities. These scores combined constituted the Caregiver Burden primary outcome. Based on reported symptoms, SCH caregivers received automated, tailored coaching about improving their well-being. Reports of moderate-to-severe caregiving symptoms also triggered hospice nurse notification. Secondary outcomes of Mood and Vitality were subcomponents of the Caregiver Burden score. A combined bereavement adjustment tool captured sixth month bereavement. RESULTS: The SCH intervention reduced overall Caregiver Burden compared to UC (p < .001), with a 38% reduction at 8 weeks and a medium-to-large effect size (d = .61). SCH caregivers experienced less (p < .001) disruption in both Mood and Vitality. There were higher levels of moderate-to-severe caregiving symptoms overtime in UC (OR, 2.722). All SCH caregivers benefited regardless of caregiver: sex, caregiver relationship, age, patient diagnosis and family income. SCH spouse/partner caregivers achieved better sixth month bereavement adjustment than UC (p < .007). CONCLUSIONS: The SCH intervention significantly decreased caregiving burden over UC and supports the maintenance of family caregiver mood and vitality throughout caregiving with extended benefit into bereavement.
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Luto , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Tutoria , Neoplasias , Feminino , Humanos , Cuidadores/psicologia , Família/psicologia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Neoplasias/terapiaRESUMO
BACKGROUND: Bereaved parents experience life-long grief after the death of their child from cancer. Parents who can integrate their grief and maintain their social functioning early in bereavement, even in the setting of concurrent psychosocial distress, have improved outcomes. Identifying the factors associated with bereaved parents' early social functioning can guide future supportive interventions. METHODS: The authors surveyed parents of children who died from cancer at two large centers 6-24 months after death, assessing bereavement experiences using validated and pilot tested tools. Univariable and multivariable logistical regression models were used to examine which family and child demographic, treatment, and end-of-life (EOL) factors were associated with maintained parental social functioning (T scores ≥40 on the Patient-Reported Outcomes Measurement Information System Ability to Participate in Social Roles and Activities-Short Form questionnaire). RESULTS: One hundred twenty-eight parents of 88 children participated (38% household response rate); most parents identified as female (63%) and White (88%). Parents' median age was 47 years (interquartile range, 10 years); and the median time from the child's death to survey completion was 13 months (interquartile range, 10 months). In multivariate modeling, parents without household material hardship and those who felt prepared for EOL circumstances had increased odds of maintained social functioning (odds ratio, 4.7 [95% confidence interval, 1.6-13.7; p < .004] and 5.5 [95% confidence interval, 1.9-15.9; p < .002], respectively). CONCLUSIONS: Parents who felt prepared for their child's EOL and those without household material hardship were more likely to have maintained social functioning in the first 2 years after their child's death. Interventions targeting EOL preparedness and alleviating household material hardship may improve bereavement outcomes.
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Luto , Neoplasias , Pais , Humanos , Feminino , Masculino , Criança , Pais/psicologia , Neoplasias/psicologia , Pessoa de Meia-Idade , Adulto , Pré-Escolar , Características da Família , Adolescente , Lactente , Inquéritos e Questionários , Cuidado da Criança/psicologiaRESUMO
BACKGROUND: Under traditional Medicare, accountability measures are specific to each healthcare setting. With the growth of alternative payment models such as Medicare Advantage, the focus of accountability measures can be on the longitudinal episode of care. OBJECTIVE: Using the last month of life as the episode of care, examine bereaved family member perceptions of the quality of care by site of death and inpatient palliative/hospice care. DESIGN: Retrospective cohort study using the National Health Aging Trends Study waves 3-11. SUBJECTS: US decedents age 65 and older with family member or close friend survey response. MAIN MEASURES: Overall rating of the quality of care, perceptions of symptom management, being treated with respect, emotional/spiritual support, communication, and receipt of care that the decedent did not want. KEY RESULTS: Among 2796 interviews (weighted N = 12.6 million), 25.7% died at home with hospice, 10.9% at home without hospice, 10.0% in the ICU, 6.4% at a palliative care unit (PCU), 6.4% at a hospice IPU, 9.1% at hospital without inpatient palliative care, 13.2% at a nursing home without hospice, 9.8% in a nursing home with hospice, 4.1% at a hospice residence, and 4.4% at other locations without hospice. Dying at home with hospice received the highest rating of quality of care (60.2% stated excellent care) while the adjusted marginal differences in sites of death with inpatient palliative care services were rated lower: hospice residence 25.6% points lower (95% CI (-13.7%, -37.5%)) and a freestanding IPU was 16.9% points lower (95% CI (- 4.9%, -29.0%)). CONCLUSION: Examining the episode of care as the last month of life, hospice at home is associated with higher rating of the quality of care while inpatient palliative care services in hospital, hospice residence, or hospice IPU settings are rated lower.
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Luto , Cuidados Paliativos , Qualidade da Assistência à Saúde , Assistência Terminal , Humanos , Cuidados Paliativos/normas , Masculino , Idoso , Feminino , Estudos Retrospectivos , Idoso de 80 Anos ou mais , Assistência Terminal/normas , Pacientes Internados , Estudos de Coortes , Cuidados Paliativos na Terminalidade da Vida/normas , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Estados Unidos , Hospitalização/estatística & dados numéricosRESUMO
BACKGROUND: The COVID-19 pandemic disrupted many areas of life, including culturally accepted practices at end-of-life care, funeral rites, and access to social, community, and professional support. This survey investigated the mental health outcomes of Australians bereaved during this time to determine how these factors might have impacted bereavement outcomes. METHODS: An online survey indexing pandemic and bereavement experiences, levels of grief, depression, anxiety, and health, work, and social impairment. Latent class analysis (LCA) was used to identify groups of individuals who shared similar symptom patterns. Multinomial regressions identified pandemic-related, loss-related, and sociodemographic correlates of class membership. RESULTS: 1911 Australian adults completed the survey. The LCA identified four classes: low symptoms (46.8%), grief (17.3%), depression/anxiety (17.7%), and grief/depression/anxiety (18.2%). The latter group reported the highest levels of health, work, and social impairment. The death of a child or partner and an inability to care for the deceased due to COVID-19 public health measures were correlated with grief symptoms (with or without depression and anxiety). Preparedness for the person's death and levels of pandemic-related loneliness and social isolation differentiated all four classes. Unemployment was associated with depression/anxiety (with or without grief). CONCLUSIONS: COVID-19 had profound impacts for the way we lived and died, with effects that are likely to ricochet through society into the foreseeable future. These lessons learned must inform policymakers and healthcare professionals to improve bereavement care and ensure preparedness during and following future predicted pandemics to prevent negative impacts.
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População Australasiana , Luto , COVID-19 , Transtornos de Estresse Pós-Traumáticos , Adulto , Humanos , Austrália/epidemiologia , COVID-19/psicologia , Pesar , Análise de Classes Latentes , Saúde Mental , Pandemias , Transtornos de Estresse Pós-Traumáticos/psicologiaRESUMO
BACKGROUND: Although suicide bereavement is associated with suicide and self-harm, evidence regarding mechanisms is lacking. We investigated whether depression and substance use (alcohol and/or other drugs) explain the association between partner suicide bereavement and suicide. METHODS: Linkage of nationwide, longitudinal data from Denmark for the period 1980-2016 facilitated a comparison of 22 668 individuals exposed to bereavement by a partner's suicide with 913 402 individuals bereaved by a partner's death due to other causes. Using causal mediation models, we estimated the degree to which depression and substance use (considered separately) mediated the association between suicide bereavement and suicide. RESULTS: Suicide-bereaved partners were found to have a higher risk of suicide (HRadj = 1.59, 95% CI 1.36-1.86) and of depression (ORadj 1.16, 95% CI 1.09-1.25) when compared to other-bereaved partners, but a lower risk of substance use (ORadj 0.83; 95% CI 0.78-0.88). An increased risk of suicide was found among any bereaved individuals with a depression diagnosis recorded post-bereavement (ORadj 3.92, 95% CI 3.55-4.34). Mediation analysis revealed that depression mediated 2% (1.68%; 95% CI 0.23%-3.14%; p = 0.024) of the association between suicide bereavement and suicide in partners when using bereaved controls. CONCLUSIONS: Depression is a partial mediator of the association between suicide bereavement and suicide. Efforts to prevent and optimize the treatment of depression in suicide-bereaved people could reduce their suicide risk. Our findings might be conservative because we did not include cases of depression diagnosed in primary care. Further work is needed to understand this and other mediators.
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BACKGROUND: It is estimated that 78% of children experience the death of a close friend or family member by 16 years of age, yet longitudinal research examining the mental health outcomes of wider experiences of bereavement is scarce. We conducted a longitudinal investigation of the association between maternal experienced bereavement before the age of 11 years and offspring depressive and anxiety disorders at age 18 and examined moderation of this association by modifiable parental factors. METHODS: We analysed data from the Avon Longitudinal Study of Parents and Children, a UK-based birth cohort, including 9,088 child participants with data available on bereavement. Bereavement was measured via maternal report at eight timepoints until children were 11 years. Offspring depressive and anxiety-related disorders were self-reported at 18 years old using the Clinical Interview Schedule-Revised (CIS-R). The potential moderating roles of maternal anxiety, maternal depression, parental monitoring, positive parenting and negative parenting practices were examined. RESULTS: Maternal experienced bereavement was not associated with depression or anxiety-related disorders in early adulthood among offspring. In addition, no support was found for negative parenting practices, parental monitoring or maternal anxiety and depression as moderators of the relationship between maternal experienced bereavement and offspring mental health problems at 18 years old. Findings in relation to the moderating role of positive parenting practices were inconsistent. CONCLUSIONS: Findings suggest that a large number of children are exposed to maternal experienced bereavement. We found no evidence that maternal experienced bereavement during childhood increases the risk for offspring psychiatric disorders in early adulthood. Several methodological considerations prudent to bereavement research are discussed.
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OBJECTIVES: Insufficient preparedness for bereavement can affect a family's psychological health status after bereavement. However, factors associated with preparedness remain unclear. This study aimed to identify factors associated with preparedness for bereavement in families of patients with cancer. METHODS: We conducted a secondary analysis of a nationwide bereaved family survey in Japan, analyzing data from 9123 family members of patients with cancer. Logistic regression analysis was conducted to explore how sociodemographic factors, health status, and perceived care for patients and families were associated with preparedness for bereavement. RESULTS: Of the 9123 families, 1338 (15.1%) were not prepared for bereavement. Factors associated with insufficient preparedness for bereavement (all p < 0.001) were found as follows: patients' spouses (OR = 2.54), receiving care in acute hospitals (OR = 1.83), worse psychological health status during caregiving (OR = 2.13), lower social support for family members (OR = 1.90), wrong patients' awareness of medical condition from family's perspective (OR = 1.75-2.12), family preference of more aggressive treatment rather than palliative care (OR = 1.71) or not sure (OR = 2.31), not wanting to know information about the patient's prognosis (OR = 1.64-1.77), end-of-life discussion with physician 1 month before patient's death (OR = 1.45), and late or early end-of-life discussions with physician and family (OR = 1.78-1.95). CONCLUSIONS: This study's results might assist clinicians in assessing and identifying families who are not prepared for bereavement; however, preparedness for bereavement may have been associated with other factors.
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Luto , Neoplasias , Assistência Terminal , Humanos , Pesar , Cuidados Paliativos , Neoplasias/terapia , Neoplasias/psicologia , MorteRESUMO
OBJECTIVE: To identify 1) complicated grief symptom clusters among acutely-bereaved older adults who have lost a spouse to COVID-19 and 2) if spousal death due to COVID-19 increased risk of developing probable PGD METHODS: Eighty adults participating in a randomized controlled trial for depression prevention (mean age [± SD] = 70.4 [6.6]) completed the Inventory of Complicated Grief, every 3 months over a maximum of 15 months. Twenty-four percent (n = 19) of participants lost a spouse to COVID-19; 76% (n = 61) lost a spouse to other causes of death. Adjusted linear regression examined the associations between COVID-19 bereavement and six symptom clusters: yearning and preoccupation, anger and bitterness, shock and disbelief, estrangement from others, hallucinations, and behavior change. RESULTS: Compared to the non-COVID-19 group, the COVID-19 bereaved group reported greater shock and disbelief, hallucinations of the deceased, and estrangement from others. COVID-19 death was also associated with higher risk for probable prolonged grief disorder (PGD) at 12 months (odds ratio = 4.38, p = 0.027). CONCLUSIONS: Older adults who have lost a spouse to COVID-19 present with specific symptoms of distress and may eventually require clinical care for PGD.
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Luto , COVID-19 , Humanos , Idoso , Transtorno do Luto Prolongado , Síndrome , Pesar , AlucinaçõesRESUMO
Functional seizures (FS) are a symptom of Functional Neurological Disorder (FND), the second most common neurological diagnosis made worldwide. Childhood trauma is associated with the development of FS, but more research is needed to truly understand the effects of trauma on FS onset. A sample of 256 responses by adults with FS to the Childhood Traumatic Events Scale were analyzed using a Cox proportional hazard model. When investigating each unique childhood traumatic exposure and its associated self-reported severity together, experiencing death of a loved one and experiencing violence were significantly associated with FS onset, suggesting reduced time from trauma exposure to first FS. Death of a loved one in childhood is often overlooked as an influential risk factor for future development of serious mental illnesses such as FS. In this study we show death of a loved one in childhood should be considered as an influential traumatic experience and recommend FND researchers examine its prevalence in patient histories and the potential effects on attachment-related processes and clinical treatment formulations. We recommend future studies incorporate loss of a loved one during childhood (before age 18) in both quantitative and qualitative assessments of persons with FND.
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Convulsões , Humanos , Masculino , Feminino , Adulto , Fatores de Risco , Convulsões/psicologia , Pessoa de Meia-Idade , Morte , Adulto Jovem , Modelos de Riscos Proporcionais , Família/psicologia , IdosoRESUMO
OBJECTIVE: To assess the degree of openness of communication about illness and death between patients with advanced cancer and their relatives during the last three months of the patient's life, and its association with relatives' characteristics and bereavement distress. METHODS: We used data from bereaved relatives of patients with advanced cancer from the prospective, longitudinal, multicenter, observational eQuipe study. Univariate and multivariable linear regression analyses were used to assess the association between the degree of openness of communication (measured using the validated Caregivers' Communication with patients about Illness and Death scale), the a priori defined characteristics of the relatives, and the degree of bereavement distress (measured using the Impact of Event Scale). RESULTS: A total of 160 bereaved relatives were included in the analysis. The average degree of open communication about illness and death between patients with advanced cancer and their relatives was 3.86 on a scale of 1 to 5 (SE=0.08). A higher degree of open communication was associated with a lower degree of bereavement distress (p=0.003). No associations were found between the degree of open communication and the relatives' age (p=0.745), gender (p=0.196), level of education (p>0.773), (religious) worldview (p=0.435), type of relationship with the patient (p>0.548), or level of emotional functioning before the patient's death (p=0.075). CONCLUSIONS: Open communication about illness and death between patients and relatives seems to be important, as it is associated with a lower degree of bereavement distress. Healthcare professionals can play an important role in encouraging the dialogue. However, it is important to keep in mind that some people not feel comfortable talking about illness and death.
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Luto , Neoplasias , Humanos , Estudos Prospectivos , Pesar , ComunicaçãoRESUMO
OBJECTIVES: We investigated whether the self-system belief of fear of abandonment mediated the effects of intervention-induced change in 2 protective factors-positive parenting and adaptive coping-and one risk factor-stressful events-on youth mental health problems and maladaptive grief. This study extends prior research on fear of abandonment in youth who experience parental death by examining pathways through which a program reduced fear of abandonment and, in turn, affected subsequent pathways to child mental health problems in the context of a randomized experiment. METHODS: This is a secondary data analysis study. We used data from the 4-wave longitudinal 2-arm parallel randomized controlled trial of the Family Bereavement Program conducted between 1996 and 1999 in a large city in the Southwestern United States. The sample consisted of 244 offspring between 8 and 16 at the pretest. They were assessed again at posttest, 11-month follow-up, and 6-year follow-up. Offspring, caregivers, and teachers provided data. RESULTS: Mediation analyses indicated that intervention-induced reductions in stressful events were prospectively associated with a lower fear of abandonment. For girls, fear of abandonment was related to self-reported maladaptive grief and teacher-reported internalizing problems 6 years later. CONCLUSIONS: This study extends prior research on the relation between intervention-induced changes in risk and protective factors and improvements in outcomes of bereaved youth. The findings support the reduction of stressful events as a key proximal target of prevention programs for bereaved children.
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Luto , Saúde Mental , Criança , Feminino , Humanos , Adolescente , Pesar , Poder Familiar/psicologia , MedoRESUMO
OBJECTIVE: Parents of children who died of a medical condition experience a range of psychosocial outcomes. The current scoping review aims to summarize the outcomes assessed, methodology, and sample characteristics of recent psychosocial research conducted with this population. METHODS: Included studies were limited to peer-reviewed, psychosocial outcomes research published between August 2011 and August 2022, written in English, and including caregiver study participants of children who died of a medical condition. Data sources were scholarly journal articles from 9 electronic databases, including Scopus, Web of Science, Academic Search Primer, ProQuest Research Library, PubMed, Embase, PsycINFO, Psychology & Behavioral Sciences Collection, and Health Source: Nursing/Academic Edition. The Mixed Methods Appraisal Tool-2018 evaluated methodological quality. RESULTS: The study sample included 106 studies, most of which were either qualitative (60%) or quantitative (29%). Mixed-methods studies (8%) and randomized clinical trials (2%) were also identified. Study quality was variable, but most studies met all quality criteria (73%). Studies primarily represented cancer populations (58%), White participants (71%), and mothers (66%). Risk-based psychosocial outcomes (e.g., grief) were more commonly assessed than resilience-based outcomes. CONCLUSIONS: The current scoping review revealed that recent research assessing the psychosocial outcomes of bereaved parents is limited in the representation of diverse populations, primarily qualitative, of broadly strong methodological quality, and oriented to psychosocial risk. To enhance the state of the science and inform evidence-based psychosocial services, future research should consider varied methodologies to comprehensively assess processes of risk and resilience with demographically and medically diverse populations.
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Neoplasias , Resiliência Psicológica , Feminino , Humanos , Criança , Pais/psicologia , Neoplasias/psicologia , Cuidadores/psicologia , MãesRESUMO
BACKGROUND: According to recent research, the Internet and social media are shaping and changing how we die and mourn. However, the use of social media after bereavement by suicide remains poorly understood. Thus, emerging research is needed to better assess the role that social media can play after bereavement by suicide. The objective of our study was to evaluate the use of social media in French people bereaved by suicide and to assess their expectations toward social media. METHOD: We conducted a national cross-sectional online survey including French people bereaved by suicide assessing their use of social media after the death of their relative. All adults bereaved by suicide were eligible to participate in the study. An online 26-item questionnaire collected sociodemographic and loss-related characteristics and evaluated four dimensions: (1) the use of social media in daily life, (2) the perceived needs regarding suicide bereavement, (3) the use of social media associated with the suicide loss, and (4) the expectations regarding the development of an online resource for people bereaved by suicide and proposals regarding the development of such a resource. RESULTS: Among 401 participants, 61.6% reported using social media after the death of their relative by suicide, especially those recently bereaved, those receiving counseling and bereaved parents. The participants mainly used social media to reach peers bereaved by suicide and to memorialize, while they expected social media to help them finding information on suicide and accessing bereaved peers. Younger participants were more prone to use social media to memorialize, while bereaved partners and those bereaved by the suicide of a parent were less prone to use them with such aim. DISCUSSION: A large part of people bereaved by suicide use social media for their grief process, mainly to contact peers bereaved by suicide and to memorialize their loved one. According to or results, social media contributes to contemporary grief processes after suicide bereavement and can be seen as putative means to improve the well-being of people bereaved by suicide.
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Luto , Mídias Sociais , Suicídio , Humanos , Masculino , Feminino , Adulto , França , Suicídio/psicologia , Estudos Transversais , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem , Idoso , Adolescente , InternetRESUMO
BACKGROUND: A lack of confidence in perinatal bereavement care (PBC) and the psychological trauma experienced by nurses and midwives during bereavement care leads to their strong need for sufficient organisational support. The current study intended to test a hypothesised model of the specific impact paths among organisational support, confidence in PBC, secondary traumatic stress, and emotional exhaustion among nurses and midwives. METHODS: A descriptive, cross-sectional survey was conducted in sixteen maternity hospitals in Zhejiang Province, China, from August to October 2021. The sample (n = 779) consisted of obstetric nurses and midwives. A path analysis was used to test the relationships among study variables and assess model fit. RESULTS: Organisational support directly and positively predicted confidence in PBC and demonstrated a direct, negative, and significant association with secondary traumatic stress and emotional exhaustion. Confidence in PBC had a positive direct effect on secondary traumatic stress and a positive indirect effect on emotional exhaustion via secondary traumatic stress. Secondary traumatic stress exhibited a significant, direct effect on emotional exhaustion. CONCLUSIONS: This study shows that nurses' and midwives' confidence in PBC and mental health were leadingly influenced by organisational support in perinatal bereavement practice. It is worth noting that higher confidence in PBC may lead to more serious psychological trauma symptoms in nurses and midwives. Secondary traumatic stress plays an essential role in contributing to emotional exhaustion. The findings suggest that support from organisations and self-care interventions were required to improve confidence in PBC and reduce negative psychological outcomes among those providing PBC. The development of objective measures for assessing competence in PBC and organizational support are essential.
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Luto , Esgotamento Profissional , Fadiga de Compaixão , Cuidados Paliativos na Terminalidade da Vida , Tocologia , Humanos , Feminino , Gravidez , Exaustão Emocional , Estudos Transversais , China , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Experiencing the illness and death of a child is a traumatic experience for the parents and the child's siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate age-appropriate support for siblings. AIM: We aimed to synthesize the empirical literature regarding grief interventions that target the whole family before and/or after the death of a child. DESIGN: A scoping review following the Joanna Briggs Institute and Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines. DATA SOURCES: We searched PubMed, PsycINFO, Embase, CINAHL, and Scopus covering January 1998-May 2022. We included studies describing any type of structured intervention targeting the whole family (i.e. parents and siblings) before or/and after the death of a child (below 18 years), with pre-post assessments of grief-related symptoms in the family as an outcome. RESULTS: After removal of duplicates, we screened the titles and abstracts of 4078 publications and identified 30 publications for full-text screening. None of the studies met the inclusion criteria. Most of the studies were excluded because they either did not target the whole family or did not target families who had lost a child below 18 years. Bereavement camps were a popular form of family intervention, but none were evaluated in a pre-post design. No grief interventions offering support pre-death were found. CONCLUSIONS: There is great need for research to improve bereavement outcomes for the entire family and to potentially integrate this in pediatric palliative care.
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Pesar , Humanos , Criança , Feminino , Masculino , Adolescente , Adulto , Família/psicologia , Pré-Escolar , Pais/psicologiaRESUMO
BACKGROUND: Variation in the provision of care and outcomes in the last months of life by cancer and non-cancer conditions is poorly understood. AIMS: (1) To describe patient conditions, symptom burden, practical problems, service use and dissatisfaction with end-of-life care for older adults based on the cause of death. (2) To explore factors related to these variables focussing on the causes of death. DESIGN: Secondary analysis of pooled data using cross-sectional mortality follow-back surveys from three studies: QUALYCARE; OPTCare Elderly; and International Access, Right, and Empowerment 1. SETTING/PARTICIPANTS: Data reported by bereaved relatives of people aged ⩾75 years who died of cancer, cardiovascular disease, respiratory disease, dementia or neurological disease. RESULTS: The pooled dataset contained 885 responses. Overall, service use and circumstances surrounding death differed significantly across causes of death. Bereaved relatives reported symptom severity from moderate to overwhelming in over 30% of cases for all causes of death. Across all causes of death, 28%-38% of bereaved relatives reported some level of dissatisfaction with care. Patients with cardiovascular disease and dementia experienced lower symptom burden and dissatisfaction than those with cancer. The absence of a reliable key health professional was consistently associated with higher symptom burden (p = 0.002), practical problems (p = 0.001) and dissatisfaction with care (p = 0.001). CONCLUSIONS: We showed different trajectories towards death depending on cause. Improving symptom burden and satisfaction in patients at the end-of-life is challenging, and the presence of a reliable key health professional may be helpful.
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Doenças Cardiovasculares , Demência , Neoplasias , Assistência Terminal , Humanos , Masculino , Feminino , Idoso , Neoplasias/mortalidade , Neoplasias/psicologia , Demência/mortalidade , Demência/psicologia , Idoso de 80 Anos ou mais , Doenças Cardiovasculares/mortalidade , Estudos Transversais , Doenças do Sistema Nervoso/mortalidade , Doenças Respiratórias/mortalidade , Causas de Morte , Satisfação do Paciente , Inquéritos e Questionários , Cuidados Paliativos , Efeitos Psicossociais da Doença , Carga de SintomasRESUMO
BACKGROUND: Severe grief is highly distressing and prevalent up to 1 year post-death among people bereaved during the first wave of COVID-19, but no study has assessed changes in grief severity beyond this timeframe. AIM: Understand the trajectory of grief during the pandemic by reassessing grief symptoms in our original cohort 12-18 months post-death. DESIGN: Prospective matched cohort study. SETTINGS/PARTICIPANTS: Family members of decedents who died in an acute care hospital between November 1, 2019 and August 31, 2020 in Ottawa, Canada. Family members of patients who died of COVID (COVID +ve) were matched 2:1 with those who died of non-COVID illness (COVID -ve) during pandemic wave 1 or immediately prior to its onset (pre-COVID). Grief was assessed using the Inventory of Complicated Grief (ICG). RESULTS: Follow-up assessment was completed by 92% (111/121) of family members in the initial cohort. Mean ICG score on the 12-18-month assessment was 19.9 (SD = 11.8), and severe grief (ICG > 25) was present in 28.8% of participants. One-third (33.3%) had either a persistently high (>25) or worsening ICG score (⩾4-point increase between assessments). Using a modified Poisson regression analysis, persistently high or worsening ICG scores were associated with endotracheal intubation in the deceased, but not cause of death (COVID +ve, COVID -ve, pre-COVID) or physical presence of the family member in the final 48 h of life. CONCLUSIONS: Severe grief is a substantial source of psychological morbidity in the wake of the COVID-19 pandemic, persisting more than a year post-death. Our findings highlight an acute need for effective and scalable means of addressing severe grief.
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Luto , COVID-19 , Humanos , Estudos de Coortes , Estudos Prospectivos , Pandemias , Inquéritos e Questionários , Pesar , Família/psicologia , HospitaisRESUMO
Prolonged grief disorder (PGD) is associated with impairments in cognitive functioning, but the neuropsychological correlates of early grief in older adults are poorly understood. This preliminary study cross-sectionally examined neuropsychological functioning in bereaved adults with high and low grief symptoms and a non-bereaved comparison sample and further explored the relationship between multidomain cognitive measures and grief severity. A total of ninety-three nondemented older adults (high grief: n = 44; low grief: n = 49) within 12 months post-bereavement and non-bereaved comparison participants (n = 43) completed neuropsychological battery including global and multiple domain-specific cognitive functioning. Linear regression models were used to analyze differences in multidomain cognitive measures between the groups and specifically examine the associations between cognitive performance and grief severity in the bereaved, after covariate adjustment, including depressive symptoms. Bereaved older adults with higher grief symptoms performed worse than those with lower symptoms and non-bereaved participants on executive functioning and attention and processing speed measures. In the bereaved, poorer executive functioning, attention and processing speed correlated with higher grief severity. Attention/processing speed-grief severity correlation was seen in those with time since loss ≤ 6 months, but not > 6 months. Intense early grief is characterised by poorer executive functioning, attention, and processing speed, resembling findings in PGD. The putative role of poorer cognitive functioning during early grief on the transition to integrated grief or the development of PGD remains to be elucidated.
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BACKGROUND: Suicide bereavement entails profound social stressors, including stigma and communication barriers, which can impair social support for suicide loss survivors (SLS). Despite recognized benefits of empathetic interactions, social support, and self-disclosure in mitigating adverse mental health outcomes after suicide loss, we lack a comprehensive understanding of the factors influencing perceived social support among SLS within their broader social environments. To address this gap, our study explores the diverse social experiences of SLS beyond their immediate circles. Specifically, we identify characteristics that define both supportive and non-supportive social experiences of SLS, as well as the facilitators and barriers to social support in the context of suicide bereavement. METHODS: In 2022, we conducted structured online individual interviews with a diverse sample of 18 SLS in Germany. We analyzed these interviews using qualitative content analysis. RESULTS: We examined the social experiences of SLS across three phases and social contexts: (1) the immediate aftermath of the loss; (2) during bereavement practices; and (3) over time. Our findings show that proactive responses and personalized mourning rituals significantly enhance SLS' sense of community support, while encounters characterized by avoidance or intrusive curiosity lead to feelings of isolation. Over time, supportive interactions often emerge from peers with similar experiences, promoting openness and shared vulnerability. Conversely, superficial engagement, along with experiences of others depersonalizing and avoiding conversations about the loss, contribute to a sense of marginalization. CONCLUSIONS: Our findings highlight the importance of proactive engagement and open dialogue, calling for societal and communicative shifts toward inclusive and compassionate approaches in addressing suicide loss. This study underscores the need for comprehensive strategies that enhance both suicide and grief literacy and address the taboo and stigma surrounding suicide, ultimately fostering supportive social environments for SLS.