Identifying barriers to headache care for Black patients in Toronto: A community‐informed qualitative study of patient experience and recommendations
Candice M. Todd, Muhanad A. Ali, Anjolaoluwa Antonio, Stacia Stewart, Suvendrini LenaAbstract
Objectives/Background
Our objective was to gain a better understanding of how Black patients in the Greater Toronto Area experience barriers and facilitators of headache care. Headache is a common, potentially serious neurological condition. Migraine specifically, can lead to emergency room visits, missed workdays, and a reduction in overall quality of life. Black and Indigenous communities experience worse headache outcomes compared to other communities. We engaged Black patients with headache in the Greater Toronto Area to learn from their perspectives on barriers they face in accessing headache care.
Methods
This study deployed an intersectional, community‐informed qualitative research methodology. We included patients between 18 and 65 years of age who self‐identified as Black and live in the Greater Toronto Area. We conducted semistructured interviews between July 2022 and September 2023. Interviews were deidentified and transcribed prior to inductive thematic analysis to reveal emerging themes and subthemes.
Results
We conducted a total of 12 interviews. Ten were included for analysis. Multiple themes and subthemes were identified, including the impact of headache on personal and family quality of life, negative experiences in emergency departments, as well as challenges navigating primary and specialist care. Patients specifically noted delays in receiving a diagnosis, lack of headache education, and difficulty accessing appropriate pharmacological therapies. Barriers to headache specialist care included difficulty getting time off work, cost of transportation, lack of access to referrals, and wait time to see a specialist.
Conclusion
This is the first study to document the experiences of Black patients seeking headache care in Toronto, Ontario, Canada. Patients with headaches face barriers to care regardless of race, ethnicity, or socioeconomic status. This was not a comparative study; rather, we specifically sought to hear the voices of patients from historically marginalized Black communities who have not been reflected in research and for whom headache outcomes are poor relative to other communities. The participants provided key insights into areas for improvement. Participant recommendations include location of specialist clinics in Black communities, use of social media and other community news networks to promote migraine and headache education in communities, and ongoing use of virtual care models to increase scheduling flexibility and reduce financial burdens of seeking care. Physicians and clinic staff who reflect communities they serve were recommended as a way of improving physician–patient respect and communication.