Notre équipe régionale ressource de soins palliatifs pédiatriques a recueilli le témoignage d’une maman, après le décès de son fils atteint d’une maladie neurodégénérative, sur son parcours de vie et les soins proposés. L’objectif de ce témoignage était d’avoir un support pédagogique auprès des professionnels de santé sur la complexité du parcours de soin des enfants polyhandicapés en soins palliatifs, les questionnements autour du juste niveau de traitement et du risque d’obstination déraisonnable, à partir du regard des familles.
Online support groups are popular for peer support, particularly for uncommon or stigmatized topics including pregnancy and infant loss. We conducted a randomized, controlled, 6-week feasibility study of three groups: an anonymous BabyCenter.com loss support group, a closed Facebook loss group, or a control group. Intervention arm mothers were asked to sign on to their support sites for 6 weeks. Participants completed regular surveys, text message surveys after each log-in, and a final semistructured phone interview. Thirty women were randomized to each arm of the study. Women reported preference for anonymous groups and found it empowering to support others, although many noted an emotional cost to reading postings. Tracking usage online was a major issue despite multiple strategies to collect these data. This pilot demonstrated feasibility of a randomized trial for online perinatal support but noted a critical need for more reliable methods to track usage.
BACKGROUND: The objective of the study was to assess perinatal grief experienced after continuing pregnancy and comfort care in women diagnosed with lethal fetal condition compared with termination of pregnancy for fetal anomaly (TOPFA).
METHODS: This was a retrospective observational study which included women who chose to continue their pregnancy after the diagnosis of lethal fetal condition with comfort care support at birth at the Prenatal Diagnosis Center of Rennes Hospital from January 2007 to January 2017. Women were matched with controls who underwent TOPFA for the same type of fetal anomaly, gestational age at diagnosis and year. Women were evaluated by a questionnaire including the Perinatal Grief Scale.
RESULTS: There were 28 patients in the continuing pregnancy group matched with 56 patients in the TOPFA group. Interval between fetal loss and completion of questionnaire was 6±3 years. Perinatal grief score was similar at 61±22 vs 58±18 (p = 0.729) in the continuing pregnancy and TOPFA groups, respectively. Women in the TOPFA group expressed more guilt. The cesarean-section rate in the continuing pregnancy group was 25% .
CONCLUSION: Perinatal grief experienced by women opting for continuing pregnancy and comfort care after diagnosis of a potentially lethal fetal anomaly is not more severe than for those choosing TOPFA.
Je partage avec toi un bout de ma vie qui a été très difficile. J'ai perdu ma maman en 2012 et de nombreux proches en 3 ans. J'ai écrit ce livre entre 2016 et début 2019. Je ne parle pas de théorie en tant que thérapeute, je parle en tant qu'être humain qui a eu très bobo à son petit coeur ! Haha ! Je me livre complètement à toi sur les conséquences qu'ont eu ces décès sur : ma vie, ma vision du monde et de LA vie.
Je livre mon intimité, j'espère que ce sera respecté. Car nous sommes tous humains. J'ai revisité ma vie et soigné mon enfant intérieur par le biais de la thérapie et de ce livre. J'ai mis toute mon âme dans ce bouquin ! Le deuil d'une personne chère est pour moi une mort à soi-même. Toutes mes questions existentielles ont eu besoin de réponse. J'étais tellement en colère contre le système, ma famille, les humains, la vie ! À m'en faire mal.
Que le voile de mon ignorance a craqué. Je souhaite qu'à travers ce livre, chacun puisse s'autoriser à se poser des questions sur sa place dans le monde. J'ai éclaté tout mon ancien système de pensée, de croyances, qui n'était en fait pas le mien. C'est fou tout ce que l'on absorbe de notre environnement, sans conscience et qui appartient à notre famille, jusqu'à cet inconscient collectif. Je souhaite transmettre le message qu'après la mort, il y a la vie.
Je me sens chaque jour plus proche de mon essence, j'espère que toi aussi. Et j'espère que ce livre t'inspirera, même juste un petit peu. Mourir pour mieux renaître.
The loss of a child belongs to the category of traumatic loss and is identified as a high risk variable in the development of complicated mourning. Rando (1993) even points at the need to conceptualize a special model to describe parental mourning, because bereaved parents cannot, and must not, be expected to have the same bereavement experiences as other mourners. This author describes 6 R“ processes of mourning: recognizing the loss,reacting to the separation, recollecting and re-experiencing the deceased and the relationship, relinquishing the old attachments to the deceased and the old assumptive world, and readjusting to move adaptively into the new world without forgetting the old, and reinvesting.
Background: When a mother loses a baby after the period of viability, there is no way to fathom her grief, neither any words, nor an explanation. It is an unexpected event. Stillbirth presents a situation where the early activation of the grief process primarily in mother is exacerbated by the circumstances surrounding the loss. It thus becomes imperative for the healthcare providers to evaluate the significance of parent's perception on the loss and the factors contributing to it before the initiation of therapy.
Objective: To evaluate the psychosocial impact of stillbirth among mothers and its contributing factors.
Materials and Methods: A WHO-funded prospective study was conducted in VMMC and Safdarjung Hospital from September 2015 to August 2016 on all women who gave birth to a stillborn baby, using a questionnaire based on EPDS, after taking their written informed consent. Data were entered on the predesigned proforma and analyzed after applying Chi-square test, keeping a null hypothesis value of 15% for all the variables.
Results: Out of the 709 women who delivered stillborn babies, 645 respondents, who willingly consented to participate, were included in the study. There was a significant relationship between psychosocial impact after perinatal loss and support from caregiver and family.
Conclusion: Mothers with stillborn fetuses should be screened for psychosocial impact and offered support when needed. Appropriate counseling by healthcare providers and continued psychosocial and emotional support by family members must be provided.
Ethel, 7 ans, tente de faire le deuil de sa mère à l'aide de son imagination et se réfugie souvent sur sa tombe. Un jour, elle y croise Victor, 10 ans, venu assister à l'enterrement d'un grand-oncle qu'il n'a pas connu. Une amitié profonde débute entre les deux enfants et les fait basculer entre réalité et merveilleux.
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.
The purpose of this qualitative study was to discover the coping strategies used by Spanish (European) women to cope with a pregnancy loss. Sixteen women with miscarriages and stillbirths were interviewed. All of the women were Spanish European. The mean age of the women was 35 years, and most were university graduates, married, employed, and with living children. Audio-recorded interviews and field notes were transcribed and then subsequently coded and analyzed in individual or team sessions. Construction and confirmation of the categories and related themes derived from the data was a collaborative process. Two themes emerged regarding the coping strategies used by women: talking and avoiding. This study expands the theoretical model "Multicultural Model of Coping after Pregnancy Loss" and guides health providers regarding interventions used in practice.
In December 2017, my mother was diagnosed with an end-stage pancreatic cancer. In the following weeks, she had to be taken to the emergency room frequently due to worsening infections, electrolyte imbalance, and vertigo, which often led to delirium. The doctors treating her were well qualified but lacked education and training about palliative and end-of-life care issues, which was reflected in their clinical practice. They kept treating her medical conditions as if she could be cured; no one recommended comfort measures only. After much deliberation and with some degree of hesitation, I raised the idea of palliative care with the rest of my family. Asking for palliative care-that is, accepting that the medical treatments were not working-sounded like the antithesis of my clinical work as a doctor and my duty as a son. To my surprise, my family agreed; we refused yet another hospital admission and brought her home. She has been spending the last few months in the comfort of her home being cared for by her loving family.
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.
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Le couple peut vaciller quand il fait l'expérience du deuil périnatal. Les femmes expérimentent le poids du tabou social et les hommes sont souvent oubliés sous prétexte qu'ils ne sont pas concernés dans leur chair. Lorsqu'elle a vécu l'expérience de la grossesse endeuillée, l'héroïne n'a pas trouvé les mots pour faire comprendre sa douleur à son compagnon et lui se sentait impuissant face à la détresse de sa compagne. La logique cartésienne de l'un face à la douleur viscérale de l'autre. Ce livre retrace le parcours d'un couple attachant, auquel on peut tous s'identifier.
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Le narrateur vient de perdre sa mère. Il cherche à conjurer la mort. Beur, enfant de la République, il part à la rencontre de deux figures du passé : le Ghassanide, poète contrarié devenu chef des armées du calife Abd el-Malek, et Maysara, fils d'un porteur d'eau berbère, qui, rebelle dans l'âme, a levé une armée et s'est autoproclamé calife. Quand le roman se referme, le deuil est surmonté. Le narrateur a réussi à réconcilier les trois cultures dont il est issu.
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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.
Un petit garçon décrit le quotidien de sa maman, pirate, sur Le-crabe-sans-pitié. Avec son imagination et son regard d'enfant, il décrit la fatigue, les vomissements et aide sa maman à la hauteur de ses moyens.