Background: Despite technological innovations and continuous improvement in evidence-based treatments, mortality in the intensive care unit (ICU) remains high. Consequently, a large group of family members may be in need of, and could benefit from, bereavement follow-up support.
Aims and Objectives: To explore the elements, organization, and evaluation of ICU bereavement services in European countries. Specific objectives were to investigate: (a) the model of bereavement follow-up services (elements of support), (b) the workforce model (organization of staff), and (c) the evaluation model (evaluation strategies).
Design: This was a cross-sectional survey of conference delegates.
Methods: A paper-and-pen questionnaire, including a cover letter assuring the respondents of anonymity and confidentiality, was distributed to 250 delegates during the opening ceremony of the 2017 European federation of Critical Care Nurses associations Congress in Belfast. The questionnaire was developed from a previously validated tool describing bereavement care practices in ICUs, including questions about the content and organization of bereavement follow-up services. Frequencies were calculated using yes/no questions, and content analysis was applied in additional free-text comments.
Results: We received 85 responses from publicly employed nurses, mainly in mixed adult ICUs. Respondents were 48 (56.5%) bedside nurses, and the remaining respondents represented clinical nurse specialists, researchers, managers, or academic nurses. Bereavement follow up had existed for about 1 to 15 years. Important follow-up elements were: viewing the deceased in the unit, 77 (90.6%); providing follow-up information, 67 (79.8%); sending a letter of sympathy, 17 (20%); and calling the family to arrange a meeting, 27 (31%).
Conclusions: Bereavement follow up is common but variable in European ICUs. We recommend the development, implementation, and evaluation of evidence-based, but culture-specific, bereavement follow-up guidelines for European ICUs.
Relevance to clinical practice: More critical care nurses are realizing the need for bereavement follow-up guidelines. This paper provides an overview of common elements that might be considered.
Perinatal loss, including fetal and infant death, is a devastating experience for parents, resulting in long-term adverse physical and psychosocial outcomes. However, little is known about what services might best support grieving parents. We aimed to understand the role of professional bereavement photography in assisting the grieving process of parents who have lost a fetus or infant, by examining the perspectives of bereaved parents, professional photographers, and health care professionals. Twenty semistructured interviews were conducted, and interview transcripts were analyzed using modified grounded theory. Twenty-three individuals participated, including 6 bereaved parents, 8 photographers, and 9 health care professionals. Analyses generated 5 major themes describing ways in which the photographs were valuable to parents: validation of the experience, permission to share, creation of a permanent and tangible legacy, creation of positive memories, and moving forward after the loss. Hospitals should consider incorporation of professional bereavement photography services into palliative care and bereavement programs.
Background: The death of a child can have significant emotional effects on doctors responsible for their care. Trainee doctors working in the paediatric intensive care unit (PICU) may be particularly vulnerable. The aim of this study was to examine the emotional impact of, and grief reactions to, a child's death in PICU trainee doctors, along with coping strategies they used.
Methods: In a prospective, cross-sectional, observational study, qualitative and quantitative data were recorded on anonymised, written questionnaires. Grief severity was assessed using the Texas Revised Inventory of Grief. Emotional impact was assessed using the shortened Impact of Event Scale. The BriefCOPE tool was used to assess coping strategies. Qualitative data was analysed using conventional content analysis. Data are presented as median (inter-quartile range) or number (%).
Results: All invited trainee doctors (23 anaesthetists; 5 paediatricians) completed the questionnaire (age, 30 [29-34] yr; 13/28 [46%] female). Two (7%) doctors experienced severe grief (Texas Revised Inventory of Grief score <39), with five (18%) doctors severely affected by the deaths as measured by the Impact of Event Scale. Qualitative analysis revealed prominent themes of sadness, helplessness, guilt, shock, and concern for the bereaved family. There was limited use of coping strategies. Speaking with another trainee doctor was the principal coping strategy. Requests for debriefing sessions, greater psychological support and follow-up with the patient's family were frequently suggested.
Conclusions: Paediatric deaths evoke significant grief and emotional reactions in a subset of PICU trainee doctors. Trainee PICU doctors highlighted a lack of professional support and tailored debriefs.
Termination of pregnancy after diagnosis of fetal anomaly (TOPFA) is a contested issue and stigma may negatively impact affected women's psychological reactions. This study examined the influence of perceived and internalized stigma on women's long-term adjustment to a TOPFA. One hundred forty-eight women whose TOPFA dated back 1 to 7 years responded to self-report questionnaires. The associations between perceived stigma at the time of the TOPFA, current internalized stigma and symptoms of grief, trauma and depression were modeled using multiple linear regression. The proportion of participants reporting scores above the cutoffs on the respective scale was 17.6% for grief, 18.9% for posttraumatic stress, and 10.8% for depression. After controlling for time since the TOPFA, pre-TOPFA mental health and obstetric variables, higher levels of current internalized stigma were related to higher levels of grief, trauma, and depression. Mediation analyses suggested that the effect of perceived stigma at the time of the TOPFA on symptoms of grief and trauma was mediated by current internalized stigma, but the cross-sectional design limited causal interpretation of results. Internalized stigma is associated with long-term psychological distress following a TOPFA. Perceived stigma at the time of the TOPFA may contribute to increased trauma and grief symptomatology, but results need to be validated in longitudinal studies. Health care providers and public initiatives should aim at reducing stigma among affected women.
This article explores the relationship between grief and best friendship (BF) dynamics among adolescent girls. Based on a qualitative interview study with 10 Danish girls, findings suggest that bereavement affects friendship dynamics in ways that challenge the by-standing friend in succeeding with being and staying supportive. Through a thematic analysis, we identify 12 themes that cut across the case stories, all of which testify to the difficulties bereavement represent to friendship quality and maintenance. Among other issues, it seems like grief is contagious and the bereaved friend changes her way of responding to the by-standing friend in ways that disturb expectations, values, and virtues of BF among girls in adolescence. The general categories found to be characteristic for long-term BFs, that is, positivity, supportiveness, openness, and interaction are all affected by bereavement in adolescent BFs among girls.
Background: Critical care consensus groups recommend providing bereavement support; however, little is known about what cardiac intensive care patients' families would find useful and beneficial in their grieving process.
Aim and objectives: To describe cardiac intensive care unit (ICU) patients' families' opinions on six common components of a bereavement programme.
Design: Qualitative, exploratory and descriptive.
Methods: Families were recruited from a cardiac ICU 13-15 months after their loved one's death. Families were interviewed using a semi-structured questionnaire. The research team analysed interview transcripts to assess and categorize families' opinions on six bereavement components.
RESULTS: Twelve family members were interviewed. Most were female (n = 8, 67%), spouses (n = 10, 83%) and white (n = 10, 83%), with a mean age (SD) of 58.4 years (16.7). Families' overall opinions of the bereavement brochure were positive, stating it was helpful in providing information about the grieving process. Families described the sympathy card as "meaningful" and "touching," although they rated it neutral in providing comfort. Most participants felt that a follow-up telephone call was unnecessary except to answer lingering questions they had. Many participants favoured the unit offering counselling services because they found therapy helpful in their grieving process. Participants had mixed feelings about a memory box; they believed it was an individual preference and should be handled in a sensitive manner. Most would not have attended a memorial service if offered because of traffic, distance, concerns about stressful feelings on returning to the hospital or because they already honoured their loved ones through a personalized memorial service.
Conclusions: Participants varied in their opinions about what bereavement services may be useful; however, this study provides insight about services that cardiac critical care units may consider when adding bereavement support.
Relevance to clinical practice: Family perspectives about bereavement needs can help structure services offered by critical care units.
This work presents a historical analysis of death announcements (N = 1,443) posted in the New York Times between 1912 and 2002. Announcements were coded according to two main categories: the genre of the announcement and the presence of emotion words. Four distinct main genres emerged: death notices, memorials, recognition postings by organizations, and recognition postings by nonorganizational parties (friends and family). The proportion of death notices declined steadily from 1912 to 2002, while the proportion of announcements paying tribute to the deceased increased. The announcements were also analyzed in terms of emotion words used, and it is argued that the increasing frequency of emotion words used in the death announcements reflects a progressive emotionalization and psychologization of grief and loss.
This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and recovery for the child. After the diagnosis, parents experienced intense loss (LO), but focused upon restoration-orientated tasks (RO) to support their child. Over time, most parents employed a healthy oscillation between LO coping and RO coping, with waves of grief and with some grieving suppressed. There are some specific grief and coping and gender patterns employed by parents.
Studies have found that sibling loss is associated with an increased risk of death from external causes (i.e. suicides, accidents and homicides). Increased psychiatric health problems following bereavement could underlie such an association. We studied the influence of sibling loss during childhood on psychiatric care in young adulthood, adjusting for psychosocial covariates shared by siblings in childhood. A national cohort born in Sweden in 1973-1982 (N = 701,270) was followed prospectively until 2013. Cox proportional hazards models were used to analyse the association between sibling loss during childhood and psychiatric inpatient and outpatient care identified by the Hospital Discharge Register. After adjustment for confounders, the HRs of psychiatric care in men who experienced sibling loss were 1.17 (95% CI 1.07-1.27) while the associations turned non-significant in women after adjustment for family-related psychosocial covariates, HR 1.07 (95% CI 0.99-1.16). An increased risk was found in men bereaved in early childhood (1.22 95% CI 1.07-1.38) and adolescence (1.27 95% CI 1.08-1.48). Among women, loss of a sibling during adolescence was significantly associated with psychiatric care (1.19 95% CI 1.03-1.36). Increased psychiatric health problems following bereavement could underlie the previously found association between sibling loss and mortality from external causes. Family-related psychosocial conditions shared by siblings in childhood may account for the association between sibling death and psychiatric care in adulthood.
BACKGROUND: While several internet interventions target severe prolonged grief symptoms after bereavement, no randomised controlled trial investigated interventions for prolonged grief after separation/divorce.
METHODS: This randomised controlled trial aimed to evaluate the efficacy of a guided internet-based self-help intervention for prolonged grief symptoms after spousal bereavement or separation/divorce compared to a wait-list control group. Furthermore, we analysed whether the intervention was also efficacious for participants with milder grief symptoms.
RESULTS: A total of 110 participants were mainly recruited by newspaper articles. Average age was 51 years, 77% were separated/divorced, 79% were female. Dropout rate was 11%. Compared to the control group, the intervention resulted in significant reductions in grief (d = 0.81), depression (d = 0.59), psychopathological distress (d = 0.39) (primary outcomes), embitterment (d = 0.37), loneliness (d = 0.37) and an increase in life satisfaction (d = -0.41) (secondary outcomes). These gains were maintained over three months. Improvements were similar among widowed and separated/divorced participants as well as among participants with low, medium or high levels of grief at baseline.
LIMITATIONS: Limitations include the self-selective sample and a rather small number of widowed participants.
CONCLUSIONS: Findings indicate that an internet intervention based on models for coping with grief after bereavement was not only beneficial for widowed but also separated or divorced participants. Furthermore, also participants with lower levels of grief at baseline benefitted from the intervention. This corroborates that indicated prevention efforts for grief are efficacious.
Objective : To summarize and synthesize extant literature on memory making in bereavement care for parents who experience the death of a newborn and to identify opportunities for future research.
Data Sources : We conducted a systematic search of four health-related databases (MEDLINE Complete, CINAHL Complete, Embase, and PsychINFO) for original research in January 2019. We then conducted a manual search of the reference lists of all included articles and a citation search via Scopus.
Study Selection : Selection criteria initially included all original research articles available in English that related to parents’ perceptions of perinatal or neonatal palliative care or bereavement care for parents after the death of a newborn. These criteria were refined as we developed familiarity with the available literature. Our initial screening of article titles and abstracts yielded 287 articles for full-text review. After full-text analysis, we included all 25 qualitative or mixed method research articles that met selection criteria.
Data Extraction : We used a spreadsheet modeled on the Joanna Briggs Institute Review Guidelines (2015) for data extraction.
Data Synthesis : Available research was focused primarily on parents’ perceptions of care during and after the death of their newborns. Memory making interventions emerged as significant elements of the experiences of bereaved parent. Several researchers examined parents’ perceptions of specific memory making interventions, such as bereavement photography. Contact with the newborn, opportunities for caregiving, bereavement photography, and the collection or creation of mementos emerged as important elements of memory making. Parents also identified a need for guidance about each of these key strategies for memory making.
Conclusion : We identified few studies focused entirely on memory making as an intervention in the context of bereavement care for parents. However, memory making emerged as a recurring theme throughout qualitative and mixed method studies on parents’ perceptions of perinatal or neonatal end-of-life care. Further research is required to provide evidence to guide memory making interventions for bereaved parents who experience the death of a newborn.
OBJECTIVE: The clinical and nosological significance of grief reactions in youth exposed to a shared trauma (9/11) was tested by examining whether the (1) predictors (i.e., non-loss related trauma vs. traumatic bereavement), (2) clinical correlates, (3) factorial structure, and (4) phenomenology of grief reactions are distinct from those of major depressive disorder (MDD) and 9/11-related posttraumatic stress disorder (PTSD).
METHOD: In a representative sample of New York City schoolchildren (N=8,236; grades 4-12; n=1,696 bereaved), assessed six months post-9/11, multivariate regressions examined (1) predictors of grief, PTSD, and MDD, and (2) the incremental validity of grief in predicting health problems and functional impairment; factor analysis and latent class analysis determined, respectively, (3) the factorial and (4) syndromic distinctiveness of grief, PTSD, and MDD.
RESULTS: Four types of evidence supporting the distinctiveness of grief emerged. (1) Bereavement was associated with grief independently of PTSD and MDD, but not with PTSD and MDD after adjusting for grief; conversely, non-loss related trauma was associated primarily with PTSD. (2) Grief contributed uniquely to functional impairment. (3) Grief reactions loaded on a separate factor. (4) Youth with elevated grief reactions fell into two classes characterized by only moderate and negligible probability of co-occurring PTSD and MDD symptoms, respectively.
CONCLUSION: A multi-faceted approach provided convergent evidence that grief reactions are independent of other common types of post-disaster child and adolescent psychopathology, and capture a unique aspect of bereavement-related distress. These findings suggest that grief reactions in traumatically bereaved youth merit separate clinical attention, informing tailored interventions.
Research on grief is moving away from stage and task-oriented models. Instead, loss is reconceptualized as an event that will change mourners' identity over time. The authors envision dynamic grief work as flowing from a dialogical engagement with loss, death, and illness; a terrain in which to begin a conversation with soul. A soul perspective challenges the prevailing call for efficiency, engages the voice of loss, and aims to bring value to the experience more than resolution. The process of rebecoming following bereavement is assisted by creating image-rich narratives that attend to and allow grief to express itself.
Continuing a bond after a loved one's death is considered typical and healthy. However, such a bond can continue symbolically only if it existed in the first place. What of indirect grievers, those who never knew the decedent? The authors describe bonds between individuals who did not have a living relationship to begin with, a concept referred to as imagined bonds. Forty-nine adults, who had a sibling die that they never knew, were interviewed. This article describes the bonds constructed between participants and the sibling they never knew. The authors compare and contrast the concepts of continuing bonds versus imagined bonds.
Previous research has shown that bereavement following the loss of a loved one can often produce a variety of physical and psychological effects for the individuals left behind. Specifically, the suddenness and violence of a death may be particularly important determinants of subsequent negative psychological functioning. The purpose of this study was to gain a better understanding of the grief experiences of individuals bereaved by different causes of death, specifically focusing on the suddenness of the death. Adult participants completed an online survey including demographic questions and psychological measures. The results suggest that individuals who lost someone to a sudden death reported more negative outcomes and impairment than individuals who lost someone to a more expected death. These results suggest that the cause and circumstances surrounding the death may play an important role in an individual’s grief and bereavement experiences.
Purpose: Caregivers of persons with dementia (PWD) can experience loss and grief long before the death of the person. Although such experience of caregiver grief is measurable, available scales (such as the Marwit-Meuser Caregiver Grief Inventory, MM-CGI) are lengthy and have overlaps with other caregiving constructs. We developed a briefer scale that captures the essence of caregiver grief-with comparable psychometric properties and total score to MM-CGI, as well as less overlap with other caregiving constructs.
Design and Methods: Family caregivers of community-dwelling PWD (N = 394) completed questionnaires containing MM-CGI and other caregiving scales. Initially, we split the study samples into two -the derivation sample (n = 179) was used to develop a brief scale that best predicts MM-CGI (using the best-subset approach with tenfold cross-validation), whereas the validation sample (n = 215) verified its actual performance in predicting MM-CGI. Thereafter, we evaluated the derived scale in its reliability and validity, and mapped its scores to MM-CGI using the equipercentile equating method.
Results: We derived a 6-item scale, which explained 84.1% of the variability in MM-CGI and had area under the receiver operating characteristic curve of .96 in discriminating high caregiver grief (95% CI: .94-.99). It had single dimension in confirmatory factor analysis (comparative fit index = .98; Tucker-Lewis index = .97) and maintained good psychometric properties similar to those of MM-CGI, while showing lower correlation with caregiver burden and depression. It also had scores that could be mapped to MM-CGI with reasonable precision.
Implications: We developed the first brief scale with less than 10 items that can conveniently and accurately measure caregiver grief, which opens the way for grief-related interventions in clinical care. Notably, this 6-item scale was developed using rigorous methods and demonstrated consistent evidence of capturing the essence of caregiver grief.
An avoidant grief style is marked by repeated and often unsuccessful attempts to prevent thinking about loss. Prior work shows avoidant grief involves monitoring the external environment in order to avoid reminders of the loss. Here we sought to determine whether avoidant grievers also monitor the internal environment in attempts to minimize conscious awareness of loss-related thoughts. Individuals bereaved of a first-degree relative, spouse or partner within the last 14 months participated in an fMRI study (N=29). We first applied machine learning to train neural patterns for attentional control and representation of the deceased (N=23). The attentional pattern was trained using fMRI data from a modified Stroop task assessing selective attention to reminders of the deceased. The representational pattern was trained using fMRI data from a task presenting pictures and stories of the deceased. We observed spontaneous fluctuations in these processes occurring during a neutral mindwandering fMRI task (N=27). At higher levels of avoidant grieving, activation of attentional control disrupted the relationship between the representational process and thoughts of loss. These findings show that avoidant grief involves attentional control to reduce the likelihood that deceased-related representations reach full conscious awareness.
Même s'il n'est pas confronté directement à la mort, l'enfant s'interroge.
Parfois des deuils frappent tôt. On ne répond pas toujours à ses questions. Il pressent, il devine à travers les non-dits ou les dérobades des adultes, le poids de la souffrance, le chagrin d'une séparation.
Faute d'explication, l'enfant s'en invente, à la mesure de son expérience et de sa compréhension.... Mieux vaut en parler avec lui, l'écouter, lui dire avec ses mots à soi, avec tendresse, ce que l'on sait et ce que l'on vit.