The work of managing multiple myeloma and its implications for treatment-related decision making: a qualitative study of patient and caregiver experiences.

BACKGROUND: 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, 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. 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 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.

"Guys Don't Have Breasts": The Lived Experience of Men Who Have BRCA Gene Mutations and Are at Risk for Male Breast Cancer.

Men with BRCA1 or BRCA2 gene mutations are at increased risk of developing breast cancer and may have an indication for breast cancer screening using mammography. Since breast cancer is often viewed as a woman's disease, visibilizing and understanding men's experience of having a BRCA mutation and specifically, of screening for breast cancer through mammography, were the objectives of this research study. The theoretical framework of interpretive phenomenology guided the process of data collection, coding, and analysis. Phenomenology is both a philosophy and research method which focuses on understanding the nature of experience from the perspectives of people experiencing a phenomenon, the essence of and commonalities among people's experiences, and the ways in which people experience the world through their bodies. Data were collected via in-depth interviews with a purposive sample of 15 male participants recruited from the Male Oncology Research and Education (MORE) Program. This article reports findings about participants' use of gender-specific language to describe their breasts, awareness of the ways in which their bodies changed overtime, and experiences of undergoing mammograms. This study is the first to describe men with BRCA's perceptions of their breasts and experiences of mammography in a high-risk cancer screening clinic. This study sheds light on an under-researched area-breasts and masculinities-and could potentially lead to improved clinical understanding of men's embodied experiences of BRCA, as well as suggestions for improving the delivery of male breast cancer screening services.