Africa has one of the highest rates of stroke and stroke deaths in the world. The burden of stroke is increasing with a 3-year mortality rate of up to 84%. Stroke disproportionately affects the young and middle-aged population contributing to morbidity and mortality affecting families, communities, health systems, and economic progress. My objectives of the 2022 Osuntokun Award Lecture at the African Stroke Organization Conference were to explore our qualitative research findings from our communities and to propose future qualitative methods for improving stroke outcomes in Africa.
Qualitative research processes and findings related to stroke prevention, treatment/ongoing care, recovery, and knowledge and attitudes influencing ethical, legal and social implications related to stroke neuro-biobanking were explored. For each qualitative study, methods were developed by the research team including: (1) plans to implement aims and ethics review; (2) guides and detailed steps for implementation; (3) training for team; (4) pilot testing, data collection, transport, transcription, storage; (5) data analysis and manuscript development.
The research focused on genetics, genomics and phenomics of stroke and more recently on exploring the ethical, legal, and social implications of stroke neuro-biobanking. All included a qualitative component to obtain input and guidance from the community. As in quantitative research, questions were developed by the research team, reviewed for clarity by a small group of community members, and 1,289 community members (ages 22–85) participated in the focus groups and key informant interviews from 2014 through 2022. Answers to questions were diverse with some knowledgeable about the science of stroke prevention and treatment, but many had ideas about prevention and causes of stroke that were not supported by science and many reported using traditional healers for treatment and religious beliefs preventing brain biobanking.
In addition to our current qualitative research related to stroke in Africa and beyond, we must form research partnerships with communities that not only answer researchers’ and community members’ questions but identify and implement ways to prevent stroke and improve stroke outcomes.
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- Stroke in Africa: profile, progress, prospects and priorities.Nat Rev Neurol. 2021; 10: 634-656
- Conceptual framework for establishing the African stroke organization.Int J Stroke. 2021; 16: 93-99
- Standards for reporting qualitative research: a synthesis of recommendations.Acad Med. 2014; 89: 1245-1251
- Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.Int J Qual Health Care. 2007; 19: 349-357
- Community advisory boards in community-based participatory research: a synthesis of best processes.Prev Chronic Dis. 2011; 8: A70
- Culture, illness, and care: clinical lessons from anthropologic and cross-cultural research.Ann Intern Med. 1978; 88 (1978): 251-258
- Critique of the health-belief model.J Adv Nurs. 1983; 8: 467-472
- The biopsycho-ecological paradigm: a foundational theory for medicine.PM R. 2010; 2: 1035-1045
- What's wrong with social epidemiology, and how can we make it better?.Epidemiol Rev. 2004; 26: 124-135
- An integrative, systematic review exploring the research, effectiveness, adoption, implementation, and maintenance of interventions to reduce sedentary behaviour in office workers.Int J Environ Res Publ Health. 2018; 15: 2876-2905
- Qualitative Data Analysis: A Methods Sourcebook.Sage Publications, 2018
- Knowledge, attitudes and practices related to stroke in Ghana and Nigeria: a SIREN call to action.PLoS One. 2018; 13e0206548
- Stroke investigative research and education network: community engagement and outreach within phenomics core.Health Educ Behav. 2016; 43: 82S-92S
- World Stroke Organization (WSO): global stroke fact sheet 2022.Int J Stroke. 2022; 17: 18-29
Published online: March 02, 2023
Accepted: February 20, 2023
Received in revised form: February 17, 2023
Received: January 25, 2023
Publication stageIn Press Corrected Proof
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