"It's That They Treated Me Like an Object": A Qualitative Study on the Participation of People Diagnosed with Psychotic Disorders in Their Health Care

Abstract

The mental health recovery model is based on shared decision making, in which patients' preferences and perceptions of the care received are taken into account. However, persons with psychosis usually have very few opportunities to participate in this process. The present study explores the experiences and perceptions of a group of patients with psychosis-in some cases longstanding, in others more recently diagnosed-concerning their participation in the decisions taken about the approach to their condition and about the attention received from healthcare professionals and services. For this purpose, we performed a qualitative analysis of the outcomes derived from five focus groups and six in-depth interviews (36 participants). Two major themes, with five sub-themes, were identified: shared decision-making (drug-centred approach, negotiation process, and lack of information) and the care environment and styles of clinical practice as determinants (aggressive versus person-centred environments, and styles of professional practice). The main conclusions drawn are that users want to participate more in decision making, they want to be offered a range of psychosocial options from the outset and that their treatment should be based on accessibility, humanity and respect. These findings are in line with the guidelines for clinical practice and should be taken into account in the design of care programmes and the organisation of services for persons with psychosis.

Keywords: patient participation; patient-centred care; psychotic disorder; schizophrenia; shared decision making.