Cet article a été élaboré dans le cadre d’un groupe de travail au sein de l’équipe ressource régionale de soins palliatifs pédiatriques d’Île-de-France Paliped, qui a choisi de mener une réflexion sur l’annonce du décès d’un camarade à des enfants polyhandicapés au sein de leur établissement. Cet écrit expose l’idée que ces enfants peuvent supporter la nouvelle, à condition qu’ils soient soutenus au moment de l’annonce et tout au long de la période où les effets de cette annonce se déploient. C’est ainsi que l’annonce peut être pensée comme le point de départ d’un processus d’appropriation qui se décline jusqu’au temps du deuil. L’enjeu spécifique pour ces enfants tient dans l’ajustement extrême que les professionnels doivent mettre en œuvre pour rester auprès d’eux quand un évènement grave vient bouleverser leur vie. L’objectif de cet article est de partager une déclinaison spécifique de la clinique de l’annonce, pensée comme la clinique de l’ajustement individuel, de la contenance groupale, de l’inscription dans la communauté humaine à travers la souffrance partagée et le souvenir.
We aimed to identify practitioners’ perspectives on current research priorities in grief and bereavement care. Grief and bereavement care providers were invited to participate in a three-phase Delphi study to create expert consensus on the top priorities for grief and bereavement research. A total of 140 participants completed Phase 1, 84 completed Phase 2, and 70 completed Phase 3. These top 10 research priorities form the basis of a practice-based research agenda for grief and bereavement care to enable researchers to respond to key issues in grief and bereavement care that will ultimately improve the lives of bereaved people.
AIMS: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations.
METHODS: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions. Matrices for remaining articles were created and discussed among the team. The levels of evidence of the 9 records were rated from very low to high based on the Grading of Recommendations Assessment, Development, and Evaluation guidelines.
RESULTS: Our initial pool included 1025 articles. After the screening of titles/abstracts, 63 articles were retained for full-text reviews. Evaluated based on the inclusion/exclusion criteria, 9 records met the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model.
CONCLUSIONS: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs.
Online support groups are popular for peer support, particularly for uncommon or stigmatized topics including pregnancy and infant loss. We conducted a randomized, controlled, 6-week feasibility study of three groups: an anonymous BabyCenter.com loss support group, a closed Facebook loss group, or a control group. Intervention arm mothers were asked to sign on to their support sites for 6 weeks. Participants completed regular surveys, text message surveys after each log-in, and a final semistructured phone interview. Thirty women were randomized to each arm of the study. Women reported preference for anonymous groups and found it empowering to support others, although many noted an emotional cost to reading postings. Tracking usage online was a major issue despite multiple strategies to collect these data. This pilot demonstrated feasibility of a randomized trial for online perinatal support but noted a critical need for more reliable methods to track usage.
BACKGROUND: Equipping midwives and nurses with confidence to provide bereavement care to parents who have experienced a perinatal loss is vital and impacts on the efficacy of the care received by grieving parents. In education and clinical practice environments there are shortages of bereavement care questionnaires specifically designed to measure midwives' and nurses' confidence and psychosocial factors that impact on their confidence to provide bereavement care.
AIM: The purpose of the study was to develop a valid and reliable perinatal bereavement care confidence scale (PBCCS).
METHODS: The PBCCS was developed in 4 phases. Phase 1: Questionnaire development, 44 questions were formulated from the literature. Phase 2: Face and content validation of the PBCCS by an Expert Panel. Phase 3: A pilot study was conducted and included 10 cognitive pre-testing interviews and test-retest reliability assessment with a cohort of 26 midwives. Phase 4: Construct validity was assessed using factor analysis with 277 midwives and nurses. In order to avoid confusion with terminologies, the term midwife was used for both nurses and midwives who provided care to bereaved parents and participated in the study. Internal consistency reliability measurement was assessed with Cronbach's alpha. Ethical approval of the study was obtained from four maternity hospitals in Ireland.
RESULTS: The PBCCS has 43 items. Bereavement care knowledge (15 items, 3 sub-scales). Bereavement care skills (9 items, 2 sub-scales). Self-awareness (8 items, 2 sub-scales). Organisational support (11 items, 2 subscales). The internal consistency reliabilities ranged from 0.753 to 0.871 except for one subscale 0.663.
CONCLUSIONS: The PBCCS is a valid and reliable tool with good psychometric properties which can be used to measure midwives' confidence and the psychosocial factors thatimpact on their confidence to provide bereavement care.
Rouge, jeune femme mystérieuse et désenchantée, cherche à aider sa grand-mère Rose, qui vient de perdre son mari. Afin de rompre le mutisme de la vieille dame, elle recourt à son tandem, un élément indissociable de leur vie et de leurs souvenirs.
Background: Despite technological innovations and continuous improvement in evidence-based treatments, mortality in the intensive care unit (ICU) remains high. Consequently, a large group of family members may be in need of, and could benefit from, bereavement follow-up support.
Aims and Objectives: To explore the elements, organization, and evaluation of ICU bereavement services in European countries. Specific objectives were to investigate: (a) the model of bereavement follow-up services (elements of support), (b) the workforce model (organization of staff), and (c) the evaluation model (evaluation strategies).
Design: This was a cross-sectional survey of conference delegates.
Methods: A paper-and-pen questionnaire, including a cover letter assuring the respondents of anonymity and confidentiality, was distributed to 250 delegates during the opening ceremony of the 2017 European federation of Critical Care Nurses associations Congress in Belfast. The questionnaire was developed from a previously validated tool describing bereavement care practices in ICUs, including questions about the content and organization of bereavement follow-up services. Frequencies were calculated using yes/no questions, and content analysis was applied in additional free-text comments.
Results: We received 85 responses from publicly employed nurses, mainly in mixed adult ICUs. Respondents were 48 (56.5%) bedside nurses, and the remaining respondents represented clinical nurse specialists, researchers, managers, or academic nurses. Bereavement follow up had existed for about 1 to 15 years. Important follow-up elements were: viewing the deceased in the unit, 77 (90.6%); providing follow-up information, 67 (79.8%); sending a letter of sympathy, 17 (20%); and calling the family to arrange a meeting, 27 (31%).
Conclusions: Bereavement follow up is common but variable in European ICUs. We recommend the development, implementation, and evaluation of evidence-based, but culture-specific, bereavement follow-up guidelines for European ICUs.
Relevance to clinical practice: More critical care nurses are realizing the need for bereavement follow-up guidelines. This paper provides an overview of common elements that might be considered.
L’auteure partage ses expériences d’accompagnatrice dans le cadre d’un atelier créatif d’accompagnement de deuil, ou elle a choisi de proposer de faire un linceul, une enveloppe symbolique sous la forme du dernier habit pour accompagner le défunt. Dans sa plus simple expression, on pourrait dire que la création voire la créativité est l’aptitude à concevoir et à vivre une réalité autrement. L’homme s’exprime depuis la nuit des temps par ses mains. Faire son deuil, créer une trace, faire un objet symbolique de ses mains, dans un temps ritualisé en soi, toutes ces actions sont remarquablement présentes dans toutes les civilisations. Puisque nous sommes au moment de "faire", en lien avec notre histoire singulière avec le défunt, le linceul permet d’habiller, accompagner, protéger le disparu. Il permet aussi de vivre ce moment de lien symbolique, seul ou en le partageant avec le groupe familial, amical. Il permet aussi de s’approprier le moment des obsèques plus intimement, le cercueil n’est plus seulement un cercueil. Le cercueil permet de porter le linceul créé par les siens pour vêtir le défunt une dernière fois.
Enduring the death of a family member during emerging adulthood is associated with intense grief. In total, 15 adults between the ages of 18–32 were interviewed about their experiences. Results indicated emerging adults experience a range of mixed emotions after losing a parent, face unique challenges related to their developmental stage, and tend to be resilient moving forward. Emerging adults need opportunities to engage with others experiencing grief related to parental death and may benefit from specialized support groups that address the developmental challenges inherent among this population.
This review gives an overview of treatments used to concurrently reduce symptoms of posttraumatic stress disorder (PTSD) and prolonged grief disorder (PGD). For purposes of this review, emphasis is placed on locating and comparing literature on exposure- and nonexposure-based treatments. Across 14 studies, the overall findings suggest that treatments are generally effective in treating PTSD and PGD concurrently and that treatments incorporating exposure-based components performed similarly to those without exposure-based components. However, methodological limitations preclude the ability to draw firm conclusions about the added impact of exposure-based components in traumatic grief treatment. Future directions for research on concurrent treatments for PTSD and PGD are discussed.
BACKGROUND: Usually, parents remain at the hospital for two or three days after a stillbirth in Sweden, and the routine until recently has been to place the baby in a refrigerator during the night. A device, the Cubitus Baby, a specially designed cot with cooling blocks, was implemented in all 47 delivery wards during 2013 and 2014.
AIM: To investigate the midwives' experiences of using the device when supporting parents after the stillbirth.
METHOD: Questionnaires were completed by midwives, and a single open-ended question was analysed using content analysis.
FINDINGS: 154 midwives responded. Four categories were identified, with two subgroups in each category: Feelings of dignity (Satisfactory feelings in working with grief; Design and function), Caring cooling (The cooling function; A cold baby), Time for farewell (Time together; Time to make your own choice) and Satisfying feelings for the parents (The parents and Cubitus Baby; The possibility for bonding).
CONCLUSIONS: The midwives found that this practice provided a more dignified and worthwhile form of care. There is no need to separate the stillborn baby from the parents during their stay at the hospital. In modern perinatal palliative care, it is not justifiable to place a stillborn baby in a refrigerator.
Veterinary professionals are recognized as an important source of support for many veterinary clients, particularly during companion animal euthanasia and end-of-life care. While many veterinary professionals recognize the importance of their role, many also report feeling unsure about what methods of support are most effective. Furthermore, few evidence-based guidelines currently exist to inform veterinary professionals on the support of grieving clients. To begin bridging this gap, this study qualitatively explored how veterinary professionals currently report supporting grieving clients before, during, and after companion animal euthanasia. Findings suggest that veterinary participants in this study strive to be meaningful sources of support for grieving clients and employ an array of support practice to do so. However, opportunities exist for veterinary professionals to better explore clients' needs, expectations, and feelings as they relate to companion animal euthanasia, including offering more grief-related resources and access to professional counseling services.
BACKGROUND: The death of a child is regarded as one of the most devastating events for a family. Families are reliant on nurses to not only provide end-of-life care but also to support and care for grieving families in a way that is sensitive to their cultural and religious needs and preferences.
AIMS: The aim of this study was to explore the perceived impact and influence of cultural diversity on how neonatal and paediatric intensive care nurses care for Muslim families before and after the death of infants/children.
DESIGN: A qualitative descriptive approach was used in this study, conducted in Saudi Arabia.
METHODS: Semi-structured interviews were used to gather data from a convenience sample of registered nurses working in neonatal and paediatric intensive care, with experience in providing end-of-life care. Interviews were conducted between July and November, 2018. Interviews were audio-recorded and transcribed for analysis.
RESULTS: Thirteen registered nurses participated; all were born overseas, identified with various faiths and spoke English in the workplace. A respect for diversity and care of the family was prioritized yet impacted by communication challenges. Caring and respect was demonstrated by facilitating important cultural and religious practices important in the Muslim faith. Self-care was identified as important, transcending the culturally diverse nature of the nursing workforce.
CONCLUSIONS: Significant challenges exist for a culturally diverse nursing workforce in providing care to a Saudi Muslim population of infants/children and families, before and after a death. Their overriding commitment to respect for others, and an openness to cultural diversity and difference, aided in overcoming the inherent challenges in providing culturally sensitive end-of-life care that meets the needs of Muslim families. These findings provide valuable insights for intensive care clinicians in other countries to address challenges associated with cultural diversity.
Background: The high burden of bereavement in sub-Saharan Africa is largely attributable to HIV, cancer, and other non-communicable diseases. However, interventions to improve grief and bereavement are rare. Given high rates of mortality in the context of weak health systems, community lay members are well placed to provide peer bereavement support. The 9-cell bereavement tool was developed in Zimbabwe to improve community members' capacity to support the bereaved. This study aims to determine the feasibility of implementing the 9-cell bereavement tool and recruitment to experimental evaluation.
Methods/design: This feasibility cluster randomized trial with embedded qualitative interviews will be conducted in two comparable neighborhoods in Zimbabwe. Community leaders from each neighborhood will identify 25 potential community lay bereavement supporters, each of whom will recruit 2–3 bereaved community members into the trial. The intervention will be randomly allocated to one community, and the second community will form a wait-list control (n = 75 in each community cluster). Recruitment is estimated to take place over 3 weeks. Measures at T0 (baseline, i.e., week 0), T1 (midline, i.e., week 14 or 3 months post-baseline) and T2 (endline, i.e., week 27 or 3 months post-midline) will address mental health, social support, and levels of grief per individual. Qualitative data will describe lay supporters’ views of intervention training and delivery, and participants’ experience of bereavement support.
Discussion: This is the first documented trial evaluating a bereavement intervention in sub-Saharan Africa. Recruitment, retention, and measurement data will determine the feasibility of a full trial.
Trial registration: ISRCTN, ISRCTN16484746. Registered 6 February 2018.
Background: Many organizations provide support to people affected by suicide-related behavior, for example, those bereaved by suicide, those who have attempted suicide, and their informal carers. However, evidence regarding how well used, and acceptable, these resources are is lacking. Aims: To investigate the views about and experiences with support and resources of people with lived experience of suicide bereavement, suicide attempt, or caring.
Method: The study was conducted in Queensland, Australia. In total, 175 people completed the survey. Data were analyzed using SPSS Statistics 22.
Results: Participants found resources helpful and user-friendly, but many had never searched for support, did not know it was available, or felt no better after using it. Respondents who had attempted suicide were more likely to look for resources, but less likely to feel better after using them and endorsed more barriers to accessing support.
Limitations: This study used a convenience sample of individuals living in Queensland, was biased toward help-seeking populations, and included mostly women, and therefore it was not representative.
Conclusion: Support and resources that are more flexible and accessible, and are offered in a more proactive manner could improve the user experiences of people affected by suicide-related behavior.
People bereaved by suicide have an increased risk of suicide and suicide attempt, yet report receiving less support than people bereaved by other sudden deaths. Reductions in support may contribute to suicide risk, yet their nature is unclear. We explored the impact of suicide bereavement on the interpersonal relationships of young adults in the UK using an online survey to collect qualitative data. We conducted thematic analysis of free-text responses from 499 adults to questions capturing the impact of bereavement on relationships with partners, close friends, close family, extended family, and other contacts. We identified four main themes describing the changes in relationships following the suicide: (1) Social discomfort over the death (stigma and taboo; painfulness for self or others to discuss; socially prescribed grief reactions); (2) social withdrawal (loss of social confidence; withdrawal as a coping mechanism); (3) shared bereavement experience creating closeness and avoidance; (4) attachments influenced by fear of further losses (overprotectiveness towards others; avoiding attachments as protective). These findings contribute to understanding deficits in support and pathways to suicidality after suicide bereavement. Such disrupted attachments add to the burden of grief and could be addressed by public education on how to support those bereaved by suicide.
While bereavement camps serve as a support for children, this study examines a therapeutic recreation-based camp for families who have lost a child. The study triangulated documents, researcher reflection, and staff interviews to highlight the themes of Searching & Finding, Getting to Know, Finding the Balance, and Joining. Developing opportunistically through internal and external factors, the camp's evolution represents a closing of the loop, from supporting families of living children to also supporting the families of children who have died. Understanding the camp's evolution may facilitate other programs by highlighting the challenges in developing the program and the lessons learned.
Though the adjustment of bereaved children is increasingly investigated through quantitative studies, their intimate representations regarding the loss of their parent remain unknown. This qualitative study aims at exploring how they give meaning to this experience. Nondirective interviews with bereaved children were conducted and submitted to an interpretative phenomenological analysis. Fourteen children (8 boys, 6 girls, mean age = 8.5 years) were recruited. Seven major themes depicting their grief experience were identified. The importance of the surviving parent is critically highlighted. Findings suggest that the remaining parent could become a fundamental actor in providing grief support for the bereaved children.
Researchers have yet to explore suicide survivors activities in social organizations, which was the present purpose. I studied an Israeli organization, Path to Life, by interviewing 16 members, attending 11 events, and examining media, online, and print information. Although mainly comprised of activists whose loss occurred in civilian circumstances, frame analysis revealed that the organization emphasizes connections between suicide and esteemed military-related death. By relying on a legitimate model of dealing with death, the activists provided meaning to suicide and promoted a sociocultural change through drawing attention to a silenced death, upgrading the suicide victims' status, and enfranchising survivors' grief.