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In this chapter, the private and public roles of memorial architecture are addressed in respect to three relevant topics: collective remembrance and competing memories, the process of bereavement, and the possibilities of architecture as an element of agency in remembering and dealing with a difficult past. Since rituals are articulated through space, the investigation then turns towards a distinction of underlining spatial concepts that are essential in modern memorial architecture. The commemorative potential of cemeteries and landscapes is explored in a brief analysis of the symbolic language and transitional qualities of both funerary and memorial architecture.
Adverse childhood experiences (ACEs) and their impact cannot be clearly distinguished from other distressing life experiences. Much can be therefore be learned by integrating ACEs research with similar, well-established literatures. Future research needs to explain individual differences in relationships between ACEs and particular variables and locate reliable and strong risk factors for ACEs themselves.
Despite the frequency that refugees suffer bereavement, there is a dearth of research into the prevalence and predictors of problematic grief reactions in refugees. To address this gap, this study reports a nationally representative population-based study of refugees to determine the prevalence of probable prolonged grief disorder (PGD) and its associated problems.
This study recruited participants from the Building a New Life in Australia (BNLA) prospective cohort study of refugees admitted to Australia between October 2013 and February 2014. The current data were collected in 2015–2016, and comprised 1767 adults, as well as 411 children of the adult respondents. Adult refugees were assessed for trauma history, post-migration difficulties, probable PGD, post-traumatic stress disorder (PTSD) and mental illness. Children were administered the Strengths and Difficulties Questionnaire.
In this cohort, 38.1% of refugees reported bereavement, of whom 15.8% reported probable PGD; this represents 6.0% of the entire cohort. Probable PGD was associated with a greater likelihood of mental illness, probable PTSD, severe mental illness, currently unemployed and reported disability. Children of refugees with probable PGD reported more psychological difficulties than those whose parents did not have probable PGD. Probable PGD was also associated with the history of imprisonment, torture and separation from family. Only 56.3% of refugees with probable PGD had received psychological assistance.
Bereavement and probable PGD appear highly prevalent in refugees, and PGD seems to be associated with disability in the refugees and psychological problems in their children. The low rate of access to mental health assistance for these refugees highlights that there is a need to address this issue in refugee populations.
While the burden of caring for people living with dementia has been well documented, considerably less is known about how carers transition into post-care life. This study aimed to understand the experiences of primary family care-givers of people with dementia after the person with dementia has died. A specific focus of the research was understanding the barriers to transitioning into a positive post-care life, and facilitators that help sustain carers as they move forward after their care journey has ended. A qualitative exploratory, descriptive study was undertaken with nine primary carers for a family member who died with dementia (five spouses and four adult children). Semi-structured face-to-face or telephone interviews were conducted with carers between July and August 2016. Interview transcripts were analysed using a thematic approach. A number of factors that can act as barriers or facilitators to transition for carers were identified. Contextualising loss, restructuring identity, psychological health issues and the influence of social attitudes seemed to have a strong influence on carer outcomes. The findings highlight the need for further systematic social and informational support for carers to moderate post-care trajectories and improve carer transition.
Thiamine deficiency (TD) is recognized in various kinds of disease with associated loss of appetite including cancer. However, it has not been recognized to date in bereaved partners after spousal loss from cancer.
From a series of bereaved partners who lost a spouse to cancer, we report on those who developed TD after bereavement.
Case 1 was a 57-year-old woman who sought consultation at our “bereavement clinic.” Her husband had been diagnosed with pancreatic cancer one year earlier and had died one month previously. At the first visit, she was observed to suffer depression, anxiety, and decreased appetite. Neurological, blood, and biochemical examinations did not reveal any noteworthy findings. She was diagnosed with uncomplicated bereavement. Detailed examination revealed that her appetite had been markedly decreased for approximately five weeks. The diagnosis of TD was supported by her abnormally low serum thiamine level. Case 2 was a bereaved 73-year-old male who had lost his wife to hypopharyngeal cancer one month previously after a five-year illness. He had shown a lack of energy for the month preceding his wife's death, but because there was no improvement after her death, his family recommended he seek consultation at our “bereavement clinic.” He was suffering from major depressive disorder. Detailed examination revealed that his appetite had been decreased for more than two weeks. Again, the diagnosis of TD was supported by his abnormally low serum thiamine level.
Significance of results
These reports demonstrate that there is a possibility that bereaved could develop TD after the loss of a loved one. TD should be considered whenever there is a loss of appetite lasting for more than 2 weeks, and medical staff should pay careful attention to the physical condition of the bereaved to prevent complications because of TD.
Planning for the preterm birth of a fetus with known anomalies can raise complex ethical issues. This is particularly true of multiple pregnancies, where the interests of each fetus and of the expectant parent(s) can conflict. In these complex situations, parental wishes and values can also conflict with the recommendations of treating clinicians. In this article, we consider the case of a dichorionic twin pregnancy complicated by the diagnosis of vein of Galen aneurysmal malformation (VGAM) in one of the twins at 28 weeks’ gestation. Subsequent deterioration of the affected twin prompted the parents to request preterm delivery to prevent the imminent in-utero demise of the affected twin. However, given the associated risks of prematurity, complying with the parents’ request may have disadvantaged the health and wellbeing of the unaffected twin. This article canvases the complex ethical issues raised when parents request preterm delivery of a multiple pregnancy complicated by a fetal anomaly in one twin, and the various ethical tools and frameworks that clinicians can draw on to guide their decision-making in such cases.
Distinguishing a disorder of persistent and impairing grief from normative grief allows clinicians to identify this often undetected and disabling condition. As four diagnostic criteria sets for a grief disorder have been proposed, their similarities and differences need to be elucidated.
Participants were family members bereaved by US military service death (N = 1732). We conducted analyses to assess the accuracy of each criteria set in identifying threshold cases (participants who endorsed baseline Inventory of Complicated Grief ⩾30 and Work and Social Adjustment Scale ⩾20) and excluding those below this threshold. We also calculated agreement among criteria sets by varying numbers of required associated symptoms.
All four criteria sets accurately excluded participants below our identified clinical threshold (i.e. correctly excluding 86–96% of those subthreshold), but they varied in identification of threshold cases (i.e. correctly identifying 47–82%). When the number of associated symptoms was held constant, criteria sets performed similarly. Accurate case identification was optimized when one or two associated symptoms were required. When employing optimized symptom numbers, pairwise agreements among criteria became correspondingly ‘very good’ (κ = 0.86–0.96).
The four proposed criteria sets describe a similar condition of persistent and impairing grief, but differ primarily in criteria restrictiveness. Diagnostic guidance for prolonged grief disorder in International Classification of Diseases, 11th Edition (ICD-11) functions well, whereas the criteria put forth in Section III of Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) are unnecessarily restrictive.
The short-term impact of prolonged grief disorder (PGD) following bereavement is well documented. The longer term sequelae of PGD however are poorly understood, possibly unrecognized, and may be incorrectly attributed to other mental health disorders and hence undertreated.
The aims of this study were to prospectively evaluate the prevalence of PGD three years post bereavement and to examine the predictors of long-term PGD in a population-based cohort of bereaved cancer caregivers.
A cohort of primary family caregivers of patients admitted to one of three palliative care services in Melbourne, Australia, participated in the study (n = 301). Sociodemographic, mental health, and bereavement-related data were collected from the caregiver upon the patient's admission to palliative care (T1). Further data addressing circumstances around the death and psychological health were collected at six (T2, n = 167), 13 (T3, n = 143), and 37 months (T4, n = 85) after bereavement.
At T4, 5% and 14% of bereaved caregivers met criteria for PGD and subthreshold PGD, respectively. Applying the total PGD score at T4, linear regression analysis found preloss anticipatory grief measured at T1 and self-reported coping measured at T2 were highly statistically significant predictors (both p < 0.0001) of PGD in the longer term.
For almost 20% of caregivers, the symptoms of PGD appear to persist at least three years post bereavement. These findings support the importance of screening caregivers upon the patient's admission to palliative care and at six months after bereavement to ascertain their current mental health. Ideally, caregivers at risk of developing PGD can be identified and treated before PGD becomes entrenched.
Family caregivers (FCs) in China provide hospice care to terminally ill cancer patients; however, few studies have been conducted in China on caregiver burden and bereavement experiences as a process that continues over time. The purpose of this study was to identify the main elements of caring and bereavement experiences for FCs caring for patients diagnosed with terminal cancer.
Twenty in-depth qualitative semistructured interviews were conducted with FCs providing care in a hospice unit in Shenzhen, Southern China. Interview transcripts were analyzed via thematic content analysis.
A framework based on the following eight principal themes was developed through content analysis of our FC interviews: symptoms of the illness, the truth-telling process, attitudes toward death, the “color” of death, social and professional support, the moment of death, and grief and loss.
Significance of results
The analysis showed that caregiving may positively or negatively influence the bereavement process.
Understanding factors that are associated with more adaptive death attitudes and competencies can inspire future health-promoting palliative care strategies and inform approaches to training and development for health professionals. The potential importance of meaning, purpose, quality, and values in life for promoting adaptive death attitudes has been highlighted, but there is limited research in this area, particularly in relation to death competence. The purpose of this cross-sectional study was to develop an understanding of demographic and life-related factors associated with perceived death competence, such as meaning in life and quality of life.
During the course enrollment period of a Massive-Online-Open-Course about death and dying, 277 participants completed questionnaires on death competence, meaning in life, quality of life, and sociodemographic background.
Findings indicated that greater presence of meaning in life, quality of life, age, death experience, and carer experience were each statistically significant unique predictors of death competence scores. Life-related variables were more strongly associated with death competence than demographic variables. Bereavement experience and experience caring for the dying was associated with greater death competence, but there were no differences on death competence between health professionals and the general community. Above all other factors, the presence of meaning in life was the strongest predictor of higher perceived competence in coping with death.
Significance of results
The findings demonstrate important interconnections between our attitudes about life and death. Knowledge of factors associated with poorer death competence may help identify those at risk of greater distress when facing death, and might prove useful additions to bereavement risk assessments. Understanding factors associated with greater death competence in health professionals and volunteers may help predict or prevent burnout and compassion fatigue, and help identify who would benefit from additional training and support. Future longitudinal studies including both health professionals and the general community are needed to determine the effect adaptive attitudes toward meaning in life can potentially have on bolstering subsequent adaptive coping and competence regarding death and dying.
Identifying characteristics of individuals at greatest risk for prolonged grief disorder (PGD) can improve its detection and elucidate the etiology of the disorder. The Safe Passage Study, a study of women at high risk for sudden infant death syndrome (SIDS), prospectively examined the psychosocial functioning of women while monitoring their healthy pregnancies. Mothers whose infants died of SIDS were followed in bereavement.
Pre-loss data were collected from 12 000 pregnant mothers and analyzed for their associations with grief symptoms and PGD in 50 mothers whose infants died from SIDS, from 2 to 48 months after their infant's death, focusing on pre-loss risk factors of anxiety, depression, alcohol use, maternal age, the presence of other living children in the home, and previous child loss.
The presence of any four risk factors significantly predicted PGD for 24 months post-loss (p < 0.003); 2–3 risk factors predicted PGD for 12 months (p = 0.02). PGD rates increased in the second post-loss year, converging in all groups to approximately 40% by 3 years. Pre-loss depressive symptoms were significantly associated with PGD. Higher alcohol intake and older maternal age were consistently positively associated with PGD. Predicted risk scores showed good discrimination between PGD and no PGD 6–24 months after loss (C-statistic = 0.83).
A combination of personal risk factors predicted PGD in 2 years of bereavement. There is a convergence of risk groups to high rates at 2–3 years, marked by increased PGD rates in mothers at low risk. The risk factors showed different effects on PGD.
Complicated and persistent grief reactions afflict approximately 10% of bereaved individuals and are associated with severe disruptions of functioning. These maladaptive patterns were defined in Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) as persistent complex bereavement disorder (PCBD), but its criteria remain debated. The condition has been studied using network analysis, showing potential for an improved understanding of PCBD. However, previous studies were limited to self-report and primarily originated from a single archival dataset. To overcome these limitations, we collected structured clinical interview data from a community sample of newly conjugally bereaved individuals (N = 305).
Gaussian graphical models (GGM) were estimated from PCBD symptoms diagnosed at 3, 14, and 25 months after the loss. A directed acyclic graph (DAG) was generated from initial PCBD symptoms, and comorbidity networks with DSM-5 symptoms of major depressive disorder (MDD) and post-traumatic stress disorder (PTSD) were analyzed 1 year post-loss.
In the GGM, symptoms from the social/identity PCBD symptoms cluster (i.e. role confusion, meaninglessness, and loneliness) tended to be central in the network at all assessments. In the DAG, yearning activated a cascade of PCBD symptoms, suggesting how symptoms lead into psychopathological configurations. In the comorbidity networks, PCBD and depressive symptoms formed separate communities, while PTSD symptoms divided in heterogeneous clusters.
The network approach offered insights regarding the core symptoms of PCBD and the role of persistent yearnings. Findings are discussed regarding both clinical and theoretical implications that will serve as a step toward a more integrated understanding of PCBD.
Major life transitions can negatively impact the emotional well-being of older people. This study examined the effectiveness of interventions that target the three most common transitions in later life, namely bereavement, retirement, and relocation.
A systematic search was performed via MEDLINE, EMBASE, CINAHL, Cochrane Library, PsycINFO, and reference lists of retrieved non-randomized and randomized controlled trials (RCTs) in English that studied the effectiveness of interventions addressing the three transitions in those >50 years of age. Two researchers independently selected the publications, piloted the data extraction form, and critically appraised studies specific to transition type and study design.
A total of 11 studies (bereavement: 7; retirement: 2; relocation: 2) of 8 unique interventions met the inclusion criteria of which nine were RCTs and two were of quasi-experimental designs were reviewed. Six studies were group-based interventions, three studies used individualized sessions, and one intervention used a combination of group and individualized programming. Group size varied (20–32 participants), as did qualifications of those administering the interventions. The methodological quality of included studies was weak. Findings suggest that group-based approaches provided by trained personnel can mitigate the negative health-related consequences associated with major transitions in later life.
Evidence concerning interventions that address mental health challenges associated with these major transitions is limited. Future research should better characterize participants at study outset and use validated measures to capture effectiveness. Use of peer mentorship to navigate such transitions is promising, but given the small number of studies and their methodological weaknesses, further research on effectiveness is warranted.
Depressive symptoms are common in bereaved caregivers; however, there have been few prospective studies using a structured interview. This study investigated the prevalence and preloss predictors of major depressive disorder (MDD) in bereaved caregivers of patients in a palliative care unit.
This prospective cohort study collected caregiver sociodemographic and psychological data before the death of a palliative care unit patient, including MDD, care-burden, coping style, and hopeful attitude. Postloss MDD was assessed 6 and 13 months after death, and a multivariate logistic regression analysis was conducted to identify its predictors.
Of 305 caregivers contacted, 92 participated in this study. The prevalence of preloss MDD was 21.8%; the prevalences of postloss MDD were 34.8% and 24.7% at 6 and 13 months, respectively. Preloss MDD predicted postloss MDD at 6 months (odds ratio [OR] = 5.38, 95% confidence interval [CI95%] = 1.29, 22.43); preloss nonhopeful attitude and unemployment status of caregivers predicted postloss MDD at 13 months (OR = 8.77, CI95% = 1.87, 41.13 and OR = 7.10, CI95% = 1.28, 39.36, respectively).
Significance of results
Approximately 35% of caregivers suffered from MDD at 6 months postloss, but the prevalence of MDD decreased to about 25% at 13 months. Preloss MDD significantly predicted postloss MDD at 6 months, whereas hopeful attitude and unemployment at baseline were significantly associated with postloss MDD at 13 months.
The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support. This study assessed how this standard is being implemented in current healthcare and palliative care practices, as well as barriers to its implementation.
Experts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of care.
The majority of participants (N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child's death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child's death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool.
Significance of results
Lack of routine assessment of bereavement needs, inconsistent duration of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.
Although the needs of the bereaved have been identified widely in the literature, how these needs translate into meaningful, appropriate, and client-centered programs needs further exploration. The application of receptivity to support is a critical factor in participation by the bereaved in palliative care bereavement programs. Receptivity is a complex multifactorial phenomenon influenced by internal and external factors that ultimately influences engagement in psychosocial support in bereavement. This study explored factors that influence receptivity to bereavement support from palliative care services in rural, regional, and remote Western Australia.
The study comprised a qualitative descriptive research design using semistructured interviews with 24 bereaved individuals, nine palliative care health professionals, and four Aboriginal Health Professionals. Participants were recruited via palliative care services in country Western Australia. Interviews were transcribed verbatim and thematically analyzed.
Findings revealed that a range of individual, social, and geographical factors influence receptivity to bereavement support and can impact on utilization of bereavement support services.
Significance of results
Receptivity provides a frame of reference to enhance understanding of factors influencing engagement in psychosocial support in bereavement. Receptivity promotes a shift of service provider perspectives of effective supportive care to consumer-centric reasons for engagement.
Many bereaved siblings have still not come to terms with their grief many years after the loss, but few studies have focused on what can help. The aims of this study were to identify cancer-bereaved adolescents’ and young adults’ ways of coping with grief after loss of a sibling, and examine whether these ways of coping were related to their experience of having worked through their grief.
This nationwide survey of 174 cancer-bereaved siblings (73% participation rate) is based on one open-ended question about coping with grief (“What has helped you to cope with your grief after your sibling's death?”) and one closed-ended question about siblings’ long-term grief (“Do you think you have worked through your grief over your sibling's death?”). The open-ended question was analyzed with content analysis; descriptive statistics and Fisher's exact test were used to examine the relation between type of coping and siblings’ long-term grief.
The siblings described four ways of coping: (1) thinking of their dead brother/sister and feeling and expressing their grief; (2) distracting or occupying themselves; (3) engaging in spiritual and religious beliefs/activities; and (4) waiting for time to pass. One of these categories of coping with grief, namely, engaging in spiritual and religious beliefs and activities, was associated with siblings’ experience of having worked through their grief two to nine years after the loss (p = 0.016).
Significance of results
Those siblings who had used spirituality, religious beliefs, and activities to cope were more likely to have worked through their grief than those who had not.
Among African Americans, spirituality is meaning or purpose in life and a faith in God who is in control of health and there to provide support and guidance in illness situations. Using qualitative methods, we explored the use of spirituality to make sense of the end-of-life and bereavement experiences among family members of a deceased cancer patient.
Data in this report come from 19 African Americans who experienced the loss of a family member to cancer. A qualitative descriptive design was used with criterion sampling, open-ended semistructured interviews, and qualitative content analysis.
Participants made sense of the death of their loved one using the following five themes: Ready for life after death; I was there; I live to honor their memory; God's wisdom is infinite; and God prepares you and brings you through. These five themes are grounded in conceptualizations of spirituality as connectedness to God, self, and others.
Significance of results
Our findings support the results that even during bereavement, spirituality is important in the lives of African Americans. African American family members might struggle with issues related to life after death, their ability to be physically present during end-of-life care, and disentangling beliefs around God's control over the beginning and ending of life. The findings in this report can be used to inform healthcare providers to better support and address the needs for support of African American family members during end-of-life and bereavement experiences.
Most terminally ill cancer patients prefer to die at home, yet only a minority are able to achieve this. Our aim was to investigate the factors associated with cancer patients achieving their preference to die at home.
This study took the form of a mortality followback, population-based, observational survey of the relatives of deceased cancer patients in Northern Ireland. Individuals who registered the death of a friend or relative (aged ≥ 18 years) between 1 December 2011 and 31 May 2012, where the primary cause of death was cancer (ICD10: C00–D48), who were invited to take part. Preferred and actual place of death, and patient, service, and clinical data were collected using the QUALYCARE postal questionnaire. Multivariable logistic regression was employed to investigate the factors associated with achieving a home death when preferred.
Some 467 of 1,493 invited informants completed the survey. The 362 (77.5%) who expressed a preference for dying at home and spent time at home in their final 3 months were included in our analysis. Of these, 53.4% achieved their preference of a home death. Factors positively associated with achieving a home death were: living in an affluent area, receipt of good and satisfactory district nurse care, discussing place of death with health professionals, and the caregiver's preference for a home death. Being older than 80 years of age, being a Presbyterian, and being unconscious most of the time during their final week were negatively associated with achieving a home death.
Significance of Results:
Communication, care satisfaction, and caregiver preferences were all associated with home death. Our findings will help inform the design of future interventions aimed at increasing the proportion of patients achieving their preferred place of death at home, for example, by targeting interventions toward older patients and those from the most deprived communities.