Entretien avec trois professionnelles du funéraire, et en particulier de la crémation, à propos des rites mis en oeuvre dans le cadre de leur intervention. Quel est l'impact de l'accomplissement de rites funéraires dans le déroulement du deuil ? Des directives du défunt sur le devenir de son propre corps et la conduite de la cérémonie ? Du devenir des cendres ?
L'action du Collectif revêt deux formes. La première est un réseau d'accompagnement qui, alerté par les services funéraires municipaux dès qu'ils ont connaissance des funérailles d'une personne isolée, se mobilise selon les disponibilités de chacun pour être présent. L'objectif étant que nul ne soit inhumé sans une présence citoyenne et fraternelle. La deuxième consiste en l'organisation d'une cérémonie annuelle sous la présidence du maire. Il s'agit de rendre hommage à toutes les personnes accompagnées l'année précédente.
Les auteurs décrivent les différents aspects du processus de deuil périnatal afin de faciliter l'accompagnement des familles touchées par ce drame. Ils citent notamment les risques psychopathologiques qui peuvent découler de cet événement bouleversant l'ordre des générations, tels que la dépression, les troubles anxieux ou le stress post-traumatique.
BACKGROUND: The global COVID-19 pandemic has left health and social care systems facing the challenge of supporting large numbers of bereaved people in difficult and unprecedented social conditions. Previous reviews have not comprehensively synthesised the evidence on the response of health and social care systems to mass bereavement events.
AIM: To synthesise the evidence regarding system-level responses to mass bereavement events, including natural and human-made disasters as well as pandemics, to inform service provision and policy during the COVID-19 pandemic and beyond.
DESIGN: A rapid systematic review was conducted, with narrative synthesis. The review protocol was registered prospectively (www.crd.york.ac.uk/prospero, CRD 42020180723).
DATA SOURCES: MEDLINE, Global Health, PsycINFO and Scopus databases were searched for studies published between 2000 and 2020. Reference lists were screened for further relevant publications, and citation tracking was performed.
RESULTS: Six studies were included reporting on system responses to mass bereavement following human-made and natural disasters, involving a range of individual and group-based support initiatives. Positive impacts were reported, but study quality was generally low and reliant on data from retrospective evaluation designs. Key features of service delivery were identified: a proactive outreach approach, centrally organised but locally delivered interventions, event-specific professional competencies and an emphasis on psycho-educational content.
CONCLUSION: Despite the limitations in the quantity and quality of the evidence base, consistent messages are identified for bereavement support provision during the pandemic. High quality primary studies are needed to ensure service improvement in the current crisis and to guide future disaster response efforts.
Dying is a natural part of life; however, death is often a fearful, frightening event. Dying in the midst of the COVID-19 pandemic presents challenges that magnify normative fears and may interfere with a healthy grieving process. To maintain a resilient spirit among those who are at risk of losing a loved one or who have lost a family member to COVID-19, it is important that they be provided with the necessary contextually and culturally appropriate skills and resources to facilitate healing in the face of hardship and uncertainty.
OBJECTIVE: This qualitative study sought to obtain feedback from stakeholder cancer caregivers and bereaved family members on the implementation of bereavement risk screening in oncology.
METHODS: Semi-structured interviews were conducted with 38 family members of patients with advanced cancer (n=12) and bereaved family members (n=26) on when and how to effectively implement bereavement risk screening. Data was analyzed using thematic analysis.
RESULTS: Many participants indicated that they would be open to completing a self-report screening measure before and after the patient's death. Several suggested screening at multiple timepoints and the importance of follow-up. Participants viewed screening as an opportunity to connect to psychosocial support.
CONCLUSIONS: The findings suggest that family members appear supportive of sensitively-approached bereavement risk screening before and after a patient's death as an important component of quality psychosocial care. To optimize implementation, bereavement risk screening would involve screening at multiple timepoints and include follow-up. Findings suggest standardized risk screening using a brief, validated self-report tool would be a pragmatic approach to increasing access to bereavement care.
BACKGROUND: When death ends a life, the impact of caring for person who suffered a period of illness or disease continues for significant others who are left to grieve. They should be offered support to avoid complicated grief. This can be provided in different ways and individually or in groups. This study aims to describe significant others' experiences of participation in bereavement groups.
METHODS: Ten bereavement groups that each met five times offered support for the significant others of deceased loved ones who had been cared for by a palliative-care team. After the five meetings, the grieving members (n = 46) completed written comments about the role of the groups; they also commented one year after participating (n = 39). Comments were analyzed with qualitative content analysis with a directed approach using the theory of a good death according to the 6S’s: self-image, self-determination, social relationships, symptom control, synthesis and summation, and surrender.
RESULTS: Bereavement groups were found to be a source for alleviating grief for some significant others, but not all experienced relief. Moreover, grief was found to persist during participation. Another finding involved the impact of the role of the palliative home-care team on bereavement support. To evaluate the experience of participating in a bereavement group, the use the 6S's as a model was a strength of the analysis. Bereavement groups could enhance the self and offer relief from grief. Participation was described as social relationships that offered a sense of coherence and understanding in grief. The effects of participation were more meaningful close to the loss and could lose efficacy over time. Bereavement support provided before a loved one's death was seen as valuable.
CONCLUSION: Overall, the bereavement groups eased the grief of significant others close to the death of their loved one. However, moving forward, several of the significant others were not sure that their participation eased their grief. To identify persons who may remain in a state of complicated grief, a routine of planned contacts with the bereaved should begin before death and be followed up later than six months after the death of a loved one.
BACKGROUND: Childhood bereavement after sibling death is common, but often unrecognized. The psychosomatic and socioeconomic outcomes of bereaved children can be compromised if appropriate care is unavailable during the formative years leading into adulthood.
AIM: This review aims to describe the methods, structures and procedures of bereavement care for children and adolescents after the loss of a sibling, and the impact on the families benefiting from these interventions.
DESIGN: A systematic review without restriction on study design was conducted.
DATA SOURCES: Four databases (MEDLINE, PsycINFO, EMBASE, Cochrane Library) were searched for articles published from 2000 to 2019. The search was conducted according to PRISMA guidelines and the protocol is registered on PROSPERO under number CRD42019124675. Articles were assessed against eligibility criteria by both authors, and quality was appraised using CASP checklists and NHMRC grading guidelines.
RESULTS: Twenty-three studies met inclusion criteria. Bereavement care was most often accessed by children ages 6-18 who lost a sibling to cancer 6-12 months prior. The interventions were typically group sessions or weekend camps, run predominantly by unpaid staff from a variety of backgrounds. Some staff members received priori specific training. Grief education is taught through mediated discussion and bereavement-centered activities balanced with playful and relaxed activities. Several services have effectuated evaluations of their interventions, and preliminary results show a positive effect for families.
CONCLUSION: Existing literature most likely gives an incomplete picture of appropriate childhood bereavement care, and many interventions possibly remain unpublished or published in other non-scientific sources. An effective response to childhood grief would involve collaboration between medical resources and community services, reinforced through the development of outreach and training programs.
Bereavement care is best conceptualized as a preventive model of care. It is an integral component of palliative care where support for the family begins at the time of diagnosis and continues beyond the death of the patient. Even though grief is a normal response to loss, the death of a loved one is believed to be the most powerful stressor in everyday life with the potential to cause great distress in all those closely associated with the deceased. In neuro-oncology, where patients often face limited prognoses, knowledge about approaches to bereavement support is particularly important. Despite this, research into the experience of bereaved caregivers is limited. As such, an opportunity exists to identify ways to help family caregivers not only cope with the death of their loved one but also to help families prepare for the death ahead of time. In this article, we offer guidelines about how best to support family caregivers before and after the death of the patient, drawing on the palliative care and bereavement literature.
Purpose: The aim of this study was to gain more insight into the psychosocial well-being of the recently bereaved spouses who took care of their partners with cancer.
Method: A qualitative study was developed, taking a phenomenological approach. Eleven former caregivers and spouses of patients who died of cancer at, or after, the age of 64, participated in individual in-depth interviews. Only caregivers who were bereaved for a minimum of three months and maximum of one year were interviewed. The analysis of the data was based on the Qualitative Analysis Guide of Leuven.
Results: The first moments of bereavement included feelings of disbelief, regret and relief. A feeling of being overwhelmed during this time was reported by some, others sought distraction from their grief. Loneliness, emotional fluctuations and a sense of appreciation for the support of loved ones were dominant themes. Also, gratitude and the importance of consolation played a role in the participants' well-being. When participants addressed the matter of moving forward in life, most explained how they wanted to keep the memories of their partner alive while rebuilding their lives.
Conclusions: The present study offers insight into the experiences of the bereaved spousal caregiver and highlights the need of social support during the bereavement period. All participants expressed loss-oriented and restoration-oriented coping strategies. Also, loneliness is considered a dominant feeling throughout the bereavement period. Social contact can ease these feelings of loneliness through providing either distraction or possibilities to share the burden. This paper emphasized the importance of improving access to healthcare professionals during bereavement.
Objective: To describe the landscape of digital resources available for grief and bereavement, and to explore cultural variations through the analysis of patterns in three languages with a multinational repartition (English, French and Spanish).
Methods: For each language, websites were collected through a systematized approach and classified according to their category (governmental, health, educational, social media, conventional media, spiritual), their country of origin, and the type of support they offered (practical support, services, peer support, informational support, resources).
Results: A total of 2587 websites (English: 1003; French 678; Spanish: 906) were analyzed. Cultural variations were observed both for the websites’ categories and the types of support. Half of the websites presented at least one type of support, informational support being the most prevalent, followed by practical support. English websites presented significantly more support than Spanish websites, with French websites in between.
Practice implications: By using an extensive survey, our results allow for a general mapping of online websites that is comparable across languages, but also unveil digital dynamics unknown to date. These results further the multicultural understanding of digital support for grief and bereavement, propose an innovative and operational typology for online support and raise awareness of the current support landscape.
Context: Keepsakes are a relatively unexplored form of bereavement support that is frequently provided as part of the 3 Wishes Project (3WP). The 3WP is a palliative care intervention in which individualized wishes are implemented in the adult intensive care unit for dying patients and their families.
Objectives: We aimed to characterize and enumerate the keepsakes that were created as part of the 3WP, and to understand their value from the perspective of bereaved family members.
Methods: We performed a secondary analysis of family interviews during a multi-center study on the 3WP and characterized all wishes that involved keepsakes. Sixty interviews with family members regarding the 3WP were re-analyzed using qualitative analysis to identify substantive themes related to keepsakes.
Results: Of 730 patients, 345 (47%) received keepsakes as part of their participation in 3WP. The majority of keepsakes were either tangible items that served as reminders of the patient’s presence (thumbprints, locks of hair) or technology-assisted items (photographs, word clouds). The median cost per keepsake wish was $8.50 (IQR $2.00-$25.00). Qualitative analysis revealed two major themes: 1) Keepsakes are tangible items that are highly valued by family members, and 2) The creation of the keepsake with clinical staff is valued and viewed as a gesture of compassion.
Conclusion: Keepsakes are common wishes that clinicians in the ICU are able to provide and sometimes co-create with families when patients are dying. Both the offering to create the keepsake and receipt of the final product are perceived by family members as helpful.
Context: Cancer is the leading cause of nonaccidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalize grief experiences and reduce parents' isolation. It is available free of charge.
Objectives: This project evaluated the acceptability, relevance, emotional impact, and usefulness of By My Side.
Design: Bereaved parents and health care professionals (HCPs) provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyze the data.
Setting/Participants: We mailed a study invitation and evaluation questionnaire to parents and HCPs who ordered a copy of By My Side.
Results: About 24 bereaved parents and seven HCPs provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was just right. About 75% of parents reported that the book made them feel that their reactions to their child's death were normal and/or appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and HCPs reported that the book provided useful information about grief. About 83.4% of parents and 85.7% of HCPs would recommend it to others.
Conclusion: By My Side was acceptable and useful to bereaved parents and HCPs. Results suggest that peer support in written form may help normalize aspects of grief and comfort parents bereaved by childhood cancer.
Although there is an increased need for delivery of bereavement care, many health care providers in acute care hospital settings feel inadequately prepared to deliver quality grief support, have lack of time, and have inexperience in provision of bereavement care. As a result, although families would like health care providers to offer bereavement support, they are inadequately trained and susceptible to burnout, resulting in families not having their needs met. The purpose of this qualitative study was to uncover the social process occurring in a bereavement education workshop titled "How to Care, What to Say" offered to health care providers. The goal of the workshop was to improve delivery of care for the dying and their family by providing holistic care to the family before, during, and after the death of a loved one. Past grief workshop participants who cared for the bereaved were interviewed, and data were analyzed and synthesized using constructivist grounded theory. Individual interviews and focus group data revealed participants' perceptions, learnings, and potential integration of the workshop into practice. The overarching theory of providing bereavement care that emerged from the data is "a relational process of understanding knowledge, self-awareness, moral responsibilities, and advancing grief competencies of providing holistic grief support."
BACKGROUND: Bereavement support is a key component of palliative care, with different types of support recommended according to need. Previous reviews have typically focused on specialised interventions and have not considered more generic forms of support, drawing on different research methodologies.
AIM: To review the quantitative and qualitative evidence on the effectiveness and impact of interventions and services providing support for adults bereaved through advanced illness.
DESIGN: A mixed-methods systematic review was conducted, with narrative synthesis of quantitative results and thematic synthesis of qualitative results. The review protocol is published in PROSPERO ( www.crd.york.ac.uk/prospero , CRD42016043530).
DATA SOURCES: The databases MEDLINE, Embase, PsycINFO, CINAHL and Social Policy and Practice were searched from 1990 to March 2019. Studies were included which reported evaluation results of bereavement interventions, following screening by two independent researchers. Study quality was assessed using GATE checklists.
RESULTS: A total of 31 studies were included, reporting on bereavement support groups, psychological and counselling interventions and a mix of other forms of support. Improvements in study outcomes were commonly reported, but the quality of the quantitative evidence was generally poor or mixed. Three main impacts were identified in the qualitative evidence, which also varied in quality: 'loss and grief resolution', 'sense of mastery and moving ahead' and 'social support'.
CONCLUSION: Conclusions on effectiveness are limited by small sample sizes and heterogeneity in study populations, models of care and outcomes. The qualitative evidence suggests several cross-cutting benefits and helps explain the impact mechanisms and contextual factors that are integral to the support.
BACKGROUND: There is a reliance on voluntary organisations in healthcare. Education is necessary to keep up-to-date with best practice. The authors' aim was to identify education priorities of voluntary organisations that support parents who experience pregnancy/perinatal loss, to inform the development of an education day.
METHOD: A modified Delphi study was undertaken to identify education needs. There were two Delphi rounds, inclusive of free text, where voluntary group experts reflected on responses in order to develop a consensus among the group.
RESULTS: There were 12 responses to Round One and seven responses to Round Two. From a list of 10 subjects, Round One identified 64 sub-topics, which were then determined as essential, desirable or not relevant in Round Two. The final 55 sub-topics were included in the education day.
CONCLUSION: This study identified educational needs of voluntary organisations. A standardised approach was necessary to develop an education day that is responsive to their learning needs.
Traditional Chinese art practices such as brush painting and calligraphy are thought to promote self-development through holistically engaging both physical and mental health. This pilot study investigated the beneficial effects of a community-based self-help group incorporating Chinese art practices as a culturally adapted bereavement intervention. Twenty-six Chinese parents aged over 49 years and who had lost their only child participated in a 20-session Chinese brush painting group over a 6-month period. Ten bereaved parents from the same community who did not participate in the art course but received living support were recruited as a control group. Compared with the control group, the art practice group exhibited a pre-post intervention effect in terms of promoting positive affect and preventing deterioration of prolonged grief symptoms, particularly through the improvement of accessory grief symptoms (e.g., "emotional numbness due to the loss", and "feeling that life is unfulfilling, empty or meaningless after the loss"). No effect was found on negative affect. These findings indicate that a culturally adapted community-based art group may be an effective means of improving grief-related health.
While great strides have been made in improving childhood mortality, millions of children die each year with significant health-related suffering. More than 98% of these children live in low- and middle-income countries (LMICs). Efforts have been made to increase access to pediatric palliative care (PPC) services to address this suffering in LMICs through policy measures, educational initiatives, and access to essential medicines. However, a core component of high-quality PPC that has been relatively neglected in LMICs is grief and bereavement support for parents after the death of their child. This paper reviews the current literature on parental grief and bereavement in LMICs. This includes describing bereavement research in high-income countries (HICs), including its definition, adverse effect upon parents, and supportive interventions, followed by a review of the literature on health-related grief and bereavement in LMICs, specifically around: perinatal death, infant mortality, infectious disease, interventions used, and perceived need. More research is needed in grief and bereavement of parents in LMICs to provide them with the support they deserve within their specific cultural, social, and religious context. Additionally, these efforts in LMICs will help advance the field of parental grief and bereavement research as a whole.