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- Beck, Simon, et al.
(författare)
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Implementing advance care planning in Swedish healthcare settings–a qualitative study of professionals’ experiences
- 2023
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Ingår i: Scandinavian Journal of Primary Health Care. - : Taylor and Francis Ltd.. - 0281-3432 .- 1502-7724. ; 41:1, s. 23-32
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Tidskriftsartikel (refereegranskat)abstract
- 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 in nursing homes requires a system-level approach, and shortcomings of the implementation process are highlighted.
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- Deliens, Luc, et al.
(författare)
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Using a health promotion approach in palliative care research
- 2022
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Ingår i: 7th Public Health Palliative Care International Conference. Democratizing caring, dying and grieving: participation, action, understanding and evaluation. - : Sage Publications.
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Konferensbidrag (refereegranskat)abstract
- 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.
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- Dupont, Charlèss, et al.
(författare)
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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
- 2022
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Ingår i: BMC Public Health. - : Springer Nature. - 1471-2458. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundPublic 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.MethodsWe used an iterative cultural adaptation process with repeated discussions with various community organizations and representatives of minority and religious groups. After that, the cards were evaluated by 12 healthcare professionals in relation to: linguistic equivalence to the original version, applicability, comprehensibility, and relevance per card. Additional testing with potential users preceded final adjustments.ResultsWe found that stakeholders were keen to engage throughout the process of cultural adaptation and we were able to make a range of cultural adaptations for the use of the cards in Flanders. All original statements were rephrased from passive to more active statements. Sixteen out of 36 cards were adjusted to make them more culturally appropriate for use in Flanders, e.g., “to meet with clergy or a chaplain” to “having a spiritual counselor as support.” Three new cards were added: two with statements appropriate to the Belgian patient rights and euthanasia legislation and one extra Wild Card. Potential users (n = 33) felt that the cards supported conversations about end-of-life preferences.ConclusionBy making community engagement a cornerstone of our adaption process, we developed a card set that potential end-users considered a supportive public health tool for reflecting and discussing end-of-life values and preferences. The described process is particularly valuable for culturally adapt interventions, especially given that community engagement in adapting interventions is essential to creating grounded interventions.
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- Dupont, Charlèss, et al.
(författare)
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The cultural adaptation of the GoWish cards for use in Flanders, Belgium: a game to identify and discuss end-of-life preferences
- 2022
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Ingår i: 7th Public Health Palliative Care International Conference. Democratizing caring, dying and grieving: participation, action, understanding and evaluation. - : Sage Publications.
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Konferensbidrag (refereegranskat)abstract
- 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.
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- Eneslätt, Malin, et al.
(författare)
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Dissemination, Use and Impact of a Community-based Advance Care Planning Intervention: Ripple Effects of the Swedish DöBra cards
- 2022
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Ingår i: 7th Public Health Palliative Care International Conference. Democratizing caring, dying and grieving: participation, action, understanding and evaluation. - : Sage Publications.
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Konferensbidrag (refereegranskat)abstract
- 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.
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- Eneslätt, Malin, et al.
(författare)
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Dissemination, use, and impact of a community-based, conversational advance care planning intervention: ripple effects of the Swedish DöBra cards
- 2021
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Ingår i: Palliative Care and Social Practice. - : Sage Publications. - 2632-3524. ; 15
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Tidskriftsartikel (refereegranskat)abstract
- 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.Methods: We used Ripple Effects Mapping to follow three dissemination ripples, based on interviews with 20 participants, analyzed with directed content analysis.Findings: Key factors influencing dissemination of the DöBra cards included ‘champions’ with a mandate within their context or organization, policy documents including use of the cards, media coverage, and presentations of the cards in various settings. The DöBra cards were adapted for use individually and in groups in different private, professional, and organizational settings. Perceived benefits of the cards included acting as an icebreaker in initiating end-of-life conversations and having preformulated statements to reflect upon. Other positive experiences included discussions on different interpretations of card statements, thus opening new perspectives regarding end-of-life. The DöBra cards functioned both as means to raise end-of-life issues in different contexts, and as an end in themselves, for example, by facilitating advance care planning conversations for those with serious disease. Impact also included personal development and strengthening of private and professional relationships, with potential to affect end-of-life care.Conclusion: The broad dissemination of the DöBra cards influenced capacity-building in dealing with end-of-life issues in communities, as the topic of dying and death was brought to agendas in new contexts.
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- Eneslätt, Malin, et al.
(författare)
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Dissemination, Use and Impact of a Community-based, Conversational Advance Care Planning Intervention: Ripple Effects of the Swedish DöBra cards
- 2021
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 35:1_suppl
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- 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 in a patient organization, a national interest organization for older people, and in 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. Resistance, from various instances, to use or promotion of the DöBra cards was however also found. Impact included personal development as well as strengthened personal and professional relationships, with potential to affect EoL care provision.Conclusions: The 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.
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