Patient-perceived Burden to Caregivers: Construct Components, Importance, and Wording for a Single Item

Abstract

Background. The self-perceived burden is a patient-centred construct that refers to the perceived impact of the care recipient’s illness and care needs on the physical, social, emotional, and financial well-being of their caregiver(s). The self-perceived burden may negatively impact the care recipient’s quality of life and sense of dignity. It may also impact the care recipient’s healthcare decision-making. The aims of this study were to 1) characterize elements that constitute caregiver burden from the perspective of patients with chronic illnesses, 2) examine the extent to which patients consider self-perceived burden relevant in their healthcare decision-making, and 3) develop a global item that captures the essential elements of self-perceived burden. Methods. Semi-structured interviews were undertaken with US-based patients with chronic conditions. Interviews focused on the importance of self-perceived burden, components of self-perceived burden, and wording of five candidate global items encompassing the concept. Results. The patient’s self-perceived burden to their caregivers implied financial, social, emotional, and physical burdens. Patients considered self-perceived burden important to their sense of well-being and a component in their healthcare decision-making. In framing a global item, “I feel like a burden to my friends/family,” was perceived by patients to encompass the construct of interest broadly. Conclusion. US-based patients felt self-perceived burden is a highly relevant concept, and a global item may capture this distinct patient-centered construct and spillover effects to family/caregivers. A Self-perceived burden global item can inform clinical policies aimed at improving care for each patient and social care services to improve patients' and their caregivers' quality of life.