Decisional Needs of African, Caribbean, and Black Patients Diagnosed with Brain-Heart Conditions

Abstract

Equity-deserving groups, including African, Caribbean, and Black (ACB) populations, face barriers to equitable brain-heart healthcare. These barriers contribute to unmet decisional needs and challenges in making informed health decisions. For my master's thesis, I aimed to investigate the decisional needs of ACB patients with brain-heart conditions and the unique challenges they encounter during decision-making using an explanatory sequential mixed-methods design. We included participants from equity-deserving groups who participated in an ongoing parent study. We administered surveys and conducted semi-structured interviews with adult patients from the Ottawa Hospital, the University of Ottawa Heart Institute, and community organizations. Our work was guided by the Ottawa Decision Support Framework, PROGRESS-Plus framework, and intersectionality theory. Survey results from 23 participants facing a variety of brain-heart health decisions in the past 12 months revealed that seven (30.4%) participants experienced clinically significant decisional conflict and six (30.0%) experienced clinically significant decision regret. The common challenges that participants experienced during decision-making included worrying about choosing the wrong option (n=10, 50%) and feeling that brain implications were never part of the conversation for their heart condition (n=9, 45%). The interviews further demonstrated complex barriers contributing to their unmet decisional needs, such as difficulties in accessing health information, strong emotions, challenges with patient-clinician communication, mistrust, and barriers to healthcare access. We integrated these findings using joint displays. The insights gained from this study can inform the development of equitable decision-support interventions to effectively address the decisional needs of ACB patients with brain-heart conditions.