Patient Participation as Expectation or Exception? Negotiating Responsibility Among Patients, Families and Nurses in Chronic Illness Care: A Focused Ethnography.

Abstract

Aim: To examine how responsibilities for patient participation are understood, distributed and negotiated among chronically ill patients, family members and nurses in everyday nursing care.

Design: Focused ethnography.

Methods: The study was conducted in a public hospital in China. Data comprised 90 h of participant observation and 30 semi-structured interviews with nurses, patients and family members. Data were analysed using inductive and abductive reflexive thematic analysis.

Results: Participation was enacted through role-based and relational expectations. Patients were expected to cooperate with treatment, report symptoms and contribute to recovery; family members provided practical and emotional support; and nurses educated, coordinated, monitored and safeguarded care. However, responsibilities were often assumed rather than explicitly clarified, making participation dependent on adjustment, mediation and workarounds. Responsibility enabled participation, but also made it conditional and uneven when transferred without supervision, when protection constrained patient voice, or when responsibilities became burdensome.

Conclusion: Responsibility is not merely an individual duty or policy demand, but a relational and culturally situated practice shaping when, how and for whom participation becomes possible.

Implications for the profession and/or patient care: Nurses should move beyond broad calls for shared responsibility by clarifying expectations, supporting patients and families to take on responsibilities safely, and negotiating responsibilities when routines, family involvement or patient preferences create uncertainty.

Impact: This study addresses the overlooked role of responsibility in patient participation. Participation depends on how responsibilities are distributed, assumed, transferred and negotiated among patients, family members and nurses. The findings may inform chronic illness and family-involved nursing care.

Reporting method: COREQ.

Patient or public contribution: Patients and family members contributed to data generation through participation in observations and interviews. They were not involved as research partners in the study design, data analysis or interpretation or manuscript preparation.