La vie de Fabienne bascule une nuit de novembre 2015 lorsque son fils Giani se fait poignarder. Laissé pour mort, le jeune homme s’en sort miraculeusement, mais avec de terribles séquelles : handicapé à 95 %, il souffre également d’un « locked in syndrom ». Enfermé dans son propre corps, Giani est désormais incapable de marcher, de manger et même de respirer seul. Il ne communique plus qu’en bougeant les paupières et en soulevant un doigt. En permanence, sa mère est à son chevet, témoin impuissant de sa souffrance mais prête à se battre pour que justice soit faite. Dans ce témoignage, Fabienne raconte la lutte quotidienne de son fils. Un calvaire qui durera trois longues années. Jusqu’au moment où Giani exprime sa volonté d’en finir et de mourir dignement. Un droit élémentaire dont cette mère-courage a fait aujourd’hui son combat.
Some experiences are unique to palliative care clinicians. We are the only specialists who can expect that everyone we know and love, and everyone they know and love, may need our expertises at some point.
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IMPORTANCE: Pregnancy loss and infant death are unexpected, traumatic, life-changing events. The role of occupational therapy practitioners in treating this population is not well defined.
OBJECTIVE: To describe the outcomes of an occupation-based residential retreat for women who have experienced pregnancy or infant loss.
DESIGN: Program evaluation.
SETTING: Seven residential retreats for bereaved mothers.
PARTICIPANTS: One hundred forty-one women who experienced perinatal loss.
INTERVENTION: Residential retreats that were held in natural settings and included occupation-based activities such as group discussions, yoga, meditation, crafts, and rituals to facilitate grieving and healing processes after perinatal loss.
OUTCOMES AND MEASURES: The Beck Depression Inventory, PTSD Checklist-Civilian Version, Self-Compassion Scale, and Multidimensional Scale of Perceived Social Support were collected pre- and postretreat.
RESULTS: Statistically significant improvements were seen in women's depression, trauma, self-compassion, and perceived social support from pre- to postretreat.
CONCLUSIONS AND RELEVANCE: At present, occupational therapy practitioners support this population primarily by providing referrals and information about local resources. However, as occupational therapy practice in primary care settings grows, so too do possibilities for the development of occupational therapy-related interventions to support maternal mental health.
WHAT THIS ARTICLE ADDS: This article provides preliminary support for occupation-based retreats as a treatment for improving maternal mental health after perinatal loss.
The death of one's mother during childhood is the severing of one of the most important human bonds. The child may suffer periods of grief that continue into adulthood and throughout life. The nurse has a vital role in assisting women traumatized by loss of a mother at a young age. This article discusses the experience of maternal loss and notes care needs of the motherless child-adult woman. Identification of women in this situation should be made as early as possible.
This study explored the bereavement experience of mothers after losing a child to cancer in Korea, using photovoice. The mothers took photos reflecting five subject areas they selected: (a) if I had one more day with my child, (b) memories with my child, (c) dreaming of my child’s healthy future, (d) what gave me strength, and (e) fulfilling my child’s wishes for the future. The findings show that mothers who lost a child to cancer need bereavement care to promote well-being. This study can help pediatric oncology providers develop bereavement interventions that address parental grief and improve quality of life.
INTRODUCTION: The analysis of patients' satisfaction with healthcare is recognised as being useful in the evaluation of health outcomes and perceived quality of care. Little is known, however, about how the psychological status of women who experience perinatal complications may affect their perceived satisfaction with care.
METHODS: We assessed healthcare satisfaction in 52 women who had undergone intrauterine surgery during a complicated monochorionic twin pregnancy and examined the influence that fetal loss and sociodemographic, clinical, and psychological factors had on the degree of satisfaction. Data were gathered in an individual interview and through the administration of the Medical Patient Satisfaction Questionnaire, Beck Depression Inventory, and State-Trait Anxiety Inventory. Relationships between variables were analysed using a chi-square test, Spearman's rho, Student's t test, and the Mann-Whitney U test, in accordance with the metric nature of the variables and the assumptions fulfilled.
RESULTS: Age and level of education were not associated with the degree of healthcare satisfaction. Negative but non-significant correlations were observed between the level of satisfaction and symptoms of anxiety and depression. Satisfaction with healthcare was high in the sample as a whole, although it was significantly higher among women who had not experienced fetal loss. There were no differences in satisfaction with services involving direct contact with medical staff, whereas satisfaction with indirect services was lower among women who had experienced perinatal loss.
CONCLUSIONS: Due to the unique characteristics of this population, specialised care teams of both professional healthcare and indirect services are needed. Although administrative aspects of healthcare are regarded as being of secondary importance, this may not be the case with more vulnerable populations.
BACKGROUND: There is no international consensus on the definition and components of severe maternal morbidity (SMM).
OBJECTIVES: To propose a comprehensive definition of SMM, to create an empirically justified list of SMM types and subtypes, and to use this to examine SMM in Canada.
METHODS: Severe maternal morbidity was defined as a set of heterogeneous maternal conditions known to be associated with severe illness and with prolonged hospitalisation or high case fatality. Candidate SMM types/subtypes were evaluated using information on all hospital deliveries in Canada (excluding Quebec), 2006-2015. SMM rates for 2012-2016 were quantified as a composite and as SMM types/subtypes. Rate ratios and population attributable fractions (PAF) associated with overall and specific SMM types/subtypes were estimated in relation to length of hospital stay (LOS > 7 days) and case fatality.
RESULTS: There were 22 799 cases of SMM subtypes (among 1 418 545 deliveries) that were associated with a prolonged LOS or high case fatality. Between 2012 and 2016, the composite SMM rate was 16.1 (95% confidence interval [CI] 15.9, 16.3) per 1000 deliveries. Severe pre-eclampsia and HELLP syndrome (514.6 per 100 000 deliveries), and severe postpartum haemorrhage (433.2 per 100 000 deliveries) were the most common SMM types, while case fatality rates among SMM subtypes were highest among women who had cardiac arrest and resuscitation (241.1 per 1000), hepatic failure (147.1 per 1000), dialysis (67.6 per 1000), and cerebrovascular accident/stroke (51.0 per 1000). The PAF for prolonged hospital stay related to SMM was 17.8% (95% CI 17.3, 18.3), while the PAF for maternal death associated with SMM was 88.0% (95% CI 74.6, 94.4).
CONCLUSIONS: The proposed definition of SMM and associated list of SMM subtypes could be used for standardised SMM surveillance, with rate ratios and PAFs associated with specific SMM types/subtypes serving to inform clinical practice and public health policy.
This is an evidence-based case study examining the process and outcome of 22 prenatal sessions and 1 postpartum follow-up session of psychodynamic therapy for a woman pregnant after a history of repeated pregnancy losses. Self-report measures of depression, anxiety, pregnancy-specific anxiety, prenatal attachment, trauma, and perinatal grief were completed prior to each session. A session quality item was completed after each session and a therapy outcome measure at termination and follow-up. The therapist and the patient completed an exit interview on the therapy relationship, which focused on moments of tension or misunderstanding, over the course of treatment. All sessions were transcribed and scored by certified raters for reflective functioning. Results suggest that the patient experienced reliable and clinically significant change on all pregnancy-specific measures, with most change happening in the early phase of treatment. However, general symptoms of depression and anxiety were variable and highly volatile over time. Exit interviews suggest that therapist empathy and validation were helpful in promoting change on pregnancy-specific symptoms, whereas problems or ruptures in the alliance may have been associated with a lack of change on general psychiatric symptoms. The patient showed little change on reflective functioning, perhaps contributing to ruptures in psychotherapy and lack of change on general psychiatric symptoms.
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.