Conceptualizing patient participation in psychiatry : A survey describing the voice of patients in outpatient care

Background: While increasingly discussed in somatic care, the concept of patient participation remains unsettled in psychiatric care, potentially impeding person-centred experiences. Objective: To describe outpatient psychiatric care patients' conceptualization of patient participation. Design: An exploratory survey. Setting and participants: Patients in four psychiatric outpatient care units. Variables: Patients conceptualized patient participation by completing a semi-structured questionnaire, including optional attributes and free text. Data were analysed using statistics for ordinal data and content analysis for free text. Results: In total, 137 patients (69% of potential respondents) completed the questionnaire. The discrete items were favoured for conceptualizing patient participation, indicating a primary connotation that participation means being listened to, being in a reciprocal dialogue, learning about one's health care and managing one's symptoms. Additional free-text responses acknowledged the attributes previously recognized, and provided supplementary notions, including that patient participation is about mutual respect and shared trust. Discussion: What patient participation is and how it can be facilitated needs to be agreed in order to enable preference-based patient participation. Patients in outpatient psychiatric care conceptualize participation in terms of both sharing of and sharing in, including taking part in joint and solo activities, such as a reciprocal dialogue and managing symptoms by yourself. Conclusion: While being a patient in psychiatric care has been associated with a lack of voice, an increased understanding of patient participation enables person-centred care, with the benefits of collaboration, co-production and enhanced quality of care. Patient contribution: Patients provided their conceptualization of patient participation in accordance with their lived experience