"I grieve because I loved her:" Bereaved parents' perceptions of a mindfulness-based retreat.

Mindfulness-based interventions have recently been applied to grief-related distress. However, little is known about how bereaved participants experience them. This study explored bereaved parents' experiences of a mindfulness-based grief retreat through semi-structured interviews with 19 participants. Interview transcripts were thematically analyzed to gain an understanding of how participants experienced the retreat and its perceived effect on their lives. Four themes representing the perceived benefits of the retreat emerged: psychoeducation, mindfulness, mutual support and understanding, and relationships. The mindfulness-based retreat was generally experienced as beneficial in coping with the death of a child.

"Perhaps something of beauty can grow:" experiences of care farming for grief.

Care farming has been used to alleviate distress and increase wellbeing in various populations. This study provides an overview of how bereaved adults (N = 115) experienced a grief-specific care farm through a content analysis of open-ended survey questions. The care farm's nature spaces and interactions with animals emerged as important components of the experience, interacting with grief-related activities and experiences. Together, the spaces and species of the care farm provided a supportive context for integrating grief, processing emotions, and receiving compassionate support. Some participants also experienced changes in how they viewed their grief and improvements in interpersonal relationships.

"It Started After Trauma": The Effects of Traumatic Grief on Sleep Paralysis.

Adverse life events are associated with the often-terrifying REM sleep parasomnia of sleep paralysis (SP), but the impact of bereavement on SP has not been specifically examined. This exploratory, mixed-methods study (N = 168) includes qualitative data from 55 participants who described factors they believed led to their SP. Of these, almost half with a traumatic loss listed death-related precipitants. In unadjusted (bivariate) negative binomial regression models, traumatic death, time since death, religiosity, and age estimated increased SP frequency in the prior month, prior year, or both. In multivariable models, traumatic death, time since death, and age estimated increased frequency in the prior month, prior year, or both. Unexpectedly, in all models, as compared to death ≥9 years earlier, prior month SP was greater with death 1-6 years earlier, but not <1 year earlier. Discussion includes the possible role of social constraints in traumatic grief trajectories and care provider recommendations.

"As if Nothing Happened": Experiences of Bereaved Parents in Romania.

Prior research has found high levels of distress in parents who experience the death of a child; however, Romanian parents, whose experiences are influenced by the nation's shared historical trauma, have not been studied. This mixed-methods study found very high levels of distress in a sample of 237 bereaved parents in Romania, primarily women. Specifically, 89% of respondents scored above the clinical cutoff for trauma responses, 66% did so for anxious responses, and 82% did so for depressive responses. Qualitative analyses of respondents' narratives suggest that, through complex interactions between political, social, and medical systems, the lack of care after the death of a child seems to incite additional distress in parents. These findings warrant further exploration of traumatic grief in Romania, especially in the context of historical and political trauma, and of ways in which support can be provided to grieving parents in this unique cultural milieu.

The Long Road to Farewell: The Needs of Families With Dying Children.

Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with health-care providers. This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child's terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants' perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence, and thus compounded the experience of loss. Specifics and implications for practice are explored.

Stillbirths: economic and psychosocial consequences.

Despite the frequency of stillbirths, the subsequent implications are overlooked and underappreciated. We present findings from comprehensive, systematic literature reviews, and new analyses of published and unpublished data, to establish the effect of stillbirth on parents, families, health-care providers, and societies worldwide. Data for direct costs of this event are sparse but suggest that a stillbirth needs more resources than a livebirth, both in the perinatal period and in additional surveillance during subsequent pregnancies. Indirect and intangible costs of stillbirth are extensive and are usually met by families alone. This issue is particularly onerous for those with few resources. Negative effects, particularly on parental mental health, might be moderated by empathic attitudes of care providers and tailored interventions. The value of the baby, as well as the associated costs for parents, families, care providers, communities, and society, should be considered to prevent stillbirths and reduce associated morbidity.

Stillbirths: recall to action in high-income countries.

Variation in stillbirth rates across high-income countries and large equity gaps within high-income countries persist. If all high-income countries achieved stillbirth rates equal to the best performing countries, 19,439 late gestation (28 weeks or more) stillbirths could have been avoided in 2015. The proportion of unexplained stillbirths is high and can be addressed through improvements in data collection, investigation, and classification, and with a better understanding of causal pathways. Substandard care contributes to 20-30% of all stillbirths and the contribution is even higher for late gestation intrapartum stillbirths. National perinatal mortality audit programmes need to be implemented in all high-income countries. The need to reduce stigma and fatalism related to stillbirth and to improve bereavement care are also clear, persisting priorities for action. In high-income countries, a woman living under adverse socioeconomic circumstances has twice the risk of having a stillborn child when compared to her more advantaged counterparts. Programmes at community and country level need to improve health in disadvantaged families to address these inequities.

The loss of self: The effect of miscarriage, stillbirth, and child death on maternal self-esteem.

A child's death augments how grieving parents view the world, the family, and the self. Using a representative sample of women ages 25-45 who have ever given birth, we assessed whether miscarriage, stillbirth, and child death impact self-esteem and whether this loss is moderated by maternal identity. We found that stillbirth and child death, but not miscarriage, negatively impacted self-esteem. For those who experienced a loss, the impact on self-esteem was moderated by maternal identity. Women who experienced a stillbirth were the only group who had significantly lower self-esteem after controlling for background characteristics and maternal identity variables.

From grief, guilt pain and stigma to hope and pride - a systematic review and meta-analysis of mixed-method research of the psychosocial impact of stillbirth.

BACKGROUND: Despite improvements in maternity healthcare services over the last few decades, more than 2.7 million babies worldwide are stillborn each year. The global health agenda is silent about stillbirth, perhaps, in part, because its wider impact has not been systematically analysed or understood before now across the world. Our study aimed to systematically review, evaluate and summarise the current evidence regarding the psychosocial impact of stillbirth to parents and their families, with the aim of improving guidance in bereavement care worldwide. METHODS: Systematic review and meta-summary (quantitative aggregation of qualitative findings) of quantitative, qualitative, and mixed-methods studies. All languages and countries were included. RESULTS: Two thousand, six hundred and nineteen abstracts were identified; 144 studies were included. Frequency effect sizes (FES %) were calculated for each theme, as a measure of their prevalence in the literature. Themes ranged from negative psychological symptoms post bereavement (77 · 1) and in subsequent pregnancies (27 · 1), to disenfranchised grief (31 · 2), and incongruent grief (28 · 5), There was also impact on siblings (23 · 6) and on the wider family (2 · 8). They included mixed-feelings about decisions made when the baby died (12 · 5), avoidance of memories (13 · 2), anxiety over other children (7 · 6), chronic pain and fatigue (6 · 9), and a different approach to the use of healthcare services (6 · 9). Some themes were particularly prominent in studies of fathers; grief suppression (avoidance)(18 · 1), employment difficulties, financial debt (5 · 6), and increased substance use (4 · 2). Others found in studies specific to mothers included altered body image (3 · 5) and impact on quality of life (2 · 1). Counter-intuitively, Some themes had mixed connotations. These included parental pride in the baby (5 · 6), motivation for engagement in healthcare improvement (4 · 2) and changed approaches to life and death, self-esteem, and own identity (25 · 7). In studies from low/middle income countries, stigmatisation (13 · 2) and pressure to prioritise or delay conception (9) were especially prevalent. CONCLUSION: Experiencing the birth of a stillborn child is a life-changing event. The focus of the consequences may vary with parent gender and country. Stillbirth can have devastating psychological, physical and social costs, with ongoing effects on interpersonal relationships and subsequently born children. However, parents who experience the tragedy of stillbirth can develop resilience and new life-skills and capacities. Future research should focus on developing interventions that may reduce the psychosocial cost of stillbirth.

Physical activity and depressive symptoms after stillbirth: informing future interventions.

BACKGROUND: In the United States, approximately one in 110 pregnancies end in stillbirth affecting more than 26,000 women annually. Women experiencing stillbirth have a threefold greater risk of developing depressive symptoms compared to women experiencing live birth. Depression contributes negatively to health outcomes for both mothers and babies subsequent to stillbirth. Physical activity may improve depression in these women, however, little is known about acceptable physical activity interventions for women after stillbirth. This is the purpose of this descriptive exploratory study. METHODS: Eligible women were between ages 19 and 45, and experienced stillbirth within one year of the study. An online survey was used to ask questions related to 1) pregnancy and family information (i.e., time since stillbirth, weight gain during pregnancy, number of other children) 2) physical activity participation, 3) depressive symptomatology, and 4) demographics. RESULTS: One hundred seventy-five women participated in the study (M age = 31.26 ± 5.52). Women reported participating in regular physical activity (at least 150 minutes of moderate activity weekly) before (60%) and during (47%) their pregnancy, as well as after their stillbirth (61%). Only 37% were currently meeting physical activity recommendations. Approximately 88% reported depression (i.e., score of >10 on depression scale). When asked how women cope with depression, anxiety, or grief, 38% said physical activity. Of those that reported using physical activity to cope after stillbirth, they did so to help with depression (58%), weight loss (55%), and better overall physical health (52%). To cope with stillbirth, women used walking (67%), followed by jogging (35%), and yoga (23%). Women who participated in physical activity after stillbirth reported significantly lower depressive symptoms (M = 15.10, SD = 5.32) compared to women who did not participate in physical activity (M = 18.06, SD = 5.57; t = -3.45, p = .001). CONCLUSIONS: Physical activity may serve as a unique opportunity to help women cope with the multiple mental sequelae after stillbirth. This study provides data to inform healthcare providers about the potential role of physical activity in bereavement and recovery for women who have experienced stillbirth. Additional research is necessary in this vulnerable population.

The most painful estrangement: Death at birth.

More than two million babies a year die during or before birth around the world, evoking grief that is traumatic. Because the psychological, physical, social, and emotional ramifications of grief following a baby's death are so enduring and intense, social support is essential to helping families cope. In particular, emotional acts of caring and judicious use of language are crucial, avoiding the use of the terms that belittle the value of the baby's life and the importance of the baby as part of a family history. Traumatic grief informed continuing education can aid providers in increasing sensitivity to the needs of grieving families and minimize additional trauma and suffering in the aftermath of such loss.

Status Consumption as Coping With Fear of Death: The Mediating Role of Death Avoidance and the Moderating Role of Materialism.

Individuals employ various coping mechanisms to deal with the fear of death. While materialism and status consumption are commonly recognized in the literature as such strategies, no study has yet empirically tested this premise. Accordingly, this study examined the mediating role of death avoidance in the link between the fear of death and death-related status consumption (DRSC). Data obtained from 346 participants were analyzed using structural equation modeling. The results showed that fear of death significantly and positively influences DRSC and that death avoidance partially and positively mediates this relationship. Results also revealed that materialism strengthens the relationship between fear of death and DRSC, while it does not significantly moderate the relationship between death avoidance and DRSC. These results support the conclusion that death-related status consumption may play a critical role as an avoidance mechanism in coping with the fear of death. This study, being among the few that investigate death-related consumer behaviors, enriches both terror management theory and the literature on consumer behavior in crises.

Support for mothers, fathers and families after perinatal death.

BACKGROUND: Provision of an empathetic, sensitive, caring environment and strategies to support mothers, fathers and their families experiencing perinatal death are now an accepted part of maternity services in many countries. Interventions such as psychological support or counselling, or both, have been suggested to improve outcomes for parents and families after perinatal death. OBJECTIVES: To assess the effect of any form of intervention (i.e. medical, nursing, midwifery, social work, psychology, counselling or community-based) on parents and families who experience perinatal death. SEARCH METHODS: We searched the Cochrane Pregnancy and Childbirth Group's Trials Register (28 January 2013) and article bibliographies. SELECTION CRITERIA: Randomised trials of any form of support aimed at encouraging acceptance of loss, bereavement counselling, or specialised psychotherapy or counselling for mothers, fathers and families experiencing perinatal death. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed eligibility of trials. MAIN RESULTS: No trials were included. AUTHORS' CONCLUSIONS: Primary healthcare interventions and a strong family and social support network are invaluable to parents and families around the time a baby dies. However, due to the lack of high-quality randomised trials conducted in this area, the true benefits of currently existing interventions aimed at providing support for mothers, fathers and families experiencing perinatal death is unclear. Further, the currently available evidence around the potential detrimental effects of some interventions (e.g. seeing and holding a deceased baby) remains inconclusive at this point in time. However, some well-designed descriptive studies have shown that, under the right circumstances and guided by compassionate, sensitive, experienced staff, parents' experiences of seeing and holding their deceased baby is often very positive. The sensitive nature of this topic and small sample sizes, make it difficult to develop rigorous clinical trials. Hence, other research designs may further inform practice in this area. Where justified, methodologically rigorous trials are needed. However, methodologically rigorous trials should be considered comparing different approaches to support.

Rates of Prolonged Grief Disorder: Considering relationship to the person who died and cause of death.

BACKGROUND: Prolonged Grief Disorder (PGD) was recently included in DSM-5-TR. The rate of PGD is known to vary according to a number of factors and little is known about how bereaved individuals view the diagnosis. METHODS: This cross-sectional study assessed PGD rates using the Prolonged Grief-13-Revised (PG-13-R) among a large sample (n = 1137) of bereaved individuals, considering the relationship to the deceased and cause of death. It also investigated bereaved individuals' attitudes toward the diagnosis. RESULTS: Overall, 34.3 % of the sample met PGD criteria. Bereaved parents had the highest rate (41.6 %), followed by bereaved spouses/partners (33.7 %) and siblings (29.4 %). According to cause of death, those bereaved by substance overdose had the highest rate (59.1 %), followed by homicide/suicide (46 %) and accidental (36 %). The majority of respondents (65-95.6 %) viewed their responses, as measured by the PG-13-R items, as normal, and 98.1 % agreed that their responses in general were normal. Fewer than 12 % reported that a PGD diagnosis would be helpful to them. LIMITATIONS: This study used a self-selecting, non-representative sample that was predominantly female and white. Findings may or may not apply to more diverse groups and cannot be generalized. This study also used a self-report measure rather than a clinical interview. CONCLUSIONS: In line with prior research, this study found higher rates of PGD in specific subgroups, including bereaved parents, spouses, and those who lost loved ones to substance overdose, homicide/suicide, or accidents. Bereaved individuals in this sample generally did not view receiving a diagnosis of PGD as helpful.

Stillbirths: why they matter.

In this first paper of The Lancet's Stillbirths Series we explore the present status of stillbirths in the world-from global health policy to a survey of community perceptions in 135 countries. Our findings highlight the need for a strong call for action. In times of global focus on motherhood, the mother's own aspiration of a liveborn baby is not recognised on the world's health agenda. Millions of deaths are not counted; stillbirths are not in the Global Burden of Disease, nor in disability-adjusted life-years lost, and they are not part of the UN Millennium Development Goals. The grief of mothers might be aggravated by social stigma, blame, and marginalisation in regions where most deaths occur. Most stillborn babies are disposed of without any recognition or ritual, such as naming, funeral rites, or the mother holding or dressing the baby. Beliefs in the mother's sins and evil spirits as causes of stillbirth are rife, and stillbirth is widely believed to be a natural selection of babies never meant to live. Stillbirth prevention is closely linked with prevention of maternal and neonatal deaths. Knowledge of causes and feasible solutions for prevention is key to health professionals' priorities, to which this Stillbirths Series paper aims to contribute.

"I'll never forget those cold words as long as I live": parent perceptions of death notification for stillbirth.

This qualitative study analyzed stillbirth notification messages recalled by parents who strongly agreed (n = 47) and strongly disagreed (n = 43) that the way news about the death of their infant was delivered negatively impacted their grieving process. Three message elements formed a core stillbirth notification experience (delay of news delivery; expression of sympathy; communication of death), and three additional message elements occurred in both data sets (communication regarding options; expression of uncertainty; exit of health care provider); however, the messages differed in form and frequency between the two groups. Three message elements reflected opposing experiences for the two groups (support of parent emotion; continuity of care; and information provision). Recommendations for stillbirth notification that emphasize acknowledging parent perceptions, clear language and information, empathetic communication, and continuity of care are given.

Adding a Facebook Support Group to an Online Yoga Randomized Trial for Women Who Have Experienced Stillbirth: A Feasibility Study.

Objectives: Women who experience stillbirth are more likely to develop post-traumatic stress disorder (PTSD), and anxious and depressive symptoms than those who deliver live healthy babies. Participants in a recent study of online yoga (OY) reported a desire for more social support, which may help reduce PTSD related to grief and aid in coping. Facebook (FB) has been used successfully to deliver support for online interventions, but little is known about its use in conjunction with OY. The purpose of this study was to examine the feasibility of a FB support group in conjunction with an 8-week OY intervention. Design: Randomized parallel feasibility trial with a 1:1 study group allocation ratio. Setting/Location: Online. Subjects: Women (N = 60) who experienced stillbirth within the past 3 years. Interventions: Participants were recruited nationally to participate and randomized into one of two groups: OY only (n = 30) or online yoga with Facebook (OYFB) (n = 30). Both groups were asked to complete 60 min of OY per week. Women in the OY group were asked to log on to a FB page at least once per week. Outcome measures: Acceptability (i.e., satisfaction) and demand (i.e., attendance), PTSD, anxiety, depressive symptoms, social support. Results: Participants were satisfied with and enjoyed OY, and 8/13 FB acceptability benchmarks were met. There were no significant differences between groups in minutes of yoga per week. Conclusions: The addition of a FB group to an OY intervention for women who have experienced stillbirth is feasible, although more research is needed to increase its efficacy. Trial registration: NCT04077476. Registered September 4, 2019. Retrospectively registered (https://clinicaltrials.gov/ct2/show/NCT04077476).

What is good grief support? Exploring the actors and actions in social support after traumatic grief.

Social support seems to enhance wellbeing and health in many populations. Conversely, poor social support and loneliness are a social determinant of poor health outcomes and can adversely affect physical, emotional, and mental well-being. Social support is especially important in traumatic grief. However, the ways in which grieving individuals interpret and define social support is not well understood, and little is known about what specific behaviours are perceived as helpful. Using qualitative description and content analysis, this study assessed bereaved individuals' satisfaction of social support in traumatic grief, using four categories of social support as a framework. Findings suggest inadequate satisfaction from professional, familial, and community support. Pets emerged with the most satisfactory ratings. Further, findings suggest that emotional support is the most desired type of support following traumatic loss. Implications for supporting bereaved individuals within and beyond the context of the COVID-19 pandemic are discussed.

Stillbirth: patient-centered psychosocial care.

Evidence-based practice and patient-centered practice are not mutually exclusive clinical ideals. Instead, both styles hold tremendous potential for complementarity in healthcare and should be used to enhance clinical relationships in which caring is humble, mindful, and nuanced. The onus of the responsibility for many decisions about care after stillbirth falls on clinical staff. Yet, even in the dearth of literature exploring standards of care during stillbirth the results can be conflicting. Thus, research in both patient-centered and evidence-based approaches suggest that less emphasis should be placed on the standardization of care; rather, the focus should be on relational caregiving that underscores the uniqueness of each patient and their family, recognizes culture, and encourages affirmative, rather than traumatizing, provider reactions.