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.
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.
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 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.
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.
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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.
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.
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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.
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.
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.
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.
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.
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.
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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.
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.
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.