{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,19]],"date-time":"2026-10-19T18:39:21Z","timestamp":1792435161095,"version":"4.5.0"},"reference-count":82,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2026,9,7]],"date-time":"2026-09-07T00:00:00Z","timestamp":1788739200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,9,7]],"date-time":"2026-09-07T00:00:00Z","timestamp":1788739200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2026,10]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Patient and Public Involvement and Engagement (PPIE) can enhance the relevance, acceptability and quality of research; however, its meaningful implementation in dementia research remains insufficiently understood.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>(1) To identify methodological procedures for involving people with dementia (PwD) across the research lifecycle, and (2) to explore how members of a dementia PPIE group experience collaboration, contribution, and evaluation of their involvement.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This mono\u2010method, multi\u2010strand qualitative study combined (1) a meta\u2010synthesis of qualitative primary studies reporting explicit PPIE with PwD and (2) semi\u2010structured interviews with members of a PPIE group. Both strands were analysed using qualitative thematic analysis. Findings were integrated through a crosswalk table and narrative synthesis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The meta\u2010synthesis (33 studies) identified sequential, interrelated methodological conditions for PPIE with PwD across four themes: (1) access and recruitment, through trusted organisations and existing networks; (2) facilitation and support, using adapted communication, flexible pacing, practical aids, and sustained researcher facilitation; (3) forms of involvement, from consultation to co\u2010interviewing, co\u2010analysis, co\u2010authorship, and dissemination; and (4) evaluation of PPIE, which was inconsistently reported and rarely explicit about decision\u2010making impact. Qualitative interviews with 11 PPIE group members generated four experiential themes: (1) group\u2010related aspects (trust, appreciation, PwD representation), (2) structural conditions (organisation, preparation, continuity), (3) communication (clarity, accessibility, feedback), and (4) the handling and impact of contributions. Across strands, findings demonstrated strong convergence: methodological practices identified in the meta\u2010synthesis directly aligned with conditions under which participants experienced involvement as meaningful. Conversely, gaps in reporting and evaluation identified in the literature reflected participants\u2019 concerns about limited visibility of impact.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Effective PPIE with PwD requires sustained investment in relationship\u2010building, structured processes, accessible communication and continuous feedback to enable meaningful and inclusive collaboration. By integrating meta\u2010synthesis and experiential data, this study identified psychological safety, relational continuity and the visibility of influence as key in shaping meaningful involvement across research contexts.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient or Public Contribution<\/jats:title>\n                    <jats:p>Although people with dementia were not involved as research partners in study conception and design, the study sought to examine and incorporate lived\u2010experience perspectives through the included literature, qualitative interviews and participant validation workshop. This limitation is acknowledged and should be addressed through earlier involvement in future research.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70864","type":"journal-article","created":{"date-parts":[[2026,9,7]],"date-time":"2026-09-07T10:59:09Z","timestamp":1788778749000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Involving People With Dementia in Research: Contributions, Barriers and Evaluation From a Meta\u2010Synthesis and Qualitative Interview Study"],"prefix":"10.1111","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0009-0000-4798-7429","authenticated-orcid":false,"given":"J\u00f6rg","family":"Meisser","sequence":"first","affiliation":[{"name":"Department of Health Sciences Institute of Nursing, ZHAW Zurich University of Applied Sciences Winterthur Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3421-2418","authenticated-orcid":false,"given":"Susanne","family":"de Wolf\u2010Linder","sequence":"additional","affiliation":[{"name":"Department of Health Sciences Institute of Nursing, ZHAW Zurich University of Applied Sciences Winterthur Switzerland"},{"name":"Wolfson Palliative Care Research Centre Allam Medical Building, Hull York Medical School, University of Hull Kingston\u2010upon\u2010Hull UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9996-1818","authenticated-orcid":false,"given":"Christina","family":"Ramsenthaler","sequence":"additional","affiliation":[{"name":"Department of Health Sciences Institute of Nursing, ZHAW Zurich University of Applied Sciences Winterthur Switzerland"},{"name":"Wolfson Palliative Care Research Centre Allam Medical Building, Hull York Medical School, University of Hull Kingston\u2010upon\u2010Hull UK"},{"name":"Cicely Saunders Institute of Palliative Care Research Policy and Rehabilitation, King's College London London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,9,7]]},"reference":[{"key":"e_1_2_13_2_1","unstructured":"National Institute for Health and Care Research (NIHR). \u201cBriefing Notes for Researchers \u2013 Public Involvement in NHS Health and Social Care Research \u201d2024 accessed January 30 2026 https:\/\/www.nihr.ac.uk\/briefing-notes-researchers-public-involvement-nhs-health-and-social-care-research."},{"key":"e_1_2_13_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/s40271-014-0065-0"},{"key":"e_1_2_13_4_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12877-024-04877-7"},{"key":"e_1_2_13_5_1","unstructured":"National Institute for Health and Care Research (NIHR). \u201cUK Standards for Public Involvement \u201d2019 accessed January 30 2026 https:\/\/sites.google.com\/nihr.ac.uk\/pi-standards\/home."},{"key":"e_1_2_13_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/hsc.13111"},{"key":"e_1_2_13_7_1","unstructured":"Swiss Clinical Trial Organisation (SCTO). \u201c[Patient and Public Involvement] \u201d2025 accessed January30 2026 https:\/\/www.scto.ch\/de\/patient-and-public-involvement.html."},{"key":"e_1_2_13_8_1","unstructured":"Swiss National Science Foundation (SNSF). \u201cInvestigator Initiated Clinical Trials (IICT) \u201d2025 accessed January 30 2026 https:\/\/www.snf.ch\/en\/hyaJhBlfsmd618fO\/funding\/programmes\/iict."},{"key":"e_1_2_13_9_1","unstructured":"Swiss PPIE Network. \u201c[Swiss PPIE Network: Founding] \u201d2025 https:\/\/www.ppienet.ch\/verein\/(accessed 30 January 2026)."},{"key":"e_1_2_13_10_1","doi-asserted-by":"publisher","DOI":"10.3389\/fneur.2022.1031831"},{"key":"e_1_2_13_11_1","doi-asserted-by":"publisher","DOI":"10.1080\/13607863.2017.1317334"},{"key":"e_1_2_13_12_1","unstructured":"World Health Organization (WHO). \u201cDementia \u201d2025 accessed January 30 2026 https:\/\/www.who.int\/news-room\/fact-sheets\/detail\/dementia."},{"key":"e_1_2_13_13_1","doi-asserted-by":"publisher","DOI":"10.2196\/48292"},{"key":"e_1_2_13_14_1","doi-asserted-by":"publisher","DOI":"10.1177\/14713012211042466"},{"key":"e_1_2_13_15_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12877-019-1217-9"},{"key":"e_1_2_13_16_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301218789292"},{"key":"e_1_2_13_17_1","doi-asserted-by":"publisher","DOI":"10.1097\/YCO.0000000000000548"},{"key":"e_1_2_13_18_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-023-00424-7"},{"key":"e_1_2_13_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.14012"},{"key":"e_1_2_13_20_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.70250"},{"key":"e_1_2_13_21_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12888"},{"key":"e_1_2_13_22_1","unstructured":"Dementia Engagement and Empowerment Project (DEEP). \u201cThe DEEP\u2010Ethics Gold Standards for Dementia Research \u201d2020 https:\/\/dementiaenquirers.org.uk\/wp-content\/uploads\/2020\/12\/9737a_deep-ethics-gold-standards-for-dr-booklet_v4.pdf(accessed 30 January 2026)."},{"key":"e_1_2_13_23_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.j3453"},{"key":"e_1_2_13_24_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-023-00517-3"},{"key":"e_1_2_13_25_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-020-00239-w"},{"key":"e_1_2_13_26_1","doi-asserted-by":"publisher","DOI":"10.3389\/frdem.2024.1426019"},{"key":"e_1_2_13_27_1","volume-title":"Foundations of Mixed Methods Research: Integrating Quantitative and Qualitative Approaches in the Social and Behavioral Sciences","author":"Teddlie C.","year":"2010"},{"key":"e_1_2_13_28_1","volume-title":"Handbook for Synthesizing Qualitative Research","author":"Sandelowski M.","year":"2007"},{"key":"e_1_2_13_29_1","doi-asserted-by":"publisher","DOI":"10.1002\/nur.20362"},{"key":"e_1_2_13_30_1","doi-asserted-by":"publisher","DOI":"10.1002\/1098-240x(200008)23:4<334::aid-nur9>3.0.co;2-g"},{"key":"e_1_2_13_31_1","doi-asserted-by":"publisher","DOI":"10.1111\/cobi.12326"},{"key":"e_1_2_13_32_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.n71"},{"key":"e_1_2_13_33_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"e_1_2_13_34_1","doi-asserted-by":"crossref","unstructured":"E.Aromataris C.Lockwood K.Porritt B.Pilla andZ.Jordan the Joanna Briggs Institute (JBI). \u201cJBI Manual for Evidence Synthesis \u201d2024 accessed January 30 2026 https:\/\/doi.org\/10.46658\/JBIMES-24-01.","DOI":"10.46658\/JBIMES-24-01"},{"key":"e_1_2_13_35_1","doi-asserted-by":"publisher","DOI":"10.1111\/ajag.70030"},{"key":"e_1_2_13_36_1","doi-asserted-by":"publisher","DOI":"10.1080\/13607863.2011.596805"},{"key":"e_1_2_13_37_1","doi-asserted-by":"publisher","DOI":"10.5195\/jmla.2020.834"},{"key":"e_1_2_13_38_1","doi-asserted-by":"publisher","DOI":"10.1177\/0163278706293400"},{"key":"e_1_2_13_39_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732305284027"},{"key":"e_1_2_13_40_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732306294515"},{"key":"e_1_2_13_41_1","unstructured":"Elicit. \u201cElicit: The AI Research Assistant \u201d2025 https:\/\/elicit.com(accessed 30 January 2026)."},{"key":"e_1_2_13_42_1","unstructured":"Corporation for Digital Scholarship. \u201cZotero (7.0.32) [Software] \u201d2025 accessed January 30 2026 https:\/\/www.zotero.org\/."},{"key":"e_1_2_13_43_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13643-016-0384-4"},{"key":"e_1_2_13_44_1","doi-asserted-by":"publisher","DOI":"10.1080\/02671520701296189"},{"key":"e_1_2_13_45_1","unstructured":"VERBI Software. \u201cMAXQDA 24 [Software] \u201d2025 accessed January 30 2026 https:\/\/maxqda.com."},{"key":"e_1_2_13_46_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781036212940"},{"key":"e_1_2_13_47_1","volume-title":"Qualitative Research & Evaluation Methods: Integrating Theory and Practice","author":"Patton M. Q.","year":"2015"},{"key":"e_1_2_13_48_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-658-27602-7_3"},{"key":"e_1_2_13_49_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2024.21972"},{"key":"e_1_2_13_50_1","doi-asserted-by":"publisher","DOI":"10.1177\/14713012221106816"},{"key":"e_1_2_13_51_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-024-00574-2"},{"issue":"3","key":"e_1_2_13_52_1","first-page":"3","article-title":"Removing the \u2018Gag\u2019: Involving People With Dementia in Research as Advisers and Participants","volume":"201","author":"Brooks J.","year":"2017","journal-title":"Social Research Practice"},{"key":"e_1_2_13_53_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13332"},{"key":"e_1_2_13_54_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732318774768"},{"key":"e_1_2_13_55_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13992"},{"key":"e_1_2_13_56_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-025-00678-3"},{"key":"e_1_2_13_57_1","doi-asserted-by":"publisher","DOI":"10.3389\/frdem.2024.1421556"},{"key":"e_1_2_13_58_1","doi-asserted-by":"publisher","DOI":"10.1080\/13645579.2020.1826648"},{"key":"e_1_2_13_59_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301221997281"},{"key":"e_1_2_13_60_1","doi-asserted-by":"publisher","DOI":"10.2196\/24483"},{"key":"e_1_2_13_61_1","doi-asserted-by":"publisher","DOI":"10.1177\/14713012241231916"},{"key":"e_1_2_13_62_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-023-00421-w"},{"key":"e_1_2_13_63_1","doi-asserted-by":"publisher","DOI":"10.1177\/14713012251333839"},{"key":"e_1_2_13_64_1","doi-asserted-by":"publisher","DOI":"10.1111\/1440-1630.12843"},{"key":"e_1_2_13_65_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301218789309"},{"key":"e_1_2_13_66_1","doi-asserted-by":"publisher","DOI":"10.1177\/1476750318787005"},{"key":"e_1_2_13_67_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-021-00297-8"},{"key":"e_1_2_13_68_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2020-039321"},{"key":"e_1_2_13_69_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13096"},{"key":"e_1_2_13_70_1","doi-asserted-by":"publisher","DOI":"10.1177\/14713012251325928"},{"key":"e_1_2_13_71_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12952"},{"key":"e_1_2_13_72_1","doi-asserted-by":"publisher","DOI":"10.1002\/gps.6014"},{"key":"e_1_2_13_73_1","doi-asserted-by":"publisher","DOI":"10.1111\/jgs.19269"},{"key":"e_1_2_13_74_1","doi-asserted-by":"publisher","DOI":"10.7748\/nr.2024.e1919"},{"key":"e_1_2_13_75_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-022-00359-5"},{"key":"e_1_2_13_76_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301217690904"},{"key":"e_1_2_13_77_1","doi-asserted-by":"publisher","DOI":"10.3109\/09638237.2011.651658"},{"key":"e_1_2_13_78_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301218820208"},{"key":"e_1_2_13_79_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12891"},{"key":"e_1_2_13_80_1","doi-asserted-by":"publisher","DOI":"10.1080\/17533015.2024.2408023"},{"key":"e_1_2_13_81_1","doi-asserted-by":"publisher","DOI":"10.1177\/14713012231190775"},{"key":"e_1_2_13_82_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301216642339"},{"key":"e_1_2_13_83_1","doi-asserted-by":"publisher","DOI":"10.1177\/14713012231205610"}],"container-title":["Health Expectations"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hex.70864","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/hex.70864","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hex.70864","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,19]],"date-time":"2026-10-19T17:48:00Z","timestamp":1792432080000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hex.70864"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,9,7]]},"references-count":82,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2026,10]]}},"alternative-id":["10.1111\/hex.70864"],"URL":"https:\/\/doi.org\/10.1111\/hex.70864","archive":["Portico"],"relation":{},"ISSN":["1369-6513","1369-7625"],"issn-type":[{"value":"1369-6513","type":"print"},{"value":"1369-7625","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,9,7]]},"assertion":[{"value":"2026-05-15","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-08-25","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-09-07","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e70864"}}