Final Report DöBra Research Program Forte #2014-04071

Sammanfattning (Svenska)

De övergripande målen med forskningsprogrammet DöBra har varit att minska undvikbart lidande i samband med döende, död och sorg och att undersöka innovativa sätt att integrera stringent forskning med hållbara förändringsprocesser. Med ett nytt folkhälsoperspektiv har vi arbetat proaktivt för att stärka samhällskompetens och ge individer, familjer och personal möjlighet att bättre hantera frågor kring livets slut, i linje med ”hälsofrämjande palliativ vård” (kallas nu ”public health palliative care” (PHPC)). Det internationella, tvärvetenskapliga programmet DöBra har i partnerskap med en bredd av samhällsintressenter genomfört aktionsforskning och olika samskapande processer. Vi har samlat akademiker, vårdtagare och -givare, och samhällsgrupper (t.ex. patient- och pensionärsföreningar) för att genom kunskapsutbyte utbyta idéer, erfarenheter och expertis. Dessa partnerskap har varit hållbara över tid, t.ex. referensgruppen i projektet Swe-ACP som träffades flera gånger/år från projektets uppstart 2012 t.o.m. 2022, med intresse av fortsatt samarbete om ytterligare medel erhålls.

Specifika mål strukturerades enligt Ottawa-stadgan för hälsopromotion och uppfylldes genom 5 projekt samt olika kunskapsutbytesaktiviteter. Vi har stärkt individuella och kollektiva färdigheter och förmågor, t.ex. genom att översätta och anpassa ett samtalsverktyg till svenska förhållanden. Verktyget DöBra-korten har sedan testats och spridits för stödja samtal om prioriteringar inför livets slut både inom och utanför vårdsystemet. Vi har bidragit till att skapa stödjande miljöer och initiativ på lokal samhällsnivå, exempelvis genom workshops där äldre personer och 9-åriga barn genom konstaktiviteter har engagerat sig i existentiella frågor, och projekt på äldreboenden; vi har främjat en hälsoinriktad samhällspolitik, genom samarbete med olika samhällsorganisationer, exempelvis PRO som nu tar upp livets slut i sin nationella folkhälsopolicy. Vi har bidragit till att omorientera mandat inom vård och omsorgsverksamheter genom att, bland annat, bidra i professionell grundutbildning och fortbildning, och bedriva forskning tillsammans med aktörer inom äldreomsorg. T.ex. har vårt samarbete med Äldreförvaltningen i Stockholms stad resulterat i att DöBra-korten nu finns på alla särskilda boenden i kommunen. Det bör noteras att två senare Ottawa-stadge-målen inte prioriterades i våra projekt.

Hittills har forskningsprogrammet DöBra resulterat i 35 internationella artiklar (fler är inskickade eller ska skickas till vetenskapliga tidskrifter), 4 doktorsavhandlingar, en pågående doktorsavhandling och artiklar i ytterligare en avhandling, samt 7 masteruppsatser och 1 kandidatuppsats. Dessutom har vi ytterligare >25 granskade publikationer, en mängd populärvetenskapliga artiklar och har skapat ett antal filmer, verktygslådor och andra produkter tillgängliga utan kostnad för allmänheten via www.dobra.se

DöBra-kortleken har dessutom gjorts tillgänglig för allmänheten via samarbete med Volante förlag, med >4000 sålda exemplar hittills och kontinuerligt ökande efterfrågan. Detta utan ekonomisk vinning för forskarna. Över 70 massmediereportage/podcasts har fokuserat på forskningsprogrammet, med ytterligare vetenskaplig spridning via >70 presentationer på konferenser och andra evenemang.

Sammanfattningsvis, anser vi att vi har uppfyllt programmets mål genom att: stärka allmän och professionell kunskap, påverka attityder och beteenden i relation till svår sjukdom, död och sorg; bidra med nya sätt att tänka om förbättringar av vård i livets slut; skapa gemenskap och kapacitet att stödja människor att ta mer informerade beslut relaterade till livets slut; förbättra kommunikationen i samhället i stort om döende och död. Vi har också rekryterat nya och kreativa kompetenser till vårt transdisciplinära team för att bredda sätt att bidra till förbättrad kvalitet i livets slut.

Summary (English)

The overarching aims of the DöBra research program were to diminish avoidable suffering related to dying, death and bereavement, and investigate innovative means of integrating stringent research with sustainable change processes. Using a “new public health” perspective, we worked proactively to build community competency and empower individuals, families, and staff in dealing with end-of-life (EoL) care issues. These approaches are in line with ideas from “health-promoting palliative care”, now known as “public health palliative care” (PHPC). The international, transdisciplinary program was based on extensive partnerships with various stakeholders using knowledge exchange, action research, and different co-creative processes, and brought together academic staff, care users and providers, wider groups and communities to exchange ideas, practices, evidence, and expertise. These partnerships were long-term, e.g. the community-based Swe-ACP reference group met several times/year from a planning phase in 2012 through 2022, with desire for continued contact if further funding is procured.

Specific goals were structured according to the Ottawa Charter for Health Promotion and fulfilled through a series of 5 projects and various knowledge exchange activities. We supported development of personal and collective skills, e.g., via translating, adapting for the Swedish context, testing, and publicly disseminating the advance care planning tool the DöBra cards. We created supportive environments and strengthened community action, e.g. through projects working with older people, their relatives and staff in residential care facilities, and in a series of workshops with older people and 9-year old children, using art activities to engage with existential issues. We helped build public policies to support health, e.g. by contributing to national policy documents, and by working with community organizations, such as PRO, who now address end-of-life (EoL) issues in their public health policy. We also helped reorient health services, e.g. by contributing to basic and continuing professional education; working closely with Stockholm City Elder Care Bureau; and conducting research in elder care facilities.  It should be noted that the last two Ottawa Charter Goals were not highly prioritized in our specific projects.

The DöBra Research Program has resulted in 35 international articles with several additional articles ongoing or submitted, 4 completed PhD theses, one ongoing PhD thesis, and portions in yet another thesis, as well as 7 masters and 1 undergraduate theses. In addition, we have >25 other reviewed publications, a variety of popular science articles, and films, toolboxes, and other products available to the public without cost via our website (www.dobra.se). The DöBra card deck has been made publicly available via collaboration with Volante publishing company. To date, >4000 copies have been sold and demand is continually increasing. The researchers have no economic gain from this. Over 70 mass media reports and podcasts have focused on the research program, with scientific dissemination also via >70 presentations at conferences and other events.

In summary, we believe we have fulfilled the program aim to support changes in public and professional knowledge, attitudes, and behaviors towards dying, death, and bereavement; contribute new ways of thinking for improving palliative and EoL care; help build community and professional capacity to support people and allow more informed care decisions related to EoL; improve communication among about death and dying. Through our extensive transdisciplinary team we have also recruited new and creative resource persons  to our research team, who became engaged in improving EoL care.

A. Publications

 

A.1. International peer-reviewed publications

(* derived from a master/magister thesis, ST-thesis or other non-doctoral student collaboration; note Ida Carlander changed her name to Ida Goliath; Malin Henriksson changed her name to Malin Eneslätt)

  1. De Vleminck A, Paul S, Reinius M, Sallnow L, Tishelman C, Cohen J. 2022 Engagement of specialized palliative care services with the general public: A population-level survey in three European countries. Palliative Medicine, Pages 026921632210795, DOI:10.1177/02692163221079546.
  2. Johansson T, Tishelman C, Eriksson LE, Cohen J, Goliath I. 2022. Use, usability, and impact of a tool to support conversations about end-of-life preferences in residential elder care – a qualitative study of staff experiences. BMC Geriatrics, 22, 274 (2022). https://doi.org/10.1186/s12877-022-02915-w
  3. Kleijberg M, Hilton R, Ahlberg BM, Tishelman C. 2022. Conceptualizing impact in community-based participatory action research to engage communities in end-of-life issues. Palliat Care Soc Pract. 2022 May 9;16:26323524221095107. doi: 10.1177/26323524221095107.
  4. Stranz, A; Tishelman, C, Westerlund, B; Nilsson, F; Hilton, R; Goliath, I. 2022. The call bell in residential care homes: experiences of residents and staff. J Aging Stud, 62 https://doi.org/10.1016/j.jaging.2022.101056
  5. Kroik L/Enelätt M (shared 1st authorship), Tishelman C, Stoor K, Edin-Liljegren A. 2022. Values and Preferences for Future End-of-Life Care among the Indigenous Sámi. Scandinavian Journal of Caring Sciences,36(2): 504-514 https://doi.org/10.1111/scs.13047 (online pub 2021)
  6. Tishelman C/Degen J (shared first authors), Weiss Goitianda S, Kleijberg M, Kleeberg-Niepage A.2022. A qualitative serial analysis of drawings by thirteen- to fifteen-year-old adolescents in Sweden about the first wave of the COVID-19 pandemic. Qualitative Health Research, Qual Health Res 2022 May 21;10497323221101978. doi: 10.1177/10497323221101978. Online ahead of print.
  7. Beck, S., Lundblad, L., Göras, C., and Eneslätt, M. 2022. Implementing advance care planning in Swedish healthcare settings – a qualitative study of professionals’ experiences. Scandinavian Journal of Primary Health Care. DOI: 10.1080/02813432.2022.2155456
  8. Tishelman C., Eneslätt M., Menkin, E., & Lindqvist O. 2022. 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 Program. Death Studies, 46(4), 803-815. doi:10.1080/07481187.2019.1701145 (first published on-line in  2019)
  9. Dupont C, Smets T, Monnet F, Eneslätt M, Tishelman C, Van den Block L. 2022.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. BMC Public Health. 22(1):2110. doi: 10.1186/s12889-022-14523-9.
  10. Pesut, B., Thorne, S., Huisken, A., Wright, DK, Chambaere, K., Tishelman, C., Ghosh, S. 2022. Is progress being made on Canada’s Palliative Care Framework and Action Plan? A survey of stakeholder perspectives. BMC Palliative Care 21:182. https://doi.org/10.1186/s12904-022-01074-4
  11. Tishelman C, Eneslätt M, Menkin E, Van der Block L. 2021. Stopping ACP research and practice: clear, simple, and wrong approach to a complex problem.  Response to the editorial by R. Sean Morrison” Journal of Palliative Medicine, 2021;24(1):16-17.
  12. Kroik L, Tishelman C, Stoor K, Edin-Liljegren A. 2021. A Salutogenic Perspective on End-of-Life Care among the Indigenous Sámi of Northern Fennoscandia. Healthcare 9, 766 https://doi.org/10.3390/healthcare9060766
  13. Tishelman C, Hultin-Rosenberg J, Hadders A, Eriksson LE. 2021. Fearing fear itself: Crowdsourced longitudinal data on Covid-19-related fear in Sweden. PLoS One, 16(7), e0253371. https://doi.org/10.1371/journal.pone.0253371
  14. Eneslätt M, Helgesson G, Tishelman C. 2021. Dissemination, Use and Impact of a Community-based, Conversational Advance Care Planning Intervention: Ripple Effects of the Swedish DöBra cards. Palliative Care and Social Practice, 15, 263235242110329. https://doi.org/10.1177/26323524211032983
  15. Eneslätt M, Helgesson G, Tishelman C. 2021. Same, same, but different? A longitudinal mixed-methods study of changes in values and preferences for future end-of-life care among community-dwelling, older adults. BMC Palliative Care 20(1). https://doi.org/10.1186/s12904-021-00839-7
  16. Kleijberg M, Hilton R, Ahlberg BM, Tishelman C. 2021. Identifying play elements used to engage with end-of-life issues in Swedish intergenerational arts initiatives. Healthcare 9, 764. https://doi.org/10.3390/healthcare9060764
  17. Johansson T, Tishelman C, Eriksson LE, Cohen J, Goliath I. 2021. Continuums of change in a series of workshops about end-of-life conversations among elder care staff in Sweden: a longitudinal qualitative study. Qualitative Health Research. https://doi.org/10.1177/10497323211012986
  18. Macarow K, Hilton, R, & Coombs, G. (2021). Hands across Care: Art and social practice in health and elder care contexts. Public Health, 195, 135-141.
  19. Macarow K. (2021). Choreography of Care. London Journal of Critical Thought, 4(1), 36-50.
  20. Kroik L, Stoor K, Edin-Liljegren A, Tishelman C. 2020. Using narrative analysis to explore traditional Sámi knowledge through story telling about end-of-life. Health & Place,Vol 65:102424- https://doi.org/10.1016/j.healthplace.2020.102424
  21. Kleijberg M, Ahlberg BM, Hilton R, Tishelman C. 2020. Death, loss and community—Perspectives from children, their parents and older adults on intergenerational community-based arts initiatives in Sweden. Health Soc Care Community.00:1–11. https://doi.org/10.1111/hsc.13014https://doi.org/10.1080/13576275.2020.1715359
  22. Kroik L, Lindqvist O, Stoor K, Tishelman C. 2020.The Past is Present: Death Systems among the Indigenous Sámi in Northern Scandinavia Today. Mortality: https://doi.org/10.1080/13576275.2020.1715359
  23. Eneslätt, M, Helgesson G, Tishelman C. 2020. Exploring Community-dwelling Older Adults’ Considerations about Values and Preferences for Future End-of-Life Care: A study from Sweden. [published online ahead of print, 2020 Mar 21]. Gerontologist. 2020;gnaa012. doi:10.1093/geront/gnaa012
  24. * Alvariza A, Mjörnberg M, Goliath I, 2020. Palliative care nurses’ strategies when working in private homes-A photo-elicitation study. Journal of clinical nursing 2020;29(1-2):139-151
  25. Pesut B, Thorne S, Schiller C, Grieg M, Roussel J, Tishelman C. 2020. Constructing Good Nursing Practice for Medical Assistance in Dying in Canada: An Interpretive Descriptive Study. Global Qualitative Nursing Research. Vol 7, https://doi/10.1177/2333393620938686
  26. Pesut B, Greig M, Thorne S, Storch J, Burgess M, Tishelman C, Chambaere M, Janke R. 2020. Nursing and euthanasia: A narrative review of the nursing ethics literature. Nursing Ethics. Vol. 27(1) 152–167. https://doi.org/10.1177/0969733019845127
  27. Kleijberg M, Ahlberg BM, Macdonald A, Lindqvist O, Tishelman C. 2019. Navigating power dynamics in engaging communities in end-of-life issues – Lessons learned from developing community-based intergenerational arts initiatives about death and loss, Death Studies, DOI: 10.1080/07481187.2019.1671547
  28. *Hajradinovic Y, Tishelman C, Lindqvist O. & Goliath, I. 2018. Family members´ experiences of the end-of-life care environments in acute care settings – a photo-elicitation study, International Journal of Qualitative Studies on Health and Well-being, 13:1,1511767
  29. Cleeve H, Tishelman C, Macdonald A, Lindqvist O, Goliath I. 2018. Not just things: The roles of objects at the end of life. Sociology of Health and Illness, 40 (4), 735. doi: 10.1111/1467-9566.1271
  30. Westerlund C & Tishelman C (shared 1st authorship), Benkel I, Fürst, CJ, Molander U, Rasmussen, BH, Sauter S, Lindqvist, O. 2018. Public Awareness of Palliative Care in Sweden. Scand J Public Health. Jun;46(4):478-487. doi: 10.1177/1403494817751329
  31. Tishelman C, Lindqvist O, Hajdarevic S, Rasmussen BH, Goliath I. 2016. Beyond the visual and verbal: Using participant-produced photographs in research on the surroundings for care at the end-of-life, Social Science & Medicine, 168; 120-129. doi: 10.1016/j.socscimed.2016.09.012.
  32. Sallnow L, Tishelman C, Lindqvist O, Richardson H, and Cohen J. 2016. Research in public health and end-of-life care—Building on the past and developing the new. Progress in Palliative Care. 24:1, 25-30. http://dx.doi.org/10.1080/09699260.2015.1101260
  33. Lindqvist O & Tishelman C. 2016. Going public: Reflections on developing the DöBra research program for health-promoting palliative care in Sweden.Progress in Palliative Care. 24:1, 19-24. http://dx.doi.org/10.1080/09699260.2015.1103497
  34. Lindqvist O & Tishelman C. 2015 Room for Death – International museum-visitors’ preferences regarding the end of their life. Social Science and Medicine, 139(Aug. 15):1-8. http://dx.doi.org/10.1016/j.socscimed.2015.06.016
  35. Lindqvist O, Threlkeld G, Street A, Tishelman C. 2015. Reflections on using biographical approaches in end-of-life care: dignity therapy as example. Qualitative Health Research, 25;1 40-50. DOI: 10.1177/1049732314549476.

 

A.2.Submitted for Publication

  • Johansson T, Olsson Å, Tishelman C, Eriksson LE, Noonan K, Leonard R, Goliath I, Cohen J (shared last authorship) Validation of a culturally adapted Swedish-language version of the Death Literacy Index. (Under revision in line with reviewer comments)
  • Johansson T, Tishelman C, Eriksson L, Cohen J, Goliath I. Factors influencing death literacy among Swedish adults: A cross-sectional exploratory study. (Under revision in line with reviewer comments)

A.3.Manuscripts in preparation for submission

  • Johansson T, Eriksson, LE, Tishelman C, Olsson Å, Sjöström-Bujacz  A, KowalskiL, Noonan K, Leonard R, Vanderstichelen S, Groot CM, Nierop-van Baalen C.A, Goliath I, Cohen J. Cultural and contextual influences on death literacy – a cross-national assessment of measurement invariance of the Death Literacy Index.
  • Eneslätt M/Kleijberg M (joint first authors), Eriksson LE, Goliath I, Johansson T, Kroik L, Olsson Å, Savage S, & Tishelman C. Reconsidering death systems: Reflections on applicability in a Swedish program of public health palliative care research
  • Efremius S, Eriksson LE, & Kleijberg M. Peer advisors creating dialogues in segregated communities towards equity in cancer prevention and early detection in Sweden

A.4.Published Abstracts (incomplete)

  • Johansson T, Vanderstichelen S, Tishelman C, Noonan K, Leonard R, Olsson Å, Eriksson LE, Goliath I, & Cohen J. 2022. Participatory workshop on the Death Literacy Index: Examination and reflection about its cross-cultural relevance and viability. 7th Public Health Palliative Care International Conference. Palliative Care and Social Practice, 16, 1-119. https://doi.org/10.1177/26323524221119941 
  • Eneslätt M, Helgesson G, Tishelman C. 2022. Abstract 223. Dissemination, Use and Impact of a Community-based Advance Care Planning Intervention: Ripple Effects of the Swedish DöBra cards. Palliative Care & Social Practice, Vol 16, p 87. DOI: 10.1177/26323524221119941
  • Vanderstichelen S, McIlfatrick S, Tishelman C, Deliens L, Cohen J, on behalf of the EAPC Reference Group on Public Health Palliative care. 2022. Abstract 265. Workshop. Looking forward: a workshop exploring the priorities for public health palliative care research in the coming decade. Palliative Care & Social Practice, Vol 16, p 102. DOI: 10.1177/26323524221119941
  • Johansson T, Tishelman C, Cohen J, Eriksson LE, Goliath I. 2022. Factors influencing death literacy in a Swedish sample. 7th Public Health Palliative Care International Conference. Palliative Care and Social Practice, 16, 1-119. https://doi.org/10.1177/26323524221119941
  • Kleijberg M, Hilton R, Maina Ahlberg B, Tishelman C. 2022. Abstract 65. Investigating impact development in Studio DöBra, a community-based participatory action research project to strengthen community engagement with end-of-life issues. Palliative Care & Social Practice, Vol 16, p 23. DOI: 10.1177/26323524221119941
  • Dupont C, Smets T, Monnet F, Eneslätt M, Tishelman C, Van den Block L. 2022. Abstract 92. The cultural adaptation of the GoWish cards for use in Flanders Belgium: a game to identify and discuss end-of-life preferences. Palliative Care & Social Practice, Vol 16, p 34. DOI: 10.1177/26323524221119941
  • Tishelman C, Noonan K., Kroik L, Eneslätt M, Kleijberg M and the DöBra Program. 2022. Abstract 115 Workshop. ’It takes a village’: Exploring potentials and limitations in applying the death system concept in public health palliative care. Palliative Care & Social Practice, Vol 16, p 42. DOI: 10.1177/26323524221119941
  • Johansson T, Tishelman C, Cohen J, Eriksson LE, & Goliath I. 2021. Abstract 18. Exploring Change in a Series of Workshops About End-of-Life Conversations Among Elder Care Staff in Sweden. Palliative Care & Social Practice, 15:pp 12. DOI: 10.1177/ 26323524211003703
  • Johansson T, Tishelman C, Cohen J, Eriksson LE, Goliath I. 2021. Impact of Using of a Tool to Stimulate Reflection about End-of-Life Communication in a Competence-building Initiative in Swedish Elder Care. Abstracts from the 17th World Congress of the EAPC 2021. Palliative Medicine, 35(1_suppl), 1-243. doi:10.1177/02692163211035909
  • Kleijberg M, Ahlberg BM, Hilton R, Tishelman C. 2021. Abstract 30. Reflections from Children and Older Adults Participating in Community-Based Arts Initiatives. Palliative Care & Social Practice, 15:pp 20. DOI: 10.1177/ 26323524211003703
  • Kleijberg M, Hilton R, Ahlberg BM, & Tishelman C. 2021. Abstract 31. Using Elements of Play in Arts Activities to Engage Communities with End-of-Life Issues. Palliative Care & Social Practice, 15:pp 21. DOI: 10.1177/ 26323524211003703
  • Eneslätt M, Helgesson G, & Tishelman C. 2021. Abstract 35. Same, Same But Different? Changes in Community-Dwelling, Older Adults’ End-of-Life Preferences over Time. Palliative Care & Social Practice, 15:pp 23. DOI: 10.1177/ 26323524211003703
  • Johansson T, Tishelman C, Eriksson LE, Cohen J, Goliath I. 2021. Exploring change in a series of workshops about end-of-life conversations among elder care staff in Sweden. Public Health Research in Palliative Care: Towards Solutions for Global Challenges, Palliative Care and Social Practice, 15, 1-33. DOI:10.1177/26323524211003703
  • Tishelman C, Goliath I, Henriksson Eneslätt M, Hilton R, Johansson T, & Kleijberg M. for the DöBra Research Program. 2020. Knowledge exchange, Sustainability and Innovation: examples from the DöBra Research Program. Special Issue Supplement: Conference Abstracts from the 6th Public Health Palliative Care International Conference, Progress in Palliative Care, 28(2), 123-188, DOI:10.1080/09699260.2020.1724630 
  • De Vleminck A, Tishelman C, Lindberg Reinius M, Sallnow L, Paul S, Cohen J. 2020. International perspectives on specialised palliative care services’ engagement with the community: Questioning our assumptions, Progress in Palliative Care 28(2), p 132. doi/pdf/10.1080/09699260.2020.1724630
  • Kroik L, Lindqvist O, Stoor K, Tishelman C. 2020.The past is present: Death systems among the indigenous Sámi in Scandinavia. Progress in Palliative Care, 28(2), pp 172-2.  doi/pdf/10.1080/09699260.2020.1724630
  • Tishelman C. 2018. Lessons we are learning: using participatory action research to integrate palliative care, health promotion and public health through the DöBra research program in Sweden. Annals of Palliative Medicine, Jan 7: Suppl 1, AB003. doi: 10.21037/apm.2018.s003.
  • Tishelman C, Lindqvist O. 2016. Going Public: Integrating Palliative Care, Health Promotion and Public Health in Sweden through the DoBra Research Program. Journal of Pain & Symptom Management. 52(6), Page e19.
  • Kjellgren H, Tishelman C, Macdonald, A, Lindqvist O, Goliath I. 2016. Exploring Objects at the End of Life. Journal of Pain & Symptom Management. 52(6), Page e37.
  • Kjellgren H, Kleijberg M, Carlander I, Lindqvist O, Tishelman C. 2015. Reflections from the intersection of palliative care and design. BMJ Support Palliat Care. Apr;5 Suppl 1:A29. doi: 10.1136/bmjspcare-2015-000906.93.
  • Lindqvist O, Tishelman C. 2015. Room for death – international museum – visitors’ preferences regarding the end of their life. BMJ Support Palliat Care. Apr;5 Suppl 1:A1. doi: 10.1136/bmjspcare-2015-000906.3.
  • Cohen J, Sallnow L, Tishelman C. 2015. Refining and sharing our methods—how to research the public health approach to palliative care? BMJ Support Palliat Care. Apr;5 Suppl 1:A2-3. doi: 10.1136/bmjspcare-2015-000906.7.
  • Tishelman C, Carlander I, Hajdarevic S, Rasmussen BH, Lindqvist O. 2014. Beyond the Verbal: Photo-elicitation Interviewing about the Surroundings for End-of-Life Care. Journal of Palliative Care, 30(3):220.
  • Tishelman C, Carlander I, Hajdarevic S, Rasmussen BH, Lindqvist O. 2014. Beyond the Verbal: Photo-elicitation Interviewing about the Surroundings for End-of-Life Care. Palliative Medicine 28(6): 729.

A.5. PhD Theses in progress and completed

  • Olsson, Å. PhD thesis In progress, planned for 2025. Working title: Implementation of proactive end-of-life conversations in nursing homes, Karolinska Institutet. Halftime seminar completed in March 2023
  • Johansson, T. 2022. A ‘new public health’ perspective on building competence for end-of-life care and communication: How death literacy can be developed and measured. PhD thesis. Karolinska Institutet.
  • Kleijberg, M. 2021. Studio DöBra—Creating spaces for engaging with end-of-life issues and interacting across generations through community-based arts activities. PhD thesis. Karolinska Institutet
  • Kroik, L. 2021. Samer och livets slut—Kunskap om traditioner för att utveckla framtidens vård. PhD thesis. Umeå University
  • Eneslätt, M. 2021. DöSnack. Metoder och verktyg för samtal om döende, död och framtida vård i livets slutskede. PhD thesis. Karolinska Institutet.
  • Kjellgren Cleeve, H. 2020. Mundane mattering : how materialities come to matter in everyday life in dementia care units and in end of life care”. PhD thesis, Karolinska Institutet (2 articles derive from DöBra Research Program)

B. Other publications (incomplete)

B.1. Reviewed Publications

  • Goliath I & Tishelman C. 2018 Döden berör oss alla-folkhälsoperspektiv på döende och död.  Palliativ vård, 2018(4): 8-9.
  • Eneslätt M, Johansson T, Stoor K and Tishelman, C. In press. The DöBra cards – a tool to support death literacy? Book Chapter In: Dellenborg, Lisen & Enstedt, Daniel (eds.) Culture, Spirituality and Religious Literacy in Healthcare. London: Routledge   

B.2. Popular Science publications

  • Ray Now, Patricia Solesi, Anders Danielsson, Lusine Danielyan, Daniel Mårs, Madeleine Lindqvist, Laura Tsarouha, Hirity Habtemicale, Therese Johansson, Ida Goliath. 2022. Samtal om livets slutskede: Hjälp till dig som arbetar på särskilt boende för äldre, och kommer hålla förberedande samtal (Conversations on the end-of-life. Help for you who works in residential elder care and will carry out advance care conversations). Published and distributed in collaboration with Stockholms city elder care agency (co-developed with project group and DöBra researchers Johansson and Goliath).
  • Kleijberg M. 2021DöBra Ateljé, Palliativ Vård
  • Kleijberg M. 2021DöBra Ateljé SPN nyhetsbrev
  • Tishelman C. 2019 Podcast Prata om Döden?, Karolinska Institutet https://ki.se/forskning/medicinvetarna-16-prata-om-doden
  • Kleijberg M. 2019 Sorg, död & andra livsviktiga saker. Äldre i Centrum, 1.
  • Forsberg A, Goliath I & Tishelman C. 2018. Döden, en del av livet, då som nu. Program Malmö Opera, La Traviata, 2 pp
  • Kroik L, Daerga L. 2018. Samisk hälsa på agendan! Tidskrift för svensk förening för allmänmedicin, AllmänMedicin
  • Henriksson M. 2018. DöBra-kortleken – ett verktyg för att samtala om döende och död. Palliativ vård, 4, 19.
  • Kleijberg M. 2018. ”Död, sorg, liv – och andra viktiga saker”. Palliativ vård, 4.
  • Henriksson M. 2016. Hur skulle du vilja ha det i livets slutskede? – en rapport från forskningsprojektet Swe-ACP. Demensforum, 3, 12.
  • Kroik L. 2016. Samer och vård i livets slutskede – kunskap om traditioner för att utveckla framtidens vård, Nordisk tidskrift för palliativ medisin, Omsorg, Nr 3 2016

C. Other Products

  • Films 2022 (spin-off product): “Finding your way into the conversation”, short (ca 5 minute) and long (ca 11 minute) versions are completed. These documentary films are aimed for health/social care staff, managers, older people and relatives to artistically and emotionally convey how the DöBra cards can be used to support conversations about future end-of-life care in Elder Care Facilities, with the aim of triggering reflection and discussion. Created in collaboration with KI, Foundation Stockholm Gerontology Research Center, by Goliath (DöBra), Partby (documentary filmmaker) and Wik (knowledge developer). Will be available online February 2023.
  • December 2021: Research-based tool Ray Now, Patricia Solesi, Anders Danielsson, Lusine Danielyan, Daniel Mårs, Madeleine Lindqvist, Laura Tsarouha, Hirity Habtemicale, Therese Johansson, Ida Goliath. 2022. Samtal om livets slutskede: Hjälp till dig som arbetar på särskilt boende för äldre, och kommer hålla förberedande samtal (Conversations on the end-of-life. Help for you who works in residential elder care and will carry out advance care conversations). Guidance published and distributed in collaboration with Stockholm city elder care agency (co-developed with project group and DöBra researchers Johansson and Goliath). This guide was initially distributed to 141 facilities for residential elder care in Stockholm city along with the DöBra card deck, to support staff in carrying out end-of-life conversations. It continues to be spread.
  • 2019 Goliath was one of the researchers “used as a case” to develop ways for innovation centres to make better use of and disseminate social innovation and research findings.  Nyttiggörande ur en forskares perspektiv- Ida Goliath – KI PLAY
  • 2019 Studio DöBra Toolox: Based on research findings from the Studio DöBra project, researcher Kleijberg and community partners developed Studio DöBra Toolbox to disseminate findings, anchor lessons learned at managerial levels in the various organizations that participated in the project, and inspire to develop and facilitate initiatives similar to Studio DöBra. The Toolboxes are available on the DöBra, free of cost and in both Swedish and English. The toolboxes have been used in several workshops and spin off projects.
  • DöBra Cards 2018: Due to demand from general public and health/social care professionals, the research-based DöBra cards have been made available through collaboration with Volante publishing company, with no profit or economic interest for the DöBra research program or individual researchers. As of Jan 2023, ca 3500 card decks have been sold, with a continuing increase in sales.
  • Film 2018: Artistic rendition of meeting between residents, staff, family, researchers and artists at a ‘Hand Festival’ arranged at Mälarbackens elder care facility in Stockholm, to highlight the salient role of touch in communication and giving/receiving care: https://vimeo.com/455425563
  • 2017: Three ca. 6 minute-long films were created using photographs depicting care environments taken by people who were nearing the end of their life, elderly people, relatives, and staff and their stories about what was important to them in their settings (see articles #. The films are available to the public free of charge via www.dobra.se, and have been used in our research, education and staff meetings to stimulate conversations about what can be supportive and improved in an end-of-life settings.

D. Media/Podcasts related to DöBra research program

  1. Kortlek leder till samtal om döden på äldreboende – Dagens Medicin Artikel om Åsa Olssons doktorandprojekt där DöBra-kortleken används inom äldreomsorg. Dagens Medicin, 2023-01-16
  2. Tackla stress och tidsbrist när disputationen närmar sig, I Universitetsläraren 10 nov 2022 https://universitetslararen.se/2022/11/10/tackla-stress-och-tidsbrist-nar-disputationen-narmar-sig/?hilite=kroik
  3. Vi dansade till midnatt och där tog askungesagan slut Intervju med Lena Kroik i Västerbottenskuriren, 2022-05-20
  4. Spelar kort om döden Artikel i Forte Magasin, 2022-05-10
  5. Jenny-Ann är dödsdoula: ”Vi måste våga äga döden” Inslag med bl.a. Carol Tishelman i Studio Ett, SR P1, 2022-05-03
  6. Näravårdpodden träffar Carol Tishelman, Max Kleijberg och Malin Eneslätt Podd-avsnitt, 2022-02-05
  7. Carol Tishelman och DöBra-projektet, finansierat av Forte, vinner KI:s kulturpris Fortes sociala medier, 2021-12-14
  8. Kortleken får igång dösnacket Artikel om DöBra-kortleken och Malin Eneslätts doktorsavhandling i Vårdfokus, 2021-12-14
  9. Ny avhandling om samer och livets slutskede Artikel i tidskriften Fjärde världen, 2021-12-13
  10. Har forskat om samer i livets slut Artikel om Lena Kroiks doktorsavhandling i Omvårdnadsmagasinet, 2021-12-10
  11. Äldrepengar i Fortes hbtq+ utlysning Äldre i Centrum uppmärksammar Max Kleijbergs forskningsanslag, 2021-11-30
  12. Hädanfärden begrundad Artikel som omnämner flera DöBra-projekt, av professor emeritus Gerdt Sundström i tidskriften Äldre i Centrum, 2021-11-30
  13. Lena Kroik gästar Omvårdnadspodden i ett avsnitt om kulturell kompetens, 2021-11-18
  14. KI:s kulturpris 2021 tilldelas Carol Tishelman och DöBra-projektet Artikel på KI:s hemsida, 2021-11-10
  15. Äldre i Centrum-podden diskuterar Lena Kroiks avhandling, 2021-10-22
  16. Ny avhandling om samer och livets slut Artikel på minoritet.se, 2021-09-28
  17. Porträtt: Fördjupande om samers önskemål vid livets slutskede Artikel om Lena Kroiks doktorsavhandling i Äldre i centrum , 2021-09-10
  18. Avhandling: DöBra Ateljé Artikel om Max Kleijbergs doktorsavhandling i Svenskt Palliativt Nätverks nyhetsbrev, september 2021.
  19. Vårdplanering inför livets slutskede Artikel om Malin Eneslätts doktorsavhandling i Äldre i centrum 2021-08-11
  20. Dödskonstigt generationsöverskridande Artikel om Max Kleijbergs doktorsavhandling i Äldre i centrum 2021-06-24
  21. ”Prata om döden i god tid” Intervju med Malin Eneslätt i Omvårdnadsmagasinet, nr 3, 2021.
  22. Samhörighet viktig för samer vid livets slut. Artikel om Lena Kroiks doktoravhandling på Forskning.se/Artikel från Umeå universitet.
  23. Doktorerade i vård av samer i livets slutskede (kräver prenumeration) Artikel om Lena Kroiks doktoravhandling i Västerbottens folkblad 2021-06-08
  24. Fördjupande om samers önskemål vid livets slut. Artikel om Lena Kroiks doktoravhandling från Äldre i centrum 2021-05-31.
  25. Vården i livets slutskede ska bli bättre, VK Familjeredaktionen 2020-05-29
  26. Önskan om att få vara same till livets slut 2021-05-28 Sameradion https://sverigesradio.se/artikel/onskan-om-att-fa-vara-same-till-livets-slut
  27. Disputation! Artikel om Malin Eneslätts disputation och doktorsavhandling i Svenskt Palliativt Nätverks nyhetsbrev, april 2021.
  28. Livets slutspel. Intervju med Therese Johansson i tidskriften Äldre i centrum, nr 1, 2021.
  29. Lena Kroik får samiska minnesfondens stipendium. Sveriges radio, 2020-05-13.
  30. Vår kultur erkänner inte döden. TT-artikel med Carol Tishelman, mars 2020. Artikeln har publicerats i: Säffle-Tidningen, Arvika Nyheter, Värmlands Folkblad, Karlskoga Tidning, Skaraborgs Allehanda, Provinstidningen Dalsland, Mariestads-Tidningen, Skaraborgsbygden, Norrländska Socialdemokraten, Helsingborgs Dagblad, Nya Wermlands-Tidningen, PRO Pensionärenas Riksorganisation.
  31. Se livet i dödens närhet. Spaning av Camilla Lif i Spanarna i P1, Sveriges radio. 2020-03-27
  32. ”Do we have to tell you everything?” Max Kleijberg, in EAPC reference group Public Health & Palliative care Issue #1 march 2020
  33. Triss i damer – och en lek med formuleringar (att prata om) Artikel i PROLIVNYTT: Informationsbladet från prostatacancerföreningen ProLiv Väst, nummer 98, December 2019
  34. Fokus på samiska hälsofrågor. Artikel på SVT Sapmis hemsida, 2019-11-26
  35. Kan man förbereda sig för döden? Inslag i Studio Ett i P1, 2019-10-04
  36. Unik studiecirkel i Västervik – här lär sig deltagarna att dö. Inslag i SVT Småland, 2019-09-18
  37. Eftermiddag i P4 Norrbotten, intervju med Malin Henriksson (börjar ca 9 min in i sändningen), 2019-06-07
  38. Medicinvetarna #16, Karolinska Institutets podcast med Carol Tishelman, publicerad maj 2019.
  39. ”Sorg, död & och andra livsviktiga saker”, av Max Kleijberg, Äldre i Centrum nr 1 2019
  40. Döcirkel om den egna döden, TV4 Nyheter 2019-03-03
  41. Lena Kroik, Medverkan i Sjuksköterskesnack, en podd om sjuksköterskors arbete, 2018-07-04
  42. ”Död, sorg, liv – och andra viktiga saker”, av Max Kleijberg, Palliativ Vård nr 4 2018
  43. Döden berör oss alla – folkhälsoperspektiv på döende och död, av Ida Goliath och Carol Tishelman, Palliativ Vård nr 4 2018
  44. DöBra Kortleken i undervisning av specialistsjuksköterskor och inom ASIH, Palliativ Vård nr 4 2018
  45. Döbra Kortleken – ett verktyg för att samtala om döende och död, av Malin Henriksson, Palliativ Vård nr 4 2018
  46. Alla pratade om hur man skulle dö, ingen pratade om hur man skulle leva,  s. 2-3, intervju med Carol Tishelman, Palliativ Vård nr 4 2018
  47. Viktigt med samisk vård vid livets slut, Sameradion Sveriges Radio, 2018-07-20
  48. DöBra – a program changing the way we think about death, blogg www.deatheducationlund.com, 2018-06-12
  49. Om döden och DöBra Kortleken, Nordegren & Epstein Sveriges Radio P1, 2018-05-30
  50. Kortleken som kan hjälpa oss att dö bättre, Sydsvenska Dagbladet, 2018-05-09
  51. Spela kort inför döden, Modern psykologi, juni 2018
  52. Med hälsan i behåll, PRO Studiematerial, lanserat 2018-04-03
  53. Forskningsprojekt ska fånga upp tankar om vård- och omsorgsmiljöer, Stockholms stad, 2018-03-23 (länk ej tillgänglig)
  54. Lättare prata om döden, SVT Rapport, 2018-03-19
  55. Var femte person dör hemma, SVT (Hem & Hyra), 2018-03-08
  56. Kortlek ska främja samtal om livets slut, Läkartidningen, 2018-02-22
  57. Föreläsning Lena Kroik, Staareveckan 2018, 2018-02-07
  58. När kallkällan sinar, Sydsamiskt Kyrkoblad – Daerpies Dierie, nr 3 2017, s.17
  59. Bingo gör döden mindre dramatisk, Mitt i Söderort, 2016-11-30
  60. I huvudet på en forskare, Cancervården nr 3, 2016
  61. Hur skulle du vilja ha det i livets slutskede, Demensforum nr 3, 2016
  62. We need to discuss end-of-life, From cell to society, KI, 2015
  63. Carol Tishelman – vård i livets slutskede, KI, 2015-11-12
  64. Prata om döden!, Livet & Döden, Danderyds församlings tidskrift Livet nr. 3, 2015
  65. Forskare med döden på agendan, Dagens Industri, 2015-07-09
  66. Gör livets sista dagar lättare, Forte Magasin, nr. 3, 2015
  67. Doktorand och renägare från Borgafjäll, Omvårdnadsmagasinet nr. 2, s. 6-9, 2015
  68. Carol Tishelman vill att vi pratar om döden, DöBra forskarporträtt, 2015-03-15
  69. 2015 Goliath: Participation in the Swedish radio programme Dödens vardag Tendens Sveriges radio P1, a documentary about the care of people at the end-of-life and in death. http://sverigesradio.se/sida/avsnitt/517416?programid=3381
  70. DöBra Café lockade många besökare, Stockholms Sjukhem, 2014-10-30 (länk ej tillgänglig)

E. Formal Presentations and Knowledge Exchange

E.1. Arranged by Research Program DöBra

  • 2019. Macarow K, Hilton R. This experimental and participatory event, held at RMIT in Melbourne Australia, explored the boundaries of the body at the end-of-life through roving conversations about end-of-life scenarios and how the intersect with culture, the senses and place https://art.rmit.edu.au/events/boundaries-of-the-body
  • 2018 Dec10: Tishelman Organized and hosted two seminars with Zayna Khayat—one of Canada’s top health innovators, ”The future of health (care), the home-spital, and aging” and ”Lessons learned in driving health system innovation”, at Karolinska Institutet, in collaboration wtih INNOVA, SFO-V, the Innovation Center at Karolinska University Hospital and KI Innovations AB.
  • 2018 November: arranged on invitation: DöBra Room and Break-out session, Swedish Professional Organizations for RN’s annual conference
  • 2017 DöBra team with community-collaborators Arranged a DöBra-day (DöBra-dagen- en döbra dag för oss vanliga dödliga) for the general public at the Nordic Museum, Stockholm.
  • 2016. DöBra team arranged the first DöBra Day Huss seminar, at Stockholms sjukhem, with presentations about the Research Program DöBra, and guest speaker Heather Richardsson, then CEO St Christopher’s Hospice, about the future of palliative and hospice care.
  • 2016 DöBra café in World café format at Stockholms sjukhem, for the general public
  • 2016 Invited to hold a DöBra café Tishelman, Eneslätt, Lindqvist at the Storytelling Festival (Berättarfestivalen) in Skellefteå Sweden, open to general public
  • 2015 Invited to hold a DöBra café Tishelman, Eneslätt at European Festival of the Night in Korpilombolo Sweden, open to the general public
  • 2014. Tishelman and Lindqvist Master’s Class in Public Health Approaches in Palliative Care: Investigating their impact, at St Joseph’s Hospice London, jointly arranged by Help the Hospices UK, Karolinska Institutet and St. Joseph’s Hospice, Presentation: “Reflections from the start: Researching health-promoting Palliative care in Sweden

E.2. Invited speaker/moderator at International and National Conferences

  1.     2022 Oct. 20-21, Mountbatten Conference 2022, The true value of hospices – Celebrating the impact of kindness and community. Presentation title: Arts activities to facilitate intergenerational conversations about the end-of-life. Presenter: Kleijberg, M.
  2. 2022:  Eneslätt, Tishelman, Kleijberg, Noonan. Workshop vid 7th Public Health Palliative Care Int’l Conference, Brugge, Belgium. “‘It takes a village’: Exploring potentials and limitations in applying the death system concept in public health palliative care initiatives”
  3. 2022. Tishelman, Invited final speaker to summarize conference 7th Public Health Palliative Care Int’l Conference, Brugge, Belgium
  4. 2022. Tishelman Invited panel member in Plenary session Research and Evaluation of Compassionate Communities, at the 7th Public Health Palliative Care International Conference
  5. 2022: Eneslätt, Goliath, Kleijberg, Olsson, Tishelman Invited workshop at pre-conference to 7th Swedish National Conference on Palliative Care. Göteborg. ”Knytkalas! Forskningsverkstad om deltagande aktionsforskning”
  6. 6-7 September 2022: DöBra team, Tishelman, Eneslätt, Kleijberg Invited to hold “DöBra” research program-based workshop activities during all pauses and lunches at the 7th Swedish Nation,al conference on Palliative Care, Göteborg
  7. Sept 2022: Tishelman final plenary speaker at 7th Swedish National Conference on Palliative Care, Göteborg, ””It takes a village” – Är ett folkhälsoperspektiv på livets slut något för oss i Sverige?” (’It takes a village—Is a public health perspective on the end-of-life of interest for us in Sweden?”
  8. 5 September 2022: Tishelman Invited speaker at Research pre-conference to Swedish National Conference on Palliative Care, Göteborg, with lecture ”It takes a village”: Deltagande Aktionsforskning – en möjlighet för palliativvårdsforskning? (“’It takes a village’: Participatory action research—an option for palliative care research?”)
  9. 2021 Oct. 14-15, Mountbatten Conference 2021, Dying in the 21st century… Is our health and social care system fit for purpose? Presentation title: Engaging children and older adults in end-of-life issues through arts activities, findings from Sweden. Presenter: Kleijberg, M.
  10. 2021 The future road map for researchers within ageing and health, Panel discussion with Martin Hyde (Swansea University, UK), Lena Dahlberg (Dalarna University & Karolinska Institutet), Ida Goliath (Karolinska Institutet), Ingmar Skoog (University of Gothenburg) Moderators: Barbro Westerholm, member of parliament & Mascha Pauelsen, Luleå University of Technology. SWEAH online Milestone Conference. October 19-20, 2021
  11. 2020 Nov. 17-18, European Association for Palliative Care, Public Health Research in Palliative Care “Towards Solutions for Global Challenges” Online Research Seminar, invited panellist. Panel title: Health promotion and palliative care. Panel: McIlfatrick, S., Paul, S., Kleijberg, M, Kellehear, A., Scherrens, AL.
  12. 2020: Eneslätt, Goliath, Johansson. 6e Nationella konferensen i Palliativ vård, Östersund. ”DöBra – samtal om prioriteringar inför vård i livets slutskede”
  13. 2020. Goliath, 6e Nationella konferensen i Palliativ vård, Östersund Hur skapar vi goda vårdmiljöer för vård i livets slutskede
  14. 2020 presentation of the research Space and Place inEnd of Life Care focusing on transdisciplinarity, research questions, preliminary findings and sharing the many dissemination formats the project has produced. Stockholm University of the Arts
  15. 2020. Hilton R. Keynote speaker at Community Dance Network, Göteborg. Transdisciplinarity, Choreography and the end-of-life
  16. 2020. Tishelman Invited moderator, Conference Public Health Research in Palliative Care: Towards Solutions for Global Challenges, on-line conference. Co-moderator with Prof Joachim Cohen, session “Social Models of Health”
  17. 2019. Hilton R. Invited keynote speaker at Hugarflug – the Iceland University of the Arts annual conference, presentation based on participation in research program DöBra https://www.lhi.is/en/hugarflug-20192019.
  18. 2019. Hilton R. Invited keynote ‘Productive Gaps’, at the 10th SAR International Conference on Artistic Research, Zurich University of the Arts https://sar2019.zhdk.ch/
  19. 2019. Tishelman October 30, 2019: Annual Invited Trevor Anderson Oration, Peter MacCullen Cancer Center, Melbourne Australia, lecture entitled “Going Public: Working together to improve the end-of-life. Examples from the DöBra Research Program”
  20. 2019. Tishelman, Kleijberg: Invited guest speakers at round table discussion based on prior public presentation (Oct 21st) at RMIT (Royal Melbourne Institute of Technology) arranged by RMIT and CAST (Hub for Contemporary Art and Social Transformation)
  21. 2019: Tishelman, Kleijberg Invited public lectures on DöBra research program at RMIT (Royal Melbourne Institute of Technology) Health Transformation Lab
  22. 2019: Tishelman 6th Public Health Palliative Care International Conference, Blue Mountains Australia: Invited speaker, pre-conference workshop on methods for investigating end-of-life issues from a public health perspective
  23. 2019: Kroik Samisk helse- og sosialfaglig seminar för samisk kultur och hälsa, Aajejege Stjördal, Norway. När kallkällan sinar – Kunskap från det förflutna för att möta framtidens vård
  24. 2018: Eneslätt, Goliath, Kleijberg Sjuksköterskedagarna, Stockholm. ”Hur kan vi prata om döende och död, exempel från forskningsprogrammet DöBra”, DöBra café and lectures
  25. 2018 Goliath Invited presentation on Space and Place for end-of-life in elder care. Strategic Research Area Health Care Sciences Conference, KI & Umeå University.Sundsvall, November 27-28
  26. 2017: Goliath. Advances in Health Care Science. Plenary speaker ’Action research for improved experience of environments for the end-of-life.
  27. 2017: Tishelman. 9th International Learning Collaborative Annual Conference and Summit; Uppsala Sweden:  Invited speaker “Partnership in palliative care – From confirmation to collaboration”, ca 1 hour presentation
  28. 2017. Tishelman. 15th World Conference of the European Association for Palliative Care, Madrid Spain. Invited speaker for Meet the Expert Session, “How to Research Community Development in Palliative and End-of-Life Care”
  29. 2016: Eneslätt Plenary speaker European Oncology Nurses Society 10th conference, Dublin, Irland. “Encouraging early conversations about values and preferences for future end-of-life care”

E.3. Abstract-based oral/workshop presentations at International and National Conferences

  1. 2022: Kleijberg et al. 7th Public Health Palliative Care International Conference, Brugge, Belgium. “Play elements in intergenerational arts activities to support engagement with end-of-life issues – Studio DöBra”
  2. 2022: Kleijberg et al. 7th Public Health Palliative Care International Conference, Brugge, Belgium. “Investigating impact development in Studio DöBra, a community-based participatory action research project to strengthen community engagement with end-of-life issues”
  3. 2022: Kleijberg et al. 7th Public Health Palliative Care International Conference, Brugge, Belgium. Workshop “A design approach to transdisciplinary end-of-life care challenges.”
  4. 2022: Eneslätt, Helgesson, Tishelman 7th Public Health Palliative Care Int’l Conference, Brugge, Belgium. “Dissemination, Use and Impact of a Community-based Advance Care Planning Intervention: Ripple Effects of the Swedish DöBra cards”
  5. Johansson T, Tishelman C, Eriksson LE, Cohen J, Goliath I. 7th Public Health Palliative Care International Conference, Brugge, Belgium Factors influencing death literacy in a Swedish sample.
  6. 2022: Johansson T, Vanderstichelen S, Tishelman C, Noonan K, Leonard R, Olsson Å, Eriksson LE, Goliath I & Cohen J. 7th Public Health Palliative Care Int’l Conference, Brugge, Belgium. Workshop: Participatory workshop on the Death Literacy Index: Examination and reflection about its cross-cultural relevance and viability
  7. 2022: Tishelman C, Noonan K, Enelätt M, Kleijberg M 7th Public Health Palliative Care Int’l Conference, Brugge, Belgium. Workshop: It takes a village- Exploring potentials and limitations in applying the Death System concept in Public Health Palliative Care
  8. 2022: Eneslätt et al Nationella konferensen i Palliativ vård, Göteborg. “Att engagera allmänheten i frågor om döende, död och sorg” (Presentation av två abstrakt)
  9. 2022 7:e nationella konferensen I palliativ vård. Presentation title: DöBra Ateljé – Lek i generationsöverskridande konstnärliga aktiviteter för att underlätta engagemang i frågor som rör döende, död och sorg. Presenter: Max Kleijberg
  10. 2020: Kleijberg et al 2nd International Seminar on Public Health Research in Palliative Care, online. “Reflections from children and older adults participating in community-based arts initiatives about dying, death, and loss in Sweden.”
  11. 2020: Kleijberg et al 2nd International Seminar on Public Health Research in Palliative Care, online. “Using elements of play in arts activities to engage communities with end-of-life issues”
  12. 2020: 6th Swedish national palliative care conference, Sweden, Goliath I, Eneslätt M, & Johansson T. DöBra – conversations about preferences for end-of-life care.
  13. 2020: Eneslätt et al 2nd International Seminar on Public Health Research in Palliative Care, online. “Same, same, but different? A longitudinal mixed-methods study of changes in values and preferences for future end-of-life care among community-dwelling, older adults in Sweden”
  14. 2020. Nilsson F. at Relating Systems Thinking and Design Symposium, The National Institute of Design Ahmedabad. Embodying Design Questions: Playful explorations in critical health and care systems (based on Space and Place in EoL Care)
  15. 2019: 6th Public Health Palliative Care International Conference, Australia, Workshop session. Tishelman C, Goliath I, Eneslätt M, Hilton R, Johansson T, & Kleijberg M. for the DöBra Research Program. Knowledge exchange, Sustainability and Innovation: examples from the DöBra Research Program.
  16. 2019: Kleijberg et al 6th Public Health Palliative Care International Conference, Australia. “Navigating power dynamics in engaging communities in end-of-life issues, Studio DöBra”
  17. 2019: Eneslätt et al 7th Advance Care Planning International, Rotterdam, Nederländerna. “SweACP: A Structured Conversation-based Advanced Care Planning Approach in the ACP-naïve Swedish Context”
  18. 2019: Eneslätt et al Advances in Health Care Sciences Research Conference, Stockholm. “Exploring Considerations about Values and Preferences for Future End-of-Life Care”
  19. 2019. Goliath et al. World Research Congress of the European Association for Palliative Care, Berlin. Feasibility of participatory co-design in elder care—Lessons learned from a residential care home in Sweden.
  20. 2019. Goliath et al. World Research Congress of the European Association for Palliative Care, Berlin. The private home as a shared space and place for co-care—A photo-elicitation study with palliative care nurses.
  21. 2018: Public Health Research in Palliative Care Seminar, Belgium. Goliath et al. Using participatory co-design to create supportive end-of-life environments in elder care—An exemple from a residential care home in Sweden.
  22. 2018: Kleijberg et al International seminar on Public Health Research in Palliative Care, Bryssel, Belgien. “Navigating power and responsibility in developing an intergenerational and arts-based initiative about death and loss as part of the Swedish DöBra research program.”
  23. 2018: Johansson T, Tishelman C, Eriksson LE, Cohen J, Goliath I. Public Health Research in Palliative Care Seminar, Belgium.Exploring a conversation tool for reflection about the end of life in elder care.
  24. 2018: Eneslätt et a.l International seminar on Public Health Research in Palliative Care, Bryssel, Belgien. “A Conversation-based Intervention for Clarifying Values and Preferences for End-of-Life in the Advance Care Planning-naïve Swedish Context”
  25. 2017: Eneslätt et al. 5th International Public Health and Palliative Care Conference, Ottawa, Canada. “Using Hands on Tools To Facilitate Conversations about Values and Preferences for Future End-of-Life Care”
  26. 2017: Kroik. 5th International Public Health and Palliative Care Conference, Ottawa, Canada. Conversations by the open fire: learning from the past to meet the future
  27. 2017: Kleijberg 5th International Public Health and Palliative Care Conference, Ottawa, Canada. The challenges and possibilities of “the adults in between”
  28. 2017: Eneslätt Advances in Health Care Sciences Research Conference, Stockholm. “Swe-ACP: A feasibility study using a translated and adapted version of GoWish cards in the ACP-naïve Swedish context”
  29. 2017: Hajradinovic, Y. Tishelman, C. Lindqvist, O. Goliath, I. World Research Congress of the European Association for Palliative Care, Madrid Family members´ stories about their photographs of the end-of-life care environments in acute care hospitals.
  30. 2016: Eneslätt Nationella konferensen i palliativ vård, Malmö. “Swe-ACP: Utveckling och testning av en intervention med strukturerade samtal om värderingar och prioriteringar för kommande vård i livets slutskede”
  31. 2016: Malmö, Nationella palliativa konferensen. Kroik et al Samer och vård i livets slutskede- kunskap om traditioner för att möta framtidens vård

E.4. Abstract-based poster presentations at International and National Conferences

  1. 2023: Kleijberg et al. Conference European Association for Palliative Care: “Creating spaces in Sweden for children and older adults to engage with end-of-life issues through arts activities—Studio DöBra”
  2. 2022: Johansson, Olsson, Tishelman, Noonan, Leonard, Eriksson, Goliath, Cohen. 26th Nordic Congress of Gerontology in Odense, Denmark. “A Swedish version of the Death Literacy Index – translation, cultural adaption, and validation”.
  3. 2021: Eneslätt, Helgesson, Tishelman European Association of Palliative Care 17th World Congress Online. “Dissemination, use, and impact of a community-based advance care planning intervention: Ripple effects of the Swedish DöBra* cards”
  4. 2021: Johansson T, Tishelman C, Eriksson LE, Cohen J, Goliath I. European Association for Palliative Care 17th World Congress, virtual conference, Impact of Using of a Tool to Stimulate Reflection about End-of-Life Communication in a Competence-building Initiative in Swedish Elder Care.
  5. 2020. Public Health Research in Palliative Care Seminar of the EAPC Research Network, Nov 2020, Northern Ireland. Johansson T, Tishelman C, Eriksson LE, Cohen J, Goliath I. Exploring change in a series of workshops about end-of-life conversations among elder care staff in Sweden.
  6. 2020: 6th Swedish national palliative care conference, Sweden, Goliath I, Eneslätt M, & Johansson T. DöBra – conversations about preferences for end-of-life care.
  7. 2020: 6th Swedish national palliative care conference, Sweden. Johansson T, Tishelman C, Eriksson LE, Cohen J, Goliath I. Acceptability and perceived usability of a conversation tool about end-of-life care with staff in residential elder care.
  8. 2020: 6th Swedish national palliative care conference, Sweden.  Kroik L. Det förflutna är närvarande: Dödssystem bland urfolket samerna i Skandinavien
  9. 2020 6:e Nationella konferensen i palliativ vård, Östersund, Sweden. DöBra Ateljé Verktygslåda – Att använda konst för att stödja samtal mellan barn och äldre om döende, död och sorg. Kleijberg, M. et al
  10. 2019: Advances in Health Care Sciences Conference, Sweden, Poster and oral presentation. Nominated for Best Poster Award. Johansson T, Tishelman C, Eriksson LE, Cohen J, Goliath I. Acceptability and perceived usability of a conversation tool about end-of-life care with staff in residential elder care.
  11. 2018: Eneslätt et al Nationella konferensen i Palliativ vård, Stockholm. ”Swe-ACP: A feasibility study using a translated and adapted version of GoWish cards in the ACP-naïve Swedish context”
  12. 2018 March 21-23, 5:e Nationella konferensen i palliativ vård, Stockholm, Sweden. Poster title: Reflections on developing a community-based program to stimulate intergenerational conversations about death and loss. Presenter: Kleijberg, M.
  13. 2018: Kroik, Staare. 2018Region Jämtland Härjedalen.Samtal vid elden: Kunskap från det förflutna för att möta framtidens vård(Talking around the fire: knowledge from the past for care for the future)
  14. 2017 Nov. 15, Advances in Health Care Science Research, Stockholm, Sweden. Poster title: Reflections on developing a community-based program to stimulate intergenerational conversations about death and loss. Kleijberg, M., et al.
  15. 2017: Eneslätt et al 6th Advance Care Planning and End-of-Life Care Conference, Banff, Canada. “SweACP: A feasibility study using a translated and adapted version of GoWish cards in the ACP-naïve Swedish context”
  16. 2017: 6th International Society for Advance Care Planning and End-of-Life Care Conference, Sep 2017, Canada Poster presentation. Henriksson Eneslätt M, Tishelman C, Johansson T, Lindqvist O. Swe-ACP: Results of a feasibility study using a translated and adapted version of GoWish cards in the ACP-naïve Swedish context.

E.5. Other forms of interactive knowledge exchange

  1. 2023 Eneslätt. Workshops in Piteå municipality. Exploring proactive EoL conversations (Workshops with all RNs in Piteå municipality elder care)
  2. 2023 Kleijberg. Seminar at Halmstad University: Hur kan vi bedriva forskning i samverkan med samhällsaktörer och strukturellt marginaliserade grupper?
  3. 2022 Kroik.  Vaarduo/department of caring sciences, Umeå University, Sámi and the end of life – knowledge about traditions to develop care for the future
  4.  2022. Kroik. Centre for rural medicine. ST-läkarnas mote. Sámi and the end of life – knowledge about traditions to develop care for the future18. 2022.  Kroik. Centre for rural medicine. Backe hälsocentral. Sámi and the end of life – knowledge about traditions to develop care for the future
  5. 2022. Kroik. Frukostwebbinarium Region Västerbotten https://sway.office.com/tyGq9wo8gaNXkl7B?ref=Link&loc=mysways. Sámi and the end of life – knowledge about traditions to develop care for the future
  6. 2022. Kroik. SFPO Växjö Linneuniversitetet (palliativt nätverk för sjuksköterskor), Sámi and the end of life – knowledge about traditions to develop care for the future
  7. 2022. Kroik. Centre for rural medicine. WHO Europe. Sámi and the end of life – knowledge about traditions to develop care for the future
  8. 2022 Kleijberg. Presentation at St Christophers Hospice, London, England. Engaging children and older adults in end-of-life issues through arts activities, findings from Sweden.
  9. 2022 Kleijberg. Presentation at University of Victoria, Canada. Creating space for community engagement with end-of-life issues through intergenerational arts activities: Findings from Sweden.
  10. 2021 Eneslätt: För blandad publik vid Mötesplats Social Innovation, Luleå tekniska universitet, Luleå. ”DöBra-kortleken
    Samtal om döende, död och framtida vård i livets slutskede”
  11. 2021 Kroik: Sámi Parlament, Sámi and the end of life – knowledge about traditions to develop care for the future
  12. 2021  Eneslätt För anhörigstödjare, Vallentuna kommun (online). ”DöBra-kortleken Samtal om döende, död och framtida vård i livets slutskede”
  13. 2021 Kroik: Åånnghkeren saeminensibrie, Ankarede, Sámi and the end of life – knowledge about traditions to develop care for the future
  14. 2021 Johansson Academic Inspiration Day arranged by Stockholm City Elder Care Bureau
  15. Vaarduo/Omvårdnadsinstiutionen Umeå University, Sámi and the end of life – knowledge about traditions to develop care for the future
  1. 2020  Eneslätt, Tishelman. För vårdpersonal vid Centrum för Cystisk Fibros, Karolinska Universitetssjukhuset, Stockholm. ”Strukturerade samtal
    om värderingar och prioriteringar om vård och omsorg i livets slut”
  2. 2020 Kleijberg & community partners, a workshop to kick off a spin-off project led by a community partner using the Studio DöBra Toolbox
  3. 2020 Nilsson F. presents På Plats at the Academic Inspiration day arranged by Stockholm City Elder Care Bureau
  4. 2019-20 A series of 10 knowledge exchange workshops with staff in 4 city districts in Stockholm to co-develop a protocol for perform proactive EoL conversations about values and priorities in eldercare.
  5. 2019 Johansson, Goliath, et al Academic Inspiration Day for about 80 participants arranged by Stockholm City Elder Care Bureau
  6. 2019 Eneslätt För kollegor vid Nobla dagen, Luleå tekniska universitet, Luleå. ”Swe-ACP:
    Hur resonerar äldre personer om sina värderingar och prioriteringar inför kommande vård i livets slut?”
  7. 2019 Eneslätt För vårdpersonal inom palliativa rådgivningsteam i de norra sjukvårdsregionerna (online). ”Swe-ACP –
    Tidiga samtal om värderingar och prioriteringar inför kommande vård i livets slut”
  8. 2019  Eneslätt, Goliath, Kleijberg, Tishelman För allmänheten vid seminariet ’PS. Om jag dör’ anordnat av Fjällmans begrvaningsbyrå. Clarion Hotel Post, Göteborg.
  9. 2019. Johansson & Goliath. Seminar about structured conversations about values and preferences for end-of-life care in elder care for the social care service provider Ambea.
  10. 2019. Kleijberg & community partners: Stockholm Stads Äldreförvaltning, Presentation av DöBra Ateljé Verktygslåda
  11. 2019. Kleijberg Karolinska Institutet, Engagement Grant workshop. From Researcher Initiated to Community Driven, Studio DöBra
  12. 2019. Kleijberg & community partners: Inspirationsdagen Halland (educational day for healthcare staff in the region of Halland) Workshop “DöBra Ateljé Halmstad”
  13. 2019. Westerlund, Goliath, Hilton, Nilsson. Workshop Research in a new way (forskning på ett nytt sätt), in which elder care residents, family members, managers, researchers and volunterrs participated in discussion of research results, ideas and ways of working that were generated in Space and Place component of DöBra research program.
  14. 2018-2019: Hilton R (prof of choreography, focus on place and interaction), Nilsson F (doctoral student in design). ‘On Site’ (På Plats) ”På plats” was an art and design research residency that was carried out at Mälarbacken during the fall of 2018, several hours each week. An artistic research residency is when artists temporarily move their activities to a new location and the artistic exploration provides the opportunity to exchange ideas and collaborate with a new group of people. The artists-in-residence arranged ‘mini-interventions’ to stimulate engagement, e.g. art galleries on dinner tables, prototypes, etc. The material collected and produced in the form of anecdotes, photographs, drawings, quotes and essays will hopefully be presented in a upcoming book. forA (fora-ontheurban.net)
  15. 2018-19 Goliath, Stranz, Westerlund, Hilton, Nilsson. Residents, family, staff and researchers exchanged knowledge through participatory design workshops at one of Sweden’s largest RCHs. A total of 44 people—18 residents, 3 family members, 17 staff, and 6 researchers (aged 26 – 101 years)—have attended one or more of 19 workshops. 
  16. 2018. Goliath. DöBra—communication about values and preferences for EoL care (Samtal om värderingar och prioriteringar inför kommande vård i livets slutskede). Inspiration Day about patient influence at New Karolinska Univerity Hospital Solna
  17. 2018. Johansson Workshops requested by the Association for palliative care nurses
  18. 2018. Johansson. Network for palliative care in elder care in Stockholm
  19. 2018  Eneslätt För blandad publik vid Nobla dagen, Luleå tekniska universitet, Luleå. ”Swe-ACP: Att främja samtal om kommande vård i livets slutskede genom en strukturerad metod”
  20. 2018 Kleijberg Stockholm Stads Äldreförvaltning “DöBra Ateljé”
  21. 2018. Goliath, Johansson, Hilton, Tishelman et al. A hand festival took place at one of Sweden’s largest nursing homes to highlight the salient role of touch in communication and giving/receiving care, and was documented by professional videographers (see products above). There were about 80 elderly people, relatives, staff, researchers, volunteers who had the opportunity to get a hand massage, see a magician, hear a musician, have their hands drawn, knit, work with clay, fold origami, be told fortunes etc. The film Handfestivalen gives the opportunity to understand more about the meaning of common experiences regardless of the role the person has in the accommodation. Based on this, Macarow K and Hilton R arranged a Melbourne Hand Festival in 2019 at the WellBeing Center of Peter MacCallum Cancer Centre https://www.petermac.org/events/handfestival-2019

för staff, patients, informal carers, family and friends

  • 2018. Kroik. The Past is the Present: Death Systems among the Indigenous Sámi in Scandinavia. Lunchseminarium för LIME på KI, under GMC dagarna i augusti
  • 2018 Kroik Staare 2018, Samers tankar om livets slut (Sámi perspectives on the EoL), arranged by Rural Medical Centre at MIUN
  • 2017-18 Goliath and Johansson held 27 knowledge exchange workshops about conversations about values and priorities about end of life care in elder care with management and eldercare staff in 3 city districts in Stockholm.
  • 2017 Kroik Arvidsjaur samiska kyrkodagarna  När kallkällan sinar – vård vid livets slut
  • 2017 Kroik Glesbygdsmedicinska föreningen, Härnösand Samer och vård i livets slut – en resa i tid och rum
  • 2017 Kleijberg: Stockholm Stads Äldreförvaltning “Döden som en social fråga – Att engagera äldre och barn genom konst”
  • 2017 Kleijberg: Earl Mountbatten Hospice, Isle of Wight, England “Children and elderly create art projects about death and loss – experiences from Sweden”
  • 2016 Eneslätt För vårdpersonal vid Palliativa vårdavdelningen, Sunderby sjukhus, Luleå. ”Encouraging early
    conversations about values and preferences for future end-of-life care”
  • 2016 Tishelman: Invited half-day lecture presentation, Folkhälsan Helsinki Finland, on Theme Co-Care, entitled “Patient involvement in care: a research-based perspective”
  • 2016 Kleijberg: Stockholm Stads Äldreförvaltning “Döden som en social fråga – Att engagera äldre och barn genom konst”
  • 2015 Tishelman & Lindqvist: Invited presentation for End-of-life Research Group, Vrieje University Brussels Belgium, “Integrating palliative care, health promotion and public health in Sweden
  • 2015 Eneslätt För PRO-medlemmar vid olika tillfällen vid 7 lokalföreningar inom PRO Luleå. ”Forskningsprogrammet DöBra:
    Vård i livets slutskede ur ett folkhälsoperspektiv”
  • 2015  Eneslätt and Tishelman För allmänheten vid DöBra-café, Nattfestivalen, Korpilombolo. ”Hälsofrämjande palliativ vård i Sverige – om DöBra-programmet”

 

F. Undergraduate/Master/Magister/MD Students affiliated with the program

  1. 2022 Simon Efremius, MD student thesis, Karolinska Institutet (see article #40 in progress)
  2. 2021 Simon Beck, community nursing masters student, University College Dalarna (see article #7 above)
  3. 2021 Lina Lundblad, community nursing masters student, University College Dalarna (see article #7 above)
  4. 2021 Sofia Weiss Goitiandia, Masters of Public Health Karolinska institutet. To do: nothing, stay home, wear a face mask.” A qualitative analysis of drawings by thirteen- to fifteen-year-old children in Sweden about the first wave of the COVID-19 pandemic. (see article #6 above)
  5. 2018 Caroline Westerlund, MD, ST-thesis, published in form of article (see article #25 above)
  6. 2017 Maria Mjörnberg RN, Palliative care master student. “Nurses’ experiences of the home as a care environment for patients at the end-of-life”,  Marie Cederschiöld University. (see article #24 above)
  7. 2016 Yvonne Hajradinovic, master’s student nursing (2016) Family Members´ Experiences Of The End-Of-Life Care Environment In Acute Care Settings  – A Photo- Elicitation Study , Ersta-Sköndal University College (see article #28 above)
  8. 2014 Annegret Trinczek, baccalaureate student public health Karolinska Institutet “Health-promoting palliative care: a systematic overview of evaluations”

G. International researcher collaboration and exchange

  1. 2021-present: Johansson, Goliath, Olsson, Tishelman, Eriksson Swedish representatives in an international collaboration to translate and validate the Death Literacy Index, with representatives from Belgium, the Netherlands, and Australia
  2. 2021-ongoing: Tishelman Affiliated member of European Association for Palliative Care Reference Group on Public Health and Palliative Care, and member of project group for a Delphi Study on research priorities
  3. 2020-present: Transdisciplinary collaboration for analysis of crowdsourced data (~8000 individual submissions) collected by ca 20 Swedish museums and archives about experiences of living in Sweden during the Covid-19 pandemic. This collaboration includes representatives for diverse disciplines and with diverse backgrounds, including Artificial Intelligence, Natural Language Processing, Social Psychology, Political Philosophy, Nursing, Museum Curators, Life Science, Choreography, Ethnography, Ethics, including researchers Johanna Degen and Andrea Kleeberg-Niepage from Flensburg, Germany
  4. 2021- present Lena Kroik, expert representative from Sweden in the Committee for ethicial Sámi research, Norwegian Sámi Parliament
  5. 2022 and 2015 Meetings in Edinburgh, Scotland with Mark Hazelwood, CEO Scottish Partnership for Palliative Care and group, and in 2015 with prof Scott Murray, University of Edinburgh about DöBra and relationship to their work, in 2022
  6. 2020-2023 Eneslätt. Editor of European Association for Palliative Care Reference Group on Public Health and Palliative Care newsletter
  7. 2015, 2019- Bruce and Jean Rumbold, researchers in health-promoting palliative care, LaTrobe University Melbourne Australia, Invited to Huss seminar arranged by DöBra program on May 18, 2015; BR keynote speaker at 1st general DöBra program meeting May 19, both participants in DöBra workshop; 2019 Kleijberg & Tishelman visit their group in Melbourne.
  8. 2018-ongoing: Eriksson has a position at City, University of London, where he has been instrumental in disseminating research, findings and products from the DöBra research program
  9. 2015 Glenn Robert, Alastair Macdonald, with DöBra senior researchers CT, Oli, IG and junior researchers HK, MKàcontinued collaboration with total 4 meetings in 2015, Alastair Macdonald co-supervisor to HC and MK until 2017, 2018 respectively.
  10. Keely Macarow—repeated visits here and Tishelman and Kleijberg visit her group in Australia; some initiatives to replicate portions of DöBra in Melbourne, e.g. handfestival
  11. From 2014-ongoing (from 2019 named EPICEUR (End of life and Public health Initiative for Collaborative European Research), Tishelman and Lindqvist initiated this consortium to advance research investigating public health approaches for palliative and end-of-life care, with representatives now including senior and junior researchers from Belgium, the UK (England and Scotland) and Sweden. This has provided an important forum for exchange, particularly for junior researchers from doctoral phase and on in their career development.
  12. From 2015: Nigel Hartley, CEO Earl Mountbatten Hospice, mentor for MK doctoral project, Kleijberg has had repeated visits to Earl Mountbatten Hospice, including conference presentations
  13. 2015: Application granted through KI:Mayo clinic collaborative travel grant program for two Mayo Clinic palliative care physicians/researchers (Maria Lapid, Elise Carey) for exchange with DöBra research program

H. Collaborating community and academic partners

H.1.Project component Swe-ACP (lead initially Lindqvist/Tishelman, from 2018 lead Eneslätt)

Pär Rahmström, then chair Demensförbundet

Janette Bäckström, then boardmember i PRO riks

Britta Håkans, then boardmember i PRO riks and chair PRO Örnsköldsvik

Tommy Björk, then Chair Stödet/Lung cancer support organization

Jonas Engman, etnolog och PhD, the Nordic museum Disp 1999-02-15

Gerdt Sundström, professor emerita in Gerontology Jönköping University College and representantative for SPF Huddinge

Arja Leppänen, patient representantive for Network against Cancer, then board member of Organisation for family members to people with cancer and Strategist for welfare and public health Region Sörmland

Elizabeth S. Menkin, specialist palliative care physician, developer of original GoWish cards

Camilla Göras, University lecturer, Dalarna University College

Andreas Koro, primary care physician Själevads primary care center, Chair of Ångermanlands physician organization

Simon Beck RN, then student in graduate program in community nursing, Dalarna University College

Lina Lundblad, then student in graduate program in community nursing, Dalarna University College

Catharina Melander, University Lecturer and head educator for specialist community nursing program/elder care program, Luleå University of Technology

Ingela Jobe, then University Lecturer and head educator, undergraduate nursing program, Luleå University of Technology

Vardduo Umeå universitet https://www.sapmi.se/  https://www.umu.se/vardduo-centrum-for-samisk-forskning/

International Academic Partners:

Lieve Van Den Block, professor, Vrije Universiteit Brussels

Charlèss Dupont, doctoral student, Vrije Universiteit Brussels

Tinne Smets, assistant professor, Vrije Universiteit Brussels

Fanny Monnet, doctoral student, Vrije Universiteit Brussels

H.2. Studio DöBra (lead Kleijberg)

In Skärholmen: Children’s library, Design Lab S, Eken meeting place for older people, Afterschool facility (Fritidsverskamhet) for Children

In Halmstad: Municipal organisations for home care, culture, children and meeting place for older people, Afterschool facility for children

H.3. EoL conversations in Elder care component (lead Goliath, with Johansson and Olsson)

This research was developed by Goliath in collaboration with Stockholm City Elder Care Bureau as part of an effort to build staff competence for EoL care provision in residential elder care. Stockholm City Elder Care Bureau is responsible for 11000 employees caring for ~27 000 elder persons in Stockholm. To date, Goliath’s both teams (see also Space and Place in EoL Care component) have worked with 20 services, of which the majority have voiced their interest of continued collaboration.

Stockholm Stad: Lena Alksten strategist, City district managers: Odini Nzeribe, Leif Kanaanen, Lena Slotte; Odini Nzeribe, Service managers: Gosia Holmberg, Ximena Samuesson, Annette Tingström, Sophie Andersson, Rebecca von Scheele, Maria Granlund, Arja Hellborg, Fadia Bachir

Others: Maria Bende-Rydell, Ulrika Dahnell

Project group: Ray Now, Patricia Solesi, Laura Tsarouha, Hirity Habtemicale

Ambea/Vardaga: Kristina Alexandersson & Anna Bossen, Service managers: Pia Henriksson, Linda Öfors

Project group:, Anders Danielsson, Lusine Danielyan, Daniel Mårs, Madeleine Lindqvist

Management and staff at residential care homes: Serafen, Pilträdet, Fridhemmet, Högdalen, , Enskede Dalens Servicehus, Villa Tärnö, Villa Agadir, Katarinagården, Rio, Fruängsgårdens VOB, Axgården, Fruängsgårdens servicehus, Stureby, Kista, Alströmerhemmet and staff from another 5 residential care homes managed by Ambea/Vardaga.

Project group:, Anders Danielsson, Lusine Danielyan, Daniel Mårs, Madeleine Lindqvist

International Academic Partners:

Prof Joachim Cohen, Vrije University Brussels

Dr Steven Vanderstichelen, Vrije University Brussels

Dr Keerie Noonan, Western Sydney University

Dr Rosemary Leonard, Western Sydney University

Dr C.M. Groot, University College Rotterdam

Statisticians Aleksandra Sjöström-Bujacz and Leo Kowalski

H4 Space and Place in EoL care (lead Goliath, with Hilton, Tishelman et al)

Bromma city district elder care

Mälarbackens residential care home, including residents, family , staff, managers, quality assurance staff, and unit leaders  

Kungsholmens city district elder care

Serafens residential care home, including health and care staff, residents, family, managers, RNs and unit leaders

Academic Partners:

Keely Macarow, RMIT, Melbourne Australia

Prof Bo Westerlund, Stockholm University College of Art, Design and Craft

Prof Rebecca Hilton, Stockholm University of the Arts

Felicia Nilsson, doctoral student, Oslo

Dr Annelie Stranz, Stockholm University Dept of Social Work

Prof Alastair Macdonald, Glasgow School of Art

Prof Glenn Robert, King’s College London

H5 Sámi and the EoL (Lead Lindqvist, Tishelman/Kroik from 2018)

Ewa Ljungdahl, arkeolog, Gaaltije – Sydsamiskt kulturcentrum, Östersund

Ingrid Rehnfeldt, renägare fd ordförande Mittådalens sameby – Östersund

Glesbygsmedicinskcentrum (GMC): Centre for Rural Medicine, Storuman

Várdduo: Centre for Sámi Research

Svenska Samernas Riksförbund, Ella Carin Blind, Jenny Wik Karlsson

I.                 Selected Academic Distinctions/Awards/Other

1.Karolinska Institutets Kulturpris 2021
Recipient: Professor Carol Tishelman and DöBra Research Program Team

Motivation: Professor Carol Tishelman and her team received KI’s cultural award in 2021 for their innovative work with the research program DöBra. In their research, they have shown an outstanding ability to combine art and science to raise and investigate questions about dying, death and grief. Carol Tishelman and her team have, in partnership with individuals – healthy and ill—, relatives, healthcare professionals, associations and other societal groups and agencies and through interdisciplinary collaborations conducted participatory research on how culture, environment and conversation can support people to prepare for the end of life. Great importance has been placed on the utilization and dissemination of research results, via exhibitions and interactive events in collaboration with museums and interest associations.

2. 2018 -2019 Ida Goliath, Two-year fellowship, received in competition, from the Strategic Research Area Health Care Science (SFO-V) at Karolinska Institutet. Fully financed research for two years. 

3. Samiska minnesfondens stipendium 2020. Recepient: doctoral student Lena Kroik. Motivation: Samiska minnesfondens stipendium 2020 https://densamiskaminnesfonden.se/stipendium/