<strong>Meaningful engagement and involvement of people living with multiple long-term conditions and communities in health care research: A scoping review</strong>
Creators: name: Chopra, Mansi
name: Rajkhowa, Priyobrat
name: Ghosal, Shishirendu
name: Ikhile, Deborah
name: Rao, Niharika
name: Gupta, Mansi
name: Cassambai, Shabana
name: Srinivasapura Venkateshmurthy, Nikhil
name: Oli, Natalia
name: Thapa, Ambika
name: Highton, Patrick
name: Waring, Justin
name: Mohan, Sailesh
name: Vaidya, Abhinav
name: Singh, Kuldeep
name: Khunti, Kamlesh
name: Prabhakaran, Dorairaj
name: Arora, Monika
Publisher: name: figshare
Year: 2025
Subjects: classificationCode: 420603
subject: Health promotion

description: <b>Meaningful</b><b> </b><b>engagement</b><b> </b><b>and</b><b> </b><b>involvement</b><b> </b><b>of people</b><b> </b><b>living</b><b> </b><b>with</b><b> </b><b>multiple</b><b> </b><b>long-term conditions and communities in health care research: A scoping review</b><br><b><i>Authors:</i></b><b><i> </i></b><i>Mansi Chopra, Priyobrat Rajkhowa, Shishirendu Ghosal, Deborah Ikhile, Niharika Rao, Mansi Gupta, Shabana Cassambai, Nikhil Srinivasapura Venkateshmurthy, Natalia Oli, Ambika Thapa, Patrick Highton, Justin Waring, Sailesh Mohan, Abhinav Vaidya, Kuldeep Singh, Kamlesh Khunti, Dorairaj Prabhakaran, Monika Arora</i><br><b>Review</b><b> </b><b>question</b>: What are the widely used theories, models, and frameworks implemented to engage<sup>1</sup> and involve<sup>2</sup> people living with multiple long-term conditions (MLTCs) and<b> </b>community members globally?<b>Table 1. PCC framework for developing the research question.</b><b>Sl No</b><b>PCC Framework</b><b>Description</b>1Population (P)People living with multiple long-term conditions (MLTCs) and community members (According to the NIHR 37 conditions)2Concept (C)Engagement and Involvement3Context (C)Theories, models, and frameworks<br><b>Databases and search strategy</b>The search strategy for this study will involve comprehensive searches across several databases, including Embase, Scopus, Medline (PubMed), and CINAHL, to identify relevant peer-reviewed articles published in the English language, with no limitations on the publication date. The search will utilize Boolean operators (AND, OR, NOT) to combine key concepts and refine the results. For example, terms such as "community engagement," "long-term conditions," "theories," "models," "frameworks," and "multiple long-term conditions" will be combined using AND/OR operators to ensure comprehensive retrieval of relevant studies. Additionally, grey literature such as case studies, reports, theses, and book chapters will also be searched to include non-peer-reviewed sources that may provide valuable insights. The search strategy will be designed to capture a broad range of literature, ensuring that the most relevant and up-to-date studies and theoretical frameworks are included in the review.<br><b>Types</b><b> </b><b>of</b><b> </b><b>studies</b><b> </b><b>that</b><b> </b><b>will</b><b> </b><b>be</b><b> </b><b>included</b><b>Table 2: Inclusion and exclusion criteria</b><b>Criteria</b><b>Inclusion</b><b>Exclusion</b>Theories, Models, &amp; FrameworksStudies discussing widely used theories, models, or frameworks for engaging and involving people living with MLTCs and community membersStudies that do not discuss or mention any specific theories, models, or frameworks for engagement and involvement of people with MLTCsStudy designOriginal articles (both qualitative and quantitative). Relevant case studies, book chapters, and grey literature using any community engagement and involvement framework. Descriptive observational (e.g., case reports, case series, descriptive cross-sectional studies)Review articles, conference proceedings, editorial letters, correspondence, abstracts, author debates, summary articles, interviewsLanguageOnly English articles will be includedNon-English articlesYearNot LimitationNot LimitationGeographyNo LimitationNo Limitation<br><br><b>Screening and Data</b><b> </b><b>extraction</b><b> </b><b>(selection</b><b> </b><b>and</b><b> </b><b>coding)</b>All identified citations will be systematically compiled, uploaded into the Covidence platform, and any duplicates will be removed subsequent to the search. All retrieved titles and abstracts will undergo screening by a panel of four reviewers, who will also evaluate the papers for eligibility by employing the pre-defined inclusion criteria outlined in <b>Table 2</b>. In instances where the reviewers exhibit uncertainty regarding the study's eligibility for inclusion in the analysis, a fifth reviewer or an independent opinion may be solicited. The authors will reach a consensus on potentially relevant research through the collaborative screening process, and the full texts will be procured for review upon mutual agreement. The full texts of the studies deemed included after the initial stage of title and abstract screening will be independently examined by four reviewers. If the sources of evidence in the complete texts diverge from the established inclusion criteria, the reviewer will document and elucidate the rationale for exclusion. The studies that are included will subsequently undergo data extraction in accordance with the pre-defined data extraction framework presented in <b>Table 3</b>, and will be considered for data analysis. The final scoping review will encompass a comprehensive report detailing the search findings and the methodology for the included studies, which will be visually represented as a flowchart utilizing the PRISMA 2020 flow diagram.<br><b>Table 3: Data charting form</b><b>Data Item</b><b>Description</b>Author(s)List of authors involved in the study.TitleTitle of the study.Year of PublicationYear the study was published.Study Aim and ObjectivesThe primary aim and specific objectives of the study.Study Setting (Geographical/Contextual Details)Context of the study including geographical location (e.g., LMICs, HICs) or specific contextual information.Study PopulationThe population under study (e.g., people living with MLTCs, community members).Participant DemographicsDemographic characteristics (e.g., age, gender, socio-economic status, ethnicity).Baseline CharacteristicsKey characteristics of participants before the intervention (e.g., health conditions, medical history).CEI Models/Frameworks/Theories UsedSpecific community engagement and involvement models, frameworks, or theories discussed in the study.Constructs/Concepts/Dimensions of the Models/Frameworks/TheoriesKey concepts, constructs, or dimensions of the CEI models/frameworks/theories used in the study.Methods of Engagement/InvolvementDescription of the methods or strategies employed for engagement or involvement of people with MLTCs.Number and Conditions (Diseases) CoveredThe number of conditions included in the study and the specific diseases or conditions addressed.OutcomesKey outcomes or results measured (e.g., health improvements, engagement levels, satisfaction).Times of MeasurementTimepoints at which measurements or outcomes were assessed (e.g., baseline, post-intervention, follow-up).Data ItemDescription<br><b>Collating, summarizing, and reporting the results</b>The study will employ narrative synthesis, utilizing tables to summarize study characteristics and ﬁndings. A comprehensive list of countries and sources will be compiled to identify relevant literature. Qualitative data from the charting table will be used to map and report on theories/models/frameworks to engage and involve people living with MLTCs and community members globally.