{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T02:46:16Z","timestamp":1792032376841,"version":"4.4.0"},"reference-count":36,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,10,8]],"date-time":"2024-10-08T00:00:00Z","timestamp":1728345600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,10,8]],"date-time":"2024-10-08T00:00:00Z","timestamp":1728345600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["NIHR128829"],"award-info":[{"award-number":["NIHR128829"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Res Involv Engagem"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>We conducted an NIHR-funded evidence synthesis project, reviewing evidence relating to interventions for perceptual disorders following stroke. This related paper describes how people with lived experience of stroke-related perceptual disorders contributed to and influenced the project, and identifies lessons for future review projects.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We planned our patient and public involvement and engagement (PPIE) activities within a study protocol, described according to the domains of the ACTIVE framework; these were founded on principles for good practice in PPIE. Activities occurred across the lifespan of the project, consisting primarily of group discussions and voting to determine if there was consensus. To assess impact and individual experiences, we sought feedback using an evaluation form after each discussion, and conducted an online meeting at the end of the project to allow further reflection.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>We recruited five people to a Lived Experience Group, including two stroke survivors and three carers. Members attended one face-to-face meeting during the development of the review. Subsequent activities were all held online due to the COVID-19 pandemic; with six online meetings, plus email interactions. Positive impacts of the Lived Experience Group on the reviews included clear definitions of key terms, selection of outcome measures, agreement on implications of review findings, and identification of research recommendations. Key challenges identified related to the complexity of the topic and challenges in the use of new online technology as a consequence of the COVID-pandemic.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>A number of lessons were learned during this project. Specific recommendations for future PPIE are to ensure that those involved have an opportunity to get to know one another, and to provide optional sessions to increase familiarity with online meeting software, clear explanations of the purpose of involvement and specific feedback after each activity. These lessons should be considered when planning the PPIE within future reviews.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s40900-024-00637-4","type":"journal-article","created":{"date-parts":[[2024,10,8]],"date-time":"2024-10-08T16:16:16Z","timestamp":1728404176000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["Patient and public involvement in an evidence synthesis project: description of and reflection on involvement"],"prefix":"10.1186","volume":"10","author":[{"given":"Katie","family":"Thomson","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alex","family":"Todhunter-Brown","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marian C.","family":"Brady","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pauline","family":"Campbell","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Liam","family":"Dorris","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan M.","family":"Hunter","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Donald J.","family":"Nicolson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine","family":"Hazelton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,10,8]]},"reference":[{"key":"637_CR1","unstructured":"Christine, Hazelton et al. Interventions for perceptual disorders after stroke: a scoping review, Cochrane systematic review and priority setting project (PIONEER). National Institute of Health and Care Research; In."},{"issue":"11","key":"637_CR2","doi-asserted-by":"publisher","first-page":"2602","DOI":"10.1161\/hs1101.098154","volume":"32","author":"L Mercier","year":"2001","unstructured":"Mercier L, Audet T, H\u00e9bert R, Rochette A, Dubois MF. Impact of motor, cognitive, and perceptual disorders on ability to perform activities of daily living after stroke. Stroke. 2001;32(11):2602\u20138.","journal-title":"Stroke"},{"issue":"4","key":"637_CR3","doi-asserted-by":"publisher","first-page":"301","DOI":"10.1177\/026921559100500406","volume":"5","author":"J Edmans","year":"1991","unstructured":"Edmans J, Towle D, Lincoln N. The recovery of perceptual problems after stroke and the impact on daily life. Clin Rehabil. 1991;5(4):301\u20139.","journal-title":"Clin Rehabil"},{"issue":"9","key":"637_CR4","doi-asserted-by":"publisher","first-page":"e00778","DOI":"10.1002\/brb3.778","volume":"7","author":"FJ Rowe","year":"2017","unstructured":"Rowe FJ. Stroke survivors\u2019 views and experiences on impact of visual impairment. Brain Behav. 2017;7(9):e00778.","journal-title":"Brain Behav"},{"issue":"5","key":"637_CR5","doi-asserted-by":"publisher","first-page":"1772","DOI":"10.1161\/STROKEAHA.121.035671","volume":"53","author":"C Hazelton","year":"2022","unstructured":"Hazelton C, McGill K, Campbell P, Todhunter-Brown A, Thomson K, Nicolson DJ, et al. Perceptual disorders after Stroke: a scoping review of interventions. Stroke. 2022;53(5):1772\u201387.","journal-title":"Stroke"},{"key":"637_CR6","doi-asserted-by":"crossref","unstructured":"Aquino MRJ (Ryc), Mullis R, Moore C, Kreit E, Lim L, McKevitt C It\u2019s Difficult, et al. editors. There\u2019s No Formula: Qualitative Study of Stroke Related Communication Between Primary and Secondary Healthcare Professionals. Int J Integr Care. 2020.","DOI":"10.5334\/ijic.5465"},{"key":"637_CR7","unstructured":"Surya N, Someshwar H. Rehabilitation in perceptual disorders in stroke patients. SVOA. 2020;1\u20139."},{"issue":"1","key":"637_CR8","doi-asserted-by":"publisher","first-page":"302","DOI":"10.1186\/s12913-020-05176-8","volume":"20","author":"HK Falkenberg","year":"2020","unstructured":"Falkenberg HK, Mathisen TS, Ormstad H, Eilertsen G. Invisible\u2019 visual impairments. A qualitative study of stroke survivors` experience of vision symptoms, health services and impact of visual impairments. BMC Health Serv Res. 2020;20(1):302.","journal-title":"BMC Health Serv Res"},{"key":"637_CR9","doi-asserted-by":"publisher","unstructured":"Hazelton C, Thomson K, Todhunter-Brown A, Campbell P, Chung CS, Dorris L et al. Interventions for perceptual disorders following stroke. 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WHO. 2010 [cited 2022 Jun 9]. https:\/\/apps.who.int\/classifications\/icfbrowser\/"},{"key":"637_CR35","unstructured":"MuSE Consortium. 2023. https:\/\/methods.cochrane.org\/equity\/projects\/multi-stakeholder-engagement-muse"},{"key":"637_CR36","unstructured":"Cochrane Methods. Launch of the Co-Production Methods Group. 2024 [cited 2024 Jan 8]. https:\/\/methods.cochrane.org\/co-production\/news\/launch-co-production-methods-group"}],"container-title":["Research Involvement and Engagement"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-024-00637-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s40900-024-00637-4\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-024-00637-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,10,8]],"date-time":"2024-10-08T16:18:05Z","timestamp":1728404285000},"score":1,"resource":{"primary":{"URL":"https:\/\/researchinvolvement.biomedcentral.com\/articles\/10.1186\/s40900-024-00637-4"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,10,8]]},"references-count":36,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["637"],"URL":"https:\/\/doi.org\/10.1186\/s40900-024-00637-4","relation":{},"ISSN":["2056-7529"],"issn-type":[{"value":"2056-7529","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,10,8]]},"assertion":[{"value":"6 June 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"13 September 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"8 October 2024","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Ethical approval for PPI activity was provided by Glasgow Caledonian University\u2019s School of Health and Life Sciences Nursing Department Research Ethics Committee granted approval (HLS\/NCH\/19\/021). Members of the Lived Experience Group gave written consent for the recording and reporting of anonymised data.","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":"KT has declared an honorarium and travel expenses for the Occupational Therapy Show, consultancy fees from NHS Fife and a Global Challenges Networking Grant.ATB is co-convener of the Cochrane Co-production Methods Group, and a co-investigator on a CIHR-funded project focussed on engagement in healthcare systematic reviews.MB has declared grant funding from the Chief Scientist Office and the Health & Social Care Delivery Research (NIHR132895) programme. PC has declared funding from NIHR (NIHR128829; NIHR128470; NIHR132895; NIHR153425) and Chief Scientist Office (Scotland; HIPS\/21\/03LD and SH declare no competing interestsDJN has declared being employed for an SME Medical Device Company (Metix Medical) for two years (May 2019-July 2021) as the Medical Science Liaison winning an Innovate UK award for the Business-led innovation in response to global disruption (de minimis) funding application stream. This evaluated the utility of a prototype high acuity monitoring device. He was the grant holder, project lead and drew a salary from this project. He is also an employee of Healthcare Improvement Scotland since July 2021 and is attached to the SIGN team. In 2018 he received travel expenses to present at the Association for Borderlands Studies World Conference.CH has declared personal funding from the Stroke Association UK, via a non-clinical Lectureship (SA L-NC 20\\100003) and grant funding from NIHR Research for Patient Benefit programme (PB-PG-0418-20040), and Fight for Sight\/Stroke Association.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"102"}}