Search

BACKGROUND: Advance care planning (ACP) is a process involving conversations about values and preferences regarding future care at the end-of-life. ACP has led to positive outcomes, both in relation to quality of life and with increased use of palliative care, less life-sustaining treatment and fewer hospital admissions. Sweden has yet to embrace the practice systematically, but scattered initiatives exist. AIM: To study implementation of a routine for ACP in NH settings in Sweden by exploring healthcare professionals' experiences of engaging in ACP following this implementation. METHODS: The study followed a qualitative inductive design with convenience and snowball sampling. Semi-structured group and individual interviews with registered healthcare professionals were analysed using qualitative content analysis. FINDINGS: Organisational support for sustainable ACP implementation was found to be essential. This included sufficient training, facilitation, collaboration and uniform work routines across providers and professionals. Engaging in ACP conversations following the implemented routine was found to be a process of preparing, being, talking, deciding and sharing. CONCLUSIONS: Successful implementation of ACP in NHs requires a carefully planned implementation strategy. ACP in NHs tend to be medically focused at the expense of residents' psychosocial care-planning needs. Widespread uptake of ACP in Sweden could be useful in the national effort to adopt more person-centred care in Swedish healthcare. KEY POINTS While advance care planning has been implemented in many other countries, Sweden lacks a national strategy on advance care planning and Swedish healthcare settings have yet to systematically implement this practice. • This study is the first to report on professionals' experiences of engaging in sustainable advance care planning, following top-down implementation of the practice in one Swedish region. • Successful implementation of advance care planning

Background: Growing evidence shows that using a health promotion approach in palliative care can also have a positive impact on health outcomes in patients, their families and communities. A health promotion approach focuses on factors such as empowerment, attitude and self-efficacy that stimulate health and wellbeing and on enabling individuals to have control of these factors and to make healthy choices even when confronted with life-threatening illness. Objectives: To improve knowledge and skills to use a health promotion approach in palliative care research by 1) sharing experiences (challenges; facilitators, barriers) with the use of a health promotion approach in palliative care research and providing inspiring practices and 2) discussing the (potential) impact for people confronted with serious illness, communities, health care services and policy. This workshop will also schedule time for any questions or other ideas related to using a health promotion approach in palliative care research. Workshop format: The speakers will shortly (10’) and interactively present their work and experience with using a health promotion approach in palliative care research. Following these presentations, ideas for using a health promotion approach in future palliative care research will be discussed. For example: how to apply principles and practices of health promotion; how to co-create and design studies with the target group and other potential end-users in palliative care research? These discussions will be held in small groups i.e. one group will include both people having experience and having no experience. Afterwards, time will be scheduled for presenting the ideas back to the group., Full text license: CC BY NC

Background and Workshop Aim: Robert Kastenbaum, a U.S-based psychologist, elucidated the concept of ‘death systems’ in 1977, but it has rarely been utilized in research and practice conducted at the intercept of public health and palliative care (PHPC). In this workshop, we aim to present an overview of the death system concept, and with participants, critically examine its potential utility for researchers and practitioners working in this field. We particularly focus on the death system concept’s potential and limitations in contributing to understanding and evaluating “compassionate communities”. The Death System Concept: Kastenbaum focused on how our encounters with death are systematically related to the societies in which they occur and thus to basic ways of life. He argued that consideration of death systems allows us to be attentive to interconnections and relationships, with respect given to how cultural and societal norms, expectations, traditions, and symbols affect even individual experiences. Kastenbaum’s death system is composed of functions, ordered along a time trajectory from warnings and prediction through social consolidation after death, and each function consists of components of importance, i.e. people, place, time, symbols and objects. Workshop Approach: In this workshop, we provide a short overview of the death system concept as described by Kastenbaum, before briefly exemplifying its’ relationship to empirical work in Australia and in the Swedish DöBra research program. This introduction is intended to stimulate critical exploration with workshop participants about transferability, relevance, and limitations of the death system concept in PHPC initiatives in different settings using varying approaches. Learning objectives of this knowledge exchange include participants’ consideration of the death system concept’s benefits and limitations in: exploring impact of different PHPC initiatives, supporting EoL-related2 cross-cultural understandings, Full text license. CC BY NC

Background: Games like the GoWish cards, from the US, have been found useful to support people in reflecting about their end-of-life preferences. Because card games like GoWish are culturally sensitive, we aimed to perform a systematic cultural adaptation of the cards for use in Flanders, Belgium involving multiple stakeholders. Methods: We used an iterative cultural adaptation process with repeated discussions with various community organizations and representatives of minority and religious groups. Next, the cards were evaluated in relation to: linguistic equivalence to original version, applicability, comprehensibility, and relevance per card. Based on the evaluation for each item the content validity index (I-CVI) was calculated with >0,78 as minimum required score. The translated version was tested with potential users. Their feedback and items with a I-CVI of <0,78 were used for final adjustments. Results: After translation, the organizations and representatives of minorities and religions made cultural adaptations to nine cards (e.g. “accomplishments” was changed to “memories” since this was deemed more appropriate in our culture). Because of the legal context in Belgium, two cards were added: “a self-chosen end of life” and “being able to record my choices”. The modified version was reviewed by 12 healthcare workers. 28/38 cards had an I-CVI score >0.78 on all four items. Potential users (n = 33) felt that the cards supported conversations about end-of-life preferences. Based on the ten cards with a I-CVI <0.78 and feedback from potential users, the wording of four cards was reformulated. Conclusion: Using a systematic process of cultural adaptation involving multiple stakeholders, we were able to identify detailed adjustments needed to achieve cultural adaptations appropriate for use of the cards in Flanders. The strength of the adaptation process lies in the multiple perspectives using different methods throughout the process., Full text license: CC BY NC

Background: There is growing interest in community-based advance care planning (ACP) interventions, but few studies investigate the societal impact of such initiatives. A Swedish adaptation of the GoWish cards, the DöBra cards, were used as a tool in the SweACP participatory action research project with older people in the community, without imminent End-of-Life (EoL) care needs. Due to popular demand, the DöBra cards were later made available to the general public as a social innovation. Aim: To explore how the publicly available DöBra cards have been disseminated and used without researchers’ engagement, to provide a basis for understanding their impact in a wider community setting. Methods: Using a Ripple Effects Mapping approach, we followed three chains of dissemination of the DöBra cards originating from a patient organization, a national interest organization for older people, and a health care organization. Data were collected through interviews with 20 participants and analyzed with directed content analysis. Results: A variety of strategies for use were noted, as the DöBra cards were adapted to fit needs in different personal, professional, and organizational settings. The cards were found to act as both a means to raise awareness about EoL issues in different contexts, as well as an end in themselves, e.g. by facilitating ACP conversations for people with serious disease. However, in some instances, resistance to use or promotion of the DöBra cards was also described. Impact included personal development as well as strengthened personal and professional relationships, with potential to affect EoL care provision. Conclusions: The primarily positive perspectives and broad dissemination of the DöBra cards in a variety of contexts beyond those controlled by researchers, has led to capacity building in dealing with EoL issues in the community, as the topic of dying and death has been brought to agendas in new contexts., Full text license: CC BY NC

Sweden has no systematic advance care planning (ACP), nor legal recognition of end-of-life proxies. We describe our experiences and reflections from a participatory action research process, aiming at developing and initially using a conversation-based, structured ACP approach among community-dwelling, older adults in Sweden. Eco-mapping and DoBra cards were used with 65 people to catalyze discussions on preferences for the end-of-life. We found great individual variation in both Eco-map depictions of social networks and prioritization of the 37 DoBra card items. The DoBra cards were concluded to be a viable tool for stimulating person-centered conversations on preferences for future end-of-life care.

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. Methods: This qualitative study is based on interviews with 31 self-defined Sámi adults who used DöBra cards at four events targeting the Sámi population, between August 2019 and February 2020. Using directed content analysis, we examined aspects of interviews addressing Sámi-specific and Sámi-relevant motivations for choices. Data about individuals’ card rankings were collated and compiled on group level to examine variation in card choices. Findings: All 37 pre-formulated card statements were ranked as a top 10 priority by at least one person. The cards most frequently ranked in the top 10 were a wild card used to formulate an individual preference and thus not representing the same statement, and the pre-formulated card ‘to have those I am close to around me’. Reactions to interviews varied, with some participants commenting on the taboo-laden nature of discussing EoL issues, although many commented positively about EoL conversations in general, and the benefit of using the DöBra cards in particular. We categorised reasoning about Sámi-specific and Sámi-relevant values and preferences under the themes: Attributes of contemporary Sámi culture, Spirituality, Setting for death, Maintaining identity, Preferences related to death, Dying and EoL care and After death. Conclusions: The DöBra cards were found to be easy-to-use, understandable and a flexible tool for initiating and supporting conversations about EoL values and preferences. The open formulations of cards, with wild cards, enable discussions about individual va

Introduction: Advance care planning has been described as a process of reflection and discussion about values and preferences for future end-of-life care. In Sweden, advance care planning is rarely systematically practiced and virtually unheard of among the general public. Furthermore, the Swedish context provides no judicial support for appointing proxy decision- makers or documenting legally binding advance directives. Thus, Sweden presents a context for advance care planning which is quite different from that in other countries where advance care planning has generally been studied. We therefore conceptualized an approach to advance care planning built on three cornerstones, as it involved early initiation of a conversation-based intervention targeting mostly older adults in the community. Aims: The overarching aim of this thesis was to explore a structured intervention for advance care planning conversations about individual values and preferences for future end-of-life care among community-dwelling, older adults. Methods: The project was planned with inspiration from participatory action research and data were mainly derived from qualitative interviews. A first database consists of initial interviews with 65 actively volunteering individuals (sub-studies I-III) and follow-up interviews with 59 of them 5-12 months later (III). Interviews at both time-points explored who and what individuals thought would be important to them at the end-of-life. This was explored initially with open questions followed by use of EcoMaps to map individuals’ social networks and a Swedish version of the GoWish cards, the DöBra cards, to discuss values and preferences for future end-of-life care. The translated and adapted DöBra cards contain 37 statements about that which may be important at the end-of-life, and wild cards to freely formulate any other individual preferences. While discussing their choices, participants were encouraged to sort and finally rank their 10 most important

Introduction: Advance care planning has been described as a process of reflection and discussion about values and preferences for future end-of-life care. In Sweden, advance care planning is rarely systematically practiced and virtually unheard of among the general public. Furthermore, the Swedish context provides no judicial support for appointing proxy decision- makers or documenting legally binding advance directives. Thus, Sweden presents a context for advance care planning which is quite different from that in other countries where advance care planning has generally been studied. We therefore conceptualized an approach to advance care planning built on three cornerstones, as it involved early initiation of a conversation-based intervention targeting mostly older adults in the community. Aims: The overarching aim of this thesis was to explore a structured intervention for advance care planning conversations about individual values and preferences for future end-of-life care among community-dwelling, older adults. Methods: The project was planned with inspiration from participatory action research and data were mainly derived from qualitative interviews. A first database consists of initial interviews with 65 actively volunteering individuals (sub-studies I-III) and follow-up interviews with 59 of them 5-12 months later (III). Interviews at both time-points explored who and what individuals thought would be important to them at the end-of-life. This was explored initially with open questions followed by use of EcoMaps to map individuals’ social networks and a Swedish version of the GoWish cards, the DöBra cards, to discuss values and preferences for future end-of-life care. The translated and adapted DöBra cards contain 37 statements about that which may be important at the end-of-life, and wild cards to freely formulate any other individual preferences. While discussing their choices, participants were encouraged to sort and finally rank their 10 most important

Sweden has no systematic advance care planning (ACP), nor legal recognition of end-of-life proxies. We describe our experiences and reflections from a participatory action research process, aiming at developing and initially using a conversation-based, structured ACP approach among community-dwelling, older adults in Sweden. Eco-mapping and DoBra cards were used with 65 people to catalyze discussions on preferences for the end-of-life. We found great individual variation in both Eco-map depictions of social networks and prioritization of the 37 DoBra card items. The DoBra cards were concluded to be a viable tool for stimulating person-centered conversations on preferences for future end-of-life care.