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Scoping review of memory making in bereavement care for parents after the death of a newborn

THORNTON, Rebecca ; NICHOLSON, Patricia ; HARMS, Louise
Journal of obstetric, gynecologic and neonatal nursing, 01/04/2019, Pagination inconnue

Thème : Deuil et travail du deuil.

DEUIL ; CHAGRIN ; PARENT ; NOURRISSON ; SOUVENIR ; PHOTOGRAPHIE ; REVUE LITTERATURE

Objective : To summarize and synthesize extant literature on memory making in bereavement care for parents who experience the death of a newborn and to identify opportunities for future research.
Data Sources : We conducted a systematic search of four health-related databases (MEDLINE Complete, CINAHL Complete, Embase, and PsychINFO) for original research in January 2019. We then conducted a manual search of the reference lists of all included articles and a citation search via Scopus.
Study Selection : Selection criteria initially included all original research articles available in English that related to parents’ perceptions of perinatal or neonatal palliative care or bereavement care for parents after the death of a newborn. These criteria were refined as we developed familiarity with the available literature. Our initial screening of article titles and abstracts yielded 287 articles for full-text review. After full-text analysis, we included all 25 qualitative or mixed method research articles that met selection criteria.
Data Extraction : We used a spreadsheet modeled on the Joanna Briggs Institute Review Guidelines (2015) for data extraction.
Data Synthesis : Available research was focused primarily on parents’ perceptions of care during and after the death of their newborns. Memory making interventions emerged as significant elements of the experiences of bereaved parent. Several researchers examined parents’ perceptions of specific memory making interventions, such as bereavement photography. Contact with the newborn, opportunities for caregiving, bereavement photography, and the collection or creation of mementos emerged as important elements of memory making. Parents also identified a need for guidance about each of these key strategies for memory making.
Conclusion : We identified few studies focused entirely on memory making as an intervention in the context of bereavement care for parents. However, memory making emerged as a recurring theme throughout qualitative and mixed method studies on parents’ perceptions of perinatal or neonatal end-of-life care. Further research is required to provide evidence to guide memory making interventions for bereaved parents who experience the death of a newborn.

Origine : ScienceDirect

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Legacy artwork in pediatric oncology - the impact on bereaved caregivers' psychological functioning and grief

SCHAEFER, Megan R. ; SPENCER, Sarah K. ; BARNETT, Michael ; REYNOLDS, Nina C. ; MADAN-SWAIN, Avi
JOURNAL OF PALLIATIVE MEDICINE, 20/03/2019, Pagination inconnue

Thème : Médecine.

PEDIATRIE ; EXPRESSION ARTISTIQUE ; SOUVENIR ; PERSONNE ENDEUILLEE ; AIDANT NATUREL ; PARENT ; CANCER ; DEUIL ; TRAVAIL DEUIL

BACKGROUND: Legacy-making (i.e., a way for patients with terminal illness to create or do something for others as a means of remembrance) is rising in popularity in palliative medicine, although only one study has examined its impact in a pediatric population.
OBJECTIVE: In response to the gaps in literature, this study (1) examines the impact of legacy artwork on bereaved caregivers' psychological functioning and grief and (2) compares caregivers' perceptions of support provided by the hospital throughout their child's cancer journey between the intervention and control groups.
METHODS: Forty-four caregivers whose children died of cancer completed a demographic questionnaire specifically created for this study, the Brief Symptom Inventory-18, and the Prolonged Grief Disorder-13. They also answered questions regarding supportive services provided to them toward the end of the child's life, at the time of death, and after the child's death. Those caregivers who endorsed participating in legacy artwork were identified as the intervention group, whereas those who did not were classified as the control group.
RESULTS: There were no significant differences in psychological functioning among caregivers who participated in legacy artwork versus those who did not participate. However, caregivers who created legacy artwork with their child reported significantly less symptoms of prolonged grief and a greater perception of support from health care providers compared with caregivers who did not engage in this activity.
CONCLUSION: Although preliminary, these findings suggest that legacy artwork may have the potential to improve grief and overall satisfaction of support from the hospital in bereaved caregivers.

Origine : PubMed

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Les sentiers perdus

DEMASSE-POTTIER, Stéphanie ; PONCET, Mathilde
2018, 2018 , 32 p.

Thème : Littérature de jeunesse. Cote : 16.00DEM

DEUIL ; GRAND PERE ; SOUVENIR ; EMOTION ; RELATION INTER GENERATIONNELLE

Une petite fille décide un matin de faire l'école buissonière... Elle a besoin de refaire le chemin, qu'elle parcourait avec son grand-père qui vient de mourir, dans la Nature qu'il lui a appris à aimer. Elle prend le temps de se remémorer leurs bons moments.

Hannah et Grand-pa

NEVEUX, Isabelle
05/2018, 05/2018 , 94 p.

Thème : Littérature de jeunesse. Cote : 16.01NEV

GRAND PERE ; SOUVENIR ; FAMILLE ; RELATION INTER GENERATIONNELLE ; ENTERREMENT ; DEUIL

Hannah évoque tous les bons moments passés avec ses cousins dans la maison de ses grands-parents pendant les vacances et en particulier ceux passés en compagnie de son grand-père. Elle vit les derniers moments de celui-ci, l'enterrement et le retour chez elle. Tous les souvenirs, les leçons de vie pleines d'amour se gravent dans son coeur.
Ce roman parle de la transmission et des souvenirs avec beaucoup de tendresse, de légèreté et de drôlerie.

Et le ciel devient familier

MORINIERE, Béatrice ; MORINIERE, François ; MORINIERE, Juliette ; MORINIERE, Paul ; MORINIERE, Matthieu ; DENIMAL,Eric
03/2019, 03/2019 , 238 p.

Thème : Littérature adulte.

MORT ; ENFANT ; TEMOIGNAGE ; PARENT ; PERSONNE ENDEUILLEE ; DEUIL ; TRAVAIL DEUIL ; PERTE ; SPIRITUALITE ; SOUVENIR

En juillet 2013, lorsque leur fille, Sophie, décède à 21 ans dans un accident de car sur la route des JMJ de Rio, ses parents sont anéantis. Ils témoignent de leur chagrin et de leur parcours émotionnel et spirituel pour faire leur deuil. Ils évoquent également le souvenir de leur fille et l'aura spirituelle qu'ils lui ont découverte après son décès en recueillant les témoignages de ses amis.
[©Electre 2019]

Les blancs pains

LISON-LEROY, Françoise ; DELAFONTAINE, Diane
03/2019, 03/2019 , 80 p.

Thème : Littérature adulte.

FAMILLE ; MORT ; ENFANT ; SOUVENIR ; ABSENCE ; PERTE ; BIOGRAPHIE

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]

Angels in the clouds - stillbirth and virtual cemeteries on 50 youtube videos

SANI, Livia ; LAURENTI DIMANCHE, Anne-Charlotte ; BACQUE, Marie-Frédérique
OMEGA JOURNAL OF DEATH AND DYING, 28/01/2019, Pagination inconnue

Thème : Deuil et travail du deuil.

MORT NE ; INTERNET ; SOUVENIR ; DEUIL ; RESEAU SOCIAL ; CIMETIERE ; RECHERCHE QUALITATIVE ; RITE FUNERAIRE

Today every aspect of our life is published and shared online, including grief. The virtual cemeteries and social networks' use could be considered as a new modern mortuary ritual. Starting from the keyword stillbirth, 50 videos published on YouTube since 2008 have been analyzed qualitatively. The videos, 70% published by the mother, with an average length of 5.52 minutes, a mean of 2,429,576 views and 2,563 of comments, follow a sort of script: the second part with black and white photos, background music, and religious references. Could the continuous access to the child's technological grave encourage a complicated grief or be a support, given by the interaction with users, limiting the sense of isolation. The parent shows his or her own conceptions about death and, as a modern baptism, presents the child to the whole society. Videos keep child's memory alive and fuel a process of personalization and tenderness in the user.

Origine : PubMed

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Un deuil, des dieux

ROPION, Isabelle F.
02/2019, 02/2019 , Pagination inconnue

Thème : Littérature adulte.

MORT ; DEUIL ; LITTERATURE ; SOUVENIR ; ABSENCE

Sept nouvelles comme un palimpseste rêveur où l’apparition fugitive des morts hante les vivants et s’enlace à l’enfance, toujours visiteuse de notre vie.
Et dans ce tenace cheminement de l’amour se mêlent l’oubli, inlassable veilleur de ce grand territoire, et l’irrémédiable, féconde et fondatrice ombre portée de l’absence.
[Extrait résumé éditeur]

Pour te voir cinq minutes encore

LE FLOCH, Aurélie
02/2019, 02/2019 , 88 p.

Thème : Littérature adulte. Cote : 17.02LEF

MORT ; PERE ; TEMOIGNAGE ; SOUVENIR ; INFECTION VIH ; ADOLESCENT ; PERSONNE ENDEUILLEE

L'auteure relate ses souvenirs de son père, mort du sida alors qu'elle avait 15 ans. Elle évoque notamment les vacances, les séparations, les premiers signes de fatigue ou encore la difficulté d'en parler.
[©Electre 2019]

Que faites-vous de vos morts ?

CALLE, Sophie
2019, 2019 , 265 p.

Thème : Deuil et travail du deuil. Cote : 10CAL

MORT ; PERE ; SEPULTURE ; PHOTOGRAPHIE ; EXPRESSION ARTISTIQUE ; PERSONNE ENDEUILLEE ; SOUVENIR

Lors d'une exposition au Musée de la chasse et de la nature en 2017, la plasticienne, évoquant la mort de son père, a interrogé les visiteurs sur ce qu'ils faisaient des traces laissées par leurs défunts, telles que leur présence dans l'agenda, leur numéro de téléphone, etc. Des photographies de pierres tombales à travers le monde sont accompagnées des messages de ces visiteurs.
[©Electre 2019]

Memory making in end-of-life care in the adult intensive care unit - a scoping review of the research literature

RIEGEL, Melissa ; RANDALL, Sue ; BUCKLEY, Thomas
Australian critical care, 17/01/2019, Pagination inconnue

Thème : Age de la vie, situations spécifiques liées à la fin de vie.

SOUVENIR ; FIN VIE ; SOIN INTENSIF ; ADULTE ; REVUE LITTERATURE ; OUTIL ; PHOTOGRAPHIE ; FAMILLE ; ACCOMPAGNEMENT

OBJECTIVE: The objective of this review is to describe the practice of memory making as part of end-of-life care within an adult intensive care setting and determine reported outcomes.
METHODS: A scoping review of the literature was performed. Data were collected from sources such as ProQuest, CINAHL, Medline, Embase, PsycINFO, and PubMed using combinations of the keywords: including adult, critical care, intensive care, ICU, death, dying, grief, bereavement, end?of?life, memento*, memor*, keepsak*, and transitional object. Peer-reviewed studies reporting on the use of memory making within an adult intensive care setting and its outcomes for family members were included.
RESULTS: Four activities facilitating memory making as part of end-of-life care for adults are reported in the literature, all in the intensive care setting. Use of a computer-generated word cloud image received by families in the intensive care was reported as a meaningful keepsake and sometimes displayed in places such as the patient's funeral memorial. Offering a printed copy of the patient's electrocardiogram as a memento was considered by some to be extremely or very helpful during their bereavement experience and was reported by nursing staff to be well received by family members. The use of patient diaries during bereavement has been reported with the potential to promote better understanding of the events leading to the death, and photography was also included in some patient diaries as a visual memento.
CONCLUSION: Although limited evidence is available concerning memory making in the adult intensive care environment, from studies to date, surviving family members of deceased patients in the intensive care unit mostly report valuing memory-making opportunities when offered. However, further research is required to evaluate both healthcare staff's competence and confidence in offering memory making and determine if such offerings promote the family's adjustment to the loss of their loved one after a death in the intensive care area.

Origine : PubMed

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Digital legacy - designing with things

PITSILLIDES, Stacey
DEATH STUDIES, 10/01/2019, p. 1-9

Thème : Mort.

THEORIE ; INTERNET ; SOUVENIR ; HERITAGE

This paper explores how theories of things can create new forms of agency for the dead. It considers how meaning is constructed through the use or translation of our diverse collections and environments online. These memorials and rituals offer a plurality of narratives, experiences and esthetics, which have the potential to give a wider scope for constructing a durable biography after death. The paper draws conceptual links between digital and physical materials and aims to expand interdisciplinary discourse around the way design can create new forms of legacy through rethinking the role of digital things in our lives.

Origine : Taylor and Francis+NEJM

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What do surviving children wish for from a dying parent? - a qualitative exploration

MURIEL, Anna C. ; MOORE, Cynthia W. ; BEISER, Marguerite ; PARK, Elyse R. ; LIM, Christopher T. ; RAUCH, Paula
DEATH STUDIES, 09/01/2019, p. 1-9

Thème : Deuil et travail du deuil.

RECHERCHE QUALITATIVE ; MORT ; PARENT ; ADULTE ; ENFANT ; PERSONNE ENDEUILLEE ; SOUVENIR ; TRAVAIL DEUIL

Legacy may play an important role in how children integrate the loss of a parent. Sixteen adults (19â€“40 years old, 69% women) who experienced the death of a parent from an illness before age 12 were interviewed, exploring legacies from their deceased parent. Transcribed interviews were iteratively analyzed by three independent coders. Extracted themes described their experiences and wish for remembrances and specific communication left for them, information about the parentâ€™s values and feelings about them, and personal possessions. This study provides novel data about legacies that bereaved children wish for in adulthood.

Origine : Taylor and Francis+NEJM

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Patients' experiences of life review therapy combined with memory specificity training (LRT-MST) targeting cancer patients in palliative care

KLEIJN, Gitta ; VAN UDEN-KRAAN, Cornelia F. ; BOHLMEIJER, Ernst T. ; BECKER-COMMISSARIS, Annemarie ; PRONK, Mathilde ; WILLEMSEN, Vincent ; CUIJPERS, Pim ; VERDONCK-DE LEEUW, Irma M.
Supportive care in cancer, 07/01/2019, p. 1-9

Thème : Soins.

CANCER ; DEMARCHE PALLIATIVE ; RECHERCHE QUALITATIVE ; SOUTIEN PSYCHOLOGIQUE ; SOUVENIR ; ESSAI CONTROLE RANDOMISE

PURPOSE: Life review therapy combined with memory specificity training (LRT-MST) is effective in cancer patients in palliative care, but the effect size is moderate. The aim of this qualitative study was to obtain more in-depth knowledge on motivation to start with LRT-MST, experiences with LRT-MST, and perceived outcomes of LRT-MST.
METHODS: Semi-structured interviews were conducted with 20 cancer patients in palliative care who participated in a randomized controlled trial investigating the effect of LRT-MST. All interviews were digitally recorded and transcribed verbatim. Data were analyzed by means of thematic analysis independently by two coders and coded into key issues and themes.
RESULTS: Patients started LRT-MST for intrinsic (e.g., potential benefit for personal well-being) and extrinsic reasons (e.g., potential benefit for future patients). Patients indicated mainly positive experiences with the intervention. They appreciated sharing their memories and regaining memories with a specific focus on retrieving positive memories. Some disliked the fact that negative memories could not be addressed. Most patients perceived positive outcomes of the intervention belonging to the overarching themes "ego-integrity" and "psychological well-being" in the here and now, as well as in the nearby future (including end-of-life).
CONCLUSIONS: LRT-MST is of added value as a psychological intervention in palliative care. This study provided in-depth insight into reasons to start the intervention, and the experiences and outcomes, which are important to further tailor LRT-MST and for development or improvement of other psychological interventions targeting cancer patients in palliative care.

Origine : PubMed

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Comment l'esprit s'incarne et triomphe de la mort ou l'empathie cosmique

LEMARQUIS, Pierre
, " Face à la mort ", 04/2018, 04/2018 , p. 265-271

Thème : Mort.

MORT ; REINCARNATION ; SOUVENIR ; VIE APRES MORT ; EXPERIENCE MORT IMMINENTE

Chaque homme laisse une trace derrière lui, en particulier les artistes. L'auteur explique de manière imagée ce qu'il convient de retenir de l'expérience de mort imminente.

Is my grief too public for you? - the digitalization of grief on Facebookâ„¢

MOYER, Lisa M. ; ENCK, Suzanne
DEATH STUDIES, 20/12/2018, n°0, p. 1-9

Thème : Deuil et travail du deuil.

DEUIL ; RESEAU SOCIAL ; PERTE ; SOUVENIR

Social media platforms such as Facebook, Twitter, Instagram, and Tumblr provide users a metaphorical space to share their feelings and experiences with others, including on the topics of grief and loss. The purpose of the current study was to examine why people post grief messages on Facebook and how they feel about othersâ€™ grief posts. Findings showed that participants post about their grief and loss on Facebook to commemorate the dead, express their grief, connect with others, and remember special occasions.

Origine : Taylor and Francis+NEJM

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There are no goodbyes

TUCKER, Rosie
BEREAVEMENT CARE, 12/2018, vol.37, n°3, p. 84-87

Thème : Deuil et travail du deuil. Cote : 00.07BER

MORT ; FRERE ; PERSONNE ENDEUILLEE ; PERTE ; SOUVENIR ; SENS VIE ; TRAVAIL DEUIL ; DEUIL

This is a very personal account of grief and finding life and meaning in the midst of it. It is about the loss of an adult sibling and the impact this had on me, his sister, and how I reconnected with my brother through his loss. It shows that the depth of our bond was significant in how I journeyed through the grief to make new meaning of that bond.
[Début de l'article]

Origine : Taylor and Francis+NEJM

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Paying your respects - transgender women and detransitioning after death

WEAVER, Karol Kovalovich
DEATH STUDIES, 12/12/2018, p. 1-7

Thème : Deuil et travail du deuil.

HOMOSEXUALITE ; SEXUALITE ; DEUIL ; SOUVENIR ; RESPECT

This paper asks how do the deaths and the postmortem detransitioning (the verbal, visual, and material rejection of a personâ€™s gender identity) of transgender women impact trans activism? After analyzing the case studies of Jennifer Gable and Leelah Alcorn, I outline how the contentious memorialization of transgender women and the disenfranchized grief of survivors influence trans activism. I conclude that activism is characterized by respecting the wishes of the deceased, by preventing the violence which transgender women experience, by advocating for trans elder care, by educating about end-of-life issues, and by lobbying for laws that protect transgender men and women after death.

Origine : Taylor and Francis+NEJM

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Do you remember being told what happened to grandma? - the role of early socialization on later coping with death

MARTINCEKOVA, Lucia ; JIANG, Matthew J. ; ADAMS, Jamal D. ; MENENDEZ, David ; HERNANDEZ, Iseli G. ; BARBER, Gregory ; ROSENGREN, Karl S.
DEATH STUDIES, 12/12/2018, p. 1-11

Thème : Deuil et travail du deuil.

SOUVENIR ; MORT ; COPING ; PERTE

Using a mixed-methods approach, we examined how participants’ memories of socialization regarding death might influence their self-reported coping with losses in childhood and adulthood. We recruited 318 adults to complete an online survey. Path analyses indicated that participants who remembered their parents shielding them less from issues related to death reported better coping as children and adults. Qualitative responses suggested participants wanted to receive more information about death from their parents as they went through the grieving process. We highlight the potential benefits of socializing children about death, and how it may aid in their coping with death-related events.

Origine : Taylor and Francis+NEJM

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Pet loss and continuing bonds in children and adolescents

SCHMIDT, Michael ; NAYLOR, Paige E. ; COHEN, Diana ; GOMEZ, Rowena ; MOSES, James A. Jr ; RAPPOPORT, Max ; PACKMAN, Wendy
DEATH STUDIES, 20/12/2018, p. 1-7

Thème : Deuil et travail du deuil.

ANIMAL DOMESTIQUE ; MORT ; SOUVENIR ; ENFANT ; PERTE ; DEUIL ; ADOLESCENT

There is little research available regarding the impact of pet loss on children. In the current mixed-methods study, we explored the different ways that children use continuing bonds (CB) to cope following the death of a pet. We studied 32 children (5â€“18 years) and their parents. Children answered four questionnaires and the Continuing Bonds Interview. Parents answered a demographic questionnaire. Results suggest that all children utilize CB while grieving the loss of a pet, although CB expression varies depending on the age of the child, the level of grief following the loss, and the strength of attachment to the pet.

Origine : Taylor and Francis+NEJM

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DEUIL ENFANT FAMILLE GRAND PERE MERE MORT PARENT PERSONNE AGEE PERSONNE ENDEUILLEE PERTE RELATION INTER GENERATIONNELLE RITE FUNERAIRE SOUVENIR TEMOIGNAGE TRAVAIL DEUIL

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