'Who is on your health-care team?' Asking individuals with heart failure about care team membership and roles

Background Complex, chronically ill patients require interprofessional teams to address their multiple health needs; heart failure (HF) is an iconic example of this growing problem. While patients are the common denominator in interprofessional care teams, patients have not explicitly informed our understanding of team composition and function. Their perspectives are crucial for improving quality, patient-centred care. Objectives To explore how individuals with HF conceptualize their care team, and perceive team members' roles. Setting and Participants Individuals with advanced HF were recruited from five cities in three Canadian provinces. Design Individuals were asked to identify their HF care team during semi-structured interviews. Team members' titles and roles, quotes pertaining to team composition and function, and frailty criteria were extracted and analysed using descriptive statistics and content analysis. Results A total of 62 individuals with HF identified 2-19 team members. Caregivers, nurses, family physicians and cardiologists were frequently identified; teams also included dentists, foot care specialists, drivers, housekeepers and spiritual advisors. Most individuals met frailty criteria and described participating in self-management. Discussion Individuals with HF perceived being active participants, not passive recipients, of care. They identified teams that were larger and more diverse than traditional biomedical conceptualizations. However, the nature and importance of team members' roles varied according to needs, relationships and context. Patients' degree of agency was negotiated within this context, causing multiple, sometimes conflicting, responses. Conclusion Ignoring the patient's role on the care team may contribute to fragmented care. However, understanding the team through the patient's lens - and collaborating meaningfully among identified team members - may improve health-care delivery.