Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent–child communication. We examined the impact of a web-based legacy intervention on parent–child communication. Facebook advertisements were used to recruit families of children (ages 7–17) with relapsed/refractory cancer. Parent–child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child’s final digital story. Children and parents completed the Parent–Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of P<0.05. Intervention effects were measured using Cohen’s d. Ninety-seven parent–child dyads were included for analysis. Changes in parent–child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father–child communication (Cohen’s d = -0.22–0.33). Legacy-making shows promise to facilitate improved parent–child communication, particularly for fathers.
Clinical Trials Registry: Number NCT04059393.
Huguette Le Gall, accompagnante JALMALV 35, évoque les demandes d'accompagnement de deuil lorsque la situation est atypique. Une fratrie qui n'a pas fait le deuil d'un frère qui s'est suicidé il y a 30 ans, une autre qui pleure un sportif qui n'est jamais revenu d'une expédition, autant de situations qu'il faut comprendre et accompagner avec des rites funéraires mémoriaux.
Sarah Eddy, photographe, a l'idée du Carnet des derniers voeux suite à la disparition inattendue de sa mère. Pourquoi ne pas tenir, de son vivant, un journal de bord dans lequel on puisse écrire ses voeux, ses souvenirs, mais également laisser une trace de ce qui a compté pour nous, des moments forts de notre vie, des instants qui nous ont marqués, des traits de personnalité qui nous caractérisaient ? Ce journal atypique pourrait alors servir de guide à la famille, pour apporter une aide dans l'épreuve inévitable de la mort.
Apparu en France au XVIe siècle, le tombeau poétique est un recueil collectif destiné à assurer la gloire d’un défunt, en tant que genre musical puis littéraire. En le comparant avec des équivalents étrangers (élégie anglaise, stances espagnoles ou monument russe), les contributeurs étudient les spécificités du genre et interrogent le rapport de l’art au deuil, à la mémoire et à la transmission.
Context: Keepsakes are a relatively unexplored form of bereavement support that is frequently provided as part of the 3 Wishes Project (3WP). The 3WP is a palliative care intervention in which individualized wishes are implemented in the adult intensive care unit for dying patients and their families.
Objectives: We aimed to characterize and enumerate the keepsakes that were created as part of the 3WP, and to understand their value from the perspective of bereaved family members.
Methods: We performed a secondary analysis of family interviews during a multi-center study on the 3WP and characterized all wishes that involved keepsakes. Sixty interviews with family members regarding the 3WP were re-analyzed using qualitative analysis to identify substantive themes related to keepsakes.
Results: Of 730 patients, 345 (47%) received keepsakes as part of their participation in 3WP. The majority of keepsakes were either tangible items that served as reminders of the patient’s presence (thumbprints, locks of hair) or technology-assisted items (photographs, word clouds). The median cost per keepsake wish was $8.50 (IQR $2.00-$25.00). Qualitative analysis revealed two major themes: 1) Keepsakes are tangible items that are highly valued by family members, and 2) The creation of the keepsake with clinical staff is valued and viewed as a gesture of compassion.
Conclusion: Keepsakes are common wishes that clinicians in the ICU are able to provide and sometimes co-create with families when patients are dying. Both the offering to create the keepsake and receipt of the final product are perceived by family members as helpful.
BACKGROUND: There is evidence that psychosocial and spiritual interventions of short duration, such as reminiscence therapy, provide positive impacts on quality of life and emotional and existential well-being in adults receiving palliative care.
AIM: To determine (1) the feasibility of integrating 'LIFEView', a video-based software with >1600 videos of world destinations, in palliative care settings, and (2) positive, neutral or harmful effects of using 'LIFEView' videos.
DESIGN: A mixed-methods pre-post intervention pilot study was conducted to collect feasibility and preliminary data on physical and psychological symptoms, physiological indicators, spiritual well-being and aspects of quality of life.
SETTING/PARTICIPANTS: Adult patients on an inpatient palliative care unit or receiving care from a community palliative care consultation team who were capable of providing consent and completing the outcome measures were eligible participants.
RESULTS: Overall, 27/41 (66%) participants took part in the study. Feasibility criteria, including participant acceptability, low participant burden, tool completion rate and retention rate, were fulfilled, though challenges were experienced with recruitment. Modest improvements, though non-significant, were shown on preliminary data collected on physical and psychological symptoms using the Edmonton Symptom Assessment System-revised, spiritual well-being assessed by the 12-item Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being scale and physiological measurements. Qualitative analysis revealed five themes: motivations for using 'LIFEView', perceptions of the technology, reminiscence, 'LIFEView' as an adaptable technology and ongoing or future use.
CONCLUSION: A future adequately powered study to investigate the impacts of 'LIFEView' on patient well-being and quality of life appears to be feasible.
PURPOSE: Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventions. This study explored the significance of memory-making for bereaved parents and the impact of memory-making on parents' experience of loss following neonatal loss.
DESIGN AND METHODS: We conducted semi-structured interviews with 18 bereaved parents. A grounded theory approach informed by Corbin and Strauss was used to underpin data sampling, data collection and data analysis. A constant comparative approach was used to engage in open, axial and selective coding to distil parents' stories into categories supporting a core concept.
RESULTS: "Creating evidence" emerged as a key theme in the grounded theory of memory-making in bereavement care for parents following neonatal loss. Creating evidence involved taking photographs, creating mementos, as well as involving friends and family during the baby's time in the Neonatal Unit.
CONCLUSIONS: Creating evidence affirmed the life of the baby and the role of the parents. Creating evidence was a significant element of memory-making that had a positive impact on parents' experience of bereavement.
PRACTICE IMPLICATIONS: Parents should be supported to create evidence of their baby's life, through taking photos, creating mementos, and involving others in their baby's care. Such interventions provide affirmation of the baby's life and of the individual's role as a parent.
Simon allait souvent chez sa voisine Simone qui le gardait lorsque ses parents étaient absents. Simone est morte d'un arrêt du coeur. Dans l'appartement de Simone, Simon va découvrir les secrets que renferme la théière à voeux remplie de petits papiers écrits par Simon et Simone.
Un homme atteint d'un cancer fuit son monde familier et arrive par hasard à Clermont-Ferrand. Il décide d'y rester en attendant la mort, évoquant sa vie passé à travers la prostitution, les bistrots sordides, la religion, des figures célèbres de l'histoire, du sport et de la science ou encore le destin.
Background: Motor neurone disease is a terminal neurological illness with no known cure. It is often referred to as a ‘family disease’ with the ripples causing additional implications for children and young people. As such, little is known about how to best support young people (24 years old and under) (WHO, 2019)) when a family member dies from the disease. One potential solution is through use of a digital legacy whereby videos which document a person’s life, memories and achievements are purposefully recorded by an adult during their illness. However, due to this being an emerging area of research, little is known about whether a digital legacy may support or hinder bereavement for young people affected by the disease.
Aim: To investigate healthcare professionals, specialists and experts views, perceptions and experiences of using digital legacies with bereaved young people due to motor neurone disease.
Design: A qualitative study underpinned by interpretative phenomenological analysis.
Setting/participants: Twenty healthcare professionals, specialists and experts were recruited using a maximum purposive sampling method. Open-ended interviews were conducted in participants’ place of work either over the telephone or by the lead researcher. Ethical approval was granted by a university ethics committee and Health Research Authority (HRA).
Findings: Two key overarching themes were identified from the data: perceived benefit and value for bereaved young people using a digital legacy and challenges and barriers for bereaved young people using a digital legacy.
Conclusion: A number of potential challenges and considerations were identified. However, the use of a digital legacy was perceived to be a feasible and valuable method of support for young people bereaved as a result of motor neurone disease.
A population survey finds that bereaved people draw upon diverse sources of support in their communities, from both formal services and informal networks of care. The formal service most frequently recognised by participants is provided by funeral directors. We outline some reasons for this, and explore one particular theme, memorialisation, in which funeral providers have traditionally been a lead discipline. Significant changes in memorialisation over recent decades challenge today’s funeral industry, but also draw our attention to underlying social changes reshaping our understanding not only of bereavement care but of care in general. Bereavement support is most effective when provided collaboratively by formal and informal care providers, but collaboration is challenged by policies that continue to privilege formal services over informal care. This challenge of developing constructive, respectful and complementary collaborations between formal and informal care is not peculiar to bereavement care, but is a social policy imperative for contemporary societies.
Mon petit trésor, ce livre est pour toi. Ne l'oublions pas, tu as eu une soeur, et elle restera à jamais dans nos coeurs. Tu ne pourras pas grandir à ses côtés, mais ce livre nous permettra de nous la rappeler. Ceci est son cadeau : regarde autour de toi, une luciole t'émerveillera.
Background: The 3 Wishes Project (3WP) is an end-of-life program that aims to honor the dignity of dying patients by creating meaningful patient- and family-centered memories while promoting humanistic interprofessional care.
Objective: To determine whether this palliative intervention could be successfully implemented-defined as demonstrating value, transferability, affordability, and sustainability-beyond the intensive care unit in which it was created.
Design: Mixed-methods formative program evaluation. (ClinicalTrials.gov: NCT04147169).
Setting: 4 North American intensive care units.
Participants: Dying patients, their families, clinicians, hospital managers, and administrators.
Intervention: Wishes from dying patients, family members, and clinicians were elicited and implemented.
Measurements: Patient characteristics and processes of care; the number, type, and cost of each wish; and semistructured interviews and focus groups with family members, clinicians, and managers.
Results: A total of 730 patients were enrolled, and 3407 wishes were elicited. Qualitative data were gathered from 75 family members, 72 clinicians, and 20 managers or hospital administrators. Value included intentional comforting of families as they honored the lives and legacies of their loved ones while inspiring compassionate clinical care. Factors promoting transferability included family appreciation and a collaborative intensive care unit culture committed to dignity-conserving end-of-life care. Staff participation evolved from passive support to professional agency. Program initiation required minimal investment for reusable materials; thereafter, the mean cost was $5.19 (SD, $17.14) per wish. Sustainability was demonstrated by the continuation of 3WP at each site after study completion.
Limitation: This descriptive formative evaluation describes tertiary care center-specific experiences rather than aiming for generalizability to all jurisdictions.
Conclusion: The 3WP is a transferrable, affordable, and sustainable program that provides value to dying patients, their families, clinicians, and institutions.
Primary Funding Source: Greenwall Foundation.
People’s preferences for memorializing loved ones vary and may depend on their personal attitudes and experiences with death. Participants (N = 145) completed the memorializing preferences checklist and measures of personal attitudes and life experiences with death. Factor analysis identified four memorializing preferences. In terms of predicting preferences, greater acknowledgment of death, and having experienced more losses, predicted preference for memorializing through societal tradition, community legacy, and continuing intimacy. Greater death resistance and less closeness to the deceased predicted preference for memorializing through confronting loss. Findings are discussed in terms of the range of preferences for and motivations behind memorializing.
Apprenant sa mort prochaine, trop précoce, Eve a voulu ce grand cahier pour que son aimé, ses amis, l'accompagnent vers l'inconnu. Avec ce témoignage écrit qui leur est demandé, elle fait aussi un sublime et dernier cadeau á ceux qui l'ont aimée, pour les aider dans leur propre chemin, aux confins de la vie et de la mort, du chagrin et de l'amour. Voici une contribution pour tenter de comprendre un peu le mystère du vivant, celui de l'être dans ses profondeurs, une narration pour toucher le coeur, une poésie sans illusion mais déterminée pour dire l'indicible alors même que les mots semblent vains.
De ce récit, roman poétique, roman épistolaire, le lecteur ressortira bouleversé mais gonflé d'amour, quand les larmes sécheront. Par la forme originale créant une musique des mots si pénétrante, par la puissance d'un texte semblant naître du plus profond de nos entrailles, le premier roman de Xavier Hurbin bouscule le genre et emmène le lecteur dans une expérience poignante et édifiante, déchirante et apaisante.
Background: Motor neurone disease is a progressive neurodegenerative disease without cure. Little is known about how young people are affected when a family member has the illness and subsequently dies, resulting in a gap in understanding of how best to support them. One psychotherapeutic approach involves creating a legacy to pass onto the young person, but little research has investigated the use of an emerging format, digital legacies, where videos document a person’s life, memories and achievements.
Aim: To investigate the views, perceptions and experiences of digital legacies with people affected by motor neurone disease.
Design: A qualitative study underpinned by interpretative phenomenological analysis.
Setting/participants: People living with motor neurone disease (n = 4) and bereaved young people (n = 3) in the United Kingdom. Open-ended interviews were conducted in person. Ethical approval was granted by a University ethics committee.
Results: Five key themes emerged exemplifying mutual challenges and benefits for people with motor neurone disease and bereaved young people. Creating a digital legacy provides a sense of purpose for people with motor neurone disease and a way to convey personality and life experiences. Bereaved young people can modify disease-related memories of the person and gain comfort from hearing and seeing videos.
Conclusion: This study expands the existing continuing bonds model of grief to include an ‘autobiographical chapter’, creating ‘The Model of Reciprocal Bonds Formation’.
Compared with clear-cut loss by death, ambiguous loss is defined as a loss that is not definite because the person is missing or mentally absent but physically present (e.g., through Alzheimer's disease). We expected the ambiguity of loss to show in psychologically more compromised loss memories and self-defining memories, but not in autobiographical memories in general. Thirty Chinese adults who had lost a parent through death, thirty whose parent had gone missing, and thirty who cared for a demented parent narrated their loss experiences and memories of sad and turning-point events as well as self-defining memories. Individuals with ambiguous loss narrated the loss and a self-defining memory with more contamination and fewer redemption sequences, and only the loss memory with fewer themes of agency and communion than individuals with definite loss, but not in memories of sad and turning point events. Effects of ambiguity of loss were independent of prolonged grief, which in turn independently predicted some of these effects. Thus the ambiguous quality of loss predicts effects on loss memories and self-defining memories independently of psychiatric symptoms.
Autobiographical memory has an important influence on the mental health of bereaved people. In this study, we conducted a questionnaire survey of 372 shiduers (parents who have lost their only child) to investigate the moderating role of familistic emotion in the effect of autobiographical memory function on depression and anxiety in shiduers. The results show that when either self-function or directive-function is the independent variable, familistic emotion plays a moderating role; however, when social function is the independent variable, familistic emotion does not play a moderating role. This article discusses the reasons for these results.
Cognitive decline and dementia have become major concerns for many individuals reaching later life within contemporary Western societies. This fear of decline is central to the social divide between the third age embodying ideals of maintained health, activity and lifestyle choices, and the fourth age, a social imaginary encompassing the irreversible decline associated with ageing. In this article, we explore how brain-training technologies have become successful by relying on tensions between the third and fourth ages. We review current debates on the concepts contained in brain training and examine the emphasis on the moral virtue of ‘training the brain’ in later life as an extension of fitness and health management. We underline the limited consideration given to social positioning within old age itself in the literature. We further argue that using brain-training devices can support a distancing from intimations of dementia; a condition associated with an ‘ageing without agency’. Drawing on Bourdieu, we use the concept of distinction to describe this process of social positioning. We discuss the impact that such ‘technologies of distinction’ can have on people with dementia by ‘othering’ them. We conclude that the issue of distinction within later life, particularly within the field of cognitive decline, is an important aspect of the current culture of active cognitive ageing.