Service user participation in decision-making – a qualitative study from a services user’s perspective

Abstract

Purpose: The purpose of this study is to describe participation in decision-making among service users with severe mental illness. Design/methodology/approach: Service users want to participate in decision-making and in the planning of their care. There are widely known methods, such as shared decision-making, that could be used to facilitate service user participation. Three focus group interviews were conducted with the participation of 14 persons with mental illness and/or substance abuse who were service users at two Swedish Homes for Care and Residence (HVB). Data were analyzed by qualitative content analysis. Findings: Two themes emerged: service users’ involvement in decisions is hampered by the professionals’ approach and adequate information and experience of participation means greater empowerment. Research limitations/implications: Although it is known that service users would like to have more influence, and that methods like shared decision-making are recommended to empower service users and improve the decision process, research on these matters is limited. Practical implications: This study reveals that there is a need of more systematic decisional support, such as shared decision-making, so that service users can be seen as important persons not only in guidelines and policy documents but also in clinical practice. Social implications: The findings indicate that service users do not participate in decisions systematically, although policies, guidelines and laws providing that service users should be offered an active part in decision-making with regard to their care and treatment. Originality/value: Although it is known that service users would like to have more influence, and that methods like shared decision-making are recommended to empower service users and improve their decision process, research on these matters is limited. The findings indicate that service users do not participate in decisions systematically, even though policies, guidelines and laws are in place stipulating that service users should be offered an active part in decision-making with regard to their own care and treatment. The results of this project bring improvement opportunities to light.