Lila, 25 ans, jeune interne en neurochirurgie à l'hôpital Bichat, découvre les circonstances du décès de sa mère Marianne lorsqu'elle était adolescente. Presque dix ans ont passé et la jeune fille commence enfin son deuil. Le temps d'un été, elle part à la rencontre de sa famille, se faire raconter Marianne.
The following self-analysis contains key experiences of maternal grief over the course of the first 2 years following the death of a child, with specific examples and observations from bereaved mothers shared with the author. The references provide supporting evidence for commonality of the lived experience and observations. Therapeutic responses for clinicians give concrete direction for providing effective comfort. Self-care suggestions for mothers provide specific guidance for the readers. A 14-year retrospective epilogue puts the charged emotional description into a context of healing.
I miss my mom, who died last year, and I want to tell the happy story of her death, or perhaps the story of her happy death through her choosing and accomplishing medical aid in dying. My mom was 85 when she died, had atypical presentation of lymphoma which took time to diagnose, and went through 3 painful months of surgery, radiation, and a single horrific round of chemotherapy. She suffered a lot. When she was in the hospital recovering from chemo, I witnessed 3 amazing doctors being true to core values of their profession. But the most profound aspect and gift of the events surrounding her death was the way in which making an informed choice gave my mom back her presence—allowing her both peace and power in the end of her life.
Anne-Dauphine Julliand a perdu ses deux filles, Thaïs et Azylis, d’une maladie orpheline.
"J’ai beaucoup souffert et je souffre encore, écrit-elle. Mais j’ai appris la consolation, ce délicat rapport à l’autre: s’approcher, toucher, parler. »
Grâce à des scènes vécues, Anne-Dauphine partage ses réflexions qui touchent juste. Si elle évoque bien sûr sa famille, son livre est aussi un hommage à tous les consolants : une soeur qui vous prend dans les bras, une infirmière qui s’assoit quelques minutes au bord du lit et prend juste le temps « d’être là ».
[Extrait résumé éditeur]
In this paper we, twin sisters, present a joint autoethnographic account of providing end of life care for our mum who had terminal cancer. Using the theoretical framing of performance from Goffman's theory of Dramaturgy, we present the findings from a joint autoethnography, focusing on two key themes: performing emotion work and performing what we conceptualise as ‘dignity work’. This paper's contributions are twofold. First, conceptually, this paper offers an important contribution to literature concerned with the sociology of illness, by critically engaging with Goffman's notion of frontstage and backstage performance, applied to the context of home care provided by family carers. The second contribution of this paper is methodological; we promote the under-utilised approach of a joint autoethnography and argue for its usefulness in the context of end of life care. We contend that the process of writing this paper was emotionally challenging, yet arriving at the final paper, which serves as a legacy of our mum, was cathartic. We argue for the usefulness of written diaries as a backstage arena through which other informal carers can think through, and come to terms with, experiences of death and dying.
Aim: This study aims to explore the experiences of bereavement after stillbirth of Pakistani, Bangladeshi and White British mothers in a town with multi-ethnic populations in England.
Participants: A purposive sample of Pakistani, Bangladeshi and White British mothers aged over 16 (at time of infant birth), who suffered a stillbirth in the preceding 6–24 months and residing in a specified postcode area were invited to take part in the study, by an identified gatekeeper (audit midwife) from the local National Health Service Trust, in addition to local bereavement charities.
Design: Qualitative methods using face-to-face semi-structured interviews were undertaken, recorded and transcribed verbatim. Using framework analysis, several themes were identified.
Findings: There were three main themes identified from the data; 1. knowledge and information of pregnancy and perinatal mortality; 2. attitudes and perceptions to pregnancy and perinatal mortality and 3. experiences with maternity care. The findings revealed mostly similarities in the bereavement experiences of the Pakistani, Bangladeshi and White British mothers. A few cultural and religious differences were identified.
Conclusions: This study found important similarities in bereavement experiences of Pakistani, Bangladeshi and White British mothers and highlights considerations for policy makers and maternity services in how the timing of bereavement after care is provided, including advice surrounding the infant post-mortem. 209
BACKGROUND: Mothers and fathers are severely challenged when providing care for their terminally ill child at end of life. Caregiving needs have been studied predominantly in mothers. Differences in caregiving needs between mothers and fathers during their child's end of life have not, however, been explored so far. This knowledge is of importance to best meet individual parental needs in paediatric end-of-life care.
METHODS: Secondary analysis of a quantitative survey on parental needs during their child's last 4 weeks of life, collected in the Swiss multicentre "Paediatric End-of-Life Care Needs" (PELICAN) study. Caregiving needs of mothers and fathers (parental dyad) who had lost a child due to a cardiological, neurological or oncological disease or during the neonatal period in the years 2011-2012 were retrospectively assessed using a questionnaire representing six evidence-based quality domains of paediatric palliative and end-of-life care.
RESULTS: Seventy-eight parental dyads were included in this analysis. Differences between mothers and fathers were mostly found around needs to be supported as a family. In all, 28 out of 34 needs-related questionnaire items were scored higher by mothers than by fathers, indicating higher importance for that need to be met. The results indicate that these differences might relate to different caregiving roles and gender-specific coping strategies.
CONCLUSIONS: To best meet parental needs in paediatric end-of-life care, particular attention should be paid to both mothers and fathers and their specific caregiving roles, as differences in these roles might influence their needs in this exceptional situation. Therefore, healthcare professionals should identify how parental dyads mutually navigate care for their sick child to best meet their needs in support. Additionally, mothers and fathers should be supported in their individual coping strategies.
The first case of novel coronavirus disease of 2019 (COVID-19) caused by severe acute respiratory syndrome–coronavirus 2 (SARS-CoV-2) was reported in November 2019. The rapid progression to a global pandemic of COVID-19 has had profound medical, social, and economic consequences. Pregnant women and newborns represent a vulnerable population. However, the precise impact of this novel virus on the fetus and neonate remains uncertain. Appropriate protection of health care workers and newly born infants during and after delivery by a COVID-19 mother is essential. There is some disagreement among expert organizations on an optimal approach based on resource availability, surge volume, and potential risk of transmission. The manuscript outlines the precautions and steps to be taken before, during, and after resuscitation of a newborn born to a COVID-19 mother, including three optional variations of current standards involving shared-decision making with parents for perinatal management, resuscitation of the newborn, disposition, nutrition, and postdischarge care. The availability of resources may also drive the application of these guidelines. More evidence and research are needed to assess the risk of vertical and horizontal transmission of SARS-CoV-2 and its impact on fetal and neonatal outcomes.
As the COVID-19 pandemic continues to spread across the country, I am proud to be a part of a community of physicians selflessly stepping up to the call to help. Palliative medicine has taken on a vital role in this crisis, in leading discussions on goals of care and taking over the care of those who are dying of this disease. As a palliative medicine fellow, I feel a palpable energy among my colleagues and mentors as we rise up to this challenge. We lead ethics committees on codes and triage committees for ventilator allocation if we were to face a shortage—a situation that would have been inconceivable just a few weeks ago. Now more than ever, there is a common sense of purpose among health care providers: we are all in this fight together. Yet behind this common purpose, many of us have a common fear. Not only do we fear for our own health, but we also fear for the health of our families that we come home to at night.
Maman a un cancer, un lymphome, un gros pamplemousse qui l'empêche de respirer dans le poumon. On suit le parcours de soins, du diagnostic au traitement jusqu'à la guérison, à travers les yeux d'un petit garçon et de son papa.
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.
BACKGROUND: While women in the Deep South area of the United States have higher rates of maternal and infant mortality, palliative and supportive care programs are lacking. Additionally, few studies have detailed referral triggers that are specific to the mother, infant, or pregnancy for inclusion in perinatal and neonatal palliative and supportive care programs.
PURPOSE: The purpose of this retrospective, descriptive study was to examine the sociodemographic factors and referral triggers for perinatal-neonatal palliative and supportive care services for women enrolled in a newly developed perinatal-neonatal palliative and supportive care program.
METHODS: Data were collected from medical records of 135 women enrolled in the program. Triggers for referral to the program were classified as fetal, maternal, or prenatal complications.
RESULTS: A diverse sample of women were enrolled in the program. Most infants survived to birth and discharge from the hospital. Two-thirds of referrals were related to infant complications and 34% were for multiple complications (fetal, maternal, and/or prenatal). Triggers for referral to the program were not related to sociodemographic characteristics of women.
IMPLICATIONS FOR PRACTICE: A comprehensive list of triggers that include maternal and prenatal complications, in addition to infant complications, may ensure at-risk women and infants, are enrolled in perinatal-neonatal palliative and supportive care programs early in pregnancy, regardless of sociodemographic factors.
IMPLICATIONS FOR RESEARCH: Prospective research on the effectiveness of perinatal-neonatal palliative and supportive care programs in diverse populations of women is needed. This includes the examination of family health outcomes and provider perspectives.
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]
Under-five (U-5) mortality is a major public health problem in lower-middle income countries. The aim of this study is to examine the associations between maternal education and mortality of children below 5 years age in Indian context. We have used bi-variate and multivariate logistic regressions to assess the associations. Our study reveals that increasing level of education among women and in association with socio-economic and demographic factors significantly reduces the incidence of U-5 mortality. The findings suggest that increasing opportunities for female education and addressing socio-economic and demographic vulnerabilities could be effective strategies to combat the incidence of U-5 mortality.
BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL).
OBJECTIVE: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL.
METHODS: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview-(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) "Agreed/disagreed" with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define "QOL" and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12.
RESULTS: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated "Impact on Your Physical/Mental Health" (average 5.6) and IOs rated "financial Concerns" the highest (average 6.6), both groups ranked "financial Concerns" as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that "Any amount of life is better than no life at all" (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause "Too much suffering" for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase "QOL". Although the majority described a good QOL in terms of emotional well-being (eg "loved", "happy", "supported"), a poor QOL was described in terms of functionality (eg "dependent" and "confined"). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL.
CONCLUSION: Our study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.
La mort d’un d’enfant provoque chez les parents une douleur incommensurable. À travers le témoignage d’une mère endeuillée, nous suivrons le long travail de séparation permettant d’atténuer cette souffrance. Nous verrons comment la théorie classique sur le deuil, élaborée par Freud, ne peut éclairer de façon satisfaisante la spécificité du deuil d’enfant.
Despite the increasing number of people being bereaved by suicide, little is understood concerning the experiences of those bereaved by suicide as they struggle to make sense of a loved one’s death. The current study explored the experiences of four mothers who had been bereaved by suicide and the role of support groups in the meaning-making process following bereavement by suicide. Participants were interviewed and transcribed interviews were then analysed from an interpretative phenomenological perspective. Four main themes were identified: Continuing role of the mother; A never-ending quest; Finding sanctuary; and Rising up from the ashes. These themes relate to a range of emotions following bereavement by suicide, the meaning-making process, the social context and the role of the support group. Clinical implications are discussed in relation to these findings.