Bereaved Families Research Articles

Support for parents and families after stillbirth and neonatal death.

This is a protocol for a Cochrane Review (intervention). The objectives are as follows: To identify and assess the effect of support interventions focused on psychological, social, and emotional outcomes for bereaved parents (including birth and non-birthing mothers, fathers, partners) and family members of parents (e.g. grandparents; siblings) who have experienced stillbirth or neonatal death.

The distress and benefits of the Bereaved Family Survey: A mortality follow-back survey

ContextThe Bereaved Family Survey is an important method for evaluating the quality of palliative care. ObjectivesTo examine the distress and benefits of bereaved families of patients with or without cancer, who participated in a Bereaved Family Survey, and identify factors associated with distress and benefits. MethodsWe conducted a nationwide cross-sectional, self-reported questionnaire mail survey among the bereaved families of patients who died of cancer, heart disease, cerebrovascular disease, pneumonia, or kidney failure. Participants answered questions on a four-point Likert scale measuring the distress and benefit associated with participating in the Bereaved Family Survey. We conducted a qualitative analysis of responses to open-ended questions about the distress and benefits of participating in the survey to comprehensively examine the distress and benefits of participating in the survey. ResultsQuestionnaires were distributed to 115,816 eligible bereaved family members between February 2019 and February 2020; 62,576 (54.0%) family members returned valid responses. Distress and benefits accounted for 51.4% and 49.3%, respectively. The results of the binomial logistic analysis for distress were significantly higher among cancer patients (p<0.001–0.003), 20–39-year-old patients (p<0.001), female bereaved family members (p<0.001), and bereaved family members with poor mental health statuses (p<0.001). Factors related to “benefit” were significantly higher among over-80-year-old bereaved family members (p<0.001), higher care evaluation scale (CES) scores (p<0.001), and higher good death inventory (GDI) scores (p<0.001). ConclusionBereaved family members experience both distress and benefits. There is need to devise ways to reduce distress and increase its benefits to continue assessing the quality of palliative care.

Impact of diagnosis non-disclosure on quality of dying in cancer patients: a bereavement study

ContextPatients should be optimally informed about their illness for patients’ autonomy and shared decision-making. However, diagnosis non-disclosure to patients is traditionally widespread in Japanese culture with family-oriented autonomy. There is insufficient research on quality of death (QOD) and quality of care (QOC) among patients who are not told their diagnosis. ObjectivesThis study aimed to examine the impact of diagnosis non-disclosure on QOD and QOC in cancer patients. MethodsWe performed a secondary analysis of a cross-sectional, nationwide mortality follow-back survey. The bereaved families responded to the questionnaire. Measurements included decedents’ QOC, QOD, and bereaved families’ outcomes. After using the propensity score matching method based on the covariates which can affect non-disclosure actions to compare the “disclosure” group and “non-disclosure” group, we compared differences in QOC, QOD, and bereaved families’ outcomes between the two groups. ResultsOf the 110,990 family members who were sent the questionnaires, we finally analyzed 46,672 responses. The disclosure group and non-disclosure group included 42,300 (90.6%) and 4,372 (9.4%) decedents, respectively. Most of the QOD domains (14/18) showed significantly higher scores in the disclosure group compared with the non-disclosure group. In terms of QOC domains, all domains showed higher scores in the disclosure group. Respondents in the disclosure group reported higher overall care satisfaction. Conclusion: We demonstrated that overall QOD and QOC in decedents with cancer were significantly higher in decedents with explicit cancer diagnoses. Furthermore, bereaved family members’ outcomes were better among the family members of decedents with an explicit cancer diagnosis.

Pediatric Palliative Care Simulation Improves Resident Learning Outcomes: an 11-Year Review

Context: Many general pediatrics residents lack sufficient opportunities to conduct difficult conversations with families, particularly about end-of-life care. Simulation learning is an effective means of practicing professional skills. A pediatric palliative care (PPC) physician is uniquely suited to mentor residents and fellows learning to lead difficult conversations through simulation. Co-facilitation of the simulated difficult conversation by a bereaved parent or family member enhances the learning experience. Objectives: To report 11-years’ experience simulating difficult conversations with bereaved parent-actors. Methods: PPC physicians developed two simulations to teach difficult conversations to clinical learners at a midwestern quaternary pediatric medical center. Bereaved parents and hospital chaplains co-facilitated the simulation. The first portrayed the death of an infant following emergency resuscitation, and the second, a goals-of-care conversation with the parent of a child with a degenerative condition. A de-novo evaluation rubric was prepared using the six Accreditation Council for Graduate Medical Education (ACGME) Core Competencies to evaluate the participant's performance in the simulation. Results: For the first simulated scenario (N=194 residents; N=16 fellows), residents improved significantly on 16/21 ACGME-based criteria between encounters; for the second (N=118 residents; N=14 fellows), residents improved significantly on 10/21 criteria. Fellows’ performance did not improve significantly in either scenario, but they presented with high baseline scores. Conclusions: Simulations with bereaved parent actors improved general pediatrics residents’ performance and comfort during difficult conversations and are transportable to diverse settings.

Psychological autopsies: religious and spiritual factors for suicide in cases and controls.

In recent years, there has been a growing body of evidence supporting the notion that spirituality and religion can improve one's physical and mental health. Studies show that religion and spirituality play a significant role in the suicidal path. Considering the dearth of data on the patterns of suicidal thoughts, acts and related factors in Pakistan, a country with a large Muslim population and stigma with sociocultural perceptions of religious notions, the current study investigated the role of religious and spiritual factors of suicide using psychological autopsies. Purposive sampling was used to gather retrospective data records from police stations and hospital forensic departments in Rawalpindi and Islamabad, Pakistan, between January 2021 and July 2022. In total, 60 samples (30 cases and 30 controls) were used in this autopsies investigation. As with the majority of case control studies, the study sample cases were matched with the controls. At least two close bereaved family members served as the primary information sources, and data was gathered using the Semi Structured Interview Protocol for Psychological Autopsies. According to statistical analysis, both the suicide cases and the controls were comprised mostly of Muslim individuals. They follow Islam and hold the view that suicide is prohibited, forbidden, and haram in Islam. Regarding spirituality and religion, the majority of cases, according to the respondents interviewed, were not spiritual at all, while the controls are slightly spiritual. While the majority of both cases and controls had reduced interest in or practice of religious activities over the past year, a higher number of cases rarely performed and attended the religious services/activities as compared to controls. It was thus evident that the cases lacked significant engagement in spiritual and religious activities, and their attendance at such gatherings had notably decreased in the year preceding the suicide attempt. This decline in involvement in spiritual and religious practices might be linked to decreased levels of satisfaction, sense of belongingness, which could raise the risk of suicide. Therefore, in nations where Muslims predominate, culturally relevant suicide prevention initiatives including spiritual and religious treatments aimed at reducing the risk of suicide should be considered.

A study on music therapy aimed at psychological trauma recovery for bereaved families driven by artificial intelligence.

This study explores the effectiveness of music therapy in repairing psychological trauma in bereaved families, aiming to provide a comprehensive understanding of its potential therapeutic impact. It begins with an analysis of the current situation faced by bereaved families, identifying the psychological challenges they experience. The research design included the recruitment of participants from bereaved families, who were then divided into an experimental group and a control group. An optimized Long Short-Term Memory (LSTM) network model was constructed to analyze music therapy data, tailored specifically to capture the nuances of this therapeutic process. The experimental procedure detailed the specific operations involved in the music therapy sessions and established a clear comparison framework between the two groups. The performance of the proposed LSTM model demonstrated high accuracy (0.85), precision (0.86), recall (0.84), and F 1-score (0.85), indicating its effectiveness in predicting treatment outcomes. When compared to the Self-Reporting Inventory-90 (SCL-90) scale, the model captured the trend of treatment effects with a high level of accuracy and reliability. Notably, participants numbered 2, 6, and 8 in the experimental group showed substantial improvement rates of 67.21%, 71.45%, and 75.67%, respectively, in their psychological health issues. The comparative analysis between the experimental and control groups confirmed that the music therapy approach, as guided by the proposed LSTM model, led to a more significant improvement in psychological health issues for bereaved families. This suggests that the model offers a promising avenue for enhancing the effectiveness of music therapy in this context.

Understanding Intensive Care Unit Family Caregivers' Vulnerability to Post-Traumatic Stress Disorder: The Impact of Neurotic Personality Traits, Emotional Suppression, and Perceptions of Unexpected Death.

Rationale: Family members of patients who die in an intensive care unit (ICU) are at heightened risk of post-traumatic stress disorder (PTSD) symptoms. Not all surrogates develop these symptoms and heterogeneity exists in PTSD symptom clusters. Objectives: The study tested a personality model of PTSD symptoms in bereaved family caregivers of ICU patients. It was hypothesized that family members endorsing higher levels of neurotic personality traits would report higher levels of PTSD symptom clusters and that these associations would be explained by tendencies to view the patient's death as unexpected and to cope by suppressing their emotions. Methods: Participants were family members of ICU patients at an urban, academic medical center who either died or were discharged to an inpatient hospice unit. Participants were contacted for participation at least six months after the patient's death. Participants completed measures of personality, emotion regulation, and PTSD symptoms. Data were analyzed using path analysis. Results: Approximately one-third (35%) of the sample of 162 caregivers endorsed at-risk levels of PTSD. Individuals reporting higher levels of neurotic personality traits reported more PTSD symptoms (r = 0.53, p < 0.001). Perceptions that the patient death was unexpected partially explained the association of neuroticism with the intrusive re-experiencing PTSD symptoms (B = 0.45, p = 0.031). In contrast, emotional suppression partially explained the association of neuroticism with avoidance (B = 0.70, p = 0.010) and hyperarousal symptom clusters (B = 0.37, p = 0.041). Conclusions: Family vulnerability to PTSD after an ICU death can be conceptualized based on neurotic personality traits. Tendencies to view the patient's death as unexpected may contribute to intrusive thoughts and memories of the ICU experience. Individuals may avoid reminders and remain at heightened levels of arousal when they suppress their emotional experiences. Key Message: Family members who experience the death of a loved one following ICU treatment are vulnerable to PTSD symptoms. These reactions to ICU-related losses may be shaped by family members' personalities, expectations, and emotion regulation styles. Understanding these characteristics could inform family screening and intervention efforts in the ICU.

SY8-4 The essence of the Clinical Practice Guidelines for the care of psychologically distressed bereaved families and future prospects

SY8-4 The essence of the Clinical Practice Guidelines for the care of psychologically distressed bereaved families and future prospects

Mapping the Landscape of Those Left Behind When a Person With Dementia Dies: Roles of Race and Ethnicity.

People with dementia can have many family and friends who might be affected by their deaths. Pursuing the long-term aim of understanding how dementia deaths affect close family and friends, this project lays groundwork through estimates of who those close family and friends are, with special attention to race and ethnicity. Regression models estimated associations between dementia, race/ethnicity, and close family and friend network size, controlling for age, sex, education, marital status, and household wealth for 1386 deceased people with dementia from the Health and Retirement Study (2004 to 2018). Persons with dementia had an average of 9.4 close family and friends at death. But patterns of close family and friends were different among non-Latino Black (10.8), Latino (9.9), and non-Latino White (9.2) people with dementia at death. Notably, non-Latino White persons with dementia had the fewest close family (3.7), followed by non-Latino Black (5.1), and Latino (7.7) persons with dementia. Knowing who might be affected by dementia deaths is the first step to explore how dementia-related deaths impact close family and friends. Future work can now sample bereaved family and friends of people with dementia to explore their experiences and develop culturally appropriate supports.

Age estimation of Phormia regina pupae based on ATR-FTIR and chemometrics

Accurate postmortem interval estimation is vital in the investigation of homicides, suicides, and accidental deaths. It is key in narrowing suspect lists, improving crime-solving efficiency, and offering solace to bereaved families. The intra-puparial period, comprising about half of a fly’s developmental cycle, presents challenges for morphological age estimation. External changes are limited to color shifts and the appearance of respiratory horns on the puparium only within several hours after pupariation, while detailed internal development analysis often requires invasive methods like removing the puparium, which can be damaging. Additionally, these techniques usually depend on a forensic entomologist’s expertise, which lead to subjective biases. This study employed attenuated total reflection-fourier transform infrared spectroscopy, a rapid, non-destructive method for analyzing proteins, chitosan, and chitin in puparia. Data showed a consistent reduction in the concentration of the amide I band within the puparium during the intra-puparial development at five constant temperatures (19 °C, 22 °C, 25 °C, 28 °C and 31 °C). This trend in the spectral data effectively distinguishes pupae at various stages of intra-puparial development, facilitating precise age estimation, which is critical for the estimation of the minimum postmortem interval (PMImin). Finally, this work combined the total reflection-fourier transform infrared spectroscopy with chemometric analysis and successfully developed a partial least squares discriminant analysis model and a random forest model, with accuracies of 88 % and 81 %, respectively. These models enable the non-invasive age estimation of P. regina in its intra-puparial period, a stage traditionally difficult to assess morphologically, thus laying the groundwork for PMImin estimation using fly pupae.

Qualitative study on health self-management of patients with metabolic syndrome among bereaved population after earthquake

The study explore the influencing factors and healthy self-management of MS patients with bereaved relatives after Wenchuan and Yushu Earthquake of their real life; explore difficulties and challenges in the process of self-management; and supply information that could not be sought in quantitative studies. Purposive sampling was used to recruit 36 MS patients who are bereavement population in two earthquakes, and those patients met the inclusion criteria for semi-structured focus group interview. The Nvivo11 software was used to collate and analyze the transcribed data. The main influencing factors of health self-management behavior for MS patients are as follows: the degree of understanding of disease prevention knowledge, emotion management induced by earthquake trauma, the source of disease-related information, access and identification are very limited; ethnic traditional culture, religious beliefs, and production activities and routines before and after the earthquake is an important factor in their healthy self-management behavior. The lack of health beliefs and self-efficacy of MS patients among bereaved families after Wenchuan and Yushu earthquake are key obstacle in their self-management. The overall level of the knowledge of patients’ MS prevention, self-efficacy and self-management behaviors are still low. Some positive factors that can be changed including MS prevention knowledge, self-efficacy, social support, and family function. Some negative factors which can be improved afterwards, including negative coping style, traumatic life experiences from earthquake and smoking.

Medical examiner service in children’s deaths: a survey of current practice in paediatric intensive care units in England and Wales

IntroductionA statutory system of medical examiners (ME) was introduced in England and Wales in September 2024. The next of kin will be given the opportunity to speak to the ME...

Bereavement dyadic coping questionnaire: Development and validation

Most theories and empirical studies of bereavement coping focus on the individual, although researchers have highlighted the importance of family-level coping and proposed the concept of bereavement dyadic coping (BDC). We developed and validated a 25-item Bereavement Dyadic Coping Questionnaire (BDCQ). The procedure includes item generation, expert review, and examination of the psychometric properties in 241 bereaved persons in bereaved families from China. Factor analysis revealed four factors: direct loss-oriented, indirect loss-oriented, restoration-oriented, and collaborative. The questionnaire had satisfactory internal consistency, test-retest reliability, and convergent and divergent validity. The BDCQ is the first of its kind to measure dyadic coping in the context of bereavement, permitting future quantitative explorations of bereavement dyadic coping and its influence on bereaved individuals and families.

Family Experiences of Loss and Bereavement in Palliative Care Units during the COVID-19 Pandemic: An Interpretative Phenomenological Study.

The COVID-19 pandemic significantly interrupted the grieving experiences of bereaved families and drastically changed their ways of dealing with loss. Our study aims to gain an in-depth understanding of the experience of bereaved relatives of patients who died in palliative care units during the COVID-19 pandemic. The phenomenological research design included sixteen family members of hospitalized palliative patients who died from November 2021 to June 2022. The study involved conducting qualitative in-depth semi-structured interviews with family members 12-24 months after the death of their loved ones. The interviews aimed to gather information about the experiences of the families both before and after the death. The COREQ guidelines were applied in the study. Participants were mainly female (n = 13) with a mean age of 47.25 (SD = 12.58). Data were analysed using the Interpretative Phenomenology Analysis (IPA). The following three categories were identified: (1) navigating loved ones' final weeks and days (troubled deaths); (2) the last farewell was robbed; (3) looking for adjustment after loss. One overall main theme emerged, which was as follows: "Struggling between stolen moments and painful losses to get back into the flow of life". This study provides novel insights into end-of-life care and bereavement from the perspectives of family. Our findings suggest that developing and promoting family-centred culture can lead to compassionate palliative care focused on a myriad ways of affirming that their loved one matters.

Contextual Representation of Mourning Rituals: A Case Study of Rural Punjab (Pakistan)

This study is conducted to explore the mourning rituals performed in the rural area of Punjab Pakistan. Specifically, the research focusses on the dynamics between culture and death rituals signified through different religio-cultural practices. The qualitative methods are used employing ethnographic research design. To analyze the data, the thematic analysis technique is used. The study found that the people in rural areas of Punjab perform different rituals on death to show their emotions and intensity of grief. The results show that people in this area practice rituals following their religious and cultural beliefs to please the soul of the deceased as well as to show their reaction towards grief. The findings of this study reveal that wailing, crying, cutting one's body and burning the stick of sage are a few of the mourning rituals that are commonly prevalent in rural Punjab to express grief. Moreover, different folklores are also sung to dialogue the departed soul with other community members and God, which is a great source of attention seeking for showing massive grief. Nature of death and economic disparity is also played a major role while expressing the grief. Generally, the bereaved families use such rituals to get an escape from the grief. To sum up the study found that the death rituals to express and share individuals’ grief are decline in the culture of rural Punjab.

군인의 죽음과 관련된 몇 가지 법적 과제

The death of a soldier signifies a profound sacrifice and dedication to the national community, and as such, it should be properly honored. It also reflects the values upheld by the nation. This article addresses various legal issues related to the death of soldiers, including distinctions between combat-related deaths, duty-related deaths, and other categories under the Military Personnel Act, as well as decisions regarding national merit and compensation under the National Merit Act and the Veterans' Compensation Act. Recently, the revision of the Military Court Act transferred the authority to investigate military deaths from the military to the National Police Agency, which is a positive development. However, considering that approximately 60-80% of recent military deaths are suicides, these cases often lack criminal allegations and are quickly concluded, potentially leading to inadequate investigations of significant unit-related factors. This highlights a limitation of the current system. The article also discusses issues such as the categorization of duty-related deaths, conflicts or inconsistencies between the National Merit Act and the Veterans' Compensation Act Enforcement Decree, among others. It is essential to establish a state agency independent of the military to investigate not only the deaths of soldiers but also the related unit-level factors. This is crucial to prevent the recurrence of similar incidents. The Military Human Rights Protection Officer, who also serves as a standing commissioner of the National Human Rights Commission, could fulfill this role. Additionally, this agency should have the authority to review decisions regarding death classifications if objections are raised by the bereaved families. Currently, the Central Military Merit Review Committee, which operates under the Ministry of National Defense, is responsible for re-investigating the causes of death. This could be seen as a conflict of interest, as it involves self-judgment. To address this, it may be beneficial for a newly established Military Human Rights Supervisory Body to assume the final responsibility for re-investigations and death classification judgments. In summary, this new body should be responsible for 1) the protection of and policy development regarding military human rights, 2) the investigation of military death cases based on complaints from bereaved families or ex officio, and 3) the re-investigation and review of death classifications upon objections from the bereaved.

A Phenomenological Study on Vicarious Trauma Experienced by Social Workers Who Provide Counseling Services to Suicide Bereaved Families

A Phenomenological Study on Vicarious Trauma Experienced by Social Workers Who Provide Counseling Services to Suicide Bereaved Families

ABULOY: Varied Expressions of Sympathy, Empathy and Apathy

The present study aimed to determine and explore the cultural value of abuloy in the Filipino culture and also determine its significance to the concept of fellowmen among Filipinos. It also asked specific questions regarding the context of abuloy in the Filipino culture; forms, gestures or expression that can be shown in times of family’s grieving in terms of being expressed with sympathy, empathy, apathy; giving of abuloy of Filipinos during the wake and after bereavement; how Filipinos are guided by cultural beliefs and practices in giving abuloy; changes in the cultural meaning and social recognition for the giving of abuloy; the different factors affecting the act of giving abuloy and also how the findings of thispresentstudy can contribute to an additional learning material. The study made use of the mixed method of research approach particularly with the use of the interview form and survey questionnaire as the primary tools for the data gathering process of the study. The findings of the study revealed that abuloy in the context of Filipino culture was mostly embedded on the idea of a financial assistance provided to the bereaved family and as an act of compassion and condolence; on the other hand, in terms of sympathy, thisis mostly expressed in considering the grief circumstances in which the bereaved family is currently going through; further, with regards to empathy, this is understanding the way in which a family feels when grieving; and finally, in terms of apathy, this is more expressed on being unaffected by the grief of the bereaved family. The participants also indicated that there was really no binding tradition that guides them in giving abuloy as long as it is based on having the intention to show compassion, in line with their financial capacity and budget; out of kindness and also to at least help the bereaved family with their present suffering. It can be concluded that most Filipinos express non-belief and non-adherence to common practices and beliefs, but they are increasingly reliant on the idea that providing or giving "abuloy" to the bereaved family is a form ofsocial obligation that everyone should fulfill in order to show compassion and care for other people's difficult situations.

Exploring Funeral Directors' Experience and Perceived Impact of Providing Funeral Services During COVID-19 Restrictions.

The importance of ritual/ceremony following bereavement is well documented, however restrictions during the COVID-19 pandemic impacted the freedom to bury loved ones according to beliefs/traditions. This study explores the experiences of staff providing funeral services during COVID-19 and considers the implications for supporting bereaved families. Fifty-eight staff (male, 72.4%; n = 42) from 17 counties in Ireland, completed a self-report survey assessing perceived impact of COVID-19, confidence providing services, and challenges and supports for practice during this time. Quantitative findings suggest moderate confidence in service provision and low perception of negative impact from COVID-19, while qualitative results highlight a contrast between a feeling of under-recognition at a policy level and a sense of being appreciated by the public. This study highlights the evolving role of the funeral sector in Ireland in supporting the bereaved, and the potential to capitalise on a genuine interest in contributing more to support beyond the funeral.

Bereaved parent preferences on quality end-of-life care for children with cancer in the South.

The authors sought to understand bereaved family preferences for end-of-life (EOL) care, particularly among Black families and those in the South. Semi-structured interviews were conducted with parents of children who died of cancer ≥6 months before at Children's of Alabama. Themes were identified via content analysis. Quotes related to medical intensity, chemotherapy, and location of death (LOD) were scored on 5-point Likert scales, ranging from 1 (comfort care, chemotherapy, or home death) to 5 (medically intense care, avoidance of chemotherapy, or hospital death). Twenty-seven bereaved parents (12 Black) were interviewed. Children died at a mean of 13.1 years (SD=6.1 years) and a median of 3 years before the interview (range=1-12 years). Ten children (42%) had central nervous system tumors and the majority (63%) died in the hospital. Family decision-making involved maintaining hope, not causing harm, doing what was best for their child and themselves, and religious beliefs. There was no clear preference for home versus hospital death (3.0 [1.8-4.0]). Instead, parents considered their child's desires and/or medical needs, siblings, and prior experiences with death. To have a comfortable death, parents highlighted the need for comprehensive education about their child's EOL, a caring and comfortable environment, and 24/7 access to their care team. Families expressed a dual preference for comfort care (1.8 [1.3-2.8]) and chemotherapy (3.5 [2.7-4.1]) at EOL. Families did not see chemotherapy and comfort care as conflicting goals. They sought quality care emphasizing flexibility, quality time with their child, and open access to their care team, regardless of LOD.