This scoping review study identified types of evidence related to SPSE, summarized experiences and recommendations, clarified key concepts, definitions, and components, and identified models, implementation strategies, indicators, or frameworks for establishing SPSE.

The results of our study reveal a higher frequency of SPSE in qualitative research methodologies compared to quantitative and mixed methods, which aligns with the findings of Peniche et al. [45]. Many of the studies that specifically focused on SPSE (first category) lacked a defined methodological approach, and none provided a comprehensive or transparent framework for including stroke patients and their stakeholders in the research process. We believe this unclear methodology in the first category could be a barrier to understanding the SPSE process and may reduce the transparency and reproducibility of the reported studies. Furthermore, specific guidelines or protocols for engagement were not offered in any of the studies. While only a minority of the studies acknowledged the challenges related to engagement, most did provide general suggestions for SPSE. The majority of SPSE occurred during the design phase, followed by data analysis, and the dissemination of findings in completed studies.

SPSE has been described using various terms/concepts and phrases, all emphasizing a collaborative approach. Despite the importance of SPSE, the majority of articles reviewed did not carefully detail the strategies used to involve stakeholders in the research process. While a range of methodologies were utilized through the research process, only a limited number provided detailed descriptions of the SPSE methods employed. The literature defines principles of SPSE that cover various aspects of the research process, both general and specific, yet there is limited discussion on strategies specifically tailored to stroke patients and their stakeholders.

One of the strengths of our systematic scoping review is our comprehensive search and specific focus on stroke patients and their stakeholders, unlike previous reviews which had a more generalized approach to patient stakeholder engagements. Our use of clear eligibility criteria and rigorous methods for systematic data analysis and extraction ensures that we have not overlooked any essential information regarding characteristics, concepts, definitions, components, models, implementation strategies, indicators, challenges, benefits, or frameworks related to establishing stroke patient stakeholder engagements. We believe our study is comprehensive due to its inclusive exploration of recommendations and key concepts for establishing SPSE, distinguishing it from similar reviews. Our study involves all aspects of engagements, including PPI, without time constraints up to 2024. Following Arksey and O’Malley’s five steps and utilizing directed qualitative content analysis, we included all relevant papers, including protocols, categorizing them into those discussing or implementing engagement. Our study uniquely addresses the challenges and benefits related to researchers, stakeholders, and the research process in implementing SPSE.

This study was limited by the high number of conference papers and the restricted access to their full texts. Additionally, the diversity of terminology in the field of stakeholder engagement required the authors to formulate a search strategy based on MeSH Headings, Emtree terms, and synonyms. To address this limitation, hand searches were conducted to identify relevant studies and key journals, thereby planning to improve study accuracy. It is recommended that the terminology introduced in this study be integrated into the search strategies of future researchers.

Furthermore, the study was also constrained by the extensive studies utilizing co-design and priority-setting methods, which prevented their comprehensive inclusion in this scoping review. These methods warrant further investigation in future studies.

Based on this review, there has been a noticeable increase in the publication rate of articles, particularly since 2021 [7, 11,12,13, 28, 29, 33,34,35,36,37, 40, 41, 44]. This trend aligns with a growing emphasis on stakeholder engagement in the research process, reflecting broader efforts towards knowledge translation, responsible research, and open science [46,47,48].

European countries, especially the United Kingdom have taken the lead in conducting SPSE studies. The increasing interest from other developed countries like the United States and China, as well as less developed countries such as Sierra Leone and Nigeria, suggests a growing interest in SPSE within the research community [3, 7, 35,36,37, 39, 40, 43]. Despite concerns over the cost of SPSE, many suggested principles, such as prioritizing stakeholder needs and values, and maintaining flexibility and openness, appear to be achievable for researchers irrespective of financial constraints [13, 28, 32]. Hence, it appears that implementing SPSE strategies is feasible across countries with varying economic and developmental statuses. Consequently, future research endeavors should focus on further exploring the advantages and impacts of engagement, including the economic and social repercussions of SPSE.

The findings of this review suggest that the articles can be categorized into two distinct groups based on the study’s objective; those that focused on discussing engagement (first category) and those that implemented this approach (second category) which is not considered in a recently published review [45].

The majority of the first group of studies that discussed SPSE lacked a defined methodological approach [3, 7, 13, 28, 29, 32]. Additionally, none of the studies provided a comprehensive and transparent framework for including stroke patients and their stakeholders in the research process. Furthermore, none of the studies offered specific practical guidelines for engagement [3, 7, 11, 13, 28,29,30,31,32]. Only a minority of the studies acknowledged the challenges related to engagement, but most of them did offer suggestions for SPSE [3, 11, 13, 28, 29, 31, 32].

The second group of studies on SPSE in Health Research had differing research paradigms, including qualitative, quantitative, or mixed methods, with some studies also following a protocol [33,34,35,36]. Among these, articles with a qualitative paradigm were more commonly found. The authors of these studies suggest that the flexibility offered by qualitative research methods has contributed to the growing interest in stakeholder engagement in this area. Stakeholders have been involved in multiple stages of the research process, such as designing interview guides, collecting and analyzing data, and disseminating research findings [3, 7, 11, 13, 29, 30]. However, challenges have been identified in the form of struggling perspectives and disagreements between researchers and stakeholders during the data analysis process [3, 13, 28, 32].

In quantitative research, stakeholders play a key role in the design and dissemination of research findings, as demonstrated by studies conducted by Zhang and Morgan [40, 42]. Other studies also support the engagement of stakeholders in various stages of quantitative research, including selecting research topics and titles, formulating research questions, choosing appropriate measurement tools, designing interventions, and sharing research findings [40, 42,43,44].

Opposite to previous research in the field of SPSE, which primarily utilized quantitative and qualitative methodologies, only one mixed-methods study was identified. This study employed a co-design methodology [44].

In general, in the second category of studies, several stakeholders were involved in the research process, with the largest group being patients with stroke [37, 38, 43]. Other stakeholders identified included caregivers and/or families of patients, professional teams, and policymakers. The terms “research users” and “consumers” were also used in Morgan and Hostetler’s study with a similar meaning of stakeholders, including a wide range of individuals within this group [11, 42]. Wu et al.’s study on identifying stakeholders in healthcare introduced 12 groups as stakeholders in the healthcare system, including individuals from universities, hospitals, nursing homes, monitoring systems, and insurance institutions. The classification presented in this article appears to encompass all relevant people in healthcare and offers a comprehensive definition of stakeholders, which may be valuable for future researchers [49].

Regardless of the study paradigm in which the stakeholders engaged, the highest level of SPSE has been in the study design phase which is in line with the study by Peniche, de Morais Faria et al. followed by other stages including the formulation of a research proposal, data collection, and analysis, drafting of the manuscript, and dissemination of research findings [33,34,35,36, 40, 41, 45].

Based on the results of this study, the terms “involvement” and “partnerships” have been identified as interchangeable with stakeholders’ engagement in the research process [3, 11, 13, 28, 42, 50]. The use of various terms may present a challenge for researchers seeking to approach relevant studies on stakeholder engagement [24]. Therefore, there is a serious need to establish a clear and comprehensive definition of stakeholder engagement in research to support future investigations [3, 24]. Conducting concept analysis studies can help elucidate the nuances of this crucial concept and establish a comprehensive, widely accepted definition to facilitate coherence and consistency within the research community.

The methods of stakeholder engagement in the research process, from initial question formulation to dissemination of findings have been discussed in a few articles, which are in the first category. The dispersed and unstructured presentation of these steps in different studies makes it difficult to follow the SPSE step-by-step. Also, some steps are less discussed and remain unclear, further explanation of the process of engagement is needed [3, 7, 11, 13, 28,29,30,31,32].

In contrast to the inadequate methods mentioned for stakeholder engagement, several principles are considered in the articles. Key principles highlighted in these studies, such as ethical considerations, flexibility, and building trust, align with the guidelines for conducting research in the biomedical sciences. The unique characteristics of stroke patients and the diverse stakeholders involved necessitate the development of tailored protocols to effectively engage all parties involved [3, 13, 28, 29, 31, 32, 50].

However, given the diversity of research methodologies, the complex nature of the stroke patient’s complicated situation, and the numerous obstacles encountered during the research procedure, mere acquaintance with the principles and recommendations for designing and executing studies involving stakeholder engagement proves insufficient [3,