Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2016 Apr;43(1 Suppl):82S-92S.
doi: 10.1177/1090198116634082.

Stroke Investigative Research and Education Network: Community Engagement and Outreach Within Phenomics Core

Carolyn Jenkins  1 , Oyedunni Sola Arulogun  2 , Arti Singh  3 , Aliyu T Mande  4 , Eric Ajayi  5 , Benedict Calys-Tagoe  5 , Bruce Ovbiagele  6 , Daniel T Lackland  7 , Fred Stephen Sarfo  3 , Rufus Akinyemi  8 , Albert Akpalu  9 , Reginald Obiako  5 , Enzinne Sylvia Melikam  2 , Ruth Laryea  6 , Vincent Shidali  5 , Kwamena Sagoe  6 , Philip Ibinaiye  5 , Adekunie Gregory Fakunle  2 , Lukman F Owolabi  4 , Mayowa O Owolabi  2 ; SIREN Team
Affiliations

Stroke Investigative Research and Education Network: Community Engagement and Outreach Within Phenomics Core

Carolyn Jenkins et al. Health Educ Behav. 2016 Apr.

Erratum in

  • Corrigendum.
    [No authors listed] [No authors listed] Health Educ Behav. 2016 Aug;43(4):480. doi: 10.1177/1090198116658039. Epub 2016 Jun 30. Health Educ Behav. 2016. PMID: 27365255

Abstract

Stroke is the leading cause of neurological hospital admissions in sub-Saharan Africa (SSA) and the second leading cause of death globally. The Stroke Investigative Research and Education Network seeks to comprehensively characterize the genomic, sociocultural, economic, and behavioral risk factors for stroke and to build effective teams for research to address and decrease the burden of stroke and other noncommunicable diseases in SSA. One of the first steps to address this goal is to effectively engage the communities that suffer the high burden of disease. The purpose of this article is to describe plans to elucidate information about knowledge, attitudes, beliefs, and practices about stroke and genomics from patients, caregivers, and local leaders, to recruit participation in research activities and dissemination of ongoing results, as well as to facilitate research uptake and impact within the broader communities of scientists, health professionals, policy makers, and others. We describe the (a) study sites and their communities; (b) plans for community advisory boards, focus groups, and surveys; (c) methods for data management in REDCap database; (d) analyses of qualitative data; (e) evaluation of community and public engagement across multiple sites and research teams in SSA and the United States; (f) use of RE-AIM for presentation of evaluation data; and (g) community indicators of success. This is the first of its kind public outreach engagement initiative to evaluate stroke and genomics in SSA, and has implications as a model for assessment in other high-stroke risk populations.

Keywords: REDCap database; SSA; community advisory boards; community engagement; focus groups; genomics; stroke; sub-Saharan Africa.

PubMed Disclaimer

Conflict of interest statement

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1
Figure 1
Community Systems Wheel Note. SIREN = Stroke Investigative Research and Education Network. The Community Systems Wheel portrays the many community systems that could contribute to the success of SIREN. Each community will determine the membership for their community advisory board and can use the Wheel to discuss which systems need representatives on the local community advisory boards. Source. Adapted from Anderson and McFarlane (2006, p. 218).
Figure 2
Figure 2
Roles and potential roles for SIREN CAB and CAB members. Note. SIREN = Stroke Investigative Research and Education Network; CAB = community advisory board.
Figure 3
Figure 3
Planning for SIREN community advisory board (staffing and budget). Note. SIREN = Stroke Investigative Research and Education Network.
Figure 4
Figure 4
Focus group questions for patients with stroke.
See this image and copyright information in PMC

References

    1. Anderson ET, McFarlane J. Community as partner: Theory and practice in nursing. Philadelphia, PA: Lippincott, Williams & Wilkins; 2006.
    1. Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine. 2000;25:3186–3191. - PubMed
    1. Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Recommendations for the cross-cultural adaptation of health status measures. 2002 Retrieved from http://www.ortho.umn.edu/prod/groups/med/@pub/@med/@ortho/documents/asse....
    1. Charmaz K. Constructing grounded theory. London, England: Sage; 2006.
    1. Concannon TW, Meissner P, Grunbaum JA, McElwee N, Guise JM, Santa J, Leslie LK. A new taxonomy for stakeholder engagement in patient-centered outcomes research. Journal of General Internal Medicine. 2012;27:985–991. - PMC - PubMed

Publication types