Abstract
Background/Aims With the advent of patient-centered approaches to care, much attention has been directed towards engaging patients in their own care. Healthcare providers seek to achieve this through communication about and inclusion of their patients’ values and preferences under the rubric of shared decision-making (SDM). However, few studies have investigated the role a patient’s social support network (e.g., family members or friends) may play in medical decision-making or considered how discussions outside of the clinical consultation can affect a patient’s treatment decisions. Drawing on interviews with oncology care providers, breast cancer advocates, and women newly diagnosed with breast cancer in Northern California, this study investigated how members of a patient’s social support network can influence treatment decision-making for breast cancer.
Methods In-depth interviews were conducted with (1) oncology care providers and breast cancer advocates, and (2) breast cancer patients at four time points throughout their treatment journey, to explore the influence of others on treatment decision-making. At each interview, patients completed questionnaires assessing health-related quality of life (HRQOL), role preferences, and treatment satisfaction. EHR abstraction and observational field notes augmented patient interview data. Interview data were coded to identify recurrent themes across all interviews and frequency distributions for questionnaire data were calculated using IBM SPSS Statistics 20.
Results We conducted 20 in-depth interviews with oncology care providers and breast cancer advocates, and over 150 interviews with 41 breast cancer patients. We report on care providers’ observations of and experiences with members of their patients’ social networks in treatment decision-making. We also describe how patients themselves consider the involvement of others in their treatment decision-making, identifying several areas of decisional influence.
Conclusions Our interviews illustrate how the current healthcare delivery structure rarely acknowledges the circles of care that can influence decision-making. Lack of attention to the influence a patient’s social support network can have on treatment decision-making may lead to sub-optimal decision-making because these influences are not adequately understood by clinicians. Our findings suggest that patient-centered care and patient engagement must go beyond the dominant dyadic models of patient and provider and include an understanding of the influence of others in patients’ treatment decision-making.
