Huguette Le Gall, accompagnante JALMALV 35, évoque les demandes d'accompagnement de deuil lorsque la situation est atypique. Une fratrie qui n'a pas fait le deuil d'un frère qui s'est suicidé il y a 30 ans, une autre qui pleure un sportif qui n'est jamais revenu d'une expédition, autant de situations qu'il faut comprendre et accompagner avec des rites funéraires mémoriaux.
Cet ouvrage aborde la question délicate des frères et soeurs d'enfant gravement malade ou atteint d'un handicap. Des membres de fratries témoignent de leur vécu et des émotions qui les traversent. En parallèle, des experts apportent des pistes de réflexion afin de mieux répondre aux besoins affectifs et relationnels de ces enfants.
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likely gives an incomplete picture of appropriate childhood bereavement care, and many interventions possibly remain unpublished or published in other non-scientific sources.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.
Background: Research on what children wished they had done differently after their sibling's death has not been reported.
Objective: Examine what children wished they had/had not done, and their coping after a sibling's neonatal/pediatric intensive care unit/emergency department (NICU/PICU/ED) death.
Design: Qualitative data are part of a longitudinal mixed methods study of 6- to 18-year-olds interviewed at 2, 4, 6, and 13 months after a sibling's death.
Setting/Subjects: Ninety-five school-aged children and 37 adolescents (58% female; 30% Hispanic, 50% black, 20% white).
Measurements: Children responded to three open-ended questions: Thinking about your sibling's death, are there things you wish you (1) had done? (2) had not done? (3) What do you do to deal with your sibling's death? Conventional content analysis procedures were used.
Results: Children wished they had spent more time, talked and played more with their sibling, saved their sibling, taken care of their sibling more, and been able to see their sibling grow up. They wished they had not been mean/yelled at their sibling, complained/argued with mother about their sibling, and kept their feelings inside. Children coped by talking with family, friends, and the deceased; playing, reading, watching TV; avoiding thoughts about and remembering their sibling; crying, keeping calm, praying; living for their sibling. Resuming their usual activities, trying to be happy, and laughing also helped children cope.
Conclusions: Children commented more about what they wish they had done (n = 317) and less about what they wish they had not done (n = 107). Children talked to others and tried resuming usual activities to cope.
Siblings of children with serious illness often experience psychosocial distress during and after there sibling's illness. Their psychosocial well-being may not receive adequat focus due to their sibling's illness. This Fast Fact discusses sibling emotions and identify effective ways clinicians can support them. See Fast Fact #47 and #138 for information about the developmental stages for how children conceptualize death and illness.
Lucie a quatre ans de moins que Camille, sa soeur chérie. Elles ont perdu leur père et elles s'adorent. Camille a un cancer du pancréas, rare, fulgurant, elle meurt. C'est une conversation d'amour déchirant les souvenirs heureux, le cauchemar, puis la chute. Lucie sera sauvée par la bienveillance d'une association d'aide au deuil pour les jeunes, une résurrection.
Cela fait trois ans que Matthieu n'a pas vu sa famille, depuis qu'il a claqué la porte de la maison, le jour de ses 18 ans. Il n'a pas répondu aux appels de sa mère, a évité de donner des nouvelles. Il vit de petits boulots avec sa compagne Emma.
Sa tante, Grazia, lui apprend que sa mère est morte d'un cancer foudroyant. Il décide alors de rentrer pour l'enterrement. Mais cela se complique lorsqu'il découvre que sa mère, Bianca Fois, a tout prévu pour son inhumation en Sardaigne, dans le caveau familial : c'est lui, Matthieu, qui doit aller là-bas, avec son frère et sa soeur, des jumeaux de 11 ans, Gavi et Lena, avec lesquels il a été élevé mais qu'il ne connaît plus et dont il a des choses à se faire pardonner.
Ce livre raconte le deuil de trois adolescents qui devront apprendre à mieux se connaître pour traverser cette épreuve et celles du passé.
Une fratrie de trois enfants (5, 8 et 9 ans) dialogue dans sa chambre de ce qu'elle vit. Les enfants sont orphelins de père, leur mère est malheureuse et le grand frère veut aller observer la nuit des étoiles l'été prochain. Sur plusieurs mois, leur relation, leurs dialogues montrent la surmontée du deuil.
La réflexion proposée ici sur la question de la mort dans la fratrie confrontée au handicap et à la maladie, est née de l'articulation de mes recherches cliniques sur la manière dont le handicap ou la maladie peut transformer les liens fraternels, et de ma pratique de psychologue en CAMSP (centre d'action médico-sociale précoce). Il sera question ici non pas d'évoquer la mort réelle d'un frère, mais plutôt d'explorer le fantasme de mort, en partant d'une situation clinique. Un détour par un exposé théorique sur le déploiement de ce fantasme au sein du lien fraternel ordinaire permettra de comprendre ce qui peut se jouer dans les fratries comprenant un enfant en situation de handicap.
Ce chapitre montre que la question de la mort impliquant une personne en situation de handicap pose fondamentalement la question des représentations du handicap et interroge la manière dont on parvient, plus ou moins facilement, à penser le sujet en situation de handicap spécifiquement, et les enfants plus généralement, comme des êtres pensants et appréhendant, à leur manière, la réalité et/ou la perspective de la mort d'un proche et/ou celle de leur propre mort.
[Extrait de l'intro.]
Virginie et Joann partent en vacances à la montagne avec leurs parents. Sur le chemin des vacances, la famille s'arrête à l'hôpital pour rendre visite à leur grand-père qui est très malade et qui va bientôt mourir. Perdus en montagne, les enfants partent à la recherche de réponses à leurs questions sur la mort, la disparition...
Mon petit trésor, ce livre est pour toi. Ne l'oublions pas, tu as eu une soeur, et elle restera à jamais dans nos coeurs. Tu ne pourras pas grandir à ses côtés, mais ce livre nous permettra de nous la rappeler. Ceci est son cadeau : regarde autour de toi, une luciole t'émerveillera.
OBJECTIVES: To assess the availability and efficacy of interventions open to adolescents and young adults (AYAs; 15-25 years) bereaved by a parent's or sibling's cancer.
METHODS: A systematic review of peer-reviewed literature on interventions available to AYAs bereaved by a parent's or sibling's cancer was conducted through searches of six online databases (PsycINFO, Medline, Scopus, Embase, SWAB and Web of Science Core Collection).
RESULTS: Database and reference searches yielded 2985 articles, 40 of which were included in the review. Twenty-two interventions were identified that were available for bereaved young people. However, only three were specific to young people bereaved by familial cancer, and none were specific to AYAs. Interventions primarily provided opportunities for participants to have fun, share their experiences and/or memorialise the deceased; psychoeducation about bereavement, grief and coping was less common. Only six interventions had been satisfactorily evaluated, and no intervention targeted or analysed data for AYAs separately. Overall, some evidence suggested that interventions (especially those that were theoretically grounded) had positive effects for bereaved young people. However, benefits were inconsistently evidenced in participants' self-reports and often only applied to subgroups of participants (eg, older youths and those with better psychological well-being at baseline).
CONCLUSIONS: Considering the very limited number of interventions specific to bereavement by familial cancer and the lack of interventions targeting AYAs specifically, it is unclear whether currently available interventions would benefit this population. The population of AYAs bereaved by familial cancer is clearly under-serviced; further development and evaluation of interventions is needed.
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.
OBJECTIVE: To describe children's anxiety, depression, behaviors, and school performance at 2-13 months after sibling neonatal/pediatric intensive care unit (NICU/PICU) or emergency department (ED) death and compare these outcomes by child age, sex, race/ethnicity, whether the child saw their sibling in the NICU/PICU/ED, and attended the sibling's funeral.
STUDY DESIGN: Children in 71 families were recruited for this longitudinal study from 4 children's hospitals and 14 other Florida hospitals. Children rated anxiety (Spence Children's Anxiety Scale) and depression (Children's Depression Inventory); parents rated child behaviors (Child Behavior Checklist) and reported school performance (detentions, suspensions, requested parent-teacher meetings) at 2, 4, 6, and 13 months post-sibling death. Analyses included repeated measures-ANOVA, t-tests, and 1-way ANOVA.
RESULTS: In total, 132 children and 96 parents participated. More children were female (58%), black (50%), and school-age (72%). Of the children, 43% had elevated anxiety and 6% had elevated depression over 13 months post-sibling death. Child-rated anxiety was higher for girls and black vs white children. Child-rated anxiety and depression were lower if they saw their sibling in the NICU/PICU/ED before and/or after the death, and/or attended the funeral. Teens were more withdrawn than school-age children at all time points. Children who did not see their deceased sibling in the NICU/PICU/ED after death had more requests for parent-teacher conferences.
CONCLUSIONS: Children's anxiety was more common than depression, especially in girls and black children. Children who saw their siblings in the NICU/PICU/ED before/after death and/or attended funeral services had lower anxiety and depression over the first 13 months after sibling death.
The aim of this nationwide survey was to explore, based on an open-ended question, cancer-bereaved siblings’ advice to peers with a brother or sister with cancer. Half of the advice related to being with the ill sibling and cherishing the time together. Other advice related to the value of communicating about the situation, letting go of guilt, and living life as usual. The results highlight the importance of health care professionals, family, and others facilitating for siblings to spend time together and communicate openly.
Studies have found that sibling loss is associated with an increased risk of death from external causes (i.e. suicides, accidents and homicides). Increased psychiatric health problems following bereavement could underlie such an association. We studied the influence of sibling loss during childhood on psychiatric care in young adulthood, adjusting for psychosocial covariates shared by siblings in childhood. A national cohort born in Sweden in 1973-1982 (N = 701,270) was followed prospectively until 2013. Cox proportional hazards models were used to analyse the association between sibling loss during childhood and psychiatric inpatient and outpatient care identified by the Hospital Discharge Register. After adjustment for confounders, the HRs of psychiatric care in men who experienced sibling loss were 1.17 (95% CI 1.07-1.27) while the associations turned non-significant in women after adjustment for family-related psychosocial covariates, HR 1.07 (95% CI 0.99-1.16). An increased risk was found in men bereaved in early childhood (1.22 95% CI 1.07-1.38) and adolescence (1.27 95% CI 1.08-1.48). Among women, loss of a sibling during adolescence was significantly associated with psychiatric care (1.19 95% CI 1.03-1.36). Increased psychiatric health problems following bereavement could underlie the previously found association between sibling loss and mortality from external causes. Family-related psychosocial conditions shared by siblings in childhood may account for the association between sibling death and psychiatric care in adulthood.
PURPOSE: Siblings of children and young people diagnosed with cancer are commonly reluctant to talk about their experiences due to the circumstances of the illness situation. This article aims to bring voice to experience and inform practice by investigating what and how three young sisters narrate about their illness experiences in personal blogs on the Internet.
METHODS: A narrative methodology for the analysis of life storytelling was applied primarily to investigate the sister's coping strategies and support needs.
RESULTS: The results show how the sisters constructed their own space for narration, with the main aims of expressing their feelings about the illness and seeking social support. The telling of their experiences along with encouraging comments from a supportive audience enabled a change in position from feeling neglected and silenced to being a recognized agent and caring sister. In addition, through their narrative coping the sisters went from powerless to powerful in their position in relation to cancer.
CONCLUSION: The results highlight the need for siblings to be able to narrate experience in a supportive context, where the processing of their relationship with the ill sister/brother should be understood as an important element of their coping with cancer and death.
OBJECTIVE: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers.
BACKGROUND: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens.
METHODS: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT).
RESULTS: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale.
DISCUSSION: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.