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

Abstract

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.

Patient engagement, involvement, or participation — entrapping concepts in nurse‐patient interactions: A critical discussion

“…Our written accounts provided input to a discourse in accord with the overall aim of the paper, comprising previous concept analyses and reviews (as above), our prior and current studies (Årestedt et al, 2019; Eldh et al, 2004, 2010, 2015; Eldh, Ehnfors, et al, 2006; Eldh, Ekman, et al, 2006; Jerofke‐Owen & Dahlman, 2019; T. A. Jerofke‐Owen et al, 2021; Luhr et al, 2018; Tobiano, Bucknall, et al, 2015, 2016; Tobiano, Marshall, et al, 2016, 2021; Wärdig et al, 2021), and reviews (Jerofke‐Owen et al, 2020; McAndrew et al, 2022; Tobiano, Jerofke‐Owen, et al, 2021; Tobiano, Marshall, et al, 2015). In this paper, this is reported as a narrative.…”

Epistemic citizenship under structural siege: a meta-analysis drawing on 544 voices of service user experiences in Nordic mental health services

“…A considerable body of literature and policy texts address the importance of service user involvement and their ability to influence and have an equal voice in decision-making processes, including decisions regarding how assistance and support should be carried out (13,19,20,(24)(25)(26)(27)(28). More recently, coproduction of services, i.e., service users' and professionals' joint involvement in decisions regarding plans and services, has been viewed as a normative ideal in social and mental health services.…”

“…The third subtheme of how professional relations seem to differentiate positive from negative service user narratives is individual recognition, i.e., professionals' ability to respond to individuals' needs and preferences, in line with Nordic policy aims to enhance service user involvement [cf. (13,23,28) I have had a lot of psychologists, contacts, and similar, but none of them have worked because they have followed these routines that they have, rather than looking outside the box, but then I got someone who listened to what I said, really … saw me as a person and listened to what I had to say … it was a huge help.…”

Effects of an interactive web-based support system via mobile phone on preference-based patient participation in patients living with hypertension – a randomized controlled trial in primary care

“…Rather, patient participation is defined by a reciprocal relationship between the patient and the professional, striving to bridge any breach caused by knowledge and information differences, with opportunities for being engaged and partaking in intellectual and/or physical activities [ 6 , 7 ]. Patient participation thus relies on learning and reciprocity, where patients’ preferences harmonize with their experiences of being engaged, that is, preference-based patient participation [ 8 , 9 ].…”