Interdisciplinary PhD candidate Kim Taylor
Kim Taylor, Interdisciplinary PhD candidate wins the Student Abstract Award from the Canadian Bioethics Society for her abstract entitled: Patients’ experiences negotiating healthcare decision-making as “a two-way street, working relationship”
Background: A growing emphasis on patient-centered care in recent years has led to a shift from paternalistic towards shared decision making (SDM) models that emphasize healthcare provider (HCPs) as partners alongside their patients through complex healthcare decisions. Nonetheless, few studies have sought to explore patients’ experiences of SDM.
Purpose: This presentation reports patient narratives of barriers and facilitators to SDM stemming from a larger ongoing Canadian study on the intersecting social, contextual, cultural, and systemic factors affecting the ability of patients/families of diverse backgrounds to make complex healthcare decisions.
Methods: In-depth semi-structured interviews with 64 patients of diverse cultural and linguistic backgrounds faced with complex healthcare decisions related to a range of conditions (chronic illness, oncology, degenerative disorders, mental illness, infectious disease and/or brain injury) were conducted. Interviews averaged 45 minutes and were audio recorded and transcribed. Data coding was conducted by two researchers and facilitated by NVivo 9 software. Grounded theory informed an inductive thematic analysis using comparative techniques to explore patterns and variations of SDM.
Results: Preliminary findings indicate participants’ level of involvement in decision making depended on three key themes based on provider, patient and system factors: 1) Epistemic Humility: HCPs’ willingness to be epistemically humble and acknowledge patients’ expertise was reported as central to SDM; 2) Patient (Dis)Empowerment: Systemic provisions, or lack thereof, to sufficiently empower patients to engage in SDM; 3) Taking Charge: Patients’ own perceived responsibility to take an active role and advocate for SDM.
Discussion: Findings from this study support existing research that SDM is a preferred model across many patient populations. Nonetheless, this study highlights key barriers hindering SDM and provides evidence that this approach, while often advocated as a best practice model, is not always actualized in practice.