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.
D'un style élégant et maîtrisé, Jean-Pierre Gautheur met en mots le deuil, le manque et l'amour, immense et blessé, qui remplissent le coeur de ceux qui ont perdu un être cher.
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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.
To reduce response burden for bereaved children and adolescents, we provide data on the development and psychometric testing of a short form of the Hogan Sibling Inventory of Bereavement (HSIB). The resulting measure of grief symptoms and personal growth was renamed the Hogan Inventory of Bereavement – Short Form (Children and Adolescents; HIB-SF-CA). Psychometric properties were evaluated in a sample of 86 bereaved siblings. Instrument development and validation research design methods were used. Evidence of strong reliability and convergent validity indicates that the 21-item HIB-SF-CA is comparable to the original 46-item HSIB in measuring grief and personal growth in this population.
Parentally bereaved children and adolescents are at risk of developing psychological health problems. Evidence for a correlation between communication and broad measures of psychological health exists in other populations. The aim of this study was to examine associations between family communication and specific aspects of psychological health for children and adolescents following a parent’s death from cancer using parent-proxy and adolescent self-reports. Parent-proxy reports for children and adolescents, and adolescent self-reports for Parent–Adolescent Communication, Strengths and Difficulties Questionnaire, and Prolonged Grief-13 child were analyzed using descriptive statistics and Spearman’s correlation. Parents rated communication as moderate in quality and reported good psychological health for children and adolescents. Adolescent self-reports indicated low-quality communication with their parent and poor psychological health. Significant associations between Parent–Adolescent Communication subscales and Strengths and Difficulties Questionnaire subscales were found for each group. Prolonged grief was associated with emotional problems but not communication for all three groups.
Bereavement care practice guidelines assist in delivering high-quality bereavement care. However, the quality of published guidelines is unknown. A systematic review was conducted to identify and evaluate the quality of the process used to develop bereavement care practice guidelines using the Appraisal of Guidelines for Research and Evaluation (AGREE II) instrument. A keyword search was conducted in MEDLINE-Complete, CINAHL-Complete, Health-Source (Nursing/Academic Edition), Psychology and Behavioral Sciences Collection, and an internet search engine in October 2017. Sixteen guidelines with differing scope and purpose but similar core values were identified from the grey literature and then appraised at high quality (n = 1), moderate quality (n = 4), or low quality (n = 11). The domains "clarity of presentation" and "scope and purpose" achieved the highest scores (mean ± SD 71.0 ± 27.6% and 64.4 ± 37.5%, respectively), while "editorial independence" showed the lowest mean score (9.2 ± 13.3%). While few of the bereavement care practice guidelines met the AGREE II quality standards related to their development process, neither the quality of the content of each guideline nor the in-context application was assessed by the AGREE II instrument. Ongoing development of practice guidelines may benefit from consideration and application of the framework outlined in the AGREE II or similar appraisal instrument.
Background: End-of-life dreams and visions (ELDVs) are prevalent experiences that provide comfort and meaning to dying individuals. Limited research has examined the impact of ELDVs on the bereaved.
Objective: This study aimed to explore differences in self-reported grief for people whose loved ones shared ELDVs and those who did not, and to describe the role of ELDVs in the grieving process.
Design: Mixed-methods cross-sectional survey.
Settings/Subjects: A total of 228 bereaved family caregivers (FCGs) of patients who died while under the care of a comprehensive hospice program were recruited.
Measurements: Demographics and ELDV prevalence were collected. Bereavement was assessed using the Core Bereavement Items (CBI) a validated measure. Impact on grief was also evaluated using an ad hoc tool.
Results: Comfort from dreams significantly related to total CBI score (r = 0.224, p = 0.047) as well as the images and thoughts (r = 0.258, p = 0.025) and acute separation subscales (r = 0.224, p = 0.047). Comfort from dreams had a positive relationship with accepting the reality of loss (r = -0.511, p < 0.001), working through the pain of grief (r = -0.556, p < 0.001), adjusting to the new environment (r = -0.405, p = 0.001), and continuing bonds (r = -0.538, p < 0.001). CBI scores were not significantly different between caregivers who reported loved ones with ELDVs and others. Open-ended responses were thematically analyzed resulting in three emergent themes: comfort, reflection and emotions, and sense-making.
Conclusions: ELDVs' impact extends beyond those experiencing them to bereaved loved ones. Bereaved FCGs report that comforting ELDVs experienced by their dying loved ones influenced their grief process in terms of the Worden's tasks of mourning.
Purpose: This study uses the newly developed Bereaved Cancer Needs Inventory to identify the unmet psychosocial needs of adolescents and young adults who have experienced the death of a parent or sibling to cancer, and to explore the relationship between unmet needs and psychological distress.
Methods: In total, 278 bereaved offspring and 38 bereaved siblings (12–25 years) completed the 58-item Bereaved Cancer Needs Inventory (BCNI) and the Kessler psychological distress scale (K10).
Results: Bereaved offspring reported 27 unmet needs on average (SD = 16.87, range: 0–58); 94% indicated at least one unmet need, with 80% indicating 10 or more needs. Bereaved siblings reported 23 unmet needs on average (SD = 17.30, range: 0–57); 97% indicated at least one unmet need, with 68% indicating 10 or more needs. For both bereaved offspring and siblings, the needs for “support from other young people” and “time out and recreation” were most frequently reported as unmet. Approximately half of all participants reported high to very high levels of psychological distress. There was a significant positive relationship between the number of unmet needs and the psychological distress score on the K10 for both groups.
Conclusions: Bereaved offspring and bereaved siblings report unmet psychosocial needs across many domains, which are associated with their levels of psychological distress. Findings suggest the BCNI may be used by healthcare professionals to identify unmet needs and direct clients to the appropriate services, resources, or support; with the intent to reduce their risk of mental illness and psychological distress.
Objectives Bereavement is associated with negative affective, cognitive, behavioural and physiological responses. However, factors, such as coping, self-efficacy and self-esteem, can buffer negative effects of grief, and can be increased through mutual support interventions, such as shared leisure activities. This study used a non-randomised controlled design to explore the effects of group choir singing on mental health among people who have been bereaved due to cancer.
Methods A total of 58 adults bereaved in the last 5 years who had not started psychological therapy in the last 12 weeks or medication for anxiety or depression in the last month were recruited and elected to join a choir (n=29) or participate in the non-intervention control group (n=29). Joining a choir involved engaging in 90 min weekly singing and social sessions for 12 weeks with a post-intervention assessment at week 24. We used linear mixed effects models adjusted for demographics, health-related variables, musical engagement and time since bereavement to model changes over time between the two groups in symptoms of anxiety, depression, well-being, self-efficacy and self-esteem.
Results Participants who sang in a choir had more stable symptoms of depression and levels of well-being, as well as gradual improvements in their sense of self-efficacy and self-esteem over the 24 weeks. In contrast, those in the control group showed gradual increases in depressive symptoms, reductions in levels of well-being and self-esteem and no improvement in their self-efficacy. These results were independent of all covariates.
Conclusions Weekly group singing could be a promising mutual support intervention for people experiencing grief.
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.
Je partage avec toi un bout de ma vie qui a été très difficile. J'ai perdu ma maman en 2012 et de nombreux proches en 3 ans. J'ai écrit ce livre entre 2016 et début 2019. Je ne parle pas de théorie en tant que thérapeute, je parle en tant qu'être humain qui a eu très bobo à son petit coeur ! Haha ! Je me livre complètement à toi sur les conséquences qu'ont eu ces décès sur : ma vie, ma vision du monde et de LA vie.
Je livre mon intimité, j'espère que ce sera respecté. Car nous sommes tous humains. J'ai revisité ma vie et soigné mon enfant intérieur par le biais de la thérapie et de ce livre. J'ai mis toute mon âme dans ce bouquin ! Le deuil d'une personne chère est pour moi une mort à soi-même. Toutes mes questions existentielles ont eu besoin de réponse. J'étais tellement en colère contre le système, ma famille, les humains, la vie ! À m'en faire mal.
Que le voile de mon ignorance a craqué. Je souhaite qu'à travers ce livre, chacun puisse s'autoriser à se poser des questions sur sa place dans le monde. J'ai éclaté tout mon ancien système de pensée, de croyances, qui n'était en fait pas le mien. C'est fou tout ce que l'on absorbe de notre environnement, sans conscience et qui appartient à notre famille, jusqu'à cet inconscient collectif. Je souhaite transmettre le message qu'après la mort, il y a la vie.
Je me sens chaque jour plus proche de mon essence, j'espère que toi aussi. Et j'espère que ce livre t'inspirera, même juste un petit peu. Mourir pour mieux renaître.
Perinatal loss, including fetal and infant death, is a devastating experience for parents, resulting in long-term adverse physical and psychosocial outcomes. However, little is known about what services might best support grieving parents. We aimed to understand the role of professional bereavement photography in assisting the grieving process of parents who have lost a fetus or infant, by examining the perspectives of bereaved parents, professional photographers, and health care professionals. Twenty semistructured interviews were conducted, and interview transcripts were analyzed using modified grounded theory. Twenty-three individuals participated, including 6 bereaved parents, 8 photographers, and 9 health care professionals. Analyses generated 5 major themes describing ways in which the photographs were valuable to parents: validation of the experience, permission to share, creation of a permanent and tangible legacy, creation of positive memories, and moving forward after the loss. Hospitals should consider incorporation of professional bereavement photography services into palliative care and bereavement programs.
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.
Background: Care teams are increasingly expected to attend to the needs of patient's personal caregivers (e.g., family members). Improving communication among oncologists, patients with advanced cancer, and their personal caregivers might enhance caregivers' experiences of end-of-life (EoL) cancer care and bereavement outcomes.
Objective: To explore the effects of the Values and Options in Cancer Care intervention on caregivers' experiences of EoL care and bereavement outcomes.
Design: We developed a brief behavioral intervention to improve communication among oncologists, patients with advanced cancer, and their personal caregivers. The intervention was designed to help patients/caregivers ask questions, express concerns, and help oncologists respond effectively. We randomly assigned oncologists (and their patients/caregivers) to the intervention or usual care.
Setting/Subjects: Medical oncologists in NY and CA; patients/personal caregivers with advanced cancer.
Measurements: Two months after the patient's death, caregivers completed three instruments assessing their experiences of EoL care. Seven months after the patient's death, caregivers completed the Prolonged Grief Disorder-13 (PG-13; primary prespecified outcome), the Purpose-in-Life scale, and scales assessing mental health function, depression, and anxiety.
Results: The intervention did not significantly improve caregivers' scores on the PG-13 (p = 0.21), mental health function, depression, or anxiety, but it did improve purpose-in-life scores (p = 0.018). Cohen's d (95% confidence interval) for all three experiences of EoL care outcomes were promising, ranging from 0.22 (-0.19 to 0.63) to 0.39 (-0.07 to 0.86) although none was statistically significant.
Conclusion: Preliminary findings show promise that scalable interventions in cancer care settings may improve caregiver experiences with cancer care and some bereavement outcomes.
As digital outlets of expression become increasingly accessible, means of conveying grief and commemorating the deceased have migrated online. Online memorial websites such as UK-based Muchloved.com boasts thousands of Tributes created by the bereaved to remember the deceased. Many of these Tributes sketch out a rough picture of the person commemorated through text detailing their personal lives, professions, hobbies, and accomplishments, as well as photographs capturing intimate moments with family and community, and condolences contributed by family, friends, and community members. This article examines how stories of migration figure in this large pool of digital Tributes. We draw from Moncur and Kirk’s “emergent framework” for the study of digital memorials by analyzing 17 Tributes on MuchLoved.com, which commemorated individuals who, according to these Tributes, migrated from one nation to another. We find that the practices and conventions of memorial-writing to commemorate first-generation immigrants perpetuate narratives of exceptionality.
Objective: To improve understandings of the enablers and barriers to maintaining good quality of life for people dying, caring and grieving in rural areas.
Design and setting: In-depth interviews designed on participatory research principles were held with bereaved carers living in a small community in rural Tasmania. Participants had cared for someone until their death within the 3-year period prior.
Participants: Nineteen participants comprising 18 bereaved former carers and one person with a life-limiting illness, and all but four were over retirement age.
Study aim: To explore experiences of end-of-life care in a rural community.
Results: Participants discussed the challenges they experienced during end-of-life caring, including transport into the city for treatment, and access to basic and specialised services. However, they also reported positive aspects of formal and informal palliative care, and described experiences of personable, expert, flexible and innovative caregiving.
Conclusions: The rural location enabled personalised and innovative expressions of care. This research adds new insight into rural end-of-life palliation, as a complex intersection of supererogation, innovation and place-driven care.
Adaptive regulation of positive and negative affect after the loss of a loved one may foster recovery. In two studies, using similar methods but different samples, we explored the association between positive (i.e., dampening and enhancing) and negative (i.e., rumination) affect regulation strategies and symptoms levels of postloss psychopathology. Study 1 used data from 187 people confronted with the death of a loved one. In study 2, the sample consisted of 134 relatives of long-term missing persons. Participants completed self-reports tapping prolonged grief, depression, posttraumatic stress symptoms, and affect regulation strategies. Hierarchical regression analyses showed that both negative and positive affect regulation strategies explained significant amounts of variance symptom levels in both samples. In line with previous work, our results suggest that negative and positive affect regulation strategies relate to postloss psychopathology. Future research should explore how both affect regulation strategies may adequately be addressed in treatment.