Validation of a culturally adapted Swedish-language version of the Death Literacy Index.

The death literacy index (DLI) was developed in Australia to measure death literacy, a set of experience-based knowledge needed to understand and act on end-of-life (EOL) care options but has not yet been validated outside its original context. The aim of this study was to develop a culturally adapted Swedish-language version of the DLI, the DLI-S, and assess sources of evidence for its validity in a Swedish context. The study involved a multi-step process of translation and cultural adaptation and two validation phases: examining first content and response process validity through expert review (n = 10) and cognitive interviews (n = 10); and second, internal structure validity of DLI-S data collected from an online cross-sectional survey (n = 503).

Medical Assistance in Dying: A Review of Canadian Health Authority Policy Documents.

The purpose of this study was to describe policies developed by English-speaking Canadian health authorities to guide multi-disciplinary healthcare practice in the context of MAID. Seventeen policies from 9 provinces and 3 territories were identified and analyzed thematically. Themes developed from these documents related to ensuring a team approach to care, supporting informed patient choice, creating region-specific guidance on eligibility criteria and safeguards, accommodating conscientious objection, and making explicit organizational responsibilities.

The cultural adaptation of the go wish card game for use in Flanders, Belgium: a public health tool to identify and discuss end-of-life preferences.

Background: Public health tools like the Go Wish card game from the US, have been found useful to support people in reflecting on their end-of-life preferences, but a cultural adaptation is essential for their success. In the present study, we explore the necessary cultural adaptations to the Go Wish cards by applying an extensive, systematic, and community-engaging negotiating procedure to facilitate the use of the cards in the general population of Flanders, Belgium.

Methods: We used an iterative cultural adaptation process with repeated discussions with various community organizations and representatives of minority and religious groups.

The call-bell in residential care homes: Experiences of residents and staff.

Background/objectives: Call-bells are often taken-for-granted systems to heighten safety. In joint discussions among residential care home (RCH) residents, their family members, and staff, issues related to call-bell use in everyday life and work were repeatedly raised. In this article, we explore these experience-based perspectives, addressing several key questions important for call-bell use and communication.

A Qualitative Serial Analysis of Drawings by Thirteen-to Fifteen-Year-Old Adolescents in Sweden About the First Wave of the Covid-19 Pandemic.

In this article, we explore the perspectives of 13-15-year-olds living in Sweden about the first wave of the Covid-19 pandemic, through inductive analysis of 187 of their drawings. Through reconstructive serial picture analysis, three types of meaning were derived: (1) points to the disruption of daily life and development of new praxis and meaning in a context of threat and restriction; (2) refers to these adolescents' self-portrayal as solitary, without adult guidance or friends prominent; and (3) addresses a range of negative emotions and expressions of loss with few proactive strategies illustrated. General existential distress appears in these drawings, seemingly compounded by both developmental stage and other factors in addition to the pandemic context.

Conceptualizing impact in community-based participatory action research to engage communities in end-of-life issues.

Background: A health promotion approach to end-of-life (EoL) care is gaining traction internationally. However, there is a lack of evaluations of the impact of this approach, particularly regarding community-based initiatives. Conceptualizations of impact in participatory action research (PAR) may contribute to understanding ways in which impact can be investigated in community-based health promotion approaches to EoL issues.

Engagement of specialized palliative care services with the general public: A population-level survey in three European countries.

Background: There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices.

Aim: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK.

Values and preferences for future end-of-life care among the indigenous Sámi.

Intoduction: Research with Indigenous peoples internationally indicates the importance of socio-cultural contexts for end-of-life (EoL) preferences. However, knowledge about values and preferences for future EoL care among the Indigenous Sámi is limited.

Aim: We investigated if and how a Swedish adaptation of the English-language GoWish cards, DöBra cards, supports reflection and discussion of values and preferences for future EoL care among the Sámi.

Same, same, but different? A longitudinal, mixed-methods study of stability in values and preferences for future end-of-life care among community-dwelling, older adults.

Background: End-of-life preferences may change over time, e.g. due to illness progression or life events.

Dissemination, use, and impact of a community-based, conversational advance care planning intervention: ripple effects of the Swedish DöBra cards.

Introduction & Aim: Despite increasing interest in community-based advance care planning interventions, few studies investigate the societal impact of such initiatives. The DöBra cards, a Swedish adaptation of the GoWish cards, were first used for advance care planning conversations in a participatory action research project and later, due to popular demand, made available for purchase by the general public. We explore how the DöBra cards were disseminated and used publicly, to understand their impact in the community.

A Salutogenic Perspective on End-of-Life Care among the Indigenous Sámi of Northern Fennoscandia.

There is limited empirical data about both health and end-of-life (EoL) issues among the Indigenous Sámi of Fennoscandia. We therefore aimed to investigate experiences of EoL care and support among the Sámi, both from the Sámi community itself as well as from more formalized health and social care services in Sweden. Our primary data source is from focus group discussions (FGDs) held at a Sámi event in 2017 with 24 people, complemented with analysis of previously collected data from 15 individual interviews with both Sámi and non-Sámi informants familiar with dying, death and bereavement among Sámi; "go-along" discussions with 12 Sámi, and individual interviews with 31 Sámi about advance care planning.

Play Elements as Mechanisms in Intergenerational Arts Activities to Support Community Engagement with End-of-Life Issues.

Talking about dying, death, and loss may be difficult. Arts offer alternative ways of engaging with end-of-life (EoL) issues, but little is known about the means through which this occurs. In this article, we aim to explore mechanisms in arts activities that support community engagement with EoL issues, based on the community-based participatory action research project Studio DöBra.

Fearing fear itself: Crowdsourced longitudinal data on Covid-19-related fear in Sweden.

Background: The Covid-19 pandemic has had unprecedented effects on individual lives and livelihoods as well as on social, health, economic and political systems and structures across the world. This article derives from a unique collaboration between researchers and museums using rapid response crowdsourcing to document contemporary life among the general public during the pandemic crisis in Sweden.

Methods And Findings: We use qualitative analysis to explore the narrative crowdsourced submissions of the same 88 individuals at two timepoints, during the 1st and 2nd pandemic waves, about what they most fear in relation to the Covid-19 pandemic, and how their descriptions changed over time.

Continuums of Change in a Competence-Building Initiative Addressing End-of-Life Communication in Swedish Elder Care.

Conversations about values for the end-of-life (EoL) between residents, relatives, and staff may allow EoL preparation and enable value-concordant care, but remain rare in residential care home (RCH) practice. In this article, longitudinal qualitative analysis was used to explore changes in staff discussions about EoL conversations throughout workshop series based on reflection and knowledge exchange to promote EoL communication in RCHs. We identified three overall continuums of change: EoL conversations became perceived as more feasible and valuable; conceptualizations of quality EoL care shifted from being generalizable to acknowledging individual variation; and staff's role in facilitating EoL communication as a prerequisite for care decision-making was emphasized.

Sensations, symptoms, and then what? Early bodily experiences prior to diagnosis of lung cancer.

Lung cancer (LC) generally lacks unique core symptoms or signs. However, there are a multitude of bodily sensations that are often non-specific, not easily understood, and many times initially not recognized as indicative of LC by the affected person, which often leads to late diagnosis. In this international qualitative study, we inductively analyzed retrospective accounts of 61 people diagnosed with LC in Denmark, England and Sweden.

Using narrative analysis to explore traditional Sámi knowledge through storytelling about End-of-Life.

In this narrative study, we investigate salient Sámi-specific aspects of a death system, inspired by Kastenbaum's model. We explore traditional Sámi knowledge derived through storytelling in go-along group discussions to gravesites at the tree-line with cultural and historical significance for the Indigenous Sámi peoples. Analysis illustrates how important material and immaterial cultural values are transferred across generations through their connection to people, place, and time-nature-bound as opposed to calendar-bound- objects, and symbols in relation to end-of-life issues.

Constructing Good Nursing Practice for Medical Assistance in Dying in Canada: An Interpretive Descriptive Study.

Nurses play a central role in Medical Assistance in Dying (MAiD) in Canada. However, we know little about nurses' experiences with this new end-of-life option. The purpose of this study was to explore how nurses construct good nursing practice in the context of MAiD.

Between a rock and a hard place: Registered nurses' accounts of their work situation in cancer care in Swedish acute care hospitals.

Purpose: Hospital organizational features related to registered nurses' (RNs') practice environment are often studied using quantitative measures. These are however unable to capture nuances of experiences of the practice environment from the perspective of individual RNs. The aim of this study is therefore to investigate individual RNs' experiences of their work situation in cancer care in Swedish acute care hospitals.

Death, loss and community-Perspectives from children, their parents and older adults on intergenerational community-based arts initiatives in Sweden.

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).