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 Teens were more withdrawn than school-age children at all time points.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.
Sam, 9 ans, fait sa rentrée dans une nouvelle école et doit affronter de nouveaux copains avec la tristesse d'un petit garçon qui vient de perdre sa petite soeur d'une maladie neurodégénérative.
Nous le suivons dans sa nouvelle vie avec toutes ses questions, ses doutes, ses chagrins, les rencontres qui le consolent, les premières fois sans... Et les sentiments qui l'assaillent à la naissance d'une autre petite soeur.
Lilou est inquiète. Sa maman qui était enceinte, a perdu son bébé. Est-ce la faute de Lilou ?
Au travers du regard d'une petite fille, avec beaucoup de justesse, l'auteure nous dévoile comment les enfants appréhendent les drames que peuvent traverser la famille.
Two million children experience sibling death annually and have problems that require clinical intervention although few receive such help. Effects on surviving siblings' mental health has been well documented, however their physical health has not. This study described surviving siblings' illnesses, treatments/health services at 2, 4, 6, and 13 months post-sibling death. The 132 children (76 girls, 56 boys, M 10.6 years, SD 3.43); 30% Hispanic, 51% Black, 26% White were recruited via hospital ICUs and published obituaries. Using a longitudinal design, parents reported types and numbers of surviving siblings' illnesses, treatments/health services, and dates post-sibling death. Most of the 207 illnesses and 674 treatments/health services occurred in the first 6 months post-sibling death. While girls had more illnesses (131) than boys (76) and Hispanic children had more illnesses than White or Black children, these differences were not statistically significant. Girls accounted for 66% of the treatments/health services and boys 34%. There was no significant difference in treatments/health service use by gender of the children (F = 1.00, p = .32). Hispanic children had significantly more treatments/health service use than Black children (F = 6.81, p = .002). Sibling death affects surviving siblings' physical health. Study data document the importance of monitoring the health, treatments and health service use of surviving siblings especially in the first 6 months after a sibling death, regardless of the child' s gender. On average, Hispanic children had greater health service use, which may warrant greater attention.
Continuing a bond after a loved one's death is considered typical and healthy. However, such a bond can continue symbolically only if it existed in the first place. What of indirect grievers, those who never knew the decedent? The authors describe bonds between individuals who did not have a living relationship to begin with, a concept referred to as imagined bonds. Forty-nine adults, who had a sibling die that they never knew, were interviewed. This article describes the bonds constructed between participants and the sibling they never knew. The authors compare and contrast the concepts of continuing bonds versus imagined bonds.
Objectif : Evaluer l'expérience et l'adaptation de la fratrie endeuillée 7 à 15 ans après la mort d'un frère ou d'une soeur et l'impact du fonctionnement familial sur le deuil des survivants.
Méthodologie : Cette étude transversale descriptive incluait des participants âgés de 14 à 22 ans ayant vécu entre 2 et 18 ans la mort d'un membre de leur fratrie, entre 2001 et 2009. L'intensité du deuil, la présence et la sévérité des symptômes dépressifs, le bien-être, l'estime de soi, les habitudes de consommation ainsi que la scolarité des participants ont été évalués par des questionnaires autoadministrés, standardisés et validés. L'aspect comportemental de l'enfant endeuillé ainsi que le fonctionnement familial étaient évalués à la fois par un parent et le participant.
Résultats : Quatorze familles ont participé à l'étude. Neuf jeunes présentaient un deuil prolongé. Six participants ont obtenu, respectivement, des résultats correspondant à des problèmes de stress importants et à une faible estime personnelle. Aucun problème de dépression, de trouble de comportement ou de consommation n'a été rapporté. Les participants ayant un deuil prolongé étaient membres de familles où les caractéristiques fonctionnelles étaient différentes de celles ayant un deuil absent au niveau de la rigidité (22.0, écart interquartile (EIQ) [19.0-24.0] vs 16.0, EIQ [12.0-16.0] ; p=0.01) et de l'enchevêtrement (15.0, EIQ [12.0-17.0] vs 11.0, EIQ [7.0-13.0] ; p=0.045).
Conclusion : Le deuil prolongé, les problèmes d'anxiété et la faible estime de soi caractérisent la majorité de nos participants. Certaines caractéristiques fonctionnelles familiales, telles la rigidité et l'enchevêtrement, sont associées au deuil prolongé de la fratrie.
Quand survient la mort prématurée dâ€™un bébé dans une famille, les frères et sÅ“urs ont besoin dâ€™être soutenus. Leur silence, leur absence de questions ou de réactions doivent alerter. Les parents, au-delà de leur vécu de deuil, ont un rôle déterminant pour permettre à leurs enfants dâ€™intégrer cette perte dans leur vie.
À l'âge de treize mois, Gaspard est diagnostiqué de la maladie de Sandhoff, maladie neuro-dégénérative rare, incurable.
Dans un témoignage aussi émouvant que salutaire, écrit à quatre mains, ils racontent leur cheminement et la façon dont la maladie a radicalement changé leur regard sur la vie.
This study proposes a method for calculating the annual incidence rate of sibling bereavement among US youth using national epidemiological data. The proposed model combines data on family household size with national death statistics to calculate the number of siblings affected by the death of a child annually. From 2012 to 2015, an average of 61,389 children per year experienced the death of a sibling, resulting in an estimate of 0.0832% of children bereaved by the death of a sibling annually. Data indicate a need for greater awareness and dialog concerning the frequency with which children experience the death of a sibling.
Même s'il n'est pas confronté directement à la mort, l'enfant s'interroge.
Parfois des deuils frappent tôt. On ne répond pas toujours à ses questions. Il pressent, il devine à travers les non-dits ou les dérobades des adultes, le poids de la souffrance, le chagrin d'une séparation.
Faute d'explication, l'enfant s'en invente, à la mesure de son expérience et de sa compréhension.... Mieux vaut en parler avec lui, l'écouter, lui dire avec ses mots à soi, avec tendresse, ce que l'on sait et ce que l'on vit.
Carré 35 est le lieu a été enterrée la sœur aînée du réalisateur morte à l’âge de trois ans "Cette sœur dont on ne m’a rien dit ou presque, et dont mes parents n’avaient curieusement gardé aucune photographie. C’est pour combler cette absence d’image que j’ai entrepris ce film. Croyant simplement dérouler le fil d’une vie oubliée, j’ai ouvert une porte dérobée sur un vécu que j’ignorais, sur cette mémoire inconsciente qui est en chacun de nous et qui fait ce que nous sommes."
[D'après le synopsis]
There is a need for guiding theory to understand the experiences and outcomes of bereaved siblings, particularly from a family systems framework. The present study investigated the relevance of emotional security theory in a sample of 72 young adults who experienced sibling bereavement. We investigated (1) whether perceptions of prolonged parental grief predicted key aspects of emotional security (disengagement, preoccupation, and security), and (2) whether emotional security mediated a relation between perceptions of prolonged parental grief and young adult emotional functioning. Results supported the potential utility of emotional security theory as a theoretical framework for understanding sibling bereavement.
This interpretative phenomenological analysis explored the key issues in the grief experiences of seven young adults bereaved by the youth suicide of a sibling. We conducted semi-structured phone interviews from which we derived four themes describing the participants’ experiences of: (a) the process of grief, (b) grief interactions (within families and outside), (c) continuing bonds, and (d) meaning-making and growth through grief. The stories highlight the impact of family relationships on the grieving process in siblings and the need for support to help family members better communicate, understand, and respect each other’s needs as they process their grief.
The death of a child is a heart-wrenching experience that can have a significant impact on parents, siblings, and families while also often having ripple effects throughout the child's community. Pediatric loss has an impact on family structure and dynamics, individual identity formation, and conceptualization as well as professional practice. This article explores bereavement after a child's death through the lens of the family, the parent, the sibling, the forgotten grievers, and the provider.
The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings' grief and grief-related growth and to examine whether nonparental sources of social support buffer the effects of low parent support on bereaved siblings. Families (N = 85) were recruited from cancer registries at 3 pediatric institutions 3-12 months after a child's death. Bereaved siblings were 8-18 years old (M = 12.39, SD = 2.65) and majority female (58%) and White (74%). During home visits, siblings reported their perceptions of social support from parental and nonparental sources using the Social Support Scale for Children, as well as grief and grief-related growth using the Hogan Sibling Inventory of Bereavement. Parent, friend, and teacher support were positively correlated with grief-related growth, whereas parent and peer support were negatively correlated with grief for adolescents. Teacher and friend support significantly moderated the association between parent support and grief such that teacher and friend support accentuated the positive effects of parent support. Friend and peer support moderated associations between parent support and grief/growth for adolescents but not children. School-based social support, namely from friends, peers, and teachers, appears to facilitate the adjustment of bereaved siblings. Findings suggest that bereaved siblings may benefit from enhanced support from teachers and friends regardless of age, with middle/high school students particularly benefitting from increased support from close friends and peers.