BACKGROUND: Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains poorly understood.
OBJECTIVE: To investigate associations between end-of-life experiences and race/ethnicity for pediatric patients with cancer.
METHODS:: A retrospective cohort study was conducted on 321 children with cancer enrolled on a palliative care service at an urban pediatric cancer who died between 2011 and 2015.
RESULTS: Compared to white patients, black patients were more likely to receive cardiopulmonary resuscitation (CPR; odds ratio [OR]: 4.109, confidence interval [CI]: 1.432-11.790, P = .009) and underwent 3.136 (CI: 1.433-6.869, P = .004) CPR events for every 1 white patient CPR event. The remainder of variables related to treatment and end-of-life care were not significantly correlated with race. Hispanic patients were less likely to receive cancer-directed therapy within 28 days prior to death (OR: 0.493, CI: 0.247-0.982, P = .044) as compared to non-Hispanic patients, yet they were more likely to report a goal of cure over comfort as compared to non-Hispanic patients (OR: 3.094, CI: 1.043-9.174, P = .042). The remainder of variables were not found to be significantly correlated with ethnicity.
CONCLUSIONS: Race and ethnicity influenced select end-of-life variables for pediatric palliative oncology patients treated at a large urban pediatric cancer center. Further multicenter investigation is needed to ascertain the impact of racial/ethnic disparities on end-of-life experiences of children with cancer.
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.
PURPOSE: Family communication is a known protective factor for minor children's psychological health following the death of a parent, but there is little research describing communication within such families specifically from the perspective of the children. The purpose of this study was therefore to explore communication in parentally bereaved families from the perspective of the children and surviving parent.
METHODS: Interviews with four parents and four children from four families were analyzed using inductive content analysis. Interviews took place in the family's home or at the research center based on the family's wishes 4-14 months after a parent had died. Interviews had an open approach and were based on an interview guide. Each interview was between 60 and 120 min long.
RESULTS: Four categories emerged which were related to family members' experiences of family communication while adjusting to their new circumstances as bereaved: the importance of open and honest communication in the family; new challenges in the family which affect communication; communicating the need for help; and talking about and remembering the deceased parent.
CONCLUSIONS: This study illuminates the connection between family communication and adjustments to new circumstances following the death of a parent. The results suggest that the relationship between family adjustment and communication may be circular whereby the family's ability to adjust to their new circumstances is affected by how the family communicates. Similarly, family communication may be affected by the family's coping strategies and ability to adjust to their new circumstances.
Being diagnosed with and having a life-limiting illness is a stressful experience which is compounded when the patient has dependent children. An important aspect of the patient's psychosocial care should include recognition that their children are also likely to experience severe stress because of the illness. However, children's needs are often overlooked during the illness. These needs include information about the illness. Health care professionals have a significant role in supporting patients to communicate with their children. This study aims to increase our understanding of children's experiences when a parent has a life-limiting illness by exploring bereaved children's experiences of the support they received when their parent had a life-limiting illness, and professionals' perspectives of the support offered to children. 7 children (aged between 9 and 24), and 16 health care professionals were interviewed about communication during parental illness. Children report needing open, clear and age appropriate conversations with parents and health care professionals to help them begin to obtain some meaning from the situation. The importance of communication is discussed, with particular reference to the role health care professionals have in supporting these conversations.
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.
OBJECTIVE: The clinical and nosological significance of grief reactions in youth exposed to a shared trauma (9/11) was tested by examining whether the (1) predictors (i.e., non-loss related trauma vs. traumatic bereavement), (2) clinical correlates, (3) factorial structure, and (4) phenomenology of grief reactions are distinct from those of major depressive disorder (MDD) and 9/11-related posttraumatic stress disorder (PTSD).
METHOD: In a representative sample of New York City schoolchildren (N=8,236; grades 4-12; n=1,696 bereaved), assessed six months post-9/11, multivariate regressions examined (1) predictors of grief, PTSD, and MDD, and (2) the incremental validity of grief in predicting health problems and functional impairment; factor analysis and latent class analysis determined, respectively, (3) the factorial and (4) syndromic distinctiveness of grief, PTSD, and MDD.
RESULTS: Four types of evidence supporting the distinctiveness of grief emerged. (1) Bereavement was associated with grief independently of PTSD and MDD, but not with PTSD and MDD after adjusting for grief; conversely, non-loss related trauma was associated primarily with PTSD. (2) Grief contributed uniquely to functional impairment. (3) Grief reactions loaded on a separate factor. (4) Youth with elevated grief reactions fell into two classes characterized by only moderate and negligible probability of co-occurring PTSD and MDD symptoms, respectively.
CONCLUSION: A multi-faceted approach provided convergent evidence that grief reactions are independent of other common types of post-disaster child and adolescent psychopathology, and capture a unique aspect of bereavement-related distress. These findings suggest that grief reactions in traumatically bereaved youth merit separate clinical attention, informing tailored interventions.
The authors of this paper explore the distress that terminally ill children experience when they see the suffering their illness and dying is causing their parents. The authors refer to this experience as special sorrow. The conceptual framework that guides this reflection of the terminally ill child's experience is the Roy adaptation model. The goal of this paper is to explore the concept of special sorrow as lived, so as to help nurses be with such children and their parents in a way that eases sorrow through effective adaptation and transcendence.
INTRODUCTION: Grief among bereaved parents is known to cause psychological distress and physical illness, but knowledge concerning factors that can contribute to health promotion after bereavement is scarce. Childhood cancer remains the most common non-accidental cause of death among children in Norway. The aim of the present study was to explore if resilience factors among cancer-bereaved parents could predict whether they will be able to come to terms with their grief 2-8 years following the loss.
METHODS: A Norwegian cross-sectional national survey was conducted among 161 cancer-bereaved parents using a study-specific questionnaire. Logistic regression was used to explore whether resilience factors predicted parents' grief outcome 2-8 years after their loss.
RESULTS: On the Resilience Scale for Adults (RSA), three of the resilience factors contributed significantly in predicting whether the parents in the present study would come to terms with their grief 2-8 years after the loss their child: "Perception of self "(OR 2.08, p = .048), "Social resources" (OR 2.83, p = .008) and "Family cohesion" (OR .41, p = .025). The results showed a negative relationship between time since loss (2-6 years) and whether the parents answered that they had come to terms with their grief (p = < .05). The loss of a parent (OR .30, p = .030) combined with the loss of their child had a negative and significant effect on whether they indicated that they had processed their grief.
CONCLUSION: The total score of RSA and three of the six resilient factors contributed significantly in predicting whether cancer-bereaved parents in the present study indicated that they had come to terms with their grief to a great extent. The present study supports hypotheses that regard resilience as an important contribution in predicting healthy outcomes in people exposed to adverse life events.
BACKGROUND: Bereaved parents may be at higher risk to develop persistent, severe and disabling grief, termed prolonged grief. Grief rumination, repetitive thinking about the causes and consequences of the loss, is a malleable cognitive process that maintains prolonged grief. Grief rumination can be measured with the Utrecht Grief Rumination Scale (UGRS). The present study aimed to examine the psychometric properties of the new Swedish version of the UGRS in a sample of bereaved parents.
METHODS: A Swedish nationwide postal survey including measures of demographic and loss-related variables, grief rumination (UGRS), and symptoms of prolonged grief, posttraumatic stress, anxiety, depression, and insomnia, was completed by 226 parents (133 mothers and 93 fathers) who lost a child to cancer in the past five years. Psychometric properties of the UGRS were examined through confirmatory factor analyses (CFA), reliability analyses, and assessment of UGRS score associations with symptoms of prolonged grief, posttraumatic stress, depression, anxiety, and insomnia.
RESULTS: The internal consistency of the Swedish UGRS was good. The CFA yielded an acceptable fit for a two-factor hierarchical model with five sub-factors. Grief rumination was positively associated with all psychopathology symptom measures. Higher scores on UGRS were found in parents with possible prolonged grief disorder compared to those without (d = 1.47). Moreover, the Swedish UGRS was associated with prolonged grief symptoms over and above loss-related and demographic variables and other psychopathology symptoms.
CONCLUSIONS: The Swedish UGRS demonstrated good psychometric properties, which supports its use as a measure to assess grief rumination in Swedish bereaved parents in research and practice.
Background: Persistent complex bereavement disorder (PCBD) is a disorder of grief that newly entered DSM-5. Prolonged grief disorder (PGD) is a disorder of grief included in ICD-11. No prior studies examined and compared the dimensionality, prevalence, and concurrent validity of both conditions among bereaved children.
Methods: With data from 291 help-seeking bereaved 8–18 year old children, we used confirmatory factor analysis to evaluate the fit of different factor models for PCBD and PGD. In addition, we determined diagnostic rates for probable PCBD and PGD and calculated associations of PCBD and PGD caseness with concurrently assessed symptoms of overall disturbed grief, depression, posttraumatic stress, and parent-rated problem behavior.
Results: For PCBD and PGD, one-factor models—with all symptoms forming a unidimensional factor of disturbed grief—fit the data best. The prevalence of probable DSM-5 PCBD (3.4%) was significantly lower than ICD-11 PGD (12.4%). Both PCBD and PGD were significantly associated with concurrently assessed overall disturbed grief, depression, and posttraumatic stress; associations with parent-rated problems were moderate.
Limitations: Findings were based on self-reported ratings of symptoms, obtained from three different scales not specifically designed to assess PCBD and PGD. The use of a help-seeking sample limits the generalization of findings to bereaved children generally.
Conclusions: Findings support the validity of DSM-5 PCBD and ICD-11 PGD. Prevalence rates of both constructs differ. This needs further scrutiny.
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.
Cette pièce de théâtre de 29 courts chapitres est jouée par 7 enfants, âgés de 4 à 11 ans, Acar, Bouh, Gus, Oz, Siran, Ine et Uno. La pièce démarre sur l'enterrement d'un petit oiseau. Chaque enfant participe aux funérailles, l'un porte la brouette où est déposée l'oiseau, l'autre creuse le trou, un autre apporte des brins d'herbe, le suivant le dépose dans le trou, etc.
A la fin de la cérémonie, après un long silence, s'en suit un long échange de ce qu'est la mort pour chacun d'entre eux et de ce qu'est la vie pour ceux qui restent. Chacun a son avis. Eh bien sûr quand on parle de la mort, on parle aussi de la vie !
En trois textes qui s’enchaînent, Françoise Lison-Leroy interroge la place prise par chacun dans sa famille, les présents comme les absents, ceux à la longue vie ou les enfants partis trop tôt. Comme cette tante de deux ans, emportée par la fièvre dans un temps où la vie des enfants était plus fragile.
Au cimetière du village, sa tombe côtoie celles d’autres enfants ; un respect sacré, partagé, inné entoure ce petit coin du cimetière. Sa présence habite les pensées et les promenades de l’auteure. Evocations légères, souvenirs, bribes glanées au fil des pérégrinations, mémoire de la famille... ce qui reste de vie pour ceux qui grandissent. Précédée par cet enfant, l’auteure se sent aussi portée par celle qui lui offre alors une bienveillante attention. Elle tisse un monde où les sentiments se transmettent par-delà les mots.
[Extrait résumé éditeur]
A child's death is a traumatic life experience for parents. Health-care professionals (HCPs) have sought guidance on how to intervene with grieving parents, particularly with fathers. Having therapeutic conversations is an effective way for HCPs to support grieving fathers. In our previous study, fathers identified core beliefs that influenced their experience of grief and coping. In this article, the Illness Beliefs Model was integrated with the findings to provide a framework for interventions to create open conversations, ease fathers' suffering, and thereby help their spouse and family suffering as well. This article will guide HCPs to engage in therapeutic conversations to support bereaved fathers.
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.
Au sommaire de ce dossier sur le ressenti et les émotions des soignants dans leur activité professionnelle : "Les soignants et leurs émotions au quotidien" : les soignants doivent, devant leurs émotions, adoptés des stratégies afin d'empêcher les débordements sans, pour autant, être dans l'évitement. "Fatigue compassionnelle et traumatisme vicariant chez les soignants" : le traumatisme vicariant évoque un état de stress post-traumatique chez le soignant confronté au récit traumatique d'un patient. La fatigue compassionnelle se manifeste par une érosion graduelle de l'empathie, de l'optimisme et de la compassion. Ces troubles nécessitent une prise en compte immédiate et adaptée. "Figures de la souffrance et du deuil des soignants" : le travail de verbalisation et de symbolisation est essentiel dans ce contexte. "L'impact des situations difficiles sur les soignants" : il est important de prendre en compte ces émotions et d'identifier les ressources qui peuvent être proposées aux soignants. La solidarité entre soignants et la cohésion d'équipe sont également essentielles. "Des ressources pour soutenir les soignants" : ces ressources sont les temps d'échanges, formels ou non, les réunions d'équipe, les retours d'expérience et l'analyse des pratiques. "A l'écoute de la souffrance du corps soignant". "Les soignants face aux événements douloureux, témoignages". "Rester soignant malgré l'inconcevable.".
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Cet article est une mise au point sur la mort inattendue du nourrisson, qui malgré une forte baisse, reste la 1ère cause de décès au-delà de la période néonatale, justifiant de renforcer les mesures de prévention et d'en comprendre la cause. (Adapté du R.A.).
Origine : BDSP. Notice produite par APHPDOC ltR0xAqF. Diffusion soumise à autorisation