Conflicting views during gynecologic cancer care: a comparison of patients’ and caregivers’ perceptions of burden

This study describes the experiences of cancer caregivers and compares these experiences with patients’ assessment of cancer’s toll on their caregiver. Participants (16 patient-caregiver dyads) were recruited from a NCI cancer center of excellence in the northeastern United States. Patients were in treatment for ovarian (n = 7), uterine (n = 2), or endometrial (n = 7) cancers. Caregivers included 7 women and 9 men who described themselves as spouse/partner (n = 7), adult child (n = 4), sister (n = 2), parent (n = 1), nephew (n = 1), and friend (n = 1). Participants completed semi-structured individual interviews that focused on perceptions of caregiver burden or the impact of the patient’s diagnosis on the caregiver specifically. Data were coded inductively to identify themes present within participants’ responses. This process included open and axial coding. Two overarching themes emerged: (1) patient-caregiver agreement and (2) patient-caregiver disagreement. Patient-caregiver agreement included two subthemes: (1) weight gain and (2) weight loss. Patient-caregiver disagreement consisted of two subthemes: (1) differing perspectives of quantity and quality of caregiving provided and (2) withholding of caregiver concerns. Overall, there was 56% agreement between patient and caregiver responses. The results may inform intervention development to address patient-caregiver communication, cancer caregiver needs, and ultimately improve caregiver quality of life.