ASOC Osuntokun Award Lecture 2022: Partnership for stroke prevention and treatment in Africa: Qualitative research processes and findings

Abstract

Background/ObjectivesAfrica 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. MethodsQualitative 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. ResultsThe 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. ConclusionsIn 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.