Change search
Refine search result
1 - 32 of 32
CiteExportLink to result list
Permanent link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Rows per page
  • 5
  • 10
  • 20
  • 50
  • 100
  • 250
Sort
  • Standard (Relevance)
  • Author A-Ö
  • Author Ö-A
  • Title A-Ö
  • Title Ö-A
  • Publication type A-Ö
  • Publication type Ö-A
  • Issued (Oldest first)
  • Issued (Newest first)
  • Created (Oldest first)
  • Created (Newest first)
  • Last updated (Oldest first)
  • Last updated (Newest first)
  • Disputation date (earliest first)
  • Disputation date (latest first)
  • Standard (Relevance)
  • Author A-Ö
  • Author Ö-A
  • Title A-Ö
  • Title Ö-A
  • Publication type A-Ö
  • Publication type Ö-A
  • Issued (Oldest first)
  • Issued (Newest first)
  • Created (Oldest first)
  • Created (Newest first)
  • Last updated (Oldest first)
  • Last updated (Newest first)
  • Disputation date (earliest first)
  • Disputation date (latest first)
Select
The maximal number of hits you can export is 250. When you want to export more records please use the Create feeds function.
  • 1.
    Beck, Simon
    et al.
    Dalarna University, Sweden.
    Lundblad, Lina
    Dalarna University, Sweden.
    Göras, Camilla
    Dalarna University, Sweden.
    Eneslätt, Malin
    Luleå University of Technology, Department of Health, Education and Technology, Nursing and Medical Technology.
    Implementing advance care planning in North Sweden healthcare settings – a study of professionals’ experiences2023In: Abstractkatalog Norrskenskonferensen 2023, Region Jämtland Härjedalen , 2023, p. 71-Conference paper (Refereed)
  • 2.
    Beck, Simon
    et al.
    School of Health and Welfare, Dalarna University, Falun, Sweden.
    Lundblad, Lina
    School of Health and Welfare, Dalarna University, Falun, Sweden.
    Göras, Camilla
    School of Health and Welfare, Dalarna University, Falun, Sweden.
    Eneslätt, Malin
    Luleå University of Technology, Department of Health, Learning and Technology, Nursing and Medical Technology. Department of Learning, Informatics, Management, and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Implementing advance care planning in Swedish healthcare settings–a qualitative study of professionals’ experiences2023In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 41, no 1, p. 23-32Article in journal (Refereed)
    Abstract [en]

    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.

    Download full text (pdf)
    fulltext
  • 3.
    Deliens, Luc
    et al.
    Vrije Universiteit Brussel (VUB) & Ghent University, End-of-life Care Research Group, Brussels, Belgium.
    Scheerrens, Anne-Lore
    Vrije Universiteit Brussel (VUB) & Ghent University, End-of-life Care Research Group, Brussels, Belgium; Ghent University, Health Promotion Unit, Ghent, Belgium.
    Matthys, Marjolein
    Vrije Universiteit Brussel (VUB) & Ghent University, End-of-life Care Research Group, Brussels, Belgium; Ghent University, Health Promotion Unit, Ghent, Belgium.
    Eneslätt, Malin
    Luleå University of Technology, Department of Health, Education and Technology, Nursing and Medical Technology. Department of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet.
    Using a health promotion approach in palliative care research2022In: 7th Public Health Palliative Care International Conference. Democratizing caring, dying and grieving: participation, action, understanding and evaluation, Sage Publications, 2022, article id 208Conference paper (Refereed)
    Abstract [en]

    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.

    Download full text (pdf)
    fulltext
  • 4.
    Dupont, Charlèss
    et al.
    VUB-UGhent End-of-life Care Research Group, Vrije Universiteit Brussel (VUB), 1090, Brussel, Belgium.
    Smets, Tinne
    VUB-UGhent End-of-life Care Research Group, Vrije Universiteit Brussel (VUB), 1090, Brussel, Belgium.
    Monnet, Fanny
    VUB-UGhent End-of-life Care Research Group, Vrije Universiteit Brussel (VUB), 1090, Brussel, Belgium.
    Eneslätt, Malin
    Luleå University of Technology, Department of Health, Learning and Technology, Nursing and Medical Technology. Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden; Department of Health Care Sciences, Marie Cederschiöld University College, Stockholm, Sweden.
    Tishelman, Carol
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden; Center for health care economics, informatics and health care research (CHIS). Stockholm Health Care Services (SLSO), Region Stockholm, Stockholm, Sweden.
    Van den Block, Lieve
    VUB-UGhent End-of-life Care Research Group, Vrije Universiteit Brussel (VUB), 1090, Brussel, Belgium.
    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 preferences2022In: BMC Public Health, E-ISSN 1471-2458, Vol. 22, no 1, article id 2110Article in journal (Refereed)
    Abstract [en]

    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. 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.

    Results

    We 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.

    Conclusion

    By 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.

    Download full text (pdf)
    fulltext
  • 5.
    Dupont, Charlèss
    et al.
    VUB-UGhent End-of-life Care Research Group, Vrije Universiteit Brussel (VUB), Brussel, Belgium.
    Smets, Tinne
    VUB-UGhent End-of-life Care Research Group, Vrije Universiteit Brussel (VUB), Brussel, Belgium.
    Monnet, Fanny
    VUB-UGhent End-of-life Care Research Group, Vrije Universiteit Brussel (VUB), Brussel, Belgium.
    Eneslätt, Malin
    Luleå University of Technology, Department of Health, Education and Technology, Nursing and Medical Technology. Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Tishelman, Carol
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden; Department of Health Care Sciences, Marie Cederschiöld University College, Stockholm, Sweden.
    Van den Block, Lieve
    VUB-UGhent End-of-life Care Research Group, Vrije Universiteit Brussel (VUB), Brussel, Belgium.
    The cultural adaptation of the GoWish cards for use in Flanders, Belgium: a game to identify and discuss end-of-life preferences2022In: 7th Public Health Palliative Care International Conference. Democratizing caring, dying and grieving: participation, action, understanding and evaluation, Sage Publications, 2022, article id 93Conference paper (Refereed)
    Abstract [en]

    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.

    Download full text (pdf)
    fulltext
  • 6.
    Eneslätt, Malin
    Luleå University of Technology, Department of Health, Learning and Technology, Nursing and Medical Technology.
    Encouraging early conversations about values and preferences for future end-of-life care2016Conference paper (Other academic)
  • 7.
    Eneslätt, Malin
    Luleå University of Technology, Department of Health, Education and Technology, Nursing and Medical Technology. Karolinska Institutet, Sverige.
    Implementing advance care planning in Swedish healthcare settings – a qualitative study of professionals’ experiences2023Conference paper (Other academic)
  • 8. Eneslätt, Malin
    Non-terminally ill people’s reasoning about preferences for future End-of-Life care in the Advance Care Planning-naïve Swedish context2018Conference paper (Refereed)
  • 9.
    Eneslätt, Malin
    et al.
    Luleå University of Technology, Department of Health, Education and Technology, Nursing and Medical Technology.
    Ayoub, Maria
    Högskolan Dalarna, Sverige.
    Udo, Camilla
    Högskolan Dalarna, Sverige.
    Kreicbergs, Ulrika
    Marie Cederschiöld högskola, Stockholm, Sverige.
    Lövgren, Malin
    Marie Cederschiöld högskola, Stockholm, Sverige.
    Stödprogrammet Family Talk Intervention: Mål och innehåll i samtal med familjer inom barncancervård2023Conference paper (Other academic)
  • 10.
    Eneslätt, Malin
    et al.
    Luleå University of Technology, Department of Health, Learning and Technology, Nursing and Medical Technology. Karolinska Institutet, Dept of Learning, Informatics, Management and Ethics, Stockholm, Sweden.
    Helgesson, G.
    Karolinska Institutet, Dept of Learning, Informatics, Management and Ethics, Stockholm, Sweden.
    Tishelman, C.
    Karolinska Institutet, Dept of Learning, Informatics, Management and Ethics, Stockholm, Sweden; SLSO, Stockholm Health Services, Stockholm, Sweden; University of Southampton, Southampton, United Kingdom.
    Dissemination, Use and Impact of a Community-based, Conversational Advance Care Planning Intervention: Ripple Effects of the Swedish DöBra cards2021In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 35, no 1_suppl, article id J-27Article in journal (Other academic)
    Abstract [en]

    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.

  • 11.
    Eneslätt, Malin
    et al.
    Luleå University of Technology, Department of Health, Education and Technology, Nursing and Medical Technology. Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden; Department of Health Care Sciences, Marie Cederschiöld University College, Stockholm, Sweden.
    Helgesson, Gert
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Tishelman, Carol
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden; Stockholm Health Care Services (SLSO), Stockholm county council (SLL), Stockholm, Sweden.
    Dissemination, Use and Impact of a Community-based Advance Care Planning Intervention: Ripple Effects of the Swedish DöBra cards2022In: 7th Public Health Palliative Care International Conference. Democratizing caring, dying and grieving: participation, action, understanding and evaluation, Sage Publications, 2022, article id 224Conference paper (Refereed)
    Abstract [en]

    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.

    Download full text (pdf)
    fulltext
  • 12.
    Eneslätt, Malin
    et al.
    Luleå University of Technology, Department of Health, Learning and Technology, Nursing and Medical Technology. Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, 171 77 Stockholm, Sweden.
    Helgesson, Gert
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Tishelman, Carol
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden; Stockholm Health Care Services (SLSO), Region Stockholm, Stockholm, Sweden; School of Health Sciences, University of Southampton, Southampton, UK.
    Dissemination, use, and impact of a community-based, conversational advance care planning intervention: ripple effects of the Swedish DöBra cards2021In: Palliative Care and Social Practice, ISSN 2632-3524, Vol. 15, article id 26323524211032983Article in journal (Refereed)
    Abstract [en]

    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.

    Download full text (pdf)
    fulltext
  • 13.
    Eneslätt, Malin
    et al.
    Luleå University of Technology, Department of Health Sciences, Nursing and Medical technology. Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Helgesson, Gert
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Tishelman, Carol
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden. Center for Rural Medicine (GMC), Storuman, Sweden. Stockholm Health Care Services (SLSO), Region Stockholm, Sweden. School of Health Sciences, University of Southampton, UK.
    Exploring Community-Dwelling Older Adults’ Considerations About Values and Preferences for Future End-of-Life Care: A Study from Sweden2020In: The Gerontologist, ISSN 0016-9013, E-ISSN 1758-5341, Vol. 60, no 7, p. 1332-1342Article in journal (Refereed)
    Abstract [en]

    Background and Objectives

    There is a substantial body of research on advance care planning (ACP), often originating from English-speaking countries and focused on health care settings. However, studies of content of ACP conversations in community settings remain scarce. We therefore explore community-dwelling, older adults’ reasoning about end-of-life (EoL) values and preferences in ACP conversations.

    Research Design and Methods

    In this participatory action research project, planned and conducted in collaboration with national community-based organizations, we interviewed 65 older adults without known EoL care needs, about their values and preferences for future EoL care. Conversations were stimulated by sorting and ranking statements in a Swedish version of GoWish cards, called the DöBra cards, and verbatim transcripts were analyzed inductively.

    Results

    While participants shared some common preferences about EoL care, there was great variation among individuals in how they reasoned. Although EoL preferences and prioritizations could be identical, different individuals explained these choices very differently. We exemplify this variation using data from four participants who discussed their respective EoL preferences by focusing on either physical, social, existential, or practical implications.

    Discussion and Implications

    A previously undocumented benefit of the GoWish/DöBra cards is how the flexibility of the card statements support substantial discussion of an individual’s EoL preferences and underlying values. Such in-depth descriptions of participants’ reasoning and considerations are important for understanding the very individual nature of prioritizing EoL preferences. We suggest future users of the DöBra/GoWish cards consider the underlying reasoning of individuals’ prioritizations to strengthen person-centeredness in EoL conversations and care provision.

  • 14.
    Eneslätt, Malin
    et al.
    Karolinska Institutet, Stockholm, Sweden.
    Helgesson, Gert
    Karolinska Institutet, Stockholm, Sweden.
    Tishelman, Carol
    Karolinska Institutet, Stockholm, Sweden.
    OP02 SweACP: a structured conversation-based advanced care planning approach in the ACP-naïve Swedish context.2019Conference paper (Refereed)
  • 15.
    Eneslätt, Malin
    et al.
    Luleå University of Technology, Department of Health, Learning and Technology, Nursing and Medical Technology.
    Helgesson, Gert
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, 171 77, Stockholm, Sweden.
    Tishelman, Carol
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, 171 77, Stockholm, Sweden; Stockholm Health Care Services (SLSO), Region Stockholm, Stockholm, Sweden; University of Southampton, School of Health Sciences, Southampton, UK.
    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 adults2021In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 20, article id 148Article in journal (Refereed)
    Abstract [en]

    Background

    End-of-life preferences may change over time, e.g. due to illness progression or life events. Research on stability of end-of-life preferences has largely focused on life-sustaining treatments in seriously ill patients or medical decision-making based on hypothetical illness scenarios and possible treatment options. Few studies focus on community-dwellers in natural settings. The aim of this study was thus to explore if and how community-dwelling, older adults’ prioritizations and reasoning about values and preferences for future end-of-life care change over time.

    Methods

    Using a mixed-methods design, we explored stability of end-of-life preferences in older community-dwelling adults without imminent end-of-life care needs. At two timepoints (T1 and T2), 5.5–12 months apart, 52 individuals discussed what would be important to them at the end-of-life, through open conversations and while using DöBra cards, a Swedish version of GoWish cards. Participants ranked their most important card statements from 1 to 10. Stability in card rankings, i.e. a card recurring in the top-10 ranking at T2 regardless of position, was explored using descriptive statistics and non-parametric analyses. Participants’ reasoning about card choices were explored with longitudinal qualitative analysis.

    Results

    Stability between T1 and T2 in the top-10 priorities ranged from 20 to 80%, median 60%. Stability in cards rankings could not be explained by changes in participants’ health status, extent of card use (no/little/frequent use) between interviews, or days between T1 and T2, nor was it related to demographic variables. Qualitative analysis showed that consistent reasoning was not always paired with consistency in card choices and changed card choices were not always related to changes in reasoning.

    Conclusions

    Longitudinal exploration combining DöBra card rankings with underlying reasoning about end-of-life preferences over time furthers knowledge on the dynamics between values and preferences in end-of-life decision-making. Individuals’ end-of-life preferences in form of card choices were relatively stable over time albeit with large variation between different individuals. However, the values and underlying reasoning that participants used to motivate their choices appeared more stable than ranking of card choices. We thus conclude that concurrent conversation-based exploration is a more comprehensive indicator of end-of-life values and preferences over time than ranking of cards alone.

  • 16.
    Eneslätt, Malin
    et al.
    Luleå University of Technology, Department of Health, Learning and Technology, Nursing and Medical Technology. Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Helgesson, Gert
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Tishelman, Carol
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Same, Same But Different? Changes in Community-Dwelling, Older Adults’ End-of-Life Preferences Over Time2021Conference paper (Refereed)
  • 17.
    Eneslätt, Malin
    et al.
    Luleå University of Technology, Department of Health, Education and Technology, Nursing and Medical Technology.
    Jobe, Ingela
    Luleå University of Technology, Department of Health, Education and Technology, Nursing and Medical Technology.
    Melander, Catharina
    Luleå University of Technology, Department of Health, Education and Technology, Nursing and Medical Technology.
    Using Innovative Means To Educate Nursing Students At A North Sweden University About End-Of-Life2023In: Abstractkatalog Norrskenskonferensen 2023, 2023, p. 56-Conference paper (Refereed)
  • 18.
    Eneslätt, Malin
    et al.
    Luleå University of Technology, Department of Health, Learning and Technology, Nursing and Medical Technology.
    Johansson, Therese
    Cicely Saunders Institute, King’s College London, United Kingdom; Karolinska Institutet and Stockholm Health Care Services, Sweden.
    Stoor, Krister
    Várdduo - Centre for Sámi Research, Dept. of Language Studies/Sámi dutkan, Umeå University, Sweden.
    Tishelman, Carol
    Karolinska Institutet, Stockholm, Sweden; Region Stockholm, Stockholm, Sweden; End-of-Life Research Group, Vrije University, Brussels, Belgium.
    The DöBra cards: A tool to support death literacy?2023In: Culture, Spirituality and Religious Literacy in Healthcare: Nordic Perspectives / [ed] Daniel Enstedt; Lisen Dellenborg, Taylor & Francis, 2023, p. 163-179Chapter in book (Refereed)
  • 19.
    Eneslätt, Malin
    et al.
    Luleå University of Technology, Department of Health, Education and Technology, Nursing and Medical Technology.
    Johansson, Therese
    Tishelman, Carol
    Lindqvist, Olav
    Hur vill jag ha det i livets slutskede? En genomförbarhetsstudie om att introducera Advance Care Planning i Sverige2018Conference paper (Other academic)
  • 20.
    Eneslätt, Malin
    et al.
    Luleå University of Technology, Department of Health, Education and Technology, Nursing and Medical Technology. Karolinska Institutet, Sverige.
    Kleijberg, Max
    Karolinska Institutet, Sverige.
    Presentation av abstrakt från DöBra-projektet: Att engagera allmänheten i frågor om döende, död och sorg2022In: Konferensbok: Palliativ vård - det gäller livet, Västra Götalandsregionen , 2022, p. 12-13Conference paper (Other academic)
  • 21.
    Eneslätt, Malin
    et al.
    Marie Cederschiöld University College, Stockholm, Sweden.
    Udo, C.
    University, Falun, Sweden.
    Ayoub, M.
    University, Falun, Sweden.
    Kreicbergs, U.
    Marie Cederschiöld University College, Stockholm, Sweden.
    Lövgren, M.
    Dalarna University, Falun, Sweden.
    The Family Talk Intervention – Supporting Families Affected by Childhood Cancer to Communicate about Strengths and Concerns2023Conference paper (Refereed)
  • 22.
    Goliath, Ida
    et al.
    Avdelningen för innovativ vård, Institituionen för Lärande, informatik, management och etik, Karolinska Institutet.
    Eneslätt, Malin
    Avdelningen för innovativ vård, Institituionen för Lärande, informatik, management och etik, Karolinska Institutet.
    Hur kan vi prata om döende och död - exempel från forskningsprogrammet DöBra 2018Conference paper (Other academic)
  • 23.
    Goliath, Ida
    et al.
    Avdelningen för innovativ vård, institutionen för lärande, informatik, management och etik, Karolinska Institutet, Sverige.
    Eneslätt, Malin
    Avdelningen för innovativ vård, Institutionen för lärande, informatik, management och etik, Karolinska Institutet, Sverige.
    Johansson, Therese
    Avdelningen för innovativ vård, Institutionen för lärande, informatik, management och etik, Karolinska Institutet, Sverige.
    DöBra - samtal om prioriteringar inför vård i livets slutskede2020Conference paper (Other academic)
  • 24.
    Henriksson, Malin
    et al.
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet.
    Helgesson, Gert
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet.
    Tishelman, Carol
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet.
    Exploring Swedish Community-dwelling, Older Adults’ Values and Preferences for Future End-of-Life Care2019Conference paper (Refereed)
  • 25.
    Henriksson, Malin
    et al.
    Karolinska Institutet, Dept. of Learning, Informatics, Management and Ethics.
    Tishelman, Carol
    Karolinska Institutet, Dept. of Learning, Informatics, Management and Ethics.
    Johansson, Therese
    Karolinska Institutet, Dept. of Learning, Informatics, Management and Ethics.
    Lindqvist, Olav
    Karolinska Institutet, Dept. of Learning, Informatics, Management and Ethics.
    Swe-ACP: A feasibility study using a translated and adapted version of GoWish cards in the ACP-naïve Swedish context2017Conference paper (Refereed)
  • 26.
    Henriksson, Malin
    et al.
    Medical Management Center, Dept. of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, Stockholm, Sweden.
    Tishelman, Carol
    Medical Management Center, Dept. of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, Stockholm, Sweden.
    Johansson, Therese
    Medical Management Center, Dept. of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, Stockholm, Sweden.
    Lindqvist, Olav
    Medical Management Center, Dept. of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, Stockholm, Sweden.
    Swe-ACP: Results of a feasibility study using a translated and adapted version of GoWish cards in the ACP-naïve Swedish context2017Conference paper (Refereed)
  • 27.
    Kroik, Lena
    et al.
    Department of Nursing, Umeå University, Umeå, Sweden; The Centre for Rural Medicine, Storuman, Sweden.
    Eneslätt, Malin
    Luleå University of Technology, Department of Health, Learning and Technology, Nursing and Medical Technology. LIME/Division of Innovative Care Research, Karolinska Institutet, Stockholm, Sweden.
    Tishelman, Carol
    LIME/Division of Innovative Care Research, Karolinska Institutet, Stockholm, Sweden; Stockholm Health Care Services, Stockholm, Sweden.
    Stoor, Krister
    Centre for Sámi Studies- Várdduo, Umeå University, Umeå, Sweden; Department of Language Studies, Umeå University, Umeå, Sweden.
    Edin‐Liljegren, Anette
    Department of Nursing Umeå University, Umeå, Sweden; The Centre for Rural Medicine, Storuman, Sweden; LIME/Division of Innovative Care Research, Karolinska Institutet, Stockholm, Sweden.
    Values and preferences for future end‐of‐life care among the indigenous Sámi2022In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 36, no 2, p. 504-514Article in journal (Refereed)
    Abstract [en]

    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 values and preferences, with potential to reflect life as a Sámi in Sweden.

    Download full text (pdf)
    fulltext
  • 28.
    Kroik, Lena
    et al.
    Glesbygdsmedicinskt centrum, Sweden.
    Tishelman, Carol
    Karolinska Institutet, Sweden.
    Eneslätt, Malin
    Luleå University of Technology, Department of Health, Education and Technology, Nursing and Medical Technology.
    Stoor, Krister
    Umeå University, Sweden.
    Liljegren-Edin, Anette
    Umeå University, Sweden.
    Values And Preferences For Future End-Of-Life Care Among The Indigenous Sámi2023In: Abstractkatalog Norrskenskonferensen 2023, Region Jämtland Härjedalen , 2023, p. 11-Conference paper (Refereed)
  • 29.
    Tishelman, Carol
    et al.
    Karolinska Institutet, Sverige.
    Eneslätt, Malin
    Luleå University of Technology, Department of Health, Education and Technology, Nursing and Medical Technology.
    Goliath, Ida
    Karolinska Institutet, Sverige.
    Kleijberg, Max
    Karolinska Institutet, Sverige.
    Knytkalas! Forskningsverkstad om deltagande aktionsforskning2022Conference paper (Other academic)
  • 30.
    Tishelman, Carol
    et al.
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden; Center for Rural Medicine (GMC), Storuman, Sweden; Stockholm Health Care Services (SLSO), Stockholm country council (SLL), Stockholm, Sweden; School of Health Sciences, University of Southampton, Southampton, UK.
    Eneslätt, Malin
    Luleå University of Technology, Department of Health Sciences, Nursing Care. Luleå University of Technology, Department of Health, Learning and Technology, Nursing and Medical Technology. Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Menkin, Elizabeth
    Institute for Palliative Medicine, San Diego Hospice, San Diego, California, USA.
    Lindqvist, Olav
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden; Department of Nursing, Umeå University, Umeå, Sweden.
    Developing and using a structured, conversation-based intervention for clarifying values and preferences for end-of-life in the advance care planning-naïve Swedish context: Action research within the DöBra research program2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 4, p. 803-815Article in journal (Refereed)
    Abstract [en]

    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 DöBra 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 DöBra card items. The DöBra cards were concluded to be a viable tool for stimulating person-centered conversations on preferences for future end-of-life care.

  • 31.
    Tishelman, Carol
    et al.
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm 171 77, Sweden.
    Eneslätt, Malin
    Luleå University of Technology, Department of Health Sciences, Nursing and Medical technology. Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden..
    Menkin, Elizabeth S.
    Institute for Palliative Medicine, San Diego Hospice, San Jose, California, USA..
    Van den Block, Lieve
    End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium. Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Brussels, Belgium..
    Tishelman et al’s Response to Morrison: Advance Directives/Care Planning: Clear, Simple, and Wrong (DOI: 10.1089/jpm.2020.0272)2021In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 24, no 1, p. 16-17Article in journal (Other academic)
  • 32.
    Tishelman, Carol
    et al.
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden; Stockholm Health Care Services (SLSO), Stockholms county council (SLL), Stockholm, Sweden.
    Noonan, Kerrie
    Western Sydney University and Death Literacy Institute, Australiaso.
    Kroik, Lena
    Centre for Rural Medicine, Storuman, Sweden.
    Eneslätt, Malin
    Luleå University of Technology, Department of Health, Education and Technology, Nursing and Medical Technology. Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden; Department of Health Care Sciences, Marie Cederschiöld University College, Stockholm, Sweden; Department of Health Care Sciences, Marie Cederschiöld University College, Stockholm, Sweden.
    Kleijberg, Max
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    `It takes a village’: Exploring potentials and limitations in applying the death system concept in public health palliative care2022In: 7th Public Health Palliative Care International Conference. Democratizing caring, dying and grieving: participation, action, understanding and evaluation, Sage Publications, 2022, article id 117Conference paper (Refereed)
    Abstract [en]

    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, and helping address levers for cultural and social change.

    Download full text (pdf)
    fulltext
1 - 32 of 32
CiteExportLink to result list
Permanent link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf