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Lookup NU author(s): Professor Raj KalariaORCiD
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND).
© 2025. Background and Aim: Issues concerning appropriate Community Engagement (CE) and communication of research outcomes with stakeholders have received the attention of scholars in different sub-fields of clinical research. However, given its novel nature, especially in Sub-Saharan Africa, CE addressing the ethical, legal, and social implications (ELSI) of neurobiobanking and stroke genomic research has not received much scholarly attention. Therefore, this study was designed as a pioneering effort to report the procedures for developing and evaluating intervention tools for the CE component of the African Neurobiobank for Precision Stroke Medicine ELSI Project. Methods: A community-based participatory research design was adopted. The intervention tools we developed include general advocacy, educative, and training videos focusing on neurobiobanking, stroke genomics and precision stroke medicine in Africa; infographics; and a policy brief. An adapted Doak and Doak's Suitability Assessment Measure (SAM), the Agency for Healthcare Research and Quality (AHRQ) Patient Education Materials Assessment Tool (PEMAT), and semi-structured interview questions based on Willis’ Cognitive Interviewing Techniques were used to evaluate the suitability, actionability, understandability and cultural appropriateness of the tools. Results: PEMAT mean percentage scores of 71.4 % for actionability and 82.4 % for understandability, and a SAM suitability score of 67.9 % were reported for the videos. Identified weaknesses captured in seven thematic areas after assessment analysis by experts and community members guided the final refinement of the tools. Conclusion: The overall reviewers’ reports and evaluation scores indicate that the intervention tools are generally suitable for community deployment in sub-Saharan Africa. Clinical researchers must partner with key stakeholders, define policy objectives and desired behaviour change, and develop appropriate persuasive communication strategies and tools for community engagement.
Author(s): Ojebuyi BR, Afolami I, Adigun M, Singh A, Jenkins C, Nichols M, Wahab K, Bello A, Sarfo FS, Owolabi LF, Musbahu R, Obiako R, Akpalu A, Ogunronbi M, Olorunsogbon O, Calys-Tagoe B, Adesina D, Coleman N, Sule AG, Mande A, Uthman M, Titiloye M, Uvere E, Bukola O, Laryea R, Fakunle A, Adeleye O, Mensah N, Yusuf J, Adeniyi S, Asibey S, Omotoso L, Melikam L, Olujobi D, Oguike W, Akinyemi J, Jegede A, Kalaria R, Ovbiagele B, Owolabi M, Arulogun O, Akinyemi R
Publication type: Article
Publication status: Published
Journal: Journal of Stroke and Cerebrovascular Diseases
Year: 2025
Volume: 34
Issue: 8
Print publication date: 01/08/2025
Online publication date: 14/06/2025
Acceptance date: 13/06/2025
Date deposited: 10/07/2025
ISSN (print): 1052-3057
ISSN (electronic): 1532-8511
Publisher: W.B. Saunders
URL: https://doi.org/10.1016/j.jstrokecerebrovasdis.2025.108378
DOI: 10.1016/j.jstrokecerebrovasdis.2025.108378
Data Access Statement: The datasets used and analyzed are available from the corresponding author.
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