Abstract
BACKGROUND: Internationally, systematic and other review studies are being increasingly conducted in participatory ways. However, there is a lack of knowledge regarding the involvement of various stakeholders in their early pre-protocol stages. AIMS: Given this shortage, this manuscript the participatory preparaton of a systematic participatory, mixed methods review on the reduction and discontinuation of antipsychotic medication. METHODS: The evaluation used both standardized assessments and a focus group to assess 1) the characteristics, knowledge backgrounds, and expertise of the different stakeholders involved, 2) the topics of discussions that were exchanged during the different participatory formats as well as 3) stakeholders' perceptions. DISCUSSION AND PRACTICAL IMPLICATIONS: The various participatory activities involved both users/survivors and researchers with lived experience and/or academic expertise in the field of reduction and discontinuation of antipsychotic medication. They have laid the foundation for the development of the subsequent review design. The participatory exchange was implemented in rather non-directive ways, so that, next to these methodological decisions, a range of other topics could be discussed that iteratively contributed to shaping them. Overall, satisfaction with participation was high. It was concluded that the early phases of a review study are highly suitable for participatory engagement, laying the fundamental grounds for further research. Sufficient time should be provided to substantially anchor the future review design in the stakeholders' specific and diverse perspectives and positions. PATIENT AND PUBLIC CONTRIBUTION: The research team was collaboratively staffed by a portion of researchers who were also identified as users or survivors of psychiatric services. The different participatory formats involved a significant number and wide range of diverse stakeholders relevant to the research and practical field of the reduction and discontinuation of antipsychotic medication.