Studio DöBra is a community-based initiative in which children (9 y/o) and older adults (mostly 80+) engaged with topics related to dying, death and loss through shared arts activities (e.g. collage, sculpture, games). In an ageing society, Sweden's end-of-life (EoL) care is increasingly professionalised and specialised, but there is little community involvement. One goal of Studio DöBra was therefore to support community engagement with EoL-related topics. Another goal was to create opportunities for interaction between children and older adults as there are few intergenerational meeting places. Two iterations of Studio DöBra were developed (2016, 2018) in different Swedish cities, utilising a community-based participatory research approach. Project groups comprised first author MK and representatives of community organisations such as meeting places for older adults, after-school centres and artistic organisations. Each iteration engaged eight children and eight older adults in a series of five workshops. This article investigates how children and older adults motivate their participation, their experiences of participating and ways in which they were affected by participation. We also investigate how parents reflect on their child's participation in Studio DöBra. Older adults, children and their parents were interviewed after each Studio DöBra. An inductive qualitative process guided by interpretive description was used to analyse the transcripts. Findings indicate that participants acted as individuals with agency in connecting across generations and in creating spaces for engaging with EoL-topics, not only in Studio DöBra but also in their social networks. Participants reflected on a changing sense of community through new intergenerational connections and social activities, and expressed a desire to maintain these. However, participants indicated sustainability challenges related to lacking agency in maintaining these spaces and sense of intergenerational community, as they rely on support from community organisations.
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 jeune garçon qui a des difficultés scolaires (DYS) apprend que son grand-père, atteint de la maladie d'Alzheimer, va être placé en maison de retraite. Il décrit le passé d'explorateur de son grand-père puis décide avec son camarade de classe, un garçon émigré d'Irak, de sauver son grand-père en partant à la recherche de la grand-mère disparue.
Suite à l’annonce de la maladie grave de son grand-père, Garance réalise qu’elle ne sait pas grand-chose de lui, notamment de sa jeunesse et des circonstances qui l’ont mené loin de son pays natal, le Cambodge. Comme pour rattraper ou rallonger le temps, elle lui rend visite aussi souvent que possible et l’interroge sur son passé. Ce passé qui risque bien de changer sa propre vie et sa relation avec ses parents.
Lucas n'a plus que des souvenirs de son grand-père. Ce dernier lui parlait souvent d'un endroit lointain, là où l'océan rencontre le ciel. Pour ne pas l'oublier, le jeune garçon décide de construire un bateau et démarre un long voyage pour surmonter son deuil.
Très poétique, cet album aborde l'absence et ce que les grands-parents laissent à leurs petits-enfants : leurs passions.
C'est l'histoire d'un jeune homme de 17 ans, Parker Santé. Depuis le décès de son père il y a 5 ans, il n'a pas prononcé un mot. Pendant que ses camarades de classe postulent à l'université, lui sèche les cours du lycée et traîne dans les hôtels chics de San Francisco pour parfaire sa technique de pickpocket. Un jour, il rencontre Zelda Toth aux cheveux argentés. Il dérobe de l'argent dans son sac à main. Mais il est très surpris, elle ne le dénonce pas et lui dit qu'elle n'en aura bientôt plus l'utilité. Le livre décrit leur cheminement commun pour redonner goût à la vie l'un à l'autre.
Rouge, jeune femme mystérieuse et désenchantée, cherche à aider sa grand-mère Rose, qui vient de perdre son mari. Afin de rompre le mutisme de la vieille dame, elle recourt à son tandem, un élément indissociable de leur vie et de leurs souvenirs.
The aging population in the United States is predicted to become one fifth of the population by 2050. With that increase, more individuals in the country will be experiencing chronic health conditions and the need for care, with end of life (EoL) becoming more of a topic that needs to be discussed. This study aims to explore the ways adult children talk to their parents about EoL, death, and dying. We discovered six themes: protection, meeting needs, guilt and regret, control, family dynamics, and communication type. Each of these was prevalent in responses to how adult children cope, how they cared for their parent, and how hope played into the interactions. We believe these themes will be helpful in developing a quantitative scale to study EoL further and be practical in helping adult children cope following death of their parent.
Children receiving palliative care services are held within the context of a family and often within multiple-generational arms. The purpose of this case series paper is to recognize grandparents' roles in their family system from a personal, cultural, and anthropological perspective; to explore emotions and experiences as applies to grandparents of children receiving palliative care; and to provide tangible insight into caring well for families across the generational arc.
While people are still alive, we owe them respect. Yet what, if anything, do we owe the newly dead? This question is an urgent practical concern for aged societies, because older people die at higher rates than any other age group. One novel way in which Japan, the frontrunner of aged societies, meets its need to accommodate high numbers of newly dead is itai hoteru or corpse hotels. Itai hoteru offer families a way to wait for space in over-crowded crematoriums while affording an environment conducive to grieving. Drawing on conversations with itai hoteru employees, we delineate the values this contemporary death practice expresses and show how these values comprise part of the broader idea of a good death. A good death implies duties on both sides of death's divide: to both the dying and the newly dead.
La maman et sa petite fille, Clotilde, ont l'habitude de partager de bons moments avec le cerisier du jardin. Mais un jour tout bascule. La maman est atteinte d'un cancer du sein. Le parallèle est fait entre la vie du cerisier tout au long des quatres saisons et le combat de la maman contre la maladie, la chute des feuilles du cerisier et la chute des cheveux de la maman à cause des chimiothérapies. Le combat contre la maladie est comparé à la guerre des tranchées. Malgré la maladie et ses difficultés, c'est une belle bouffée d'optimisme.
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.
Purpose of the Study: Adult daughters providing care to aging, ill mothers comprise the most prevalent caregiving dyad. Little is known, however, regarding relationship quality and its impact on care in these dyads, particularly in the context of cognitively intact patients at end of life in hospice. This interpretive descriptive work privileges voices of terminally ill mothers and care-partnering daughters in the home hospice context. Specific aims were to describe and interpret how mothers and daughters: (a) perceive relationship quality and (b) perceive how relationships have developed over time through health, chronic illness, and hospice.
Design and Methods: Semistructured interviews were used to explore interdependent perceptions of relationship quality in 10 terminally-ill mother-adult daughter care dyads. A novel method of qualitative dyadic analysis was developed to analyze dyads in close parallel at both individual/descriptive and dyadic/interpretive levels, staying true to qualitative rigor.
Results: A relationship quality spectrum emerged, from Close Friendship to Doing My Duty dyads. Women in Close Friendships revealed concordant narratives and emotionally satisfying relationships; women in neutral or troubled relationships revealed discordant relational stories. In these latter dyads, mothers reported more positive narratives; daughters spoke of relational problems.
Implications: This work suggests deeper exploration of mother-daughter dyads within the hospice context and interventions at both individual and dyadic levels to serve relational needs of the dying and their families. The qualitative dyadic approach also offers utility for relational investigations of any dyad.
Purpose: The purpose of this study was to longitudinally explore the experiences of young adult, adult, and older adult intergenerational caregivers caring for a parent with end-stage heart failure (HF).
Design: This study was a secondary analysis of qualitative data collected during a longitudinal study that sought to determine the palliative care needs of individuals with end-stage HF and their family caregivers. Methods: Longitudinal interviews from 23 young adult, adult, and older adult children who were caring for a parent with end-stage HF were selected for thematic analysis. Researchers individually analyzed the interviews and then, as a group, came to a consensus about themes. Findings: Five major themes were identified: caregiver resources, role management, caregiver-parent relationships, filial responsibility, and personal benefits and challenges.
Conclusions: These intergenerational caregivers struggled to balance their busy lives and caregiving roles. However, most felt supported by other family members or external resources. Longitudinal findings support a need for improved employer-based support for intergenerational caregivers and special attention to young carers in research and practice. Recognition of and advocacy for intergenerational caregivers providing care for a chronically ill parent is needed.
Traditionally, family-focused care extends to parents and siblings of children with life-limiting conditions. Only a few studies have focused on the needs of grandparents, who play an important role in the families of children with illness and with life-limiting conditions, in particular. Interpretative phenomenological analysis was used as the methodological framework for the study. Seven bereaved grandparents participated in this study. Semistructured, individual, face-to-face interviews were conducted. A number of contextual factors affected the experience of bereaved grandparents, including intergenerational bonds and perceived changes in role following the death of their grandchild. The primary motivation of grandparents stemmed from their role as a parent, not a grandparent. The breadth of pain experienced by grandparents was complicated by the multigenerational positions grandparents occupy within the family. Transition from before to after the death of a grandchild exacerbated the experience of pain. These findings about the unique footprint of grandparent grief suggest the development of family nursing practice to better understand and support grandparents during the illness of a grandchild, in addition to bereavement support.
AIM: To increase understanding of grandparental grief following the death of a grandchild from a life-limiting condition.
DESIGN: META-ETHNOGRAPHY: DATA SOURCES: Academic Search Complete (2015, updated 2018), CINHAL, Embase, psycINFO, PubMed and Web of Science, supplemented by manual search strategies.
REVIEW METHODS: Studies were appraised and synthesised using the principles of meta-ethnography.
FINDINGS: Three superordinate themes were identified: 'influence of the relationship with their grandchild', 'influence of the relationship with the grandchild's family' and 'pain'. The simultaneous, multi-generational position of grandparents meant individuals experience emotional pain from witnessing the experience of family members.
CONCLUSION: Many factors that contribute to the bereavement experience of grandparents are outside of their control. The roles, positions and support needs of grandparents need to be acknowledged to better meet their needs as parents, grandparents and individuals who have experienced a child death.
PURPOSE: Migrants experience challenges settling into a new society, while retaining their cultural and religious values. Concurrently facing an end-of-life illness can result in existential distress affecting quality of dying. This study aimed to explore the lived experience of migrants dying away from their country of birth or origin.
METHODS: The study design used a phenomenological approach using Heidegger's philosophy to gather and interpret dying migrants' stories. Participants were a purposive sample of New Zealand immigrants experiencing end-of-life illness and under hospice care. Participants were interviewed at home. Coherent stories were drawn from the transcribed interviews and analysed using iterative methods. Interpretive notions were formed through contemplation and writing.
RESULTS: The ten participants, seven males and three females, were of different ethnicities and countries of origin. Three notions emerged. The first was dual possession of a new hybrid identity developed in their adoptive country, and an inner ethnic and cultural identity, in varying degrees of harmony with each other. The second was being in life review-reliving homeland memories and letting go of dreams. The third notion showed how they sought resolution by enacting continuity through their children, hoping for a final homeland visit, or conveying their dying wishes.
CONCLUSIONS: How life review was enacted for each migrant and resolution depended on finding some degree of belonging in their country of adoption. Implications for end-of-life care include education to increase practitioner awareness and use of formal and informal life review. Enhancing spiritual well-being can assist resolution of end-of-life adjustment.
This study explored the perceived goals, barriers, and strategies that characterize family interactions about advance care planning (ACP), which is instrumental in guiding end-of-life care. Discussions within the family context can significantly improve end-of-life decision making but are complicated, partly because participants are attempting to achieve multiple, and often competing, goals. Participants (n = 75) responded to a hypothetical scenario about a conversation with a parent about ACP by completing an anonymous online survey. Respondents described their conversational goals, anticipated barriers, and strategies they thought would be helpful. Thematic data analysis identified four dilemmas participants faced while attempting to achieve multiple, conflicting goals: (1) the desire to make the parent feel wanted while discussing them not being around; (2) the need to be gentle but still direct; (3) the practical necessity of designating one decision-maker without provoking family conflict; and (4) the desire to lessen the burden on the designated decision-maker by providing necessary information while still placing them in a decision-making role. Participants reported using several strategies to manage these complex dilemmas. These findings provide support for the utility of Goldsmith's normative theory of social support in the context of discussions about ACP. The results also provide a foundation for developing conversational guides to facilitate high-quality family conversations about ACP between adult children and their parents.
This study aims to identify parenting experiences after the death of a child. Using interpretive phenomenological analysis, we mapped the experiences of 16 parents with school-aged surviving children after the death of their sibling to the 2014 Sewol ferry disaster in South Korea. Interviews illuminate five master themes of parenting surviving children following a child’s death: (a) parental anxiety, (b) conflicts and obstacles in the parent-child relationship, (c) changes in parenting style, (d) striving to support children’s grief, and (e) seeking outside help for parenting. Implications for supporting grieving parents and their children are discussed in light of the findings.