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Background: The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need. However, little is known about implementing bereavement programs in low-and middle-income countries (LMICs). Here, we describe the implementation of a bereavement program for parents whose children died due to cancer or other catastrophic illnesses. Methods: We conducted a retrospective analysis to describe the implementation of a hospital-based End of Life (EoL) care and bereavement program. This program was developed in several stages, including an assessment of bereaved families, development program guidelines, staff training, piloting of the program, refinement, and standardization. The program was developed between 2019 and 2021 in a nonprofit, teaching hospital and referral center for southwestern Colombia. Results: Several tools were developed as key components of the bereavement program: a virtual bereavement course; guidance for EoL and bereavement communication and care, memory making, and follow-up calls; a condolence letter template, and group support workshops. A total of 956 healthcare professionals were trained, 258 follow-up calls to bereaved parents were made, 150 individual psychological follow-ups to parents with complicated grief occurred, 79 condolence letters were sent, and 10 support group workshops were carried out. Challenges were identified and overcome, such as limited resources and staff, and cultural perceptions of death. In 2021, this program received an award by the hospital as the Best Strategy to Humanize Healthcare. Conclusions: This study highlights the feasibility of developing and implementing EoL and bereavement care programs for parents and families within hospitals in LMICs. Lack of resources, staff, and training are some of the identified challenges to implementation. Utilizing methodological tools allows us to identify facilitator factors and deliverable outcomes of our EoL and bereavement program. This model provides a valuable framework for resource-limited settings. [ABSTRACT FROM AUTHOR]

Bereaved mothers with a deep bond to their sick child experience a distinct grieving process. This study delved into how Korean bereaved mothers come to terms with their child's death from cancer by exploring their bereavement and adaptation processes. In-depth interviews with 15 bereaved mothers yielded 14 subthemes within three overarching themes. These themes included the diverse coping mechanisms employed by the participants, attribution of meaning to their children's deaths, and personal growth intertwined with their experiences. These findings underscore the critical need for professional support to assist these mothers in their search for meaning and coping with the loss, particularly in the context of the unique cultural context of Korea. Understanding cultural variations is crucial for expanding the knowledge base in this field and advancing culturally informed interventions to support mothers who grapple with the loss of a child due to cancer across varied cultural settings. [ABSTRACT FROM AUTHOR]

Nurses can find pediatric postmortem care to be daunting due to the emotional burden associated with performing the task. There is little education and preparation provided to nurses regarding their own potential emotional reactions and the needs of family members. Postmortem care is extremely emotional for the child's family, but it can help facilitate the grieving process. The act of postmortem care promotes a soothing environment after the trauma of the pronouncement of death. Regardless of the child's age, parents and caregivers are provided with the opportunity to clean the body, making the child look as much like themselves as possible. This promotes dignity and a sense of meaning for those around them. Allowing parents to perform this care in a devoted and familiar way can be instrumental in helping them feel that they gave their child love and care. Caregivers find comfort in performing a bath or dressing a child as they have done since the child was born. Nursing support is valuable in keeping parents physically safe and emotionally supported as they grieve. Nursing is also instrumental in assisting with the care and explaining the expected body changes that will occur. The literature review obtained through CINHAL and PubMed highlighted a lack of content on this topic. Clinical experiences and anecdotes confirmed the impact and clinical implications for pediatric nursing. [ABSTRACT FROM AUTHOR]

Purpose: This qualitative study aimed to gather insights into the experiences of older adults after losing their only child and explore meaningful life needs as a basis for social interventions. Methods: We conducted individual face-to-face interviews with 29 participants from 10 communities in Changsha, Hunan Province, China. Interviews were transcribed verbatim and then analysed using the inductive category development of conventional content analysis. Results: The experience of losing an only child was devastating and linked with a helpless life in old age. The analysis generated the following three themes encompassing their lived experiences and needs: afraid of getting sick, lying on the edge of misery and surrounded by loneliness. Conclusions: Losing an only child triggered older adults' feelings of being misunderstood, disconnected and hopeless. They had an increased likelihood of lacking more on love and belonging, esteem and self-actualization needs than their physiologic and safety needs. Findings from our study will raise awareness on this vulnerable group and help design intervention programmes targeting the specific needs of this neglected segment of the population. [ABSTRACT FROM AUTHOR]

Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence. Methods: The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence. Results: The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence. Conclusions: The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations. [ABSTRACT FROM AUTHOR]

Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. Results: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. Conclusion: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families. [ABSTRACT FROM AUTHOR]

Background: U.S. cost-effectiveness recommendations suggest that analyses should include all costs and effects relevant to the decision problem [1]. However, in many diseases, including spinal muscular atrophy (SMA), few studies have evaluated bereaved family outcomes after a child has died, neglecting potential impacts on their health-related quality of life (HRQoL), work productivity, and mental health. Additionally, grief-related outcomes are rarely included in economic evaluations. This manuscript outlines the protocol of a study that will estimate the HRQoL, work functioning, and mental health of bereaved parents of children with SMA type 1 to determine how outcomes vary based on parent's sex and the time since a child's death. Methods: This study will involve two phases. In Phase 1, we will conduct a literature review to identify prior research that has measured how parental grief impacts HRQoL, work productivity, and mental health. We will also interview four bereaved parents of children with SMA type 1, stratified by parent sex and time since their child's death, and analyze findings using a thematic analysis. In Phase 2, we will develop a survey draft based on Phase 1 findings. Parents bereaved from SMA type 1 will review our survey draft and we will revise the survey based on their feedback. We will send a cross-sectional survey to approximately 880 parents bereaved from SMA type 1. We will analyze findings from the survey to investigate whether the severity of grief symptoms is correlated with HRQoL, productivity, depression and anxiety symptom severity. We will also evaluate whether the mean scores of grief and each of the outcomes vary significantly when stratified by parent sex and the time since the child's death. Discussion: Our results will provide preliminary information on how parental grief can impact HRQoL, productivity, and mental health outcomes over time. Increasing the availability of family outcomes data will potentially assist organizations performing health economic evaluations, such as the Institute of Clinical and Economic Review (ICER) in the U.S. This research will also help to inform the development of future economic guidelines on this topic. [ABSTRACT FROM AUTHOR]

The death of a loved one represents one of the most distressing and potentially traumatic life events in childhood and adolescence. Grief reactions in youth are influenced by ongoing developmental processes and manifest differently depending on the child's age and developmental stage. These grief-related processes unfold within youths' caregiving context, as children and adolescents rely heavily on the adults in their environment to navigate and cope with the death of a loved one. Despite the field's increasing recognition of the potential for maladaptive grief reactions to impede functioning over time, few longitudinal research studies on childhood grief currently exist. In this article, we will (a) provide a brief overview of the childhood bereavement literature; (b) review the new DSM-5 and ICD-11 Prolonged Grief Disorder diagnostic criteria through a developmentally-informed lens; (c) describe how grief reactions manifest in children and adolescents of different ages through the lenses of multidimensional grief theory and relational developmental systems theory; (d) highlight key moderating factors that may influence grief in youth, and (e) discuss a primary moderating factor, the caregiving environment, and the potential mechanisms through which caregivers influence children's grief. [ABSTRACT FROM AUTHOR]

Environmental crises such as climate change threaten the realisation of sexual and reproductive health and rights. In this scoping review, we examine the evidence for the relationship between environmental crises and child marriage. We conducted a search of Google Scholar, Scopus and MedLine from their origin to 4th June 2021 for both peer-reviewed academic literature and 'grey' literature. A total of 24 relevant articles were identified, including both quantitative and qualitative work. while there are limitations of the current evidence base such as its narrow geographical scope, we find that environmental crises worsen known drivers of child marriage, pushing families to marry their daughters early through loss of assets and opportunities for income generation, displacement of people from their homes, educational disruption, and the creation of settings in which sexual violence and the fear of sexual violence increase. Local socio-cultural contexts such as bride price or dowry practices further shape how these factors affect child marriage. Given many of the areas with the highest current rates of child marriage face the gravest environmental threats, action to tackle child marriage must take account of the link identified in this review. [ABSTRACT FROM AUTHOR]

Background: During the COVID-19 pandemic, many children and young people have experienced the death of close family members, whilst also facing unprecedented disruption to their lives. This study aimed to investigate the experiences and support needs of bereaved children and young people from the perspective of their parents and guardians. Methods: We analysed cross-sectional qualitative free-text data from a survey of adults bereaved in the UK during the pandemic. Participants were recruited via media, social media, national associations and community/charitable organisations. Thematic analysis was conducted on free text data collected from parent/guardian participants in response to a survey question on the bereavement experiences and support needs of their children. Results: Free-text data from 104 parent/guardian participants was included. Three main themes were identified: the pandemic-related challenges and struggles experienced by children and young people; family support and coping; and support from schools and services. Pandemic-challenges include the impacts of being separated from the relative prior to their death, isolation from peers and other family members, and disruption to daily routines and wider support networks. Examples were given of effective family coping and communication, but also of difficulties relating to parental grief and children's existing mental health problems. Schools and bereavement organisations' provision of specialist support was valued, but there was evidence of unmet need, with some participants reporting a lack of access to specialist grief or mental health support. Conclusion: Children and young people have faced additional strains and challenges associated with pandemic bereavement. We recommend resources and initiatives that facilitate supportive communication within family and school settings, adequate resourcing of school and community-based specialist bereavement/mental health services, and increased information and signposting to the support that is available. [ABSTRACT FROM AUTHOR]

Purpose: This phenomenological analysis was conducted to explore the experiences of college student volunteers in the field of pediatric palliative care. Methods: In-depth interviews were conducted with nine study participants who had experience volunteering with children receiving pediatric palliative care. The study analysis was conducted using the Colaizzi method, a rigorous qualitative research method, to develop "intra-group" comparisons among the study participants. Results: Through an analysis of the data, 51 themes, 18 theme clusters, and five main categories were derived. The results confirmed that the experience of university student volunteers in pediatric palliative care can be summarized as "awareness of the role of a volunteer," "difficulties encountered while volunteering," "efforts to overcome the difficulties of volunteer work," "personal reflection," and "awareness of life and death." Conclusion: The results of this study can be used as a practical guide for the effective management of volunteers in the pediatric palliative care setting. [ABSTRACT FROM AUTHOR]

Background: This study examined care needs and utilisation of psychosocial support services among parents of children who had received specialist paediatric palliative care, as well as the relationship between need fulfilment and grief. Possible differences between parents of children who died of cancer versus a non-cancer disease were explored. Methods: This exploratory study, conducted in two specialist paediatric palliative care facilities, included parents who had lost a child within a period of 0.5 to 8 years before this investigation. From the bereavement perspective, parents reported their needs during paediatric palliative care using the Family Inventory of Needs – Peadiatric II (FIN-PED II). Utilisation of psychosocial support services during paediatric palliative care and after the child's death, as well as potential barriers to accessing services were assessed. Grief symptoms were measured using the Inventory of Complicated Grief - German Version (ICG-D). Results: Overall, 56 of 157 approached parents participated in the study. Mean time interval after the child's death was 3.2 years. Of the 17 FIN-PED II needs, 13 needs were reported to be very/extremely important to more than 75% of the parents each. Highest ranked needs related to asking questions at any time (100%), sincere care for the child (100%), and information about changes in the child's condition (98%). The highest ranked unmet needs related to hope (61%), interactions with siblings (41–42%), and trust in the health care system (39%). Comparisons showed no significant differences between parents whose child died of cancer (n = 18) versus a non-cancer disease (n = 38). During paediatric palliative care, 61% of the parents had accessed at least one psychosocial support service and 84% had done so after the child's death. The most prominent barriers for accessing services were sufficient informal support (38%), no subjective need (23%), and lack of time (20%). Overall, 52% of the parents showed noticeable symptoms for complicated grief (ICG-D > 25). A higher level of grief symptoms significantly correlated with a lower fulfilment of the need to say goodbye to the child (p =.042) with a medium correlational effect. Conclusions: Our findings may help to guide health care professionals in their assessment of parental needs and provision of support to parents during paediatric palliative care. [ABSTRACT FROM AUTHOR]

Background: This study examined care needs and utilisation of psychosocial support services among parents of children who had received specialist paediatric palliative care, as well as the relationship between need fulfilment and grief. Possible differences between parents of children who died of cancer versus a non-cancer disease were explored. Methods: This exploratory study, conducted in two specialist paediatric palliative care facilities, included parents who had lost a child within a period of 0.5 to 8 years before this investigation. From the bereavement perspective, parents reported their needs during paediatric palliative care using the Family Inventory of Needs – Peadiatric II (FIN-PED II). Utilisation of psychosocial support services during paediatric palliative care and after the child's death, as well as potential barriers to accessing services were assessed. Grief symptoms were measured using the Inventory of Complicated Grief - German Version (ICG-D). Results: Overall, 56 of 157 approached parents participated in the study. Mean time interval after the child's death was 3.2 years. Of the 17 FIN-PED II needs, 13 needs were reported to be very/extremely important to more than 75% of the parents each. Highest ranked needs related to asking questions at any time (100%), sincere care for the child (100%), and information about changes in the child's condition (98%). The highest ranked unmet needs related to hope (61%), interactions with siblings (41–42%), and trust in the health care system (39%). Comparisons showed no significant differences between parents whose child died of cancer (n = 18) versus a non-cancer disease (n = 38). During paediatric palliative care, 61% of the parents had accessed at least one psychosocial support service and 84% had done so after the child's death. The most prominent barriers for accessing services were sufficient informal support (38%), no subjective need (23%), and lack of time (20%). Overall, 52% of the parents showed noticeable symptoms for complicated grief (ICG-D > 25). A higher level of grief symptoms significantly correlated with a lower fulfilment of the need to say goodbye to the child (p =.042) with a medium correlational effect. Conclusions: Our findings may help to guide health care professionals in their assessment of parental needs and provision of support to parents during paediatric palliative care. [ABSTRACT FROM AUTHOR]

Background: The greater proportion of children with a life-limiting condition (LLC) and their families want to remain at home as much as possible. Building capability in paediatric palliative care (PPC) for generalist health and social care professionals in nonmetropolitan regions through the Quality of Care Collaborative Australia (QuoCCA) has improved access to palliative care for families, regardless of where they live. Aim: To understand the experience of families whose child has received specialist PPC, to ensure future service capability development is informed by lived experience. Design: A retrospective, descriptive study in which parents participated in a semi-structured telephone interview guided by Discovery Interview methodology. Inductive thematic analysis identified the major learnings from participants. Participants: Parents caring for a child referred to the specialist PPC service, who received a pop-up visit and whose child is stable or who are more than 6months bereaved. Results: Eleven parents (n=9 mothers; n=2 fathers) of children with an LLC (n=5) or whose child had died (n=6) participated in an interview. The overarching themes and subthemes were as follows: (1) burden of suffering, in which parents described grieving for the life once anticipated, confronting many life transitions and seeking quality of life for their child and (2) umbrella of support, in which parents built partnerships with professional support, activated a network of care around their family and sought responses to their whole family’s needs. Conclusion: Parents caring for a child with an LLC described significant personal, familial, social and existential adjustments. This study integrates a relational learning approach with QuoCCA education grounded in the relationships between children, families and professionals. Learning from lived experience in PPC education enhances the preparedness of generalist health and social care professionals to join a child and their family throughout their various life transitions and facilitates the goal to remain at home within their community for as long as possible. Education in PPC is an imperative component of service models, enabling regional services to gain confidence and capability in the context of a dying child and their family, empowered and informed through the voice of the family. [ABSTRACT FROM AUTHOR]

Background: Effective communication in support of clinical decision-making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) that can diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment; however, the potential implementation of the LDT may make effective communication challenging since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e. those with a catastrophic diagnosis. Objective: We solicited the perspectives of parents of children with difficult-to-treat brain cancer on communication preferences surrounding the potential implementation of the LDT in standard care using deliberative stakeholder consultations. Methods: Eight bereaved parents of children who succumbed to difficult-to-treat brain cancer, and four parents of children currently undergoing treatment for similar cancers attended separate small-group deliberative consultations – a stakeholder engagement method that enables the co-creation of recommendations following the consideration of competing arguments and diverse opinions of parents with different experiences. In the small-group consultations (Phase I), parents discussed four questions about potential communication issues that may arise with the LDT in practice. In Phase II, a total of five parents from both stakeholder groups (4 bereaved and 1 in current treatment) attended a consultation, known as the 'mixed' consultation, with the purpose of co-developing concrete recommendations for implementation of the LDT. Results: Explaining the risks, benefits, and accuracy of the LDT were considered essential to parents. Once an LDT-based diagnosis/prognosis can be made, parents valued honesty, empathy, and clarity in communication. Parents also requested that all results and treatment options be presented to them in measured doses, and in an unbiased manner over the course of several meetings. This communication strategy allowed sufficient time to understand and accept the diagnosis/prognosis, particularly if it was catastrophic. Continuous access to the appropriate psychological and social support or counselling at and post-diagnosis was also strongly recommended. Conclusions: Deliberants co-created family-centered recommendations surrounding communication issues of the LDT, providing guidance to pediatric oncologists that could implement the test in practice. [ABSTRACT FROM AUTHOR]

Background and Method: There is an absence of research on the prevalence of bereavement during early childhood and the relationship between childhood bereavement and socioeconomic status (SES) and this poses a challenge in both understanding and supporting children's bereavement experiences. Using longitudinal data from the Growing Up in Scotland study, which tracks the lives of three nationally representative cohorts of children, this paper aimed to address these gaps in research. It specifically drew on data from Birth Cohort 1 to document the recorded bereavements of 2,815 children who completed all 8 sweeps of data collection, from age 10 months to 10 years. Findings: The study found that 50.8% of all children are bereaved of a parent, sibling, grandparent or other close family member by age 8 and this rises to 62% by age 10. The most common death experienced was that of a grandparent or other close relative. The study also found that children born into the lowest income households are at greater risk of being bereaved of a parent or sibling than those born into the highest income households. Discussion and Conclusion: Given the prevalence of childhood bereavement and its relationship with disadvantage, this paper argues that there is an important need to understand bereavement as a universal issue that is affected by the social conditions in which a child becomes bereaved, as well as an individual experience potentially requiring specialist support. This paper thus seeks to position childhood bereavement more firmly within the public health approach to palliative and bereavement care discourse and contends that doing so provides a unique and comprehensive opportunity to better understand and holistically respond to the experience of bereavement during childhood. [ABSTRACT FROM AUTHOR]

The study was an evaluation of Trauma-Focused Cognitive-Behavioral Therapy (TF-CBT; Cohen et al. 2017) with child-caregiver dyads who experienced the death of a loved one from terrorism, using a hybrid efficacy/effectiveness design in which there were no required minimum symptom levels. Forty children ages 4–17 years old whose fathers died in the line of duty on 9/11/2001 and their mothers participated in an RCT comparing TF-CBT and Client-Centered Therapy (CCT). At baseline, mothers' PTSD, depression, and prolonged grief symptoms were highly elevated, whereas children's were at normative levels. Using intent-to-treat analysis, condition-by-time interactions showed significantly greater symptom reduction for mothers receiving CBT than those receiving CCT. For the children, both treatments led to significant symptom improvements. [ABSTRACT FROM AUTHOR]

Context: Losing a child is the most burdensome event parents can experience involving risks of developing anxiety and depression.Objectives: To investigate anxiety and depression in bereaved parents during their child's life-limiting illness and imminent death and three to five years after the loss to target future interventions.Methods: A Danish nationwide cross-sectional questionnaire survey. From 2012 to 2014, a register-based study identified causes of deaths of 951 children aged zero to 18 years. Potential palliative diagnoses were classified according to previously used classification. A total of 402 families were included. A modified version of the self-administered questionnaire "To lose a child" was used. Non-response surveys identified reasons for lack of response.Results: In all, 136 mothers and 57 fathers completed a questionnaire, representing parents of 152 children (38%). Sixty-five percent of mothers and 63% of fathers reported moderate-to-severe anxiety during the child's illness. However, three to five years after their loss anxiety had decreased markedly. Thirty-five percent of mothers and 39% of fathers reported moderate-to-severe depression during the child's illness; three to five years after the loss they were suffering equivalently from depression. The Center for Epidemiologic Studies Depression Scale indicated that severe depression was significantly associated with lower education and being unmarried.Conclusion: The reporting of anxiety during the child's illness and prolonged depression in bereaved parents three to five years after the loss indicates a potential need for psychological interventions. In the process of implementing specialized pediatric palliative care in Denmark, our findings should be considered for future treatment programs. [ABSTRACT FROM AUTHOR]

The article focuses on the definition of advance care planning, paediatric palliative care with diagnostic criteria. It discusses the increase of life-limiting conditions in children especially in ethnic minority areas, types of care dependent on goals including disease-modifying care, intensive care interventions.

The article discusses a developmental approach in discussing death with children. It is mentioned that children may turn to media portrayals of death and dying if death is not talked about by adults around them. The child's age and his or her past experiences with death are two factors that have been found to affect children's concepts of death and their accuracy. Four components of a death concept that children understand with direct or indirect death experiences are also discussed.

Purpose: To explore the lived experiences and personal impact of stillbirth on bereaved parents. Methods: Semi-structured in-depth interviews analysed by Interpretative Phenomenological Analysis (IPA) on a purposive sample of parents of twelve babies born following fetal death at a tertiary university maternity hospital in Ireland with a birth rate of c8,500 per annum and a stillbirth rate of 4.6/1000. Results: Stillbirth had a profound and enduring impact on bereaved parents. Four superordinate themes relating to the human impact of stillbirth emerged from the data: maintaining hope, importance of the personhood of the baby, protective care and relationships (personal and professional). Bereaved parents recalled in vivid detail their experiences of care following diagnosis of stillbirth and their subsequent care. The time between diagnosis of a life-limiting anomaly or stillbirth and delivery is highlighted as important for parents as they find meaning in their loss. Conclusions: The impact of stillbirth on bereaved parents is immense and how parents are cared for is recalled in precise detail as they revisit their experience. Building on existing literature, these data bring to light the depth of personal experience and impact of stillbirth for parents and provides medical professionals with valuable insights to inform their care of bereaved parents and the importance of clear and sensitive communication. [ABSTRACT FROM AUTHOR]

Background: Ninety-eight percent of children needing palliative care live in low- and middle-income countries (LMICs), and almost half of them live in Africa. In contrast to the abundance of data on populations in high income countries, the current data on populations in LMICs is woefully inadequate. This study aims to identify and summarize the published literature on the need, accessibility, quality, and models for palliative care for children in LMICs. Methods: A scoping review was performed following the method of Arksey and O'Malley. Systematic searches were conducted on PubMed and Google Scholar using the main keywords, 'children AND palliative care OR terminal care OR hospice OR end of life AND developing countries OR LMICs.' Additional publications were obtained by handsearching. Papers were only included if they reported on the need, accessibility, quality, and models for palliative care for children in LMICs. Results: Fifteen papers met the inclusion criteria for review. Of these, 10 assessed need, seven examined availability and/or accessibility, one assessed quality, and one examined the models. We found an urgent need for palliative care, particularly in the training for health workers and improving poor availability and/or accessibility to palliative care in terms of factors such as medication and bereavement support. The best practice models demonstrated feasibility and sustainability through cooperation with governments and community organizations. The quality of pain management and emotional support was lower in LMICs compared to HICs. Conclusion: Although we found limited evidence in this review, we identified common challenges such as the need for further training for health workers and greater availability of opioid analgesics. While efforts to change the current systems and laws applying to children in LMICs are important, we should also tackle underlying factors including the need to raise awareness about palliative care in public health and improve the accuracy of data collection. [ABSTRACT FROM AUTHOR]

Although there is some evidence of an association between loss of a sibling in adulthood and subsequent mortality, there have been no previous studies in which investigators have examined whether the death of a sibling in childhood is associated with adult mortality using total population data. Data on a national cohort born in Sweden in 1973-1982 (n = 717,723) were prospectively collected from the Cause of Death Register until 2013 (i.e., from the ages of 18 years to 31-40 years). Cox proportional hazards models were used to analyze the association between sibling loss during childhood and death in young adulthood. After adjustment for sociodemographic confounders and parental psychosocial covariates, the hazard ratio for all-cause mortality in bereaved siblings versus nonbereaved siblings was 1.39 (95% confidence interval: 1.14, 1.69). Risks were more pronounced for those who lost a noninfant sibling (i.e., >1 year of age) (hazard ratio = 1.53, 95% confidence interval: 1.18,1.95) and those who lost a sibling in adolescence (i.e., between the ages of 12 and 18 years) (hazard ratio = 1.71, 95% confidence interval: 1.24, 2.35). Excess mortality risk was found for concordant causes of death (i.e., siblings dying from the same causes) but not for discordant causes. [ABSTRACT FROM AUTHOR]

Background: considerable proportion of the population experiences major life disruptions after losing a loved one to suicide. Social stigma attached to suicide survivors adds to complications occurring in the course of suicide bereavement. Despite its known risks, stigma related to suicide survivors has been sparsely investigated. Methods: We conducted a systematic literature search in PubMed, Web of Science, PsycInfo and PsyArticles, of studies indexed up through August 2015. Articles were eligible for inclusion if they addressed experiences of stigma in suicide survivors, compared them to other bereavement populations, or investigated stigmatizing attitudes within the public. The search was restricted to English-language studies. Results: 25 records matched inclusion criteria. Study designs were heterogeneous, making comparisons difficult. Results demonstrated that suicide survivors experience stigma in the form of shame, blame, and avoidance. Suicide survivors showed higher levels of stigma than natural death survivors. Stigma was linked to concealment of the death, social withdrawal, reduced psychological and somatic functioning, and grief difficulties. Only one study investigated stigmatizing attitudes towards suicide survivors among the general population. Limitations: Internal and external validity of the studies was restricted by a lack of valid measures and selection bias. Conclusions: More methodologically sound research is needed to understand the impact of stigma on suicide survivors’ grief trajectories and to separate it from other grief aspects. Clinicians and grief-counselors as well as the public should be educated about the persistent stigma experienced by suicide survivors. [ABSTRACT FROM AUTHOR]

Background: Multiple losses experienced by children is a topic on which little research has previously been completed. Therefore, a specific definition of multiple losses is unavailable. Multiple losses are traumatic for children and result in the need for intervention and support with respect to grief, loss and bereavement issues. The main goal of this study was to determine the prevalence of multiple losses children who had experienced this from birth to 18 years of age in the National District Hospital in Bloemfontein. Method: A literature search was carried out to define the concept of multiple losses experienced by children appropriate to the South African context. Thereafter, a descriptive study with an analytical component was used to gather information on multiple losses. Structured interviews with the parents or caretakers of the children at the National District Hospital were conducted by the researchers by means of a questionnaire. The interviews were conducted in English or Afrikaans. Results: A total of 62 interviews were performed with the parents or caregivers. Multiple losses, defined here as the loss of three or more personal, interpersonal or environmental assets, were experienced by 69% of these children (95% confidence interval: 57–79%). The majority of losses experienced occurred in the interpersonal (87%) and environmental (82%) categories. The death of a family member took place in 61% of cases. Unemployment of a parent, with its consequences, was reported in 63% of cases. Conclusion: The criteria used to define multiple losses in this study were adequate and appropriate for this study population. The prevalence of multiple losses in children in the National District Hospital in Bloemfontein was 69.4%. This figure warrants the need for support and bereavement counselling for children to prevent long-term problems with relationships and adaptation within society. [ABSTRACT FROM PUBLISHER]

When a service member is injured or dies in a combat zone, the consequences for his or her family can be profound and long-lasting. Visible, physical battlefield injuries often require families to adapt to long and stressful rounds of treatment and rehabilitation, and they can leave the service member with permanent disabilities that mean new roles for everyone in the family. Invisible injuries, both physical and psychological, including traumatic brain injury and combatrelated stress disorders, are often not diagnosed until many months after a service member returns from war (if they are diagnosed at all-many sufferers never seek treatment). They can alter a service member's behavior and personality in ways that make parenting difficult and reverberate throughout the family. And a parent's death in combat not only brings immediate grief but can also mean that survivors lose their very identity as a military family when they must move away from their supportive military community. Sifting through the evidence on both military and civilian families, Allison Holmes, Paula Rauch, and Stephen Cozza analyze, in turn, how visible injuries, traumatic brain injuries, stress disorders, and death affect parents' mental health, parenting capacity, and family organization; they also discuss the community resources that can help families in each situation. They note that most current services focus on the needs of injured service members rather than those of their families. Through seven concrete recommendations, they call for a greater emphasis on family-focused care that supports resilience and positive adaptation for all members of military families who are struggling with a service member's injury or death. [ABSTRACT FROM AUTHOR]

The article presents several personal narratives of parents including Janelle and Jason Myers-Benner, Vicki and Peter Brown, and Maureen Lilly speaking about the effect of death of their child on their life with opening of charities, writing poems or starting foundations.

The article describes the grief of parents whose child has a mental illness. To be helpful to those who are parents of a mentally ill son or daughter and to those who counsel these parents, this article brings together some of what is known about parental grief and highlights the necessity of addressing it appropriately. If normal grief as a response to mental illness is not recognized in parents, then many of them are being misunderstood and misaddressed at a core level. Over the past few decades a growing and respected fund of knowledge and research has been accumulated on chronically ill children and the needs of their families. These families face many extraordinary tasks and bear many heavy burdens, not the least of which is their grief. Every parent is unique in his or her grief, and personality differences as well as previous experiences with loss affect the experience of mourning. Guilt is present in any grief experience but is exaggerated for parents by their heightened sense of responsibility for the well-being of a child. In addition, grief changes people, and so in the midst of their depression and despair both parents face adjusting to living with a changed spouse.

Context: Children with complex chronic conditions (CCCs) have high morbidity and mortality. While these children often receive palliative care services, little is known about parental preparedness for their child's end of life (EOL).Objectives: This study aimed to elucidate aspects important to preparedness at EOL among bereaved parents of children with CCCs.Methods: In this cross-sectional study, parents of children who received care at Boston Children's Hospital and died between 2006 and 2015 completed 21 open-response items querying communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Additional demographic data were extracted from the child's medical record. An iterative multistage thematic analysis of responses was utilized to identify key contexts, conditions, and themes pertaining to preparedness.Results: One hundred ten of 114 parents responded to open-ended items; 63% (n = 69) had children with congenital or central nervous system progressive primary conditions for a median of 7.5 years (IQR 0.8-18.1) before death. Seventy-one percent (n = 78/110) had palliative care involvement and 65% (n = 69/106) completed advance care planning. Parents described preparedness as a complex concept that extended beyond "readiness" for their child's death. Three domains emerged that contributed to parents' lack of preparedness: 1) chronic illness experiences; 2) pretense of preparedness; and 3) circumstances and emotions surrounding their child's death.Conclusions: Most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond "readiness." More research is needed to identify supportive elements among parents facing their child's EOL. [ABSTRACT FROM AUTHOR]

Background: While there is no doubt that parental intimate partner homicide is associated with strong grief and post-traumatic stress reactions among the children who have been bereaved, there is little in-depth insight into how children and young people see and describe their circumstances and needs. Objective: Our aim was to shed light on children's and young people's perspectives on their life after parental intimate partner homicide. In particular, we were interested in how they experienced their living arrangements, social environment, and general well-being. Method: We conducted semi-structured interviews with 23 children and young people (8–24 years old; 15 females and eight males) who had been younger than 18 years when one of their parents killed the other (21 children lost their mother, two children lost their father). We used thematic analysis to synthesize the findings. Results: While most participants were fairly content with themselves and their living arrangements, they also expressed substantial and persistent difficulties, including distress, conflicts between family members, and feelings of unsafety. Most importantly, children's self-image, their perspectives on their biological parents, and their views on their broader (family) environment varied considerably from participant to participant, and also between siblings. Conclusions: It is unlikely that straightforward guidelines can be given with regard to where the children should live after parental homicide, or whether they should be in contact with the perpetrating parent. Rather, this study's findings underline the need to explore children's individual viewpoints carefully during decision-making processes. [ABSTRACT FROM AUTHOR]

Background: While there is no doubt that parental intimate partner homicide is associated with strong grief and post-traumatic stress reactions among the children who have been bereaved, there is little in-depth insight into how children and young people see and describe their circumstances and needs. Objective: Our aim was to shed light on children's and young people's perspectives on their life after parental intimate partner homicide. In particular, we were interested in how they experienced their living arrangements, social environment, and general well-being. Method: We conducted semi-structured interviews with 23 children and young people (8–24 years old; 15 females and eight males) who had been younger than 18 years when one of their parents killed the other (21 children lost their mother, two children lost their father). We used thematic analysis to synthesize the findings. Results: While most participants were fairly content with themselves and their living arrangements, they also expressed substantial and persistent difficulties, including distress, conflicts between family members, and feelings of unsafety. Most importantly, children's self-image, their perspectives on their biological parents, and their views on their broader (family) environment varied considerably from participant to participant, and also between siblings. Conclusions: It is unlikely that straightforward guidelines can be given with regard to where the children should live after parental homicide, or whether they should be in contact with the perpetrating parent. Rather, this study's findings underline the need to explore children's individual viewpoints carefully during decision-making processes. [ABSTRACT FROM AUTHOR]