{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T20:51:37Z","timestamp":1781643097693,"version":"3.54.5"},"reference-count":25,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2026,3,13]],"date-time":"2026-03-13T00:00:00Z","timestamp":1773360000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,4,9]],"date-time":"2026-04-09T00:00:00Z","timestamp":1775692800000},"content-version":"vor","delay-in-days":27,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Klinikum der Universit\u00e4t M\u00fcnchen"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Palliat Care"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>There are approximately 1.8\u00a0million people living with dementia in Germany, of whom many present with a wide range of symptoms and needs. The assessment of these symptoms is often challenging for nursing staff in long-term care settings. The dementia-specific version of the Integrated Palliative Outcome Scale (IPOS-Dem) can support this assessment by enabling the timely identification of the needs of people living with dementia. To facilitate the use of IPOS-Dem, a user-friendly manual is required. The aim of this study is therefore to develop information material for assessing palliative care needs among people living with dementia through an iterative and participatory process tailored to professional caregivers, and to explore the content requirements of these materials from the caregivers\u2019 perspective.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A multi-stage qualitative study involving a Patient and Public Involvement (PPI) group and a focus group with professionals was conducted. The manual was developed through an iterative and participatory process, which included revision based on input from the PPI group and the validation of the final version in a structured focus group discussion. The data was analyzed using Mayring\u2019s qualitative content analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The PPI group consisted of three, the focus group of seven people (median age\u2009=\u200951 years; median work experience\u2009=\u200929 years). Feedback from the discussions encompassed themes that were incorporated into the revised version of the manual, including reducing continuous text, adding graphical elements to improve readability, revising the layout, and refining the case example to describe observable differences in a more concrete way. Linguistic revisions, such as simplifying and shortening phrasing, as well as making the manual more engaging and motivating, were also implemented. The manual was rated by the participating professionals as helpful and practice-oriented, supporting the systematic assessment of palliative care needs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The participatory and iterative development process ensured that the manual reflects the practical needs and perspectives of professional caregivers, thereby enhancing its relevance and acceptance in dementia care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s12904-026-02066-4","type":"journal-article","created":{"date-parts":[[2026,3,13]],"date-time":"2026-03-13T06:03:20Z","timestamp":1773381800000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Developing information material to support the assessment of palliative care needs in dementia: a qualitative participatory approach"],"prefix":"10.1186","volume":"25","author":[{"given":"Daniela","family":"Gesell","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julia","family":"Wikert","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katerina","family":"Hriskova","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Arianita","family":"Veliqi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudia","family":"Bausewein","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,3,13]]},"reference":[{"key":"2066_CR1","unstructured":"Demenz-Wissen. [https:\/\/www.deutsche-alzheimer.de\/demenz-wissen]"},{"key":"2066_CR2","doi-asserted-by":"crossref","unstructured":"Brijoux T, Zank S. Auswirkungen kognitiver Einschr\u00e4nkungen (Demenz) auf Lebensqualit\u00e4t und Versorgung. In: Hohes Alter in Deutschland. edn. Edited by Kaspar R, Simonson J, Tesch-R\u00f6mer C, Wagner M, Zank S. Berlin, Heidelberg: Springer Berlin Heidelberg; 2023: 173\u2013195.","DOI":"10.1007\/978-3-662-66630-2_8"},{"issue":"16","key":"2066_CR3","doi-asserted-by":"publisher","first-page":"1529","DOI":"10.1056\/NEJMoa0902234","volume":"361","author":"SL Mitchell","year":"2009","unstructured":"Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, Volicer L, Givens JL, Hamel MB. The Clinical Course of Advanced Dementia. N Engl J Med. 2009;361(16):1529\u201338.","journal-title":"N Engl J Med"},{"issue":"3","key":"2066_CR4","doi-asserted-by":"publisher","first-page":"212","DOI":"10.1192\/bjp.bp.108.049619","volume":"194","author":"GM Savva","year":"2009","unstructured":"Savva GM, Zaccai J, Matthews FE, Davidson JE, McKeith I, Brayne C. Prevalence, correlates and course of behavioural and psychological symptoms of dementia in the population. Br J Psychiatry. 2009;194(3):212\u20139.","journal-title":"Br J Psychiatry"},{"issue":"10452","key":"2066_CR5","doi-asserted-by":"publisher","first-page":"572","DOI":"10.1016\/S0140-6736(24)01296-0","volume":"404","author":"G Livingston","year":"2024","unstructured":"Livingston G, Huntley J, Liu KY, Costafreda SG, Selb\u00e6k G, Alladi S, Ames D, Banerjee S, Burns A, Brayne C, et al. Dementia prevention, intervention, and care: 2024 report of the standing Commission. Lancet. 2024;404(10452):572\u2013628.","journal-title":"Lancet"},{"key":"2066_CR6","doi-asserted-by":"publisher","unstructured":"Hockley A, Moll D, Littlejohns J, Collett Z, Henshall C. Access to communication support for community-dwelling people with dementia: A mixed methods study exploring local perspectives within the United Kingdom context. Age Ageing. 2025;54(6):afaf150. https:\/\/doi.org\/10.1093\/ageing\/afaf150. PMID: 40459345; PMCID: PMC12131240.","DOI":"10.1093\/ageing\/afaf150"},{"issue":"7","key":"2066_CR7","doi-asserted-by":"publisher","first-page":"651","DOI":"10.1177\/0269216316675096","volume":"31","author":"C Ellis-Smith","year":"2017","unstructured":"Ellis-Smith C, Evans CJ, Murtagh FE, Henson LA, Firth AM, Higginson IJ, Daveson BA. Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia. Palliat Med. 2017;31(7):651\u201360.","journal-title":"Palliat Med"},{"issue":"8","key":"2066_CR8","doi-asserted-by":"publisher","first-page":"1045","DOI":"10.1177\/0269216319854264","volume":"33","author":"FE Murtagh","year":"2019","unstructured":"Murtagh FE, Ramsenthaler C, Firth A, Groeneveld EI, Lovell N, Simon ST, Denzel J, Guo P, Bernhardt F, Schildmann E. A brief, patient-and proxy-reported outcome measure in advanced illness: validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS). Palliat Med. 2019;33(8):1045\u201357.","journal-title":"Palliat Med"},{"issue":"5","key":"2066_CR9","doi-asserted-by":"publisher","first-page":"962","DOI":"10.1177\/02692163211004403","volume":"35","author":"F Hodiamont","year":"2021","unstructured":"Hodiamont F, Hock H, Ellis-Smith C, Evans C, de Wolf-Linder S, J\u00fcnger S, Diehl-Schmid J, Burner-Fritsch I, Bausewein C. Culture in the spotlight-cultural adaptation and content validity of the integrated palliative care outcome scale for dementia: A cognitive interview study. Palliat Med. 2021;35(5):962\u201371.","journal-title":"Palliat Med"},{"issue":"6","key":"2066_CR10","first-page":"1621","volume":"15","author":"SC Nassar-McMillan","year":"2010","unstructured":"Nassar-McMillan SC, Wyer M, Oliver-Hoyo M, Ryder-Burge A. Using focus groups in preliminary instrument development: Expected and unexpected lessons learned. Qualitative Rep. 2010;15(6):1621.","journal-title":"Qualitative Rep"},{"issue":"6","key":"2066_CR11","doi-asserted-by":"publisher","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","volume":"19","author":"A Tong","year":"2007","unstructured":"Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349\u201357.","journal-title":"Int J Qual Health Care"},{"key":"2066_CR12","doi-asserted-by":"publisher","first-page":"j3453","DOI":"10.1136\/bmj.j3453","volume":"358","author":"S Staniszewska","year":"2017","unstructured":"Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, Altman DG, Moher D, Barber R, Denegri S, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ. 2017;358:j3453.","journal-title":"BMJ"},{"key":"2066_CR13","doi-asserted-by":"publisher","first-page":"65","DOI":"10.1016\/j.zefq.2021.12.004","volume":"168","author":"L Hoffmann","year":"2022","unstructured":"Hoffmann L, Seegers F, Stephan A. Durchf\u00fchrung und Berichterstattung von Fokusgruppen in der Gesundheits- und Pflegewissenschaft: ein Scoping Review. Zeitschrift f\u00fcr Evidenz Fortbildung und Qualit\u00e4t im Gesundheitswesen. 2022;168:65\u201374.","journal-title":"Zeitschrift f\u00fcr Evidenz Fortbildung und Qualit\u00e4t im Gesundheitswesen"},{"issue":"6","key":"2066_CR14","first-page":"20","volume":"18","author":"M Daniel","year":"2013","unstructured":"Daniel M, Breuer J, Mayer H. Focus Groups. ProCare. 2013;18(6):20\u20133.","journal-title":"ProCare"},{"key":"2066_CR15","unstructured":"Palliative, Vitalparameter. [https:\/\/www.lmu-klinikum.de\/palliativmedizin\/palliative-vitalparameter\/be1563e7e9286611]"},{"key":"2066_CR16","doi-asserted-by":"crossref","unstructured":"Heaton J. Reworking Qualitative Data. SAGE; 2004.","DOI":"10.4135\/9781849209878"},{"key":"2066_CR17","volume-title":"Die Qualit\u00e4t qualitativer Daten: Manual f\u00fcr die Durchf\u00fchrung qualitativer Interviews","author":"C Helfferich","year":"2005","unstructured":"Helfferich C. Die Qualit\u00e4t qualitativer Daten: Manual f\u00fcr die Durchf\u00fchrung qualitativer Interviews. Wiesbaden: VS Verlag f\u00fcr Sozialwissenschaften; 2005."},{"key":"2066_CR18","unstructured":"Mayring P. Qualitative Content Analysis: Demarcation, Varieties, Developments [30 paragraphs]. Forum Qualitative Sozialforschung \/ Forum: Qualitative Social Research. 2019;20(3):16. http:\/\/dx.doi.org\/10.17169\/fqs-20.3.3343."},{"issue":"2","key":"2066_CR19","doi-asserted-by":"publisher","first-page":"450","DOI":"10.1002\/nop2.1369","volume":"10","author":"I Salma","year":"2023","unstructured":"Salma I, Waelli M. Mapping research findings on change implementation in nursing practice: A scoping literature review. Nurs Open. 2023;10(2):450\u201368.","journal-title":"Nurs Open"},{"issue":"1","key":"2066_CR20","doi-asserted-by":"publisher","first-page":"2552","DOI":"10.1186\/s12889-025-22938-3","volume":"25","author":"PAI Vandenbulcke","year":"2025","unstructured":"Vandenbulcke PAI, de Almeida Mello J, Piccart FMP, De Lepeleire J, Schoebrechts E, Declercq A, Declerck D, Duyck J. Implementation of the OHS-interRAI for regular oral health assessments by non-dental caregivers: focus group study using a SWOT analysis. BMC Public Health. 2025;25(1):2552.","journal-title":"BMC Public Health"},{"issue":"1","key":"2066_CR21","doi-asserted-by":"publisher","first-page":"1283","DOI":"10.1186\/s12913-021-07282-7","volume":"21","author":"T-LD Steinskog","year":"2021","unstructured":"Steinskog T-LD, Tranv\u00e5g O, Ciliska D, Nortvedt MW, Graverholt B. Integrated knowledge translation in nursing homes: exploring the experiences of practice development nurses. BMC Health Serv Res. 2021;21(1):1283.","journal-title":"BMC Health Serv Res"},{"issue":"1","key":"2066_CR22","doi-asserted-by":"publisher","first-page":"1019","DOI":"10.1186\/s12909-024-06014-9","volume":"24","author":"BH Larsen","year":"2024","unstructured":"Larsen BH, Dyrstad DN, Falkenberg HK, Dieckmann P, Storm M. Training healthcare professionals in assessment of health needs in older adults living at home: a scoping review. BMC Med Educ. 2024;24(1):1019.","journal-title":"BMC Med Educ"},{"issue":"3","key":"2066_CR23","doi-asserted-by":"publisher","first-page":"197","DOI":"10.1177\/0269216313493685","volume":"28","author":"JT van der Steen","year":"2014","unstructured":"van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, Francke AL, J\u00fcnger S, Gove D, Firth P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014;28(3):197\u2013209.","journal-title":"Palliat Med"},{"issue":"1","key":"2066_CR24","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/s12904-023-01329-8","volume":"23","author":"E Lehmann-Emele","year":"2024","unstructured":"Lehmann-Emele E, Jansky M, Clapham S, de Wolf-Linder S, Bausewein C, Hodiamont F. Using normalization process theory to evaluate the use of patient-centred outcome measures in specialist palliative home care-a qualitative interview study. BMC Palliat Care. 2024;23(1):1.","journal-title":"BMC Palliat Care"},{"key":"2066_CR25","unstructured":"Integrated POS. (IPOS) for Dementia and Translations [https:\/\/pos-pal.org\/maix\/ipos-dem.php]"}],"container-title":["BMC Palliative Care"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12904-026-02066-4","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12904-026-02066-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12904-026-02066-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T19:53:38Z","timestamp":1781639618000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1186\/s12904-026-02066-4"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,3,13]]},"references-count":25,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,12]]}},"alternative-id":["2066"],"URL":"https:\/\/doi.org\/10.1186\/s12904-026-02066-4","relation":{},"ISSN":["1472-684X"],"issn-type":[{"value":"1472-684X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,3,13]]},"assertion":[{"value":"4 December 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"9 March 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"13 March 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"All methods were performed in accordance with the relevant guidelines and regulations (Declaration of Helsinki). The study was approved by the local research ethics committee of Ludwig-Maximilians-University Munich (23\u20130966). Written informed consent was obtained from the participants.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"90"}}