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.
BACKGROUND: Medical Assistance in Dying, also known as euthanasia or assisted suicide, is expanding internationally. Canada is the first country to permit Nurse Practitioners to provide euthanasia. These developments highlight the need for nurses to reflect upon the moral and ethical issues that euthanasia presents for nursing practice.
PURPOSE: The purpose of this article is to provide a narrative review of the ethical arguments surrounding euthanasia in relationship to nursing practice.
METHODS: Systematic search and narrative review. Nine electronic databases were searched using vocabulary developed from a stage 1 search of Medline and CINAHL. Articles that analysed a focused ethical question related to euthanasia in the context of nursing practice were included. Articles were synthesized to provide an overview of the literature of nursing ethics and euthanasia.
ETHICAL CONSIDERATIONS: This review was conducted as per established scientific guidelines. We have tried to be fair and respectful to the authors discussed.
FINDINGS: Forty-three articles were identified and arranged inductively into four themes: arguments from the nature of nursing; arguments from ethical principles, concepts and theories; arguments for moral consistency; and arguments from the nature of the social good. Key considerations included nursing's moral ontology, the nurse-patient relationship, potential impact on the profession, ethical principles and theories, moral culpability for acts versus omissions, the role of intention and the nature of the society in which euthanasia would be enacted. In many cases, the same assumptions, values, principles and theories were used to argue both for and against euthanasia.
DISCUSSION: The review identified a relative paucity of literature in light of the expansion of euthanasia internationally. However, the literature provided a fulsome range of positions for nurses to consider as they reflect on their own participation in euthanasia. Many of the arguments reviewed were not nursing-specific, but rather are relevant across healthcare disciplines. Arguments explicitly grounded within the nature of nursing and nurse-patient relationships warrant further exploration.
PURPOSE: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person.
METHOD: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings.
RESULTS: The interpretive description analysis process resulted in three constructed themes-Aesthetic and un-aesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times.
CONCLUSION: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.
While the study of objects in care contexts is an emerging research field, it is largely overlooked in end of life (EoL) care. In this study, we empirically and inductively explore the roles of objects at the EoL from the perspective of bereaved family members. Open individual interviews were conducted with 25 family members recruited from palliative in-patient and homecare units, as well as residential care facilities. After verbatim transcription, the interviews were analysed thematically. Based on these interviews, we conceptualise the roles of objects as relating to temporality, transformations of the everyday, and care. Through analysis we offer two main insights, the first relating to interdependency between objects and people, and the second to the recognition of objects as simultaneously flexible and stable in this interdependent relationship. The capacity and challenge of objects as part of EoL care lies in their ability to encompass various viewpoints and relationships simultaneously. This might provide valuable insights for staff caring for dying persons and their families. We propose that staff's ability to navigate objects in care practices could be meaningful in supporting the relationships between individuals in EoL situations.
OBJECTIVE: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population.
DESIGN: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis.
SUBJECTS: The study utilized a population sample of 7684 persons aged 18-66, of which 2020 responded, stratified by gender, age and region.
RESULTS: Most participants reported 'no' ( n = 827, 41%) or 'some' ( n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as 'care before death', 'pain relief', 'dignity' and a 'peaceful death'. The preferred place of care and death was one's own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term 'palliative care' was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers.
CONCLUSIONS: This survey found limited awareness of palliative care in an adult sample of the Swedish general public = 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.
Les auteurs invitent les chercheurs en santé publique, qu'elle soit classique ou nouvelle, à travailler en partenariat pour générer et répondre au nouvel agenda de recherche autour de nouvelles initiatives de santé publique.
Les auteurs partagent idées, expériences et réflexions issues des premières phases du programme de recherche DöBra. Ils soulignent en particulier la manière dont ils travaillent avec de nouveaux publics et contribuent au développement de soins palliatifs favorisant la santé, comme un nouveau champ de recherche.
Les auteurs ont mené des interviews de réflexion à voix haute cognitives avec 25 patients atteints de cancer, avant et après la radiothérapie. Deux chercheurs ont analysé indépendamment leurs réponses à l'aide d'un schéma d'analyse basé sur des modèles de processus cognitifs.
Cet article présente le projet OPCARE9, une collaboration entre la Suède et la Slovénie pour déterminer les pratiques actuelles et les besoins futurs de soins de confort complémentaires en soins palliatifs cancéreux.