{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,13]],"date-time":"2026-09-13T17:03:30Z","timestamp":1789319010809,"version":"build-2803163510"},"reference-count":67,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T00:00:00Z","timestamp":1788220800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T00:00:00Z","timestamp":1788220800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"Stockholm Gerontology Research Center"},{"name":"Nurses for Palliative Care Association"},{"name":"Ribbingska Minnesfonden \u2013 Association for Elderly Care and Gerontology"},{"name":"Stockholm City District Enskede-\u00c5rsta-Vant\u00f6r"},{"name":"Swedish Nurses Association"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat&amp;#65533;Care"],"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Active involvement of residents, family members and staff in proactive end-of-life conversations remains uncommon in residential care facilities for older people, although these are common settings for the end-of-life. This study derives from a Participatory Action Research project with an intervention aimed at developing Death Literacy among residential care staff, to promote implementation of proactive end-of-life conversations.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>This article has a two-fold aim: (1) to investigate effects and forms of impact derived from this project intending to improve Death Literacy, and (2) to discuss challenges in this investigation and contribute to critical debate and further inform the use and development of the Death Literacy concept and related index (DLI).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We combined quantitative analysis of pre-post intervention DLI survey data from staff and qualitative framework analysis of official documents along with transcribed interviews and workshop data from various staff groups. The framework was based on a matrix with Death Literacy features on one axis and forms of impact on the other.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The DLI showed no positive change over time. Effect evaluation was challenged by high baseline mean scores and ceiling effects on the DLI, and issues associated with the use of a participatory research approach, e.g. baseline differences between groups related to recruitment strategies. However, qualitative findings indicated all three forms of impact described in Kleijberg et al.\u2019s model: impact on individual and group development, action-oriented impact, and strategy-oriented impact. These were seen to be related to all Death Literacy features, most notably experiential learning and social action.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Features of Death Literacy were relevant in understanding impact, although the usefulness of the DLI to measure change over time was limited in this study. A matrix framework provided nuanced insight beyond either model alone. Congruence of different methodological assumptions should be carefully considered when designing investigations of effect and impact of complex interventions with limited researcher control.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/26323524261488419","type":"journal-article","created":{"date-parts":[[2026,9,11]],"date-time":"2026-09-11T16:14:17Z","timestamp":1789143257000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Investigating effect versus impact in a participatory action research project: Building end-of-life communication competence in residential care facilities for older people"],"prefix":"10.1177","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1435-1293","authenticated-orcid":false,"given":"\u00c5sa","family":"Mikaelsson","sequence":"first","affiliation":[{"name":"Karolinska Institutet"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4161-0342","authenticated-orcid":false,"given":"Carol","family":"Tishelman","sequence":"additional","affiliation":[{"name":"Karolinska Institutet"},{"name":"Stockholm County Council"},{"name":"Vrije Universiteit Brussel and Ghent University"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5349-5041","authenticated-orcid":false,"given":"Kerrie","family":"Noonan","sequence":"additional","affiliation":[{"name":"Western NSW Local Health District"},{"name":"La Trobe University, Bundoora Campus"},{"name":"Death Literacy Institute"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Leo","family":"Kowalski","sequence":"additional","affiliation":[{"name":"Karolinska Institutet"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4036-707X","authenticated-orcid":false,"given":"Max","family":"Kleijberg","sequence":"additional","affiliation":[{"name":"Karolinska Institutet"},{"name":"M\u00e4lardalen University"},{"name":"Regional Cancer Centre Stockholm - Gotland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6101-5925","authenticated-orcid":false,"given":"Therese","family":"Johansson","sequence":"additional","affiliation":[{"name":"Karolinska Institutet"},{"name":"King\u2019s College London"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0854-8631","authenticated-orcid":false,"given":"Terese","family":"Stenfors","sequence":"additional","affiliation":[{"name":"Karolinska Institutet"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5121-5325","authenticated-orcid":false,"given":"Lars E.","family":"Eriksson","sequence":"additional","affiliation":[{"name":"Karolinska Institutet"},{"name":"University of London"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8245-5479","authenticated-orcid":false,"given":"Ida","family":"Goliath","sequence":"additional","affiliation":[{"name":"Karolinska Institutet"},{"name":"Stockholm Gerontology Research Center"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,9,11]]},"reference":[{"key":"e_1_3_9_2_2","doi-asserted-by":"publisher","DOI":"10.1080\/09699260.2015.1103498"},{"key":"e_1_3_9_3_2","volume-title":"A 'new public health' perspective on building competence for end-of-life care and communication: how death literacy can be developed and measured","author":"Johansson T","year":"2022","unstructured":"Johansson T. A 'new public health' perspective on building competence for end-of-life care and communication: how death literacy can be developed and measured. Inst f\u00f6r neurobiologi, v\u00e5rdvetenskap och samh\u00e4lle \/ Dept of Neurobiology, Care Sciences and Society, 2022a."},{"key":"e_1_3_9_4_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12877-022-02915-w"},{"key":"e_1_3_9_5_2","first-page":"1","article-title":"Developing a death literacy index","volume":"46","author":"Leonard R","year":"2021","unstructured":"Leonard R, Noonan K, Horsfall D, et al. Developing a death literacy index. Death studies 2021; 46: 1\u201313. https:\/\/doi.org\/10.1080\/07481187.2021.1894268","journal-title":"Death studies"},{"key":"e_1_3_9_6_2","volume-title":"Health Do","author":"Australian Government Department of Health","year":"2023","unstructured":"Australian Government Department of Health. National Aged Care Mandatory Quality Indicator Program Manual 3.0 and 4.0 \u2013 Part A. In: Health Do. Department of Health, 2023."},{"key":"e_1_3_9_7_2","volume-title":"Death Literacy Index: A report on its development and implementation","author":"Leonard R","year":"2020","unstructured":"Leonard R, Noonan K, Horsfall D, et al. Death Literacy Index: A report on its development and implementation. Western Sydney University, 2020."},{"key":"e_1_3_9_8_2","volume-title":"Evaluation of the Greater Choice for At Home Palliative Care Program \u2013 Midpoint Report","author":"Australian Government Department of Health Disability and Ageing","year":"2025","unstructured":"Australian Government Department of Health Disability and Ageing. Evaluation of the Greater Choice for At Home Palliative Care Program \u2013 Midpoint Report. Australian Government Department of Health, Disability and Ageing, 2025."},{"key":"e_1_3_9_9_2","volume-title":"Singapore Death Literacy Index \u2013 A Population Study on End of Life","author":"Singapore Hospice Council & Temasek Polytechnic","year":"2025","unstructured":"Singapore Hospice Council & Temasek Polytechnic. Singapore Death Literacy Index \u2013 A Population Study on End of Life. Singapore Hospice Council, 2025."},{"key":"e_1_3_9_10_2","doi-asserted-by":"publisher","DOI":"10.1177\/1524839919858082"},{"key":"e_1_3_9_11_2","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12952"},{"key":"e_1_3_9_12_2","doi-asserted-by":"publisher","DOI":"10.4135\/9781473921290"},{"key":"e_1_3_9_13_2","doi-asserted-by":"publisher","DOI":"10.1136\/jech.2004.028662"},{"key":"e_1_3_9_14_2","doi-asserted-by":"publisher","DOI":"10.1080\/09650792.2017.1329092"},{"key":"e_1_3_9_15_2","volume-title":"The research impact handbook. St. John's Well","author":"Reed MS","year":"2016","unstructured":"Reed MS. The research impact handbook. St. John's Well. Fast Track Impact, 2016."},{"key":"e_1_3_9_16_2","doi-asserted-by":"publisher","DOI":"10.1080\/09650792.2017.1299025"},{"key":"e_1_3_9_17_2","doi-asserted-by":"publisher","DOI":"10.1177\/1090198119828795"},{"key":"e_1_3_9_18_2","doi-asserted-by":"publisher","DOI":"10.1177\/16094069261432750"},{"key":"e_1_3_9_19_2","unstructured":"Socialstyrelsen. Skyddad yrkestitel f\u00f6r undersk\u00f6terskor. https:\/\/www.socialstyrelsen.se\/skyddad-titel-for-underskoterskor\/ (2023)."},{"key":"e_1_3_9_20_2","doi-asserted-by":"publisher","DOI":"10.3109\/11038128.2015.1044907"},{"key":"e_1_3_9_21_2","volume-title":"Riktlinjer f\u00f6r handl\u00e4ggning inom socialtj\u00e4nstens \u00e4ldreomsorg","author":"\u00c4ldref\u00f6rvaltningen Stockholms Stad","year":"2020","unstructured":"\u00c4ldref\u00f6rvaltningen Stockholms Stad. Riktlinjer f\u00f6r handl\u00e4ggning inom socialtj\u00e4nstens \u00e4ldreomsorg. Stockholms stad, 2020. Report no. Dnr 3.1-268\/2020."},{"key":"e_1_3_9_22_2","volume-title":"Annual Report for Swedish Register of Palliative Care 2024 [\u00c5rsrapport f\u00f6r Svenska Palliativregistret 2024]","author":"Svenska palliativregistret","year":"2024","unstructured":"Svenska palliativregistret. Annual Report for Swedish Register of Palliative Care 2024 [\u00c5rsrapport f\u00f6r Svenska Palliativregistret 2024]. Svenska Palliativregistret, 2024."},{"key":"e_1_3_9_23_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jamda.2019.05.003"},{"key":"e_1_3_9_24_2","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0150686"},{"key":"e_1_3_9_25_2","doi-asserted-by":"publisher","DOI":"10.1177\/0269216316663507"},{"key":"e_1_3_9_26_2","doi-asserted-by":"publisher","DOI":"10.1017\/S0144686X10000905"},{"key":"e_1_3_9_27_2","doi-asserted-by":"publisher","DOI":"10.1177\/1403494817751329"},{"key":"e_1_3_9_28_2","doi-asserted-by":"publisher","DOI":"10.1177\/1049909119885899"},{"key":"e_1_3_9_29_2","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/gnaa012"},{"key":"e_1_3_9_30_2","first-page":"1","article-title":"Dissemination, Use and Impact of a Community-based, Conversational Advance Care Planning Intervention: Ripple Effects of the Swedish D\u00f6Bra cards","volume":"35","author":"Enesl\u00e4tt M","year":"2021","unstructured":"Enesl\u00e4tt M, Helgesson G, Tishelman C. Dissemination, Use and Impact of a Community-based, Conversational Advance Care Planning Intervention: Ripple Effects of the Swedish D\u00f6Bra cards. Palliative medicine 2021; 35: 1.","journal-title":"Palliative medicine"},{"key":"e_1_3_9_31_2","doi-asserted-by":"publisher","DOI":"10.1177\/02692163221079546"},{"key":"e_1_3_9_32_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1470-2045(17)30582-X"},{"key":"e_1_3_9_33_2","doi-asserted-by":"publisher","DOI":"10.1111\/ajag.12639"},{"key":"e_1_3_9_34_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12877-016-0179-4"},{"key":"e_1_3_9_35_2","doi-asserted-by":"publisher","DOI":"10.1017\/S0714980821000738"},{"key":"e_1_3_9_36_2","doi-asserted-by":"publisher","DOI":"10.1111\/opn.12295"},{"key":"e_1_3_9_37_2","first-page":"486","article-title":"Health care professionals\u2019 perspectives of advance care planning for people with dementia living in long-term care settings: A narrative review of the literature","volume":"16","author":"Beck E-R","year":"2017","unstructured":"Beck E-R, McIlfatrick S, Hasson F, et al. Health care professionals\u2019 perspectives of advance care planning for people with dementia living in long-term care settings: A narrative review of the literature. Dementia (London, England) 2017; 16: 486\u2013512. https:\/\/doi.org\/10.1177\/1471301215604997","journal-title":"Dementia (London, England)"},{"key":"e_1_3_9_38_2","doi-asserted-by":"publisher","DOI":"10.3390\/healthcare6020063"},{"key":"e_1_3_9_39_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jamda.2017.04.010"},{"key":"e_1_3_9_40_2","volume-title":"Advance care planning in aged care: a guide to support implementation in community and residential settings","author":"Batchelor F","year":"2018","unstructured":"Batchelor F, Haralambous B, Nolte L, et al. Advance care planning in aged care: a guide to support implementation in community and residential settings. Advance Care Planning Australia, 2018."},{"key":"e_1_3_9_41_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijnurstu.2016.12.003"},{"key":"e_1_3_9_42_2","first-page":"1","article-title":"Developing and using a structured, conversation-based intervention for clarifying values and preferences for end-of-life in the advance care planning-naive Swedish context: Action research within the the DoBra research program","volume":"46","author":"Tishelman C","year":"2019","unstructured":"Tishelman C, Eneslatt M, Menkin E, et al. Developing and using a structured, conversation-based intervention for clarifying values and preferences for end-of-life in the advance care planning-naive Swedish context: Action research within the the DoBra research program. Death Studies 2019; 46: 1\u201313. https:\/\/doi.org\/10.1080\/07481187.2019.1701145","journal-title":"Death Studies"},{"key":"e_1_3_9_43_2","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2006.9983"},{"key":"e_1_3_9_44_2","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/gnaa012"},{"key":"e_1_3_9_45_2","doi-asserted-by":"publisher","DOI":"10.1177\/10497323211012986"},{"key":"e_1_3_9_46_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12877-025-05916-7"},{"key":"e_1_3_9_47_2","unstructured":"Mikaelsson \u00c5 Eriksson LE Stenfors T et al. Staff drivers of action during implementation of proactive end-of-life conversations in care facilities for older people. Unpublished manuscript. Submitted."},{"key":"e_1_3_9_48_2","first-page":"1","article-title":"Samtal om livets slutskede: Hj\u00e4lp till dig som arbetar p\u00e5 s\u00e4rskilt boende f\u00f6r \u00e4ldre och kommer h\u00e5lla f\u00f6rberedande samtal","volume":"1","author":"Johansson T","year":"2021","unstructured":"Johansson T, Now R, Solesi P, et al. Samtal om livets slutskede: Hj\u00e4lp till dig som arbetar p\u00e5 s\u00e4rskilt boende f\u00f6r \u00e4ldre och kommer h\u00e5lla f\u00f6rberedande samtal. \u00c4ldref\u00f6rvaltningen, Stockholms stad [Elderly Services Department, City of Stockholm] 2021; 1: 1.","journal-title":"\u00c4ldref\u00f6rvaltningen, Stockholms stad [Elderly Services Department, City of Stockholm]"},{"key":"e_1_3_9_49_2","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0295141"},{"key":"e_1_3_9_50_2","doi-asserted-by":"publisher","DOI":"10.3389\/fpubh.2023.1140475"},{"key":"e_1_3_9_51_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12904-022-01032-0"},{"key":"e_1_3_9_52_2","doi-asserted-by":"publisher","DOI":"10.1177\/00302228221144672"},{"key":"e_1_3_9_53_2","doi-asserted-by":"publisher","DOI":"10.1177\/26323524241274806"},{"key":"e_1_3_9_54_2","doi-asserted-by":"publisher","DOI":"10.1007\/BF01593882"},{"key":"e_1_3_9_55_2","first-page":"2061","article-title":"Using Framework Analysis in Applied Qualitative Research","volume":"26","author":"Goldsmith L","year":"2021","unstructured":"Goldsmith L. Using Framework Analysis in Applied Qualitative Research. Qualitative report 2021; 26: 2061\u20132076. https:\/\/doi.org\/10.46743\/2160-3715\/2021.5011","journal-title":"Qualitative report"},{"key":"e_1_3_9_56_2","doi-asserted-by":"publisher","DOI":"10.1177\/26323524221095107"},{"key":"e_1_3_9_57_2","unstructured":"Partby L. Att hitta in i samtalet [Finding the way into the conversation]. Stockholm Gerontology Research Center. Sweden2023."},{"key":"e_1_3_9_58_2","volume-title":"Dokument\u00e4rfilm som verktyg f\u00f6r upplevelsebaserat l\u00e4rande om samtal om livets sista tid i \u00e4ldreomsorg [Documentary Film as a Tool for Experiential Learning about End-of-Life Conversations in Aged Care]","author":"Goliath I","year":"2024","unstructured":"Goliath I, Wik A. Dokument\u00e4rfilm som verktyg f\u00f6r upplevelsebaserat l\u00e4rande om samtal om livets sista tid i \u00e4ldreomsorg [Documentary Film as a Tool for Experiential Learning about End-of-Life Conversations in Aged Care]. Stockholm Gerontology Research Center, 2024."},{"key":"e_1_3_9_59_2","first-page":"COV1","article-title":"Demystifying Research Paradigms: Navigating Ontology, Epistemology, and Axiology in Research","volume":"29","author":"Pretorius L","year":"2024","unstructured":"Pretorius L. Demystifying Research Paradigms: Navigating Ontology, Epistemology, and Axiology in Research. Qualitative report 2024; 29: COV1\u2013COV2715. https:\/\/doi.org\/10.46743\/2160-3715\/2024.7632","journal-title":"Qualitative report"},{"key":"e_1_3_9_60_2","doi-asserted-by":"publisher","DOI":"10.1093\/acprof:oso\/9780199644155.003.0004"},{"key":"e_1_3_9_61_2","doi-asserted-by":"publisher","DOI":"10.1177\/00302228251319478"},{"key":"e_1_3_9_62_2","doi-asserted-by":"publisher","DOI":"10.1111\/inr.70036"},{"key":"e_1_3_9_63_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.edurev.2008.01.003"},{"key":"e_1_3_9_64_2","doi-asserted-by":"publisher","DOI":"10.1111\/ijsw.12621"},{"key":"e_1_3_9_65_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2015.02.012"},{"key":"e_1_3_9_66_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2018.11.003"},{"key":"e_1_3_9_67_2","doi-asserted-by":"publisher","DOI":"10.1177\/10499091211005735"},{"key":"e_1_3_9_68_2","doi-asserted-by":"publisher","DOI":"10.1017\/S1478951520000723"}],"container-title":["Palliative Care and Social Practice"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/26323524261488419","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/26323524261488419","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/26323524261488419","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,13]],"date-time":"2026-09-13T16:17:16Z","timestamp":1789316236000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/26323524261488419"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,9]]},"references-count":67,"alternative-id":["10.1177\/26323524261488419"],"URL":"https:\/\/doi.org\/10.1177\/26323524261488419","relation":{},"ISSN":["2632-3524","2632-3524"],"issn-type":[{"value":"2632-3524","type":"print"},{"value":"2632-3524","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,9]]},"article-number":"26323524261488419"}}