Understanding the role of shared decision making in the treatment of mental illness

This thesis explores the concept and measurement of shared decision making (SDM) in mental health care and the role of patients’ social networks in treatment decisions. A two-phase process was employed to develop and validate the first patient experience measure of SDM designed for use in various mental healthcare settings. Phase I involved umbrella reviews of (a) SDM interventions and tools and (b) social network interventions used in mental health care to conceptualise the meaning, role, and measurement of social networks and guide the development of effective SDM strategies in social network-led treatment. Phase II involved (a) focus groups with clinicians, patients, and social network members from a multi-centre trial evaluating the effectiveness of a social network-based intervention for adults in mental health crises to draft and refine a new measure; (b) cognitive interviews with clinicians, patients, and social network members, consultations with people with lived experience, and input from academic supervisors who are experts in SDM and psychometrics to enhance the measure’s validity and interpretability; and (c) online pilot testing of the new measure to collect data for its initial validation in community mental health services in England. Phase I revealed that patients’ involvement – their feedback, ideas, and perspectives – is not adequately reflected in existing SDM measures that might be used in mental health care. Building on these findings, Phase II led to the development of the first patient experience measure of SDM in mental health care, named SERENE. It is also the first triadic SDM measure developed with clinicians, patients, and social network members to capture each of their perspectives on the same clinical conversation. By incorporating patient preferences into treatment plans, the SERENE measure can potentially improve patient outcomes and reduce hospital costs. Its integration into routine mental health care could further enhance person-centred care.