Naissance d'un petit frère ou d'une petite soeur, séparation des parents, deuil d'un grand-parent... les enfants sont souvent confrontés à des situations déstabilisantes ; sans parler de l'actualité qui aborde des sujets sensibles tels que le chômage, le harcèlement, la guerre ou les attentats. Un moyen de trouver les mots Les parents se sentent bien maladroits pour aider leurs enfants à appréhender une réalité qui les bouleverse.
Comment expliquer en rassurant ? Comment trouver le ton juste et les paroles appropriées ? Une méthode pour communiquer sur tous les sujets délicats La psychologue Florence Millot propose de pratiquer ce qu'elle appelle la "méthode des sept portes" . Son principe ? Le dialogue, quel que soit l'âge de l'enfant.
I was getting ready to go to work when my sister called from Winnipeg. “Mom is dying,” she said. Our mother was 90 years old and had experienced a stepwise decline over several months after an episode of urosepsis, complicated by recurring episodes of aspiration pneumonia, Clostridium difficile diarrhea, and a pelvic fracture. She became less interactive with each complication. She had been clear in her instructions to us that she did not want to be kept alive if she was unable to interact meaningfully with those around her. We communicated to her clinicians that she was not to be resuscitated in the event of cardiopulmonary arrest. A few weeks after that, we moved her to a skilled nursing facility, understanding that it was inevitable that she would have further episodes of aspiration. A week later, she developed a fever and was given oral antibiotics for several days. A week after completing the course of antibiotics, she developed a fever again, so the antibiotics were restarted.
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.
Most people avoid talking about death with children even when required, as they are unsure at what age children start understanding the concept of death. Although this question has been researched in the west, it has not been answered in the Indian context. Therefore, this study was conducted in India with 25 children (14 females, 11 males; 3-5 years), using play and joint story construction method, along with semistructured interviews. Results indicated that majority of the children understood that everyone has to die, including significant people like their own parents (i.e., universality) and also, many children understood that death is final (i.e., irreversibility). However, only few children understood that all cognitive/behavioral functions cease at death (i.e., nonfunctionality). In conclusion, only a small proportion of preschoolers seems to have had a mature concept of death.
The study was to describe the essence of the lived experience of parents with a child with incurable cancer at the end of life (EOL). A descriptive phenomenological study was conducted with ten parents of children with incurable cancer in a medical centre in Taiwan. Data were collected from in-depth interviews and were analysed according to the method of Giorgi. Two major themes emerged: (a) immersion in the struggling and suffering, which included conflicts and arguments, witnessing their child suffering, denying their child being at EOL and waiting for a miracle; and (b) acceptance of death, which included an end to suffering, living in the moment, discussion of death and letting go. Parents had difficulty adapting to a palliative care perspective due to their misconception that this meant giving up on their child. In addition, religion and belief played varied and important roles in the lived experience of these parents with a child with incurable cancer. Healthcare providers must address the core value of palliative care and help parents accept the reality of their child's situation at an earlier stage in order to provide a better quality of life for the child.
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.
My youngest daughter, Ruthie, died abruptly in her sleep at the age of 29. She had married ten years ago and lived far away, in central Mexico, where it was hard to get to her, and therefore all too easy to keep telling myself she was going to be all right, even when things that were happening to her were disturbing. She had been having small, partial-brain seizures for some months, which she had been told were a result of cutting back on alcohol and she was veering somewhat erratically on and off her anti-seizure medication because it often made her too sleepy to function.
[Extrait de l'article]
This article investigates children's views on providing peer support to bereaved children. The data (pre- and postinterviews and written documents) come from an action research study of a teacher-researcher and her 16 children aged 10-11 years old. Analysis of the data shows children's ideas on supporting a bereaved child and how this support should be provided, taking into consideration various factors such as the relationship with the bereaved and the role of memories. The paper emphasizes that children should have structured opportunities across the whole-school curriculum to learn how loss affects people's lives to support themselves and others.
Childhood maltreatment dysregulates an individual’s physiological response to stress, increasing reactivity to stressors across the lifespan. Given the prevalence and impact of bereavement, we examined whether the association between childhood maltreatment and depression was exacerbated by spousal bereavement. We identified an interaction between childhood maltreatment and bereavement using linear regression analysis (B = 0.79, p < .001). A simple slopes test indicated a positive association between childhood maltreatment and depressive symptoms among those who were bereaved (B = 0.86, p < .001), but such association did not emerge among those who were not bereaved (B = 0.06, p = .60).
Le 24 juillet 2002 restera à jamais gravé dans la tête et le cour de Sylvie Bernier. Ce jour-là, son neveu Raphaël, cinq ans, s'est noyé sous ses yeux lors d'une randonnée en canot jusque-là très paisible sur la rivière Nouvelle, en Gaspésie. Un remous a fait chavirer l'embarcation dans laquelle prenait place l'enfant. Le petit Raphaël est resté coincé sous un embâcle. Cruelle ironie du sort : la plongeuse la plus célèbre du Québec, Sylvie Bernier, n'a pu le secourir.
La championne olympique a longtemps porté en elle ce deuil terrible, oscillant entre la tristesse et colère. Elle était habitée par surcroît par la culpabilité de ne pas avoir plongé pour tenter de dégager son neveu, même si le rapport du coroner confirme qu'elle serait morte aussi si elle l'avait fait, avalée à son tour par ce vortex. Dans ce récit bouleversant, Sylvie Bernier raconte comment elle a surmonté cette épreuve, depuis le chemin de Compostelle, étape essentielle de sa « guérison », jusqu'à son engagement à titre d'ambassadrice de « Nager pour survivre », de la Société de sauvetage, un programme destiné à apprendre aux enfants les habiletés nécessaires pour survivre à une chute en eau profonde.
It is important for the health care community to understand the impact of a child's death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child's end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least "a little benefit" and half reported at least "a little burden" associated with participation. Less burden was perceived by younger and female parents, parents of younger children, those who had felt prepared to meet their children's emotional needs at EoL, and those not using bereavement services at the time of the survey. With the increasing use of social media as a source for bereaved parents to receive and provide emotional support, it is important for clinicians and researchers to understand the perceived benefits and risks of participating in research about EoL experiences via online recruitment. Our findings suggest that the benefit and burden of online research participation may vary for bereaved parents, but further research is necessary to replicate the findings and explore ways to optimize the use of this approach.
When a child loses a parent, their life is forever changed. A world that seemed safe and predictable suddenly becomes strange, frightening, and uncertain (Green & Connolly, 2009). In the time following the loss, it may be difficult for the child to imagine how to ever rediscover the joy of life and move past the loss. The loss of a parent is unfortunately not entirely uncommon, as Pearlman, Schwalbe and Cloitree (2010) report that about 4% of all children in the Western world lose one or both parents before the age of 18.
Little literature examines the cognitive journey taken by parents considering/receiving hospice care for their child. A constructivist grounded theory study explored 38 parents' views of considering/using a children's hospice. Data analysed from focus groups and interviews identified three main concepts. The focus of this paper is identified as Coming ‘Home’. This concept depicts the desire and the sense of searching that parents experienced in trying to find a place, other than their actual home, where their child could access a caring environment and their parents received some respite from caregiving. Despite there being a paradox associated with hospice-based respite, once they had crossed the threshold the parents bonded with the place and experienced rootedness and familiarity. The hospice became a place of living and belonging; a place where they could ‘come home’.
BACKGROUND: The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care consultation tends to occur after >75% of the time from diagnosis until death. Focusing on the timing of palliative consultation in relation to the date of diagnosis, we evaluated factors predicting earlier receipt of pediatric palliative care in a cohort of decedents.
METHODS: We retrospectively identified patients diagnosed with a life-limiting disease who died at our hospital in 2015-2017 after at least 1 inpatient palliative medicine consultation. Our primary outcome was time from palliative-qualifying diagnosis to earliest receipt of specialty palliative care. A survival analysis was used to describe factors associated with earlier receipt of palliative care.
RESULTS: The analysis included 180 patients (median age at diagnosis <1 month [interquartile range (IQR): 0-77]). The median time to first palliative consultation was 7 days after diagnosis (IQR: 2-63), compared with a median of 50 days between diagnosis and death (IQR: 7-210). On the multivariable analysis, palliative consultation occurred earlier for patients who had cardiovascular diagnoses, had private insurance, and were of African American race.
CONCLUSIONS: In a cohort of decedents at our institution, palliative consultation occurred much earlier than has been previously reported. We also identify factors associated with delayed receipt of palliative care among children who are dying that reveal further opportunities to improve access to specialty palliative care.
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.
BACKGROUND: Following organ donation, bodies of children are generally cared for in hospital mortuaries or by funeral directors, and their families are offered little routine bereavement support. A partnership between an organ donation nursing team and regional children's hospice trialled an initiative where families were offered bereavement support from the hospice, and their child's body was cared for in a 'cool room' after death. Hospice services are usually restricted to children with life-limiting conditions, and their families.
OBJECTIVE: To explore the perceptions and experience of nursing staff who are involved in supporting families of children and young people who have been cared for in children's hospice cool rooms after death, following organ donation.
DESIGN: A qualitative exploratory study consisting of a focus group interview with registered nurses from the children's hospice and organ donation teams.
METHOD: A purposeful sample of nurses was recruited. Data were collected in a digitally-recorded focus group interview during March 2018. The interview was transcribed and analysed using a qualitative content approach.
RESULTS: Six nurses participated in the focus group. Analysis revealed five themes that characterised the perceptions of nurses: (i) barriers to care, (ii) bereavement care for families, (iii) impact on families and staff, (iv) influencers and enablers of change, and (v) sustainability of new practices.
CONCLUSION: Nurses perceived the long-term, responsive and family-centred approach to bereavement support as a strength of the hospice model, reducing the experience of moral distress in organ donation nurses.
Research conducted using the Haley Transcultural Strengths Assessment Interview Guide used in several studies has identified 11 sources of strength routinely utilized by parents caring for their child with intensive needs and child in hospice/palliative care. Results of past studies demonstrated this Strengths Guide (SG) interview to be an intervention bringing a heightened realization of the importance and utilization of one's inner strengths. The purpose of this study was to assess the long-term impact of this SG with a population of parents who participated in a previous study using the SG. This descriptive study was conducted using a quantitative tool, the Personal Strength Rating Scale, comparing the post-SG interview results with those results obtained 3 years later. Participants in this study were parents caring for a child receiving palliative/hospice care at home in Kenya. Results revealed the long-term retention of strengths following the SG interview 3 years previously was, for most sources of strength, equal to or greater than those obtained immediately following the SG.
BACKGROUND: Children with complex chronic conditions (CCCs) require a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care.
METHODS: We performed a retrospective population-based analysis using a California State administrative database of children aged 1 to 21 years with a CCC who died of disease-related causes between 2000 and 2013. Rates of and sociodemographic and clinical factors associated with previously defined inpatient end-of-life intensity indicators were determined. The intensity indicators included: (1) hospital death, (2) receipt of a medically intense intervention within 30 days of death (ICU admission, cardiopulmonary resuscitation, hemodialysis, and/or intubation), and (3) having >=2 intensity markers (including hospital death).
RESULTS: There were 8654 children in the study population with a mean death age of 11.8 years (SD 6.8). The 3 most common CCC categories were neuromuscular (47%), malignancy (43%), and cardiovascular (42%). Sixty-six percent of the children died in the hospital, 36% had a medically intense intervention in the last 30 days of life, and 35% had >=2 intensity markers. Living in a low-income neighborhood was associated with increased odds of hospital death, a medically intense intervention, and >=2 intensity markers. Hispanic and "other" race and/or ethnicity were associated with hospital death and >=2 intensity markers. Age 15 to 21 years was associated with hospital death, a medically intense intervention, and >=2 intensity markers.
CONCLUSIONS: Sociodemographic disparities in the intensity of end-of-life care for children with CCCs raise concerns about whether all children are receiving high-quality and goal-concordant end-of-life care.