Perspectives on ability to work from patients' receiving dialysis and caregivers: analysis of data from the global SONG initiative.

Abstract

Patients receiving dialysis have low employment rates, which compounds poorer health and socioeconomic outcomes. Reasons for under- and unemployment remain underexplored. We aimed to describe the perspectives of patients receiving hemodialysis (HD) or peritoneal dialysis (PD) and their caregivers on ability to work. Data was derived from adult patients' and caregivers' responses from 26 focus groups, two international Delphi surveys and two consensus workshops conducted through the Standardized Outcomes in Nephrology (SONG-HD) and SONG-PD programs. Our secondary thematic analysis identified concepts around ability to work. Five hundred four patients and 146 caregivers from 86 countries were included. We identified five themes: financial pressures and instability (with subthemes of rationing the budget with increased expenditure, losing financial independence and threatened job security); struggling to meet expectations (burdened by sociocultural norms and striving to protect independence); contending with upheaval of roles and responsibilities (forced to establish a new routine to accommodate work, symptoms disrupting work, prioritizing work and other duties, and adjusting to altered capacity to work); enabling flexibility and control (employment driving decisions about dialysis modality and schedule, workplace providing occupational safety and adaptability, requiring organizational support and planning for a future career); and finding purpose and value (accepting and redefining identity, pride and fulfillment, and protecting mental well-being). Employment enabled patients to maintain their identity, independence, financial security and mental health. Symptom burden, workplace inflexibility and juggling roles are major challenges. Interventions addressing motivation, workplace flexibility and safety, and establishing goals and routines could support patients' capacities to work, thereby improving overall well-being and productivity.