Stroke patient and stakeholder engagement (SPSE): concepts, definitions, models, implementation strategies, indicators, and frameworks-a systematic scoping review.
Cerebrovascular disorders
Patient advocacy
Stakeholder engagement
Stakeholder participation
Stroke
Journal
Systematic reviews
ISSN: 2046-4053
Titre abrégé: Syst Rev
Pays: England
ID NLM: 101580575
Informations de publication
Date de publication:
31 Oct 2024
31 Oct 2024
Historique:
received:
15
07
2024
accepted:
17
10
2024
medline:
1
11
2024
pubmed:
1
11
2024
entrez:
1
11
2024
Statut:
epublish
Résumé
Involving stroke patients in clinical research through patient engagement aims to ensure that studies are patient-centered, and may help ensure they are feasible, ethical, and credible, ultimately leading to enhanced trust and communication between researchers and the patient community. In this study, we have conducted a scoping review to identify existing evidence and gaps in SPSE. The five-step approach outlined by Arksey and O'Malley, in conjunction with the Preferred Reporting Items for Scoping Reviews (PRISMA-ScR) guidelines, provided the structure for this review. To find relevant articles, we searched PubMed, Web of Science, and Embase databases up to February 2024. Additionally, the review team conducted a hand search using Google Scholar, key journals, and references of highly relevant articles. Reviewers screened articles, selecting eligible English-language ones with available full texts, and extracted data from them into a pre-designed table tested by the research team. Of the 1002 articles initially identified, 21 proved eligible. Stakeholder engagement primarily occurred during the design phase of studies and within the studies using qualitative methodologies. Although the engagement of stakeholders in the research process is increasing, practice regarding terminology and principles of implementation remains variable. Researchers have recognized the benefits of stakeholder engagement, but have also faced numerous challenges that often arise during the research process. The current study identifies stakeholder groups and the benefits and challenges researchers face in implementing their engagement. Given existing challenges and limited specific models or frameworks, it is suggested to explore applied recommendations for stakeholder engagement in future studies, that may enhance stakeholder engagement, overcome obstacles, and unify researchers' understanding of engagement and implementation.
Sections du résumé
BACKGROUND
BACKGROUND
Involving stroke patients in clinical research through patient engagement aims to ensure that studies are patient-centered, and may help ensure they are feasible, ethical, and credible, ultimately leading to enhanced trust and communication between researchers and the patient community. In this study, we have conducted a scoping review to identify existing evidence and gaps in SPSE.
METHODS
METHODS
The five-step approach outlined by Arksey and O'Malley, in conjunction with the Preferred Reporting Items for Scoping Reviews (PRISMA-ScR) guidelines, provided the structure for this review. To find relevant articles, we searched PubMed, Web of Science, and Embase databases up to February 2024. Additionally, the review team conducted a hand search using Google Scholar, key journals, and references of highly relevant articles. Reviewers screened articles, selecting eligible English-language ones with available full texts, and extracted data from them into a pre-designed table tested by the research team.
RESULT
RESULTS
Of the 1002 articles initially identified, 21 proved eligible. Stakeholder engagement primarily occurred during the design phase of studies and within the studies using qualitative methodologies. Although the engagement of stakeholders in the research process is increasing, practice regarding terminology and principles of implementation remains variable. Researchers have recognized the benefits of stakeholder engagement, but have also faced numerous challenges that often arise during the research process.
CONCLUSION
CONCLUSIONS
The current study identifies stakeholder groups and the benefits and challenges researchers face in implementing their engagement. Given existing challenges and limited specific models or frameworks, it is suggested to explore applied recommendations for stakeholder engagement in future studies, that may enhance stakeholder engagement, overcome obstacles, and unify researchers' understanding of engagement and implementation.
Identifiants
pubmed: 39482702
doi: 10.1186/s13643-024-02686-y
pii: 10.1186/s13643-024-02686-y
doi:
Types de publication
Journal Article
Systematic Review
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
271Informations de copyright
© 2024. The Author(s).
Références
Drude N, Martinez-Gamboa L, Haven T, Holman C, Holst M, Kniffert S, et al. Finding the best fit for improving reproducibility: reflections from the QUEST Center for Responsible Research. BMC Res Notes. 2022;15(1):270.
pubmed: 35922820
pmcid: 9351171
doi: 10.1186/s13104-022-06108-x
Skovlund PC, Nielsen BK, Thaysen HV, Schmidt H, Finset A, Hansen KA, et al. The impact of patient involvement in research: a case study of the planning, conduct and dissemination of a clinical, controlled trial. Research involvement and engagement. 2020;6:1–16.
doi: 10.1186/s40900-020-00214-5
Gesell SB, Klein KP, Halladay J, Bettger JP, Freburger J, Cummings DM, et al. Methods guiding stakeholder engagement in planning a pragmatic study on changing stroke systems of care. J Clin Transl Sci. 2017;1(2):121–8.
pubmed: 28649454
pmcid: 5471818
doi: 10.1017/cts.2016.26
Cottrell EK, Whitlock EP, Kato E, Uhl S, Belinson S, Chang C, Hoomans T, Meltzer DO, Noorani H, Robinson KA. Defining the benefits and challenges of stakeholder engagement in systematic reviews. J Comp Eff Res. 2015;5:13–19.
Russell J, Fudge N, Greenhalgh T. The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it? Research involvement and engagement. 2020;6:1–8.
doi: 10.1186/s40900-020-00239-w
Martinez J, Wong C, Piersol CV, Bieber DC, Perry BL, Leland NE. Stakeholder engagement in research: a scoping review of current evaluation methods. Journal of Comparative Effectiveness Research. 2019;8(15):1327–41.
pubmed: 31736341
doi: 10.2217/cer-2019-0047
McShan E, Self A, Nalepa E, Driver S. Better Together: Evolution of Patient Stakeholder Engagement in Healthy Lifestyle Research After Acquired Brain Injury. Arch Phys Med Rehabil. 2022;103(12):e102–3.
doi: 10.1016/j.apmr.2022.08.701
Greenhalgh T, Hinton L, Finlay T, Macfarlane A, Fahy N, Clyde B, et al. Frameworks for supporting patient and public involvement in research: systematic review and co-design pilot. Health Expect. 2019;22(4):785–801.
pubmed: 31012259
pmcid: 6737756
doi: 10.1111/hex.12888
Fergusson D, Monfaredi Z, Pussegoda K, Garritty C, Lyddiatt A, Shea B, et al. The prevalence of patient engagement in published trials: a systematic review. Research Involvement and Engagement. 2018;4:1–9.
doi: 10.1186/s40900-018-0099-x
Price A, Schroter S, Snow R, Hicks M, Harmston R, Staniszewska S, et al. Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study. BMJ Open. 2018;8(3): e020452.
pubmed: 29572398
pmcid: 5875637
doi: 10.1136/bmjopen-2017-020452
Hoekstra F, Trigo F, Sibley KM, Graham ID, Kennefick M, Mrklas KJ, et al. Systematic overviews of partnership principles and strategies identified from health research about spinal cord injury and related health conditions: A scoping review. J Spinal Cord Med. 2023;46(4):614–31.
pubmed: 35262473
doi: 10.1080/10790268.2022.2033578
Lim MJR, Tan J, Neo AYY, Ng BCJ, Asano M. Acceptance of disability in stroke: a systematic review. Ann Phys Rehabil Med. 2024;67(2): 101790.
pubmed: 38118296
doi: 10.1016/j.rehab.2023.101790
Brown J, Baer G, Cameron S, Jackson K, Lamouline C, Morley R, et al. Stakeholder involvement in a Cochrane review of physical rehabilitation after stroke: Description and reflections. Cochrane Evidence Synthesis and Methods. 2023;1(10): e12032.
doi: 10.1002/cesm.12032
Katan M, Luft A. Global burden of stroke. Semin Neurol. New York: Thieme Medical Publishers; 2018.
Department of Economic and Social Affairs. World Population Ageing. Oxford Univ Press Inc. New York: United Nations; 2017
Wafa HA, Wolfe CD, Emmett E, Roth GA, Johnson CO, Wang Y. Burden of stroke in Europe: thirty-year projections of incidence, prevalence, deaths, and disability-adjusted life years. Stroke. 2020;51(8):2418–27.
pubmed: 32646325
doi: 10.1161/STROKEAHA.120.029606
Krishnamurthi RV, Ikeda T, Feigin VL. Global, regional and country-specific burden of ischaemic stroke, intracerebral haemorrhage and subarachnoid haemorrhage: a systematic analysis of the global burden of disease study 2017. Neuroepidemiology. 2020;54(2):171–9.
pubmed: 32079017
doi: 10.1159/000506396
Li L, Scott CA, Rothwell PM. Stroke. "Trends in stroke incidence in high-income countries in the 21st century: population-based study and systematic review." 2020;51(5):1372–80.
Norrving B, Barrick J, Davalos A, Dichgans M, Cordonnier C, Guekht A, et al. Action plan for stroke in Europe 2018–2030. Eur Stroke J. 2018;3(4):309–36.
Roudini J, Weschke S, Rackoll T, Dirnagl U, Guyatt G, Khankeh H. Systematic scoping review protocol of Stroke Patient and Stakeholder Engagement (SPSE). Syst Rev. 2023;12(1):180.
pubmed: 37777777
pmcid: 10542246
doi: 10.1186/s13643-023-02347-6
Arksey H, O'Malley LJI. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19–32.
Colquhoun HL, Levac D, O’Brien KK, Straus S, Tricco AC, Perrier L, et al. Scoping reviews: time for clarity in definition, methods, and reporting. J Clin Epidemiol. 2014;67(12):1291–4.
pubmed: 25034198
doi: 10.1016/j.jclinepi.2014.03.013
Peters MD, Godfrey CM, Khalil H, McInerney P, Parker D, Soares CB. Guidance for conducting systematic scoping reviews. JBI Evidence Implementation. 2015;13(3):141–6.
Kujala J, Sachs S, Leinonen H, Heikkinen A, Laude D. Stakeholder engagement: Past, present, and future. Bus Soc. 2022;61(5):1136–96.
doi: 10.1177/00076503211066595
Bramer WM, Giustini D, de Jonge GB, Holland L, Bekhuis T. De-duplication of database search results for systematic reviews in EndNote. Journal of the Medical Library Association: JMLA. 2016;104(3):240.
pubmed: 27366130
pmcid: 4915647
doi: 10.3163/1536-5050.104.3.014
Sacco RL, Kasner SE, Broderick JP, Caplan LR, Connors J, Culebras A, et al. An updated definition of stroke for the 21st century: a statement for healthcare professionals from the American Heart Association/American Stroke Association. Stroke. 2013;44(7):2064–89.
pubmed: 23652265
doi: 10.1161/STR.0b013e318296aeca
Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–88.
pubmed: 16204405
doi: 10.1177/1049732305276687
Arnold D, Glassel A, Bottger T, Sarma N, Bethmann A, Narimani P. "What Do You Need? What Are You Experiencing?" Relationship Building and Power Dynamics in Participatory Research Projects: Critical Self-Reflections of Researchers. Int J Environ Res Public Health. 2022;19(15).
Roach WH Jr, Bischoff JM, Dennis B, Donalson M, Dunbar SB, Hill D, et al. Lay Stakeholders in Science and Research Initiative: A Science Advisory From the American Heart Association. Circulation. 2021;144(5):e96–106.
pubmed: 34176278
doi: 10.1161/CIR.0000000000000999
Boote J, Jones Z, McKevitt CJ, Wallace-Watson C, Rodgers H. Stroke survivor and carer involvement in, and engagement with, studies adopted onto the NIHR Stroke Research Network portfolio: questionnaire survey. International journal of stroke : official journal of the International Stroke Society. 2015;10(1):E6–7.
pubmed: 25491552
doi: 10.1111/ijs.12379
Pollock A, St George B, Fenton M, Crowe S, Firkins L. Development of a new model to engage patients and clinicians in setting research priorities. J Health Serv Res Policy. 2014;19(1):12–8.
pubmed: 24004532
doi: 10.1177/1355819613500665
Sims S, Brearley S, Hewitt G, Greenwood N, Jones F, Ross F, et al. How to develop a patient and carer advisory group in stroke care research. Nurse Res. 2013;20(3):6–11.
pubmed: 23346772
doi: 10.7748/nr2013.01.20.3.6.c9490
Faccio E, Fonte C, Smania N, Neri J. (Re) constructing identity following acquired brain injury: The complex journey of recovery after stroke. Health Expect. 2024;27(1): e13874.
pubmed: 37731198
doi: 10.1111/hex.13874
Farre A, Morris JH, Irvine L, Dombrowski SU, Breckenridge JP, Ozakinci G, et al. Exploring the views and experiences of people recovering from a stroke about a new text message intervention to promote physical activity after rehabilitation—Keeping Active with Texting After Stroke: A qualitative study. Health Expect. 2023;26(5):2013–22.
pubmed: 37409460
pmcid: 10485328
doi: 10.1111/hex.13809
Wang W, Pucciarelli G, Mei Y, Zhang Z, Vellone E. The dyadic self-care experience of stroke survivors and their caregivers: A qualitative descriptive study. Health Expect. 2023;26(6):2325–39.
pubmed: 37497863
pmcid: 10632628
doi: 10.1111/hex.13838
Lin B, Zhang Z, Guo Y, Wang W, Mei Y, Wang S, et al. Perceptions of recurrence risk and behavioural changes among first-ever and recurrent stroke survivors: A qualitative analysis. Health Expect. 2021;24(6):1962–70.
pubmed: 34363288
pmcid: 8628583
doi: 10.1111/hex.13335
O’Hara J, Baldeh M, Parmar D, Williams J. Exploring the experiences of stroke survivors, informal caregivers and healthcare providers in Sierra Leone: a qualitative study protocol. Int J Stroke. 2021;16(2_SUPPL):94–5.
Liu H, Lindley R, Alim M, Felix C, Gandhi DB, Verma SJ, et al. Protocol for process evaluation of a randomised controlled trial of family-led rehabilitation post stroke (ATTEND) in India. BMJ Open. 2016;6(9): e012027.
pubmed: 27633636
pmcid: 5030603
doi: 10.1136/bmjopen-2016-012027
Owolabi MO, Akinyemi RO, Hurst S, Arulogun O, Olaniyan O, Gebregziabher M, et al. Tailored Hospital-based Risk Reduction to Impede Vascular Events After Stroke (THRIVES) study: qualitative phase protocol. Crit Pathw Cardiol. 2014;13(1):29–35.
pubmed: 24526149
pmcid: 4134882
doi: 10.1097/HPC.0000000000000005
Zhang W, Ye M, Zhou W, Gao Y, Zhou L. Trajectory and predictors of family function in caregivers of stroke survivors: A longitudinal study of the first 6 months after stroke. J Adv Nurs. 2024;80(1):264–74.
pubmed: 37395440
doi: 10.1111/jan.15749
Solbakken LM, Langhammer B, Sundseth A, Brovold T. Transitional care for patients with acute stroke-A priority-setting project. Health Expect. 2022;25(4):1741–52.
pubmed: 35501973
pmcid: 9327821
doi: 10.1111/hex.13517
Morgan LJ, Chambers R, Banerji J, Gater J, Jordan J. Consumers leading public consultation: the general public’s knowledge of stroke. Fam Pract. 2005;22(1):8–14.
pubmed: 15640297
doi: 10.1093/fampra/cmh709
Duncan PW, Bushnell CD, Rosamond WD, Jones Berkeley SB, Gesell SB, D’Agostino RB Jr, et al. The Comprehensive Post-Acute Stroke Services (COMPASS) study: design and methods for a cluster-randomized pragmatic trial. BMC Neurol. 2017;17(1):133.
pubmed: 28716014
pmcid: 5513078
doi: 10.1186/s12883-017-0907-1
Lynch EA, Bulto LN, West M, Cadilhac DA, Cooper F, Harvey G. Codesigning implementation strategies to improve evidence-based stroke rehabilitation: A feasibility study. Health Expect. 2024;27(1): e13904.
pubmed: 37990469
doi: 10.1111/hex.13904
Peniche P, de Morais Faria CDC, Hall P, Fingleton C, McPhillips L, Gaetz R, et al. A scoping review of patient and public involvement (PPI) in empirical stroke research. Syst Rev. 2024;19:17474930241262638.
Vicente-Saez R, Martinez-Fuentes C. Open Science now: A systematic literature review for an integrated definition. J Bus Res. 2018;88:428–36.
doi: 10.1016/j.jbusres.2017.12.043
Boon W, Duisterwinkel C, Strick M, Thunnissen M. Open science & stakeholder engagement: why, how, and what could be improved? Utrecht University; 2021:1–22.
Lakomý M, Hlavová R, Machackova H. Open science and the science-society relationship. Society. 2019;56:246–55.
doi: 10.1007/s12115-019-00361-w
Wu J, Wang Y, Tao L, Peng J. Stakeholders in the healthcare service ecosystem. Procedia CIRP. 2019;83:375–9.
doi: 10.1016/j.procir.2019.04.085
Ali-Khan SE, Jean A, Gold ER. Identifying the challenges in implementing open science [version 1; peer review: 2 approved]. MNI Open Res. 2018;2:5.
pubmed: 33937623
pmcid: 7845503
doi: 10.12688/mniopenres.12805.1
Boaz A, Hanney S, Borst R, O’Shea A, Kok M. How to engage stakeholders in research: design principles to support improvement. Health research policy and systems. 2018;16:1–9.
doi: 10.1186/s12961-018-0337-6
Rising KL, Kemp M, Leader AE, Chang AM, Monick AJ, Guth A, et al. A Prioritized Patient-Centered Research Agenda to Reduce Disparities in Telehealth Uptake: Results from a National Consensus Conference. Telemedicine Reports. 2023;4(1):387–95.
pubmed: 38169980
pmcid: 10758542
doi: 10.1089/tmr.2023.0051