Background: Communication between healthcare settings at patient transfers between primary and secondary care, 'handover', is a critical and risky process for patients. Patients' views on their roles in these processes are often lacking despite the knowledge that patient participation contributes to enhanced safety and wellbeing.
Objective: This study aims to improve the knowledge and understanding of patients' perspectives about their participation in handover.
Methods: Twenty-three Swedish patients with chronic diseases were individually interviewed about their experiences with handovers between three clinical microsystems: emergency room, emergency ward and primary healthcare centres. Data were analysed using inductive qualitative content analysis.
Results: Patients participated within the microsystems by exchanging information, and between microsystems by making contact with and conveying information to their next healthcare provider. Enablers for participation included positive encounters with providers, patient empowerment and beliefs about organisational factors. Patients' trust in their providers, and providers' attitudes were important factors in patients' willingness to communicate. Patients who thought medical records access was shared across microsystems volunteered less information to their providers. Patients with experiences of non-effective handovers took more responsibility in the handover to ensure continuity of care.
Conclusions: Patients participate actively in handovers when they feel a need for involvement to ensure continuity of care, and are less active when they perceive that their contribution is unnecessary or not valued. In acute care settings with short hospital stays and less time to establish a trusting relationship between patients and their providers, discharge encounters may be important enablers for patient engagement in handovers. The advantages of a redundant handover process need to be considered.