Abstract
BackgroundThe evolving nature of multiple myeloma (MM) therapies, including the introduction of novel oral agents, has produced a shift in the delivery of care from hospital to home. Within this context, patients and their caregivers are becoming increasingly engaged in the work of illness management, however the exact nature of this work as well as the ways in which this work informs treatment preferences and decisions within this population has not been explored. This qualitative study sought to develop an in-depth understanding of patient and caregiver experiences with different MM treatments, the work necessitated by MM and treatment management, and the processes of patient/caregiver treatment-related decision making.MethodsQualitative 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.ResultsPatient 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.ConclusionsThe 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 cancer care. 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.
Highlights
The evolving nature of multiple myeloma (MM) therapies, including the introduction of novel oral agents, has produced a shift in the delivery of care from hospital to home
Understanding the complex and nuanced factors that inform decision making among MM patients and their caregivers will be crucial to ensuring optimal and patient-centric decisions are made and that appropriate services and therapeutic modalities are provided. This qualitative study sought to develop an in-depth understanding of patient and caregiver experiences with different treatments, the work necessitated by MM and treatment management, and the processes of patient/caregiver treatment-related decision making
Participant characteristics A total of 24 individuals (n = 16 MM patients and n = 8 caregivers) participated in the study, at which point it was determined that thematic saturation had been reached [27, 28]
Summary
The evolving nature of multiple myeloma (MM) therapies, including the introduction of novel oral agents, has produced a shift in the delivery of care from hospital to home. Within this context, patients and their caregivers are becoming increasingly engaged in the work of illness management, the exact nature of this work as well as the ways in which this work informs treatment preferences and decisions within this population has not been explored. This work requires energy, action, time, and skill [10,11,12]; the extent and impact of this work on MM patients and their caregivers is not fully understood [8]
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