Abstract
Purpose: Advancements in multiple myeloma (MM) therapy, including the introduction of oral agents, has produced a shift in the delivery of care from hospital to home. We sought to understand the impact of this shift on patients’ and caregivers’ management work and their treatment-related decision making. Methods: Qualitative interviews were conducted with 16 MM patients and 8 caregivers. Interviews were coded for emergent themes and patterns and a constant comparative approach was used to identify important similarities and differences within and between interviews.Results: Patient and caregiver participants described four types of work, including the work of accruing and personalizing medical knowledge, illness-related work in the hospital, illness-related work in the home, and psychosocial and relational management. They illuminated the physical, psychological, social and relational toll of this work and traced a pathway through which work informed their treatment-related decisions, sometimes in ways that conflicted with their preferences for treatment. Conclusions: The work involved in managing MM, its treatment, and side-effects can inform the treatment decisions that patients and caregivers make. We must continue to find meaningful ways for patients and caregivers to discuss goals of care and treatment throughout the cancer trajectory, as well as support health care providers in the delivery of person-centred care.Implications for Cancer Survivors: With an increasing emphasis on the importance of shared decision-making in MM, an improved understanding of the factors that frame patient’s and caregiver’s treatment decisions will be paramount to ensuring meaningful and high-quality patient-centered care.