Shared decision-making in mental health: Stakeholder information needs

Background: The shared decision making (SDM) paradigm envisages consumers as active participants in healthcare decision-making. Decision aids (DAs) are tools that assist consumers in making decisions.

Objective: New York State is adapting the Psychiatric Clinical Knowledge Enhancement System (PSYCKES) to serve as a DA in community mental health settings. Although medications can play a key role in treatment for mental illness, little is known about consumer and family member information needs regarding medications. Stakeholder input is needed to identify what information is needed (content), when it is needed (point of delivery), and how it should be transmitted (system of delivery).

Method: The NYS Office of Mental Health sponsored three focus groups for consumers (n=30) and three for family members (n=22). Participants discussed information needs regarding medications, including specific information needs; what, when, and how information is obtained; attitudes towards information sharing; and potential uses for PSYCKES reports in shared decision-making. Focus groups were transcribed and analyzed using qualitative methodologies.

Results: Key themes emerged from stakeholder groups in sources of information, information needs, barriers to shared decision making, and security concerns. Consumers and families seek out information from a range of trusted sources and view medication education as an ongoing process. Consumers and families are concerned about the impact of medications on physical as well as mental health, and believe that participation in decision-making improves medication adherence. Findings may be of particular interest to those considering ways to improve shared decision making in mental health.